Loosely Connected:Life with Ehlers-Danlos Syndrome

09/01/2022

I generally like to take a break from as many appointments as I can while the kids are on break! This means I’ve got A LOT of catching up to do next month. 😞

Infusions have been going well minus me getting a little queasy about the poke. We’ve increased my dose a by half and it made a big difference! I’m still at one day per week with the increase and it takes about 3-4 hours per treatment. The goal here is to increase my blood volume and blood pressure to reduce POTS symptoms like fainting upon standing, blood pooling in feet and legs, sleepiness, and fatigue.

I decided to try Botox injections for my jaw for TMJ which feels ahhhh-mazing…but it’s already wearing off and I don’t think the already high dose was enough. Every needle poke into the area beside my temple made a loud sound breaking through the fascia and it sounded exactly like cracking a glow stick! 🤢 But, it didn’t hurt at all!

11/19/2020

😞

11/18/2020

Update: I don’t have any definitive information from my recent trip to Cleveland Clinic, yet. I do have access to about half of my test results that posted to the portal and two flagged as abnormal or out of standard range through cardiology. I’d rather wait for the doctor to interpret these results than go digging online for answers because the data is extensive and it’s best I don’t draw my own conclusions. I will update when I know more.

11/16/2020

I can FINALLY eat today and I’m EATING! Silver lining... Cleveland has a yasssss and Christmas cookie milkshake is ahhhhmazing. My heart and belly are sooo happy 😊
@ Shake Shack

11/16/2020

This pandemic is making all of this way more difficult than it should be. Checked out of the hotel without power still. I can’t begin my next round of testing through Cardiology because “multiple departments are waiting” for pending COVID test results from Friday testing. So I wait. Fingers crossed they can process it on the fly in Rochester by 12:30pm. Everyone is doing their best during trying times. But I’m hungry and I just want to go home.
@ Cleveland Clinic

11/16/2020

Power went out at the hotel literally minutes after we got here, but we made it safely.

11/13/2020

11/11/2020

This is my new medical alert necklace from ! It’s a little smaller than I wanted but it’s dainty and cute (and highly informative for when I drop to the ground again, lol) so not terrible for everyday wear!

@ Rochester, NY

11/11/2020

My body hates me. Quick(ish) trip for IV antibiotics before the long drive this weekend.

Side note: My favorite “updo face mask” came undone at the seam in the hospital and I despise sewing. 😩😩😩😩😩😩

This is Ehlers-Danlos Sydrome. This is Dysautonomia.

11/10/2020

A well-rounded bedtime snack, every night.

Less than a week until my next visit at . I’m really hoping to eliminate the need for some of these meds.

10/30/2020

I’m not exactly sure how long I’ve had this on my ankle but it’s been at least 4 years. Doesn’t bode well with compression socks. This “little deal” feels like another round of defeat.

10/28/2020

I got 99 problems but Nuun ain’t one.