What is POTS?
- POTS is an acronym. POTS = Postural Orthostatic Tachycardia Syndrome
- A type of dysautonomia
- Dysautonomia = dysfunction of the autonomic nervous system
- Characterized by a rise in heart rate by 30 beats per minute (or more) within ten minutes of standing
- or a standing heart rate of 120bpm or more
- Blood pressure can either increase, decrease, or stay the same
- A collection of symptoms that can impact every part of your body
- A life altering condition
- quality of life analogous to congestive heart failure and COPD
- Worth fighting!
Video from Dysautonomia International‘s Facebook Page
Dysautonomia Awareness Month is here!
I am being quite active this year. I don’t think I was even really aware of it last year, or if I was, I was still kind of embarrassed and confused by my diagnosis so I definitely wasn’t as active and excited about it. But this year, oh my goodness! If you are following me on Facebook or Instagram, or both, you have probably been quite surprised in the uptick of my postings and the sheer amount of turquoise.
By the way, dysautonomia’s official awareness color is turquoise! And, if you also weren’t aware, that is one of my favorite colors and has been for years now, so it’s an awesome coincidence and just makes this even better!!!! ALL THE TURQUOISE! *cough sputter* Sorry about that.
Today, Dysautonomia International shared an article to their Facebook about nausea and vomiting, and how the two don’t always go hand in hand and how they tied to the nervous system. The text that accompanied D.I.’s post points out that nausea is a common symptom for dysautonomia patients.
As many of you know, I have been suffering with chronic nausea for years. Lately, it’s been so bad that, at times, I struggle to eat. That’s actually part of why my GI decided to do the colonoscopy. As of my last appointment, he didn’t believe I had primary gastroparesis, but he did say I definitely have what is called “delayed gastric emptying” which is caused by my whole system running slow so it tells my stomach to stop working. Very similar, but different causes. He is thinking he might do more testing though, later, just to be sure.
I am wondering if the reason my nausea is so bad is because it has multiple causes?
Anyway, I found the article extremely interesting and really wanted to share:
Today is the first day in a VERY long time that I haven’t had a migraine by this time (5pm). I have been suffering from nearly daily migraines for weeks, and denying it. Denying it with excuses: “I’m on my period, I’ve always gotten them every day of my period week” (pretty much true), “my allergies are just really bad, so it must be a crazy sinus headache” (obviously, I like lying to myself as well as Dan), “I’m tired,” “I have eyestrain,” “I can cope,” etc. However, after my back seized up and my pain went out of control, I couldn’t deny them anymore. I finally called Dr K (the neurologist that had given me the medication that is supposed to be stopping my headaches and controlling my pain) and left a message with his medical assistant. Hopefully, I’ll hear back and either be able to get in with another appointment or be told to raise the dosage and the headaches will stop. I forgot to mention the side effects on the message though, ugh. I didn’t realize that until I was typing this out.
This video is a very short and beautiful way of describing the difference between empathy and sympathy. Empathy is important and how we connect with people. Empathy is what everyone needs, what everyone wants. Learn empathy. Practice empathy. Foster connection. Foster love.
I found a pretty and comfortable looking tee shirt! (It says it’s made out of very soft materials.) I’m thinking it’ll probably be great for lounging around the house in the summer.
What kinds of merchandise do you think will work well with this design? I have a basic sweatshirt and now this tee.
What other illnesses/conditions do you think I should make this design for? (Example: “Official Uniform of the Fibromyalgia Warrior”)
I was clicking around Zazzle trying to figure out some new products that I wanted to make, and was struck with a rather silly idea:
People with dysautonomia often do not have the ability to wear what they used to or necessarily want to. Many of us are forced to choose comfort over any sort of style.
This idea ultimately led to these:
What do you think?!
See other shirts
I went to see a high-risk obstetrician today for a preconception consultation. I AM NOT PREGNANT!!! ⇐ Just needed to throw that on there so people wouldn’t freak out 😛
Why did I go see the high-risk OB? Because of my POTS.
Someday, and someday hopefully fairly soon, I want to be a mother. To me, this is not an optional part of my life. I have wanted to be a mother more than anything for as long as I can remember. I would play house with my friends, and always be the mother (or father, since I was so tall). The only thing I know for sure that I need for myself out of this life is to be a mother and loving wife.
Skiing and POTS… Weird combination. I’ll have to go into more detail later, as my phone is horrible for posts… But I had a lot of fun once I was able to get going, and did a LOT better than I expected.
I can’t believe 2015 is already almost over!!!! There are 3ish hours left, and a few minutes (number will continue to change until I publish, so no point haha).
Let’s take a quick look back at my year, if my brain fog will let me.