Hi.

Welcome to my blog.

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

Frenulectomy, Road Trip, & Med Issues

Frenulectomy, Road Trip, & Med Issues

Frenulectomy

My frenulectomy was on July 7th (3 weeks ago) and things seem to be healing up well :) Still some random numbness/tingles, but the doctor assured me that should all be better within 6 weeks of the surgery. The nurses, doctors, staff were all great :) They even sent me a card afterwards (guessing it's standard practice but, hey, I felt a little special :). My only complaint, and it's probably just my Reynaud's, I was FREEEZING after surgery. The nurses got me at least a total of 5 'blankets' (paper thin, again not the nurses' fault) warm from the dryer and I was still freezing til I got outside into the 80+ degree weather.

After surgery I was put on a 'soft foods' only diet... I ate more pasta than I'd care to admit or like to do again. Being a vegetarian is hard enough some days, but sheesh, take away about 1/2 the stuff I can eat, not cool...*end rant*. The first two days, I took my pain killers on schedule (stitches on the bottom of your tongue are NO joke). I slept a lot because Vicodin apparently makes me super queezy :/ Week 1 was rough to talk, I sounded like a drunk person because my tongue got tired quickly. And remembering not to try and stick my tongue out because of all the stitches underneath, was quite entertaining. 

Week 2 - All the stitches had fallen out and things started to feel 'normal' again. 

Week 3 - Still some tightness in my tongue and numb/tingles. Again, doc said this was normal - will be better by week 5 or 6. 

Below are the before/after shots of my tongue. And a fun shot of me recovering in the hospital (PS. My mom bought me the bunny for after surgery)

Other Fun Updates

I finally figured out when I'm road tripping to San Diego :D I leave in 2 weeks. The kittens are going to stay with my mom for a month while I'm staying with a friend in San Diego. I'm super sad to leave my kittens behind :'( They're my babies. If you're friends with me on social media, you know how much I love them. This will be the longest I've ever been away from them :( But I need to do this.

I need to job hunt away from Wisconsin for a while. I feel like I've been stuck in a rut here (on the job front) and I'm fortunate enough to have a job that allows me to work remotely. I figure I'll work my current job while looking into other options in San Diego & the surrounding areas. I'm road tripping from Wisconsin to San Diego with a good friend of mine. We're most likely going to make 4 stops before he flies home - Omaha, Nebraska - Denver, Colorado - Somewhere on the western side of Utah - and Las Vegas, Nevada (where he'll fly home from). Should be about 8 hours of driving per day but only 4 hours on the last one.... and then another 4 hours for me to get from Las Vegas to San Diego. I'm excited, nervous, and sad all rolled into one. Excited for an adventure; I've never been to San Diego before. Nervous to let someone else drive my car for at least part of the trip; I NEVER let anyone drive my car. Sad to be leaving my babies behind :'( 

Problem Areas...

Depo Shot Issues

Sooo... let's get back to the medical side of things. I've been having issues on Depo. The reason I went on it is that my periods were ridiculously heavy. Well, that problem was fixed. This is my 2nd round of Depo so I've been on it since about March-ish?

After the first shot, I had my period for the last 2 weeks or so before my next shot. It was light. Nothing awful, just annoying.

This round, I got my 2nd shot on June 8th and have had my period since July 3rd. Not cool. Especially when I'm not due for my next shot until August 22nd. So I called my gyno and the nurse pretty much said "this is normal for a lot of women. Breakthrough bleeding can happen." I responded with..."hey, I hear ya...but this isn't cool. Is there something that can be done?" and the nurse pretty much said "I can leave a message for your doctor but most women just have to wait it out and see how things go after a total of 3 shots." Luckily, my doctor called back, well, her nurse did... and said that my doctor prescribed a 14 day regimen of an estrogen pill to see if we can get things back on track.

Today was day 3 of being on that pill, no major changes yet. Just feel like my POTS symptoms are flaring up :/ Anytime I eat, I don't feel well. It's not nausea (I'm used to that feeling) it's like all my POTS symptoms appear and I feel all the signs I get before I'm going to pass out. Not fun. Hopefully this subsides soon.

Medication & Long Road Trip

Most of my medications I can easily fill at any pharmacy without any issues. My prescription for a low dose of Adderall is a HUGE pain in the ass. Doctors can't put a refill on it. I literally have to go to my specialist every month for a paper script. Luckily my doctor's office is in the hospital where I have to get it filled [and sometimes the nurse will run it down to the pharmacy for me :) I really lucked out with this team]. That's right, my dosage is so LOW that normal pharmacies DON'T carry it. I have to go to a hospital pharmacy. 

Lots of hoops for this script. Paper script every month, had to sign a contract that I wouldn't try to get it elsewhere, and I have to pee in a cup every 6 months or so to prove I'm taking it.

Well, add all those hoops and a month long road trip BEFORE I'll run out of my current script. Trying to get things set up with my specialist and she's super responsive and helpful :) From my understanding, she should be able to write out the 2 paper scripts I'll need with a DO NOT FILL BEFORE xx/xx date and the pharmacy will take care of the rest. Then I'll just have to find a hospital pharmacy in California that will work with my insurance. *fingers crossed* I really hope it isn't an issue.

 

I think that's enough for tonight :) I'll keep you posted while I'm on the road :D

Road Trip to San Diego

Road Trip to San Diego

Doctors, Medications, and $$$

Doctors, Medications, and $$$