Friday, December 12, 2008

Blind on the Short Bus

Doesn't the title of this post sound like a country song? Feel free to use it if you're ever composing something that fits. I'm generous that way and I've always wanted to show up in someone's liner notes.

According to my new neuro-ophthalmologist I am certifiably visually impaired. I have a signed form that qualifies me for the MBTA Ride--think short bus for grown-ups. Yup, I'll be on the short bus with all the little old ladies going to Walmart and the people in wheelchairs going to soon as the Commonwealth of Massachusetts processes and approves my application. Knowing my wonderful state government, that will not be a speedy process.

I was becoming a danger behind the wheel--convincing myself that I could see well enough to go to the store when we needed milk, etc. So, I decided to talk to the neuro-opthalmologist and take myself off the rode if he agreed. It's better than having the Registry of Motor Vehicles make the decision for me. Or worse.

I wouldn't want to be crossing the road with my children with someone with my eyesight behind the wheel. I'm relieved and I'm sad.

Tuesday, December 02, 2008

Monthly Infusion #1

I wrote this on 12/2 and forgot to post it. Woops! I guess that's a good indicator of how I've been. Scattered and sleepy. My December insomnia has kicked in full force which triggers all my MS symptoms. I've dropped a full gallon of milk, many cups of coffee, and I keep feeling like my hands and feet are asleep. I've turned the tides, though, and slept 7 hours in a row last night!

Today was the first of my monthly Solumedrol infusions at the new MS clinic. The best part was that they had wireless so I was able to answer work email and play a little Wordscraper during the infusion. Ok. The Wordscraper part was fun. The work

My nurse was Debra (that's her headshot from the Website but she is much more animated in person). She was very nice and knew her way around an IV. Good thing, too, since I only let them screw up once. I learned how to set that boundary when I became a pin cushion during my 5 1/2 week stay at the Villa de New England Medical Center when I was waiting for Zane to be born.

But I digress. It was really nice to know that all the other people in the room had MS. Well, sort of. It wasn't that fun seeing the people in wheelchairs and with canes, wondering if they were once mobile like me. Just for today, though, I walked in on my own power and was only infused with the steroid medication and not the controversial Tysabri (MS drug linked to fatal brain infections) or any other meds with heavy-duty side effects.

Not that Solumedrol doesn't have its own list of side effects but, as far as I know it hasn't killed anyone. For me, I sometimes get a headache, a metallic taste in my mouth, increased body temp, and a surge of energy. The drug literature includes a really scary list of additional side effects like hair and bone loss but so far, so good, for me. (Although hair loss wouldn't be awful if I could concentrate it on certain body areas.)

But I'm done and don't have to go back until after Christmas.