Monday, November 28, 2011

Yay for fat!

I have now been doing my treatments for 17 days. That is 17 pokes with a needle. 17 "oh nuts!! Here we go again"s. 17 times of saying "THIS SUCKS!!". It's gotten old already. I'm tired of it. Here is the beginning of a blog entry I started a few days ago:
Tonight will be my third night of treatments.  I'm really not looking forward to it.  Ok, I'm flat out dreading it.  Every time I do it, it makes me more anxious about doing it again.  This sucks.  I can tell my my inner four year old wants to make an appearance and throw a tantrum.  <sigh>
Cory interrupted at that point and said it was time to do the treatment.  I didn't get around to finishing the entry. This blog thing is kind of difficult. It's actually quite a challenge for me to just put my true thoughts and feelings out for the entire world to see. I feel kinda naked! I don't want to be pitied or judged. I really don't want you to feel sorry for me. The two things that have been a blessing from God through this are 1) my support network of friends and family and 2) a sense of humor. Without both of those I would be most certainly in a world of despair. So, I'm alright. Not loving it by any means, but enduring it as best we can together and with a smile, however crazy that smile may look.
Now, about the treatments...I can't help but roll my eyes when I think of it. Who's brilliant idea was this?! I mean really! This is 2011 and still the most effective MS treatment is a daily punishment? Are you kidding me? There is an oral pill on the market but that's kind of a "coming out with your bazookas blazing" sort of treatment. The side affects are pretty crazy and definitely not worth the risk. I'm at the "peering around the corner with the pellet gun" stage. Hopefully we never need the heavy artillery.
Before starting these treatments I held onto the hope that I was getting all worked up for nothing and I'd look back and chuckle about my first few times doing it. Noooo. I do chuckle a little, but it's more because I was a bit naive and overly hopeful. This really does suck. It sucked then and it still sucks now, 16 days later. Booooo! I think if anything, it's harder for me now to muster up the courage to do it because now I really know what to expect and I can see that this isn't getting any better. Craaaaaap! I am so completely sick and tired of pulling on my big girl pants! They're worn out!
Here is my routine: I lay out all my fixins'.

Then I sit there grumbling and glaring at it for a little while. Finally, I suck it up and get it over with. I hate that I do this eeeveeeryyy single day. I hate that I have to do this to my body. I hate that I hate it. It's really not the actual injecting that I hate. It's the after effects. I'll get to that in a minute. 
After I do the injection I mark the injection site on my little chart thing like this:
 About 30 seconds after the injection, THIS happens:
No, not getting random glitter on my skin. The blob of "ugh!!" next to the circle. Yeah, that's normal according to the drug company. I'm sorry but I disagree. And that's just the beginning too! About a minute after the injection, it stings like any old shot you've had at the doctor's office. Then, the liquid fire under the skin kicks in and makes me want to chew my arm off. It swells up and looks like I'm smuggling some sort of small creature under my skin. It's weird and gross and painful. I do not have enough excess skin for this type of malarky to take place, ok? It usually swells to about the size of a golf ball, but doesn't protrude from the skin quite that far. It's really just under the skin and super sensitive and tough in that area. It's like a nasty bruise under the skin. Oh, and it emits heat too. Lovely. You don't realize how often things come into contact with your arms and legs until you start giving yourself injections that take a day or longer to recover from. The arms are the absolute worst. It's administerd towards the back of the top part of the arm in the fatty area. Well, when you put a golf ball under the skin up there, it's pretty uncomfortable to move the arms around. The stomach is the best place. It still swells up a bit, but not nearly as bad. I never dreamed I'd be thankful for a little extra flubber around the midsection. On stomach day I think "yay for fat!" to myself. Weirdo. Hmph how odd that we can come to appreciate certain funkier sides of ourselves when they're put to a better use. I'd certainly love to lose a little weight, but dear Lord, I am so glad I've got a little extra to go around right now. So, this year I am even more thankful for all the food I've consumed. I'm grateful for every pizza, donut, and cookie that lingers on my tummy. Yay for fat!

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.