My life with CIDP

Ok so getting back on track with my history I am now on to my next fall, ER visit, hospital stay. Oh what fun it was...NOT. I had come home from the stay for the blood clot Wednesday. I kept myself moving, I was really tired but planned to go back to work on Monday so I didn't want to get lazy. I was still staying with mom & dad and mom & I decided to go pick up a pizza late Saturday afternoon. She would drive of course, but I got to get out and get some fresh air. As I took a step out the back door I went down like a sack of taters. I felt it coming and there was nothing I could do, just go down and struggle to get back up after. I cried instead, then had them help get me up and to a chair. I called Dr Greasy, but he wasn't on call, one of his partners was, Dr Dick. When Dr Dick called me back he proceeded to tell me that GBS does not relapse and it was ALL IN MY HEAD. There was nothing wrong with me. Not to go to the ER because he would just send me home. So I hung ...

I just wanted to deviate from my history for a quick post and give an update on how I am currently doing. I was feeling good in 2009 and we (my Dr & I, not just her) decided to make some changes to my medications, some were good and some not so much.  I know you're probably thinking why change when you felt good? But as people who are on immuno suppressants know, they are bad for you in the long run so the lower the dose the "better" and if you can eventually get off them its even better. I was on 200mg of Cyclosporine daily and like I said I was feeling good, I didn't sleep much but I was ok with that but I developed a tremor in my left hand that I just couldn't take anymore. I was on Propronolol for it & it improved some but after a while it got bad again. So we decreased the Cyclosporine very slowly. like 25mg every 2 weeks so that we weren't giving my system a huge shock. If you have any kind of chronic illness you should know not to shock your sy...

Now on to my DVT, fancy name for a blood clot. I had been out of the hospital about a week, give or take a few days, and my right arm seemed a little swollen on Saturday night. I hadn't been told to watch out for anything when I was released from the hospital. My doctors had told me that the plasma pheresis would remove my clotting factors so I had no reason to suspect that one would form. On Sunday morning I woke up and my right arm was so swollen my bracelet was making an indention. My mom took me to the ER and after hours of waiting a sonogram was done (by a girl I graduated with that my brother had gone out with, that I didn't particularly like, but she was professional so it was ok) and it was diagnosed that I had a DVT, deep vein thrombosis. Just a fancy way of saying a blood clot. I'm sure there is technically a difference, but honestly blood has clotted in your veins. I'm just sayin' if you aren't a doctor its the same thing. So I was admitted again, g...

This is a little out of order in my trying to give a 6 year history but needs to be said and its too long to add to another post. When things first started happening to me no one ever said "you should go to a Dr." When I fell the first time at the races we all thought I had just fell because I was walking along the top of the bleachers and not where I should have been walking. When I fell in the parking lot I had on high healed sandals so what, I fell. Yes I had cut my leg and didn't feel it but, hey it didn't hurt. Who goes to the Dr because they cut their leg, unless its a huge gash that needs stitches?  but I did go to chiropractor when my fingers went numb and he said I had pinched a nerve. When I took a nose dive off the porch I went to the Dr and they said I was fine, continue with chiropractor treatments.           Growing up in my family we didn't go to the Dr for every little thing. If you had a cold you stayed home from sch...

So I had a spinal tap that said I had high proteins that confirmed to the Dr that I had GBS. I had a central line put in (2 times first one didn't work) and my first oil change done. We did an oil change every other day and by the time we got to the last one I just wanted to go home. I convinced the Dr to let me out and I would come back as an outpatient for the last treatment on Monday and I would see him in his office as soon as he wanted me. (I don't remember how soon that was) So instead of going back to my home my parents wanted me to come stay with them till I was better because if something happened I would be alone if my brother was working (he was on call with the RR 24/7/365) so I slept in their room and they slept in my old room on a blow up mattress (with a slow leak). I visited with my cats and slept in "my own bed" and went back to the hospital on Monday for my last treatment and to have the line removed. The treatment went fine and Judy called the Dr ...

It has come to my attention that I haven't given a description of the pain I experience. Mostly because...well it hurts too much.    When your nerves demylenate (after all these years I really should learn to spell that because spell check has no suggestions) your nerves are basically fraying like an electrical cord. If they are looked at under a biopsy they tell me that they look like onion layers from being ripped apart by our own immune systems. The exposed nerve is hyper sensitive and for me the slightest touch hurts like hell. Not everyone experiences the pain the same way. Mine burns, others stab, others say they tingle and are numb. To me the word "numb" means you don't feel any pain, numb would be a Godsend. But I get the idea of numb from the tingling because my hands & feet tingle in the beginning, then they burn. Up until two years ago when Doctors or nurses asked me to describe the pain I had trouble getting across just how badly I hurt.     ...