InfertilityMom

stroke update

2012-01-25T16:26:00.000-08:00

It is about 3 months since my first strokes now. I still see blurry and double so have trouble reading. Can't use my left hand so typing is challenging. Need a walker or wheel chair and doctor say extent of my injuries is profound but hopefully I will mostly rebuild mental connections within two years. Thank you for prayers. Circumstances are hard but God is faithful and good.

six strokes

2011-12-19T19:30:00.000-08:00

I just am home this week after having spent nearly two month in the hospital. I still can't walk without a walker, have lost half of the hearing in my left ear, my left side is partially paralized and my eyes are messed up. I've had six strokes and two surgerrs since late October.
Will write more details as able. Went to chiropracter who crimped an arterey and had ambulance ride to Urgent Care. Thank you to all who sent gifts or cards - God used you in powerful ways!
Follow my husband at https://www.facebook.com/ricksaake for updates.

My Next Book

2011-10-08T14:50:00.000-07:00

I'm often asked when I'm going to write my next book. In reality I've been in the process of writing a book on the life of Paul as encouragement for living with chronic pain and illness for probably close to 5 years now. Since Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss took me about 10 years to write, that may not be such exciting news because it tells you I still have a very long way to go!

What I hope is more exciting, what I would like to ask you to partner with me in prayer about as God continues to unfold His plan, is that two of my other blogs, one on beauty and (now that I've gained more focus for what I want to do with this project) specifically Harvesting Hope from Heartache™, have becoming a launching pads for what I feel God is turning into my "next" book.

Yes, I'm continuing to work on the Given Me a Thorn too, but over the past year God has me focusing more on an exploration of the Fruit of the Spirit (a passage written by none other than Paul himself) through a series of articles I've been writing for Glory and Strength and my InnerBeautyGirlz blog. I've been working on a Bible study related to what He's teaching me and I've written much more than could be presented only in my articles, so I think God's growing a book out of all of this! :)

How does the Fruit of the Spirit tie in with Harvesting Hope from Heartache? I'm glad you asked. ;) It all has to do with sowing seeds, gathering fruit, and ultimately what Source my hope springs from. What better time to look to the Lord for help than in the midst of trials? I'm very excited to see how God is tying so many themes together in my life as He's teaching me through Galatians 5 this year! I pray that this book will be as much of a blessing to you as the journey has been to me.

It is my current goal to have enough of this study written and ready to present to publishers that I can begin the query process around the end of the year or in the very early part of 2012. Will you join me in specific prayer that God will give me His words to write and that this project will unfold according to His will and in His perfect timing?

If you would like to stay updated about my progress, I've just opened a new Facebook page at http://www.facebook.com/HarvestingHope and would love to have you "like" me over there. :) If you don't do Facebook or would rather get updates via feeds, please follow my long-standing Harvesting Hope from Heartache blog directly. Feel free to pass these link along to your friends as well.

of Dinner and Crashes and Hospitals and Wheelchairs

2011-09-24T14:11:00.000-07:00

Life can change so quickly! It seems like much longer than 10 days since we were posting about our first egg. (We've gathered eight now, by the way. We haven't figured out if we still just have one hen laying, or if a second friend has joined in egg production quite yet.)

Thursday the 15th, I had the joy and honor of attending the 7th annual I Hope You Dance benefit for Whittemore Peterson Institute. This is the 3rd year I've been blessed to attend and the first time I was able to go without my wheel chair. I have a few pictures to post (though I may have to "borrow" some from Lilly as most of mine turned out really blurry) and need to dedicate an entire post just to that event, so hopefully I will get back here soon to tell about that wonderful evening.

Due to some recent medication adjustments, my body did go into a "crash" after the excitement of Thursday night, so I spent most of Friday quietly in bed and in a fair amount of pain. It was a recovery day I hadn't mentally budgeted for, but it was doable. The kids were content to enjoy the spoils of my evening out and were great self-starters to get some school work accomplished on their own prompting.

Late Friday afternoon we received shocking news that there had been a tragic accident at our local air races, the third major disaster our community has faced since June. My Dad, who is a Chaplin for the Civil Air Patrol, was activated to go out and minister with the first responders. In the end, 11 people were confirmed dead and over 50 were hospitalized, many with injuries including amputations and other critical issues.

My sweet Daddy got a scattered 6 or so hours sleep in about 48 hours. On Sunday afternoon (while I was still home in bed in my own recovery phase) I receive a phone call from local EMTs that they had responded to a 911 call from his home and that he was himself in an ambulance on his way to the hospital. As the story was reconstructed, we learned that, though he had been intentionally conscious of drinking well, Dad had become severely dehydrated.

Between lack of sleep, the emotional strain of all he had witnessed over the weekend, and dehydration, he passed out, woke up and managed to call 911, then became totally paralyzed, unable to feel or move. Had God not provided the ability for him to make that phone call, and REMSA hadn't responded quickly, breaking down his door to get to him, he would have died on Sunday afternoon! He will be 69 in November and we are SO thankful that God still has more days planned for him here on earth.

Sunday, Monday and Tuesday I was running on adrenaline myself, spending many hours at the hospital and trying to care for homeowner's insurance claims (for the broken door) and care for other issues while my mom is out of state for her own medical treatment. (Mom's due home in just one more week now!!! She has seen dramatic improvement through FibroInnovations, another topic that will warrant its own post once she is back home and I can toughly interview her. :) ) I cannot thank my wonderful husband enough for all he's done to support and encourage me this past week.

Dad was released from the hospital on Tuesday afternoon and Rick brought him to our home for continued TLC. I was his transportation for the first few days, including getting him up to homeschool co-op to teach his Hermeneutics on Thursday (where the class met outside so that I could stay with them without triggering another latex reaction to the building that sent me to the ER a few months back), but he drove himself to his doctor's appointment yesterday morning.

Other than the need for later follow up on a blood sugar spike noted upon hospital admission (that was probably tied to the severity of his dehydration), Dad received a clean bill of health yesterday. He spent his first night back in his own bed last night. I talked to him on the phone this morning and he's going to take things very easy today. I'll probably ask him to join us for dinner again tonight if I have the energy to make anything.

In the meantime, both of our boys came down with nasty colds this week and our 11-year-old spent most of the week in bed. Even around all the craziness, we did manage to get most of a full week of school in and have studied world events outside the U.S. during the Civil War era this past week. We also read the entire Addy (American Girls) series in 5 days and started on our next Laura Ingalls Wilder book, On the Shores of Silver Lake.

In science we have looked at motion and velocity, acceleration, deceleration, momentum and force. Unfortunately most of the suggested science experiments called for the use a balloons, so we didn't do any hands on science activities this week as I find breathing preferable to latex reactions.

Surprisingly, while I am tired and have no doubt that my body has been pushed through both physical and emotional exertion over the past week and a half, I am doing better than I would typically have anticipated right now. I'm in bed this morning, but more by choice (wanting to give myself some down time to recover) than by utter necessity. I'm sore and not thinking as clearly as I would like, but I do have some reserves left to give if I need to use them, something I am not used to being able to draw on after so much upheaval from a week like this.

I'm doing well enough that Rick took our daughter away on an overnight trip this morning (the whole family had planned to go before the boys got sick), and I'm OK on my own to care for not only my own needs but for two sick boys and to be on call for my Dad too. This is so encouraging to me and helps me objectively see how far I've come over the past year. Doesn't this EMPTY wheelchair look wonderful?

Breakfast

2011-09-14T12:16:00.000-07:00

Here's what we had for breakfast this morning. If you are wondering why it's so exciting, you may have missed our egg-cellent news from yesterday. :)

Big J. learned to fry an egg.

Yes, it was a small egg, but we split if 4 ways (Rick didn't want to try 1/5 of an egg) and each got one small, yet very tasty bite. :)

Weeks 5-8

2011-09-13T14:05:00.000-07:00

Don't you love my consistent, weekly blogging technique? ;) May I make up for my lack of writing by sharing my my rose garden with you?

Since my last update, we have finished school weeks 5-8 of My Father's World in our 1850 to Modern Times year (year 5 of the 5 year cycle for those of you who are familiar with the program). We've covered states and capitals (they have the states down cold, but we still have a few capitals to get straight), Abraham Lincoln (Did you know Thanksgiving was established to thank God for Civil War victories?), the Civil War, and lots of great science activities.

Big J. and I read "Across Five Aprils" last month and now all of us are reading our way through the entire Little House on the Prairie (Laura Ingalls Wilder) series. We finished "On the Banks of Plumb Creek" last night and the kids are itching to start "By the Shores of Silver Lake" today. I don't want to get too far ahead in history with our reading as I love the way MFW paces reading suggestions to tie right into the history lessons, but I also never want to discourage my children from loving books, so we are reading pretty far ahead (and including a lot of extras as only two of the Little House books are directly scheduled into the year). This week we are talking about other world events that were happening at the same time as the U.S. Civil War.

J. Bear, or "Dimple Man" as I recently told him I should start calling him on the blog, is working hard on finishing Kindergarten so he's ready for 1st after Christmas, but he's already tagging along with his older brother and sister in much of what they do as well.

Princess R. (3rd grade) is making huge strides in reading! A few weeks back she struggled when letters were "too small" because reading was such hard work. Yesterday she brought me her Bible (small print!) and surprised me with, "Mom, I was reading this Proverb today and wanted to share it with you..." Then she flawlessly read me the entire verse and struck up a conversation about it. :) We are doing some math review with the Princess to really make sure her foundations there are strong before moving forward again, and Dimple Man (K) is trying to keep up with her review, even though it's first/second grade level. The sibling competitive spirit is an interesting dynamic to watch unfold as they each challenge one another to do their best.

I am greatly looking forward to having all three of them together on the same core program (obviously with age appropriate adjustments for each child) doing Exploring Countries and Cultures next year before Big J. (now in 7th) heads on into high school the year after next. Time is marching forward so quickly!

A couple of weeks ago the boys had a special day out with their Dad at the local water park while Princess R. and I enjoyed a Mommy and Daughter day. We baked cupcakes, did craft projects, and had a dolly tea party.

I actually forgot all about my planned culmination of the day, giving R. her Laylie Colbert A Life of Faith doll (I was able to pick her up on close-out pricing a few years ago, before the company retired the doll line), a wonderful companion for her as she starts "Meet Addy" in an America Girl glass at homeschool co-op this Thursday. I don't think R. minded too much that I forgot that day because she was a totally out-of-the-blue surprise yesterday. R. said, "Mommy, it feels so strange to get an amazing gift like this in the middle of the year!" :)

In addition the the doll class, R. will be taking an acting class (also based on American Girl history stories) and ballet. Big J. is taking a cooking around the world class, watercolor, and a class my Dad, Ralph Camp, is teaching on Biblical Hermeneutics (the art and science of interpreting literature). J. Bear will be taking self-defense, a world cultures class, and a preschool class that while possibly a bit too "easy" was the best choice for his attention span given the other possible selections offered that hour. I think my silly boy will need some time for snacks, play and run-around between his two more attention-demanding classes, don't you? (This picture captures his personality perfectly.)

And one more time, I have to share my beautiful roses. This garden is a gift from my husband, and planted in dedication of all our children, both these three living miracles and all their siblings in Heaven. Our oldest, Noel Alexis, was due just to be born 16 years ago, earlier this month.

First Egg!

2011-09-13T10:37:00.000-07:00

I have a month worth of back posts to make, mostly school updates and a few medical ones, but I just couldn't put this one off. It's a day of great celebration in the Saake household. We have our first egg!

Thank you for joining with us in this "egg-cellent" adventure! :)

This was my great-grandmother's egg basket. How fun to be able to use it with our own chickens!

Could You Please Lend a Hand?

2011-08-12T13:50:00.000-07:00

For the past two years my friends have been wonderful about helping to support me in my desire to raise funds for the Whittemore Peterson Institute. I was so blessed when both last year (great pictures and a full run-down of the evening) and the year before, you all send my husband and I to I Hope You Dance.

Well, it's that time again. And so I humbly come asking if you would be willing to partner with me in sponsoring our evening once again? While it is a blessing to get together with others who are like-minded in trying to solve the crazy puzzle of neuro-immune illnesses such as autism, a-typical MS, gulf war syndrome, ME, CFS and much more, what these fund-raising efforts really mean to me is hope. Only a portion of each ticket purchase goes to the actual meal, while about 80% goes directly back to supporting the research of WPI.

Even if I couldn't attend the evening (and that could be a possibility this year, depending on a few factors I won't know for sure until right up to the date), I would still desperately want to be able to purchase the tickets to support this cause. Would you please consider helping me reach this goal? Every dollar helps! (If I cannot reach a full ticket purchase price, I promise to still donate any funds raised through this ChipIn event to the Whittemore Peterson Institute, so please know your donation will still encourage me and go to a great cause either way.) Thank you so much! :)

School Week 4

2011-08-08T16:44:00.000-07:00

We are just finishing "week 4" of My Father' World 1850s - Modern Times. Due to some medical appointments next week, we will have a short school week then, so it works out well to finish "week 4" today and tomorrow, then do "week 5" the end of this week, and early part of next. We plan to start "week 6" around Aug. 22.

So far we have been learning about the pre-Civil War days. This includes both US and world history, as well as an introduction to the Underground Railroad and some specific stories of slavery. In listening to many slave Spirituals on YouTube today, we came across this historical video my kids wanted to share with you. The audio quality isn't great, so you may need to watch and listen a couple of times to catch everything, but it's short, so worth the listen.

Here's another:

School Days

2011-07-24T22:23:00.000-07:00

Can you believe July's nearly over already? We've had a great first two weeks of school, though I'm very, very tired. The rest of my house is in shambles, laundry is way out of control, I haven't couponed in a month (see my growing pile), but school's going beautifully. :)

Science, beautiful science. Who new studying surface tension could be such an artistic venture?

Here J-Bear is learning foundational math concepts. If he stays motivated, we should be finishing up Kindergarten before Christmas (a good month or more before his 6th birthday) and ready to officially move on into first grade.

I'm pleased to say that Princess R. is making huge strides in spelling this year over last, after mastering the idea of letter pictures.

Speaking of pictures, here's her self-portrait with the chickens. ;)

Big J., having had very little formal language arts training through elementary school, pre-tested in at a solid B for his English assessment last week. I was truly impressed with this since some of the testing involved terms he had never been directly introduced to and I was unable to offer any instruction or explanation during testing, so he had to figure out some terminology based on context and his working knowledge of how language should flow, without the advantage of always knowing all the labels. He mastered several concepts with 100% comprehension and only has one area, out of 27 evaluated skills, that he is yet unfamiliar with.

There have been times I have doubted myself in the wisdom of a purely literature-based approach that holds off formal instruction in parts of speech and so forth until jr. high (especially when others challenge me on why we have taken this approach), but his test scores have made a believer out of me. Now that he has gained a natural feel for English through reading challenges, we have an excellent foundation to build upon this year as we explore the formalities of why English works the way it does and the technical labels for all those rules. I anticipate his end of the year scores will show a dramatic improvement this year! Thank you again, My Father's World, for your guidance in our schooling adventures.

Fibromyalgia

2011-07-24T17:34:00.000-07:00

While this isn't my primary health blog - see GivenMeaThorn if you are looking for that one, I am honored to learn today that InfertilityMom has been selected as #22 in the top 100 blogs at 100 Best Sites for Fibromyalgia or Chronic Fatigue Syndrome Information. Thank you! :)

My mom's just completed her 2nd week at week at FibroInnovations. She's sore from all the work they are doing on her, but the results have already been more than we had dared to hope, and she still has another 10 weeks of on site treatment to go before several months of at-home follow-up. After basically falling into this treatment in a way that can only be described as Providential, it truly seems that it is an answer to our prayers for her after over 20 years of pain! Here she is with Dr. Kingston. I will admit that our family was highly skeptical about this program in the beginning, after too many years of "sure cures," but hearing the hope in her voice now makes me feel like this really is going to be a life-altering change for the positive for her.

Speaking of hope and life-altering changes, will you help me keep fighting for change by using your facebook account to join me in daily voting for the Whittemore Peterson Institute? If they can hold onto their current #1 spot in the Pacific region over the next weeks, they will win $100,000 of desperately needed research funding. If we could move them up from their current 6th place (contest-wide) into first there as well, they would be awarded $250,000. Voting will only take moments from your day and every vote counts! You can learn more about the importance of the Whittemore Peterson Institute in my life by reading back through my many posts on XMRV.

Back to School

2011-07-11T14:05:00.000-07:00

My mom's on her way to Logan, Utah for the next 12 weeks where she will be receiving innovative treatment for fibromyalgia beginning tomorrow. Thank you to everyone who helped get her there by voting for her to win this Mom of the Year contest. We are praying this will be a positive and life-changing trip.

The kids and I are getting on track with a new school year today, starting 7th grade, 3rd grade and finishing up K towards starting 1st. Here are our traditional first day of school pictures.

Lots of you are asking about our chickens. No, they aren't laying eggs yet, but we think that should happen sometime in August. To our pleasant surprise, it looks like we ended up with all five hens, so we aren't going to need to find a home for any roosters after all. :) I'll try to get out there and post some current pictures of the ladies soon.

I'm really struggling with allergies and Multiple Chemical Sensitivity (MCS) that's impacting pretty much every aspect of my life. I'm also back around to the anger stage of grief over limitations and would appreciate your prayers in this. I know God's got a plan, but chronic illness is just so "chronic" sometimes...

Make a Differnce!

2011-05-21T22:16:00.000-07:00

Did you know that 30 seconds of your time could make a $500,000 difference? If you have a Facebook account (or know someone who does, or you are considering getting one), please keep reading! If you followed this blog very long at all, you've heard me mention the Whittemore Peterson Institute many times. I am so very thankful for this research organization and the hope they bring to not only me personally, but to millions with M.E., CFS, Fibromyalgia, Lyme disease, Gulf War Illness, a-typical MS, Autism, and more.

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below through May 25th at 9 pm PST. (Just under 4 days left!)

STEP-BY-STEP Instructions:
1. From your Facebook page, go to Chase Community Giving: http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.

5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program.

Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide on site care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these under-served populations.

http://www.wpinstitute.org/help/index.html#chasegiving

Naturally Clean

2011-05-15T11:36:00.000-07:00

I love to stay as "chemical free" as I can, in large part out of necessity due to multiple chemical sensitivities and severe allergic reactions. I use mineral makeup, mineral deodorant, wash my hair with baking soda and vinegar, buy homemade clay and tea tree oil soap from a friend, and do most of my household cleaning with natural products like baking soda and vinegar as well.
Today a friend posted these 74 Uses for Vinegar on Facebook. I was thrilled to find a few new tricks I didn't know yet. Natural cleaning typically saves money too! What are your favorite natural cleaning and personal care ideas? Please share!

Through Another Mother's Day

2011-05-09T13:21:00.000-07:00

I always feel like I've survived an emotional marathon just getting through another Mother's Day. I guess it's one of the lasting emotional "scars" that infertility has left me as it's legacy. I am so very thankful to be a mom, but the journey here was brutal! I have three precious miracles here and I hug them fiercely as I blink back tears of gratitude.

Every Mother's Day I am reminded so very keenly that others are hurting and grieving still. Each year more and more of my friends are called to face MD without their own moms and my heart aches for them as well, though I'm thankful that the ache comes yet without personal understanding. I have at least three more precious babies who kissed my womb all too briefly before flying to Heaven. No one can ever "replace" another, so while I'm thankful beyond words for the three here, Mother's Day hurts for the three There too.

The ins, outs, ups, downs, joy and grief associated with motherhood play round and round in my mind, leaving me exhausted this time of year. So today I want to step away from all those swirling emotions and simply celebrate the gift of my own mom. Betty Camp has been selected as a top 5 finalist for the first ever "Fibromyalgia Mom of the Year" award for the way she has supported and encouraged me through decades of chronic illness, while enduring her own battle against Fibromyalgia.

Would you please join me in celebrating her selflessness by reading Mom's story and giving it a 5-star rating? Public vote is open through today, with the grand prize winner (competing for a $7,000 medical treatment package!) announced this coming Thursday, Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. I would love to be able to give my mom the gift of this grand prize as a small gift of thanks of all she has sacrificed for me through the years.

Muddy Fun

2011-05-04T14:53:00.000-07:00

Little J. loves that our sprinklers over spray into our sandbox. He spent the afternoon engineering a series of "bathtubs" for us.

He did want to be clear that we all understand, "The water is not edible to drink!"

We didn't quiet agree on the definition of "clean" as the result of a back yard bath.

We compromised by following the back yard tubs with an indoor shower at the end of the day. :)

Chickens Growing

2011-04-27T11:58:00.000-07:00

It's been a months since we brought home our week old chicks. They sure have changed!!! We don't know for sure yet, but we are afraid we probably have at least one rooster in the mix, maybe as many as three. (We wouldn't mind, but our neighbors probably would, so if there's a boy amongst the sisters, he will have to get shipped off to a real farm.)

All five babies love to crawl up in my lap and snuggle down, but I don't have a picture of that (yet) because I can never get up to reach a camera with a lap full of poultry!

The End

Held

2011-04-15T22:44:00.000-07:00

I'm very blessed to be part of a new project, a blogging community just for Christian women facing infertility or loss, along with those who love us. If you are journeying through emotional pain surrounding the growth of your family, or if you love someone who is, please come join us at Held, the brand new blogging arm of Hannah's Prayer Ministries.

Musical Genius?

2011-04-04T14:00:00.000-07:00

Bad news: My 108 year old piano has had the ivory keys defaced.

Good news:
My 5-year-old can properly identify the A-G keys from one end of the piano to the other.

I didn't know he even knew the concept of a musical scale, much less the ability to properly identify (and mark) every key.

In the interest of full disclosure I must admit that one octave reads "A, D, C, D, E, F, G," but out of an entire 52 white keys, I'm chalking that up to classic 5-year-old reversal and still saying he correctly marked the entire keyboard.

Thank you for the 25 Facebook comments worth of helpful cleaning advice, especially the non-allergenic options that are safe for antique ivory, when this first happened last week.

I think I've decided to leave the piano as marked, as part of our family legacy. I'm posting these pictures at my Mom's request. ;)

School Resource

2011-03-28T15:43:00.001-07:00

Posting this link to remind myself of a good resource when we hit studying the civil war in a couple of months!
150th anniversary

New Family Members

2011-03-26T19:59:00.000-07:00

Christians in Danger

2011-03-23T11:21:00.000-07:00

"Like a farmer asking a fox how to protect his hen-house."
Hear concerns from Fanklin Graham:
http://www.newsmax.com/InsideCover/franklin-graham-christians-muslims/2011/03/18/id/389992

ME/CFS is Real

2011-02-24T08:03:00.000-08:00

I'm gradually moving more and more of my health related posts over to my Given Me a Thorn blog, but want to keep my InfertilityMom friends in the loop on significant breakthroughs with ME/CFS and XMRV. Here's the latest scoop.

A report on CBS news last night explains over 700 unique markers have been found in the spinal fluid of ME/CFS patients. There was no specific mention of Human Gamma Retroviruses (HGRVs) on the report, but the headline was that "CFS is a real disease." It's so encouraging to watch science continue to validate what those of us who have lived it have known all along!

Since there was a big news splash last week basically telling patients that we could "exercise our way to health" (a frightening recommendation that could lead to significant relapse as most of us have personally experienced), the CBS report was a breath of fresh air to see the media starting to grasp this story. To read more on last week's reports, check out Advocates Hit Back on Graded Exercise for ME/CFS. Dr. Paul Cheney states that the idea that patients can ‘exercise their way to health with this illness is foolishness... insanity."

Getting Published

2011-02-12T10:39:00.000-08:00

I am asked one specific question frequently enough that it's time to put the resources together as a blog post. What is that question? "How can I get my book published?"

Well, honestly I'm not sure you are asking the best person to answer this question as I am one of the most unlikely published authors out there! I wrote about my journey to publication about two years back. My story is a testament to the fact that when God has a story to tell through you, He will make a way!

While I'm far from being an "expert," I'm happy to share what I can as I continue to learn along the way. Three blogs I like to recommend for new writers are So You Want to Be Published by Mary DeMuth, Literary Agent Rants and Ramblings by Rachelle Gardner, and Intentional Leadership by Michael Hyatt (this link leads you to his ebooks on writing winning book proposals). The first is a tutorial from multi-published author Mary DeMuth, kind of a FAQ resource of the questions she is most commonly asked by aspiring authors. The second is an agent's blog sharing industry insights into the Christian market. The third belongs to the Chairman of Thomas Nelson Publishers, the largest Christian publishing company in the world.

I am particularly fond of Rachelle Gardner as she was my acquisitions editor when she was still at NavPress (before starting her own business as an authors' agent), so she walked through the entire publication process for Hannah's Hope with me. Rachelle just wrote a great piece specifically on How to Get Published.

Another fantastic resource (updated on a yearly basis) is the Christian Writer's Market Guide. It is a bit pricey for a resource that goes out of date so quickly, but sell one article to a good-sized magazine as a result of using this tool, and it will more than pay for itself. This is a comprehensive year-by-year listing of Christian publishing houses and publications along with their current submission criteria and all the contact information available for that organization.

One of the first important steps to professional writing is to build a resume. Blogging is a great start, but keep looking for other ways to build on that. For example, (In)Courage offers a guest-blogging submission area. Many online magazines, such as Glory and Strength, are hungry for regular columnists. Many of these jobs come without financial pay, but the value of getting your name known and showing consistent, quality writing will pay off in the long-run. Never underestimate the value of a good bio-line and website link as compensation for a "free" article you get published.

Kathe Wunnenberg, when she first challenged me to stop talking about writing and actually put together a book proposal, also encouraged me to put together a prayer team to walk with me through the project. (You know about Kathe if you read my journey to publication.) She said that was the best decision she had ever made as a writer and I've found this to be the best single piece of writing advice I have ever been given!

I had a prayer team support me through writing Hannah's Hope and I have recently launched a small email group to walk with me through my book on Paul as well. These teams are an invaluable part of the writing process for me. I would encourage anyone seriously seeking to use your writing talents to the Lord's glory to consider surrounding yourself with a small group of trusted prayer warriors. I can give you no more critical advice than this important key.

Please share with me if you are on a writing journey of your own. If you have any questions about writing for publication, please ask. I may not know the answer, but your question may be just what's needed to spur me into finding out the answer for myself, then of course posting the answers in reply for you. :)

Homeschooling with Chronic Illness

2011-02-10T21:55:00.000-08:00

I hope you will join me tomorrow as I chat with Vivienne McNeny on The Sociable Homeschooler radio program about homeschooling with chronic illness.

Here's an article I wrote last year for Rest Ministries as part of an eBook of tips for living with chronic illness.

10 Tips for Homeschooling as a Chronically Ill Mom

1. Take the time to investigate your options and find what fits your physical needs and your children's learning styles, then put a plan in place. Do you intend to "unschool," use a very structured curriculum package, or find some middle ground style of educating your children. For me, using a curriculum called My Father's World makes the difference between me being able to teach my children at home or not, as it is flexible enough to be easily worked around my limitations, yet structured and well-prepared enough that I can open my teacher's book and go.

2. You may be at home, but you don't have to be alone. Look into local homeschool support networks and connect with other homeschoolers online. You can typically find support groups ranging from regional, to teaching style, to curriculum specific. Rest Ministries Sun Room offers a group just for parents who are homeschooling with chronic illness and Home School Legal Defense Association is a fantastic "clearing house" for state-by-state legal information and support.

3. Be realistic about your limitations and don't hesitate to bring in outside help when needed. We budget for housekeeping help when I get overwhelmed, and I'm currently looking for a homeschooled teenager who might be available on a regular or on-call basis to come be a mother's aid, helping with light housework, playing with kids, babysitting while I go to the doctor, etc. As a homeschooled high school student, I had a couple of moms I helped out at low or no charge, one to earn Home Economics credit and the other in a barter exchange while she tutored me in Sign Language.

4. Budget your time, energy and finances around your priorities. Seriously evaluate the reasons you are homeschooling then use your priorities to set the tone for how you spend you money and energy reserves to be sure you are staying on target and not being pulled in too many directions.

5. It's OK, make that imperative, to say "No" frequently! If this activity or energy expense isn't in keeping with my core reasons for educating my children at home, I should let it go without guilt! Life lessons of learning to work together through chronic illness can be a positive and valuable part of our educational experience that helps us keep our core values in proper priority and perspective.

6. Your school day doesn't have to look like anyone else's. I frequently refer to our style of homeschooling as "bedschooling" because, more often then not, I'm laying on a couch in the school room or the kids are all piled in my bed for hours of reading delight. Find what works for you to produce joyful, well-educated children, then work toward the desired outcome without being so concerned about perfection through the journey.

7. Teach your children to be self-motivated by setting attainable goals together and enabling them to learn to work independently at times you are not able to be as hands-on as you would desire. My oldest is going into 6th grade and my youngest is just starting K so I've taught the older two how to read lesson plans for their younger brother and for themselves. This week I was able to guide our kids through lessons the first two days of the week, then I spent the next two solidly down hard in bed, but the kids independently completed three days of school work with only minimal supervision from me, finishing their school week a day early!

8. You don't have to defend yourself. Your choices as a parent are not something you are required to explain to every Nosy Rosie who feels you either can't possibly be as sick as you claim to be because you wouldn't be attempting homeschooling if you were, or that because you are so sick, you are not making wise choices in quality education for you children by keeping them home. The decisions are ultimately between you, your spouse and God alone, so please take other's criticisms lightly!

9. While it really is none of their business, there are times you might want to have a realistic discussion with others about homeschooling while living with health challenges. Take time out to think through your reasons and potential responses ahead of time so you are prepared to give a rational explanation to those who matter to you. The following point is an example of the answer I give in such situations:

10. When people ask why we homeschool when I'm so sick, I tell them that not only is it important to my husband and I that our kids are getting the quality of education we want for them by having the freedom to select our own curriculum and overseeing their learning at home, but honestly this is the "easiest" choice for my health situation since I do not have to get kids up, dressed, out the door with lunches, then managed hours of homework at the end of every day too. I believe that parents who send their children away from home for school still have to work just as hard with their kids, only have far less time to squeeze it all into after kids have already given their "best" hours of the day to an outside teacher. I would much rather spend my limited energies on homeschooling than on parenting on someone else's schedule.

(c) Copyright Jennifer Saake, 2001

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"InfertilityMom" Jennifer Saake graduated from high school at home in 1990 and is now a homeschooling mom of 3 long-awaited miracles, ages 5-11. She has lived with XMRV-Associated Neuro-immune Disease (formerly known as Chronic Fatigue Syndrome) for the past 20 years, with a significant relapse of aggressive debilitation when her youngest was just a year old. She is the author of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss (NavPress, 2005) and is currently working on a book on the life of Paul to offer encouragement for living with chronic pain and illness. http://www.InfertilityMom.blogspot.com

Would you like more tips on living life to the fullest with chronic illness? Check out this two part blog-series and my related interview with Lisa Copen of Rest Ministries, about Coping with Crisis on Top of Chronic.

More Homeschooling with Illness Resources:

Homeschooling When Mom Is Sick - Home School Enrichment Magazine

Parents with a Chronic Illness - Special Needs Homeschool

Homeschooling through Illness and Disability - Home School Heartbeat

Why I Decided to Homeschool My Kids Despite My Illness - Rest Ministries

Homeschooling With Chronic Illness - Professor Mom

Homeschooling With a Chronic Illness - Not in Kansas Anymore

Homeschooling with Lyme disease - Lymeade Homeschool

Homeschooling: What about Socialization - Homeschooling, Chronic Illnesses and Other Daily Events: Living a Special Needs Life

His Grace is Sufficient - A Catholic Life

Homeschooling Through the Tough Times - Home Educator's Family Times

Homeschooling When My Child Is Chronically Ill - Uniquely Gifted

HSLDA Defends Homeschooling for Sick Children

Managing Life

2011-02-03T11:54:00.000-08:00

It seems when life hits, it hits all at once. I'm still not back to the improvements I had been feeling prior to my massive asthma attack nearly three weeks ago, thought this week has been better than the prior two. Tuesday night I did too much and have spent most of yesterday and today back in bed. Being down doesn't mean life stops though. We are continuing to homeschool, hubby's keeping us well-fed, my parents are lending an extra hand with our kids, and I'm getting caught up on some much-neglected writing and blogging. :)
In case you haven't visited my other blogs in a while, please indulge me in a quick tour of some recent highlights:

- On the infertility and pregnancy loss support blog, I recently learned that Hannah's Hope is being translated into Czech!

- What's in a Name?, my poem on living with chronic illness, was named as a top-20 finalist in an international poetry contest.

- I'm guest blogging about inner beauty, this month talking about the hard work of love. (This link will also let you grab a 20% discount + free gift code for Affordable Mineral Makeup™.)

- If you are in need of a dose of hope for life's "desert seasons," drop by Harvesting Hope from Heartache™ too!

- Yesterday I talked here about Tipping the Scales, my ongoing journey with health and hormones and sugar and weight.

It's been a busy week! I'm thankful that God can redeem even "down" days to His glory. Please, tell me what's happening in your life???

Tipping the Scales

2011-02-02T11:27:00.000-08:00

I was one of those teens who struggled to MAINTAIN over the 100 pound mark. I could eat anything and everything I wanted. When I got sick with CFS (we now know to actually be the retrovirus XMRV) at age 18, I basically stopped eating. Bacon bits, cottage cheese and tomatoes were the only things I could choke down for months. Then I discovered an equation I called, "food equals energy" and relied on high calorie snacks to give me momentary blood sugar boosts just to get through the next task in survival mode.

I gained 40 pounds in less than 2 years, only to discover a month before my wedding that there was no possible way I could fit in my wedding dress! :yikes: We bought a new dress, got married, my weight settled in around 143 and within six months we jumped onto the roller coaster of infertility charting and then Clomid. I managed to stay just under 150 (having gained nearly half of my prior body weight!) over the next six years but it was a hard struggle. Finally, I got on Metfomin to address insulin resistance (IR) that went hand in hand with polycystic ovarian syndrome (PCOS) and was thrilled to watch 20 pounds melt off over the next three months!!!

I was and even more thrilled to learn we were pregnant as a result of IUI and injectables that third cycle! The thinking at that time (nearly 12 years ago) was that Metformin should be stopped when pregnancy was confirmed, so I stopped it the day I got my positive result. I was VERY sick (throwing up 20-30 times per day from week 7 on through most of the pregnancy) and lost 12 pounds before I could start gaining anything, weighing just 6 pounds over my starting pregnancy weight the day I went into labor. Our son nursed for 19 months and I continually gained weight that entire postpartum time.

I think I ended up right back at the 143-145 mark by that point. I don't know why I didn't get started on Metformin again at that point, but I didn't. We went on to have two more miscarriages. Eventually I did get back on Metformin and this time dropped over 30 pound in 10 months and started ovulating consistently without other fertility meds!

I had another laparoscopy, lasting nearly 4 hours when the doctor had only anticipated 45 minutes, and was told I would need to come back for another surgery in 3-6 months to remove at least one tube and ovary. I was told there was less than 5% chance of ever conceiving again even with the help of medical aid and that if by some miracle I could possibly conceive, I would never carry another baby to full term due to multiple uterine issues.

My first ovulatory cycle after surgery, God proved the doctors wrong! And though the pregnancy was scary (preterm contractions started at 25 weeks) God brought our daughter to healthy, full-term birth 8 years ago last week. I gained 18 pounds with this pregnancy and kept right on gaining through 2 years of breastfeeding and postpartum depression.

I'm thinking I was around the 150 mark by the time all was said and done this time. I did get back on Metformin but for the first time my weight didn't budge. :( It didn't go down, but I tried to console myself with the fact that at least it didn't go up any further either.

After 13 years, 3 miscarriage, 7 adoption losses, 2 living miracles, multiple surgeries, meds, and so much more, God totally surprised us with yet another son, born the week of our daughter's 3rd birthday! Preterm contractions started at 19 weeks this time (by God's grace he was only born a month early) and while I wasn't nearly as sick as I had been with our first, I again dropped several pounds before I could start gaining and was just 6 pounds over starting pregnancy weight on the morning of his birth. The same pattern of ongoing weight gain happened over the next year and a half of breastfeeding.

Again I found myself parked right around 143-145 pounds, as seemed to be my body's natural landing spot whenever PCO and IR went unaddressed medically, and now sometime tipping up to around 150. I did get back on Metfomin again briefly, but by now my body was totally burned out. The hysterectomy I had been told to expect before my 30th birthday could be held off no longer and 2 1/2 years ago, at age 36, 10 weeks worth of heavy bleeding that would not respond to medical intervention led to knowing it was time to write the final chapter of our infertility story.

Though I kept one ovary, my broken uterus had to go. It was especially hard as my trusted ob/gyn moved out of state a week before all the bleeding started and I had to go through these decisions and surgery with a doctor who I had only just met. He immediately took me back off Metformin saying that since I was no longer rying to conceive, there was no reason for me to stay on Metformin. I argued that as long as I still had an ovary, I still have PCOS (and really, even if the ovary were gone, PCOS's long-term impact should still be addressed) but he wasn't in agreement. As a result I began packing on weight like never before. The girl who struggled to maintain 100 pounds was now to 160 by last Christmas (2009) and a pound shy of breaking the 170 mark this Christmas!

Due XMRV my physical ability to exercise is almost non-existent. I use a wheel chair most times I leave the house because of my inability even to stand for any length of time. I cannot walk to my own mail box at the end of our street. I eat lots of fruits, veggies, lean meat, but I do crave sugar and carbs and while I'm typically fairly careful here, once I get started on sweets, I tend to binge. I try to make good food choices overall, but the weight kept piling on anyway. You may remember my post about Seeking Contentment with Great Gain gain from last July. To me Metformin was the only answer but none of my doctors would budge.

Finally, this past October, I started some new medications for the CFS (after trying IVs and all kinds of other things these past couple of year) and that actually seems to be helping. The meds even list weight GAIN as a common side effect, but I believe my body was fighting so hard just against illness that it couldn't let go of weight. Now that I have some help for my battered immune system, I'm dropping about 4 pounds per month (down a total of 15 pounds since October).

Now that I have some momentum, I'm wanting to make even better food choices. On my doctors orders, and by God's strength alone (sure not in my power!), I now in my 12th day off of processed sugars!!! My doctor told me in no uncertain terms a couple of weeks ago that "cutting back" on sugar isn't OK, that I need to cut it OUT all together. This has been a hard battle as sugar has remained my security blanket through all the ups and downs with weight and health crisis in general. I read this week that sugar is as addictive as cocaine! But God's giving me victories every day, like being able to joyfully say, "No thank you" when offered birthday cake for both of our youngest living miracles this past week. It's an exciting process even if it is a moment-by-moment battle.

Thanks to the kindness of my sweet friend Veronica, I just started reading Made to Crave: Satisfying Your Deepest Desire with God, Not Food by Lysa Terkeurst. (I don't know how long the offer will last, but a 21-day companion devotional called Craving God is FREE as an Amazon Kindle download today! If you don't have a Kindle, you can download a free ebook reader from Amazon as well.) I know Made to Crave is the right book God sent me at the right time. It's not a diet program, it's a Bible study on heart issues and replacing food cravings with a deeper relationship with the Lord.

How lovely is your dwelling place, O LORD Almighty! My soul yearns, even faints, for the courts of the LORD; my heart and my flesh cry out for the living God. - Psalm 84:1-2

I'm at 154 pounds right now. My goal weight for my height and bone build is 125ish, so 15 down and about 30 pounds left to shed to be at a more healthy weight. I've been as low as 113 (nearly 9 years ago, just before conceiving our daughter) and I know that was TOO thin, but I know myself well enough to know I could be tempted to try to get even below that 125 mark. Being hopefully optimistic that I can continue loosing weight this time simply by addressing significant health issues and continuing to make wiser health choices, I want to be accountable that I don't let myself drop that low again either. Thanks for walking with me through this journey. I'm praying that God will help me stop this yo-yo once and for all!

Sweet Peace

2011-01-27T09:26:00.000-08:00

I'm 5 1/2 days into the no-sugar challenge my doctor has placed before me. It's not easy. But God is faithful and this was the devotional that He timed to pop up in my inbox today:
Nothing Tastes as Good as Peace Feels

XMRV and ME

2011-01-21T09:43:00.000-08:00

I've been laying low and quiet lately, focusing on striving to heal and on my kids and their schooling. This has been a particularly rough week physically, after a severe allergic reaction to airborne latex last weekend. (Some kids blew up a few latex gloves at a science competition where my kids were also competing and I almost landed in the hospital after just being in the same room. Still recovering and fighting asthma and sever weakness as a result.)

Today's a big day in the blogging world as ME/CFS patients try to raise awareness about XMRV and the link to Chronic Fatigue Syndrome. Since I don't have the energy to post a unique post myself, I'm using a "cookie cutter" post that someone else has put a lot of time and energy into writing for me. If you are a long-time followers of this blog, a lot of the information may be review, thought there are a few links I don't think I've posted before. If you are new to InfertilityMom, here's a great basic overview of what the excitement about XMRV is all about. From a personal perspective of why this is all so important to me, here's the link to a poem I wrote last year.

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In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

If Christmas Happened Now...

2010-12-23T12:51:00.000-08:00

I keep watching this over and over and over again. Beautifully captures the story of Christmas for today's culture.

Frame not wide enough? See it here.

CFS Blood Donation Ban and More

2010-12-06T15:42:00.001-08:00

Press Release:

CORAL GABLES, FL, DECEMBER 6, 2010 – In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.

ME/CFS first gained national attention amidst the AIDS epidemic in the early l980s. As early as l99l, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

“This can happen to anyone,” said Sita Gange Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now.”

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7 % of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

“The NIAID, the national institute responsible for infectious disease research, has yet to fund outside grants for XMRV research in ME/CFS,” explains Annette Whittemore, President of WPI. “WPI has had its last six XMRV-related grant proposals turned down; despite the fact that researchers have shown XMRV is transmissible and infectious.”

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Because ME/CFS is not a women’s disease and is associated with infectious pathogens, the patients are asking that XMRV-related diseases be moved from the Office of Women’s Health to the NIAID. Patients are also seeking support for clinical trials of drugs shown to be effective against XMRV and other infectious organisms found in those with ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:
Sita Gange Harrison/Tina Tidmore
561-313-1835
205-680-6890
Media@mcwpa.org

This on the heels of last week's Red Cross announcement that they will be banning blood donations from people diagnosed with CFS. While Red Cross isn't specifically saying they are concerned about XMRV in the blood supply, it is logical to conclude this is their reasoning behind such a ban, following the lead of several other countries who have blocked blood donation from Chronic Fatigue Syndrome patients due to clean blood supply concerns.

Birthday Presents for Jesus

2010-12-03T10:56:00.000-08:00

Our family hasn't abandoned the tradition of gift exchanging, but I love these reminders to focus on Whose birthday is being celebrated this Christmas:
When the Gifts Are All for Him
Don't miss out on the powerful video at the end. It could change your life!
After our 10-year-old watched this he asked, "Mom, can we invite Mr. Ray and Miss Cora [a homeless couple we met on a street corner a few weeks ago] home for Christmas?"
Hmmm. God, am I up to the challenge of truly being Your hands? Your heart?
We won't be in town for Christmas this year, but what can we do for Ray and Cora, and thus for Christ, for His birthday???

Did the Baby Die?

2010-12-01T09:58:00.000-08:00

Wow!!!
Powerful story at A Holy Experience entitled, The Great Give Away.
Go. Read. Wipe tears.
Be challenged and refreshed as we prepare our hearts to count down to Christmas.

DaySping 30% discount code

2010-11-30T12:30:00.000-08:00

I've just signed up as an affiliate with DaySpring. It cost me nothing to join the program and I'm a frequent customer there and already share my finds with friends and family, so I decided I might as well earn a little money for doing what I'm already doing. :)
If you love DaySpring as much as I do, you won't want to miss this coupon that expires tonight! Shop the DaySpring Super Sale and get 30% off with the biggest coupon of the year! Expires Nov. 30th.

After Infertility "Normal"

2010-11-30T11:00:00.000-08:00

I so appreciate the reminders from Russell Moore, an after-infertility dad, about how normal it is to get frustrated in parenting, even when this is what we begged and prayed for. http://www.crosswalk.com/blogs/russellmoore/11641846/ Good reminder to not take my "normal" for granted. :)

To Write

2010-11-01T08:12:00.000-07:00

One of the many blogs I follow is written by Lysa TerKeurst. She posted something recently that's playing over and over in my mind. As background I guess you should know that as much as I love to write, and am [GULP!] actually learning to embrace public speaking when given the opportunity, I often struggle to know what to share. What do I say? What's of value? What can I give that will make your time investment in my words be worth your while?

When I find myself voicing these questions, Mom's advice is always simply, "Just tell your story, Sweetheart." And I do. But sometimes it seems awfully self-centered. And I wonder if this is really the way to go about using the platform God's built for me. I don't want it to be "all about me," but since one of the key rules for writers is "write what you know" or "write from experience" I've never figured out a better way to go about it.

With this in mind, it was a huge breath of relief, an "Ah-ha!" moment, to read Lysa's recent thoughts:

I’m more convinced than ever people don’t care to hear about our Jesus these days until they meet the reality of Jesus in our lives.
Don’t skim past that last sentence too quickly. Our history with Jesus is our best salvation message.
If you look at the word ‘history,’ it’s interesting to break it in half and see the words, “His story.” That’s the thing this world is dying to hear. People can debate and argue theology all day long but they can’t argue what Jesus has done personally in our lives. Truth lived out is the best sermon.

She had more inspiring thoughts to share, but these are the words the lept into my soul.

So that's the trick. That's what makes the difference between how telling my story makes it "all about me" and why telling my story can instead point someone to Him. I've heard it said many times, "You are the only Bible some people will ever read" and agree with the statement, but somehow never quite made the bridge to how "just telling my story" was anything other than narcissistic. Having it worded by Lysa that, "people don’t care to hear about our Jesus these days until they meet the reality of Jesus in our lives" just made it "click" for me, that I'm right where God has me, living my life, telling my story, praying to be used by Him through it all. :)

A sweet quote from the facebook page of A Friend in the Storm seems to go along with all this. "GRACE is more than a comfort. It seasons our speech, fragrances our lives, & explains our eternity."

Lord Jesus, You are the author of my life. Please live and work in and through me, letting Your story speak grace through my every word. I am nothing without You. Let me be a light to shine Your love for hurting people, leading the broken to Your heart!

more 4-isims

2010-10-21T20:03:00.000-07:00

4-year-old was diagnosed with migraines today. When telling Daddy about his doctor's appointment at dinner he started with, "I have Mommy's um..." Wasn't sure where he was going with the whole "Mommy" thing until I prompted him about with the word "migraines" and he piped up, "Yeah, I have 'her-grains'!" as he pointed my way. Guess he'd been hearing me say "my-grains" instead of "migraines"!

We also enjoy listening to K-LOVE radio as we drive in the car. Last week he asked me to turn on "Caleb Radio" because it has songs about Jesus and has the same name as his friend Caleb.

My Miracles

2010-10-18T10:57:00.000-07:00

Updates

2010-10-15T10:28:00.000-07:00

Today is Pregnancy & Infant Loss Awareness Day. Infertility, pregnancy loss, inability to even try to grow your family (due to singleness or physical health limitation) are common to the world of chronic illness. I am told that my underlying health issues are probably a big part of the reason my body rejected at least three of our children before birth. As I loving remember Noel, Joel and Hannah, my three hard-fought-for and long-awaited miracles here on earth and my amazing, faithful husband, are blessings I don't take for granted! Praying for every hurting heart not finding yourself in the family you had pictured today. {{{hug}}}

I'm headed out with my daughter this afternoon to visit a friend's school. Our daughter, R., has been faithfully praying for her friend E. since E. was diagnosed with Leukemia a couple of years ago. Today we will hear from a couple of E.'s medical care team members as they present to E.'s class about E.'s journey. Praying it will be a time of healing for all and will help answer some of R.'s questions that I really have no answers for myself.

I'll be changing medications again this week and am thankful that my parents should be back in town (have been on a mission trip since June) to help our family through the potential transition time as my body continues striving toward wellness.

XMRV questions answered

2010-10-10T23:05:00.000-07:00

I frequently reference the retrovirus XMRV on this blog. If you don't know what I'm talking about, start here.
I believe it is several months old, but I just came across a great explanation of XMRV, answering questions like how XMRV is to XAND as HIV is to AIDS. These terms are all defined and questions about the definition of Chronic Fatigue Syndrome (and how it relates to XMRV) are also addressed. Please take a moment and visit http://www.cfids-me.org/xmrv/ if you have questions about any of this!

2010-10-08T09:19:00.000-07:00

Thank you Whittemore Peterson Institute! (If the link doesn't work today it is because their website is undergoing a face lift. Keep checking back.) One year ago my world was shaken by an "earthquake" of unparalleled size, news that seemed unbelievable, the discovery of a retrovirus (like HIV or HTLV), called XMRV, in my blood!

As the initial shock wore off and title wave of emotions calmed, we (the "CFS" community) began to see the amazing impact this news carried, a tsunami wave that could tear down decades of government denial and physician misunderstanding. A year later the "aftershocks" continue to ripple, gaining momentum through ongoing research breakthroughs, cracking the foundations of the statues quo, and carrying us on waves of renewed hope.

30+ years

2010-10-04T13:04:00.000-07:00

I posted last month about my 20-year landmark with ME/CFS. I started that story talking about "waking up feeling great" and then getting so sick. Because of this dramatic "overnight" decline in my health, I would typically be classified as having had a "sudden onset" case of CFS. To me it's not quite so clear-cut.

For as long as I can remember I've gotten sick frequently. Whenever I've been sick I've gotten thing harder and longer than anyone around me, but in between illnesses, was a regular little "Energizer Bunny" before that hard ME/CFS crash 20 years ago. Going back to first grade, age 6, I can remember challenges with energy and blood sugar, unable to make it from a hearty breakfast to lunch with only one snack, ending up in the nurses office on a regular basis because I was just to hungry and shaky to make it through the morning without getting sick. Through high school I carried mini snickers bars in my purse to off-set sudden blood sugar drops. My blood sugar levels have been checked over and over and over through the years and always come back within "normal" parameters, though I am "insulin resistant" as tied to PCO (polycystic ovarian syndrome,) and have often exhibited signs of either hypoglycemia or diabetes at various time, but blood work never supports the symptoms.

When I was 8 (30 years ago) I had mono immediately followed (within 3 weeks or so) by chicken pox. My chicken pox were of such severity that, had we been in the U.S. (we were in Japan at the time), I likely would have been hospitalized. My body has never been totally "normal" since that time. I started having frequent, unexplained abdominal pains that same year, too young to puberty, but the only explanation we were ever given was years later when I was diagnosed with Endometriosis. I also had severe leg aches all through my growing-up years but doctor after doctor wrote them off as "growing pains" and my mom was left without answers.

In addition to Endometriosis (finally diagnosed at 16, but a problem from the very onset of puberty), I also started having symptoms of Fibromyalgia in my mid-to-late teens. The Fibro wasn't officially diagnosed until I was 24, but can be traced back to a specific time, I think around my junior year of high school, when my mom and several friends and I all had some strange pains and vague sense of un-wellness that lingered for months. We jokingly deemed it the "wrist flu" because it was most pronounced as pain in the wrists. For most of my friends it stuck around a few months then resolved. For me it never really went away, but slowly added "trigger points" in my neck, shoulders, arms, hips, knees and so forth.

The summer between my junior and senior years of high school was especially stressful. I was waking up at 5am, working 8-10 hour days, then coming home to care for my family, cooking, cleaning and helping run an in-home hospitality ministry, trying to fill my mom's shoes as she recovered from surgery for a severely broken and displaced ankle joint. Having always needed much sleep, I wasn't falling into bed until 10 or 11 each night, only to be up by 5 again the next morning. I remember feeling so utterly exhausted that summer that I decided this must be the definition of "bone tired" for my very bones seemed to scream with exhaustion. The difference between that fatigue and what I face now is that then I was able to keep "pushing through" whereas the CFS fatigue is one that can't be "pushed". When I'm "done" now, no amount of will power is enough to push past the wall and keep fighting. Any attempts to do so will just land me more firmly in bed.

My senior year of high school, age 17, was delightful. My mom was getting back on her feet, my class load was light and almost entirely fun electives as I had nearly completed all of my high school requirements by the end of my junior years. I was enjoying more adult freedoms having earned my driver's license that previous summer. After a highly stressful season, my schedule was easy and my heart was light. Strangely I started experiencing mini "episodes" many weekends and found myself frequently feeling run-down and running low grade fevers by Sunday afternoons. Typically I would crawl in bed and sleep for a couple hours then feel fine again. The thing that seemed particularly unusual about this scenario was the frequency and consistency (almost always hitting just after church on Sunday afternoon, typically 2-3 times a month) it was happening during my senior year. As I recall, these weekend "spells" had primarily stopped before high school graduation. Beyond the Endometriosis and (as-yet-undiagnosed) Fibromyalgia symptoms, I had no other indication that anything was really "wrong" at the time I left for college.

It is my personal speculation that I have carried XMRV for at least 30 years, possibly longer. One reason the mono/chicken pox when I was 8 seems like a reasonable marker to have been infected at least since then, is that my CFS onset 20 years ago came with another mono exposure. I've had 6 more cases of chicken pox (I should certainly be lifetime immune after the severity I had them as a child) since my CFS onset 20 year ago, but never a case of shingles, so it seems my body doesn't know how to develop full immunity to chicken pox. I believe the XMRV / MLVs / HMRV / HGRV (or whatever name they are finally going to settle on calling it!) retro-viral family had been quietly biding it's time in my body, flaring up just enough to cause some underlying issues throughout my childhood, but primarily staying silent until it was triggered into full blown activation, expressing itself as ME/CFS.

How did I become infected in the first place? What triggered the full blow CFS onset? Those are the million-dollar questions!

Genetics may play at least a part. I can look back as far as even my great-grandfather and his chronic migraines and skeletal frame, unable to maintain weight, and down on through other family members and see some potential for family history of auto-immune/ neuro-immune/ possible retro-viral illness tendencies. My mom's "wrist flu" never went away either, leaving behind the aftermath of Fibromyalgia including pain and trigger points and some fatigue for her, but not on the same level as my CFS fatigue. Did she "get" Fibromyalgia at the same time I did in high school, or were we both already carry a retrovirus that possibly I inherited from her at birth? (We do not yet know if she is positive for XMRV.)

Or maybe, knowing XMRV can survive in respiratory secretions, I was exposed to it on the playground at the same time I was first exposed to mono/chicken pox? I don't see evidence for any retrovirus being "easily" contagious, meaning it doesn't seem dangerous to simply be in the same room with someone with an active XMRV infection, but I wouldn't be surprised if this retroviral family of is more easily transmitted than the retroviruses we have always known to require sexual or blood exposure.

Kids aren't often too careful about hygiene, so maybe I shared food or drink with a friend. Or, gross as it sounds, maybe someone with an active infection sneezed, grabbed a ball while the virus was still fresh and "wet" on his/her hands, then bounced it to me and I rubbed my eyes right after catching that slimy ball? Of course these are only personal speculations as I've tried to piece together my point of contraction, but the abdominal pain I've felt since age 8 hasn't resolved even with a hysterectomy and is such a "classic" CFS symptom that it seems nearly unfathomable that I haven't been infected at least since childhood.

Another factor that I must address is vaccinations. Having lived overseas (the Philippines and three parts of Japan, along with a 10-day trip to Korea) for most of my childhood, I had a ton of vaccinations, not only the standard childhood kind but also all those needed for international travel. After nearly every inoculation I have had poor reactions, never life-threatening, but often making me very ill with fevers and misery. (As a side note, I also "teethed" hard with fevers and pain and feeling poorly, not only in infancy, but every time I got new molars all through my teens.) They say you don't "get the flu" from a flu shot, but what I experience from an allergy shot, a flu shot or any kind of vaccine is typically at least as bad as any flu.

I know many doctors won't agree with me on this, but I don't think vaccines are all they are cracked up to be, especially for someone who is already living with an underlying immune system dysfunction. (I know several moms who themselves have CFS, and their kids developed autism after vaccinations - interestingly enough, these kids and their moms are gradually testing positive for XMRV as well! Here is one example, though I can think of three right off the top of my head and know several others in more extended circles.) I was re-vaccinated for measles within the last month before leaving to college, then had my mono exposure that knocked me off my feet just a month after getting there. There has been speculation from the very beginning, even from my original doctors, that my reaction to that measles vaccination was very likely a contributing factor to the breaking down of my immune system, with the stress of college lifestyle and the second exposure to mono being the final "straw that broke the camel's back" and sent me into a spiral of T-cell dysfunction.

So many questions. So few definitive answers at this point. I definitely carry a nasty retrovirus that leaves little room for doubt that it is behind many health struggles I've carried since childhood. But when classifying me as a "CFS" case, am I "sudden" or "gradual" onset? It depends on how you look at it!

And Then Life Changed...

2010-09-23T10:44:00.000-07:00

20 years ago this morning, Sept. 23, 1990, I woke up feeling "great"! (See caveat here.) I had recently turned 18, was a month into my freshman year at college and feeling very grown up. What a bright future lay ahead of me as I mapped out my special education degree with an emphasis in deaf education. Little did I know that on this day my life would take a dramatic change.

It's 2010 now and I'm 38. Those college days are over half a lifetime ago for me. I've fought "swiss cheese" memory for the past 20 years, with ongoing short term memory dysfunction. (Over a 20-year span, that adds up to a lot of memories of important things like my kids' childhood landmarks that I have not written down lost for the long term as well). But that day, Sept. 23, 1990, is seared into my memory.

My first hint that anything was wrong was mid-afternoon when I tried to take a quick little trot up the short knoll from the grassy flat behind my dorm. Just a few months before I had impressed high school classmates with the speed I could dash the distance of the football field, but today I was winded by this tiny little jog and couldn't catch my breath for 15 minutes. How strange! And what was this overwhelming exhaustion after such a simple excursion? Maybe I needed to put away the books and take a nap on this lazy Sunday afternoon?

The nap only seemed to make me feel worse. On the way to church that night, it was clear that I was "coming down with something" when I drew my knee up to my face and found my face so hot that it left a red mark on my leg. The group I had ridden with could tell just how sick I was by the end of service and skipped our normal junk food run to drive me back to the dorm, weak, shivering, shaking, teeth chattering. I collapsed into bed and don't remember much of the next month. I made it to most of my classes, pushed through homework in survival mode and SLEPT and SLEPT and SLEPT.

I was constantly nauseated and the only foods I could stomach from the cafeteria were cottage cheese, bacon bits and tomatoes, and an occasional bagel with cream cheese. I had sudden aversion to most other foods. (To this day I will not happily touch a raisin, something I had regularly enjoyed snacking on prior to getting sick.) About half the campus seemed to have the same "bug". Many were diagnosed with mono. Everyone else seemed pretty much back on their feet with regular eating and sleeping patterns within 2-3 weeks. My fevers and pain and mental muddiness lingered all semester. (I eventually learned of a few other students who had dropped out of school due to this illness, but I did not know that at the time.) It seemed I alone suffered an immune system unable to do it's job and shake this thing that had been going around.

In God's grace, I met Rick in the midst of those very dark days. My only real memories of those next months revolve around hours spent with him. The night I met him stands out (Oct. 20) stands out mostly because I turned him down for his invitation to go out for coffee (I don't drink coffee) but ended up getting stuck talking with one of his room mates until midnight that night and was so sick the following week for my foolish late hours. Rick had played it smooth and actually asked a whole group of us out in hopes of getting to know me and I had been the only one to decline so he ended up taking a group of several of my friends out that night and he got food poisoning from his nachos at Denney's!

Our "dates" were often spent sitting at a group of picnic table under the massive limbs of old Oak trees in the middle of campus. He would sit by my side, rubbing my aching back and watching me sleep, smiling as I sort of woke up enough to carry on some conversation before laying my head down on the table and drifting back into the clutches of exhaustion. He would sketch my picture and tell me stories that would make me laugh. By Christmas he had already asked my Dad's permission to ask me to become his wife! I still am in awe that God would give me such a treasure as this man who could see past my illness to my heart and embrace me in sickness without ever knowing me in health...

I went home and slept through all 3 weeks of Christmas break. After Mom's TLC and home cooking (that I tolerated so much better than cafeteria choices), I went back for a second semester of college, thinking I had finally kicked the "bug". We rationalized that it had just been the shock of dorm life and the stress of college lifestyle that had prevented me from recovering for all those months, but now all was well. Within 36 hours of being back on campus, the fevers and nausea hit again and the nightmare started all over. The pain that had wracked my body for the previous months came back with a vengeance and now my hormones seemed profoundly effected as well, aggravating my previously well-controlled Endometriosis, requiring adjustments in my hormonal therapy, and sending me into cyclic panic attacks.

Second semester was more of a blur than the first had been. It was becoming painfully, fearfully evident that I had more than just a flu that needed time to resolve. I was repeatedly tested for mono and that seemed the likely culprit, but my lab results were so a-typical, and my symptoms so complex and confounding, that the local clinic couldn't figure out what to do with me. Though I frequently fell asleep in class, I tried hard to take good notes because I knew I couldn't trust myself to retain information otherwise. Rick took my class notes and studied for my exams for me, giving me "cram" note cards to feverishly review for 10 minutes before sending me into take tests.

Rick walked me to every class and met me afterward to be sure I got back to my dorm before I collapsed. Sometimes he would drive me to the far end of campus, handing me a sour apple jolly rancher stick (another food I finally discovered I could tolerate) he had melted into the shape of a heart, to ease my continually raw and aching throat, before dropping me off for class. My parents, who were understandably worried, frequently drove 4 hours to help when they could, typing term papers I had scribbled from my bed and bringing comforts of home. The semester seemed endless and only God's grace, Rick's constant encouragement and my parents ongoing support allowed me to continue pushing forward.

Summer arrived with mixed emotions. Such relief to be done with that first year. Such grief to know Rick and I would spend the summer apart. I moved back home to my parents and finally hit my limit. Other than the doctor's appointments they frequently drove me to, I slept away most of the summer, at least 18 and as much as 23 1/2 hours out of every 24 hours in a near-comatose state. My mom reports that she nearly called 911 on more than one occasion because I would sleep so deeply that I was unresponsive even to being shaken and her frantic yelling to see if I was still breathing.

I would fight to wake up, dreaming over and over that I knew I was asleep and needed to wake up and would struggle with everything in me to force myself to open my eyes, to move my body, to jolt myself to wakefulness, but could not. I would then dream that I had actually managed to wake up and was relieved simply that my eyes had finally cooperated in opening for me, only to discover that no, I was actually still asleep and the fight started all over again. I would have these vivid struggle to wake up dreams in repetitive cycles of 8 or 10 times in a row before I finally truly could awake, drenched in sweat and exhausted from the effort of having worked so hard to simply claw free of the clutches of sleep and finally be victorious in getting my eyes to actually pop open in an instant of wakefulness. (To this day I can still fall into these dreaming I've awoken only to find I'm still asleep and fighting for wakefulness cycles, thought thankfully they are no longer a daily battle.)

My main memory from that season was the acquisition of many new phobias (I had un-squeamishly played with spiders all through my growing up years, and now went into a panic as a harmless little guy crawled across my bed one day) and a continued struggle with pain and monster hormonal/mood swings. I literally felt like I lived in a fog, that to look out through my eyes was like trying to look out at the world down a long tunnel. I could only cope with focusing on one stimulation at any given time - one voice, one sound, one face, one input - I sometime could watch t.v. or read, if everything else around me was quiet. Anything more and I was overwhelmed. I asked for ear plugs and often had to close my eyes simply because it took too much effort to process the visual or auditory stimulation.

Obviously I did not get a job the summer of 1991. Neither did I return to college the fall of 1991. By the spring of 1992 it seemed I was finally "getting better". After all, I had learned to cope with the chronic nausea and tight throat so was eating more consistently. (My personal mantra became "food equals energy" because of the very brief energy boost I could sometimes obtain by eating. Between that theory and the constant abdominal pain that felt much like hunger, I rapidly gain 40 pounds and outgrew my wedding dress before our wedding.) I could actually get out of bed on my own now, was only sleeping 14-16 hours most days, could even take a brief shower or two without assistance each week (though that effort would put me back in bed for the rest of the day).

Rick and I ached to be back together so I moved back to southern CA to "nanny" for a family from our church with the intention that we would receive premarital counseling from one of our college professors. Looking back on my time living with this family I primarily feel an overwhelming sense of guilt because I took so much more than I gave, often failing in my obligations to be available to care for their children when needed, but freely helping myself to their generosity of providing food and shelter and often hosting Rick for meals so we could be together as well.

Rick and I married in August, 1992. We planned a brief but beautiful service and my huge accomplishment was that I actually was able to walk down the isle on my Daddy's arm and stand through the service. All our wedding pictures where I appear to be standing next to Rick, I was actually seated on a bar stool with my hoop skirt (of my second wedding dress!) covering down around it so that I was close to my standing height but could be sitting. I spent our honeymoon in a wheelchair. The first years of our marriage I still spent the majority of every day in bed (bed-bound about 4-5 days of the week) and was primarily housebound for about the first 5 years of our marriage.

Rick took me to church most Sundays and I sometimes would go hang out in the our store for a change of pace, but beyond that I rarely left home. Gradually I learned to drive again, as far as the grocery store, but couldn't be on my feet long or I wouldn't have the energy to drive home again. By about our 5th anniversary (or around 7 years after first becoming ill) I could finally drive myself to a town half an hour away about once every week or two and even joined a weekly Bible study with Rick. I made one attempt at a drive an hour and a half from home one time and quickly learned that was well beyond my limitations!

I attempted part time work for a few very brief periods over those years but always landed myself back down hard in bed for a long stretch within a week of even trying to work outside our home. Our long-awaited son was born 7 1/2 years into our marriage and I learned a quiet but consistent schedule that allowed us to lead what seemed to me to be an amazingly "normal" life, including a weekly MOPS (play group) meeting. At my very best I got up to about 70%, or maybe on my very best days 80% functional, compared to my life prior to illness, still with ongoing setbacks day-to-day.

There has never been a day in the past 20 years where CFIDS did not impact my life on at least some level, but there was a beautiful season of several years where, overall, my health concerns were on the back-burner and I could move through life and think of myself as a pretty normal person. This is not to say I was ever symptom-free, and I certainly had setbacks like moving into a new house nearly 6 years ago and spending that entire first year quite sick from new carpet and pain smells, triggering multiple viral and bacterial infections and a new battle with asthma. But through my season of "better" years, Hannah's Prayer Ministries flourished under the hours I poured into it, we were blessed with three living children (now 10, 7 and 4, with birthdays upcoming in December and January), and I wrote my first book.

I started noticing some strange symptoms that concerned me after the births of our daughter in 2003 and even more so after our youngest son in 2006, tingling sensations in my arms and legs, loss of grasp, and other mild "MS-like" symptoms, but doctors couldn't find anything of significance. In the spring of 2007, when our youngest was 16-months old, life dramatically changed once again. We were excited to enjoy a family vacation to Disneyland. We went with my husband's parents so we had four adults to care for three children. They spoiled us with the gift of a hotel room right on the Disney property so everything was easy and accessible. I tried to pace myself, but woke up significantly dragging and visibly limping the second day. We rented a wheelchair and I pushed on, staying in bed for a large portion of our third/final day.

It was all too much. I came home and landed down hard in bed for the next 5 months. It has been an ongoing daily battle every day since. The MS-like issues have escalated with involuntary muscle twitching at rest, and many random nerve sensations ranging from pain to tingling to numbness. I battle vertigo frequently and when I'm especially tired I drag one foot when trying to walk. I rarely leave the house without a wheelchair and often hold my hands out for balance when walking in my own home. I completed a survey this week that helped me see that my current ability is around 35-40% of my pre-illness ability, and that's a marked improvement from those first earliest years as well as the setback that had me in bed for much of 2007. I grieve that my children are growing up without ever knowing the mom I so long to be.

20 years ago today I woke up feeling (relatively - see here for background) great. And then life changed...

I Hope You Dance videos

2010-09-13T09:13:00.000-07:00

Here were the three professions videos that were played on the big screens at I Hope You Dance last Friday night!

The family pictured here on the still shot for the following video, the twin girls Addi and Cassi, are a local family I've posted about on this blog in the past. I know their cousin well, and have talked with their mom via phone and email several times.

You can see me a quick shot of me giving Andrea a hug from my wheel chair at the WPI community day open house last month in this next one, at about minute 1:46 - 1:48. ;)

Hearts Dancing with Hope

2010-09-12T22:49:00.000-07:00

Thanks to the amazing generosity of friends, Rick and I were once again able to attend Whittemore Peterson Institute's (WPI) "I Hope You Dance" gala this past Friday night.

This was the 6th year this event has been held in Reno, Nevada, and our second year we were blessed to attend. To all who made this dream possible for us, thank you!

For those of you who have no idea why I'm so excited about WPI in the first place, check out my previous posts on What's a Retrovirus? and this poem describing my experience with "Chronic Fatigue Syndrome" or better-named XMRV-Associated Neuro-immune Disease (XAND). Here's what WPI has to say both about themselves and about XMRV.

For those who wished they could attend and were unable due to health or distance, you were not forgotten! This chair was purchased in your honor by Kathryn Stephens and photo is courtesy of Angel Mac.

Our night started when Rick's mom came to pick up the kids for a long weekend with Grandma and Papa at the farm in Fallon and Rick got home, all happening just before 5 Friday night. I had washed my hair early in the day, knowing it would be an energy expense that would take several hours to recover from. Steam rollers went in pretty quickly (thankful;y my arms held out long enough to roll my hair without searing with so much pain I had to stop half way through - a casual upsweep in a pretty clippy was my backup plan) and I slipped on the comfy yet elegant dress provided by sweet Tink. I wasn't sure if I could get my broken toe into my calf-length leather boots but was pleasantly surprised that the swelling was down enough to make it relatively comfortable. Rick was in a western shirt, blue jeans, his favorite orange coyboy boots and a dashing black felt coyboy hat before loading my wheelchair into the car. We were out the door a little before 5:30 and to the Peppermill's Tuscany Ballroom by about 10 'til 6.

Patient advocates had worked hard to identify known patients in attendance and we were amazed when we walked up to the registration desk and mentioned our last name and they knew our first names without even looking us up, quickly assigning us to "table number one" where we were thrilled to be seated next to the architect of the WPI building on one side and Andrea Whittemore Goad's best friend since childhood on the other! As far as I know, all Facebook patients in attendance were carefully seated at one of three tables right up near the front.

But talking about our table is getting a little bit ahead of myself. Upon receiving our seating assignment, we walked through double doors into a large room with shiny orange tablecloths and floral centerpieces. A large table of Hors D'oeuvres was stationed in the center of the room, silent auction items were gracefully displaced in a loose circle of tables around that center station, open bars were hosted on each side of the room, and small shimmering orange draped tables were clustered in comfortable seating areas all around the room. There were young ladies walking through the gathering offering raffle tickets for the evening's grand prize of $1,000. (The woman who won the raffle at the end of the night very graciously walked up to Harvey Wittemore and immediately gifted the money right back to the institute).

Rick wheeled me over to the bar where we each got cranberry juices and I took my share of good-natured teasing for being a "double-fisted drinker" as I held both glasses so his hands were free to guide my chair. I believe there was also an old fashioned photo booth and some other attractions in that front room, but we soon spotted Dr. Judy Mikovitz and her husband David and chatted with them for a bit before getting a few light snacks and await dinner call.

We hadn't been sitting at the cocktail table for more than a few minutes before Heidi Dunlap Bauer (bottom left) walked over and introduced herself. We got to sit and chat for a while and then I looked up to see Lisa Jensen Kitzmiller (top left) who surprised me because they weren't thinking they were going to make it. I made introductions around and then walked up Etel Barborka and Terri Farley (top right, with WhatAboutME.biz). I didn't get a chance to more than wave at Etel (we might have posed for a picture on her camera - I can't really remember) and about the same time I got to wave and Andrea Whittemore Goad and spotted Dr. Peterson across the room, but didn't get to actually talk to either of them. Heidi, Lisa, Terri and I snapped chatted (Rick got to visit with Lisa's husband and snap some pictures) then much too quickly the grand satin curtains were drawn back and we were invited to our tables. Here's a quick tour of the dinning room:

So here we are, seated next to the architect of the Whittemore Peterson Institute building, Dr. Judy's sitting at the next table over, and we are invited to the scrumptious buffet line and Karen Campbell ran right up and gave me a huge hug. I didn't get beyond salads, sushi and all-you-can-eat crab legs. Rick enjoyed the carving station, especially the prime rib with horseradish cream. He said the risotto was great too. I'm afraid I lost interest in "real" foods as desert plates started showing up at the table. I'd been too overwhelmed with the grandness of the entire affair to think to pull out my camera for the main courses, but Rick reminded me to snap pictures of the chocolate!

While we were enjoying all this amazing food, a celebration was happening on stage as Annette and several honorees gave brief speeches. There were three professional videos shared on the big screens through the course of the evening (you can see me giving Andrea a hug from my wheelchair in one of them). Of course the highlight for us as patients was when Andrea Whittemore introduced Heidi Bauer and she shared her heartfelt passion for advocacy in hopes of keeping her 7-year-old triplets healthy for the future:

As the formal program came to a close everyone started to mingle. One more quick visit with Lisa and then I met Nelcha/Angle Mac (right) and got to reconnect with a sweet lady (left) I had previously met at the WPI community day. I'm sad to say I still don't know her name or have any contact information and she took off pretty quickly because the loud music was making her ill, but she is a 25-year survivor and someone I hope to get another chance to connect with, maybe at mutual patients at WPI in the future.

Then Karen Campbell came back over and we got to snap some pictures, visit a bit, and then she introduced me to wheelchair dancing, whirling me around as she used to do with patients at a nursing home where she volunteered before she got sick. It was too exhausting (and dizzying) for more than one song, but a fun experience that had me giggling!

On more quick visit with Heidi, another brief wave toward Andrea, a final goodbye to Dr. Judy and David, and another chat with Nelcha, and the magical evening was over. I couldn't believe it was 11pm when we got home! The night went by so fast, and though the music was at time too loud for comfort (some of us patients were ripping up paper napkins to stuff in our ears - should have gotten a picture of that! LOL), and of course the stimulation of so many people in and of itself is draining, it was a fairytale night and I felt like Cinderella, amazed that "midnight" came so quickly!

We crashed hard and fast and didn't even try to get out of bed all day yesterday. We did attempt church this morning, but I only lasted about half an hour before we had to turn around and come home (thanks to a severe asthma attack). I'm definitely "paying" for my big night out, but it's one of those special memories I'll treasure and well worth the energy expense. Thank you again, to everyone who made it possible for us to be part of this delightful celebration!

As I finish this post it seems only proper to mention that National Invisible Chronic Illness Awareness Week is just kicking off. The founder of this event, Lisa Copen, has been a dear personal friend of mine for 10 years or longer. I'm so amazed at her ongoing crusade to bring understanding, encouragement and support to all of us who live under the daily shadow of unseen, and typically misunderstood, pain and illnesses such as neuro-immune diseases and many more. Please take a moment to check out the daily virtual conference broadcasts and so much more at InvisibleIllnessWeek.com now. :) You can even sign up for daily encouragement emails and, for a limited time, will receive an 80-page eBook offering 263 tips on living well with chronic pain/illness, compiled by 20 experts with personal experience. I was honored to to have 10 of my own tips on homeschooling as a chronically ill mom included in this comprehensive collection.

New School Year

2010-08-31T10:18:00.000-07:00

We started school a week ago with a 6th grader, 2nd grader, and 4 1/2 year old dipping his toes into K (we usually do K and 1st over a 3-year span). We are sticking with our tried and beloved My Father's World program that we've used since the 6th grader started K, along with Math U See. In January we will also be adding Rosetta Stone Spanish to the mix. The kids and I have set a goal to memorize the entire book of James this year. Emotionally I'm very excited about the new year! Physically, I'm really dragging and would appreciate your prayers for strength and grace.

It's going to be a busy year for our kids. Our older two are entering First Lego League robotics competitions for the first time (hubby will be managing most of their involvement in this program), we'll have homeschol co-op (2 hours on Thursday afternoons, my one planned weekly outing outside of church, usually accomplished in a wheel chair), AWANAs (the kids are going with a friend to their church on Wednesday nights, so no transportation required of me this year), and our church is launching Pioneer Clubs (every other Tuesday night). It is so hard to find the balance between being a hands-on mom who doesn't want to miss these quickly passing moments of my kids growing up years, and doing what I need to do for myself and my health. I'm so thankful for friends who help along the way. I've only got one chance at this mothering thing and I so yearn to do it well, but it's so hard when I'm always so sick.

Outside of kid activities, I'm helping our pastor's wife organize a pregnancy/ infant loss remembrance event sometime around Oct. 15. I'm also still traveling back and forth to Stanford for medical treatment and am hopeful I may be pulled into local clinical trials sometime later this fall or winter. And painfully slowly, I'm continuing to make baby steps of progress on my book on the life of Paul and living with chronic pain/illness.

Lord, please give us your strength to keep in all in balance, to your glory, this year! I'm so weak and weary...

XMRV has a family!

2010-08-25T21:28:00.000-07:00

Long-awaited news hit the airwaves this week with the publication of a positive replication study confirms WPI's findings linking CFS to a new retrovirus!!! Actually, to be clear, it wasn't specifically XMRV that was found in the FDA's study, but a whole family of closely related viruses known as murine leukemia virus (MLV)-related viruses or MRVs (for MLV-Related Viruses). This could be one more reason why four other studies after the October Science publication failed to find XMRV. To understand the implications of all this, here's Dr. Judy Mikovitz, the head of WPI's research department:

Additional clarification can be found at X Marks the Spot? from today's Wall Street Journal, stating in part, "Researchers led by NIH infectious diseases specialist Harvey Alter found a family of retroviruses called MLV-related viruses in a majority of CFS patients. X[MRV] is a member of that family. But the Alter team found that the strains of virus in the patients that they tested were closer to another branch of the same family — viruses known as polytropic MLVs (you got it — shortened to “P”) — than to X."

The above article later states that CFS may turn out to be "a constellation of diseases, only a proportion of which will be shown to be associated with XMRV/MLV." Another possibility is that "CFS could end up looking more like hepatitis...in that patients have similar symptoms that are caused by five distinct viruses." AS WPI has continued studying their samples since the October Science publication they have found "almost all of them are positive for one or more MLV-related viruses, including X and P."

Grand Opening

2010-08-21T17:10:00.000-07:00

Congratulations to the Whittemore Peterson Institute in Reno, Nevada for their grand opening today! I was in tears (and not so quietly, I might add!) before the welcoming announcements were half over. The beautiful building feels spa-like but the research happening at this first-of-its-kind facility is life-changing. I can't wait for the actual clinical phase to open and for patients like me to start seeing doctors. To share a clear idea of what this all means to me personally, please take a moment to read my XMRV poem.

What a joy to see Andrea, Dr. Judy, meet Facebook friend Lisa, and just be blown away by the sheer size and scope of all this building and all the plans for its use. My dear friend, Veronica, was such a blessing and delight to share this experience with. She drove me and pushed my wheelchair (except for the short "hijacking" by a friendly older gentleman who must have thought I was all on my own and "helped" me out of the elevator and half way down the hall before she could catch back up with us - LOL). It was a beautiful, emotional, exhausting, hope-filled morning. I've been in bed (now with hives) all afternoon as a result, but the energy expense was well worth the emotional boost of hope.

P.S. I'm still raising money to attend the WPI's fundraiser gala next month, in support of ongoing research. Will you help me "dance"? Details at http://infertilitymom.blogspot.com/2010/07/can-you-help.html

Lots of XMRV updates!

2010-08-19T14:27:00.000-07:00

Wow, things are moving fast now. Hard to even know where to start!!! (If you don't know what I'm talking about when I mention XMRV, you will want to start here so you understand the rest of this post.)

First of all, you may remember my discouragement just a short time ago and the apparent government cover up of XMRV research confirmation. Well, guess what? It's out in the open now! Yes, front page headlines this week have read, "Finding by Reno Scientists Confirmed by US Government"! XMRV has been found via replication study and it's finally made mainline news. Help and hope for real treatment are a significant step closer to reality now. I'm giddy with excitement!

I plan to attend the grand opening of the actual building that now houses Whittemore Peterson Institute for Neuro-Immune Disease (WPI) on Saturday. I'll be there by wheelchair, but I'll do everything in my power to at least be there! I am still very hopeful about also attending their fundraising gala next month, but I still need to raise over $300 by the end of the month to make this goal. (Thank you to the handful of friends who have helped me raise a portion of the needed $500 total so far! If you are able to help me with even a couple of dollars, I would greatly appreciate it.) If I do not raise enough to purchase the two tickets, I will still be donating every penny I do raise directly to WPI for ongoing XMRV research.

Speaking of XMRV, that name may not be the one we continue speaking for the long term. I don't have any additional information nor confirmation at this time, but according to a post made this morning on the Phoenix Rising forums, HGRV- Human Gamma Retro Virus (thus illness caused by this infection is HGRAD- Human Gamma Retrovirus Associated Disease) will be the new name announced next month. This name more accurately reflects the medical and scientific realities of the cause and course of this virus (and might I note, it roll off the tongue a whole lot easier than Xenotropic Murine Leukemia Virus-Related Virus Associated Neuro-immune Disease)! It will be interesting to see what comes of this potential change and I'll do my best to keep you informed as any updates are available.

The text of the posted letter, attributed to Dr. Joseph J. Burrascano Jr. of New York reads:

Hello all from Dr. B.
I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV.
We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly.
Big news that everyone should know and adopt is that we have proposed a name change for the virus.
This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection).
Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.
We plan to announce this at the upcoming NIH retroviral conference this September.
Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.

Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA

Update on potential name change as of Aug. 20, 2010, as posted to Andrea Whittemore's Facebook wall:
Speculation and rumour about a name change is just that Speculation and Rumour . Discussions about name changes are up to the Government !!!!

My Health

2010-08-19T13:28:00.000-07:00

Realized I hadn't taken the time to update on a handful of health issues I've mentioned here in past week. Most excitingly, the biopsy came back clear on the section the cut out of my scalp a couple weeks back. Praising the Lord for NO CANCER!

My abdominal pain has significantly improved and currently only seems to give me issues if I'm "stressed" (for my body all that might take is simply being around a group of people that I enjoy being with because stress can just mean anything beyond my limited physical tolerance thresholds) but overall seems significantly self-resolved. About the time of my HIDA scan I also ran out of a cranberry supplement I've been taking for the last couple of years for urinary tract issues - I never started them again because the resolution in pain seemed closely tied to the timing of stopping these pills, so I'm highly suspecting there may have been a link in my body not being able to process them well? For whatever the reason, again I'm thankful to God for His hand in allowing me to avoid surgery or further immediate testing.

For a little over a week I've had a fairly constant "pill stuck in my throat" sensation. Not typical CFS sore throat, not anything choking me enough to cut off air, but it just feels like a pill didn't swallow and is sitting there. It's worse after I actually take pills (not so much when I'm swallowing to eat) and is getting more persistent by the day. So far the potential explanations offered to me have been swollen lymph nodes, viral activation causing a temporary ulcer in my throat, "cricopharyngeal dysfunction" where a muscle (annoyingly, but harmlessly) constricts in the throat when it shouldn't, or heartburn. All of these ideas have been presented by others who have experienced similar sensations and these were the various answers given them by their doctors. If it continues to worsen, I'll go talk to my own doctor and see what she has to add. Since none of the possibilities sound too serious and I can live with the issue at its current level of annoyance, I'll just wait it out for a while, but it sure does feel odd.

Oh, and I almost forgot. I dropped a PAPERBACK book on my baby toe yesterday and broke it...

Perfection Trap

2010-08-17T10:44:00.000-07:00

Just a few weeks ago I admitted my perfectionistic tendencies. Since then I have been slowly, imperfectly (as in not every day, not consistently, not to my exacting expectations of what good Christian "quiet time" or "devotional" time should look like - gasp) working my way through Biblical references to the word "perfect". There have been days where I am humbled and challenged by the process, and times when this study has been quite liberating.

Amazingly I've been excited and surprised to see how closely this study falls hand-in-hand with all I'm learning as I work on writing my book on Paul about living with chronic pain/illness. Today, as I was tweaking some things in my book introduction I was stunned to realize that a key verse I had chosen months ago for the opening section of the book is one that falls right into my study on perfectionism:

“Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me.”
- Philippians 3:12 (NIV)

I love it when God so beautifully orchestrates and intertwines so many different aspects of my life, all to teach me more about Himself and His loving, personal grace toward me. In celebration and recognition of God's ongoing work in my heart, I'm adding the word perfect to my growing list of life theme words today.

What's a Retrovirus?

2010-08-16T11:48:00.000-07:00

I frequently reference the retrovirus XMRV here. (See update on possible upcoming name change from XMRV to HGRV.) Some may wonder (as I did less than a year ago!), "What exactly is a retrovirus? How does it differ from your standard old virus?" In short, a retrovirus is a "super" virus that actually writes itself directly into a person's DNA, for life. The only other two known infectious human retroviruses are HTLV (linked to a form of leukemia) and HIV (linked to AIDS). I have also written a poem describing my life with XMRV.

Not written by me, but I found some very helpful and detailed information outlining XMRV and explaining things like the way XMRV is to XAND as HIV is to AIDS. Here's also a great audio interview explaining in simple language about Chronic Fatigue Syndrome (CFS) and XMRV by Hillary Johnson, author of Osler's Web, recently recorded with "A Conversation of Hope".

Since it's been a while, I'm also going to revisit a previous post and highlight a few specifics of my story...

My story (in limited characters for Facebook posting purposes)...
Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...
Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:
Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at http://www.xandxmrv.com/.

Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Instead of "opening the can of worms" of acknowledging this potentially massive public health threat, most would rather sweep it under the carpet (as they have been doing for a good 25 years), classify it is a mental/psychiatric disorder (rather than physical illness), or just ignore it all together.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. I posted additional/updated information on July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.

Sugar

2010-08-16T08:29:00.000-07:00

I love sugar. Full-on crave it. Eat it a lot. Truly enjoy it.

I know it's not great for me. I know I would feel at least some better, overall, if I didn't eat it. But it brings pleasure in the moment so it's really hard to convince myself that I will "feel better" if I don't indulge in that palm full of chocolate chips and a peanut butter dipped spoon when I need an energy pick-me-up!

This past weekend I read through a book on how the body's healing processes work and what causes them not to work. There were some issues I definitely agree with, others I really question the author's conclusions, and a few I will have to research more and prayerfully draw my own conclusions. But one point I couldn't really argue with in his logic was his explanation of how refined sugar is such a huge culprit in the breakdown of the immune system.

Believe me, I wanted to disbelieve those points, but something I already "knew" was finally presented in such a way as to make me really sit up and take notice. For years I've been told that "sugar is bad for the immune system" but now I finally better understand the whys and how of what sugar does to my body. sigh

I've often said if someone could come into my home and do my meal planning and cooking for me, I would really give gluten free and other such dietary limitations a go. Guess I need to add sugar-free to that list of foods I wish a personal chef could come rid from our family life! It's so frustrating to feel so sick that I barely function to get any kinds of meals together for my family, so I default to the "easy" (i.e. often least healthy) options. But if our food is adding to our feelings of ill health, that puts me in a vicious cycle of not being well enough to take the steps to encourage better eating that leads to more energy to do things better.

So after reading all this and taking the time to "digest" some of this news, I woke up praying this morning about what kinds of changes I can make. My personality is the kind where I could easily go on a rampage, rid the entire house of all sugar for a few weeks (or maybe even last a few months), put my family through withdrawls, then make one tiny slip and give the whole thing up, falling right back into our current lifestyle. Since those aren't the end results I'm looking for, I know I'll have to start small, but I want to start somewhere. With these thoughts and prayers spinning around in my head, here's the verse of the day sitting in my inbox when I open my email:

Since we have these promises, dear friends, let us purify ourselves from everything that contaminates body and spirit, perfecting holiness out of reverence for God.
- 2 Corinthians 7:1

Somehow it's easier to trust God to help me purify my spirit than my body I think. Lord, I guess you can't be more clear than that! Out of reverence to You, please show me, one step at a time, how to better treat my body, Your Temple, with the day to day food choices I make for myself and for my family.

I am not disillusioned into thinking that all I have to do is change some dietary habits and I'll be fully well as a result. (The book I was reading would have me believe so!) A retrovirus is serious stuff and I know many a friend with much better dietary habits who are still just as sick as I am, or even sicker. But I do believe every step I can make toward giving my body the best environment toward healing is a step in the right direction. Healing is ultimately in the hands of the Lord, but if He is calling and confirming to me the need to make wiser choices in what I eat, it's an act of obedience for me to listen to that call.

18 years! :)

2010-08-15T13:30:00.000-07:00

Rick, thank you for walking down the isle with me 18 years ago today. You are more of a blessing than I can say. Thank you for sharing your life with me!

Join Me?

2010-08-09T10:06:00.000-07:00

I need five homeschooling friends to check out

Homeschooling's
#1 Way to Save

and sign up for a free account, please. :) It's a great place to find wonderful prices on amazing programs and materials. We recently bought our Rosetta Stone at an 18% discount and earned "points" to redeem on other HSBC products on top of that!

I'm currently just 500 points shy of being able to receive Simply Music's Learn-at-Home DVD Program for Piano for FREE and can quickly earn those points if just five friends will sign up for accounts (as I get 100 points for each friend who registers through my link and you each get 100 points yourself just for registering). Any takers? Thanks so much! :D

The Homeschool Buyer Co-op is a free homeschooling organization for both new and veteran homeschoolers. Co-op membership is free and confidential, and entitles homeschooling families to discounts from over a hundred educational suppliers. They also sponsor "Group Buys" for curriculum packages that save homerschooling families lots of money. On the site you'll find lots of free information, such as databases of free curriculum, field trips, and educational contests and scholarships. Highly recommended. Click here for more information.

And while I'm "recruiting" I'll also tell you about eBates! It's a cash back program for doing online shopping from thousands of stores you probably already shop anyway. You can earn typically from 1-6% back on purchases, sometimes special offers will be made for 10% or more, or other flat incentives like $6 back on an Entertainment Book purchase. Stores include online merchants like eBay as well as more traditional places like Target, Barnes and Noble, WalMart, JCPenney, Dell and so much more. (With eBay I also earn eBay bucks, so I end up getting percentages back from every purchase through two different programs!) I joined eBates before Christmas '08 and do most of my gift shopping online. Without being aggressive about it (just trying to remember to start at their link before heading to a shopping website I was already heading to anyway), I've earned over $85 in cash rebates since I joined. Right now they are offering an incentive that if I can get 50 friends to sign up, I'll get a free Apple iPad or my choice of $500 bonus cash instead!

4isims

2010-08-07T18:42:00.000-07:00

4-year-old just stepped out of the shower, handed me his towel and asked, "Mom, can you get me un-wet?" This is the same child who will loudly inform you that he is "allergic of dogs" any time a canine comes within sight.
His swim trunks (I call it a swimming suit but his Daddy calls them "trunks") are "trunkers" according to our Little Bear. Just love this kid and his cute word choices.

Birthday Joy

2010-07-31T09:08:00.000-07:00

If by some Infinite Design that far exceeds my cloudy, limited understanding, that "great cloud of witnesses" that surrounds us includes the children who have proceeded us to Heaven, I think my babies must delight in my overflowing joy today.

Noel Alexis, our first (who would be 15 next month!) was our "minister of needs". Joel Samuel reminded us that the Lord would redeem/repay the years the locusts had eaten. He was asked of the Lord and we eagerly await reunion. Hannah Rose, our beautiful daughter who did not get to "bloom this side of the fence" was due just a year before her still-earth-bound sister, Princess R, was born. I look at one and can't help think of the other, but while the tears still occasionally come, my heart more and more delights in the unique beauty of each daughter and I can be thankful for my joy in parenting R and in Hannah's joy in daily seeing our perfect Father face-to-face.

I'm 38 today, 2 weeks out from our 18th wedding anniversary that basically was the beginning our of journey to parenthood (we started actively TTC by November). My yet-earth-bound miracles are 10 1/2, 7 1/2, 4 1/2. God truly has redeemed those broken, bitter years. My amazing husband and these three precious joy-bringers greeted me with birthday singing and gifts and (most treasured of all) handmade birthday cards before I was even out of bed this morning. My heart overflows with blessings!

I cannot mark any significant landmark without my heart and mind flying, at least for an instant, to those who are not here to share the day. I will not pretend that the tears of sorrow in parting do not still occasionally flow. But if they can see me, I think they are joyfully thanking the Father right alongside me for the healing He has worked in my heart! God is good, all the time. Praise His holy Name!!!

17-years ago CFS

2010-07-30T12:49:00.000-07:00

17 years after this documentary was made, little has changed politically regarding Chronic Fatigue Syndrome.

More on XMRV

2010-07-26T14:54:00.000-07:00

I haven't been keeping friends very well updated on XMRV news. In part I feel discouraged. While the National Institute of Health (NIH) and Food and Drug Administration (FDA) have confirmed the findings of Whittemore Peterson Institute (WPI) as published last October, the Centers for Disease Control (CDC) has come out with a very public statement that they were unable to find XMRV at all. The NIH/FDA paper not only confirms the original findings, but strengthen them, but the Department of Health and Human Services (HHS) made the ultimate decision to hold up the official publication of their study even after it had passed peer review and was accepted for publication, a very unusual move.

Our government has ordered the withholding of the paper by both NIH and FDA but allowed the opposing CDC publication. *sigh* Now, honestly, the CDC has over 20 years of track record of doing everything they can to discredit Chronic Fatigue Syndrome as a real, physical illness, so their newest publication and the suppression of opposing findings shouldn't surprise me, but it does disappoint me deeply. For a great time line clearly explaining all the back story check out CFS Central's A Commotion in the Blood: Timeline & Bloodline where you will find a very simple unfolding of all that's happened over the years, presented in a wonderfully understandable time line that will simply make your heart sick!

This is why it's so very important to me that WPI be able to continue their work. This is why it's my goal to raise $500 before the end of August so that I can attend their "I Hope You Dance" fundraiser gala. If our government is willing to endanger the general population by suppressing valid scientific findings, then private research is imperative! (I would so greatly appreciate it if you would consider making a small contribution through my ChipIn link, or you can paypal directly to jsaake AT yahoo DOT com with WPI in the subject line if you would like to help fulfill my birthday wish to be able to purchase these tickets.)

On a personal front, I'm coping with ongoing medical mysteries within my body. I've had classic symptoms of gal stones off and on for about 3 years, with a lot of problems the past few months. My ultrasound last week was "normal and unremarkable" so we are awaiting an HIDA scan (but the hospital is currently backlogged by an entire week). Was thinking I might end up having surgery before my birthday (this coming weekend) but at this point, unless we get to the point of medical crisis (we were almost there last week but symptoms are currently somewhat improved) I won't even have the scan to determine our next step until at least next Monday. In the midst of it all, my dearly beloved primary care physician is out of town for a solid 3 weeks, so we've been trying to run this all through the support staff in her office.

Next week I also see a dermatologist to evaluate possible skin cancer. I also have a referral to a counselor just to talk about how to cope with all this, but I haven't had the energy to even make that appointment yet. It's something I've been avoiding because I feel like I'm living at doctor's offices these days and I'm just too exhausted to take on the emotional process of getting started with yet another "project," (in this case, my emotional and mental health) though I know it's something I need to make a priority and just do. Would love to get the tummy issues resolved so I have the time and energy to focus on other things.

On the fun side, our 7-year-old has now lost all 4 front teeth and has an adorable hole right in the middle of her smile. The 4th came out last Wednesday. On Saturday our 10-year-old showed me he had a wiggly tooth too, so I reached out to gently feel it and literally pushed it right out! He can now tell his friends that his mom knocked his (9th) tooth out. :P Our poor little 4-year-old is feeling very left out of the whole tooth-loosing experience at the moment, but his time will come. :) We have all enjoyed our first week of "summer vacation" (tummy pain and nausea aside) but are actually already looking forward to starting Exploration to the 1850s and Kindergarten again by the end of August.

Can You Help?

2010-07-21T19:12:00.000-07:00

Thank you so much for helping me raise nearly $500 last year to attend the Whittemore Peterson Institute (WPI)'s "I Hope You Dance" fundraiser gala!!! It's that time of year again and with the amazing research advances made by WPI this past year, I'm more anxious than ever to help advance research to find a cure for XMRV/CFS.

Would you please help me in any way you can? Every dollar counts! My goal is $500, the cost of two tickets to attend the fundraising gala, but if I don't make that goal I will forward every dollar raised here directly on to WPI to further their research efforts. I cannot proclaim loudly enough just what a blessing and answer to prayer WPI has already been to me. I am honored to have this small way to "give back" and help provide hope to the potential 1 in 14 who currently carry the third known infectious human retrovirus (same family as HIV), many without even knowing until they face a health crisis and trigger this nasty bug into activation.

Please let me know if you have any questions. :)

2009/10

2010-07-16T18:28:00.000-07:00

Our homeschooling year is finally finished! It's been a great program but due to all my IVIG treatments and medical travel and so forth, there were many weeks when I was able to teach only a few hours in an entire week, so we took over 12 months to finish this one school year. I am so proud of these kids for persevering and finishing well! Thank you, Lord, for the blessing of spending every day with the amazing miracles you have blessed us with and for giving us the joy of learning together.

In case I haven't mentioned it recently, if you are ever looking for an amazing school curriculium, I can't say enough good things about My Father's World. If even this chronically ill mom of three can provide a well-rounded education to my children because of the organization and lay-out of this product, I highly recommend it as a great resource for anyone wondering if they can actually make homeschooling work. :)

Great Gain

2010-07-02T17:11:00.000-07:00

I've gained weight the past year and a half. A lot of weight. I was asked three times last week if I was pregnant because I'm carrying most of that weight right out front in my belly. I had a hysterectomy, then did IVIG and there is no doubt that my hormones are way out of balance. I weight more than 50 pounds more today than I did when I was pregnant with our daughter eight years ago. About 40 of those pounds have been packed on the past 20 months.

I am frustrated. I don't like my body. I don't like getting dressed. I dislike getting undressed even more. I have stacks of clothes I can't get into, some now 3 or 4 sizes too small, that I've been stashing away for when I can get the pound off.

Today I'm choosing a new attitude. Yes, I would still like to shed some weight, for health, for self-esteem, for so many reasons. But the fact is, this is my body right now. The same Holy Spirit lives inside this broken temple who lived here when I was at my healthiest, most fit, most attractive days. I can make choices that will keep this body as well-conditioned as I am able, but honestly some of this is simply beyond my control.

So today I went through all my clothes, those horded away for someday and those still hanging in my closet, many ill-fitting even though I try to still squeeze into them. To my delight I found a few things I honestly didn't think would fit that still work nicely. :) I kept about 5 things that are very near to fitting, just a tiny snug right now, because if I can loose a few pounds and under-grow what I have, I still have a tiny cushion of options before I hit yard sales and consignment stores for smaller sizes.

I sorted and organized all the rest and can walk into my closet and know that absolutely anything I pull off the hanger will fit on this body and I won't have to fight through five or six outfit changes (and accompanying tears and words of self-loathing) just to get dressed in the morning. And as a bonus, I now get to bless some friends with an abundance of clothing that can be enjoyed again, no longer a source of frustration to their owner.

But godliness with contentment is great gain.

- 1 Timothy 6:6

Father, please grant me contentment in my "great gain" that I can have a heart to fully embrace the body you have given me and glorify you with it, just as I am.

Giving Up Perfect?

2010-07-02T10:49:00.000-07:00

I have been anxious lately. The reasons are too many to count, but it all came to a head on Wednesday. As a result, within one hour, three different loved ones individually challenge me to remember that I'm not perfect, I don't have to be perfect, this world is not perfect, and that all this is OK.

What was strange to me about their comments is that I hadn't been noticing a pursuit of perfectionism in my life. And yet, to hear this challenge from three different sets of lips, each unaware that anyone else had already said something similar, tells me that others see the quest for perfection in me.

This leaves me in awe and wondering. So this week I'm exploring exactly what God has to say about perfection. I'll post yesterday's and today's highlights, then won't have computer access for a few days but will keep studying and be back to share soon.

July 1:
Looked at Deuteronomy 32:3-4, 2 Samuel 22 (esp. vs. 31-33), Psalm 19:7-8

Conclusion: God's perfection revives the soul and brings joy to my heart. My quest for perfection brings anxiety.

Prayer: Lord, please teach me to rest in you and let go of my own quest for perfect.

July 2:
Looked at Isaiah 26:3-4, Matthew 5:33-48 (esp. 48)

Conclusion: God commands me to “be perfect”. So what's wrong with perfectionism then? I think it must be motive that God's getting at here. He instructs in specifics of how I am to stand out from the world around me and the why is so that others will see Him reflected in and through me. I can't strive for perfection for perfections' sake. I can strive to live like Christ for the sake of love and out of that flows a more Christ-like life.

Prayer: Father, teach me to let go of my illusions of control that stress me to the breaking point, and instead let me put all that energy into loving my children, my husband, my friends, with your love. I want my heart to be pure before you, bathed in the perfection of your Son's blood. Let me do what I do to your honor and glory, not for the sake of perfection, but for your pleasure, thus bringing me joy, not stress, along the way.

Back to Basics

2010-06-30T17:04:00.000-07:00

I need accountability. I am not making time with the Lord my first priority and how I am feeling it! So (homeschooling mentioned)...

TMI

2010-06-22T19:19:00.000-07:00

I know this is going to be more graphic than some want to read, so consider yourself forewarned. But since I have very little short term memory and since the whole baby book/scrapbooking thing has never happened here, I have to write things down somewhere where they will be enjoyed in the future. Lest I forget, here's a recent story about our 4-year-old Little J.

Rick had been explaining to him that pee was called "#1" and poop is called "#2". So the next evening J. walks into our room and asks, "Daddy, could you please put Toy Story Poop on t.v. for us?"

Ewwwwww! LOL :p

Would Love Your Help!

2010-06-17T09:34:00.000-07:00

My book, Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss has been nominated by the oldest, and one of the largest, infertility support networks in the nation, as one of the top four "best" infertility books for 2010.

Their selections are now open for public vote and I would so appreciate if if you would take a moment and visit www.resolve.org/vote to cast a vote for Hannah's Hope in the "best book" category. Thank you so very much!!! If you have a blog or a facebook/twitter type account and would be willing to pass this along to your friends as well, I would truly appreciate your assistance! Voting closes June 24.

Cancer and Chronic Fatigue

2010-06-14T13:47:00.000-07:00

I recently posted about the potential link between autism and CFS. Today I wanted to mention the immunological similarities between cancer and CFS. It was this shared abnormality in ribonuclease (RNase) L in CFS and in prostate cancer patients that sent researchers actively looking for XMRV in CFS after finding it in a subclass of prostate cancer patients. It is my understanding that there is a notably higher cancer rate among CFS patients than in the general population and perhaps this sheds some light on the reason.

A very interesting lecture (about 15 minutes) about XMRV and specifically prostate cancer (but also mentions CFS several times) is found here.

Not sure what I'm talking about? Check out my post on What Is CFS? :) If you or someone you love is facing cancer (with, or without CFS), here are some cancer support links that may offer a measure of comfort.

My next book

2010-06-14T13:37:00.000-07:00

I've been quietly working on my next book on the life of Paul for quite some time now. I wish I were further into the project than I am, but if you want to read some recent updates, I've posted a couple at www.GivenMeaThorn.blogspot.com and I would love to have you follow me there for ongoing writing updates. :)

lost tooth

2010-06-09T21:46:00.000-07:00

She's been waiting for over 3 years. Tonight, it finally happened...

Autism connection with Chronic Fatigue Syndrome?

2010-06-09T09:12:00.000-07:00

Did you know that Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features? I'm meeting more and more parents with neuro-immune conditions who have children with various autism-related struggles. This paper from the Autism One conference in May is fascinating!

Tidbits

2010-06-04T18:35:00.000-07:00

Too tired to make a full post, so here are Facebook updates I've made over the past couple of days:

Wednesday at 7:41pm

We are half way through Little J.'s 24-hour EEG. Since bedtime's in 20 minutes, if he goes down easily and sleeps well (don't know how easy that will be with 20 wires glued to his head) then we will just get up in the morning and head to the neurologist's office and it will all be over. Don't want him to have another seizure, but if he's going to, tonight would be a really good night for it to happen!

Thursday 10:31am

Grabbed a treat from Doughboys on the way home from EEG this morning. Don't know when we will hear results, but he got through the night without pulling out any leads! I was up basically once an hour through the night because he kept rolling around and tangling up his wires, but he sure looks adorable this morning with curly (he isn't usually curly) "bedhead" until we can get the rest of the glue washed out. :)

Thursday 9:05pm

Think we are going to be combing glue out of Little J.'s hair for weeks. Glad his 24-hour EEG is over. Now we wait for results. I gave another 9 vials of bood (4 pokes) tonight & am hopeful that we don't have to do anything else medically for anyone few a days now! Ready to sleep for about a week...

This morning

"...do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Cor 4:16-18

Noon today

Little J.'s 24-hour EEG results are all clear! Nothing else we need to do right now besides watch and wait to see if anything else happens from here. Thank you for your prayers!

1:30pm

Think the last bit of fight I had in me to keep me going through our son's testing has fizzled. Managed to be out of bed for about 20 minutes this morning and 15 minutes this afternoon. Tummy's been hurting since last night (gal bladder again?) and so exhausted I'm shaking. About to take some meds, have our oldest stick on some educational DVDs, pile the kids in bed w/ me and curl up in a ball.

ME Promo 2 from Double D Productions on Vimeo.

This afternoon

Very frustrated that my absentee ballot never showed up. I'm supposed to be registered for permanent absentee due to disability, but somehow I'm not on that list anymore. Was too sick to do early voting this week even when i was offered a ride, so now my only option is to brave the polls on Tuesday. I WILL vote and am thankful for the privilege to do so, but it's going to exact a huge toll on my body to get there.

This evening

Thankful for my sweet hubby who, once again, brought home dinner when I've been too sick to be out of bed today. Don't know how people survive chronic illness without God and supportive loved ones? I am overwhelemed by my many blessings and God's indescribable grace toward me! Praying for many friends who don't have this kind of support.

Moments ago

Always find dizziness while already lying down to be a very strange sensation...

June?

2010-06-01T08:27:00.000-07:00

Life moves too fast sometimes! My 5th grader and I still have a good 12 weeks of Rome to the Reformation curriculum to finish this summer, along with 30 or so days of 1st with our daughter. We used to intentionally do a year-round schooling schedule but have tried for a more traditional summer off the past couple of years. I would honestly love to be "done" for the summer right now, but I'm praying for renewed energy, joy and focus for us all as we jump back in today after so many schedule interruptions. If you could take a moment to join us in prayer for this, I would so appreciate your encouragement and support!

We survived the sleep deprivation required for Little J.'s EEG last week. The testing and extensive appointment with his new neurologist went very well. He has not had any more seizure activity that we have witnessed, though his neurologist thinks the chronic tummy pain he complains of may be related to seizure activity, so we are watching that more carefully and doing further investigation. Tomorrow morning he will be hooked up to more EEG leads and sent home for with a backpack to do a 24-hour EEG read. If that one comes up all clear, we will just "wait and see" from there. If any concerns show up on the 24-hour test (the 1-hour was all clear) our next step will be MRI (requiring sedation) and possibly medication.

Sunday we purchased an audio/video monitor for J.'s bed and finally got him moved back to his own room after having him sleep with us every night since the ER trip. I honestly don't know that I'm sleeping much more soundly with him in his own bed because we are constantly waking to check the monitor, listen and watch. But it is at least a little easier on my body to have him out of our bed and maybe my new collection of bruises from his toes can start to heal up now. ;)

What a blessing to have Rick home for the 3-day weekend yesterday. We have just under 3 weeks left until my parents leave for their mission trip and time is feeling very short right now. (I depend on them heavily for help with the kids when my health tanks. They will be gone from June 21- until late September or mid October.) Rick grilled a couple of lovely racks of ribs and my parents brought over a huge watermelon for a backyard BBQ last night as we reflected with thankful hearts for the blessings of our freedom and the sacrifices made for us to enjoy evening such as this. To any with loved ones in the military, please drop by and check out the ministry my parents have served with for the past 38 years, Cadence International (formerly Overseas Christian Servicemen's Centers or O.C.S.C.)

I'm still trying to recover from our trip to Stanford. I have been logging symptoms and stats like temperatures daily for nearly 2 weeks now and while I know my doctor needs to have the medical record, it's rather a depressing process. I cried myself to sleep Saturday night, just frustrated at all I can't do, all I'm missing out on in daily family life, all I want to be giving my children and husband and friends but illness steals away. Sometimes I need that release of tears, but today is a fresh day, pity party is over, and I'm praying for wisdom, direction, clear priorities, peace, joy and contentment in the life God has called me to.

Road We Didn't Expect to Travel

2010-05-24T10:50:00.000-07:00

We went to Stanford again last week. It was an "interesting" trip in more ways that I had ever anticipated. While we were there for my medical care, it was our 4-year-old son who caused the most excitement when he had a seizure, seemed to stop breathing and prompted a 911 call and ambulance ride from our hotel. Seeing my son blue and unresponsive is an image that haunts my dreams by night. Since returning home, we have already seen his pediatrician and are currently awaiting an appointment with a neurologist. This is the fist seizure we have witnessed, but think we only "caught" it because he was sharing a bed with his siblings and they noticed his distress and called us for help. Based on the after-effects of this experience, in hindsight we believe he may have had prior seizures at night over the past few months that we didn't witness.

I gave 10 vials of blood for the Stanford Medical Center CFS research program and another 7 tubes to my own doctor. (I'll give another 8 or so to WPI when they come by for a blood draw tonight.) The primary positive outcome of my months of IVIG infusions seems to be the dramatic reduction of my fevers. I realized just how out of the ordinary I've been when Dr. M. did a double take and turned around with the word, "Seriously?" when he realized I've spent years on end running 100-101 degree temperatures on at least a weekly basis (often several times per week). To have this trend broken (now it's maybe once or twice a month) is significant in his mind. On the negative side he explained that I could remain reactive (hives, breathing issues, etc.) to the IG for up to 7 months, but that these reactions should gradually resolve month over month.

I have started a new therapy on am planning to take the antiviral drug Acyclovir for the next year. At this point I have not yet found a doctor or researcher ready to start me on an antiRETOviral drug, but the Acyclovir seems to be a step in the right direction. I've been cautioned that I must self-regulate and "keep my world small" this year even if I start feeling noticeably better, to avoid relapse.

Honestly I'm quite exhausted right now. I've been in bed solidly since Friday, both sleeping extended hours and weak, weary and in much pain even when I'm awake. The emotional drain of our son's emergency, compounded with the physical strain travel always inflicts on my body, and I'm afraid it's going to take me a while to get my feet back under me. I've mentally written this blog post several times, but just haven't had the energy to actually type it. Even before our trip it was taking me 20 minutes to compose a 3-sentence email, so as you can imagine, typing anything coherent is even more challenging now (and I'm giving my spell checking a real workout!). Hopefully the Acyclovir will help offset some of the impact of this "crash" and I'm so thankful for my sweet husband, the help of extended family and the support of wonderful friends in the meantime.

What is CFS?

2010-05-12T08:23:00.000-07:00

May 12th is Florence Nightingale's Birthday, a day that has been claimed by Chronic Fatigue Syndrome (CFS) patients (along with Fibromyalgia and others) to increase awareness for this disorder. I had wanted to write an informative blog post, but honestly I just don't have the energy right now. So instead I'll clip and paste some information I posted to Facebook this morning, along with the answers I've replied to the questions people have asked me since that post.

Before taking on CFS, I wanted to flag a post I just made on my book blog, pointing you to some beautiful give-aways for moms of HeavenBorn (miscarried, stillborn, infant death, etc.) children. Most entry deadlines expire today or tomorrow, so please be sure to visit and pass the link on to a grieving mom you might know:
I've posted several give-aways for moms of HeavenBorn babies at http://hannahshopebook.blogspot.com/2010/05/heaven-born.html

And now, to my story (in limited characters for Facebook posting purposes)...

Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...

Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:

Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at http://www.xandxmrv.com/.

Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Instead of "opening the can of worms" of acknowledging this potentially massive public health threat, most would rather sweep it under the carpet (as they have been doing for a good 25 years), classify it is a mental/psychiatric disorder (rather than physical illness), or just ignore it all together.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. Updated information has been posted July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.

Post Mother's Day Blues

2010-05-10T09:29:00.000-07:00

This time 16 years ago I was suicidal. My life is so very different now. I have so very much to be thankful for. I am blessed beyond words! My kids and hubby spoiled me like crazy yesterday and we in turn were thankful for another year to spend with our own loving moms. So why on earth am I fighting those nasty old post-mother's-day-blues that became so ingrained into my life during our infertility years?

I still miss my babies. I love the three I've been given here on earth fiercely, and I would grieve any of of them with great anguish would the Lord decided He was calling any one of them Home before me. But none replace the others that I still miss and I don't think there's anything wrong about admitting to that reality that days like Mother's Day are strong reminders of who isn't here.

I ache for many friends
- the after-infertility babies of my sweet friend Shelly who just spent their first Mother's Day without their Mommy after breast cancer took her Home early.
- the after-infertility mom who probably just spent her last Mother's Day with her two miracles as brain cancer continues to steal away more and more of her life
- my friend who still battles through PPD as she faces the 2-year-anniversary of her daughter's death (on Mother's Day)!
- sweet Lori and so many like her who face their first Mother's Day visiting their children at his or her grave
- my single friends who long for families of their own
- the lady who refused a plant from me at church yesterday (and so many like her, like i used to be) with that defiant "I'm not a mom" response that I remember all-too-well

*sigh*
I am blessed. I am thankful. My heart aches with "survivor guilt" and today I need to take the time to grieve afresh before I can move on with renewed joy.

Not Alone

2010-05-08T16:45:00.000-07:00

If you are facing infertility or the death of your baby this Mother's Day, I've posted several resources this week at HannahsHopeBook.blogspot.com that I pray will encourage you. {hug}

And on a different note, while did not write any of the following,I love that I'm not alone in this journey:
Why I decided to Homeschool My Kids Despite My Chronic Illness

This N That

2010-05-06T22:58:00.000-07:00

As National Day of Prayer draws to an end, I've just shared my thoughts on Mother's Day and resources for infertility/loss related to this holiday on Harvesting Hope from Heartache™.

The Women's Health Hero voting has been extended from May 7 to May 14, so please feel free to continue sharing my profile link! We are up to 200 votes and currently in second place. On a very liberal website, I don't see these votes so much as being personal votes for me, but votes speaking affirmation of the gift of life when my profile is paired against several abortion-advocacy and other feminist nominees. (There are also some very cool and worthy profiles listed there, and I've actually added my own vote to several other profiles, but most of the lead vote counts are currently going toward abortion-related women.)

Here's a writing challenge I hope to enter, if I have the physical energy and mental focus in do the writing in the next few days: Hope to Cope with Pain

One day left to take advantage of a 10% discount on Affordable Mineral Makeup™ over on my InnerBeautyGirlz page. :)

And related to CFS/XMRV, here's a rather technical, but interesting and important letter from Judy A. Mikovits, PhD, Director of Research, Whittemore Peterson Institute, Reno, Nevada (whom I consider a personal champion in my battle for health) to the editors of the Bulletin of the International Council for CFS/ME.

Vote for me as a Health Hero?

2010-05-03T08:40:00.001-07:00

I was blessed to be nominated as a Woman's Health Hero and I need your help! (Head's up to my friends who are sensitive to mentions of pregnancy, the sponsors of this award do promote pregnancy-related books on their website, so please be for-warned before following this link.) Out of all entries, just 20 names will be inducted into a Health Hall of Fame. Two Hall-of-Fame selections will receive special honors as either Staff Pick or Audience Choice award determined by the public (that's you!).

You will be allowed to vote on all entries between now and May 14 (extended one week from the prior May 7 deadline), 2010. The entry that receives the highest overall ranking will win the Audience Choice award. Last year's Audience Choice winner was my dear friend Lisa Copen from Rest Ministries. I would be delighted to add a similar honor to my "resume" as I continue working on writing my book on the life of Paul as encouragement for living with chronic pain/illness.

Will you please help me by heading to www.ourbodiesourblog.org/blog/2010/05/comforting-those-with-fertility-challenges-jenni-saake and selecting the "thumbs up" voting button at the bottom of my profile? Thank you so much! :)

Links to Read

2010-05-02T15:45:00.000-07:00

I note this as "my most personal blog" in my blog list, and today I'm using it in a very personal way, as a journal or notepad to jot down some links I want to go back and read but just don't have the energy to fully comprehend right now. You are welcome to read along with me and/or comment about anything I link too. I can't promise you that I fully agree with or endorse anything in the following links because I haven't screened them - remember, that's why I'm posting them here for myself to read later. ;)

National Institute of Health CFS research statistics - I have read this one and am blown away by it. Just want the link handy because I never will remember it otherwise. Most eye-opening quote (beside the amazing lack of funding) is, "...patients with [CFS] experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis..."

Another CFS Blood Donation Ban Australia follows Canada and other countries in blocking CFS patients from blood donation due to XMRV retrovial potential for infection in blood recipients.

For Disable Parents

The Devastation of a Disease

And from the facebook page of Whittemore Peterson Institute today:

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

Today at 1:39pm
David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

Thank you.

David S. Bell MD, FAAP

1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

Quiet Sunday in Bed

2010-05-02T12:07:00.001-07:00

I did too much this week. There's not one part of it I would have wanted to miss, but I sometimes resist living within the limits of my body and end up paying the price for overextending.

Both of the younger kids were away from home with friends or family for much of the week, so Joshua and I snuggled down in bed and plowed through nearly three weeks worth of school work that had fallen behind during my IVs this year. It felt so wonderful to be so productive and we both are thrilled with the accomplishment!

On Wednesday morning two wonderful friends from church came and cleaned my house while I chatted from the recliner. I felt guilty and lazy, but also quite blessed. (In reality I was running a fever the whole time they were here and would have been in bed otherwise, but how could I not "feel lazy" when others are cleaning my house for me?)

That night Rick drove the boys and I (our daughter was visiting grandparents for several days) a few blocks from home to enjoy ice cream together as a family. Just an easy, simply, normal family thing.

On Thursday morning I woke up tired but was functional enough to drive my kids the 10 minutes to homeschool co-op. I used my wheelchair there then drove them home again. Dinner had been slow-roasting in the over for hours, so I came home and collapsed into bed. Got up long enough to eat with the family, then back to bed and didn't get up again until after 1 on Friday afternoon!

Friday evening Rick took the kids to a movie and I hosted Bunco for some friends from church. I sat every chance I could and let others share the workload, so really my main energy expense was rolling dice and simply processing conversations. We had a blast! This is the kind of thing our home is made for, the social interaction that makes me feel alive and joyful and fulfilled. It's been a good solid few years since we have had anyone other than family in our home (other than a couple of kids birthday parties more than a year ago) and I was thrilled to see this huge house filled with fun and laughter. But by the end of the evening I could hardly put together a coherent sentence and my mental fatigue was evident.

Yesterday morning I joked with my husband about my inability to process thoughts into words. I laughed, he frowned. He reminded me of my doctor's cautions that when I'm like this it's literally because my brain is "fried" and short-circuiting and I've pushed myself much too far beyond wise thresholds. :( He's right of course, but I didn't like hearing it.

We agreed that I probably could have done either co-op or hosted Bunco, but trying to do both in the same week was too much for my body. In the future I will have to be careful to schedule special things like this for weeks when I have nothing else happening, so that basically means summers will probably be the only time I can plan such hospitality even with the help and support of such great friends as co-op runs Sept. - Nov. and again Feb. - May.

I spent much of yesterday in bed but my body was fidgety and I couldn't sleep. By evening I was experiencing my "ice-pick" stabbing, roving, random pains, a bit of muscle twitching, and hives. I had a hard time getting to sleep last night, but after benadryl for the hives around 11PM, slept amazingly well other than strange dreams all night.

This morning Rick loaded the kids in the car for church and I've been in bed ever since and see how very wise Rick was to be firm in his request that I stay home. I am so blessed by such a loving husband. Yes, I probably could have pushed myself to sit through an entire sermon if I went in my wheelchair, but it certainly wouldn't have been a wise move. Even in bed my body feels almost too heavy to endure the effort of laying still, deep aches run the course of my back and limbs and a different kind of pain fills my head.

I haven't been able to actually sleep much this morning, but our bird is keeping me great company, I've done a tiny bit of writing for my Paul book, and I've gotten a couple of blog posts auto-set for future posting on my Hannah's Hope book blog (that is finally active again after a year of posting technical difficulties - please find it at its new home at HannahsHopeBook.blogspot.com ).

I would like to try to take a shower before they bring home our lunch, but I'll see how I feel when I climb out of bed before I commit to that energy expense. Our neighbors are having a birthday party tomorrow night and I was going to get the family all settle there before running over to writer's group. Guessing writer's group is totally out of the question now and I'll have to hold hopes of attending the birthday party very lightly, realizing that the rest of the family may well have to go without me. :( I didn't make it to writer's group last month either and probably won't next month (because it will be less than 2 weeks after my next Stanford trip and I probably won't be functional enough). It could well be that my next chance to leave the house doesn't come around until homeschool co-op again this Thursday!

Updated 2 hours later to say I never managed that shower. At lunch my 7-year-old informed me that my hair looks "snarly and wet" (greasy). Yuck! Maybe I'll shower tomorrow...

Mental Health

2010-04-30T15:39:00.000-07:00

This week I've been chatting about my journey through depression over on my Havesting Hope from Heartache™ blog. If you have lived with (or know someone who has) chronic pain/illness, infertility, pregnancy loss or postpartum depression (PPD), I think you will appreciate what I have to share. Please join me at HarvestingHope.blogspot.com/2010/04/its-depressing.html

Driving Me Up the Wall

2010-04-22T12:01:00.000-07:00

I've tried to describe to those closest too me what it is like to try to drive, how draining it is even to go a short distance and how fatiguing the sensory overload can be. I came across this article today that explains it all pretty well.

I didn’t drive for the better part of the first 4 years I was sick. Almost 20-years in I have made a total of 1 drive 45 minutes from home, 2 drives 90 minutes from home (and these both several years ago at my most healthy season), but typically have to keep everything within a half hour radius of the house (on my best days) or someone else has to drive. I too have learned when I just simply have to hand over the keys and cannot safely navigate a vehicle even for a 5-minute drive. It is a constant fear that I will spend too much of my mental/physical reserves getting myself somewhere or use up more than planned while I’m there, then not have the energy to get myself safely back home again.

I also have trouble plotting out how to get from point A to point B even if I know the area well. I’ve gotten lost many times and often have to backtrack or end up taking the most lengthy/complicated route somewhere because I have to keep re-adjusting for turns I forgot to make or exits I passed by, etc. My husband bought me an in-car-navigator for Christmas a couple of years ago and it has been very helpful, but sometimes I even have a hard time following those directions.

True of False?

2010-04-21T11:53:00.000-07:00

I always so appreciate it when someone takes the time to write a positive review for Hannah's Hope and share about the book on her blog. Over the years I've been so blessed by some amazing word-of-mouth promotion. But I've also "learned" some funny (to me anyway) things I never knew about myself.

Please drop by my Facebook "fan" page and see how much you really know about me. Can you seperate fact from fiction? Give it a try at http://www.facebook.com/pages/Jennifer-Saake/98673046436

Here are a few teasers to get you started:

True of False: I grew up in Japan

True of False: I have a degree in Christian counseling

True of False: I have been through in vitro fertilization (IVF)

True of False: We have two living children after our infertility journey

True of False: I am dyslexic

True of False: I am a pastor's wife

Do you know as much about me as you thought you did?

XMRV Global Studies

2010-04-13T10:44:00.000-07:00

On the heals of the April 6th news that Canadian Blood Services announced it would prefer to "err on the side caution" and ban "CFS" patients from donating blood, the following letter was posted yesterday at http://www.wpinstitute.org/news/news_current.html in response to the UK "replication studies" that failed to find XMRV in the CFS patients tested. Eye-opening information here!!!

Dear Dr. McClure:
On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing you today to ensure that there is direct communication between WPI and your research team. You may share this letter with others that you deem appropriate, and I will do the same by sharing this letter with other interested parties in both the United States and the United Kingdom.

On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication you reported the following conclusion, “[b]ased on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS, at least in the U.K.” You subsequently made the following statement in your commentary regarding the Netherlands study in the BMJ, “….van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline Village on the northern border of Lake Tahoe in the mid-1980s.”

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

One might begin to suspect that the discrepancy between our findings of XMRV in our patient population and patients outside of the United States, from several separate laboratories, are in part due to technical aspects of the testing procedures. To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples.

This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies. It is in this systematic manner that we all may help to move the science forward; instead of continuing to debate whether or not ME/CFS patients in Europe are infected with XMRV.

It is also important to note that our initial study was not intended to prove causality of ME/CFS, but to report a significant association between patients who had been diagnosed with ME/CFS and XMRV. We believe that there exists compelling evidence to spur additional scientific review, especially in light of the fact that our team of researchers also discovered XMRV in the blood of 3.7% of our non contact controls.

I look forward to your timely reply.
Annette Whittemore
Founder and CEO
Whittemore Peterson Institute

As a note of personal clarification, as I am one of the original XMRV-positive patients reported in the Oct. Science paper, I've had many questions about when/where I became ill. I am US born, but spent about 9 years of my childhood overseas. The more I learn about retroviruses and think back through my own medical history, the more I suspect I've probably had X at least since I was 8, living in Japan, though some strange medical symptoms can be traced back even earlier and could stem to infancy in Michigan or even my 1972 birth in Oregon (though I lived there just three weeks).

Since I didn't "crash" hard with what was eventually diagnosed as CFS until I was 18 and living in southern CA in 1990, I "acquired CFS" here in the US. There is obviously no way to prove how long I've carried XMRV or even in what country I became exposed, but I would be considered to be "from southern CA" when it comes to CFS onset, though I've lived across the US and in various parts of Asia. Since I never lived anywhere longer than two years, sometimes moving much more frequently, my continent of contamination is utterly unknown.

I have now lived in Reno, about 45 minutes for Incline Village, for the past 12 years. I had never even been in the state of NV (other than driving through southern Vegas and spending about 8 hours overnight in a motel on the way to somewhere else while in high school) until after my CFS diagnosis, so I am certainly not part of the Incline Village outbreak.

Friday :)

2010-04-09T09:08:00.000-07:00

I think I'm going to put my "Fiction Fridays" feature on hold for a few weeks as I read back through your previous review comments and decide where I'm headed from here. :) Thanks for all the great feedback. It was exciting to see how popular those review posts seemed to be.

My body's telling me it's got to be a quiet day at home today. My kids all seem to be trying to fight off a little something too, so I think we are going to do a lot of reading and have a fairly light school day. Looking forward to a weekend with my sweet hubby home before he heads to ChirpTweet next week.

Since this blog is focused on both motherhood and infertility, I had to share another sweet blog I stumbled across this week. Me vs. You is written by two sisters, one dealing with infertility (now finally a mom to one) and the other highly fertile (5 kids in 7 years). It is a reflection of their journey through sisterhood together as they each saw their families unfold in such different ways, wanting to continue being deeply devoted sisters, yet the pain of circumstances often getting in the way. They take a unique approach with their blog, inviting questions from their readers, then each sister answering from her own perspective. I obviously haven't read every post in the extensive history there, but was really impressed with the loving and candid advice I did have a chance to read. (And it didn't hurt my feelings at all when the infertile sister suggested Hannah's Hope as a resource for her readers this week, thus triggering my Google alert and allowing me to find their blog in the first place. ;) )

I bought myself a little treat last week and am enthralled by the beautiful pictures, along with a surprising amount of information, packed into In the Footsteps of Paul by the photographer behind the movie, "The Passion," Ken Duncan. A feast for my eyes and refreshment for my soul. :) What a joy to see my own book on Paul continue to take life over this past week as well.

In other news, our taxes are finally filed!!! Yeah! (I knew you couldn't survive another minute without knowing that vital piece of information. But it was a BIG DEAL to me, and has been a huge focus in our household these past several weeks, thus noteworthy for this blog. ;) ) It was nice to finally see all those medical expenses from 2009 do us some good in the form of tax deductions.

World Health Day

2010-04-07T17:17:00.000-07:00

Honestly don't know anything about what this day is about, but the owner of Affordable Mineral Makeup is marking it by offering a 12% discount off your entire Affordable Mineral Makeup order today and tomorrow (through 11:59 Thursday evening) at www.InnerBeautyGirls.com with coupon code:
worldhealthday

Don't want to miss future discount codes? Please follow me at the InnerBeautyGirlz blog! (I don't often mention my makeup business here as I have a whole blog just for beauty tips, tricks and sales.)

Brown Rice Diet?

2010-04-06T21:47:00.000-07:00

With yet another yeast infection raging (yes, I was weak and indulged in a few pieces of Easter candy over the weekend, and woke up "paying for it" by Monday), I've been investigating food choices that I might actually have the energy to implement. Many people have encouraged me to try Candida diets, gluten-free diets and many, many other diets. While I fully believe there's probably great merit to many of these suggestions, the bottom line is that if that's what it's going to take to "get better" (and with a retro-virus, I honestly believe there's a lot that can be done to make healthy choices, but currently nothing that's going to make a dramatic difference) that I simply don't have the energy to do what is needed to get more energy.

As a chronically ill mom I'm thankful to get something relatively nutritious to the table for my kids three times each day, so yes, I do rely on prepackaged, canned, frozen, and otherwise processed food much more than I would like. But am thankful to have these options that make feeding my family possible at all. Taking on "special projects" like restrictive diets simply isn't a realistic option for me unless someone wants to volunteer as my personal chef.

I have tried various forms of "detoxing" in the past and typically have terribly problems like nightmare migraines (pain indicating symptoms of brain aneurysm), hives, nausea and sometimes even breathing issues. But every "detox" I've tried in the past included herbal supplements and since I am sensitive to so many chemicals, even natural ones, I've long suspected dextoing herbs to be allergens for me.

Today I came across the Brown Rice Diet on one of my follower's pages (thanks Amy!) and am wondering if this is one I might actually be able to handle? No herbs involved, healthy, natural foods that are easily within the parameters of things I enjoy eating and can prepare with relative ease, and probably all things I can prepare for my family without having to make a full second set of meals for myself. Giving up prepared foods will still be a stretch for me energy-wise, and no bread or dairy will limit some meal options (we don't do milk, but do cheese and yogurt, along with a fair number of sandwiches), but I think this one could be workable.

Anyone ever try this or something similar? Would love to hear your stories and input.

After-Infertility Easter :)

2010-04-03T22:25:00.000-07:00

It's been a long day, a long week. Taxes are finally all but filed (we have one more piece of information to track down before hitting "submit") and physically I wasn't sure I was going to be able to push myself through the day. With throbbing hands and arms after a half hour of putting R.'s hair up in curlers, the kids' bedtime rolled around at 8 and I wanted nothing more than to crawl in bed myself, but we hadn't begun preparing Easter baskets yet, so I knew that wasn't an option.

Filling eggs, hiding eggs, setting up baskets, it was tempting to see the task before us as overwhelming to this pair of parents fighting aches, pains and exhaustion, but the next two hours turned out to be such a joy. I remember too many years of longing for the chance to be given the option of trading sleep for preparing late night surprises. I ache for my friends still in the journey as I reflect on so many Easter mornings I met with tears as adorable children arrived at church in Easter finery. I remember too many years when I couldn't wonder in Resurrection because the sting of the grave was still much too personal and too close. (If this is where you live right now, please know you are in my prayers, many of your specifically by name tonight!)

It's times like this when I'm most thankful for infertility, that the journey to parenthood gives me perspective on the privilege we've been given. Once baskets were filled and eggs were hidden, my heart was overflowing and while still physically exhausted, I just longed to make it a memorable morning for my family, so I pulled frozen cinnamon roll dough out of the freezer and got a beautiful springtime breakfast table all set, complete with flowers that I know will make our daughter's heart sing.

And tomorrow will be a very special day for our family in more ways than I had ever imagined. Not only will we together be celebrating Christ's victory over the grave, but R will be joining us in communion for the very first time and Little J. will be attending church for the first time as a new Believer! Yes, on Wednesday, March 31, our sweet 4-year-old became no longer just our physical son, but now our spiritual brother as well, asking Jesus to forgive his sins!!!

Oh grave where is your victory? Oh death, where is your sting? Praising God for turning our mourning into gladness and giving us the gifts of our miracles babies, along with His only Son!

----
Editing this on Wednesday morning to add a link to Holley Gerth's You're Delightful post as it is such a beautiful tie-in, written from the perspective of one still jouneying primary infertility.

Fiction Fridays: Long Awaited Child

2010-04-02T14:20:00.000-07:00

I won't typically "review" a book that I haven't personally read cover-to-cover, but as I'm running low on my supply of fiction fertility-related titles to share with you, I'm going to take a leap of faith and borrow a review from a trusted source, the Stepping Stones Christian infertility ministry. I do intent to eventually pick up The Long Awaited Child by Tracie Peterson, but just haven't had the chance yet.

From the Stepping Stones bookstore review: "Novelist Tracie Peterson has written or co-written over 35 novels. This novel is the dual story of a woman, who wants nothing more than to be a mother, and a frightened pregnant teen, who wants nothing more than to run away from that responsibility. Be ready for some tears as you read how each of them overcomes past heartache to give the other her heart's desire."

While I haven't read The Long Awaited Child, I have read other books by Tracie including the Alaskan Quest series (not "infertility-friendly" but a fantastic read). Have you read any books by Tracie? If so, what were your thoughts?

As I draw to the bottom of my pile of infertility / loss fiction titles here, what would you like to see next? Would you prefer to see me move into other fiction topics, or would you like reviews of more fertility-related books from the non-fiction category? I want to provide a valuable resource here, so please let me know what you would like to read! I'm always looking for great Christian titles to share with my friends, so if you can suggest other titles, please leave me a comment about the book and why it would be of interest to InfertilityMom blog readers.

CFS for a few minutes, harder than running marathon!

2010-03-31T10:17:00.000-07:00

There's medical data to back up that claim too. Here's an interesting look at one researcher's theories about pain and fatigue processing. When you scroll half way through the article you will see two different sets of charts showing the difference between healthy people and those with Chronic Fatigue Syndrome, including the clinical results for pain and sympathetic nervous system reactors after 15 minutes of mild exercise by CFS patients and the same receptors in a healthy person after a 26-mile marathon.
Adrenergic and Sensory Receptor Expression on Leukocytes Increases After Moderate Exercise in Chronic Fatigue And Fibromyalgia.

The activity of a receptor called Type A that’s been implicated in pain doubled in ME/CFS patients who also had FM and showed no increase in healthy subjects at all. Sympathetic nervous system (adrenergic) receptors that detect SNS activity were increased 2-6 times.

How active are these receptors? These sensors, not surprisingly, get really active in marathon runners but they still never got as active in marathoners (after a 26-mile run ) as they did in ME/CFS/FM patients (after a mild 15-minute exercise period).

Wounding Words

2010-03-30T09:15:00.001-07:00

I've said some really ugly things to my husband these past few weeks. Things that reflect some very ugly places in my heart, places where confusion and pain and grief and anger are all swirling and crashing as we try to learn and work through what XMRV means to our family, to parenthood, to marriage, to our lives. Grief is hard work, and because we are in very different places with our grief right now, I become fearful and fretful and angry. Like a carbonated bottle, shaken under pressure, I spew out words that shower those closest to me with anything other than graceful blessing.

I think I'm grasping for control in a situation that seems like it's much too far beyond our ability to begin to cope with. You would think by now I would have learned enough about the character of God and His ability and willingness to carry us that I wouldn't be scrambling so hard to hold tight to reigns that are cutting and blister my hands. Instead of leaning into Him, I'm lashing out, thrashing about, grasping hold of anything and everything, and like a downing woman dragging my husband right down under the waves with me.

If I can't control this then I guess I'm trying to control everything else, letting little fears and thoughts and irritations grow in mind until they are blow extraordinarily into grotesque disproportion. The result is to lash out, usually at Rick, and let him take the full force of my emotional explosion's fallout. :(

In my heart I am so thankful for him, so amazed at his gentleness and love. With my words I tear him down and dishonor him. I become obsessive and fearful and in my hurt, I hurt him over and over. I've sent verbal blows to the most personal levels and my heart aches for the pain I see in his eyes, weight I know I have added to his shoulders. Lord, when I want nothing more than to build him up, to bring joy to his heart, why do I continue to verbally shred him?

God's brought us through so much over the years, the loss of a business, the deaths of our babies, infertility, multiple moves, the ongoing ups and downs of health issues. He is, has always been, will always be FAITHFUL. But His faithfulness doesn't mean the journey never hurts.

Father, please show us how to walk this road together in your love that is patient and kind, not rude nor self-seeking, not easily angered nor score-keeping; areas I'm utterly failing at right now. Speak Your truth to our hearts Lord and please give me a heart that protects, trusts, hopes and perseveres because YOU never fail us!

And to the amazing man who stubbornly sticks by my side even when I test the steadfastness of his love by trying to push him away, please know that your sacrificial acts of love are not overlooked. While sometimes I turn a blind eye toward them (though I see far more than I praise you for), God always sees. I know this skit is from a woman's viewpoint, but I want you to know that you are anything but "invisible" even when my wounding words make you feel that way!

Give-Away for my book

2010-03-29T09:45:00.000-07:00

I've been posting updates about my current writing progress for my new book on the life of Paul and living with chronic pain/illness over on my Harvesting Hope from Heartache™ blog. And today I also posted a give away for a copy of my book, Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss. To enter the give-away or catch up on my latest writing ventures, please visit HarvestingHope.blogspot.com. :)

Fiction Fridays: Karen Kingsbury

2010-03-26T14:11:00.000-07:00

Karen Kingsbury has too many fertility-related stories for me to even list. Visit her website (where you can read her own adoption story!) at KarenKingsbury.com

I'm currently enjoying the Red Gloves Collection. So far my favorite title there is Gideon's Gift. It's not an infertility story (well, one daughter is an only child and there is implication that the parents wanted more) but does involve adult loss and the grief journey. Incredibly touching!

What's your favorite Karen Kingsburry title (related to fertility challenges or otherwise)? Why? Please share!

Funny Fours

2010-03-23T07:56:00.000-07:00

My four year old is bringing so much joy to my heart today. I think God custom-drilled those dimples just where he knew they would have the most heart-melting impact. Add to that the funny things coming out of his mouth and I can't help but giggle as I squeeze him. Thank you, Lord, for my beautiful miracles.

This morning he came back to talk to me in bed just after Rick left for work. "Mommy there were two dogs that chased Daddy's car when he left for work. They were big! One was brown. One was white. They ran really fast.
"And they are still big and still white and still brown and still following Daddy's car! All that's the real, true story." All said with huge eyes and great seriousness mixed with enthusiastic emphasis. I guess we have past and present tenses down now. :D

Fiction Fridays: Leisha Kelly

2010-03-19T14:16:00.000-07:00

Last week I reviewed Julia's Last Hope by Janette Oke. A similar title with a totally different storyline, Julia's Hope by Leisha Kelly, is not a story about fertility challenges, but rather depicts one family's struggle through the great depression of the 1930s. If you are up to reading a beautiful story about the fierce love of motherhood, enjoy this sweet read.

Feeling Better

2010-03-19T10:12:00.000-07:00

I'm actually feeling semi-human again today! :) In celebration, don't miss out on Passover my give-away link over at Hope Harvesters™. My fever broken this morning and my sores are almost totally resolved. I also slept much better last night than I had for quite a while. The amazing thing about having had chicken pox so many times is that each case seems to be blessedly lighter and more quickly resolved than the time before, and adding the anti-viral medicine this time around too, seems to have really helped. I think given the choice between recurrent chicken pox and shingles, I would just as soon keep going this route.

Acyclovir has been hard on my tummy and I'm in quite a bit of pain because I can't take my normal pain pills while taking this. I got a migraine the day before the pox broke out and am still fighting a pretty nasty headache, though it's now different than my typical migraine, so possibly a side effect of the Acyclovir instead? Yesterday the headache was especially vicious. It's still here today, but not nearly as nasty as it has been. The good news is that the Acyclovir has been hard on the chicken pox virus too! My doctor says that as long as I have no oozing sores and no fever, I'm free to be out in public. I had figured church was out on Sunday, but it's actually looking like I might be fine to go.

Tonight our kids are spending the night with my parents. Rick will be at a men's church group meeting this evening and I'll hopefully feel up to starting to tackle paperwork for our tax filing (is the deadline really less than a month away already?!) while the house is quiet. Then Rick and I are taking the whole day tomorrow just to regroup and be alone together after an especially stressful few weeks.

Our last alone time was our latest trip to Stanford, and since the focus of that whole trip was medical, it wasn't terribly relaxing. This will be our first day alone together, without a medical focus, in a very long time and we are both relishing the fact that we get to have a date tomorrow even if we do nothing but stay in bed and watch movies together all day! :) We have a couple of gift certificates, so if my tummy's doing well enough, we might even go out for dinner.

Will be wonderful to have the whole family back together again tomorrow evening. Our youngest has been with his other grandparents since last Sunday and his original planned mid-week return was delayed because I was down so hard. I'm thankful he had such a better week playing on the farm than a very sick Mommy could have given him here at home, but I'm sure missing him and looking forward to having him home again.

Chicken Pox, Again!

2010-03-17T12:09:00.001-07:00

I woke up with Chicken Pox this morning. This is either my 6th or 7th time. I've honestly lost count now. The first time was a REALLY, REALLY bad case (down throat, under eyelids, etc.) as a kid. All the rest as an adult have been since my CFS onset and milder with few pox but still full-fledged on all the other fun stuff like fever and general yuckiness. The joys of a compromised immune system...

Fiction Fridays: Janette Oke

2010-03-12T14:06:00.000-08:00

Several books by Janette Oke include infertility and/or loss themes:

The Love Comes Softly series, while the main character is quite fertile, also includes a subplot of a friend with recurrent losses and eventually giving birth to her only living son with special needs. Later in the same series, there is stillbirth.

Canadian West series, especially by the second and later books, is very much an infertility story and also includes adoption loss and fulfilled adoption dreams.

A Bride for Donnigan has the main character being very unsympathetic with her friend's miscarriage grief until she herself suffers a stillborn baby.

Julia's Last Hope depicts an after-infertility mom of twins who opens her home as a bed-and-breakfast. Her first client is a pregnant teen who is sent away to give birth and relinquish her child for adoption to save the wealthy family from disgrace. Julia gives a great representation of the processing of after-infertility emotions and I could relate to many of her conversations with God.

Janette's books are typically light, quick reading. Some even consider them "fluff" but I "cut my teeth" on Christian fiction with these as a teenager and Janette's stories will always hold a very special place in my heart. I know she has other titles that are strong fertility-related plot lines, but these are the ones that come to mind off the top of my head. Do you have any to add to this list?