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| In response to being censored by the GBS / CIDP forum I set up a myspace account. There I can post without censure. the url it
http://www.myspace.com/guillainbarre
I'm also leaving this space. If you wander in, you can see me over there if you like.
I've met some wonderful people here. I wish you all the best!
Kelly
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| Unbelievable. I have to write this.
When I began seeing my Homeopathic doc, he cautioned me not to join any
support groups or read forums because they were full of doom n gloom,
and could be really depressing. So I didn't. At least not until I
felt "well".
Eventually I felt like I was over the hump and nothing was going to
depress me or anything, and I might have something to say, so I started
reading this forum and I liked it. It even had a list called "success
stories". I read many and I decided that I too had a success story. So
I posted.
The very next day I logged on and discovered that I was banned from the
forum, and that the ban would be lifted "never". I checked annonymously
and every post I made was still there, with the exception of the
"success story". Below.
Last winter, in January of 06, my physical activity consisted of about
150 miles per week cycling - I rode my bike to work five days a week -
and 40+ miles of running per week. We were having one of those mild
North Texas winters, it hardly ever got cold enough to freeze. My
marathon was six weeks away and I started making excuses, because I
felt unusually cold natured. My fingers and toes felt numb, sometimes
tingling like the circulation had been cut off, water from the tap felt
painfully cold, as did every surface around me. I began to feel
unusually tired after even a short run and within two weeks, I couldn't
run at all. I began tripping, veering off course and walking into things. I walked like a drunkard!
My primary physician had no idea what was wrong. My blood tests came
back fine and except for the fact that my reflexes were below normal, I
appeared to be in perfect physical condition. I suspected a pinched
nerve so I went to a Chiropractor instead. He insisted that my problem
was caused by Vertibral Subluxation - a degeneration of the vertebrae
that results in a pinched nerve.
Unfortunately, my condition worsened over the course of his treatment,
instead of getting better. Finally he suggested that I see a
Neurologist, and so I did.
I have been a participant in MS150 bike rides for many years, so I had
a good idea of what Multiple Sclerosis was, and I was worried that
perhaps that was what was wrong with me. Waiting for 10:00 to come
around so I could go get my MRI, I registered for an MS150 bike ride. I
guess that I thought that could influence the outcome.
The
MRI ruled out MS. I had no lesions. The Neuro scheduled me for an
EMG test the following week. The Neurologist did not commit to anything
after that test, I asked him about GBS and he said only that he would
need to do a Lumbar Puncture to confirm the findings of the EMG.
It was about this time that I contacted my wife's doctor, who is a
Homeopathic Doctor. We had talked many times before about Homeopathic
and MS, Cancer, and other illnesses. He maintained that Homeopathic
Medicine could successfully treat these diseases. The problem, he said,
was that even patients who he had treated for many many years, when
faced with these diseases, would get scared and seek traditional
medicine over Homeopathic.
I had my Spinal Tap, and then a week of severe headaches. The
Neurologist grossly understated the potential for headache after that
procedure. The Saturday after the Spinal Tap, on the way home from my
daughter's soccer game, we had to pull over so that I could throw up,
the headaches were so bad.
And the waiting! The more I waited for the Neurologist to call, the
greater my resolve to give the Homeopathic guy a chance. What did I
have to lose? Time? Hardly! So I made an appointment with the
Homeopathic doctor, and on the same day, the Neurologist called and
told me that I had Accute Chronic Demyelinating Polyneuropathy, or as
he said, Guillain Barre on a slow burn. He thought that the best
treatment would be IVIG, but would have to put that before the
committee of Neurologists, and anyway in the meantime wait to find out
of my insurance company would cover the treatment. He said that would take about thirty days. This was April 1.
I
went to the Homeopathic doctor and he explained that the insurance
company and most of the medical community does not recognize
Homeopathic medicine. As far as they were concerned, I was not getting
treatment from him. We had a three hour interview in which we talked
about my job, my family. We did talk about symptoms and very
specifically too. He gave me a remedy and told me to keep careful
documentation of everything, which is something I was doing anyway.
A week later I began to feel a little better. The pins and needles were
not so bad, the water wasn't as cold. Every day, every week, something
was getting better. At the same time, I started a yoga class. I had
been thinking about this and shopped it carefully. I picked Hatha yoga
because it was NOT a "workout". My instructor tailors my class for me
and emphasizes that I should only do as much as I am able. I knew that
was a good decision from the first pose. The instructor had me lie on
my back with my feet on the wall, legs straight, arms out, and just
breathe. For the first time since February, my feet stopped tingling,
the numbness melted away and I could feel my feet again!
Thirty days passed and I didn't hear from my insurance company. The
Neurologist's office called to say that they had not forgotten about
me, but my insurance company had not responded. Six weeks, nothing.
Sixty days go by, still nothing. Meanwhile, I'm improving. April 25th I
rode my bike a few miles (seemed like 100), and by the end of May, I
rode my bike to work again. Still, my insurance company had not made a
decision.
Around the second week of June, I got a letter from the insurance
company stating that they would cover my treatment (Congratulations?),
and the Neurologist called to schedule.
Well it had become something of a joke between my wife and I, "when
would the Neurologist call". Do you have any idea how good it felt to
tell them that I didn't need their treatment? Pretty good.
I
have continued my Homeopathic remedies, and I continue to improve. I
rode the entire 150 miles of the Midland Texas MS150 bike ride this
past July, and have resumed running. I ride my bike to work three days
a week (hope to improve that to four days per week by next month) and
run somewhere around 10 miles per week.
Even while waiting to find out what was going on with my body, I
researched the various things that we were testing for and what the
possible treatments consisted of, what they cost, what my insurance
would cover... and the NMSS (National Multiple Sclerosis Society) website was very useful for that. The
one thing from my experience that I would want to pass on to others is,
don't sit and wait. Get on a list and go get on another list. Try the
unconventional, try homeopathic while your waiting for everything else.
Try yoga. It might make you feel better and if it doesn't then you
don't have to keep doing it, but there's not much investment.
`````
Guess they didn't like what I had to say?
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| Recovery takes a long time, a lonnnnng time! I was glad to have
completed that ride because I wasn't sure if I was capable yet or not.
But now that I know that I am capable, time to step it up a notch.
Commuting to work on my bike three days a week, and at the point of the
Midland ride I had been back doing that for six weeks. So every week
since (now 3 weeks) I'm taking a section of the commute and doing it in
the big ring.
I had waited until after the ride to start running again, and there is
still a lot of rust to knock off. I put on some weight while I was
unable to work out and that will take some time to get rid of 
But I try not to worry about that. The good things are that I can ride my bike again, I can get out and run again.
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| This is the story of my ms150, this is the story of an experience, it is the story of a sandwich.
Because the experience was like a sandwich. There was the bicycle
riding, which was one kind of experience, and then there were the parts
just before and just after the bicycle riding, which were very
different experiences.
But first, a picture.
Okay well the hard part was the driiiive, because it is 300 miles from
Dallas to Midland. It started badly because when I got past Ft. Worth I
realized that NPR wasn't going to hang in there much longer and when I
reached for a cd to play.... I realized that my Chupacabara daughter
had removed them from the car the night before. Desperate, I checked
and found that there was in fact ONE cd left, in the player. So I
listened to:
Bob Dylan's 115th dream,
Cake, singing Jesus wrote a blank check
The Pixies, Caribou
Gin and Tonic Blues, by the Reverend Horton Heat
Shonen Knife: One Week
Roi, by The Breeders
donner party - birthday suit
donner party - king chico
doors - alabama song
doors - 5 to 1
blues brothers - she caught the katy
sonic youth - ca plane pour moi
x - ??
talking heads - making flippy flop
talking heads - drugs
Occasionally there was some good radio but for the most part.. no. I
stopped at Sonic and got me a junior cheezborger for breakfast.
In Ranger there is a really good Hill. Tim has told me about this hill,
as a traveling musician, it has been his job to drive the van up the
hill on numerous occasions and he said it is definitely the biggest
hill in the middle of Texas. He may be right on that.
I finally got close to Midland, took the i-20 business exit and
promptly forgot to take the 250 loop, so I came in to a dirty town
through the dirty back door. It made me think of Las Vegas. Not the
pretty Las Vegas that you go to. The ugly Las Vegas that you don't go
to. Eventually though, I found myself in downtown Midland, on Big
Spring street, and got things sorted out. I drove north, to find EOG,
which would serve as the starting point for the ride. And I also had my
eyes open for a cheap motel. I had failed to make reservations at any
of the more legitimate places and now they were all full up. EOG had
covered parking, I noticed, and I doubted that anyone would mind if I
pulled in a little early and took me a nap. But it was reallly hot out
there and something with a/c would be nice. And something to eat. So
after locating EOG (the base) I went back from where I came looking for
gasoline, lodging, food.
And there underneath the I-20 overpass on Big Spring, I was waiting for
the light to turn green and at once there was a crunching noise and my
car was shoved forward ten feet or so. I turned around to see what that
matter was and a young man with a very apologetic look on his face
waved. We pulled in to the parking lot of the gas station and called
the Midland police to get a report.
He was a very nice young man. I could tell he had never been screwed by
a big insurance company, so I'm glad I met him when I did. No-one is
ever the same after that.
He had a dachsundt who wouldn't stay in the back of his truck, and I
had a fairly smashed rear quarter panel. Conveniently though, I had my
gas station, and very nearby, a pair of cheap motels to choose from. I
chose "The Western Inn".
It had one bed, the other bed had been removed. Thank God I wasn't
traveling with anybody because they would have complained about that.
But I thought it great that I had a yoga space in my room, plus room
for my bike. The downer was that there was no complimentary coffee
maker in the room.
I drove around Midland, and determined that there were only Mexican
restaraunts and fast food chains there, but I remembered that there was
a cafe of some sort next to the motel so I went there. It turned out to
be another Mexican restaraunt. But they had OLN, and I could watch
highlights of the the days Tour stage.
Back at the room, I finished watching the highlights of the Tour. I
called my insurance guy and reported the accident. I called my wife and
told her about the day and finally called Tim, to make him feel bad
that he wasn't riding his bike tomorrow. Yeah, I'm a bastard.
Next day, I woke up early and ate the fruit and cereal bars I had
brought with me. packed up and left, stopping by 7-11 to pick up hot
water for tea. Damn, I gave up coffee and at times like this, it really
sucks giving up coffee. But Earl Gray in the morning is good stuff. At
least it's caffeinated. At EOG, people were arriving. Time to load up
the bags, get the bikes adjusted and drink up. Time to take a team
picture. Which I haven't received yet.
At 7 o'clock, we started and someone promptly fell straight over!
Nothing hurt but her pride though. Here, the weekend took a turn for
the better. I could forget about my smashed up car, my low cash status
(had to pay cash for the motel), and the fact that I don't have any
coffee. Now it's just roads and I can take joy in the sound of my
wheels singing on the road. I had just picked up my new front wheel,
and it sounds like one of those "singing bowls", it is an 18 spoke
wheel and is strung verrrry tight. We were in to the wind but it wasn't
bad. And finally hit a highway and headed east for 40 miles or so. The
first rest stop had Mimosas...
I would have taken pictures at all of the rest stops but they were so
much alike that I didn't. Still, I love the volunteers on these rides.
I would say that all volunteers rock, but on these MS rides, everybody
is a little special. They all have a good reason to be there on
Saturday Morning instead of in bed and it might have to do with a
friend or a relative who has MS, and they want to do something special
for them.
At fifty miles, we headed North, got the wind behind us, and also coincidentally that was the lunch stop.
PBJ - yuk! I'll have a bananna instead... never thought I would say that. It was over 100 degrees already and only 10:00.
That's my bike, being held by the very small person with the red visor...
At the next stop, I discovered that I had a flat - on the front! Wow,
that never happens. I was lucky though, to have my flat at a rest area,
instead of someplace in between, because there wasn't any shade! The
little mesquite trees were quite stunted, and were smaller than me!
Finally, some civilization! I wasn't really drinking as much as I
should and could feel my legs tightening up. It was good to reach the
days end. 78 miles on my cyclometer.
There was barbeque for the second lunch, free massage and Tour
highlights on OLN while you waited. For dinner we had fish, shrimp,
chicken and lots of ice cream. Okay, not real healthy but nobody
objected.
Lodging was in the dorms at a school for the deaf, in Big Spring.
Next morning, I took a little warmup ride and discovered some monuments nearby
The rollout was mostly downhill and fasssst. I took it easy though, the
word was that "heart attack hill" was right at the end of the day, and
was 2 miles of 8 percent grade! Sounded tough and I worried because my
legs were cramping at the end of the day before. I've never walked a
hill and don't intend to.
This day was much more scenic, not as flat. The hills were like those
you find around San Antonio, just not as high. Big long rollers that
you can't really get any momentum from.
Mesas, gorges and lots of little canyons.
Speaking of irony. It was somewhere out here in the desert, I made a
remark to myself "there will never be a Smart Car in West Texas", the
very next vehicle that I saw, the very next vehicle to pass me was
itself a Smart Car. "come back... "
I had intended to take a picture of "heart attack hill" It had been
likened to the hill in Ranger, remember that hill? That hill was a
baddass. But when I got to the hill, I forgot about the picture.
I didn't forget about my derailleur. I hadn't been able to use my
largest cog (only a 23) for about six months and I happened to see a
mechanic at the rest stop before the hill. I asked him to adjust my
bike and I had an extra bananna.
While waiting, I observed. The sag vehicle pulled up and I recognized
the bike. It had been on the back of the sag vehicle all morning. A
girl got out took her bike off the sag. She looked very fresh, like she
had spent the morning in air conditioning. It was 110 degrees out.
This shit really makes me mad. You can't do this in a race, hitch a
ride to the end and then get on and ride across the line. It
disrespects those who gut it out. My bike was ready, I got on. Looking
ahead, is that the hill?
These guys should ride in Austin sometime. Okay it was a tough hill but
nothing like the hill in Ranger. Still, it was fun getting to the top
and they had painted a polka dotted jersey on the road. I did feel like
King of the Mountain when I reached the top. And then just five miles
to the end... The sag vehicle passed me, baby girls bike was on the
back...
I arrived in Post around 12:00, 77 miles on my cyclometer, and was
greeted with cowbells, horns and cheerleaders! I got my BBQ, my shower,
and got in line for my massage. After massage I hung out and chatted
with people I met on the ride.
There's baby girl, interviewing people. A news anchor-woman, hmm. Hudathunkit?
The bus wouldn't leave until the last rider was in, and that was around
3:30, so lots of time to visit. We got back to midland around 5, and
now I was back to the bread of the sandwich. The truck carrying the
bikes was lost. Finally around 7, after lots of wondering if our bikes
were on eBay yet, the truck showed up. I loaded up, got me to
cheezeborgers from the 99 cent menu and headed for Dallas.
I had worried about falling asleep on the way home, and tried sleeping
on the bus but I couldn't I didn't get sleepy in the car either. Even
listening to the same songs over and over and over and over. It was a
long long drive though, I got home around 1am.
Whew! Next year, San Antonio to Corpus Christy.
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| Well that was an adventure... I'm still winding down and recovering... I did take pictures and will post some.
Lets see, I did find a place to stay the night, had a little fender
bender... I actually spent more time driving than I did riding my
bike!! 12 hours driving there and back, 9 hours 19 minutes on the
bike.. man, my butt is sore 
Chipseal, Roadkill, Mesas, dried riverbeds, Oil Fields, Wind Farms,
Snakes, Buzzards, and oh yeah, what song was stuck in my head? Jelly
Bones, by the Unicorns. Coulda been worse I guess.
Yeah you know when you see the giant windmills that you're going to
have a really easy day, or a really hard day! Fortunately for me the
wind was at my back.
I feel some closure, at the end of this ride. I registered, not knowing
if I would even be able to go out and cheer on other riders, or if I
would ride it myself. Fortunately everything came together like I hoped
it would.
Now for that half marathon in November....
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