Friday, January 6, 2012

I am not my disease

So I guess I should do an update and post some new year's resolutions or something like that...

This week has been crap in terms of pain wise. It is probably the weather, but my joints and muscles hurt so bad it takes great effort to get out of bed everyday and most of the day I can't get out of bed. I only really move if I have to. It was super cold this weekend (I'm talking real feel temperatures of negative 3 degrees) and it just killed all the good muscle gaining process I've made. In particular my ankles, toes, knees, wrists and the middle joint in most of my fingers have been hurting especially bad. Yesterday, I got up in the middle of the night/morning to go to the bathroom and literally collapsed to the floor because my ankles were in so much pain they couldn't hold up my body weight. I don't weigh that much, but it was enough to send me to the ground literally. I used mom's cane most of the day yesterday to do the things I needed to do, until the afternoon when everything started working itself out more. I always feel better in the afternoon, unfortunately for me all my classes are in the that might be an issue. My labs are in the afternoon though, and those are going to be the most intense demand of my energy and body control. As long as I can get to school I can sit there, it will hurt but I can do it, maybe. The labs are what I'm scared about. I remember when I was at Catawba in chem labs I would shake so bad I couldn't get accurate measurements for my beakers and weights of chemicals and what not and now I am tremoring much worse and have much less muscle control so I'm nervous I'll fail my chem and bio labs just because of my physical limitations...but I hope the professors are better/nicer than that.

Anyways, in other health news, and I don't want to jinx it colitis has been in remission for almost a month now. It will be a month next week. I am so freaking excited. I haven't been in remission completely for almost 2 years now. Knock on wood, I haven't had to plan my life around what if there is a bathroom, or am I going to be anemic and need a transfusion this week from the bleeding, or waking up 5 or 6 times a night (though I still usually wake up once but I think it is out of habit and being used to not sleeping because I don't go to the bathroom I just wake up), or being in intense pain in my abdomen. I've still had a couple of "episodes" but nothing like what I was doing and it is usually when I'm stupid and eat foods that I know are not digested well and a lot of them at one time (like a large popcorn at the movie theater) or something like that. Otherwise, I have been colitis flare up free and it feels amazing! I am so happy the new medication is working and now all we have to worry about is this other stupid illness whatever it is. I see the rheumatologist 3 weeks from today and I absolutely cannot wait. I've been keeping a journal for a couple weeks now of every symptom I have and what time I have it so that they can have a good baseline of data. I'm also trying to get all my test results and records from all my different doctors so we don't have to start completely over. Believe it or not, I'm getting a little tired of paying for and doing every test over and over again. So hopefully, in 3 weeks we will be on a diagnosis/treatment journey for whatever this is and maybe my whole body can be in remission and I can be 'healthy' again :)

K, time for some new year's resolutions...

1) Get out of bed everyday, even if I just make it to the couch or table for a meal, get out of bed everyday.
2)Go to school every day I possibly can, do not use my disease as a crutch to skip class and do whatever. This is an opportunity I wanted, don't waste it.
3) New recipe every week...something good to not just like chicken and rice, but more like blue cheese pork roasted salad or something crazy like that.
4) Go to church every week in some capactity
5) Meet 1 new person a month and really get to know them. I'm not talking hey, my name is megan, I'm talking get to know them...I'm lonely here maybe that will be a good way to form friendships. It will probably also be easier since I am getting more involved with my church and school and stuff.
6) See Christine
7) Save money to make this a reality (which will be hard since I don't really make money...but we'll figure that out)
8)Start a celiac support group here...I really miss that thing...
9)Be able to run or walk in a 5k by the end of the summer...I realize this will probably be walk and that makes me sad...but right now walking 50 feet without being out of breath is an ambitious goal and that is sad for a runner...this will also require being correctly diagnosed and treated for whatever I have right now
10)Follow dr's orders...take my medicine every day, rest, do what I'm supposed to so I can get better one day

and last but not least, I want to let my relationship with Christ identify me, not my disease. I have been getting very down lately and it has made me an irritable, cranky, mean person and even though in my head and heart and whatever I know I am not the only one in the world that is this sick I've been feeling like it lately and it is bringing me down. But I need to not let that happen, I need to keep my focus on God and try to stay in a good mood and positive, even when I'm laying on the floor, flat on my face because I passed out or my muscles quit working or whatever. When I'm up at 4 in the morning so tired I want to sleep, but can't because my body doesn't want to sleep. When I'm hungry and can't find one restaurant open that has food I can eat and there is no food in the house I can eat and I don't want to go to the store. When I am so tired I can't stay awake, but have to go to class or the doctor or some other important errand. I need to be happy and positive...because if I'm not happy and positive then the disease wins...and I don't know if you know this or not, but I've read the Bible and the only thing that wins in the end is Jesus...not a disease, not a bill, not a doctor...Jesus...He wins, and we win by having faith in Him. So I am not my disease, I am a daughter of Christ and because of this, one day I will win the battle and it will feel oh so good...and that is my new year's resolution :)

No comments:

Post a Comment