Sunday, November 7, 2010

Sometimes, I just don't want to know.

The last few days have been more on the roller coaster. On Wednesday we went back to the hospital fully expecting to have to stay over at least one, maybe even 2 nights. I was so ecstatic when the doctor said that there was no need to keep her over that I promptly forgot most of the questions that I had wanted to ask. I remembered a couple, and happened to answer them while I was asking. For one, the bottoms of her feet have been hurting, primarily her heels. It must be from the weight gain. I have been trying to put some meat on that girl's bones for quite some time now, but I didn't want to do it this way! She has gained so much Prednisone water weight that her little eyes were almost hidden by the puffiness yesterday. It was so bad that Thursday night- after Wednesday's Solu-Medrol IV- she was snorking while trying to sleep. She sounded rattly, but I knew it wasn't an asthma issue. She's really sad and depressed about how she looks right now. Her clothes aren't fitting her properly and she has a hard time walking because of the little belly. She walks like she's pregnant. I keep telling her that it won't be that long. Already they are decreasing her dosage, and though it isn't much of a change yet, it is a change. I called and spoke with a nurse about my concerns. I was worried about the breathing. She has been worried about the breathing. When it scares my brave little wonder girl, it's time to call. They assured me that this is normal, and at least the dosage is being lowered. They don't usually have to keep the kids on that high of a dosage for very long. One thing that I learned from our appointment is more on the Mixed Connective Tissue Disease.

Well, all along I had thought of her arthritis as her primary disease. Nope. The MCTD was only thrown at me in June, I think. It was right before the conference in July. Even then, it was put as "Hmmm, I think maybe she has a little Mixed Connective Tissue going on." Our old rheumy explained that it's an overlap syndrome. (Apparently, not so much.) That made sense at the time, and honestly I didn't research it as well as I should have. I did Google it a bit and came up with almost nothing. Soooo, our new rheumy has been ordering every possible blood test, checking every little thing. You know... how it should be. She told me the other day that she has a positive RNP Antibody, (Ribonucleoprotein) which means that it is Mixed Connective Tissue Disease. Ok. I guess that antibody held the magic key for Google, because after running that I finally found some answers! And I found that I've had it all wrong. The MCTD is the primary. All of these other things- the Raynaud's frost hands, the arthritis, the dermatomyositis (muscle inflammation & loss) is all because of the MCTD. Apparently, a very, very small amount of people have true MCTD; only a very small percentage of the MCTD community gets myositis. Simply put, if these diseases were akin to winning the lottery, she'd be a freakin' billionaire. How lame is that??? With this disease she has a 23% chance of developing Pulminary Hypertension, a 43% chance of developing Pleuritis/pericarditis, and the list goes on. Not to mention that this opens the gateway for other connective tissue diseases to hop on over uninvited. So, that put me in a pretty crappy mood on Friday. Reading all of that on top of watching her blow up and become so uncomfortable and sad... it was a lot to absorb all at once. Then I come home to find out that my video card in my PC had decided to take a crap and color my screen with tiny red squares all over. And Kevin's monitor is going. However, he reminded me that we have another monitor. And, thanks to the kindness of family, I have a new vid card!!! (Thank you so much again, Lita & Ray!) They brought it over today while I was at work! Not only that but when I came home today I found that Emily's face isn't as puffy, her breathing hasn't bothered her today, she's been moving around a decent amount today- feeling better. And then, I checked my email to find new mail from my school. My financial aid went through!!! I'm so excited! That means that I can start taking courses in the spring! I can't wait to get started!

Needless to say, this week has been full of ups and downs. I try hard to always stay positive, to look at the little blessings, but some days that is very hard to do. I think that some days you really need to be down, to let it get to you so that you can clear your head. It doesn't happen often, but I think it's healthy. One of these days I'll have a good breakdown. I know I need one, but I'm so used to being strong that I haven't been able to find the time to accomodate that need. That's ok. It will happen one day. And if not, life goes on. I am pretty sad about the MCTD. That means (I'm pretty sure) that she will likely not be in the 1/3 of people to have the myositis issues once and never again. This is probably going to be something that she will have to struggle with on and off all of her life. However, I haven't been able to find anything to say for sure. Chances are, since this field is so confusing even to the specialists, they probably don't know. And that's something that needs to be changed. These diseases are rare, so they don't get the kind of funding that Diabetes or Cancer get. Not that I have a problem with them having research funds, mind you. I just think it's crazy that this field just gets thrown aside. Why, you ask? "It's only arthritis, no big deal. At least it's nothing serious. Yeah, ok. So many diseases have arthritis as a symptom. This isn't the "oh, I played too hard as a kid and now I have arthritis in my knee" arthritis. This is the "Holy crap, my body is attacking itself and going crazy on me!" arthritis. This is the can't-get- out- of- bed- in- the -morning arthritis, in pain all of the time, deformity causing kind. Thanks to the new biologic medications you don't see nearly as much deformity. These are very, very powerful medications reserved for very sick people. And for many, the arthritis is just the beginning.

No comments:

Post a Comment