This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
Testing & More....
Well I have been out of the hospital for two weeks and it has been the hardest time I have ever had. This flare, Meningitis that I have had seems to me that it has been even more difficult to get through than the transplant was. That may sound crazy, and well it may not be true because there is a lot of the transplant that I don't remember and there are parts of this Meningitis/MS flare that I don't remember. What I do know is that the recovery for this seems to be taking longer than I have ever taken to recover from anything. It has been over a month since I became sick and it has been a month now since I the MS flared. The doctor's tell me that I will recover, it will just take time and they are not kidding. I am still having a hard time walking, still having a hard time controlling my muscles but I think I am finally starting to get a little better. Today, for the first time since I got home I was able to walk to my room from the living room and back without my walker. This was early in the day and I was quite wobbly. I imagine that this must be what babies feel like when they are learning to walk. I did okay though, it is a first step and I will take any improvement at this point.
Friday I go into the local hospital to have a repeat spinal tap done to ensure that the Meningitis is gone. I am sure that it is because I am getting better, even if it is slow, and I don't have symptoms any more. Plus they say Meningitis takes about 2 weeks to get better and it's been over a month now. The MS flare, well that is another thing. They are planning to do another MRI on the 30th to make sure the MS flare is getting better. I guessing since the recovery has been this slow it is going to take longer than a week for me to get back to where I was but hopefully the MRI will show the lesions/swelling in my brain decreasing in size. Hopefully it will show improvement and be able to give them some idea as to how my recovery will go.
Fortunately I am finally getting to the point where I am able to stay up a little later. For a while there I was going to bed at like 7 or 8pm. Really early for me and then sleeping in plus taking a nap. I guess I needed it. Now I am able to sleep more on my normal schedule so hopefully that means I am getting closer getting better! One can hope, right?
Well, I hope you are all doing well. Take care!
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About Me
- Jaime
- 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 story...my life with MS (among other things).
MS Advocacy
MS Bloggers
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MS Links
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)
2 comments:
I'm sorry to hear about your many complications. It sounds so painful and arduous. I hope the flare up ends soon and your quality of life improves. The waiting and reduced mobility sound so frustrating.
You seem very attuned to your body. I don't know. Maybe that's only natural considering what you've been through? I don't know... I would never want to make assumptions about your life.
I really hope that your condition improves and that you start to feel better.
Our day WILL come. . .hopefully soon!
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