The sufferer conundrum.

I recently came across a blog written by a fellow MSer that could have easily been written about me. It was the condemnation of using the terms “MS sufferer.” I use these two terms together, at the frown of my fellow blogger, because I have my own reasons for using them. I consider myself a sufferer because, at this time, it's something I do suffer with, just like I have to suffer with annoying in-laws or noisy upstairs neighbors. It's the annoying pest that whistles in my ear while I go about my daily business and I suffer with it, because it's the hand I was dealt. One man's journey is another man's suffering.
It almost seems petty to attack something so silly as a term, or as it's put elsewhere, a label. It reminds me of those days in high school where we protested the labels we were given by society while others embraced it. Who cares? If I choose to consider myself a sufferer, that's my choice just as it's your choice to use a different phrase. Heck, I even call myself a PCOs sufferer, because, you would too if you've ever spent a half hour in front of the bathroom mirror plucking chin hairs with tweezers you can't even see.
Quite honestly, I picked the phrase up from a medical professional and it was just something that stuck. Instead of attacking the phrase, offer some other coined term we can use instead. Instead of picking apart labels, wouldn't it make more sense to present a united front? Remember, we're the source of available, real life information for the newly diagnosed.

My face is a volcano.

Or at least it looks that way. No, volcano is the wrong word, more like moon-faced. The small steroid pimples have begun to pop up all over, mostly in noticeable areas like above my lip (ugh) and around the corner creases of my mouth. I just spent a futile ten minutes scrubbing my face in a feeble attempt at trying to control my acne with a face wash. There's not much you can do when it's literally your body trying to rid itself of the toxins created by the medication. My face is a poster campaign for rejection.
I'm trying to decide, at the moment, what's worse. The acne or the hirsutism (facial hair) sweeping across my chin. I bet my body is loving feeding off the steroids so it can start new cultivations of hair colonies in abnormal places, like perhaps a patch right at the base of my spine or the fatty hump curving between my shoulder blades. It all has a sense of poetry to it, doesn't it? I should just be smart about it and just let it grow into a beard instead of spending the time to sit and pluck each hair. Then I'll fasten down my breasts and wear flannel. Hey, I bet it could really fly here. No need to even take testosterone, I make enough of it on my own.

And now I notice a grumpy bit.

So, given that I can't see, I can't really see what's happening to my body as a result of these meds. But, I still have the sense of touch and as I was feeling my face I discovered I now have the lovely little solu-medrol pimples popping up all along my hairline on my forehead. Lovely. As if I didn't feel bad enough about getting rounder and softer, now add in lovely pimples and faded vision. What's next? My period? Curse my tongue!

Is multiple sclerosis a treatable condition?

Is multiple sclerosis a treatable condition?

Taft said they didn't want to put me on this drug. I wish I could recall why. I hate doing the rebif injections because of the site reactions and the side effects. My hope is that once I get insurance out here I can locate a neurologist who would be willing to get me started on this drug.

Colorado Multiple Sclerosis Patient Reaps Benefits From Dahn Yoga

Colorado Multiple Sclerosis Patient Reaps Benefits From Dahn Yoga

This reminds me of a DVD I bought called heavyweight yoga that actually has a segment on it for people who are bedridden. Interesting.

Record keeping is so important.

I know that once I feel better I'm going to leave this blog as a side thought and proceed through life until I need it again. I've got to stop doing that. I need to make the most out of this blog as a way to keep track of things, such as: what sets off a replase, how am I feeling, is there anything important about the study of this disease I should share.
I originally started this blog with the hopes that it would be a way for those seeking information to find it. Thus far, I believe I've been rather unsuccessful. The primary focus of this blog has turned into a sounding board for my complaints about doctors, insurance, employers, etc. Which, in a way, can be helpful to those who want to understand the difficulties some of us face. But alas, readers, I feel in many ways I've abandoned what I initially set out to do, to be a source of information, to record everything that's important both personally and medically. So, from here on out, that's my main priority. I will attempt to write everyday, even on days where the sun is shining and I'm out living life. I think these are the most crucial of days to document anyway, to further show that there can be light at the end of the tunnel.
Now on to the good stuff. The prednisone is making me feel like my eyes are glassy and everything is a bit blurry. I can't recall if I've ever had this side effect before, so I'm willing to take comments from other MS sufferers out there who have experienced this or know someone who has. It's making seeing difficult overall because everything is just so darn blurry.
The good news is that earlier I experienced a wee bit of double vision, which means something is working. If I cover my right eye and attempt to peer out with my left I can almost make out the shape of my hand but I have yet to see any defined details.
I called around today and found out information about applying for state medical insurance as well as food stamps to help me out until I can look for a job. Jan, Chrissey's mom, is bringing me home the applications because said eye complications are getting in the way of seeing the app online.
At their insistance I've begun to take Vitamin D and Vitamin B12 daily in order to get the vitamins I need according to MS recommendations. I know the B12 is supposed to help in the healing process of the optical neuritis. I can't say either way because I've been on the solu-medrol and that usually complicates research.
I've put on about five pounds since this process began last Thursday, which for anyone who has been on solu-medrol this is a small miracle. Usually at this point I'm bloated, retaining water and all swollen. My pants feel slightly tighter than usual so I know I'm retaining some fluids. I'm also incredibly thirsty thanks to the heartburn the solu-medrol and prednisone makes me have. I think it's one of the reasons I slept so terribly last night, the heartburn just would not quit. At this point I know adjusting my diet won't do anything for it so I just have to suffer until my body adjusts.
My mood is better today. Yesterday I had a bit of roid rage followed by a complete breakdown of tears and sobbing. I hate to get to that point but it was an overall emotionally draining day and I know, again, the meds don't help. In the end, it all worked out like Chrissey said it would and now I've got my oral meds and I'm a happy young woman. Each day is another step towards recovery.
Since this flare-up hit me so suddenly as I arrived, I really haven't had the chance to reflect on my life back in Syracuse or even had the chance to explore my new surroundings. I have to investigate how I feel about leaving my husband and my old life behind, but I think that can wait. I have the feeling it's going to be a difficult situation to think about but I'm not blind (haha) to the fact that I know I made the right decision. I'm craving the chance to get out and really see things. I've been taking brief trips with Chrissey when we have the opportunity and being so blind I just feel like I'm missing everything. I'm excited to get to the point where I will be able to drive again. I think that's the part that makes me the most miserable, the not being able to drive bit. I love to drive, it's where I go to think and get away and right now I'm getting some serious cabin fever.
All in all, despite everything, today is turning out to be a good day. Even when you're sick you're entitled to those moments where everything is calm and at peace. I like that.

Sometimes being a gnat in one's ear really pays off.

I hated that I let me emotions take control of my situation earlier. I try to be a bit more reserved with them, especially over the phone, but the whole situation was even to much for me to handle.
There's one thing I've learned about life while having this disease. No one else will ever be your advocate, you have to fulfill that role. So, I annoyed them and I called and I left messages and I left messages with other companies and I even called the answering service. That's what did the trick.
I have my meds.. and I'm happy. I can take it in the morning and not be up all night like I more than likely will be tonight. So, things worked out in the end. I spilt a little anger, shed a few tears but I'll just blame that on the steroids and not me feeling sorry for myself. Problem solved.