Monthly Archives: July 2016

POTS Diagnosis and Holes In The Health Care System

As I mentioned briefly in my last post, I was recently diagnosed with POTS.  POTS stands for Postural Orthostatic Tachycardia Syndrome.  It’s a form of dysautonomia, which is an umbrella term for diseases that affect the autonomic nervous system.  POTS is fairly common in people with fibromyalgia.  There is so much I want to say about all this but I’m exhausted and my brain is full of cotton balls at the moment, so this might end up being relatively short.

Out of all the fibro-induced diagnoses I’ve received in the past year and a half, POTS is definitely the most frustrating.  I have to constantly drink electrolyte solution and eat tons of salty snacks just to be able to move around a little bit each day.  Recently it’s been discovered that people with dysautonomia often have extremely low blood volume, and therefore patients could see improvement with partial or whole blood transfusions as well as supplemental oxygen.  (Because of the low blood volume, many people with dysautonomia don’t get adequate oxygen dispersed evenly throughout their whole body.  My limbs will actually turn blue and breathing gets extremely difficult if I don’t take my medication.)

The problem is the science is far ahead of the insurance companies at this point.  Most insurance companies aren’t willing to cover transfusions for people who have normal blood counts, or oxygen for people whose O2 levels aren’t dangerously low.  I’ve been asked if this is the doctors’ fault, and it’s not.  Doctors do not determine how much a treatment or medication costs.  Insurance companies make that decision.  I am beyond frustrated with the American health care system right now.  Medical care should cost a fraction of what people are currently paying.  People living in one of the richest countries in the world should not be going into debt for their medical care.

As for my personal POTS treatment plan, that’s a little up in the air right now, because of the insurance crap.  My daily POTS med is inexpensive and actually does something, so I will definitely keep taking it.  I’ll be seeing a cardiologist in August.  I also plan to see if Mayo Clinic is currently doing any research studies on medications or treatments, since it’s close enough that I could be there and back in a day if need be.  Research studies are free for participants and sometimes you even get a stipend.  At first I was extremely hesitant to talk about all this, but then I decided that if it helps even one person, it will be well worth it!


Still Alive and Kicking!

Hey everyone, I wanted to let you know that I’m still alive and kicking! (Literally, seeing as I have Restless Leg Syndrome! :p)

It’s been a rough couple of weeks on my end.  My neck of the woods is at the tail end of a 14+ day heat wave, on top of receiving a diagnosis of POTS. (Postural Orthostatic Tachycardia Syndrome.)  My POTS diagnosis really needs a post unto itself, but I probably won’t get around to that quite away.  Once the heat wave ends, I really need to catch up on all the cleaning and organizing that I was going to do right before my body and the weather decided I needed to be allergic to gravity on top of everything else!

I was going to hold off on writing any more posts until I was up for writing about my POTS diagnosis in more detail.  But I realized that I really miss blogging.  Then I realized that every time I think about blogging, I think about that line from the movie “Julie and Julia” where Julie says, “I could do a blog!  I have thoughts!”

Here are some of my thoughts at the moment:

1.) I love purple pens

2.) I wish I could wear deep purple without looking dead.

3) Spirituality can be complicated.  Bloomin’ complicated.  Effing complicated.  Blooming effing complicated!  Anyone who says they have all their spiritual crap together has probably been smoking something.

4.) I just watched a documentary about Legos.  Yes, you read that right.  Said documentary is awesome and you need to see it.  And we all need to build with Legos.

5.)  Legos are cathartic and health insurance should cover all the Legos I want.

6.)  There is a major dried mango disappearance epidemic in my house.  I suspect foul play.  If my previous cat was still alive I would accuse her in a heartbeat.  She was beyond diabolical and could have totally gotten in the cupboards if she wanted to.  Okay, so maybe it’s more of a dried mango addiction than a disappearance problem.  But dried mango is a much better addiction than some.  (If someone made me go to Mangoholics Anonymous, I would totally eat dried mango slices during the meetings.  Just saying.)

Okay, I’m getting major brain fog and have the concentration of lime Jell-o, so I’m going to call it a blog post and keep daydreaming about all the Legos I want.  Hope everyone is doing well and staying cool!