My life with CIDP

The morning of September 9, 2005 I was taken to have a spinal tap done. a few hours later Dr Quack came in and said that I had elevated proteins in my spinal fluid which indicated that I had GBS. I asked what GBS was and he just gave me vague answers. Like your immune system is out of whack and is attacking your nervous system which is making you so weak. We are going to do plasma pheresis (or plasma exchange as some of you know it) (My family called it an oil change.) He and the nurses assured me that I would have a full recovery in 3 weeks and could go back to work in 2 weeks. I thought COOL! FULL RECOVERY in 3 weeks, awesome. I had just started to date this great guy and if there was a chance at a full recovery I had a chance at him. (wink wink) That after noon (this was a Friday) Dr. Dork, a surgeon, came by my room to tell me that he would be putting a central line in my neck in the morning (Saturday) for the plasma pheresis team to run the treatment...

Before I get into the diagnosis I MUST tell you about the funniest time I fell, it wasn't funny at the time but looking back it had to be spectacular. I had resorted to taking my book and purse to my car in the morning and going back into the house for my lunch and drink because it was too much to carry them all at the same time. So I was going back up the stairs of the deck (which had no rails) and my legs gave way and I took a nose dive off the edge of the deck and did a face plant into the dirt! I had on a skirt which was now over my head, my underwear got caught on the box hedge, my shirt had slid up over my chest and my face was about 6 inches from a fire ant hill! OMG what a sight I had to have been. I rolled over, adjusted my clothes and laid on the ground fuming, I knew I couldn't get up and I knew nothing was broken. No one was home and my cell phone was in my purse in the car 50 feet from me. Luckily the man who lived across the street was out walking ...

In May of 2005 I was a healthy happy 30 year old. Single with no kids, my life was great, maybe that was the real trigger! I got the flu some time in mid May, don't remember the exact dates, just being sick and deluding myself into thinking it was just "my allergies". 4th of July weekend I went to visit a friend for the weekend. We went to a local race track on Saturday night to watch the races and fireworks. At some point that night I was walking along a row of bleachers and twisted my ankle and fell. (Yeah I looked like a sloppy drunk, but I don't drink.) I thought nothing of it because I'm a klutz. I also got the flu again that weekend. Then in mid August I fell in the parking lot at work. I wore heels every day to work and, again... I'm a klutz. So I thought nothing of my falling other than me being me. When I fell I went down on my right knee and the palms of my hands. My hands were a little red but I just brushed them off and got in my car ...

I should have started this blog years ago but I just had too much going on. As anyone with a chronic illness will tell you, keep a journal because it helps. I didn't, so now its going to take me days if not weeks to post my history up till now. I am currently 37 and I became sick at 30 so I've got lots to say. I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. It is an auto-immune disease (or disorder, depending who you talk to) My immune system attacks the meylin sheath that coats the nerves and then my brain can't send the proper signals to my muscles to move. Oh, and it hurts like hell. When your brain can't send signals you become extremely weak, and it hurts. If I don't get treatment I get so weak that I am paralyzed from head to toe...and it HURTS. Some people have to be placed on a vent in order to breathe but I have not gotten that bad. Some people just get a little weak but most need walkers at the very least. Ok, so that pain I talked ...