Wednesday, June 20, 2012

Thank You for the Words, my Big Brother

My brother lives on the other side of the country from me and so we see each other rarely. With my disability our visits are limited to when he can come here; and with a young family, working organic farm, and resulting stretched-thin budget, that only happens once, maybe twice a year. We try to catch up on the phone, but as was the case with his recent haying season and my 6-week fight with a nasty exacerbation it can be so hard to make our schedules and our lives mesh. Too often when we finally catch each other on the phone something is cooking at his place or I am too tired for us to have a good connection. But, when we do, he so often can drill through the layers of stuff that seem to hold me like a cocoon and open my eyes to just what is at the heart of me. So thank you big bro' for finally giving me the words to return to my too long silent blog. I sure do love you! (and happy 50th too)
Two things, one big and in my face, the other silent and wrapping like fog around the edges of my thoughts, have coalesced into an almost deliberate need to not think about my MS. Maybe if I just don't think about it, it won't be real. Next year is my morbid 10-year, do I call it an anniversary? I see it more like a giant clock that is set to begin ticking. 38 plus 10 is 48, even in theoretical physics, I believe. And that is the first year, in the range of years that I have to live. I thought I was fairly ok with the the whole, 'you can expect 10-15 years,' told to me by two different neurologists over the past nine years. But now that the first year of that range is on the horizon, I am speechless.
Last week I had an allergic reaction to methylprednisolone. This is the go to drug and the only drug that combats exacerbations. Follow ups with an allergists were mixed and I have a yellow light to try again in a hospital setting. But, odds are high that I will no longer be able to to take this medication at the dosages required for efficacy. This means that when I have relapses and lose functions I won't have any medical recourse to regain them. Last December when I went into the hospital I couldn't hold up my head or sit up. After a week on the steroid, my head was stable and over the next few weeks I regained 85% of my trunk stabilizing muscles. Without steroids, it is likely this wouldn't have happened.
Now I hear the tick, tick, tick of that 10-year clock getting louder and the biggest weapon in my arsenal is either off the table of greatly weakened. I have no words to express how this feels. 
It was my brother who connected the two. Made me see that by pretending nothing was wrong I could hold off the fear and tears, but at too high a cost. I didn't buy him a gift for his birthday, but he certainly gave me one. Thank you, Mark. 


Jill said...

Glad you are writing again. I have missed your posts. Jill

Jill said...

Glad you are writing again. I have missed your blog. Jill

Anonymous said...

Hi Janine, just found your blog and just wanted you to know I really connected with your "diagnosis story", so much so, that I actually shared it on my blog with a link back to yours. I have PPMS and can relate to so many of the things you have shared. I pray you are handling things okay at the moment and you are feeling the Lord's presence and peace.