Thursday, September 10, 2015

Dinner Time

    A few years agoI was diagnosed with gastroparesis, which is a fancy term meaning my stomach doesn’t work right. It’s “paralyzed” which in my case means it is very, very slow. So not total paralysis but food sits awhile. The treatment for this is following a restricted diet. Sounds easy right? HA!
    You see, I’m not supposed to eat fibrous things. Like raw veggies or fruits with skin. They are very hard to digest. So salads are out. (As someone who has tried dieting by salad, that is a secret yipee!) But I really do like salad. The down side is the fact that veggies keep the digestive system healthy and regulated. Which for someone with Sjogren’s can be a real problem. So veggies are in?
    And what about breads? Everyone knows whole grains are best. Except grains are hard to digest. White bread is easier on the stomach. But white bread isn’t good for me. It breaks down into sugar in your system and causes an insulin spike which creates swelling. That’s the worst thing for an inflammatory disease sufferer. So no bread?? (But I love bread.)
    So I have a salad, or not, and a roll that’s whole grain, or maybe white, on my plate so far. Meat? I love chicken. Much more than red meat. But chicken can be tough and stringy. That makes it hard to digest. Pork is even worse. Unless it’s cooked just right. And ground beef just plain hurts. Well I guess I have to go vegetarian. Oh, yeah! I can’t eat raw veggies. So meat but no meat?
    This is getting ridiculous now. Can I just get to the dessert? Please? Oh really? Sugar isn’t good either? More swelling? Great. Sugar free chocolate pudding it is. (No I am not giving up chocolate!)
    That went well! I have a salad, or not, and a roll that’s whole grain, or maybe white, meat but no meat, and sugar free chocolate pudding on my plate. Sounds...well...I’m not exactly sure how it sounds. I’m totally confused as to what I’m actually going to be eating. Can anyone explain it to me? I really need a drink.
    What? I can’t have alcohol…
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Thursday, September 3, 2015


Hot Flashes

    It’s hot out. Again. Very hot. And humid. Just the weather I hate. You would think living in Western NY that I would love hotter weather with our record setting winters. But I don’t. I despise it. And it’s not pain. Yes, I swell like the proverbial balloon, but it doesn’t hurt like the cold. It’s the fact that it turns me into completely different person. Because it totally incapacitates me. Inside, I am normal and somewhat pleasant (just being honest here). Outside though, I am the Wicked Witch of the West about two screeches before she disappears in a puddle under her giant hat.
     I am being totally serious here people. When the weather is cold, it’s easy to understand that those of us with autoimmune issues will experience pain. Most autoimmune issues involve the joints, skin, or circulation all of which react severely when exposed to the cold. A few years back I fell and my arm went into the snowbank up to the middle of my forearm. Not only did I probably wake the dead in the cemetery down the road, but I scared the daylights out of my brother and sister-in-law who became convinced I broke my arm and were completely confused when I kept yelling for a towel. I have  Reynaud’s and touching cold objects causes extreme pain for me. But the pain can get just as bad with consistent cold that seeps into the body freezing joints and slowing the circulation that keeps everything warm and as close to normal as possible. That causes a deep ache. That is the constant underlying pain of Winter.
    But I am talking about Summer. The domain of Heat Miser. ‘Everything he touch(es), starts to melt in his clutch’-remember? These are the days when I live in the basement. Having a raised ranch, the lower level is half below ground giving me a much cooler sanctuary. Or prison, depending. Even at several degrees cooler, when I’m down there I need a fan. I mean THE FAN. Our industrial sized fan that keeps the air moving and me cool. And close to ‘normal’.
    You see, heat affects everyone. You feel sticky and tired and UGH. So for me, the definition of normal (in the heat living in the basement) is generally bored, lonely, and a bit snarky. I can try to do some laundry but the effort turns me into a sweaty, moody mess very quickly. Yes, I have Sjogren’s and I sweat. Alot. A big part of my problem. Some of us don’t. But I do and I have to be careful. So I keep Gatorade and water and salt nearby all summer long. And my fan. At least when I am inside.
    But take me outside, and I don’t care what I have with me, I’m done. The heat/humidity combo hits me like I’m on Mars. Yes, I am picturing any number of movie scenes when an astronaut loses his helmet on the Red Planet. (It always looks so hot there) Not only do I immediately feel deflated and dehydrated, but I can’t breathe. To take a full breath suddenly requires more energy than I am capable of but actually possessed not two seconds ago when I was inside the house. Today for instance, I barely made it to the mailbox. And I still had to walk all the way back. And our yard is not large. So I really don’t go out in the Summer. (Now you know why Cold Miser is still my favorite!)
    I have no clue why this happens. I don’t know the disease process or the biology. Only that it does. And that it makes it impossible for me now to enjoy outings with my family, to work at the job I love, to relax by a pool with friends, or just to stand outside and chat with neighbors. If it’s sunny, I still feel it. The pull of all the energy from my cells. But I can survive in shade. But add high heat or any humidity and I’m done, do not pass GO, banished to my basement-my little cave.
    So now maybe those of you who have seen my basement understand why it looks like a beach. From paint to decor to the sea glass fireplace. When you have to live in one room for up to a week at a time during a heatwave, it helps if it looks like paradise!

Sharilynn Battaglia