Saturday, November 5, 2011

Polishing a turd

On September 13, 2010 I started my day with a feeling of accomplishment. The four previous months had been rough. I was still recovering from what we were told was a stroke. It was also my birthday and a huge milestone for me considering the stroke business. I went to work that morning and was delighted with the cupcake and balloons from my coworkers. It was going to be a great day!

Around 10 that morning, the first thing that worried me was how incredibly hot I was all of a sudden. Hot to the point I swear my hair was sweating. I was disoriented and sort of...detached feeling. I don't know quite how to describe the feeling exactly other than I felt seriously out of sorts and unsteady. I left work and went home to lay down, hoping that would help. It didn't. Cory rushed home and we went to my neurologist's office. (I had been under his care since the "stroke".) He checked me out and was unconcerned and said sometimes people experience aftershocks when they've had brain events. Cory and I were scared to death and insisted on having an MRI. He agreed and said he'd call us that evening with the results if it was another stroke, but he was confident it wasn't so don't worry.  Riiiight.

That was a very anxious evening. We tried not to worry about it and finally breathed a sigh of relief when we hadn't heard from him by 10. No news is good news, right? He called the next morning and said it definitely wasn't a stroke but they need to schedule me for some tests. The MRI revealed 5 lesions in different areas of my brain which usually points to Multiple Sclerosis. Excuse me? This would be the beginning of our new vocabulary.

I had a spinal tap shortly after that. I'll do anything to not have to go through that again. Just the thought of having another one makes me want to cry/vomit/kick/punch/scream and did I mention cry? The procedure itself was fine and painless. I laid down the entire day as I was told, but the next 3 days I endured the most excruciating headache I've ever had. Sitting down put pressure on my spinal cord and that in turn made my head feel like it was being squeezed. I've suffered from migraines for over 10 years and this was way worse than that. I've heard this is not common and that most people do just fine afterwards. Whatever.
The spinal tap was testing to see if there are any oligoconal bands (O-bands) present in my cerebrospinal fluid (CSF). There were 6. Anything over 4 or 5 is considered clinically positive for MS. The number of O-bands doesn't have any relationship to the severity of the disease though.

So now, fast forward a year and here we are. I'll get to the important stuff in between, but that's the main chapter of the beginning of my MS story.

I talked to the Copaxone folks last week and they are doing the legwork to get me all squared away on the treatments. They call it therapy. Whatever.

The drug company has a support system called Shared Solutions that has really helped a lot. They're the ones coordinating the show, which is a blessing. I know it's in Copaxone's financial interest for me to have this go as smooth as possible, and I'm fine with that. If you have ever tried to orchestrate your own medical care you now it can be a nightmare.

They sent me my auto injector last week.  They told me I could just put it aside until I have my training on how to give myself the treatments.  I managed to wait a few days before tearing open the package like it was Christmas morning.  I don't know what I expected, but I was sorely disappointed when I saw the device.  My first instinct was to toss it away from me.  I know I made a disgusted face at it.  It's very intimidating to me and I don't like it.  I don't want anything to do with that .... thing

I have lunch every Tuesday with my Dad and I was telling him about this wretched device.  I was lamenting the fact that I just really don't like it.  It's bulky, daunting, and ugly.  He suggested I decorate it to my own liking; put some sparkles and ribbons or something on it.  I love this!  This is the ultimate polishing the turd!  You may be rolling your eyes that this is really trivial and I do recognize that the device itself should not be judged on it's looks, but on it's function.  But I don't care.  I know it's really the procedure I'm dreading and not the device itself but I do declare I will add a touch of whimsy and sparkle do my daily injection.

So after coming to the realization that this doesn't have to be an ugly, dreadful thing, we took it a step further and went on to discuss that I don't have to view this disease as an ugly, dreadful thing either.  It's part of who I am now and I will try to make peace with it and go with the flow.  I am confident my good days will far outnumber the bad, but if the bad days do come, I'm hopeful we'll be able to polish that turd too.

1 comment:

  1. I'm so proud of you, Sarah. This is great. The writing is good, too. :)

    I'm sure I'm not the only one wanting to see the "polished" auto injector.