Sunday, September 16, 2012

Getting caught up in living life.

It's been quite some time since I last posted, this is mainly due to laziness. Although I haven't posted I have made a lot of changes concerning my care and life in general since my last post.

As for changes concerning my care: I am no longer doing chemo treatments every two weeks... in fact I'm not doing them at all. That's right it's been 10 months since my last treatment and my Bcell levels are still below 1% for the moment. I did the treatments at two week intervals for a period of 6 months at which point I just decided that I was tired of spending so much time in the chair taking treatment. I have also switched doctors and am now back at UTSW with a doctor that specializes in NMO. Trust me this was not an easy decision and neither was hitting the 6 month mark and turning the doctor down when he wanted me to have an infusion. I took a chance on finding a sort of "remission" almost a year and a half ago, and I'll never know if it worked if I keep getting chemo before anything happens. It's also been about 3 months since I've had any sort of daily medication. I made the decision to come off all my daily medications and I'm currently only taking antibiotics if I get an infection. So far it's working out well. I no longer have pain in my shoulder from the nerve sheath being removed during attacks and my leg spasms happen very rarely. Being off chemo I no longer have issues with insomnia so I was able to stop taking sleep aids. Other than fatigue, I'm currently exhibiting very little symptoms if any at all day-to-day.

As for life changes: I made the choice to go back to work and come off disability fully. This was probably the hardest challenge because I had to leave a great job due to my disease and I've discovered that coming back to the workplace after almost 2 years not working is difficult. Other things that have changed... I'm single and I switched mid-way through my transcription courses to medical coding. I have a couple more exams to take before I'll finish the medical coding courses and I hope to take my certification exam before the end of the year.

Overall things are good, I just had an appointment at UTSW and got awesome news. I had MRI's done 2 months ago and as of today they are unable to find the lesion on my brain stem and none of my lesions are active. In medical lingo that's a diagnosis of unremarkable.... sounds pretty freaking remarkable to me! :) I had the best neurological exam I've ever had to date. As it stands now, it looks like I'm all set to celebrate a year in "remission" in December. That's honestly something I never thought I would be able to say, so I can guarantee you it will be a fantastic day spent thanking God for how far I have come since May 1st, 2008. 

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