In one of my (online) classes (for grad school), I wrote in this week’s discussion about my love of finding connections in unsuspecting places. I get so excited when I hear a word I’ve never heard, then, soon after, find the perfect opportunity to use it. I learned about Ockham’s razor during a class I took in my sophomore year of undergrad, so, 7 years ago, and recently, I found the perfect place to apply it in my writing. The prospect of knowing that I will continue to find new connections, and that through them, I will learn and grow and discover, is what makes me look forward to each new day.
I also love intersections… I like to learn about two things, seemingly unrelated… and figure out where they intersect and what happens when they do. For example, I’m studying a form of literary criticism in one of my classes. My immediate question was about what happens when we apply this is disability studies. The two are unrelated by nature, but we can make them intersect… like, maybe a book is about a disabled person, or maybe the author had a disability, or maybe the reader does… what do we learn at that intersection?
On Tuesday, I had a series of medical procedures under anesthesia, all GI related. One of them was a replacement of my feeding tube. Due to my underlying medical condition, my body almost never responds to almost anything in a typical way. One of (zillion and one) quirks is that almost every feeding tube is made of a substance (silicone) with which my body reacts and somehow turns the formula in the feeding tube slowly to something very hard. It coats the inside of the tube and builds up over about a week, sometimes two or three, and, before long, the entire tube is closed off. No doctor I’ve encountered has ever heard of such a thing, and one or two have accused me of purposely creating this situation for attention. It’s just that weird that they can’t fathom why it would happen.
So, there is ONE feeding tube on the market not made of silicone. I told the fellow and then the attending about it. I told the dedicated nurse. I emailed her photos of my tube as well as a link to the place where the tube can be bought online. When I went in for the procedure, before I was “under,” I told all the nurses, the anesthesiologist, and reminded the doctor. They answered me, yes, yes, go to sleep, we’ll take care of it.
I woke up with a silicone tube.
I met with my doctor after I woke up and she said that the tube I had in was absolutely disgusting and falling apart. It looked rusty. It HAD to come out. Yes, I know, that’s why I’m here! Well, she said, by pulling it out, I obviously had to put something in, and (the silicone tube) is what I had.
This is where autism and its effects on my communication skills come in, not to mention having just received a ton of anesthesia (I had to be woken up with the scope down my throat because I wasn’t breathing well… I was not pleased). So, I thought I had made it ridiculously clear that I needed a specific tube to be put in… and what I wasn’t able to make sense of was whether she had told me why she didn’t have it on hand. I didn’t get that part. I was alone (as in, my mom is out of town) and, well, that’s where it got left. The doctor told me that she wanted to do a surgical procedure that would get me off the tube, anyway, so I really won’t be needing it.
Well, number one, I will not submit myself to that surgery. Reason #1 is that, even though the doctor won’t admit it, the surgery has very serious risks. She wants to enlarge the opening from my stomach to my small bowel so that food/liquids will pass more easily. But, the surgery is not reversible, and if the hole is made too big, then I would have what is called dumping syndrome, which makes you feel like utter crap every time you eat, but in a different way than I do now. Also, the procedure can cause scar tissue to build, and that can be very painful. I have enough pain. Also, the procedure would not help the severe pain caused by the nerve damage to my stomach. All in all, nope, thanks, I’ll keep my useless stomach the way it is.
So, the doctor said that that’s really my decision, that we would start this new medication, and that, if I didn’t respond, I would need to find a new GI doctor.
Because my body is crappy at absorbing anything through my gut, the chances of the med (which has to be bought from Canada) working is… not great. But we’ll try. The issue of finding a new GI doc is very stressful, because I’ve pretty much exhausted the docs in Pittsburgh who are even willing to take a case like mine.
Now, before I go any further, the Gi doc I am seeing is a very, very sweet young lady. She really does care. She wants to help people and she wants to help me. I’m just not sure she listens well enough (she always seems very distracted) to do that.
As she was about to head out, she mentioned that so much depended on whether I had mitochondrial disease or not. Mito is progressive, and if I do have it, then it makes a lot more sense not to go gung ho with all these surgeries (which are very, very hard on my body… I don’t always fully bounce back from each one) and meds and paying out of pocket and such, because there really is no point. But, if I don’t have it, then we can consider trying things and expect some of them to work.
Upon returning home, I touched base with my genetics team at Children’s. I told the genetics counselor what was going on and asked if they had any suggestions for a GI doc who could a patient like me, because I know that, mito or not, my GI system is much like that of a mito patient. I told her that a lot was a matter of waiting to find out whether I had mito or not, so we would know how to proceed.
She said that she is comfortable saying I have mitochondrial disease at this point. Mito is extremely difficult to diagnose; genetic testing is not advanced enough (and where it is, insurance companies are not willing to fund the testing). So, the first round of tests were inconclusive, but, my clinical situation is such that it’s hard to argue that it’s anything BUT mito.
This explains e-ver-y-thing… autism, diabetes, weird neurospsych issues, migraines, gastroparesis/no gut motility, poor absorption, hypothyroid, autonomic dysfunction, v-tach, vision issues, energy crisis, extremely slow resting metabolic rate, muscle spasms, muscle weakness, wonky blood work, hypermobility, super fragile skin, skin conditions…
There is no way to tell what my future holds. I’m choosing to continue to advance my education and plan to work in whatever capacity I can, online. I plan to write. I plan to see my nephew grow up and be his aunt and godmother. I plan to publish more books. Above all, I plan to be a testament to God’s grace, goodness, and healing. I plan to in His love.
None of that changes with any diagnosis, progressive and uncurable or not. It just doesn’t. And it won’t.
Now, I mentioned intersection at the beginning of this. Here’s where I wanted to go with that:
I am participating in a study through AASPIRE. The folks there created an online healthcare toolkit for adults with autism. I answered a bunch of survey questions that asked me about all sorts of things related to going to a primary care doctor, and, based on my answers, the toolkit created a 3-page, bullet-list report that it will send to my PCP. It address things like: writing down important info, the role I want my mom to play in my care, how to tell if my anxiety is increasing, specific ways to make the office more sensory-tolerable for me (i.e., darn those fluorescent lights!), and the fact that my speech often sounds fluent but may or may not be what I actually want to say.
After seeing the report, I contacted them and asked for more copies of it. I want to share it with all of my providers. I cannot wait until this tool is publicly available. I will be sharing it all over the place once it is!
So, that’s the intersection of my multiple story lines in this post. It’s the intersection of “medical me” and “autism me,” both in the healthcare toolkit and the clinical diagnosis of mito.
Say a prayer that my body chemistry has changed such that this dang tube will last, because a morning in the GI Lab under anesthesia is overwhelming from medical and autism perspectives. I’m still not feeling well from it and the sensory bombardment and the lack of understanding of autism in that environment are very, very difficult to handle. I’ve been okay during the day, but this is the third evening in a row that I’m highly agitated and uncomfortable… but, of course, I can’t really tell what’s wrong or figure out how to feel better. It might be migraine-related. Or maybe not. Don’t ask me!
If anyone has any stories for me, any questions about suggestions for handling medical “stuff” with autism, please shoot me an email at firstname.lastname@example.org. I’m happy to engage any of those discussions!
For more info on mitochondrial disease, visit http://www.umdf.org.