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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Day 19

Today is my Day 19 and with each day I am feeling better and better. I can't tell you how relieved I am to be starting to feel better. For a little while there I just was so anxious......I would be too weak to really do anything only my body wanted me to get up and move. Now I have gotten to a point where I can get up and move and it's all okay! The biggest thing now is for me to remember that I am still recovering and not to over do things. :)

My taste buds are finally coming back and I am able to eat some more food, real food. As a matter of fact I was able to eat 3 meals today.....okay, actually more like 2, but I am getting better. I had oatmeal for breakfast with a pear, attempted a chicken sandwich for lunch (which did not turn out to taste very well, hence the 2 meals vs. 3 meals) and my mom made a stuffed pork chop with baked potato for dinner. Oh and yeah, my mom is back in Seattle with me. We make a good team so it's nice. Justin was here all week (we also make a good team) but he had to return home for work. He works on the weekend so that he can be here with me during the week and then my mom works during the week so she can be here on the weekend. I am thinking my mom is going to have to stick around this week however as it turns out when Justin got to work last night several people had come down with the flu, one of which thinks she has the swine flu, Justin's not so convinced but we just can't take any chances.

Enough about that. So, here's the update. I am finally feeling better. Each day is better than the next. I am still on IV Fluids so that I don't get dehydrated and that my blood pressure stays good. The IV Fluids equals 32 oz and I'm supposed to get 100 oz of fluids a day, so I am making up the difference primarily with juice. Not to mention it takes me about 5 or 6 glasses of juice just to get down all the pills they have me on. Over time that will lessen as well. Currently they have me taking all these meds to make sure I don't get sick. There are anti-viral meds that I take twice a day, anti-fungal meds each morning, anti-bacterials that I take on Monday and Tuesdays, plus steroids (which I am SO happy to say I get to start tapering off as of my Day 21), there are meds to protect my liver (which is 4 pills a day), meds to protect my esophagus, meds to help with any residual MS symptoms (like urinary frequency, spacicity) not to mention all my asthma meds. It takes me most of the day to just take my pills. Oh and I'm now taking a multi-vitamin and calcium. I have to say I'm not sure if it is the multi-vitamin or just the whole experience, but for the first time in I can't remember how long my nails are growing and not splitting down the middle. I know that is probably such a small thing considering everything else I've gone through but I am quite excited that my nails are growing and strong. Go figure! :)

So the positive things is that with each day I have more and more energy. The negative is the number of pills I am currently taking. The positive is that that number of pills is temporary as the steroids will start to taper at day 21, a couple others end at day 60 and most others will be done by day 75. The negative is that I am still quite emotional. The positive is that I have determined more of why I get so seems to stem from when I am over doing myself, get tired, or when I think or hear of something to do with my family because I really miss them! Otherwise I am getting a better hold on it. So there you have it. Where I am right now in a nut shell. Still fighting the fight but taking it a day at a time.

Oh....and the BEST part, many of my MS symptoms are either gone or in much more mild form! I am not having headaches at all anymore. I almost can't believe it because for the last several years I had a headache on some level (whether mild or migraine) every day. It really is amazing. I am still having some numbness from time to time but it is getting better and the spasms are too getting better. I have not had a charly horse or major spasm in the arches of my feet or my toes since the transplant.....even at this early stage things are doing better!

Also, my PA told me at my last visit that I look great, kind of an overachiever trying to get better sooner than expected. Plus, she told me about two other MS patients who had transplants who are doing GREAT!!!! One is about 18 months out and the other is closer to two years out. Both of them have gone back to work full-time, both have NO signs of MS and one even had a baby. All good news. So, as difficult as some days can be, I have to remember that this is all for the best thing ever....the END of MS as I know it.

I hope that all of you are doing well and that your MS is behaving itself. Let's hope this clinical trial makes it to Phase 3 and sooner than later gets approved so that many more of us with MS can be in remission and even possibly cured! Now that would be nice. Until next time......


Jaime said...

Sounds like you are doing great!!!

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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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