Gastroscopy Update

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Hey everyone! The upper GI endoscopy is officially done! Luckily, the anesthesia worked great and I didn’t feel a thing until afterwards. They were running behind schedule so I had to wait a while to get into the procedure room, but once I got in there, the rest was easy. I woke up with a bad case of the hiccups, but that didn’t last too long.

The doctor said that the results looked pretty good. She did fix some scar tissue in there (I’m assuming from the acid reflux) and took a biopsy (mostly to check for celiac). The worst after-effect has been that when I ate lunch it hurt quite a bit to swallow food. Drinking hasn’t been too bad though. I grabbed a smoothie and some fruit and veggie juice on the way home, so I’m set for the rest of the night, even if it is hard to eat solid food.

I want to thank all of you for your kind thoughts and prayers for this appointment. I tend to get super anxious about anything I haven’t been through before and hearing your encouraging words and personal stories helps. I’m planning to take the rest of the day easy and just relax or maybe nap.

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Nervous About My First Gastroscopy

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Tomorrow I have my first ever upper gastrointestinal endoscopy scheduled. I’m super nervous about it. My biggest fear is that the anesthesia won’t fully knock me out and I will be conscious during it. I also worry about the possibility of the anesthesia wearing off early and waking up during it. I almost wish it had been done today so it would be over already and the anxiety would be over with.

During the procedure they plan to take a small biopsy to check me for celiac disease since changing to a gluten free diet has seemed to have some positive benefits for me. For one thing, since I switched to a mostly gluten free diet, my iron and vitamin D levels have stabilized for the first time in at least over a decade after always being too low.

The procedure is also being done to check for a hiatal hernia and acid reflux damage. I hope the results won’t be discouraging or worrisome. I also hope the anesthesia won’t make me sick. Prayers and positive energy are most welcome if any of you do that kind of thing!

Another Inflammatory Flare Up and False Hope

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The past few days have been rough. My back went out again, so my upper back and neck have been causing extreme pain again. I think the gluten free diet isn’t really helping much, as all the things I thought it was helping have suddenly flared up the last couple weeks. My GERD has been awful to the point I’ve had trouble swallowing again, the night sweats are back, and I seem to be having a widespread inflammation flare-up again.

I know I shouldn’t have put so much hope on the diet to solve all these issues, but I feel like I’m so desperate for something to make me better that I often put high expectations on each new treatment idea, hoping it will be “the one”. Of course, I probably need to accept that since I have Ehlers Danlos (a genetic connective tissue disorder), that nothing is probably going to be that cure-all I have been hoping to find.

How I wish that there was a cure to whatever is going on inside me. I often long for one of those scanners like they have on Star Trek that could easily pinpoint exactly what is going on and what the treatment should be without being invasive. I guess I was born too early for that. We might be headed that way technologically, but it is probably well off on the horizon.

EEG Update & Going Gluten-Free

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Had my EEG yesterday morning. It wasn’t too bad. The flashing strobe light part was almost kind of like what I imagine doing psychedelic drugs would be like – all the swirling lights and patterns…it was kind of crazy. I was supposed to nap for like 15 minutes or so, but just couldn’t fall asleep. I’m hoping I won’t have to do the home sleep study, but I guess we’ll see what the doctor thinks. The gel they put on my hair to keep the electrodes connected drove me crazy, so I had to come right home and wash it out.

Other than that, not much exciting is going on. I am attempting to embrace a mostly gluten-free diet in hopes that it helps my digestive and chronic inflammatory issues, but it is hard because many of my favorite foods (pasta, pizza, bread, cereal, cookies, etc.) have to be eliminated or replaced with gluten-free substitutes which don’t always taste as good or have the same texture. As an autistic gal, food texture matters A LOT to me and it takes a good long while for me to get used to changes. Thank goodness a few mainstream cereals are already gluten free (like Cheerios, Lucky Charms, most Chex varieties, Fruity/Cocoa Pebbles, and a few more).

My mood today is rather blah. Just not feeling much of anything, except tired.