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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Where Has the Time Gone?????

My goodness, it has been what? a month and a half since I last posted. Where has all the time gone? My dad said to me today "are you gonna do a post on your blog, it's been since the middle of April" so here I am. Actually, I have thought several times that I need to get on here and post, it has just been a crazy time. A lot has happened since my last post.

I am finally getting better. I am starting to be able to walk again without my walker or cane. When I go out of course I use the cane because I would rather be safe than sorry, but yesterday we went into a pharmacy after my appointment with the Ortho and we really did not have much walking to do so I decided to go without my cane when Justin starts laughing at me and told me I look like I'm drunk walking without it because I am still so wobbly. Thanks! In all seriousness though, this has been a really long journey and recovery.

My last post I let you all know that I ended up with Meningitis again, well it appears that I am finally healing from all that and it is gone. The doctor's are pretty certain that it was indeed caused by the Bactrim and took me off of that medication. Interestingly enough almost immediately after being taken off that medication I started to get better. As a matter of fact, I am finally starting to feel like myself again (that is until I get up to walk....that is getting better but it's a slow recovery). Having a Meningitis reaction is so rare with Bactrim that before me there have only been 27 documented cases, and one of my doctor's last week told me he has only seen it one other time and that was 12 YEARS ago. Crazy!

Last week my Dad and I travelled to Seattle so I could be a guinea pig. Actually we went there because the transplant team/researchers wanted to get some more information so they can look closer at my immune system and see if they can determine why I had this reaction. This was all for research and I agreed to do it because I think it is so important for them to get as much information as they possibly can. You see, before the Meningitis I was doing great, better than I had been in years, even before my diagnosis and pretty much everyone else who has done this transplant has done so well, even gotten their life back. I really believe in this and hope that this can become an option for others with MS who have failed other therapies, this is a chance for those people to have their lives back and so it's important that the doctor's learn all they can, especially when I had a reaction to one of the post-transplant medicines. The more they learn about what happened the better off everyone will be.

We went over Sunday night as my first test was scheduled for Monday at 8:20. Monday we were kind of all over Seattle, it seemed. LOL My appointment was at the UW Hospital for an echocardiogram, then we headed to the SCCA where I had a pulmonary function test and blood work. Next we headed to Swedish where I had an appointment with my Study Neurologist and a spinal tap, more blood work and lastly we went back to the SCCA for an assessment with my Study Oncologist. Talk about a busy day! Tuesday brought a very early (10 to 7) appointment to have a central line placed then I went up to have Leukapheresis done. These were the only things I had to do that day, and finally Wednesday I went in and had my line pulled, a bone marrow biopsy and then a 2-hour MRI. From what I have heard, the preliminary results are all great! In fact, the Pulmonary tech showed me the difference between now and when I did the test before my transplant and amazingly my lung function base line before taking albuterol is now what it was after albuterol before the transplant. AMAZING!!! Now that's one side effect I am all for. :)

This was actually our second trip to Seattle since the last time I posted and I am happy to say that my doctor's were quite pleased with how I am recovering. It is amazing to think what a medication can do to a person when it just doesn't work for them. I feel like I am quite lucky. I now look back on mid-February when all this started and I have come so far! I may be still recovering and wobbly when I walk but 3 months ago I was not walking or talking. At one point after the first bought of Meningitis I remember being so worried that I would never recover, so scared at what life was going to be like, not sure I would ever be able to walk on my own again or go anywhere without a depends because I had no control over my lower body muscles. It is amazing what our brain can do, how things can heal. With just the right amount of pushing forward each day (without doing too much, trust me I have had those days where I pushed too hard and then regretted it as I went backwards for a few days) eventually we can heal.

In fact I am finally able to drive again, something I have not done in months. It had been so long since I drove that today when I got to my dad's house and looked at my car I realized that my tabs had expired (months ago). Oops!!! Needless to say I went and got new tabs for my car today. :) Tuesday I started the MS yoga class and I'm really hoping that will help my muscle memory, as I've heard it can. Also, my foot is finally healed! My Ortho did x-rays yesterday and the fractures I had (both of them) in my foot are finally healed. Things are good! One last thing about me...my hair is finally really growing. I know, it has taken a long time to get here, but I just had to share because it is so different. My hair was straight as a board before the transplant and now it is curly, SUPER curly! I wasn't so sure about it at first, but with it still being so short I am really happy about this change as it at least gives me a bit of style. Plus, it might be kind of fun having curly hair. :)

Okay, enough about me. Last time I posted I mentioned that we had just found out my best friend had a brain tumor. Well, I am happy to report that she had her surgery and is doing well. She is recovering, probably slower than she would like, but she is recovering! They were able to get the whole thing and said that if you have to have a brain tumor this was the best kind to have. In fact she did so well after the surgery (which was on a Wednesday) they let her out of the hospital to go home that Friday. She has had some weakness on her left side, had had to use a walker, but with each day gets a little better. What a relief!

Anyway, I hope you are all doing well and I will do my best not to take SO long to post next time. Take care and have a wonderful Memorial Day weekend!

5 comments:

Diane J Standiford said...

Glad to hear things are looking up. It is so scary when you can't see an end to an illness. With MS, it will always get better in time.

Webster said...

I am so pleased to hear that all of your tests have you passing with good results. Keep going with the one day at a time attitude, and the yoga is sure to help. You are a real trooper, Jaime.

Oh, a ?. Since this was a study, did your insurance have to pay for any of it?

Jodi said...

Glad you are doing better! I think it is great that you are participating in the research study. It is very important for people to do this.

Jeffrey said...

It is unfortunate that we can not do anything against chronic diseases such as cancer, AIDS, arthritis, etc. We just want to tell friend is to be strong and that these moments of pain we have to assimilate knowledge, God rest his soul ...

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David Keating
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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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