Wednesday, September 18, 2013

Results and Other Things

It's been a little over a month since I last posted. You'll have to forgive me for that. Blogging isn't all that high on my priority list. I've mentioned before that I have a limited amount of energy, and things other than writing a post take precedence when it comes to rationing it.

Still, I should update/note a few things. One of the primary purposes of this blog was to document stuff (I'm supposed to keep a journal - we all see how good I am about it), so let's get to documenting.

Today ends my 9th week of Tecfidera. Tomorrow September 19th is the start of my 10th week of treatment. There's been some issues with the pharmacy in getting my medication (I won't detail the fiasco, but it had to do with two mail-order pharmacies merging and neither company knowing what was going on, blah blah blah, long story, suffice to say I got my medication with one dose remaining before I ran out. For those who haven't read the previous posts, this was a terrifying prospect, as I really didn't want to have to stop taking this medication and restart it again. The first few weeks were a nightmare.) but that's been sorted now, and hopefully no more things will get screwed up.

I did get my MRI results. This was a depressing day for me, as it showed one new lesion. It's small, and my neurologist doesn't believe it's responsible for any of my symptoms because of its location, but still. I took the news pretty hard, because for me it's like failing a test or something. I got a bad grade, so to speak. Granted, it's not as bad as it could have been (and it's so not my fault, because it's not like there's anything I could have done about it), but still. It's not reasonable or rational, I know, but it was still kind of a blow. My last two MRIs have been stable, so I was kind of hoping for the same result this time.

But, given that, it wasn't really anything I didn't already know. I mean, I'd been having symptoms over the past year and I knew my condition was worsening (that's what "degenerative" means - this illness is going to get worse), but still. Even knowing all that didn't make the news any easier to hear. I admit to having a minor meltdown in which I sat on my back deck in the moonlight (and it was a gorgeous night) with a pack of illicit cigarettes (I don't smoke - never have, really, but my Dad did, and he's been gone a long time, so it was kind of a comfort thing). I just sat there, with lit cigarette after lit cigarette (I had a friend buy me a pack. He looked at me funny but didn't question me.), enjoying the cool summer's night and communing with the spirit of my Dad. He was always my go-to when things upset me, and I was more than a little upset. My husband wasn't home when I got the news (and wouldn't be until late), and I just needed something to take the edge off that wasn't a little white pill.

It worked. I had my little moment to process and cope and that was the end of it. Husband came home and we talked and commiserated and I took a shower (we both hate the smell of cigarette smoke) and carried on.

Because that's what I do.

Speaking of carrying on, as this post says, I have carried on with my Tecfidera. I haven't had any more bad side effects (knock wood)  since that last night. I've learned to take my medication and how to keep things at a minimum. I've been able to cut WAY back on how much I need to eat, and that makes me happy. I'm hoping to get back to my local therapy pool next week, but we'll have to see.

I have to say, now that the major side effects of the treatment are over, I feel a hell of a lot better. I have more energy, I'm sleeping less (2-4 hour intervals instead of 5-8), I don't get as fatigued. There are lots of pluses. My balance is better.

The right side of my neck is numb, though. It has been for awhile, and I just chalk it up to my illness doing its thing. It's getting slowly better (diminishing in size - it was all the way from the base of the skull down my neck to my shoulder and arm. Now it's just a little area, so things are getting better). It's noticeable, but random parts of my body go numb off and on on a regular basis, so I'm not too worried. It happens.

My diet is shot to hell with this new medication. I'm getting back on it. I don't even want to know how much I weigh. I feel huge, but my pants still fit, so I don't think I've put on that much weight. I'll step on the scale tomorrow and see what's what. My vitamins too are all fucked up. I'm getting back to taking those again, but I keep missing them. I use this app on my iPad called Pillboxie ($0.99 - worth every penny) that's extremely helpful, but it only helps if you actually take the pills when the alarm sounds. And I kind of don't. So it's not the app's fault. It's totally me.

Sorry I don't have anything encouraging or inspirational to share with you today. I did have a link to an awesome chick who is climbing Mt. Kilimanjaro for the second time to raise $50,000 for the MS Society of Canada, but the website is fucked up, so just take my word for it. Her goal was to raise a million dollars over something like 5 years, and she should be reaching that goal soon.

With all these people fundraising and all the research going on, I'm inclined to believe we'll cure this shit in my lifetime. This January I'll have been officially living with MS for nine years. Ten, really, if you count the year I spent being diagnosed/having weird symptoms. My mother thinks I've been living with it a lot longer, just undiagnosed, but she's my mother, so...yeah.

That is one thing I'll say, people with MS. It's easy to blame Everything You Feel on your illness, but don't do that. It's the first thing we think about when something new happens - "oh, it's just my MS." It might not be. Pay attention to things and discuss them with your doctor(s). By the same token, MS isn't responsible for everything. Particularly irritable? Maybe you're just in a bad mood. Crying? Well, are you really upset about something? Why?

Just because you have MS doesn't give you a free pass to be a whiny-assed jerk. Don't let your illness be who you are.

Be who you are - a person WITH an illness.

How's that for hope and inspiration?

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I don't want any advice, "try this/have you tried," or any medical opinions. Anything else, feel free to comment!