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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2010! Looking forward to a New Year!!!!

Hi everyone! I can't believe it is already the 13th of January. It has been almost a month since I last posted (as my father pointed out this evening). I hope you all had a wonderful Christmas and New Year's filled with lots of love and happiness. My holidays were great. Christmas was spent with my family. It was quiet, relaxing and more than anything just great to have us all together. My New Years was pretty much the same way, minus all the family. It was horrible weather that night (super icy) and Justin had to work, so it was just me and my son. We watched movies, hung out and then toasted in the New Year at midnight (with sparkling cider of course!)

So what's new? Not a whole lot. I made it past my 100 day mark, which gives me just a little less time at the hospital. :) I have gone from once a week blood work to every other week. So far my labs remain good. No CMV or EBV! My WBC count is still on the low end....sometimes at 3 sometimes at 4 (normal is 4-11). It appears to fluctuate but I hear that is pretty normal. The rest of my blood work looks pretty good though. Also, I had my first big outing since the transplant. My dad's side of the family gets together just after New Years every year for the Hagarty Family Christmas party, and there are a lot of Hagartys. LOL It was so great to see everyone....aunts, uncles, cousins....some of them I have not seen in years. It was a great first outing. It was the first time I left town since coming home and so it brought up a little bit of fear within myself as we started to head out of town, but I was fine. I was little worried about things like "What if someones sick that I don't know about, what if I have some kind of reaction or a problem, will the hospital there be able to deal with things?" Fortunately my fears subsided and I had a great time!

The biggest thing for me now is to have patience. That is by far the most difficult thing I think (plus I have never really been known for being a patient person). For the first time in a long time though, I can see a light at the end of the tunnel and with that come all sorts of emotions. That has been probably the biggest thing for me recently....all kinds of emotions. Hopeful, happy, sad, unsure, impatient. I'm sure I could go on and on. The other day I actually had a little bit of a melt down. Justin and I have been talking about saving up and doing something big to celebrate my one year anniversary of my transplant. As I look into the future and all the possibilities it occurred to me that I have no idea what I would even want to do with my life after MS (if you will....at least that's how I like to think of it, even though I know the MS is not really gone, but I can hope, right?) This is where the emotions happen....sometimes I get so excited about what my life can be, what I have to look forward to....then there are the worries and fears. All of the questions like, "When this is successful and I can go back to work, will I be able to find a job? Do I really want to go back to work in an area where I'm sitting in front of a computer all day, sitting at a desk? If I am healthy enough to go back to work and come off of Social Security (which would be ideal) what happens if in a few years my MS does come back?"

It's kind of like when I was first diagnosed. All of those questions you have, all the worries about the future. All of the uncertainty. Of course I will still worry about those things from time to time as I go through this process, that is probably a normal response, but hopefully I can focus on how lucky I am and all of the good things that have happened, how blessed I am and more than anything just be grateful for all that I do have. Fortunately I snapped out of it and realized that as much as I would like to, I have NO control over anything that happens. I have to always remember to have faith that everything is going to work out. After all this is a big part of what has gotten me this far. I am a bit of a control freak I have to admit but it's important to remember that no matter how much I try, things rarely go according to plan. Even with that, I always seem to manage and things are always okay. I don't know what the future holds and there is only so much of it that I can control (like following my doctor's orders, taking meds, etc.) Everything else is in God's hands!

As I go forward in 2010 I am hopeful that my immune system will get stronger, my MS will be in remission and that I can remember to just take things day by day. I am so happy that I have been given a second chance at life. What an amazing thing that is! My thoughts are with those people who are not doing so well, that you may have better days and my thoughts are especially with those who are taking a leap of faith and taking control of their MS by being a part of the HALT MS study. Rami & Wendy (who both are in the chemo/transplant process now) I wish you the very best. Good luck!

3 comments:

loveable_homebody said...

Such a nice post. I hope you go into remission too! It must be hard to know that your immune system isn't up to snuff. I imagine you have to take many precautions to try to avoid getting sick.

Does not being able to work really depress you? How do you pass the time?

Rami said...

Hi Jamie - nice to hear from you & glad things are going well. Hey could you put me in touch with Wendy? I don't know her. Don't forget my updates are under my SCCA carepage under "Ramis" - feel free to share the link with anyone. The updates are not as detailed as yours ...

Rami

Denver Refashionista said...

Yep, take it one day at a time. It makes the going manageable. Life itself is uncertain.


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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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