Thursday, August 27, 2009

What's up.

Well, I haven't been very forthcoming in passing out information about my life over the last 6 weeks--I didn't really want anyone to worry...

You don't ever really expect to get sick--at least not a sickness that rest, time, and doctors can't fix. But I'm quickly learning that life throws curve balls sometimes. And from a christian standpoint, Satan seems to attack your emotional health at the exact moments you're down physically. That's all I'll say about that.

So, here I am, 6 miserable weeks into some mysterious illness that no one can explain. I'm suffering from dry mouth, inability to swallow food, inability to digest food, uncontrollable bowels and bladder, extreme fatigue with muscle weakness, and inability to control my muscles as I should be able to.

The worse symptom, I think, is the eyes. I can't see--and haven't been able to for about 5 weeks now. One day I noticed that they weren't focusing as they should be--then before I knew it, my pupils were permanently dilated. I've since learned that whatever else may be the cause, the result, as least for my eyes is Adie's Syndrome. Ick.

I can't walk well--my muscle coordination is off. I don't have the energy to walk hardly more that 30 steps at any one time and I can barely get up the 3 steps into my house.

Essentially--in 6 weeks, I have been transformed from a healthy running-with-my-dog, jumping-my-horse, sailing-with-my-boyfriend, 25 year old into an 85 year old with the vision of a 70 year old. I mean, really, my 86 year old grandmother has more stamina these days than I do. Shameful. I wear contacts for distance and reading glasses for up close and still can't see well in the middle.

In the past 6 weeks, I have been to 11 doctors ranging from general practicioners to super-specialists; these 11 have conferred with at least 7 others. They have taken 30 vials of blood in the past 10 days; during my 5 day hospital stay, I had these tests run: MRI, MRA, MRV of brain; x-rays of chest and abdomen; modified barium swallow; EMG nerve conductivity study; ultrasound of my heart; spinal tap (YUCK to the required 24 hours lay flat period following that one) and PFTs (pulmonary function tests). I was treated by neurology, radiology, cardiology, respiratory therapy, speech therapy, and physical therapy.

And nobody knows anything. Tests are normal. We have a long, extensive list of what it's NOT including: HIV positive, syphilis, MS, Guillian-Barre, Eppstein-Barr.

I need Dr. House.

I am currently undergoing a 5 day super-intense treatment with Solumedrol via IV. That, in itself, is bad enough. They tell me there is a 50/50 chance that this will help a little. Maybe give me a little energy until more tests come back. Conclusion: Steroids are Bad.

In an attempt not to weigh down this blog anymore, I'll be writing more in depth about this at my other blog: akingsalaysay.blogspot.com. *

*we don't know if it's miller-fisher syndrome, but the symptoms seem to fit better than anything else I've researched thus far...

2 comments:

The Bravos said...

Jess, if you want to go the holistic route, my mom's number is 334-397-4648. i think you should give it a shot.

i'll be praying for you jess, i love you.

p.s. if only dr. house were real :) you'd give him a run for his money...

Ashley Bybee Stepp said...

oh Jess! I am so sorry! I've been through the mysterious illnesses and continuous doctors, ect with no results and while I don't think it was ever to your extreme, IT SUCKS! I'm praying for you. If I run into Dr. House, I'll send him over ASAP! ;)