When you’ve undergone test after test to figure out why you are sick, there is a moment – a moment when a test turns up information. Not quite a diagnosis, not quite a precise answer. But still, it is something to cling to in a landscape colored by bias, insurance industries, and sexism, of people who don’t believe you are sick.
I’ve been on a multi-year journey to understand chronic health issues – mainly GI related. I thought my hysterectomy would resolve matter. It helped, but not by much. I had endoscopies. They said I didn’t have GERD. Most of my doctors told me to lose weight, the eternal magic fat girl solution.
In the winter of 2020, I met a gastroenterologist Physicians Assistant (PA) who told me I might have a GI autoimmune disorder. That fit with my symptoms, especially food dsymotility (not moving through the system at the appropriate rate.) She laid out a testing plan to rule things out, rule things in, etc. I got about 1/3 of the way through before the pandemic shutdown began in earnest.
I got back on that horse in the spring of 2021 with a different PA. More testing And like someone clearing a house, each room was fine – all systems are working fine. Endoscopy, colonoscopy, four ultrasounds, lots of blood, lots of peeing in cups, a four hour stomach motility test involving scrambled eggs and nuclear medicine, etc.
Everything was great. No GERD, no colon issues, scans were clean, my organs are functioning well, etc. Oh, and I insisted my PCP retest me for diabetes since doctors love to warn fat people about that. Nope. No sugar issues, blood pressure still great, cholesterol solid. Also no IBS, no celiac disease, no other gastro autoimmune disorders.
I had been banking on the food dysmotility test that fit all of my symptoms and was tied by John Hopkins research to autoimmune issues. Nope. My stomach was motile. I was crushed both by the lack of answers and the prospect of just continuing to be sick.
Being sick for me has been awful. My main symptoms are being chronically nauseated and having no appetite. Both of these have wreaked havoc on my entire GI system. My lower abdomen hurts all of the time. I’m very weak most of the time and have even fainted. I’ve lost nearly 25 lbs and don’t you dare suggest that’s a good tradeoff or benefit or some such fatphobic crap. I am miserable and uncomfortable and often in pain.
Along the way, I was seeing an ENT for my sinuses, discovering I had a “naturally narrow throat” that might need to be treated with dilation using a balloon or a stainless steel apparatus. I had tonsillitis that kept me in bed for several days. I was bit by a kitten and had some weird kidney issue.
Then, September 30, I finally got the news that I had oddly been waiting for – we found something wrong. It is my esophagus. It is dysmotility, just further up the GI tract. A barium swallow test had revealed this problem. I have to go for ANOTHER tens, esophageal manometry, that is basically a endoscopy through your nose. And they discover if the tail end of your esophagus is narrow and thus preventing food and beverage from moving through into the stomach at the normal rate. This can create reflux, but it is NOT GERD because the reflux comes from the food backed up in your esophagus, not your stomach.
There are some medication treatments, but I’m already taking some of these. They can use dilation to expand that portion of the esophagus and they can actually operate to slice it open laparoscopically.
Why does this happen? In some cases, it is a result of trauma to the esophagus (or trachea) but for most it is simply a seemingly genetic condition. Research over the past 10 years has supported this as related to autoimmune issues. But which one?
So I was right – dysmotility and autoimmune, just the esophagus rather than the stomach. Who on earth would have thought of that?
And then there’s the fact that both my trachea and esophagus are naturally narrow and both cause problems for me. I wonder if they can treat them at the same time under the same anesthesia?
Maybe the problem isn’t that I’m fat, but how medical professionals treat fat people. Maybe the problem isn’t that I have a MH diagnosis, but how the world perceives mental illness. Maybe the problem isn’t that I’m thinking ahead to plans that might be needed for surgeries requiring hospital admission during a pandemic, but that I’ve been put on hold for 50+ years.
I’m going to hope that AHN’s stellar standards in this level of care translate into prompt, effective relief for me.
For now, I’m trying to hold on to that moment, to affirm my ‘gut’ feelings about this, to have some hope I’m not going to ebb away.
A few tips
- Don’t congratulate people on weight loss. You have no idea why they’ve lost weight and it isn’t your business. If they are sick, you are congratulation them unintentionally on being sick. That’s gross.
- Don’t offer solutions or suggestions or remedies unless you are asked.
- Do say things like “I’m sorry you are going through this. Is there anything I can do?” or even “That fucking sucks.”
- Ask if you can send a casserole or the equivalent.
- Don’t offer up your own medical horror story unless asked.
- Don’t ever ever compare people’s medical traumas. It isn’t a competition.
- Don’t diagnose me – whether it is celiac or Lyme disease or GERD or lupus, you aren’t a doctor or your aren’t my doctor and if you were, I wouldn’t be chatting with you on Facebook.
- Post a FB hug on my timeline and then contact me privately to discuss details.
- Want to help? Laura is buying me an adult tricycle for my upcoming birthday so I can get some fresh air, carry my cat stuff to the colony, and not worry about balance. Also, it will be fun.
I have never run a marathon, but I’m assuming I’m around mile 13 and wondering how the fuck I will finish this thing. I hope one more test then a procedure scheduled. Do I want a balloonioplasty or the hardcore surgery? I don’t know. I do know if they tell me I must do the medication route for it to fail and trigger insurance authorization, I am going to scream.
There’s comes a moment when you realize that you have to wrest control of your healthcare from people who don’t actually care about you or see you as a number or a puzzle piece in an insurance braingame. I see that when I bluntly describe myself as a fat queer woman with mental illness to any medical provider and watch them sputter. It is throwing my diminishing weight around if you like.
Now, I need to move onto my next moment.
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