Tag Archives: dysautonomia

Introducing the BEDS Challenge!

I have to be honest.  It’s been a rough summer.  I spent about half of it stuck inside from the extreme heat, and the pesky POTS diagnosis didn’t help either. I passed the time by watching tons of YouTube videos.  I always enjoy watching YouTube videos made by people in the chronic illness community.  (I can understand some American-accented videos without captions.)  There is this thing in the YouTube world called VEDA, which stands for Vlog Every Day In August.

I have my own channel and I would have loved to participate in VEDA.  But since there is no way I could film, edit, and caption videos every day, I came up with an alternative.  I present to you the BEDS Challenge!  (Blog Every Day In September).  I am in a huge mental and creative rut right now, and typing takes a lot less energy than producing videos, so I am going to do my best to blog every day in September.  I won’t be writing lengthy posts every day, but I will at least pop on here with a photo or a blurb about something random.  I really need to do this for myself.  I need something to focus on and work toward while I recover from this summer and wait not-so-patiently for Service Fido’s arrival.

My first BEDS post will be up on September 1st.  If you want to try the BEDS challenge along with me, then by all means do so!  Hope you’re all doing well!

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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!