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 32!

I have officially made it past the one month mark! WHOO HOO!!!! For the most part things are going really well. I had a couple bad days this week but I'm blaming the steroids for that. I don't really know if it was the steroids, but that's what I'm going with. LOL Anyway, Tuesday and Wednesday were really bad for me. My blood pressure was high and my blood sugars were REALLY high. I am currently tapering off the steroids and there are all kinds of side effects that can happen with that so I'm assuming that's all it is. Tuesday was so bad that my head was spinning, I was having headaches....it was crazy. It was one of those days where I just thought, great, I've been doing so good...this sucks! Fortunately I was seen in the clinic and they restarted me on Lisinopril for the blood pressure and I have been really watching what I am eating and my blood sugar levels. The last two days I have been better!

It will be normal for me to have some off days, I'm sure, especially as I come off the steroids. Let me tell you what....I CAN'T wait for the day I don't need those anymore. And it may be sooner than originally thought. See my taper schedule for transplant will actually be done as of Tuesday. They were only planning on tapering me down to 20mg because that is the maintenance dose I was on for my lungs. Thing is, my lungs are doing so well that my Pulmonary doc is going to taper me down to 15mg. I will likely stay on 15mg for a while to see how I do, but the plan is to get me off of them! That will be SO nice. :) It turns out a relatively high number of transplant patients (doesn't even matter what kind of transplant) seem to do much better with their asthma post-transplant. They don't know why but that's what the research shows. Now, that's one side effect I am happy about! So far that seems to be the case too. The reason he is keeping me on 15mg is because when I get home it will be a change in environment and we just don't know how my lungs will respond once I'm home. There is much more dust, wind and pollen at home and these are all things that kick up the asthma, so we shall see. We are VERY hopeful however!

We have a tentative go home date coming up. I am doing so well and my numbers are looking good that we were hoping to make it home by the end of the month, but that isn't going to happen now. You see just because you go home doesn't mean you are completely out of the woods. It is important to have an Oncologist who can follow you and you still require weekly blood draws. This way if you happen to get an infection they can catch it and do something about it. Basically until you can get in to a local doc who can manage your long-term care, you can't go home. And, you wouldn't want to. After all the most important thing to to stay on top of your health and be safe about it! Plus there are things that need to be done before I can leave....like having my Hickman removed. I am also taking advantage of this time here to follow-up with my regular Seattle docs (Sleep Med, Pulmonary, Endocrin) both as follow-up post-transplant and to make sure that I am all set before I go home, which hopefully will mean I don't need to come back for awhile. It would be nice if I didn't have to travel the mountains this winter. More than anything I am looking forward to being home for the holidays, focusing on my recovery and spending time with my family. My mom has been here with me throughout this whole thing and I really appreciate all she has done. It has been great to have this time with her. But, I miss the rest of my family as does she. It will be the best holiday gift ever for us to all be together at home!

I hope this finds each of you doing well. Have a great weekend. Take care!

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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 story...my life with MS (among other things).

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