School + Exhaustion =/= Much time for writing.
This is going to be a medical post mostly, as a warning to you, my non existant audience. Its been on my mind pretty heavily and I left that on a cliff hanger last time. Not that it was a cliffhanger… It cant be unless I publish the post, right?
Anyways, I didnt get a chance to write about my much anticipated last trip to Denver for my week of appointments, so Ill go through a quick recap.
Monday: Rheumatologist. He was open and honest, thought he couldnt help me since my pain is unexplained to this point. Ordered labs for Lupus and Rheumatoid to be sure, both were negative.
Tuesday: GI consult, Dietician. Had a long talk with Dr. F, and we agreed that things werent working right, decided to watch the vision and headache issues. He noticed my decline and ordered an abdominal ultrasound and Upper GI Barium study with follow through. Dietician, who is one of my favorite doctors, was also concerned. Was down 15 lbs from the last time I saw them. She wanted to try new formulas to see if that would help, planned to switch to EO28 via tube at how ever much I could handle.
Wednesday: Upper and Lower scopes. Despite my worries, I did manage to get cleaned out. Didnt move much that day though, and it took just pushing miralax/gatorade though my tube as much as I could. Scope went quickly, showed furrowing and 10-13 eos per hpf through esophagus, rest of the system looked alright. Took a very long time to wake up, rough time after. I hadnt had anesthesia issues for a long while until that scope. I had a headache, was dizzy, and just felt wrong, and had a crappy nurse who took out my IV immediatly which inhibited my ability to get stronger pain meds. I tried to leave about 2 hours after waking up, but broke down crying while waiting for our car, which is very unlike me, and my mom walked me back inside. Layed in the dark til the Outpatient surgery center was closing, made it home and went back to sleep.
Thursday: Esophageal Manometry, Psychiatrist. Easily the worst test I have experienced. First, it was in the CU adult hospital- scary stuff. It was also the day after my scope, so my throat was wicked sore. Heres the play by play of that one: Nurse walked me back, sat on the stretcher in a closet like room. She got out a tonne (yes, metric) of lidocane and shot it into my nose. It burned so badly, and was so nasty, started gagging at this point. Put another tonne of lube on the manometry tube, which made the whole nasuea thing ten times worse. Then she realized that I was right when I told her that she needed to use the other nostril, the one I had to use for my NG because of scar tissue/inflamation in the other one. No lidocane this time, just gobs of lube. So gross. Where the NG was not at all bad in insertion due to cold water and a not-recently-biopsied-esophagus, this was horrible. The tube is bigger, has a metal bit at the end, and you are only allowed saline water. I started throwing up half way through that. She told me, essentially, to suck it up, so we continued. Finally got it calibrated, but was then told I could only swallow once every 30 seconds, and it had to be with a swallow of her nasty asortment of things, mostly saline. I made it through 3 sips before the wretching was too bad, and we called my mom back. I hadnt had that much anything, let alone saline water, in my stomach for a long time before that. They tried venting my tube while it continued, but it was a no go. We got 3 saline, 5 plain water, and 1 nasty-goo. Apparently the doctor wasnt happy about this (new gi who was supposed to help with the motility issues) and he, to this day, has not called me back, made contact, anything about the tests or my issues. On top of it all? He didnt even listen to my symptoms. I dont have esophageal motility issues worth treating. My issues are stomach and intestines. A while after was the psychiatrist appointment. I have met with him before and like him a lot. The whole thing, though, was him trying to convince me to go on an antidepressant. I had a lot to think about.
Friday: Abdominal Ultrasound and Upper GI with Follow Through. Abdominal Ultrasound was no big deal. Upper GI was more of a process. Luckily, I didnt have to drink the barium, but they did need a lot more than my stomach could handle. They would give me a few syringes, and then have me lie on my left side because I was so nauseated and that helps the stomach empty. They xrayed every 30 minutes for the first three hours, then every 45 for the remainder of the time. The test should have taken 3 hours or so… mine was 5 and a half… and I was lying down, on my left side, the whole time… and they had to use this paddle thing with a ball on the end to push my intestines through my abs. They say my motility isnt off? Weird, right? Anway, it didnt reveal much either.
A week later, we get a call and disucss the situation with Dr. F. He decides that at this time, I should just start the antidepressant and see if that helps decrease symtoms enough to be functional. This is kind of where the current issues begin. I had to get an EKG before I started that.
Current Re-Cap: I got my EKG about two weeks into school. Got it off to Denver, and after a while, I got an email saying there were “non-lethal abnormalities” that were going to be re-examined by a cardio. After many weeks of waiting, they decided it would be okay start if I watched it. Talked to my mom, however, and we decided to get it checked out first, due to a bad family history of heart issues. That appointment is in two weeks.
I also am having issues with my vision. Its not so much blurryness, but more the feeling when you close your eyes and push on them and you get the light show behind your eyelids… thats in the front of my visual field. Weird no? Seeing a second eye doctor in a week. Im guessing it will lead to neuro, though, since my last eye exam didnt look bad (just slight increase in my perscription for close up stuff). Dizziness, headache, and balance/coordination issues might all be working together. Or maybe Im just being over dramatic. I always worry about that…
I see a motility GI in a week, as well. He is new, and I found him through one of the GP facebook support groups. I hope he is good… Im going crazy. Right now, Im alternating between eating the food I should eat (potato, tomato, rice) and being exhausted and losing weight or eat whatever I want and feel horrible, but at least maintain weight. For some reason, I can definitely tolerate more “real food” than my food.. maybe because I like it more, or feel like I need to get all I can while Im cheating… Eos definitely develops unhealthy food habits… but either way, Im not tolerating formula, and neither of my options are healthy.
The last parts are just annoying. No matter what I do, I am totally exhausted. Im sleeping 8+ hours a night, and am barely making it through the day. My energy levels dont change if I take more synthroid, eat more, sleep more… just always exhasution. Its making school really, really difficult, and I seem to be missing a fair amount from that or appointments. My muscles are weaker too. Where I would have used to climbed for a solid 3 hours in the gym, or 10 pitches outside, I max out at an hour inside, maybe 7 routes, or 3 pitches outside, and then my legs are wobbling the whole way down the descent. When did I get so weak?
So thats where things stand now, medically speaking. Ill try to post later tonight about the rest of things, because who wants to read about medical stuff anyway, right? Life isnt all about the medical melodramas I seem to get pulled into (though not as badly as some of my friends), but sometimes its hard to focus on anything else.
“Happiness is different from pleasure. Happiness has something to do with struggling and enduring and accomplishing.” -Sheehan