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!
Had an AMAZING night at Duke Children’s Prom with my incredible spoonie sisters, Nicole, Em, & Kayla! We’ve been talking online via Instagram & FB support groups for over a year now, but this was the first time we all got to meet up together in person!! It was truly awesome. It was such a blessing to talk, laugh, dance, and just be weird together! Love these beautiful ladies so, so much.. ❤
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!
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!
I have no words to describe what is happening right now. My heart is shattered. I am tired and weary and I feel so very afraid. But God is holding us amidst this chaos, even though His presence isn’t always immediately apparent…
Dr. Kosal is my Biology professor and one of the kindest, most compassionate people I have ever known (more on that later). Unable to leave my dad’s side at the hospital, I missed the final exam. I couldn’t even let her know I was going to miss the exam or why because there are no phones or computers allowed when someone is waiting to be involuntarily committed. It was impossible to sneak considering my dad’s rogue state and my role as a primary caretaker. When I could finally access my phone, I emailed her in a panicked frenzy, apologizing profusely, feeling terrible, and begging for a retroactive ‘incomplete’ in the class. Her response…well…it was a total God thing.
Here’s are some excerpts (6/22/16):
I’m so sorry to read all of this. It sounds like you have been given a heavy load to carry and I know you are physically and emotionally exhausted. I gave you an incomplete for the course already – I knew there was some good reason to not see you…
…So let me know what you think. Take care of your health first, your dad, and then worry about BIO 181. It will be here for you when you can tackle it well. No rush.
Thank you, Lord, for placing people like Dr. Kosal in my life. I do not understand why this is happening, but I know You are here and You are working for our good…somehow…
I am scheduled to take my Medical Terminology final exam today, so doing the procedure without any sedation! Definitely not excited for the procedure (last time was really painful), but l am certainly looking forward to leaving here with a brand new, clean, fully-functioning tube! Trying to study prefixes and suffixes for the exam and not let my nerves get the best of me. Hoping all goes smoothly!
Ever wondered what a J-tube looks like? Well, wonder no longer! This baby gives me all my nutrition and medications. It bypasses my paralyzed stomach and goes straight into my jejunum. But…do you see the problem with this picture?
I’ll give you a hint: in order to get the nutrition, the tube must reside INSIDE your intestine. This little tubie got ripped out when I passed out and fell down the stairs (#DropItLikeItsPots). It’s just been that kind of week. Oh yeah, and by the time anyone decided to do anything about it, the stoma was completely closed and the balloon left inside was infected so turned into a full-out surgery that REALLY knocked my down about ten steps. Ugh…