Lots has gone down since my last post, and I'll try to recount everything accurately for you (thanks, brain fog). This is the 4th time I'm attempting to write this post, and I WILL finish this one! Yesterday (Sunday) was the worst I've felt in quite a long time, and it also happened to be my birthday. POTS doesn't care. So hopefully I'll be able to do something cool today, in an effort to give POTS the middle finger. But in all likelihood, that will mean writing this post, giving the dog a bath, and *hopefully* taking a walk. Only time will tell. Here is the day-by-day, blow-by-blow account of the last 4 days:
Thursday: Thursday I had an appointment with a cardiologist (POTS, not pacemaker). However, it was not with the doctor who I normally see, because apparently my regular doctor was in Russia. As soon as I opened the appointment notice over a month ago and saw that it was with a different doctor, I became anxious. Most people with POTS/ Dysautonomia can tell you how stressful it is to see someone other than the doctor who treats you, simply because you sort of have to "rebuild" the whole patient/ physician relationship. You have to learn their personality, tell them everything that you've spent years on with the other doctor, and deal with a whole new perspective on your condition. It's stressful.
I know doctors can have "eccentric" personalities, and I'm usually a bit taken aback at some of their initial remarks. But I almost smacked this guy after the first 5 minutes. My mother was telling him something, and he had the nerve to interrupt her and say, "C-can you just wait? You're interrupting my train of thought." Who does that? A doctor once told me to be quiet because he wanted to talk to my mother and not me... needless to say, I am no longer in his care.
As the appointment progressed, we actually got on quite well, and I discovered that we share a very similar sense of humor. After he finished up the exam, he wanted to meet with me in the conference room. My stomach fell. Being asked into the conference room is never a good sign, but when he followed his request with "We need to have a long conversation," I almost freaked (internally, of course). But I managed to hold myself together until the end of our meeting. Basically, he told me that after 5 years, "I should be better, and need to have an external motivator to get better"... What the hell?? I almost lost it. I've met people who have been sick for MUCH longer than 5 years, and they've literally tried everything. Guess what?!? THEY'RE STILL SICK. Sure, maybe if I got POTS after a temporary thing like a viral illness or an injury, but as far as I can tell, I didn't have either of those things before becoming symptomatic. An external motivator? Oops, sorry. I thought following orders, trying to get back to school to become a physician, and desperately clinging to what semblance of a social life I have was motivation enough, but apparently not. And speaking of "not enough," he also had the nerve to tell me that the recumbent biking, yoga, and ab exercises I've been doing aren't "good enough." Why? Because I need to do at least 30 minutes of exercise everyday in an upright position... Uhh, NEWSFLASH!! The entire effing definition of orthostatic intolerance, a hallmark of POTS, is that being upright causes fainting!! I had to learn that the hard way when, while DOING upright exercise like walking and running, I almost got hit by cars/ passed out in the road several times!! I walk and/ or run whenever I am well enough to do so. And typically, after a week or so of feeling great and doing my exercise everyday, I will suddenly be unable to walk down the hall to the bathroom. If I've been attempting his special exercise program for 5 years and I'm still not better, I'm guessing POTS isn't going anywhere anytime soon.
He also recommended that I start seeing other specialists and told me to take salt tablets. I'm not planning on adding any more doctors to my list any time soon, so you can call me non-compliant in that regard. I've been told for a while now to do the salt tablets, but am very hesitant and can't find them ANYWHERE in the area. So maybe I'll take them, maybe not. Either way, I left his office in tears and in a rage. I felt like I was back to square one - dealing with a doctor who is blaming me for my problems, for still being sick. All I can say is, I better not be assigned to him again.
Precisely the reason why "upright exercise" and I don't jive anymore...
Friday: Moped around the house, still angry with the doctor's verdict. I did attend a staff meeting for the theater I work at that evening, so at least I did something...
Saturday: THIRD ANNUAL CENTRAL VIRGINIA CONGENITAL HEART WALK!!!!!! I've been involved with the Congenital Heart Walks since they began in 2009, and have attended 5 so far. It's. My. Jam. I woke up at 3:30 am for it, and it was totally worth it. My childhood friend joined me, and I have to say, she worked her butt off helping us. I love this gal! Doctors, nurses, CHD survivors, parents of "heart kids" and angels, friends, and family all gathered to support Congenital Heart Defect research and awareness. Simply amazing! I even ran most of the "walk," so I consider it an all-around successful day. :)
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| Hangin' out with Snoopy and my amazing friend! |
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| Some of the fantastic walkers |
Sunday: My birthday was Sunday, but POTS didn't care. AT ALL. Literally everything hurt, including my skin. Going to church was a bit of an ordeal, and I spent the entire day trying not to throw up/ pass out. I have to say, I haven't felt that bad in quite a while. C'est la vie. Needless to say, the festivities are on hold.
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| This is what is known as "venous prominence." Basically, you're seeing the veins popping out because all my blood is pooling in them... Happy Birthday to me!
*Phew*... This post took me 3 days to write... That's brain fog for ya. I'm sure I forgot to include some things.
Thanks for checking in again!
For all my POTSie friends, hope y'all are having a symptom-minimal day!
It was my party, and I cried because I wanted to... and because everything hurt.
- Sydney
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