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 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 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.