Do a better follow up on my chronic illness

I’ve done loads of tests, all of them negative. My doc said I was managing fine and to come back in 6 months. My only problem is the exhaustion so she recommended I start exercising more and advised running. I didn’t like it but I think she’s right, running will help me feeling more energetic. :)

I had my fibroscopy yesterday and I’m fine. I think we can definitely rule out celiac’s, since my test for antibodies came back negative as well. However, the whole experience was extremely unpleasant.

I had to stop eating at midnight the day before so that my body would be clean for the exam. The appointment was at 11am so I expected to have hypoglycaemia at some point but I surprisingly could handle perfectly well not to eat before 1pm. I’ve been wondering since then if the fact that I didn’t have dessert in the evening helped and decided to try to cut down the amount of sugar of my daily regime.

Trigger warning for sexual violence

Anyway, I arrived to the hospital with Math and I was quite nervous. Not too much but since of course they were late the anxiety had time to fester a bit. When it was finally my turn, the nurse explained to me that it would be quite unpleasant but not painful, that it would make me gag, that I wouldn’t feel the biopsies and that I would have to swallow it in the beginning and then try really really hard not to swallow at all but drool on the paper towel they’d put under my chin, because swallowing would only increase my discomfort and hurling.

I asked jokingly if it wasn’t too annoying watching people drool all day to the lady doctor but she just said “no”. Okay.

She made me lay on an examination table, put me on my side and introduced a hard plastic device to keep my mouth open and prevent me from biting the tube. She fastened it with an elastic around my head and I thought of the gimp in Pulp Fiction, which was sort of funny for a second, and then not so much.

The lady doctor was doing something with the fibroscope (Cleaning? Calibrating? I couldn’t see since my glasses had been removed), so I could see this black tube with a bring light on the tip, thick like my thumb, and maybe 2 meters long, with numbers on it. I was relieved because I expected something larger on the tip, like the camera, and thought it would be very hard to swallow. Yeah.

The nurse held my head on the side and the doctor put the tube in my mouth, then in my throat where it already made me gag and she said “swallow”. I tried and she pushed the tube and it seemed impossible and it finally went through. I could feel it going down past my throat and tried to stop swallowing my spit but couldn’t and swallowed frantically. I gagged and my eyes started crying. For what seemed forever, she pushed the tube down, and then had to pull it a bit out and push it again and I could feel my throat tight around it. I tried hard to relax but my whole body was tense and I swallowed some more, contracting my throat muscle around the tube each time. Some times I could feel the tube moving inside of me. I could vaguely see the screen next to me, but it was just pink, and I was glad I couldn’t see without my glasses. At some point it seemed difficult for the tube to go further so the doctor thrust, pulled back a bit and pushed in again, pulled and pushed repetitively, tears running on my face while I tried to repress a moan. Then the tube went trough and I hurled. It seemed to never end but the gradations on the tube were down to the lowest numbers. The doctor said (to the nurse, no one talked to me) she was starting to the biopsy and repeated “entering”-”exiting” in a very low robotic voice. I couldn’t feel anything but vague movement in my tummy. I figured she was starting to do the biopsies from the bottom and worked her way up to my throat. She did the entering-exiting things for a few minutes, pulling and pushing the tube between each ones and all of a sudden the tube was out of me.

The nurse gave me some paper to wipe the spit and tears from my face and I asked for some more to blow my nose. I apologized for being so bad at it and swallowing so much but she said I did fine. The doctor said she didn’t see anything wrong during the exam, which felt almost like a disappointment (all this for nothing?). I felt out of it and waited for a couple of minutes to come back to my senses. Then I grabbed my glasses and left. The procedure must have lasted 10 minutes.

Math was waiting for me in the waiting room and asked how it was. I didn’t want to talk because people were waiting to go after me and I didn’t want to scare them. I didn’t really know how I felt either and didn’t want to talk about it. I joked a bit. I was utterly exhausted. I said that I felt like I had been fighting against an octopus with my throat, which seemed like a rather fit description. I got the results (everything clear) and we left in a taxi.

I felt exhausted the rest of the day, and my throat was sore. I slept most of the afternoon. I joked some more about the whole thing when people asked me about it. I had an appointment at work and worked a bit on some orders too. In the evening I felt rather crappy and Math hugged me. I told him I felt like I was just meat and that I was tired of being probed. We went to bed and I slept for a good part of the night. Until I woke up in sweats.

Random images of the Human Centipede and the gimp mixed with the fear that I’d have to do another exam like this or a colonoscopy. And then I remembered the tears. And I remembered the feeling. And I knew why it had been so painful. How it brought back memories of when I was coerced to do things against my will, held down and shoved things in my face. How I cried inside because I had long lost the ability to cry. I had remembered how I felt like I had lost my dignity, my sense of control, my will. How I was just a thing.

The test had triggered feelings that I had managed to bury deep, even though I had come to terms with the facts. And I still can’t understand how a doctor can prescribe such a test and not warn the patient that it can be potentially triggering for abuse victims. It might seem bizarre that I didn’t figure it out myself but I don’t live my life thinking of myself as a former victim and I couldn’t foresee how violent it would feel. Maybe if the nurse or the doctor had spoken to me even just once during the process, or if they had given me a mean to communicate with them if it became unbearable (not that I think I would have used it), maybe I would have felt more like a human being and not just like meat.

Anyway, I’m better, tonight, just very tired. And I’ve had my blood tests back and my cholesterol is just borderline high, but my triglycerides are a bit high. So, less sugar, indeed. I still had a yummy sesame bubble tea after lunch but no sugar for breakfast, and none for dinner.

We’re checking my cholesterol, triglycerides, and some antibodies, among which those for celiac’s, and some other stuff I can’t identify.

I feel spoiled not to have to go to the lab. Although my veins weren’t helpful at all. Sometimes they are easy to spot, and sometimes they just can’t be seen or felt.

The nurse couldn’t find one in my elbow so she tried the one very visible on top of my wrist bone. She said she was sorry because it would be more uncomfortable. And the vein got busted. Ouch!

So back to the elbow! I had made her coffee so she decided we should wait with the tourniquet on. She drank her coffee and tried again. Success!

The nurse apologized for the inconvenience, but she did her best. My veins just aren’t cooperative sometimes. Now I’m waiting for a big bruise to appear on the top of my wrist.

I should wash too but each time I have my blood drawn, I am afraid to leak in the bath during the day. I know I know… ^^

Woke up in sweats this morning after a horrible nightmare. I was with friends from the fetish scene and we were going to attend a fashion show together. Math wasn’t there. I don’t remember the show at all, the only thing I remember is the designer coming to salute the audience in the end and breaking down on stage, curling in a ball, crawling and babbling, drooling and laughing half like a baby half like a madman. It was soul crushing to witness, but only for me apparenlty, since I was teased by my friends for crying. Then we got in their cars to head back, except that there was no room for me anymore apparently, so some took me on their lap to drop me to the nearest road. But before they could do that I started bleeding from the mouth and my teeth started crumbling. Then I got told I was a pain in the ass for being mopey and sick.

And then I woke up. Um.

Math was awake so he hugged me and we talked a bit. It was earlier than I had planned to wake up but we got up together and had breakfast and a bath. Then the taxi was there and we went to the hospital to see the doc who had diagnosed me a year ago (and that I haven’t seen since). It is a military hospital (she moved hospital twice since last year) and there were many people in uniforms there. I felt quite out of place but not hostile towards the military people. I don’t like the military but everyone was relaxed and just doing their thing, and the uniforms are actually quite elegant.

Anyway, the doc wasn’t horrendously late like last time (um, 3 hours, yay), only half an hour. She’s a young woman, short and rather tiny with big curly hair. She’s no nonsense and efficient but still patient, kind and open minded. I was terrified that she would scold me for taking tramadol since last time she didn’t think it was a good idea that i start taking painkillers, and for wearing a corset (which I am not wearing today).

I did the whole recap of what happened to me in a year, health wise, and how everything progressed. She said that tramadol was a good drug. I explicitely asked if she thought it was a bad idea that I was taking it, and she said no, that it was good if it helped. She also said why not about the corset and that if it helped my back it was good, and that she didn’t think it could do any harm and that utlimately I should know better what’s good for me and that she trusted my judgement.

She however doesn’t think celiac is very likely. She said most people have a specacular weight loss with celiacs. I trust her intuitions since she diagnosed Sjögren’s when I have none of the primary symptoms. She still prescribed me a tests to check it out. I have a blood test to check my thryoid, cholesterol and other stuff, and the antibodies for celiacs. I also have a fibroscopy to do with biopsies, so that will tell if my intestine is damaged from celiacs or something else, and to check for other disorders in my guts. She’s inclined to think it might be something else than celiacs so she’s looking for that. I asked not to have a general anaesthesia because the only one I’ve ever had was not a pleasant experience. She said it was not a problem at all, even a good thing not to have one.

I also have an other MRI to do, to check what’s causing my migraines. I think it’s more a precaution than anything since I’ve already had two that were clean.

I have to do an elecromyography of my limbs to see where the bloody pain is coming from. It will show any peculiarity in my muscles and nervous system.

I also will have to see a neurologist for my migraines, a physical theraspist for physical conditioning to help with the pain, and a uro-gyno (at my suggestion) to help with the constant need to pee and lower body pain.

She also said that I have a bit of extra weight that it could explain my high liver enzymes. She recalled I have hypothyroidism though, and I don’t think the issue is really the weight but my crappy diet. So I should watch my cholesterol and triglycerides. (I do not want to lose weight, okay?)

She also said that despite the fact that I probably don’t have celiac’s, if I feel that a gluten-free diet could help, it was a good thing to try and that I could do it from now. So I don’t think I’m going to quit gluten totally but try to lower my intake a lot. I am going to do Weight Watchers again too, not for the weight loss but because a more diverse diet really makes me feel better.

So, we still don’t know what is wrong with me, but I know she’s looking and it feels good to have support from a competent person. I am optimistic (and relieved). I do not mind the ton of exams. They are all painless (the fibroscopy is not nice but not painful either apparently) and to be honest, it feels good to be taken care of and to do something about all this. I’m really gratefull that Math will do all the calling and taking appointments for me though because it is the part that can be overwhelming for a foggy brain.

Edit: Math has already booked the MRI, myothingie, and I’m having the blood test on Friday (at home! beams) and the fibroscopy next week (both test being the most important I think to determine what is wrong). I’m glad I won’t have to wait for months!

To help me out with the follow up appointments, the booking and keeping track of stuff. There is so much to take care of, I have been overwhelmed for a while, burying my head in the sand. It’s not working. He’s going to help me out, which is necessary, I think. I don’t think he minds.