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I am SO tired of Meningitis right now. I'm tired of being sick! Friday evening I ended up getting a fever AGAIN. Off to the hospital we went and they told me it would be VERY rare to develop meningitis after just having it and just having a normal LP a week prior. They did some labs which didn't look too bad, got my fever under control and let me go home. Since we were planning on doing Easter dinner at my parents on Saturday and Justin had to work I went and stayed at their house. I have been here since.

Saturday morning was not too bad. I was tired but otherwise feeling okay. My parents were planning on Easter dinner so my Grandma could come but she ended up getting sick. I think everyone who came had a good time though. About 3:30 I got really tired, as a matter of fact I didn't eat much...even though dinner looked really good. I ended up going to bed and slept till about 9:30 the next morning. I didn't feel very good when I got up and it turned out I had a fever again. My head hurt and so after calling the transplant Neurologist we ended up back at the hospital. He wanted me to go in and get a spinal tap (LP) and a MRI. Basically to make sure the meningitis was not back (which although is rare this quickly is possible) and to see if the MS was getting better. After several hours in the ER, and having the doctor tell me he would bet me his paycheck I don't have meningitis because I don't have the symptoms and he has seen lots of it so there is just NO WAY, the MRI showed my swelling is decreasing, MS is getting better but that there is signs of a previous hemorrhage (which did not show on previous MRI's, which makes us question if I did have a stroke when I was in the hospital the doctor's suspected). My blood work looked pretty good, all except my platelets which went from 264 on Friday to 115 on Sunday (which is low). The LP however showed the meningitis back. It is a more mild form as my WBC count was not anywhere as high as before but still. Not good. I joked with my dad that maybe I should ask him for his paycheck.

I have been staying at my parents so that Justin and Nathan could have as much normalcy as possible (not sure that happened) and that I could get some rest and not be alone. My dad is retired and so I have been hanging out with him. We have mainly been watching Season 1 & 2 of NCIS...I never got to see those and he had some of them recorded. Anyway, I have been getting lots of rest and doing my best to relax. Monday and Tuesday were not good days at all. Monday I fell twice just trying to get out of bed and to the bathroom. My fevers are still around but Tylenol seems to be helping. I am still having A LOT of MS problems. My walking is NOT good. I am barely getting around with a walker. (Sorry...this may be TMI for some of you) My ability to control my bladder and bowels are off....I have had more than a few accidents and then of course that only makes me more upset, I cry and then don't do well. I am VERY week and fatigued. More than anything I AM SICK & TIRED OF BEING THIS WAY. Aren't we all?

The worst part though is the last couple of days I have been feeling some depression which is not normal for me. I try not to get too upset or read too much into it because even though I am better than I was a month or so ago, the area of my brain with the new lesions and swelling is the area that controls the emotions. The last couple of days though I have felt as if I wished the meningitis/MS flare/Stroke....whatever I had in Feburary would have just killed me because then everyone else would have been better off. I know it would not be easy for my family but I think of them having to take care of me and how hard this is on everyone and at least if I died I would be at peace as would they once they had some mourning time. Of course I don't want to die or anything like that, I just hate seeing my family go through all this, having to take care of me, my inability to be able to help or do much of anything. It is really frustrating. I can barely muster up enough energy to take a shower. I have to have a shower chair, someone help get out what I need and then need a serious rest after. Just walking from room to room is hard for me. I thought I was getting better, and now I'm not so sure. All I can say is I need to get better soon! I can work with the walker, with the numbness, with many of the MS symptoms but watching my family have a hard time with this, be effected by all this, my son having an attitude because he says he doesn't know how to deal with all this, Justin being frustrated because he gets stuck doing everything (even though he says he is not frustrated and puts up with all this, helping with whatever I need, he seems that way). My parents helping out. It's just not easy for anyone, is it? Whether my deterioration is from the menengitis or sucks! I have been told I will recover and I am sure I will, but in the meantime it is not easy. So the sooner I get better the better off we will all be!

Tomorrow is Friday and I'm hoping a better day. Take care!


Webster said...

Jaime, I'm glad you are updating and telling us how it is with you. The 'follow-up' meningitis is like a slap in the face, and you have been through the wringer. You have every right to feel depressed. Hopefully these issues will resolve quickly, and you will be well enough to get on with your life. Take care.

Anonymous said...

jaime! i hope you will get through this bad stuff real soon! you are a dear friend you have been through more than anyone i know. i am here for you any time you want to chat you know where i am.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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