I am feeling somewhat hopeful tonight. I know I haven't been writing a whole lot on here and mostly because between my kids, housework and not feeling well, I just never feel like staring at my ipad to write anything, plus I feel like I never have anything interesting to write about. But tonight, I DO have something interesting.
My motility doctor has been following my case very closely, especially now that my weight is 87 pounds and I'm struggling to put any back on. I was just back in the hospital a couple of weeks ago for the same problems I always have. Severe stomach pains, no stoma output and nausea/vomiting. I was taught how to give myself am enema using a catheter through the stoma since looking at my X-rays, my doc has noticed stool build-up and dilated loops of small intestine around the areas where I'm having severe pain. So whenever I notice an "attack" coming on, I can give myself a little flush out and hopefully avoid a hospital stay. I'm also taking Miralax twice a day to keep my stool mainly liquid since it's usually thick and causes problems just from that. Anywho, I'm getting off track.
I had a follow-up with my doc from my last hospital visit. I had brought my friend along with me (she was my ride in). While the doc was in the room, she asked me if I had ever mentioned my other problems not relating to GI function with him, which I haven't. His curiosity got piqued and asked me to tell him more about my other problems. I had mentioned my blood pressure issues and how I will faint upon standing sometimes but almost always get dizzy and close to passing out from it. We talked about how I'm always cold and have low body temp and he asked if I sweat, which I really don't even if I'm hot. I told him it's been almost a year since I've had a menstrual cycle. And my horrible fatigue that I will experience. He had me fill out a medical release authorization to get the results of my tilt table test that I had failed in December and to get my lab results from my endocrinologist.
So, he is thinking all of my issues ARE connected, just like Dave suspected. I am being tested officially for dysautonomia. He said that the blood test for that isn't 100% reliable! that sometimes people can have normal results and still have it. I am also being tested for something called Addison's disease. It's basically when the adrenal glands aren't working sufficiently, if at all. Both diseases I have the majority of the symptoms for. Addison's disease has a symptom where you have intense salt cravings. I have to keep a pack of pretzel salt on hand and just lick salt off of my hand. Also reading Addison's can be caused by autonomic diseases, so it can even be possible I have both. Addison's has a treatment plan to help with symptoms, I would basically be on 2 different types of steroids for my whole life. It would supplement the hormones the adrenals aren't producing. The dysautonomia is just treating symptoms and no real treatment or cure for it. I don't even care right now that I more than likely have one or both of these diseases. I am happy to finally have hope of knowing what is happening to me and why! Doing my own internet research I find that people with Addison's can sometimes have adrenal crisis during times of body stress. Reading about what that is, I am pretty sure I've had that happen to me at least 3 times that I can remember the first time being whenever Gianna was just a baby. I am anxious to hear what the results of the blood work will be and what steps need to be taken next. I am kinda convinced that it is Addison's disease, though. And only me would have a rare disease that only affects 1 out 100,000 people lol. I just want to be able to put a name to what is happening or at least know why it's happening and if I should expect the rest of my life to be more or worse than what it is now.
I am off to bed now, though. Gotta be up early to drive my dad to the hospital for his surgery. I hate waking up early lol.
