Talk with a Doc

I hate it when you work on a post, then it disappears. Oh well, I start again...

My topic for today's #NHBPM is, to tell about a conversation with my doctor.

Easy enough, but I have to sort through more than two decades and multiple situations to decide what story to share. Many come to mind!

I guess I'll tell you about a fairly recent (maybe three years ago) conversation with my primary care doctor.

I thanked her for caring, believing me, and working with me to fight my CFS. She was bewildered at why I would say that. I explained that I was used to be being unbelieved or disregarded. She glanced down at some recent test results (that like most, offered frustrating few answers) and exclaimed, "How could anyone work on your medical care team an not believe you were sick? It is so obvious!" This doctor doesn't have extra training nor some answer that I need, but I love that she that she admits her limitations and is open to pursing new ideas with me. These are sadly, very rare traits!

What have your experiences been with medical care givers?
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First Published Book: Hannah's Hope : Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss

Book-in-progress on drawing on the fruit of the Spirit in times of trial: Harvesting Hope from Heartache

Next book-in-progress: 6 strokes at age 39, Stroke of Grace

Why my Description is Changing Again

Some of you first came to this blog because of emerging XMRV information. While this specific virus theory is declared to be dead, I'm personally not sure the retrovirus story is over, honestly. As we await further chapters of the ME/CFS saga, to unfold, I will try to highlight any especially profound developments as they come to light. It is a long article, but for anyone really interested here is a farewell letter from a group called XMRV Global Action that is filled with further information and resources.

Before I forget again I had to share a few cute and sweet thing from our 9-year-old. I have used Sign Language as a secondary language for well over 20 years, teaching all our kids some Sign since birth. The other day my daughter (who doesn't even have a phone or ability to text yet), Signed "BRB" to me in Sign Language letters. My speech therapist happened to be here at the time and foud her Signing/texting combo to be creative and hysterical.

I've already forgotten the other cute comment I wanted to remember. :( If I think of it again, I'll try to edit it into this post!

Starting Fresh

I am entering a blogging contest with the theme, "Starting Fresh" and focusing on something I'm doing new or differently than before. I though of various things I could talk about, like how we will need to relearn family life when our kids come home, what it is like to be hearing a bit out of my left ear since surgery this week but how I'm struggling to try to figure where sounds actually come from, dropping and adding new medications over the past two weeks, or how I'm trying to learn to fend for myself in my exercise routine without formal physical therapy appointments now (thanks to insurance limitations rather than medical necessity).

Then I realized I don't need to focus on a single aspect of this journey because I am starting over each day, learning to live a "new normal" where just getting out of bed is another victory. All of life must be approached differently than it was 7 months ago. Emotionally, mentally, spiritually, and certainly physically, I am a different person now. I hope I am becoming a stronger, deeper person.

On a grand scale, we are starting fresh. After more than 19 years of marriage, my husband and I must relearn who our spouses are, how we each react and respond to daily life and a myriad of situations. We are coming up on our 20th anniversary, in a way, as newly weds.

It is strange to have a perspective of over 21 years of chronic illness only to plunge into acute injury and the process of recovery. This too is a kind of starting fresh. I am thankful for the "training ground" of the past decades and while it has been a journey I never would have willingly chosen, I can see how I am better able to cope with current losses because of what I had already been living through and learning.


I have been reliant on wheel chairs or walkers since October. I still mostly am, but something new I am trying more and more often is to leave these safety-nets behind and leave the house on my husband's arm or occasionally to even try a cane. What I can't get most people to understand is that I don't need a walker for much weight support but for mental feedback to counter massive balance issues from some specific areas of brain damage. Rick, sometimes my "human walker," knows this beyond a shadow of a doubt, as I stagger and push him into walls. Still, it feels so good to be walker-free when I take his arm. It has been a huge leap of faith to try, but it is a good challenge for me.


It is also a new (and very humbling) experience to be sharing almost all areas of my recovery publicly, as the experience unfolds, rather than retrospectively, as I have done with various issues in the past. My stroke blog, with about two dozen posts, is only a little more than a month old. I really appreciate all the support I receive both there and on the accompanying (even newer) Facebook page where more than 100 of you are kindly following this journey.

I am also thankful for my husband and his support and grace in this process. Hopefully, one day this will all lead to a new book so that others who find themselves thrust, involuntarily, into starting over, will be refreshed in finding they are not alone!

More Than Meets the Eye

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever"
(2 Corinthians 4:16-18 The Message).

This morning I was excited to wake up see I was only seeing one mirror on the dresser in my right field of vision. I was confused because images to the far right, overhead and especially to the left were still noticeably doubled. When I shifted my head just a tiny bit on the pillow the mirror was doubled as well. I finally realized that the bridge of my own nose had been blocking the view from my left eye at the angle I first woke up this morning. Overall I would say the double images are moving a little closer together, overlapping each other at times, though when I intentionally try to focus and draw the pictures closer together, they tend to drift farther apart. The neurologist still couldn't ger my left eye to move clear to the left, but another friend commented yesterday about how much better my eyes look.

12 Steps

Rick says there were several times my therapist let go for several steps today. I still walked like a drunk, but surprisingly better than last week. Rick took one video where my therapist let go of my belt for about a dozen steps! We hope to post to the video to Facebook (see previous post for links) later this week.

I'm still wearing 3-pound weights on both legs when I walk to help my brain understand my body's place in space. I am finally strong enough to wear 1 1/2-pound weights on my arms, on and off, here at home, for the same reason. My left hand continues to be rather non-functional

My left shoulder has acted up all week, so today in therapy, we skipped any machines or exercises that could irritate it or cause further inflammation and pain. I've had it explained to me that the shoulder isn't fully dislocating, but because of the muscle weakness, it does repeatedly slip partially out of its socket, thus causing pain to an otherwise mostly numb area of my body. It "popps" back into socket several times per day and that's painful when it happens, but ultimately brings some relief.

The only way to strengthen the shoulder is through specific exercises that I have to do several times per day, but most exercise aggravates and inflames the joint, bringing more pain and loss of mobility. It had calmed down for the few weeks I was out of therapy (between home health discharge and my first outpatient appointment), even though I was continuing with an exercise regiment here at home, but now that I'm doing home exercises on top of regular therapy, my shoulder is giving me plenty of trouble again.

If you are looking for a specific prayer focuses, we would appreciate real prayer for our marriage. We hope to celebrate 20 years of marriage this August, and though we've been through a lot of painful things (business loss, unemployment, infertility, recurrent miscarriages, several adoption losses, chronic illness, etc.) this outranks any experience we have yet faced. This has already been a long and painful trial and we know we have many more months or years of adjustments ahead of us before we can begin to find a "new normal."

Even if I do regain physical functions through God's re-wiring of my brain, there are six areas of my brain that are (barring God's miraculous invention) dead and cannot be recovered, so my cognitive process have been forever changed. That's hard for both of us to cope with. Although, Rick married me "for better or worse, in sickness and in health," this is a trial neither of us remotely imagined facing! God's power is our only hope or strength!

We would also appreciate your prayer for wisdom and unity in parenting. While we still haven't moved the kids back home full-time, this has been a painful growing season for every member of the family. We are finding parenthood to be more challenging than ever and know we desperately need God's guidance. Our kids are finding life to be full of surprising adjustments and challenges. This is one season where I'm especially thankful that Noel, Joel and Hannah never had to face any of the challenges of this broken world! Please keep J. (boy, age 12), R. (girl, age 9) and especially J-Bear (boy, age 6) in your ongoing prayers! I know God's purpose in this must include their lives in His holy plan, so I am learning to yield them in a way I never have before, but it is heartbreaking to watch them go through such deep struggles and be fully unable to fix anything or make the situation any easier.

Physically, besides longing for walking and seeing better (my new glasses will have to be exchanged, as they create a "blind spot" in my good eye), my TMJ remains my most ongoing and painful "thorn." My therapist works on my jaw about an hour per week and it the process is so painful I fear I will throw up on him (something my sweet husband has already endured) one of these days, from the intensity of the pain (and this said by a woman who has survived endometriosis and three unmediated labors). He says my jaw dislocation is very deep and we can't even begin to address the slipped disk in the jaw until he has re-adjusted me enough that the muscles relax enough to begin trying to move the disk back into place in the jaw joint. It is very strange to experience a numb left half of my mouth and feel such deep and profound pain in the left side of my face, my jaw joint, my lower jaw and my teeth!

Another couple thing that have really "gotten" to me this week are the finality of our sterility and my self-image. Before my strokes I had been praying about adopting another child. Even though it's been 3 1/2 years since my (medically necessary) hysterectomy, and though we've been abundantly blessed with living children, I still held out hope that "someday" (sooner rather than later) we would continue building our family through adoption. God had other plans. Instead of caring for a baby, I'm dependent on others to do my laundry, cook my meals and clean my house. The door feels firmly locked and bolted closed now. For the first time in a long time, seeing a sweet baby made me cry on Sunday and that familiar old ache was back in my heart. We've had three turns I thought we would never have, two after I had been told to expect a hysterectomy - I am so blessed! But it will never be again, and that finality is hard.

I keep another blog called Inner Beauty Girlz but I guess my message, that outer beauty is fleeting and that true beauty comes from Christ on the inside, is one I still need to learn! I started sobbing in church Sunday while everyone else sang, "You make everything glorious, and You made me!" I could only think of my brokenness, my chopped hair, my crazy eyes, my weight gain and my losses and inabilities. At that moment I could not think of Christ or who I am in Him, but only of my ugliness. I have voiced to several people that if only I were a baby or even a toddler I would be "cute" in my re-learning how to walk and move my body, but so far no one seems to really understand my self-loathing. Obviously, I am still really struggling with this.

My book on the fruit of the Spirit, is also coming along, like my physical healing, very slowly, but it is continuing to move forward. I'm asking the Holy Spirit to give me wisdom about what He would have me say about Himself and His work in our lives. Please join me in praying about this.

That's all I can think of to update for now, but it gives you a picture of where I'm at both emotionally and physically. Thank you, again, for your faithfulness in ongoing prayers! God is faithful and gracious and so good!!!

of Dinner and Crashes and Hospitals and Wheelchairs

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?

Could You Please Lend a Hand?

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! :)

Fibromyalgia

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.

Make a Differnce!

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

ME/CFS is Real

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."

Homeschooling with Chronic Illness

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.

Edited in 2013 to add one more tip: 

Know when to say when. If health issues dictate a change, don't be so married to your desire to homeschool, that you can't let go of the dream if it ever comes to that. When people would question our dedication to home schooling or plans for duration (I was homeschooled through high school, so that seemed a viable plan for us as well), my answer was, "We will keep homeschooling as long as it remains the best option for our family." Little did I dream there might actually come a day when it was no longer our best option. With mixed emotions (but amazingly more God-granted peace than I would have ever thought possible), here's why this part of our lives has taken such a dramatic, and yes health-related, change.

 (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 Through Chronic Pain (part 1) - Gricefully Homeschooling

Homeschooling With A Chronic Illness (update) - Gricefully Homeschooling

Homeschooling with a Chronic Illness: 10 Tips to Help You Succeed - Ben and Me: the delight-directed homeschool

Homeschooling With Chronic Illness (podcast) - Savvy Homeschool Mom 

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

Tipping the Scales

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

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

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.

---------------------------------

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

CFS Blood Donation Ban and More

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.

Updates

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

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!

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

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!

I Hope You Dance videos

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. ;)