Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Doctors, Medications, and $$$

Doctors, Medications, and $$$


It's been a while since I've had the time to make a post. A lot has changed, mostly for the better. 

Xifaxan Update

Surprise insurance denied it, again. My gastroenterologist doesn't have any samples left and I cannot afford roughly $600 for a 10 day regimen (and that's with a $1,000 discount card from the company). They have a prescription on file with my pharmacy for a general antibiotic but I really don't want to go that route - a general antibiotic means I run the risk of having to deal with a yeast infection thank you. I'll pass for now. 


Silver Ring Splints

I now have my right thumb silver ring splint. It is beautiful and works perfectly! :D I haven't received the bill yet or the EOB (explanation of benefits) from my insurance company...pretty sure it's not going to be covered :/ I have an appointment to pick up my left thumb ring and middle finger sprints (they're called EDS splints if you're looking them up on the website). Since the splints most likely won't be covered, my OT's office will put me on a payment plan. The receptionist at my OT's office was actually the one to recommend that I get all the splints that I need and that the hospital will work with me on a payment plan - that it was more important to get what I need than to worry about cost. Rumor has it (heard this from a friend, not sure if there's truth to it), that as long as you pay at least $1 toward your medical bills every month, they can't send you to collections...hmmmm. At least I have a worst case scenario option when it comes to the $1,000 I'll owe for these rings by the time I'm done with the set...


Sleep Study

Well, from what my doctor sent to me, it looks like nothing remarkable. Just that I snore but I do not have sleep apnea. The sleep specialist recommended the possibility of a mouth guard to keep me from snoring. Which I'm assuming my insurance won't cover (and I'd honestly never wear) - so we're back to the drawing board about why I get so tired during the daytime and am wide awake late at night.


  ENT - Frenulectomy and Ear Issues

Well, this turned into multiple appointments. The first was about my ears and water getting trapped in them (causing pain and discomfort) - my ENT's recommendations were to use 50/50 mix of vinegar and rubbing alcohol or use a blow dryer 8 inches from my ear immediately after showering to dry out the ear. She found no wax in my ear or anything that would trap the water, just that my ear canals have a slightly deeper angle than most (which could explain the trapped water). She had to refer me to another ENT about the frenulectomy because she isn't a surgeon (she is a PA).  

I met with another ENT that is a surgeon - and he felt that the reasoning for my frenulectomy was justified and gave me a couple different options for surgery. 

Option 1 - numb the frenulum (tight thing under my tongue) and clip it in the office. After care would be to push the freshly cut frenulum with a Q-tip multiple times a day to prevent the incision flaps from from reattaching... 

Option 2 - go to a surgery center for a 15 - 30 minute Z-plasty procedure where they cut the frenulum and then sew it to the underside of my tongue in a Z pattern, no risk of it reattaching and no need for me to deal with a Q-tip. Needless to say, I opted for Option 2 (less hassle and better overall results - more length to how far I'll be able to stick out my tongue).  

I selected my option... only to find out my doctor was moving to another city and leaving his practice to his colleague. I waited a few days for a phone call from his colleague and now have a surgery appointment setup for the beginning of July.


 Cardiologist Update

I do NOT need a pacemaker :D Wooooo! Since it has been so long since my last full syncope episode (passing out), I'm not at risk for frequently passing out, and a defibrillator wouldn't help with my main issue - my BP bottoming out. Also, we will NOT be repeating my tilt table test either :D Amazing news on both!! YAY!!! PHEW! Relief :)



I still need to talk to my neurologist about the 'heat circles' and the possibility of them being ocular migraines or if they're nothing at all (I just haven't had an appointment with her yet). 

Life Updates

So the reason for my major delay in posts :/ I moved home for the time being. As you may know, I graduated with my master's degree in the middle of March so I decided while I'm searching for my career, to move in with my mom. The last two weeks of May were filled with packing, moving, and cleaning. I sold everything that I could and gave away what I couldn't. I no longer own a bed, couch, desk, or any furniture (other than a couple end tables). I have everything I need for the kitchen though :) Now that I live with her, I don't feel as guilty leaving my kittens (they're cats but they'll always be kittens to me) because they have company. I've been able to attend a job fair, a couple of interviews, and other events without feeling bad about leaving my cats at home.

I've made some amazing connections and managed to pick up a part time job that I can work from home :) I'm currently in the city for training and then I'll be working remotely :) I'm excited to get started. Today was the first day of training and everyone I've met on the team is Awesome! :)

Still waiting to hear back about a few other potential positions for patient experience positions across the country. Keep sending positive vibes this way, it's working :D

Frenulectomy, Road Trip, & Med Issues

Frenulectomy, Road Trip, & Med Issues

Future Appointments and a Medication Issue

Future Appointments and a Medication Issue