Having a lot of GI testing done lately. I got my gastric emptying study out of the way Thursday. Esophageal manometry & 24-hour esophageal pH test tomorrow. Not particularly looking forward to either, especially since we have to travel to Wake Forest Baptist yet again (1.5+ hours). Apparently we have to drive all the way back early Tuesday morning so they can remove the esophageal pH tube..?!?! I find it ridiculous to travel just for them to yank it out, but alas that’s the rule…
Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…
I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.
I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.
My urologist reassured me today that I am doing nothing wrong to cause these problems.
These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.
As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.
On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤
It’s been two years today since I had my gallbladder surgically removed! Two years free from crippling gallbladder ‘attacks’ that knocked me to the floor. It’s a nice thing to reflect on, because with that one surgery, I was CURED of what the pathologists deemed chronic cholecystitis. I wish all my illnesses and health woes had such easy fixes!
May is Ehlers-Danlos Syndromes Awareness Month! I plan to put together an awareness video eventually…but in the meantime, here’s a sneak peak at some weird EDS hand movements. Notice how my hand almost looks like it’s turned inside out? That ‘flying swan’ hand position is like our EDS gang sign.. 😉
Had a good appointment at the Duke Syncope & Dysautonomia Clinic today! Being honest with doctors is not something that comes easy to me, but I think I did pretty well today. My blood pressure readings are looking MUCH better than they have in months prior! That is likely due to super high doses of Midodrine, & Fludrocortisone, as well as 12mg of Prednisone daily…but it is a good thing regardless. They were concerned with my heart rate, though. Despite taking all my Dysautonomia meds (including Bystolic, my beta blocker) & getting IV infusions, I am still experiencing significant tachycardia, especially upon postural changes. My orthostatic vitals today, for example: 113bpm lying down, 129bpm sitting up, 147bpm standing. Now, those numbers aren’t terrible…I’ve definitely seen worse, this week alone! But Jenn was not happy with those numbers & said that kind of increase upon sitting/standing is not good considering the medications should be taking care of those dramatic spikes. She was also a bit concerned because that was simply standing still, not trying to walk and carry on about the day. We agreed that the Bystolic is not the right med for me as it drops my blood pressure too low (causing me to need more Midodrine which I already take an overdose of each day)…so she is putting me on a new med called Ivabradine. I’m really excited because Ivabradine helps lower heart rate without impacting blood pressure! Only problem is it’s a med generally used for heart failure patients, so we will probably have to fight with insurance to get it covered. But Jenn says she’s confident we’ll win the case, considering I’ve tried almost every other beta blocker out there and my symptoms are so severe! Really hoping it is a quick process getting it approved, as I am super excited to try…especially because, once we finally get my heart rate under control, I get to begin physical therapy! Jenn referred me today to a PT who is familiar with Ehlers-Danlos Syndrome & POTS! Nicole sees him and really likes him. Apparently, he understands the pain, dislocations, fatigue, weakness, etc. that comes with EDS & how to best work with/through such symptoms. Really looking forward to it! Also while Mom & I were at Duke, we met a fellow Zebra who was using a wheelchair with SmartDrive. We ended up talking with her about it (& other things) for a good 15 minutes, and on the way home from the hospital, mom decided we will have a fundraiser because I need one, too! More on that later.. 🙂 Now for a nap– that appointment left me exhausted!
As the cliche goes– low quality picture, high quality friend 👌🏼💜 I love every minute I get to spend with this beautiful, strong girl!!
I have been SO sick these past few days. My mast cells are kicking my butt big time, & I’ve had to use three EpiPens in the past 19 hours alone. I really should stop complaining & appreciate that life isn’t like this every day…but the pain & nausea is crippling & all I can think about is how I want it all to just end…
Well, I am supposed to take an Anatomy & Physiology exam in 4 hours & 9 minutes…but that’s not happening. 😦
My health is much more stable than it has been in years past: I really have no right to complain. But things have declined since last semester & I feel so lousy 24/7 with dizziness, vertigo, nausea, migraines, joint pain, abdominal pain & distention, sharp pins & needles in my fingers, chest tightness, ulceration & bleeding in/around my stoma, feeding tube troubles, anaphylaxis, temperature regulation issues, bladder inflammation, UTIs, blood pooling, weakness, etc. etc. etc.
Academically, I am drowning. Studying for this test, I’ve watched videos, made flashcards, drawn pictures, constructed diagrams, read the textbook, took online quizzes– but NOTHING is sticking. My fatigue has been crippling & my brain fog has been worse than ever before. I am SO burnt out from fighting so hard to accomplish tasks most my age don’t even have to think twice about.
And the most frustrating part of all?
Being sick, taking a billion medications & supplements, doctors appointments, procedures– all keep me from giving 100% in school.
And then, on the other hand…
Being in school, going to classes, doing homework, studying, going to necessary meetings– all keep me from giving 100% to taking care of my health.
It is definitely a catch-22!
Anyway, tonight I made some big decisions about this semester & about my academic endeavors as a whole. I have a meeting with my advisor tomorrow, so we shall see. I am hoping to leave that meeting with a plan & some hope for the future…
Getting a new J tube today at Duke Raleigh! This time, they are going to sedate me– hallelujah. I have second-degree burns around my stoma (from bile), granulation tissue and ulceration around/inside of the tract. Plus PTSD from previous changes…yikes. Here’s to hoping the sedation…well…sedates me!
This evening, I finally got to meet my beautiful, sweet, strong spoonie sister Nicole! We’ve ‘followed’ each other & talked online for almost two years now, but we never got to meet in person despite living only a half hour away. She is INCREDIBLE– truly one of the most beautiful souls I’ve ever met. She endures so much each & every day, yet somehow manages to find joy through it all. She is a superhero! She’s been a huge encouragement to me throughout this crazy chronic illness journey. My heart is so full after getting to hug her in person! We literally just hung out on her couch for like three hours, talking, laughing & commiserating about anything & everything. We could just BE- the good, the bad & the ugly- without having to explain ourselves or wear a fake smile. We both needed this so much. I’m beyond excited for our future spoonie adventures! Love this girl SO stinkin much!