So I took a ton of photos at Zion National Park. Here are a few of my favorites:
Category Archives: Dysautonomia
New-ish Diagnoses
These diagnoses aren’t new, actually, but I just found out about them. These two new-ish diagnoses are joint hypermobility syndrome (I will often shorten it to JHS) and inappropriate sinus tachycardia (IST).
Joint hypermobility syndrome, which I wrote a little about in the Writing 101 assignment Why Do I Write?. I have always been very flexible, but for some reason having a name makes things make more sense. Dr Spencer thinks it is possible I might have Ehler-Danlos, but the genetic testing is expensive and it wouldn’t change any of my treatments anyway. JHS is a congenital condition that just makes all of my joints extra loose.
It’s Giving Tuesday
I hadn’t even heard of Giving Tuesday until today… apparently, I’ve been living under a rock? I think I just have difficulty keeping track of which “named” days get added onto this specific part of the season…
Anyway, Giving Tuesday makes me feel much better about the world than the others. One invisible illness blogger I read regularly, Let’s Feel Better by Ilana, also works for the Global Genes Project. She wrote about the work they do and some of the non-profits they work with!
Check out Ilana’s Giving Tuesday post!
Featured in Ilana’s post: Dysautonomia International, Jeffery Modell Foundation, EB Research Partner (EB is the “butterfly” condition)
First Road Trip With POTS – Short Thoughts
This has been my first road trip since my POTS diagnosis, and it has been a learning experience. I’ll write more about it later, but here are some quick points.
- You will be too hot and too cold… Sometimes at the same time.
- You are going to get crazy dizzy because road trips are dehydrating
- Clothing is obnoxious
- Fast food and soda are simultaneously awesome and evil
- Bladders are tiny
- There is no such thing as being over prepared
In September, while my mom was here, we went driving to look at some fall color! We ended up on Mt Evans. Both Dan and I were quite impressed that my mom could get out of the car and walk around up there!!! There are people who live in Denver (5280 ft above sea level), and have their whole life, that cannot walk around at 14,000 feet above sea level. My mom is from only 1700 feet elevation, AND has adult onset asthma! Go Mom! Here are some fun pictures from there:
Mt Evans – from September
Working Medication, Not Working Insurance
Got a call from Dr J’s (cardiologist) office earlier today. Apparently, my insurance rejected the medication that is actually working. Ugh! Luckily, though, they have samples available for me. They also said that they are going to try to work something out with the rep (I’m guessing the one that leaves them samples) for some sort of patient assistance thing. At least they recognize that it’s very important for me to be on this medication. Hopefully, the medication will let me do cardiac therapy on my own and heal enough that I don’t need it for too long.
Medication is Actually Working?!?!
You know you have POTS when you get overly excited by your standing heart rate being 80bpm… And the medical assistant does too! Blood pressure was also down to 112/72 for once! Yay!
I am currently taking Corlanor and Bystolic for my heart. I am not a doctor, please consult your’s before changing any medication… especially before changing heart medication.
Natural Therapy
Oh man, do I miss hiking. Dan and I used to go hiking all the time. We both used to go hiking all the time long before we met each other.
For me, nature was always a kind of natural medicine. I’ve struggled with depression for most of my life, but being out in nature… well, that was a different story. Hiking out into the trees, getting away from people, getting away from cars, getting away from noise, it always calmed my soul down. I love the smell of pine trees, especially in the cool air, and the sound they make when the wind blows through them. It really is amazing how fast it can work. I have gone hiking because I was angry, because I was sad, just because I felt the need to, and it is almost always immediate. The second I’m into nature, I start to feel a change. Everything in my body relaxes. My breathing slows and deepens. My brain actually shuts off and focuses for once. I feel relaxed and happy.
The Ear Saga Continues -&- Crazy Allergies -&- Functional Medication
So, as I mentioned earlier: I have another ear infection. Yes, another one. Yes, the same ear that was just operated on. Yes, the same ear that has pretty much been non-stop infected since mid-March. Yes, I’m about to rip it off and throw it out the door and make it fend for itself.
October Update: Post-op, Chronics, Life
I had my post-op on October 6th, so a while ago now. Oh wow, time flies. I’m sorry I haven’t had a chance to update those of you that have been reading all of the surgery updates, school has been extremely time consuming (more on that later).
Finding Life's Silver Sun 