Hi.

Welcome to my blog.

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

Upcoming Specialist Appointment

Upcoming Specialist Appointment

I am incredibly lucky to have an amazing Nurse Practitioner (NP) who pretty much serves as my Primary Care Physician (PCP).

She's absolutely amazing and responds quickly to messages I send her through the MyAurora Web portal. I sent her a message on Saturday afternoon (knowing she wouldn't receive it until Monday morning at the earliest) and she responded by Monday at 5pm. Anytime you send a message in MyAurora, it tells you it typically takes at least 2 business days for a provider to respond. I am incredibly lucky that she responds so quickly and fully to my messages. 

I do my best not to bug her, I know she's a very busy person. So I've only sent about 3 messages in the past year (with a list that gets right the point). 

My recent message pretty much went like this:

"Hi ____ !

1. The Xifaxin (I think that's how it's spelled), seems to be working great!! My GI seems to be back on schedule. Is this a regular regimen I will need to be on or a one time thing?

2. I know we talked about a sleep study, and I think it's time (but how do I figure out if its covered by my health insurance?). I've been sleeping a lot and I still feel exhausted. I find myself falling asleep freezing (blankets, robe, hoodie, socks) and a few hours later I wake up sweating...and it usually takes between 30-60 minutes to fall back asleep. I wake up in the late morning, eat breakfast...and find myself falling back asleep until 2pm. Wake up, eat dinner, get some work done, and doze again around 6pm until 8 or 9pm...and then I'm awake until 4am (and repeat the whole pattern the following day)

3. Adderall - paper prescription. I will be refilling the last paper script on Sunday. Can we put another paper script on file with the pharmacy?

4. Silver Ring Splints? Is there an OT that will fit me for them (the last one refused because I was "too young for those")?

I think that's all the things. Thank you ____ for all that you do!!  You rock!"

In her follow up email she answered all of my questions. For the Xifaxan, she told me to get in touch with my GI specialist because some patients are put on regular regimen for it and some aren't. (I sent my GI specialist a short message after I emailed my NP back). My insurance refused to cover Xifaxan the first time around. It would have cost me almost $400 out of pocket for a 10 day regimen (this was after a $1,000 discount card from my GI specialist). There was NO way I could afford that. Thankfully my GI specialist gave me enough samples to cover the 10 day regimen...but I highly doubt I'll get a free monthly sample supply. So if it's a medication I need to take regularly, how on earth am I going to afford it? 

She told me to schedule an appointment so we could discuss the sleep study and Adderall prescription. Adderall prescriptions have a lot of rules to follow and they're always changing...she informed me there was another change recently and we'll discuss my options at my next appointment. She let me know what day was open on her calendar and it was easy to schedule through the MyAurora portal. Luckily it's less than 2 weeks away :) 

She also followed up with an OT about the Silver Ring Splints.

Things I Still Need To Look Into:

  • Getting my prescriptions delivered.
    • Adderall cannot be mailed because of all the rules that surround it (must be signed for upon pick up and they confirm who you are with your driver's license) - so I know that one isn't an option. It's a huge pain to pick up because I have to go to a hospital pharmacy because my dosage is so small (5mg - twice daily) that normal pharmacies (Walgreens, CVS, Walmart, Target, etc.) don't carry it.
      • Why am I on a low dose of Adderall? Well, we tried Flornef and then we tried Midodrine to increase my blood pressure. Neither one worked. Flornef made me so nauseous that I threw up. Midodrine didn't have any side effects but it also didn't increase my blood pressure. We found that a low dose of Adderall helps to increase my BP from 90/60 to about 105/70. 
    • As for my other medications - Zofran (nausea med, as needed), Meloxicam (pain med, as needed), Gabapentin (nightly pain med), and Vitamin D 50,000 IU D2 (once a week) - I need to find out if they can be delivered because it would be one less trip to the pharmacy.
  • Ordering a couple needed pain relief items
    • Theracane (pictured below) - I had access to one in Massage Therapy school (I was a licensed massage therapist long BEFORE my EDS diagnosis - I didn't last long due to the pain I experienced) and recently got to use one again at Physical Therapy. I forgot how incredibly amazing they are and you don't need help to use them.
 There are several uses for Theracane, Including (but not limited to) trigger point pain, back pain, neck pain, leg pain...basically anywhere you shouldn't reach on your own.
  • A new foam roller (pictured below)
    • I will NEVER foam roll my IT Bands [Iliotibial Band Syndrome] EVER AGAIN (pain I cannot describe) but, foam rolling does wonders for my back. Ask your Physical Therapist about what activities could potentially be beneficial for you (or if you should avoid foam rolling). If you're going to purchase one, buy one from the Physical Therapy office, I've found they're much cheaper there and you're getting a quality foam roller. The ones online can be poorly made and you don't know until you receive it. And the ones they sell at sporting goods stores are incredibly overpriced!! 

Those are the next steps in my medical journey. I'll make sure to add an update after my appointment with my specialist. I hope to have some more answers soon :)

Fur Baby Love

Fur Baby Love

EDS Edition - Laughter is the best medicine, right?

EDS Edition - Laughter is the best medicine, right?