You Don't Look Sick to Me

Ah.... one of my least favorite phrases. Having a chronic illness when at any age is rough, but when you are young it's harder for people, even doctors, to believe.

Last night I was in a lot of pain and slept on the bathroom floor. Whenever I eat cooked food or fruit (yesterday it was just some fruit), I get an intense pain in my stomach that roves. Then my body attempts to purge whatever I ate. It's not fun. Well, it's not fun for me. Annie thought it was great! Bathroom slumber party! She was actually really sweet. Things got pretty bad and I was crying and rocking back and forth and she climbed in my lap and tried to lick all the tears. When things settled down a bit, she curled up next to me on the floor while I napped. She was not cooperative when I finally crawled into bed at 4am and wanted her to go in her kennel.

Lance wanted to take me into the hospital, but I refused. There wasn't much they could do. Most likely they would want to give me something for the pain and then send me home with a recommendation that I see a gastroenterologist. And of course I would hear the usual, "your blood work looks like it's from someone really sick, but you don't look that sick to me." Or my favorite, "Are you feeling ill, because you don't look really sick?" Then they ask my husband if I'm normally pale, he says yes but not that pale. Then they ask him a few more questions to confirm I feel crappy. I just didn't want to have to convince someone I felt horrible, and I knew that if I waited long enough, things would die down. I don't go to the ER without cause. I don't enjoy it, and to be at the point I'm willing to deal with all the questions and people poking at me with needles, I have to feel really, really awful. Last time I went to the ER, I was blacking out whenever I stood up. In retrospect, I really shouldn't have waited that long.

This morning it was, needless to say, a little hard to wake up. Annie crawled under the covers and then started jumping on my head. That woke me up and I was able to get into work at a decent time. My doctor was able to fit me in the afternoon and my husband drove me in. It was really nice that Lance was able to take me into the doctor because I'm not sure I trusted myself to drive. My doctor was very compassionate and encouraged me to take some medical leave. My stomach has been flaring for at least 3 weeks and I have a lot of signs of malnutrition (my period was 3 weeks late, my hair stopped growing, bruising, etc.). He's not sure what all is going on, but it testing me again for parasites and starting me on a medication to calm down the histamines and mast cells in my g.i. tract. He feels that the immune cells in my g.i. tract do not recognized the food I avoided for the past several months as food anymore. Essentially I'm allergic to most foods. An allergy is an inappropriate immune response to something that is naturally occurring. I would say that's what is probably happening.

Over the next few days, I will be gathering my paperwork and getting ready to start this new medication. Because it does counteract histamines, I'm told it will make me very drowsy. It may take a couple months to work properly. I'm really hungry, but my stomach hurts a lot. I'm not sure what to eat. I'm tired.

Next week I'm going to get an IV to help get some intravenous nourishment. I have medical tests being run and more to take. If I take some leave time, I'd like to keep working at the heavy metal detox and getting some more foods into my diet without a lot of pain. Being so tired all the time really drains me of any resilience. Work is harder and mistakes happen more often (and when they do they feel like a much bigger deal). Typically I have a very strict work ethic and need to succeed, but lately I'm just trying to get through the day and function.

Systemic lupus can attack any organ system at a time, so the symptoms I'm having aren't a far reach. Other symptoms have been flaring too. Arthritis, fatigue, etc. Weight loss and nausea are really common, and I wonder what is at the bottom of it all. Maybe these mast cells and histamines are a problem for others with lupus.