- Type 1 Insulin Dependent Diabetes Mellitus (IDDM). I have had this for about 7 years, at least to the degree that I take insulin. I had a long honeymoon period before that time, during which I know that I would someday lose the ability to produce my own insulin, and was thus, eased into the disease. This somehow led to me thinking that I didn't really have it, and so despite having been Insulin dependent for 7ish years, I've only recently begun actually taking care of myself. As in, I never checked blood sugars, and when I bolused (I have an insulin pump) I just "guessed" frequently just doing a bolus of 25 units. Dangerous. So now, as in really recently, like the past three days only, I am trying really hard to manage it. Better late than never, and better now then in a few years when I lose my vision or toes because I'm a tool.
- Systemic Lupus Erythmatosus (SLE). My greatest foe. I have had lupus for 5 and a half years now. Early symptoms were joint pain and fatigue, and now we have progressed further to severe inflammation in the chest cavity (including pleurisy and slight periocarditis) which causes a lot of trouble when I breathe. I can't carry my own weight too well up stairs, or running or anything. Because of this, my exercise/cardio of choice is stationary biking. I can go real far, about 6 miles in 30 minutes, and it helps my heart pump and my muscles work, without the pesky trouble of my chest freaking out thinking I can't breathe. I've been on all the regular things, many of which my overzealous immune system has surpassed. The CellCept, and all those other things were long gone. I now am on 20 of methotrexate per week (injected ick), 10 prednisone a day, 200 Plaquenil, twice a day, Procardia (calcium channel blocker to help with my 2ndary Raynaud's phenomenon), Nexium (chronic heartburn as a child, along with other digestive woes- see Celiacs), folic acid, Colchicine about 1mg a day- teeny tiny things. I also take 2 excedrin extra strength every morning, and two excedrin pm at night. I don't use narcotics for pain anymore, but used to. Now I just kind of suck it up, and if I get horribly bad, I have a secret secret stash (not unlike House- only since I know that sometimes it IS Lupus, I don't keep it in my lupus book).
Sjogren's Syndrome- Gotta love dry mouth, not being able to cry when you want, your eyes being stickier than fly paper so you get crap in them all the time, and of course, unmentionable area dryness. Or not. That is the basic gist of it for sjogren's. I have to watch out for my teeth, as of course I am more susceptible to cavities and decay, and I already have had two surgeries for receding gumline issues, semi-related to it. boo.
Celiac's disease- Wheat and gluten allergy. This and the diabetes combine to make me have insane willpower battles. As a child, baked goods were my absolute favorite foods. EVER. So it blows that I have to only eat wheat-and-gluten alternative foods. To be fair, the market has gotten significantly better lately, some things even taste BETTER than regular foods. It sometimes seems like even when I eat food I am allowed to, (or not allergic to) I still have horrible digestive issues. I had my gall bladder removed a year or so ago, due to some lupus-related evil inflammation, and now have a ton of trouble digesting. I have to drink diet soda or seltzer with almost every meal, so that I can burp and release uncomfortable gas after I have eater. Otherwise it is very painful. Going to the bathroom is a nightmare on a daily basis, which again, leads to pain and difficulty in unmentionable areas. I am nauseous every single morning, some days to the point that I have to sit while styling my hair or makeup, just so I don't keel over with dizziness and vom. And, I recently discovered that I might not be properly digesting my medication, as one day, I took my pills at 7am, and then when I threw up later that day (around noon- I caught an actual stomach bug) there were still completely whole, not even a scratch, you can still read the ETCHING on them pills amongst the green bile. So we are going to see a real GI dr next week. So that I can actually get the meds that are supposed to be helping me.
That is the lowdown on the health issues. Some things I do that I find helpful lately are exercising, and getting massages. I know that a lot of people with diabetes are hesitant about the massages, but as long as you discuss it with your massage therapist, you should be fine. I am someone who works at a desk job, and my neck and shoulders retain all my stress. They become rock hard and combined with the chest pain from the SLE, it is pretty awful. A nice massage really really helps. There are a lot of places that don't charge too much, so I try to go every few weeks, to keep the muscles from tightening up too much. The exercising is really important too. I know with all these things it is really really easy to be lazy and too tired to drag yourself to the gym, but it helps a TON. Not only do I get the endorphin rush after biking my 5-6 miles, but I do some weight lifting (I am, of course, at major risk for osteoporosis, which I already have a bit, from the drugs, and the fact that I am whitey white girl. irish. pale skin. blond hair. blue eyes. DEATH for bones) and the weights help me out too. Plus the whole gym thing tires me out so that even if I am in pain, I sleep through it at night (sort of). And there are cute guys at the gym. Just blast your iPod and watch some ripped hottie lifting, it will keep you motivated! Other useful things: green tea. good for digestion, good for a little lift when you start to snooze at your desk (which happens a lot to me) and good for appetite curbing. Plus everyone is always touting its wonders. Can't hurt! One of the most therapeutic things in my life is my dog. She is a 22 pound cockapoo named Vivienne Tallulah, I got her just prior to most of my diagnoses (because my whole family thought I was dying so they bought me a puppy). She is the best. Petting her and playing with her just makes me calm down and not stress about bull. Even when I was away at school for my under graduate work, 4 years, she was something that really helped, every time I came home, she greeted me and loved on me without abandon. Everyone needs something like that. I also find that being distracted helps. Find a goal. Obviously, not something that is going to tax your health, or your energy resources (already a bit low!) but something you can feel devoted to that will make you feel good, even if you aren't feeling hot. I'm working on studying for my GRE's, in the hopes of getting into a PhD program (I was a summa cum laude BA in history- now I want more). My intention is to become a Dr., but not the kind that pokes prods and gives you awful meds and tells you that this is as good as it gets (yes I'm bitter). I looooooove history, and can't wait to get into grad school and be studying again. Right now, I'm working on my semi-deficient math skills, so that I don't bomb that portion. Other than that, working in an office, living at home (boo recession) and just trying (bit by bit and day by day) to take care of myself. As I said, the diabetes realization may have been late to hit, but I am trying. I hope I can share my stories, and read some others, and connect over this nonsense that is my life.
Feel free to ask or comment, or suggest anything!
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