Thursday, December 23, 2010

If Christmas Happened Now...

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.

Monday, December 6, 2010

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.

Friday, December 3, 2010

Birthday Presents for Jesus

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???

Wednesday, December 1, 2010

Did the Baby Die?

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.

Tuesday, November 30, 2010

DaySping 30% discount code

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.

Save 30% with the biggest coupon of the year! Expires Nov. 30.

After Infertility "Normal"

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. :)

Monday, November 1, 2010

To Write

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!

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

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.

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 http://www.cfids-me.org/xmrv/ 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!

Thursday, September 23, 2010

And Then Life Changed...

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...

Monday, September 13, 2010

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. ;)

Sunday, September 12, 2010

Hearts Dancing with Hope

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.

Tuesday, August 31, 2010

New School Year

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...

Wednesday, August 25, 2010

XMRV has a family!

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."

Saturday, August 21, 2010

Grand Opening

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

Thursday, August 19, 2010

Lots of XMRV updates!

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

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...

Tuesday, August 17, 2010

Perfection Trap

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.

Monday, August 16, 2010

What's a Retrovirus?

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

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.

Sunday, August 15, 2010

18 years! :)

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!

Monday, August 9, 2010

Join Me?

I need five homeschooling friends to check out
Homeschool Buyers Co-op
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!

Saturday, August 7, 2010

4isims

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.

Saturday, July 31, 2010

Birthday Joy

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!!!

Friday, July 30, 2010

17-years ago CFS

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
















Monday, July 26, 2010

More on XMRV

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.

Wednesday, July 21, 2010

Can You Help?

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. :)