Mike Has MS
Saturday, June 14, 2008
Seeing Kraig
PICT7617.JPG
Originally uploaded by mikehillwig
I few months ago, I met a gay couple at the MS Walk. Kraig and I hit it off pretty well. It’s not often you meet another gay guy your own age who has MS. Kraig was walking with the group from Beth Israel Deacones Medical Center (where I had my surgery) today, and they were right in front of us in the parade. It was so good to see him.
Multiple Sclerosis • Boston • So Gay It Hurts • (0) Comments • Permalink
Sunday, May 18, 2008
MS Days
Today is one of those days that I can only describe as an “MS Day.”
Reggie woke me up at six, and we did the potty/kibble thing before going back to bed. Then I was up about 10:00 feeling tired. After a simple walk around the block for Reggie to poop, I’m feeling completely wiped out like I need to take a nap.
I worked hard in the yard this weekend, maybe a bit too hard. Perhaps now I’m paying for that.
Saturday, April 12, 2008
Thank You
For those of you who have sponsored me for the MS Walk, thank you. Between my friends, family, coworkers, and blog readers, I have raised about $3100 for this year’s walk, putting me more than $100 over my $3000 goal.
As of tonight, the night before the walk, I am the #10 individual fundraiser for the Boston walk, and that makes me feel pretty damn good.
If you’d still like to sponsor me, please do. You can do so here.
Tuesday, March 18, 2008
Pre-Op
Not being from Boston, I didn’t realize that Beth Israel used to be a pretty bad hospital. My first experience with them was when I started seeing a primary care doctor at Fenway Community Health. What I love about the BIDMC system is that all of my doctors have access to the same information. My surgeon was able to see the notes of my visit with the neurologist. The neurologist was able to see the results of my visit with the optometrist. This is all really cool stuff.
Until today.
Today was my pre-surgery interview with a nurse in the anesthesiology group (who never gave me her name, just “one of the nurses") and she had no clue of my medical history nor medications. One of the things that every doctor has done is gone over my list of medications to ensure that it’s absolutely current, including the vitamins I take. My neurologist (who I absolutely adore) tells me that it’s a big push for the hospital to ensure that every patient’s list of medications is current. So when “one of the nurses” is doing the pre-op interview, not only did she ask what medications I was taking and what special needs I had, she was totally missing out on a valuable resource that was probably right at her fingertips. Now I understand the need for her to ask what medication I’m on, but wouldn’t it have been easier for her to ask if I was still taking Strattera 25mg twice a day and 44mcg of Rebif three times a week instead of asking me to list all of the medications I currently take? She was surprised when I told her that I had multiple sclerosis. What? It’s been part of every discussion with every doctor at every visit. Even a cursory look at my medical records should have indicated that to her.
I’ve really had a great experience with BIDMC and I’m hoping this one situation doesn’t drag down my opinion of the entire system.
Tuesday, February 19, 2008
MS Walk 2008
If you haven’t sponsored me for the MS Walk yet, you can do so here.
Monday, January 14, 2008
2008 MS Walk
I’m registered to walk for the 2008 MS Walk. You can sponsor me by clicking here.
Friday, December 07, 2007
Deferred
I attempted to give blood this morning. Now that I’m no longer on my MS meds, we thought I might be able to give. Nope. I’m still permanently deferred by the MGH Blood Bank.
Thursday, October 18, 2007
Relapse
Have I mentioned lately that my boss is a really good guy? I went into him this morning and told him that I was having some health issues. My MS is acting up again. It’s the change in the seasons, I swear. His first question was “Do you need to work from home for a while?” I told him that I have a lot of work to do, and that the work will get done.
When I get like this, my sleep patterns get all messed up because I get tired and want to nap during the day. We agreed that I’m going to cut my hours physically in the office a little short for a while. I’ll still work, but I’ll probably come in a little later and leave a little earlier.
As far as the mechanics of what’s going on, it’s numbness, loss of balance, and being tired all the time. These are classic signs of a relapse, at least in my own case. Hopefully this won’t last too long. I have a life to live. The good news is that having Reggie forces me to stay active. We probably walk a good mile every day. That forces me to get at least a little bit of exercise.
Monday, September 24, 2007
Was it the MS?
It was about this time five years ago that I first started noticing the symptoms that would lead to my diagnosis of having MS.
My neurologist in Pittsburgh was good. My neurologist here in Boston is better. The neurologist in Pittsburgh assumed that I had relapsing-remitting MS. That’s perfectly reasonable. For four years, I thought that I was having ups and downs in my MS. My new neurologist told me that my profile was more like transitional-progressive MS. It means my symptoms won’t come and go. Instead my symptoms can be expected to be progressive instead of up and down.
It makes me wonder if all of the ups and downs I’ve faced over the past few years really were the MS or if it was something else. I can’t exclude that it could have been in my head.
Now I’m trying to do some research on TP MS. It’s really rare to find any references to it other than things that are cursory.
Friday, September 21, 2007
Return Call
My neurologist just called me. That’s right, she called at 8:00 PM on a Friday night. She was just returning my call from earlier today.
My bloodwork is back. The good news is that my vitamin B12 levels are higher than before, although slightly low. Normal is 240-900, and mine was 230. She says we should monitor it and not start replacement therapy. She also cleared me to stop taking my Rebif.
For the first time in four years, I’m on no injection therapies. None.
This is a happy day for me.