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Tuesday, July 28, 2009

No rest for the wicked

My trip was great so I didn't wallow until I got home. I'm proud to say that I only spent one day really feeling sorry for myself and doing little then after a really good cry, I decided to get on with my life. I figured, "There is no rest for the wicked" so I might as well get on with my life. I still am not feeling like my spirited self but two days in a row, I have forced myself out of bed and started doing the things I need to do before school starts.

Yesterday I read all your helpful comments on DMDs. I am leaning toward Copaxone so I read through their whole website and then called Shared Solutions to get my name into their system and to get the process rolling. I wasn't sure how things worked so now I know next steps for getting started with Copaxone or another DMD. I guess I just need to let my neurologist and my insurance know which I choose and then they will direct me from there. The Shared Solutions people were very nice and helpful. I actually talked to four different people and there was no wait time. Now that's good service...

I discussed the whole MRI/DMD situation with my mom and I told her I had already done just about everything holistic that I could think of. The only thing I have not done is genetic testing for allergies to gluten, dairy and soy. My mom just learned she is intolerant to gluten. We both decided that my next step before starting on a med was to get the genetic testing done. I talked to my acupuncturist and he helped me order the tests. I am also going to his office to get an "IGA and IGG" test done that we can send in. Once the data comes in, we can look at the tests together and see if there are other things I can do with diet to help control my disease. All this said, I don't think gluten intolerance causes lesions so I am still getting myself prepared for a DMD.

I start work on August 10th and I'm gearing up for that as well. I am anticipating a bit of a stressful start so I'm going in tomorrow to at least see what to expect for this upcoming year. Yesterday, the ESL coach position in my school opened up so I applied but I really won't know if that is my future for a little while so in the meantime, I want to be proactive in my current role. I have realized that without a coach, this may be tough so even if I don't get the job itself, I will essentially have to do that work until someone is hired. My fingers are crossed that since I know the work, I will be the logical choice for the job. Either way, I don't think I will start the meds until sometime in September. There is part of me that wants to skip it but as just about everyone has pointed out, "You don't want to wait ten years and wonder if there is more you could have done to prevent deterioration." I am still scared about both the injections and the side-effects but I'm coming to terms with my fear.

Today I am grateful to have a plan of attack for my future.

6 comments:

Jen said...

Good! It's gonna be okay. And I think you'll get to a point where MS won't be as heavily in your thoughts. Just a quieter companion...Disease onset before the age of 40 is (ironically) a better lot for disease course (usually.) And you're a woman, which helps the odds.

Denver Refashionista said...

Thanks Jen.

Mike said...

Jen said it nicely. Just try to keep a positive outlook and remember there are of plenty of us you can sound off to. We don't judge, just listen. Oh, and we are not the least bit shy about speaking our minds either!

Chin up girl. It's never as bad as we think.

Mike

Denver Refashionista said...

Thanks Mike. I think it will be alright. At least I have a game plan now.

Merelyme said...

wow! this is big news Nadja! I am very curious to see how this goes for you. I need to catch up reading your posts to see how you have been doing these past months.

You are absolutely one of my favorite bloggers and I feel sad that I haven't been able to visit your blog in so long. Hope you forgive me.

Denver Refashionista said...

Good to see you Merely. Don't worry about missing the reading. Thanks so much for the compliment, I'm blushing...