I love medical stuff. Always have. From a very early age, I wanted to be a surgeon. In middle and high school, I volunteered at the hospital… and sometimes, they’d let me scrub in and watch surgeries here and there. When I was 16, I attended the National Youth Leadership Forum on Medicine in DC and spent 10 days doing all medical stuff, all the time. I watched Discovery Health, exclusively, for several years. Suffice to say, medicine is one of my lifelong special interests.
I was diagnosed, rather traumatically, with type I diabetes at the age of 3. My blood sugar was almost 1000. I was delirious. They held me down and tried to get an IV line started for I don’t know how long, but it was a long time, and I spent a week in the hospital. The thing is… I never cried, never fussed, never really complained. That’s not normal for a three-year-old who just went through something like that, but because of the ASD, I wasn’t able to express myself. Obviously, my life changed radically from that point. I was able to test my own blood sugar from the start, administer my own shots by first grade, and accurately count carbohydrates in just about any food by the time I was ten or so. I got my insulin pump when I was 12, and I was totally independent.
My blood sugars have always been really brittle. Up, down, left and right, so hard to get any sort of hold on them. But, life plugged along, and I dealt from day to day. It didn’t really bother me, because it was hard for me to remember any different.
As we rung in 2012, I started puking every morning. Over the next few months, I would wake up and throw up every so often until about 5 PM. I started gagging on almost everything I ate, even favorite foods. It was a battle to get anything down and keep it there. I was so nauseous that if I thought about taking a shower, I would throw up… because the shower is in the same room as the toilet, and the toilet always triggered vomiting. So did cleaning the cat litter, or doing the dishes… you get the idea.
Then, the pain set in. Holy freaking I don’t know what, it was awful. I mean, it is, because it never really left. Long story short, turns out my stomach is paralyzed, so food basically sits in there until I throw it up. Also, I have nerve damage to my stomach, hence the fire. And spasms. Thank God for my feeding tube. It’s a life saver, quite literally. The condition is called gastroparesis, and it’s a bucket of fun.
Things kind of continued down hill. Some of my symptoms make a lot of sense. Like, I have hypermobile joints and incredibly fragile skin… that’s due to Ehlers-Danlos Syndrome, which means that my body lacks collagen, or the “glue” that should hold me together. Causes joint pain and sometimes ruptures, of which I’ve had a couple. I also have issues with my autonomic nervous system, so my heart rate, blood pressure, and temperature can be wacky. My heart goes into a nasty arrhythmia, which is supposedly unrelated to everything else. I get migraines. The list goes on.
At this point, things will go one of two ways, depending on the results of genetic tests that will take roughly a year, if not longer, to come back. If I am genetically okey-dokey, then I’m planning to pursue a pancreas transplant… which would mean no diabetes. Yes, all the other stuff would stick around, but it would take the level of scariness out of it and I could probably get away from the nursing home. Option number two is that, if I do have something genetic or mitochondrial, then this is kind of… well, I’ll be sticking around here. Which is okay, because I’m still going to school and will someday work from my hospital bed, if that’s what it comes to. I’m not going to let this stuff limit me.
Medical stuff is fascinating to me. Like any other special interest is for an Aspie, it consumes me. The problem, when you’re consumed with your medical stuff, is… well, there are many. One is that your doctors begin to think you’re a nut case. I do not invent illness (which I’ve been accused of doing many times). I do not lie about my symptoms, either. Am I utterly fascinated by them? You bet. Rightfully so, too; I’m a really unique case. Am I utterly fascinated by almost anything I can get my mind around? Yeah, I tend to get a bit absorbed, to say the least. But when you talk endlessly about health stuff, people get really, really weird. And you get diagnoses like Munchhausen’s… and then, there is really nothing you can say or do to prove anything to anybody, because they can’t feel your pain and nausea and whatnot. Test results, which show just why you’re feeling sick, don’t really seem to matter anymore, because you’re accused of skewing them. So, you’re kind of up the creek by that point.
Thankfully, the people at the nursing home believe me. I have a day nurse, C, who seriously has to be Superwoman in disguise. She’s incredible. She knows me very well; she comes in every morning with my myriad of meds just the right way, cold Diet Mountain Dew in hand, and we talk about her mama cat having babies and my sweet nephew and everything, everything in between. She trusts me. I appreciate that. But, when she called my GI doctor to tell him how serious my motility issues had gotten, he told her that I was feigning my illness, that it was impossible for one person to have so many wacky things happen. My body apparently doesn’t read the text books. It doesn’t do anything the way it “should.” Way to be sick wrong.
I have appointments with two different GI docs in a few weeks, and a new primary care doc this week. I am desperate for someone to help. The most important hurdle will be whether they believe the opinions of my other doctors expressed in my records.
Even my family isn’t quite sure what to think. My mom was the first to say that I have Munchhausen’s. There was a time that she wasn’t even sure that my pain was real. It’s terrifying to have that kind of pain and have no one believe you. Terrifying.
I guess this message is in hopes of a couple of things. One is to warn my fellow Aspies… watch out for how your interests come off to other people. Check in with someone you trust before anyone says anything. Don’t let it be too late. The second is just kind of wondering if anyone has any ideas or thoughts about how to approach the new doctors so that they believe me. I still don’t understand why so many test results don’t prove things to be the way they are. Sigh.
And, by the way, I sincerely tried to represent any and everyone’s thoughts, words, and opinions as they meant to convey them as I wrote this. I have no hard feelings toward anyone (except maybe the GI doctor!), and I wrote it with an understanding that they can read it. I hope that, if they do, they feel that I have represented them accurately.