The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Monday, August 24, 2009

I have a friend with two kids. She sometimes gets in a pinch and needs a babysitter, so I have offered to help her out as I can. Recently, she asked two people in front of me, but never me, if they could help her out on a day. Also, she never really responded to the e-mail I sent her letting her know I could help--not even a simple "Thanks. I'll keep you in mind."

Then it dawned on me--does she think I am incapable because I have MS? I don't want to jump to conclusions, but I can't help but wonder.

Sunday, August 16, 2009

So, this week was a bit better physically. I wasn't as completely drained and exhausted as last week, which is good. Emotionally, it was a bit trying, but that was mostly non-MS related.

As I think about it, part of it is related to MS, I suppose. B and I want to start a family. We have had to plan, in advance, due to the various MS medicines I have been on. By the time it is time to start trying, something else comes up putting plans on hold. It does make us wonder how the next time will work--going off of medicine, waiting for my body to be med free, then trying. We'll see. So, the emotionally difficult part was that my friend had her baby this week. I rejoice with them. Seriously, I am so, so happy for them. But my heart hurts, too. Both Brad and I feel a tinge of sadness.

Something strange happened on Wednesday, proving I am a doofus. I took my steroid pills (it was a four-steroid-pill day) before going out to dinner with B. When I was going to bed, around 10:45, I realized that the pills on my nightstand were not my steroids; they were my Baclofen (for muscle spasms). At that point, I had already taken my pills for the night, including the Baclofen as prescribed. However, apparently I had also taken 4 Baclofen around 3:30. Since it had been almost 8 hours, I figured I was fine--I wasn't going to die. My key concern was a sudden spike in dosage and then a sudden drop the next day, as you tend to slowly increase/decrease dosages. I called the nurse and let her know what happened, and she said, "You weren't wobbly? A noodle?" Um, no. I mean, I may have been a bit unsteady after dinner but I thought that was from sitting a long time, dim lights, and a really good lemon drop martini. It was nothing that raised a red flag.

Thankfully, it wasn't as scary as it could have been. Had I taken 4 Ativan (an anti-anxiety medication) at once, that could have been bad, particularly with alcohol. I feel like the grandma that people worry about, confusing her medicines, etc. It was a mistake though--an honest mistake--that I won't make again!

This is my last week of steroid pills, thankfully. I am tired of being hot, even when my arms and legs are freezing, I feel like I am on fire. I wake up all wet with sweat, and I am not a person who sweats much if at all! I haven't been sleeping quite as much, but that's because of the semi-insomnia steroids can cause. Thankfully, that has been kept to a minimum this round. As a result of the steroids, I may be slightly less numb in my hands. My eyes don't hurt as much as they did in the beginning, but they are not as pain-free as they were mid-course of IV steroids. Some other things--it's too early to tell.

Can I say, though, that I am sad I didn't get to skip my period this time? I know that's TMI, but often, I missed my period altogether when on steroids. It's probably better this way, as I only have on every three months as it is. But still...I was hoping. Dealing with a flare, steroids, and a little should-be-monthly visitor isn't my idea of a good time.

Saturday, August 08, 2009

I am exhausted. And it's one of those cases where I am too tired to really do anything, but that makes me feel blue, because it makes me bored. I am not happy just sitting on the couch watching movies. I wish I could have people come over, keep my company, play games, etc., without me having to go anywhere to entertain myself. It's a picky request, I guess, but a girl can dream.

I was drying my hair, and my arms felt too tired and too weak to raise up to my head. My hands were too numb and weak to hold the round brush. I did it, though I did not do it well. It took everything I had. Something that simple should not be so difficult.

I think this is one way MS can lead to depression. First of all, MS is three times more likely in people *before* diagnosis. So, there is something going on up in the old brain that makes it more prevalent. Then, being too tired to do anything and feeling utterly drained--it takes a toll emotionally. And so I whine.

I really don't capture the "day to day" of life with MS, because on those days, it's just life. Nothing is different (except these days, I will have a shot as a reminder that yes--I still do have "it.") But these days, it feels all-too-consuming. Not feeling my hands or feeling like they are burned/blistered/lacking feeling is a pain in the butt. Feeling dizzy for whatever reason cramps my style. Having my legs feel shaky takes even more energy to do basic things. So, I know I don't write of the day to day stuff because I can live in oblivion at that point. Then, MS comes and kicks me in the ass; it makes it easy to go into pity party mode. For that, I apologize.

We're headed out for a bit--maybe run to Hobby Lobby, get a redbox movie, etc. We'll see how I am feeling once I accomplish all of that.

Friday, August 07, 2009

The good news is I didn't wake up feeling like I was having a heart attack this morning. Seriously--it's a rather unsettling feeling, regardless of the cause.

The bad news is that I woke up hurting all over. I was so tense--in my neck, shoulders, head, joints. Who knows what *that's* all about, or if it's related to anything at all. I also had some bizarro dream which was altogether disturbing. So, I woke up around 7:30.

7:30 is not that bad. One time, when I was on IV steroids, I woke up at around 4:30. That's just wrong. 7:30 isn't my ideal, but I can manage. And who knows--maybe I will actually get something done, today. (yeah right!)

I do not feel my hand getting any less numb...yet. My eye pain may have gotten a little worse, since it got better. It's not as bad as it was, initially, but there still is discomfort. I still have 17 days of steroid pills to take, so I am sure some of this could get better with that.

On a whiny note, can I just say how much it sucks to fall asleep on the couch, ready to go up to bed, only to realize that you still have to give yourself a shot? I mean, when I am half asleep, the last thing I want to do is jab myself with a needle. Oh, and today, I have a big, round, puffy mark on my leg from the shot. It's not red. It doesn't itch; it isn't sore. It's just a round mark about 2 inches in diameter. Cuteness.

I largely am writing here to document this stuff for me. That way, when my doctor says--how long has this been lasting, when did this go away, when did this start, etc., I have answers. Therefore, I understand it's not terribly interesting to anyone else, and I am okay with that.

I do look back to when I was working full time from January until May. Thinking to that time, I wonder how screwed I would be if that were now. Then it scares me--will my physical ups and downs affect my ability to have a career? I've worked too damn hard to have it all fizzle before I start. I guess, thankfully, being a professor (while a very demanding career physically and mentally) allows for some freedom in schedule, methods, etc. Depending on how I am feeling, in the future, I can adjust my teaching methodologies to adapt. Yes, that's it. I'll just keep hoping. :)

Thursday, August 06, 2009

So, yesterday was the last day of my IV steroids. I have been more prepared for the emotions that come with IV steroids, so I haven't gotten quite as angry--or visibly so. I have been able to tell B, my husband, that I am in a crappy mood and to leave me the hell alone. Harsh? Not when you think of what I may have alternatively said.

This morning, I woke up before 7 (which is way early for me!). I was having tightness in my chest, especially when taking a deep breath. I felt overall tight through the top of my body, and it just wasn't a comfortable or positive feeling. I felt a bit worried, actually, though the pain was not in my left side nor was it in my left arm. So, I went down stairs, thinking being up and at 'em would make it better. Not so much.

I called the nurse, and she said that all of this sounds pretty normal--not out of the ordinary--but to keep her posted. It could either be a raised blood pressure or an anxiety attack, both of which are normal side effects of steroids. It's just my anxiety attacks, in the past, are very targeted toward an irrational fear or feeling. Typically, they don't manifest as, "Oh my God, I am going to have a heart attack" feeling.

Since starting the IV steroids, I have noticed a slight difference in my eye issues. I may not have touched on this earlier, but my eyes hurt when looking side to side and up. Originally, this was associated with a migraine about a week ago, but the headache went away, but the eye pain remained (and got worse). They think it was optic neuritis, which steroids would be the treatment for that, anyways. So, we just went with it. I am still having numbness, but that's likely to subside with the oral taper I am doing.

The last few weeks have been so strange. I went to effectively "forgetting" I have MS to having all of these symptoms, a new medicine, and a round of steroids. It came on so fast, which emotionally and physically is exhausting.