The Journey (Journey Part 3)
While tapping into one of my Facebook support groups for POTS, I kept seeing the acronym EDS everywhere. I finally put up a post and asked "What is EDS? I've never heard of this." Someone quickly responded with a link the the Beighton scale and explained that it was hypermobility in your joints accompanied by chronic pain. I took a quick video, posted it, and asked if it looked like I had EDS (Ehler's Danlos Syndrome). The others in the group said two things: 1 - "If it quacks like a duck...it's probably a duck" and 2 - "Don't do that again! It's bad for your joints". They told me to ask my doctor for a referral to get a diagnosis. During my next appointment with Mary Yellick NP - I asked her about EDS and she knew what it was. I showed her my flexibility and she gave me a referral to a doctor in Madison that specialized in diagnosing EDS and pain management (I can't remember who he was or what his title was).
I waited a month for my appointment, drove an hour and a half to get there, and it was all worth it! I finally had another piece the puzzle. I was diagnosed with Ehler's Danlos Syndrome - Hypermobility type. The doctor wanted to prescribe a bunch of pain medication and I refused (due to slow G.I. issues), the only thing I accepted was a prescription gel medication that I can rub on when I have pain (Voltaren gel).
My specialist and I decided to look into genetic testing to rule out the other types of EDS. I had an appointment set for a few month later in Madison.
*Fast forward to the day of the appointment* My appointment was at 9am in Madison (roughly an hour and a half drive). I had a hard time sleeping the night before, scared to miss my appointment. I woke up early and headed out. When I arrived, the nurses sent me to the waiting room while they looked to see if my insurance approved the appointment. After waiting over an hour, they told me my insurance denied it. I broke down. I was running on very little sleep, had driven over an hour, waited another hour, and wasn't going to be seen. Crying in the waiting room, was not one of my finer moments. Financially, I couldn't afford another trip to Madison or the time off of work. The nurse gave me two $5 gift cards to Subway... and I left.
(Two years later, I still haven't had the genetic testing.)
Back to the journey, I was still having issues my my blood pressure (BP). It's low 90/60 (normal is around 120/80) and leaves me tired and cold. We tried Flornef, not change. We tried Midodrine, no change. After consulting my online support group, I found out that a low dose of adderall could help me. Now I'm on 5mg of adderall twice a day and my BP hovers around 110/70. Relief! At one point my health insurance changed rules and I was unable to get it...and then I changed jobs and lost my health insurance altogether.
Fast forward a year, I have new health insurance and all of my medications are covered :D I still monitor my BP at home and do my best to stick to my medication regimen. Now that I have health insurance again, my doctor and I decided to look deeper into my diagnoses.
My chronic constipation has been one of my larger struggles so we got a referral to a GI Specialist. He looked at my labs (because my specialist draws so many) and found that my Folate levels were high, indicating an overgrowth of bacteria in my stomach/intestines. He decided to put me on a 10 day regimen of Xifaxan. My insurance wouldn't cover it and the discount card brought the cost down to $400 from $1400...still out of my price range. After 5 days of waiting on a prior-authorization, my insurance denied it again. My doctor's office called me and said they had 10 days worth of samples for me to pick up, for FREE!! Yay!
I'm currently on day 7 of the treatment. It seems to be helping to move things along so far. The biggest side effect has been sleepiness, but honestly, that could be from my normal symptoms anyway. The GI specialist said it would take another 2 weeks after I'm done with the medication to see full results (I'll be sure to report back).
I know I'm skipping over quite a bit of my journey and frustrations (there were MANY) but I want to get to the good part - I started 2 in person support groups for EDS and Dysautonomia (One in Milwaukee and the other in Madison).
The Milwaukee group meets twice a month (2nd and 4th Saturday) and the Madison group meets once a month (4th Sunday). I managed to get free meeting spaces that are large enough to accommodate as many people that want to show up. We meet for the FIRST time next week :) I'm excited to finally share a room with people that understand me :D
I'm still figuring the best pain management (because I cannot handle narcotics slowing down my GI) but right now I take Gabapentin every night and Mexloxicam during the day (as needed).
Sorry for how slow I've been at posting lately. I finished my Master's Degree in health communication on Wednesday :D Now it's time to take the next step and see how far I can take my support groups as well. I'm applying to patient experience improvement jobs around the country and I'm hoping to improve the diagnosis process for chronically ill patients. I hope I get to help others like me.
Things I've learned/done:
- I'm almost symptom free while in a dry desert climate. I went there for a week and only needed extra Gatorade to feel normal. I was rested and felt amazing!
- IV clinics exist within most hospitals and can administer saline for when I'm not feeling well. I've only used it once, but it was way faster than an ER visit.
- I had an internship with Mary Yellick NP and created a brochure and patient workbook (I'll upload them)
- Setting clear health goals with my specialist has helped guide our journey for further treatment