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O HAI

I've been putting off updating because there's so much to update about that it's overwhelming. The problem with writing a big entry is that my hands are still numb and one of the meds I'm on makes my eyes blurry and gives me double-vision, so I make a metric ton of typos. I've never been away from LiveJournal for this long, though, and I feel like I'm totally sequestered from the world. I'm just going to start posting again and include bits and pieces of what's happened over the pasrf yeaer with each entry.

I should start off by telling you that the disease I have is called Guillain-Barre Syndrome. And it's not even a disease, really. It's called a syndrome because modern medicine doesn't know enough about it to call it a disease. It's very rare and strike people so differently that it's hard for doctors to gather muuch information on it (plus, it can't help that there are neurologists, like the one who diagnosed me, who are so appathetic about the diagnoses and treatment of it that I can't immagine they'd contribute any data). So, there's not much to go on as far as treatments. My physical therapist wants to write a paper on it with me. We used a device called a "TENS unit", which applied light electrical shocks to some of the nerves around my spine, in effect canceling out the crippling nerve pain I was feeling. There hasn't been a paper written on this treatment since the 70's, so it's an important thing to do, I think. I hope it would help other people suffering the same symptoms.

This is what I've been doing for the past eleven months. It's been rough, man. And I've been pretty miserable and depressed. I'm sorry I've avoided some of you -- have promised to call and then didn't. I've been low. But I think it's getting a little better and I think reaching out to the outside world and making contact again will help. I've missed you guys

There's some kind of birdpocalypse going on outside. I've never heard so much angry tweeting.

Comments

( 19 comments — Leave a comment )
likeadeuce
Jul. 18th, 2009 05:32 pm (UTC)
Aww, hon. That totally sucks -- though it's positive that you (sort of) know what's wrong and have a chance to use your experience to help people. It is great to see you around and I'd love it if you'll continue to update.
(Deleted comment)
chaos_in_action
Jul. 18th, 2009 05:57 pm (UTC)
<3
antirealitygirl
Jul. 18th, 2009 06:44 pm (UTC)
<3 <3
pandorasaqua
Jul. 18th, 2009 07:24 pm (UTC)
Yay Kristin! I'm so glad you're back on LJ. Do you think you would be up to coming to my parents house tonight for a little partay? I'm going to be in town for the next two weeks (I'm housesitting/petsitting for my parents) so, don't feel pressured if you're not up for it. We can make other plans later in the week :) Either way, I can't wait to see you! I'm soooooo happy to hear that things are improving. I miss you and love you. Let me know if you can make it tonight. Muah!
resolute
Jul. 18th, 2009 08:00 pm (UTC)
Oh, good to see you again! I'm glad you at least know what the hell is going on -- take care --
liquidwhite
Jul. 18th, 2009 09:01 pm (UTC)
I love TENS and muscle stim machines, they are a godsend. I hope you have luck finding different ways to improve your condition. I'm glad to see you back!
second_batgirl
Jul. 18th, 2009 10:58 pm (UTC)
*hugs*
zenithfish
Jul. 18th, 2009 11:18 pm (UTC)
miss you! <3
romanticalgirl
Jul. 19th, 2009 12:21 am (UTC)
You've definitely been missed!
harmonyangel
Jul. 19th, 2009 12:52 am (UTC)
*hugs* Glad to know you're hanging in there, even if it totally sucks. You'll be in my thoughts.
lilacsigil
Jul. 19th, 2009 01:22 am (UTC)
Nice to see you back! And your icon! It's the Singulair girl! Her drug company is spamming our pharmacy at the moment.
inlovewithnight
Jul. 19th, 2009 02:51 am (UTC)
Glad to see you again!
inathunderstorm
Jul. 19th, 2009 07:27 am (UTC)
Oh, it's so good to see you! ::hugs:: I was thinking about you the other day, and I'm glad to see you posting. ::hugs you a lot::
none_too_subtle
Jul. 19th, 2009 04:13 pm (UTC)
It's good to see you update. I have a TENS unit (have had one since the mid-'80s) and use it frequently on my legs. I feel your pain. *hugs*
desideratum_ox
Jul. 19th, 2009 11:04 pm (UTC)
Yaaaay!! Well, not Yay that you've been ill, but whatever, let's here it for being sick too! Woooo.
chele
Jul. 24th, 2009 01:45 am (UTC)
omg I feel like you have been on a deserted island or something and I want to be like "SO LET ME UPDATE YOU ON THE WORLD DO YOU KNOW ABOUT TWITTER DID YOU KNOW THAT WE HAVE A BLACK GUY FOR PRESIDENT DID YOU KNOW MICHAEL JACKSON DIED"

anyway I miss you and I hope your treatments are making you feel better. I'm sorry you are so sick. Usually I have the impurest of thoughts, but any good ones I will be sending your way.
anita_drink
Aug. 4th, 2009 05:37 pm (UTC)
WOW. We clearly have a LOT to catch up on!
How are you feeling? Is anything working for you? How did you get this syndrome? Is this all stuff that I'll learn as I read back through your journal? Do you love answering questions as much as I love asking them?
zomgitskristin
Aug. 5th, 2009 06:54 pm (UTC)
I know, right? I was reading back in your journal and you have differeny friends and a different job and a different boyfriend and a different living situation and a different LIFE.

I'm feeling better. Still have a lot of pain and a lot of numbness, but I'm a million times better than I was a few months ago. I've been sick since last August. I got it from an infected bone in my toe, which none of my doctors figured out until a couple of months ago. It starts with something throwing the immune system off its nut. The immune system then attacks the body's nerves. I was almost to the needs-a-respirator point before my doctors figured it out and started treating me. I had IVIG treatment and was in the hospital for a total of four months and have been in physical therapy ever since. I have maybe six months to a year left to go in recovery. Plus, there's my toe, which is totally destroyed, but I probably get to keep it, so that's good. I told my orthopedic surgeon that I didn't care what they did, so long as I can wear heels again. Hahahaha.
( 19 comments — Leave a comment )