This post is going to be full of whiny-ass TMI and cussing. So you don’t have to read it. Not that I have a big following anyway. This is mostly a place for me to vent, for me to structure thoughts and arguments in a longer format than a facebook post, for me to store and share tips and recipes and things that my friends ask me for. So you don’t have to read this; I just have to post it.
I have a doctor’s appointment tomorrow morning. And I don’t want to go.
I didn’t even want to make the appointment. I’ve put off making this appointment for a long time, years maybe. Because I think I know what’s going to happen.
I’m going to go in and whine to the doctor, and complain about how terrible I feel. The doctor is going to say, “Oh, no! We can fix that. We’ll just run some tests to confirm the treatment first.”
Then the tests will come back perfectly normal, and nobody will ever call me back.
And I’ll still feel like shit.
Maybe the doctor will even panic or follow some panicky protocol and say, “Oh my God, you need to go to the hospital right now and be admitted for tests!” And I’ll have to completely upend my life, eat shitty hospital food and be denied my treats, all to hear the same results. Tests are normal, you look perfectly healthy.
And I’ll still feel like shit.
I’ve tried for a long time to figure out what’s wrong with me. I’m still fairly convinced it’s the location, but there’s nothing I can do about it. I tried seeing doctors when we lived in Washington, D.C. I had irritable bowels, I had days where I was so tired I just couldn’t get out of bed, days when my skin was so sensitive it was like having a sunburn and even a breath of wind hurt. I ended up with a chronic fatigue diagnosis, which is a nice way of saying fuck off, because I didn’t have pain at enough fibro trigger points.
The only time I ever registered abnormal on a test was the blood tests for PCOS. Even then, I had to go through a nice round of “shut up and just do what we say” and had my lovely year of being ignored in 1999 before a doctor actually gave me the medication that fixed it.
I tried seeing doctors when I started getting sick again after moving to Michigan. I had diarrhea that would go away when I went back to Texas for a visit. (Incidentally, so did one of my kids, location-specificity included.) I would get random numbness and tingling in my feet. I had headaches. I would feel like I had the flu or had been hit by a truck. I would feel like I needed to stretch my insides, all my insides, inside my face, inside my joints, everything needed to be stretched and rubbed and squeezed constantly. I ended up with a fibromyalgia diagnosis. Another way of saying fuck off.
In D.C., I gave stool samples, took blood tests. I’d go in for terrible headaches, and something would fix them once but not the next time. I’d go in because I had so much trouble swallowing I was choking and couldn’t eat anything solid for weeks, and I’d be left sitting in waiting rooms, sent home with antidepressants, whatever.
Because there’s nothing clinically wrong with me, so I need to shut up and fuck off. Kind of like when I went into labor with the triplets, but the machines didn’t pick up the contractions, so I must not be in labor, here’s some sedatives so I’ll shut up and go away.
In Michigan, they seemed to try to pay more attention. I’ve had MRIs for multiple sclerosis, nerve conduction tests, full in-patient cardiac workups, and so many blood tests you can see tracks on my arms. Everything always comes back normal.
They put me on Topamax once to try and dull the fibro pain. It didn’t make all the pain go away, but it did take away my ability to feel things like carbonation, so all the soda tasted flat, and I didn’t want to eat anything because I had absolutely no appetite, no sense of being hungry. I stopped taking it when we went on vacation later that year because I wanted to enjoy my food, and I felt fantastic while we were gone.
They put me on Cymbalta once, the year before I had Kender. My mother said later she was scared for me because I seemed like I had no emotion anymore, but I didn’t notice any difference in myself. I cared so little I put the kids into the government schools for a semester. I sweated like a pig all the time, all day every day, soaked through everything. When I started developing a tremor on top of everything else, I stopped taking it.
I still have the tremor.
After I had Kender, I developed costochondritis for the first time, but because I said “chest pain” I ended up in the hospital for two days with my newborn, getting cardiac tests and eating shitty food with no coffee. They said I had the healthiest heart they’d ever seen.
So I just don’t mention chest pain anymore.
My current rheumatologist diagnosed me with hypermobility syndrome and spina bifida occulta but says she can’t put EDS on my chart without a genetic test that she won’t order, so as far as every other doctor is concerned it’s just another fuck off, they’ll just keep ignoring me like the anesthesiologist ignored me and let my anesthesia completely wear off in the middle of a c-section. (And the dentist wonders why I won’t let her take out the rest of my wisdom teeth.) She runs blood tests on me every 6-12 months looking for markers. She ran a ton of them a couple of months ago when I showed her my new dermatographia and the ulcer I’d worn inside of my nose from sneezing and blowing my nose so much every damn morning. She looked for all the inflammatory markers, c-diff and IgE and Sjogren’s markers and I don’t know what all.
All normal. Never even called me to follow-up. Fuck off.
I’ve tried a bit on my own with diet. I’ve tried going gluten free, wheat free, dairy free, once even corn and soy and peanut free, tried the specific carbohydrate diet, bought a raw milk share, made my own yogurt. Not much help. The only thing that consistently makes the diarrhea go away is leaving the state.
I’ve done exercise, gotten to the point I was running 30+ miles a week and training for a marathon, until feeling like I had two sprained ankles stopped it. I haven’t done much besides strength training since then. Running was so easy, just head out the door. Everything else takes so much more time, more planning, more equipment.
I know I’ve gained weight. I’ll probably get to hear about it tomorrow. Thing is, I started gaining weight while I was running and doing strength training and eating gluten-free. Nothing but weight gain, more and more. The last time my scale broke, I declined to replace it. What’s the point? If diet and exercise make me gain weight, I really don’t want to pay attention to it anymore.
Then there’s the ulcer I’ve had for the last year and a half, probably caused by all the ibuprofen I was talking while I tried to avoid my sprained ankles and keep running. The pain from that has to ratchet up to intolerable levels before I think to take another round of Prilosec, because the constant chronic pain from other sources makes a background noise that’s hard to penetrate. People without chronic pain don’t understand how that works.
So why am I going in tomorrow? My typical day starts like this: I get out of bed, make the bed, and head for the bathroom. Sometime between getting out of bed and getting upstairs (it never starts in bed, I have to wake up first), I start sneezing. I’ll probably sneeze 10 or 15 times, until snot is running down my face. My bowels will turn on, too, and I’ll be having diarrhea while I’m sneezing. I’ll sneeze, blow my nose, and be in and out of the bathroom for at least an hour. The rest of the day, I can breathe through my nose, except for random times when I’ll start sneezing again. Or maybe it will be coughing, I’ll feel like I’m actually itching inside my lungs and start coughing uncontrollably. Either way, I’m going to pee myself, because all the constant coughing and sneezing over the last six months has completely finished destroying my pelvic floor. I’ll have diarrhea 3-5 more times, too. Most of the day I feel like I’m being impaled through my ass.
Yesterday, I started bleeding from it.
So fine. I’ll go in to the doctor. But I don’t want to go. I don’t want to try and explain all of this again. I don’t want to take more tests and see them come back normal. I’d rather just sit here and be miserable, than go in, complain about being miserable, and get another fuck off. I’m just tired of it.
I don’t want to go.
I’m sorry that you’re going through all of this and not getting any real help from doctors. It’s frustrating to tell them over and over again just to have them dole out tests and bullshit plans to get rid of you for a while. I hope you find the right specialist to take you seriously and get you the help you need.
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