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.
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Sorry that it has been a little while since I last posted. I have been extremely tired lately. I was told that the less steroids you are on the more fatigue you can experience and so I am guessing that is what is happening with me right now. However, this whole process does a number on the body and it just may be that my body has needed more rest in order to heal. Whatever the case may be it is quite the adjustment. Also being back at home is quite the adjustment. As happy as I am to be here, I never realized how difficult it could be. It is hard to be home and mentally feel as if I should be able to go back to the way things were (and actually hoping to be able to do more then before) only my body is not ready for that. It is strange really, in a lot of ways I think I was doing better when I was still in least from an organizational standpoint. Things were more structured and I think that because I was there and knew I had no control over things happening here at home there was a part of me that had less stress. Now that I am back at home, all of the stress I had previously has returned. And we all know how stress is with our health. NOT GOOD!

Over all I think I am doing well though. My blood counts continue to improve. I am on a regular schedule for getting my blood work done and I continue to be CMV & EBV negative. These are two viruses they monitor very closely because they can be life-threatening for someone after a transplant. Many people in this country have been exposed to these viruses (EBV for example is associated with mono) and if you have been before the transplant they have to be especially careful to make sure the virus is not reactivated while you essentially have no immune system. I have been very fortunate in the sense that I was never exposed to either of these and so now we just have to keep it that way!

I am hopeful that as I have more energy I will be better about keeping you all up to date. I appreciate the emails and comments asking how I am doing and if I am okay. I assure you that I am okay just tired and taking it easy. I hope that you are all doing good as well. Take care!


Webster said...

Hi Jaime,
Stay healthy and keep positive, take it day by day, and last but not least, have a Happy Thanksgiving, whether or not you can do all the things you used to be able to do. I admire you.

Be well,

Have Myelin? said...

I am glad you are doing well. =) Fatigue sucks...I know.

Gabrielle Turner said...

Hi Jaime,
I'm really glad that you are home now! What a blessing to be home for the holidays.
Don't get discouraged, there are a lot of points in this journey that are 2 steps forward and 1 step back. I didn't feel like I could even begin to take care of things at home until after I'd been home about 6 weeks.

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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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