Gilenya

Because I recently moved to a new state I’m now in the process of finding my new doctors and getting my medical stuff established. And all the appointments just happened to fall within two days.

When you have a chronic disease like Multiple Sclerosis there are just days when you have to question “Why me?” and wonder what lesson there is to learn from having to put up with a body that at best gets you through your days (with many modifications) and at worst finds you sitting in a chair hoping tomorrow will be better.

Now don’t get me wrong. I’m really not a complainer. I believe I have two choices when I get up in the morning; 1) cry about my disability, but that doesn’t get me anything but puffy eyes and a red face and neither look good on me or 2) be grateful for everything I can still do. Most days I choose option 2. (Because everyone deserves to have a short pity party now and again.) I’ve had this disease for 25 years and thank God and knock on wood, I’m still on my feet. It’s not pretty, but I’m still mobile. Which really brings me to the point of this blog.

I’m considering two new medications, Ampyra and Gilenya both of which are fairly new to the MS world and both are supposedly helpful for progressive MS. I haven’t been on medications for a long time because the side effects really were dibilitating and my quality of life was horrible. But anyway, I digress…

What I really wanted to mention in the middle of all this medical jargon, is the people I had the privilege of meeting. My first appointment had me at the opthamologist. The moment I walked into the office there was a positive energy just snapping through the air. The ladies behind the desk were smiling and friendly and an absolute joy to talk with. You could just tell they loved their job. And the doc … well, his caring smile and pleasant manner were infectious. And I told them all that. I’ve been in a lot of doctor’s offices over the years, but I would love to have just sat in the waiting room with a cup of tea and chatted and visited with them for the morning, they were that wonderful.

And of course I started chatting about the new medications for my MS. which brought a couple of people drifting into the office. Turns out one of the ladies has a sister-in-law my age who’s MS has progressed to he point of being bed-ridden. She is just heartsick. We talked quite awhile about the hardship of being a family member to an MS patient. I often think it’s harder because they want so desperately to do something for the person they love…and there’s nothing they can do except love them.

I followed that up with a trip to the hospital for some very benign tests. The lady who conducted my ECG asked me about the book I was reading, one of Jessica Andersen’s Nightkeeper series. Which then got into a discussion of genres and of course I told her I was an author. Pulled out a bookmark and gave it to her. Next thing I knew 5 people were standing in the doorway after my test wanting to meet the author (who I assured them is faaaaar from famous) and asking about my mother-approved-stripper-pen name. (If you haven’t heard that story, ask me some time, it’s pretty funny.) Anyway, it was fun to chat with them all.

Then off to the lab to have FIVE vials of blood drawn! (And not a sexy vampire around.) It turns out the young lady coaxing blood from tiny, spaghetti veins has a sister with MS. A nurse in the hospital upstairs and she tried some medications, but refuses to continue, guess why … the side effects. This young lady was sad and worried. We talked for a good 15 or 20 minutes about MS and medications and her sister’s decisions. It was wonderful to offer my perspective.

So I don’t know. I sometimes wonder if that’s my mission in life…to offer support and encouragement to both people living with MS and family members who are worried and afraid. As a teacher at heart it’s so easy for me to share/educate/listen. In this crazy world of chronic disease, I’d like to think there’s a reason I’m going through all of this. Maybe my next career will be as a motivational speaker. Who knows? I’m game.

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