Thursday, October 21, 2010

more 4-isims

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.

Monday, October 18, 2010

Friday, October 15, 2010


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.

Sunday, October 10, 2010

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 if you have questions about any of this!

Friday, October 8, 2010

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.

Monday, October 4, 2010

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!