It's My Party, And I'll Cry If I Want To

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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...

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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. :)

Hangin' out with Snoopy and my amazing friend!

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.

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

Sick and Tired of Being Sick and Tired

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I am SO over this. It's been 5 years, and I am tired of this - excuse my French - shit! I've reached a point where every time I hear something along the lines of "Well you look good!", "POTS isn't a serious thing," "You'll grow out of it, right?" or "I'm tired of hearing about it," I have to restrain myself from getting physical. And I would like to reserve a few very special punches for the "medical professionals" who told me 5 years ago that "nothing was wrong;" that is was just "all in my head and to take some ibuprofen." I am mentally, physically, and emotionally exhausted. I never know when my symptoms are going to come around, or for that matter, WHICH symptoms! I go for days without sleeping more than 6 hours total (thank you, insomnia!), my digestive tract like to act up at the most inopportune times, my chest pain flares randomly, my chest bumps like shoes in a dryer, and now I can't even stand long enough to do my 4-hour shift at work. Thanks to the summer heat, compression stockings are out of the question, and the company I happen to work for refuses to let employees sit down during their shifts... EVEN FOR MEDICAL REASONS!!!! After finishing a particularly tiring and symptomatic shift, I explained the situation to my boss only to be met with "Well, maybe this isn't the right job for you." It was all I could do to hold the tears in until I left. It was like someone punched me in the gut. He might as well have told me this:

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It didn't help when my family told me to "get a real job," that I "don't need that job." Yeah, I would LOVE to get a real job! That's what I'm going to college for. Oh wait... that's right, I'M NOT IN COLLEGE BECAUSE MY BODY SUCKS. So in the meantime, I need a sub-par job to earn money to go back to school. And it's not like I really get to pick and choose which job I take because, in case you haven't noticed, our economy is in the crapper and this was the only job I got. So yes, I kind of DO need this job. 

My gluten free attempt is slipping, working out... what's that? I'm getting rid of my brain-mouth filter. I just don't give a shit. I'm sick and tired of being sick and tired. Say what you will about me, but as aforementioned... I DON'T CARE. Unless they are positive things, which I always appreciate and I may shower you with rainbows and puppies and cupcakes and glitter.  

So I'll be attempting to get through another paltry yet agonizing 4-hour shift tomorrow, then on Thursday I have cardiologist appointment #2 of the year (which should be interesting as my appointment notice lists a different doctor than I have been seeing...). Friday night I've got a staff meeting for work and I don't anticipate sleeping because I have to get up at 3, 3:30 am on Saturday for a Congenital Heart Walk!! Updates to follow...

Just a warning... 

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Thanks for checking in!

Sydney :)

For the Record, POTS Sucks.

*WARNING: Whiny post ahead; Proceed with caution*

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So, if I haven't made myself clear, POTS sucks. Dysautonomia sucks. Heart disease sucks. This post isn't going to win points for positive attitude, but I really couldn't care less. When you've be this sick for this long, it gets old and frustrating REALLY quickly. So here's my little tirade that I desperately need to get out of my system:

Before POTS came along, I was managing my congenital heart defect just fine. The only treatment needed was a pacemaker: I would go to the hospital for a pacemaker check once a year (unless is was replacement time), had phone checks every 3 months, and took no medications. I knew what was ok for my body and what wasn't. I had many respiratory issues when I was younger (bronchitis, croup, pneumonia, and pleurisy), but I always knew when to go to the emergency room. Now, thanks to POTS, things that would have sent me rushing to the hospital before are now normal. When new symptoms crop up, or a weird pain comes along, I usually wait it out until I'm writhing on the floor. And even then I try to wait it out. I haven't been to the ER in over 4 years, and I'm really thinking about going if my body doesn't shape up. I've had terrible insomnia for an entire week, and it happens frequently. My chest pain has been bad. I feel like there's nothing in my chest, or like I'm having an adrenaline rush, but my heart isn't racing and I'm just sitting down. I can't explain it. It happens a lot, but is a completely unique and disturbing sensation - how do you communicate effectively with the doctors if you can't even tell them what's going on? How are they going to understand your symptoms if you can't understand them yourself? My limbs are weak, I wake up with a pounding headache every morning, my heart races with the slightest movement. There is a constant ache around the liver area (and has been there since it became enlarged last year, but with no known cause). I can never seem to get a  full breath, and sometimes I catch myself barely breathing at all. And just a little while ago, this lovely stabbing pain in my left side showed up. 

I know I sound like your grandmother who's always complaining about her health, and I feel bad saying this, but I totally get where she's coming from. Except I'm not even 20 yet. And that's really depressing. What's even more depressing is knowing that there are probably going to be other health issues that arise down the road as a result of the ones I have already collected. Dilated cardiomyopathy (aka heart failure), for example, is associated with heart rhythm issues. Specifically, with congenital complete heart block. Well, I've got the heart block PLUS tachycardia with POTS. Most people with dilated cardiomyopathy eventually require a transplant. We don't even HAVE long-term prognosis data for POTS and Dysautonomia, as we are still struggling to get many medical professionals to accept it as a real illness! So I don't really care if I sound like Maxine from time-to-time. You probably would too. 

This is Maxine, my role model (Source)

On a somewhat unrelated note, I'm trying to go gluten-free. I've heard lots of success stories from chronically-ill people and I want to see if it helps. At this point I don't think I have much to loose. Except I might need to put this sign on my door:

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See? I can be funny and sick and frustrated and upset and confused at the same time. I hope that's normal.... ;)

Hope the rest of your week goes smoothly!

Sydney