Health Activist Writer's Month Challenge 2012

Through a fellow POTSy, I found out about the Health Activist Writer's Month Challenge hosted by WEGO Health. Each day there are prompts and I'll be writing a post a day through it for the entire month of April. (I'm starting a little later, but I'll catch up!) Hopefully this will add a new dimension to the POTS community!

If you're interested, you can get the prompts/sign up as well here: Health Activist Writer's Month Challenge.

Blissful exhaustion.

Just about two weeks ago now, I was flat on my back exhausted. Now, I'm exhausted often as fatigue is something that's annoyingly constant with my POTS. However, this was a different kind of worn out. This was the blissful I-just-accomplished-something-extraordinary kind of exhausted. The best kind.

What had I done to feel this way? I'll tell you!

The week leading up to this flop out, I took a trip. Not just any trip either; a four thousand mile long, cross country road trip. From New York, to Texas, to Louisiana, to South Carolina and back again. It took six 10+ hour days and we drove through fifteen different states- thirty percent of the country- but I made it. I did it. Me. A girl with POTS who three years ago could barely get out of bed and who showered every other day and only when she could scrape up enough energy.

I'm not going to lie and say that it was smooth sailing. I had POTS attacks and episodes. I had to be vigilant about my medications and wear compression stockings all day every day. Almost every night, I felt extremely ill. I had to push through a lot, with the help of my boyfriend.

But, I did more than survive it; I thrived. I was able to see new areas of the country that I'd dreamed about visiting before my illness, and that I thought I'd never be able to see. I saw crop dusting in Alabama and the plains of Texas (gorgeous). I ate beignets in New Orleans. I also met up with some of my family in Myrtle Beach and visited the beach for the first time in years. I played mini golf and went out to eat in a restaurant- something else that I've been unable to do for so long that I can't even remember the last time.

The reason we went was to scope out the grad schools that I've been accepted to. Will I pick any of them? I don't know; but, even if I don't, the trip was worth it in so many other ways and I'm so glad that I was able to accomplish going.

I'm still recovering from the stress and strain on my body, but I'm relishing every ache and pain.

World News Response

Most of the POTS community knows that last night on World News with Diane Sawyer, they discussed astronauts and their connection to those with POTS. (We originally heard a rumor they were going to discuss "Grinch Syndrome", an ugly nickname for a small section of POTSies; thankfully our pro-active attempts prevented that!)

While I understand the segment was to show how connections can be made through various studies, I (and most of the POTS community) found the segment made us uneasy. There were several inaccuracies that ruffled our feathers. ABC News only allows feedback up to 500 characters to be sent to them, so I'm going to send them this snail mail copy:

Dear Diane Sawyer and ABC News,

While we appreciate you not using 'Grinch Syndrome' in your mention of POTS, there were an incredible number of items I/ we feel need to be corrected as they were not correct and misrepresent POTS and the people who have it:

1. POTS is not a heart condition. It is a form of dysautonomia or autonomic nervous system dysfunction/ failure that affects not only the heart, but every system in the body.
2. Only a very small subset of POTSies have a smaller than average heart. Very few. Most of us have normal size hearts.
3. Only a very small subset of POTSies acquired POTS from being deconditioned. Most of us were active, fully functional, vital human beings prior to POTS. Myself included, thank you.
4. The study on astronauts included a mere 18 patients. Their results are nowhere near typical for the rest of us. Of course exercise 'cured' them, their hearts shrunk from lack of work/gravity. FYI 99% of us aren't astronauts...
5. There is no cure for POTS. Period. Exercise can help those who are able to do it, but can be hazardous to the health of those who can't. Exercise does NOT cure a nervous system dysfunction. If it did, diseases like MS and Parkinson's would be eradicated. At best, exercise can help minimize symptoms. If exercise is missed, POTS flares up again. Several specialists agree that it is in no way, shape or form a cure. The underlying condition is still there. (Also the idea that POTS is fatal but exercise can cure it is beyond a misrepresentation of facts.)

I really wish you would have interviewed actual POTS specialists, not those with tangential connections to the condition, as well as patients, and that you would have checked your facts before disseminating false information to the public. This is why there are so many hurdles with diagnosis, treatment and understanding. Items like this don't help us raise awareness or help our teachers, doctors, friends and family members to understand our condition. Please, check your facts, do interviews with the right people and make corrections to help bring proper exposure to POTS and those who suffer from it. The quality of our lives literally depends on it.

Thank you,

A disappointed (and slightly offended) POTSie.

Follow up

Yesterday, I had another follow up with my POTS specialist. She still seems happy about my progress and doesn't seem to understand my frustrations. After all, I'm doing much better than most people with my condition, so I should be happy!

Given that I'm intending to go to grad school in the fall and may possibly be moving, I'm trying to push her even harder to get me well; or at least better than I am. She's upped my midodrine dose, and I've asked about cardiac rehabs and exercise programs.

Some people get POTS as the result of deconditioning; which is why they are sent for exercise programs to build up their hearts again. Seeing as that's not the case for my POTS, I'm doubtful about an exercise program or cardiac rehab 'curing' me, but I'm willing to give exercise a shot as well as I can. While it may not 'cure' me, I'm sure that increasing my level of fitness is just good for me overall.

She said that they hope to be opening a cardiac rehab here in Buffalo some time in the next few months, and (in the meantime) suggested either a stationary bike, rowing machine or just going for walks. I have neither machine, so the obvious choice is walking.

I'm going to be working on this as my next POTS challenge!

a harsh realization.

Last night, I was reading a fellow POTSie's blog and they were talking about how hurt and angry they were feeling at being so invisible to everyone around them. It really struck a chord with me and made me realize something...

In the two years since my official diagnosis with POTS, not one person has stepped up or approached me about any of it. Half of my family doesn't even know or remember that that's what I have; I found out my grandparents didn't even know I was ill. (Seriously, what the hell.) Only one friend has checked in with me now and then.

Not a single member of my boyfriend's family has made any attempts. It hurts. To them, I look healthy and I come off as standoffish or flaky or rude by not going to their family things when they don't know or care what's really going on. They know about POTS, but not one of them (or my own family) has done any research or even google-d 'POTS' to find out what it is or how it affects me. Not a single attempt at acceptance or understanding.

Instead, what I'm doing and how I am is treated as a disappointment. It's a daily struggle and something that it extremely unfair. I can't adequately put into works how much it hurts.

check up

I haven't posted in a while because I've been without a computer for over a month- not that that's necessarily a bad thing. Here's what's been going on:

- Last week, I traveled out of state to see my sister graduate; which was taxing on my body but worth it to be there for her. I've spent the last week attempting to recover.

-I read an article saying that the FDA isn't sure whether they'll keep midodrine on the market. Studies that needed to be completed haven't been done, but it's the only drug of it's kind for dysautonomics so the pull out is in limbo. I haven't been super in love with how I'm doing on it, but I don't have an alternative either. This is something I'm going to ask my specialist about when I go next week.

- My POTS has come crawling to a standstill again; even a back slide. Yesterday my heart rate skyrocketed while trying to take a shower, and I had to lay down after twenty minutes of sitting at a computer desk. I am NOT happy. As I'm working on finding a new job, and have applied to grad school I cannot be taking these backwards steps. I'm upset, angry and worried.

It's been a while...

I haven't updated in close to a month, and now it's 2012- holy cow!

Here's what's been going on:

* I met with my POTS specialist recently. She feels I’m doing so well that she’s putting me on ‘maintenance’. To her, working a few hours a week and doing nothing else is enough for me. Seeing as I can’t do enough to live on my own and support myself, I’m frustrated and don’t think I should be in ‘maintenance mode’ yet. But, that will be something to bring up at my next appointment. (She ushered me out incredibly fast yesterday because she was behind schedule. I’m a bit miffed about the whole thing.)

* I've been seeing a vascular specialist, over an hour away, to try and find the cause of my recurrent purple hand and foot. For no apparent rhyme or reason, my hand and/or foot will turn purple. It started almost a year ago, and happens several times a day regardless of temperature, or anything known to aggravate it. I had many, many tests that revealed some startling things, but that were inconclusive as to why this keeps happening. After everything, what was concluded is that I have something called Primary Acrocyanosis. Which is just a fancy term that says parts of me turn blue with no apparent cause. I have no underlying vascular or cardiac problems (like lupus) and the blue-ness tends to happen on it's own. Basically, my blood vessels spasm and parts of me turn purple. While some POTSies have secondary acrocyanosis (AC in relation to having an underlying disease), as I've had POTS for several years now and this is relatively recent, mine seems to have occurred on it's own. I spent hundreds of dollars, and put an insane amount of stress on my body to find out that I have yet another rare (PAC is extremely rare), incurable condition.

***

On the positive side:

* I handled the holidays very well. My POTS was kind to me and I was able to attend two family functions for a short time. I was also able to eat- something that is difficult for me given my constant nausea. I'm very grateful for that.