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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6 Years with MS

Where has the time gone? Today is the 6 year anniversary of my MS and what a 6 years it has been. Lots of ups and downs, LOTS of changes....some good, some bad. I'm sure you all understand just what I mean as this illness of ours is never quite the same....we all are different but at the same time we are the same. I know that may sound strange but for those of you reading this who have MS, I'm sure you know just what I mean.

I remember the day I was diagnosed like it was yesterday. It was a Friday the 13th, which is probably in part why I remember this so well....one of those, that figures moments, but also it was such a life changing thing. I was at work when my doctor called me and confirmed what I already suspected. I have MS. I, unlike many people I have met with MS over the years, was quite familiar with MS as I had known a couple people who have MS as well as working in the medical field. The problem is that as much as I thought I knew, there was so much more to learn. I may have been familiar with the uncertainty that comes with MS, the fact that we all respond different and the idea that the best thing to do is to get on a disease modifying medication right away. What I did not know is what kind of help was out there, how many people this illness has affected, where to get information and how I was going to tackle this challenge so that I could just get on with my life.

I think I spent the next 2 or 3 days doing research on the internet, learning all I could about MS. I immediately got involved with the NMSS, joined the walk that year, got on Copaxone and then pretty much tried to ignore the fact I have MS and lived my life the same as I always had. Problem was the MS was not about to let that happen. By May I had my first relapse since the diagnosis and it was progression from there on out.

The last 6 years I have tried every FDA approved medication that I qualified for, without much success. I have had more steroids than I think anyone should have in their LIFE. I spent time using a cane, walker and wheelchair. I have been hospitalized so many times you would think it was my second home. I had to quit working so that I could focus on my health and try to make things work. Basically life as I knew it was over and I had to find a way to make it work.....something I have been doing ever since.

As you all are aware, my biggest challenge yet came this past year when I made the decision to participate in the HALT MS study and go through a Stem Cell Transplant. So far I think it is pretty much a success. I have done quite well when it comes to my MS. Sure every once in a while I will have a symptom, but it is NOTHING like before the transplant. And, I'm only 4 months out. The real test I am sure will be the year mark as hopefully my immune system will be stronger and I won't be at risk of getting sick. I think that is when I will really know (or at least have a better idea) if this worked.

So after 6 years I think I have grown as a person to become a better person. I have really had to take a step back and look at my life and what is important in my life. And, probably most importantly I have (or at least I hope I have) learned to better appreciate my family and friends. Without them I could never have been as strong as I have had to be.

3 comments:

loveable_homebody said...

This is a beautiful story. 6 years is a long time and I'm sure this is an emotional anniversary. I'm so glad your family and friends help you so much! Do you often get really scared, having MS?

Enjoying the Ride said...

Jaime,

Happy Anniversary! No, that doesn't seem right. Condolences! No, that's not right either. I went ot the Hallmark Store to find you a "Happy Diagnosis Anniversary" card, but the clerk said she had just sold the last one.

Seriously though, isn't it amazing to think back on what we've been through since diagnosis. If someone had told me 8 years ago what this trip would have been like, I think I would have freaked out. But by taking it just one day at a time, here I am, not freaked out.

Good luck.

svrbrownsuga said...

Hi Jaime,
I recently found out that I have MS (april 13) I want you to know that you are wonderful and so strong. I just started a blog on my process nothing much to it but I'd love to hear from you :D take care and God bless


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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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