Some Major Battle Victories in the War on POTS

Here in the South, young people are (usually) taught to respect their elders. My parents reared me that way, and I have always tried to show it. But recently, I have found great difficulty in holding my tongue when it comes to disbelief of my illness. Specifically, when older people express disbelief. A few elderly gentlemen in my life have found themselves close to encountering a full-blown cat fight over it. Southern ladies are also taught to not start fights, but we sure as hell are allowed to finish them. So that's what I did.

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Now, I love my grandparents. They have always done so much for us, and they are just awesome. But my grandfather is one of those men who thinks the only excuse for a sick day is if something is broken or bleeding profusely. So when I left college, he didn't quite get the memo that it was for health reasons. I LOOK healthy; why should I need to leave school? I was accused of goofing off, wasting time, and not knowing what to do with my life. Keep in mind that I am still pursuing my dream of becoming a pediatric cardiologist, which I've had since the age of 4. Keep in mind also that I am taking online courses which are all medically-oriented. You can imagine my dismay, utter shock, and raw anger upon hearing these accusations over a family breakfast one morning. When he first started talking my face probably looked like this:

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But after I realized that my arguments were going nowhere and he just kept repeating himself, that little pickax called "Guilt" started to chip away at my soul (read about Guilt and Chronic Illness here). Doubt of whether or not I was taking necessary time off crept in and I felt like I was just being a lazy loafer. I excused myself to the ladies' room and had myself a small meltdown. That was 2 months ago. 

Yesterday, my grandparents came over for Easter dinner. After the festivities, we were all lounging around in the living room when my grandfather started in on another lecture of how concerned he and my grandmother were for my future and how he didn't want me wasting my time. Being in a slightly better mood than the last time one of these impromptu lectures occurred, I quickly whipped out my best pre-medical student voice and every simplified, lay-person analogy in my repertoire for POTS. I calmly explained what was going on inside my body, that there was no way to know when or even if it would go away, and that I am still intent on becoming a physician. This seemed to placate him and, after answering a few of his questions, I brought him some information about Dysautonomia and POTS. He skimmed the list of symptoms (which took up an entire page) and nothing more was said about my "time-wasting" tendencies. SCORE! This, my friends, is a major win in the Dysautonomia world!

That was not an easy win, but it was only one person. Church, on the other hand, is like fighting a small army of people who have all decided that I left school to sit at home all day and eat Bon-Bons when in actuality, I left to be able to take classes on my own time, exercise when I am able without having to go anywhere, and to be able to follow doctor's orders 24/7. Fighting this myth is made even more difficult when you attend a small Methodist church - composed mostly of older, retired people - in a small Southern town, where people's opinions of you become rumors, which circulate like wildfire (you would think they would have been over that after high school, but I guess they need something to occupy their time). 

Two gentlemen in my church have approached me recently, and every Sunday it seems like I am faced with some sort of verbal attack on my life choices. The first incident was by a kind man who had donated his old golf clubs to me, and had even taken me out on the course to play 9 holes once. The particular Sunday that he chose to lecture me was kind of a bad POTSy day, and I just wasn't having any nonsense. He told me that I "can do anything I put my mind to," and I needed to get back to school. I explained why I left and that a career in medicine was looking kind of iffy. Instead of dropping it, or even giving me some cliche`platitude like most people would, he said, "Well, sometimes interests and goals have to change." I was about fit to be tied. I explained through semi-gritted teeth that I've wanted to be a doctor since the age of 4. He repeated what he said about goals needing to change. I stared at him and  mumbled something about him not getting it. Do you think he stopped there? Of course not! He hugged me a little too tightly and mentioned another golf outing when the weather got warmer. I shrugged him off and explained that an impromptu round of golf wasn't going to be possible for a while due to the highly unpredictable nature of my illness and of the possibility of passing out. That was really a stupid thing to say, as he obviously didn't get it the first time. He responded with an "Oh, you won't pass out." At that moment, the world stopped for a moment.Anger exploded inside of me. I could only stand there staring at him with my mouth hanging open stupidly, trying to comprehend the mind-numbing ignorance. Repressing the urge to be physically violent, I simply stomped away, shaking my head in my own state of disbelief. Win for remaining semi-civil! 

Another man who seems rather fond of criticizing me sits right behind my family during service. He happens to be a heart patient himself, and we've been friendly for many years. Last Sunday was the first time we had problems. Boyfriend was here visiting from Minnesota, and he ended up having to hold me back by the end of the conversation with this gentleman. He, like the others before, felt a compelling need to tell me that he didn't want me “wasting my life.” However, the fact that he prefaced the conversation with, “Well, since the doctors don’t know what’s going on, maybe it is all in your head” ignited a fuse that has only been lit a few times in my life. That is exactly what was said, verbatim. With the anger I felt combined with my hypoxia, I can't even remember what I said to him. I probably just blubbered like an idiot. A few kisses and hugs calmed me down and I finally pushed a brochure about Dysautonomia into his hands and left. Nothing more has been said about my supposed "delinquency," so I'm putting that one in the "Win" column as well. 

In addition to battling the cynical and dismissive people in my life, I have been winning a more impressive battle. Recently I was able to come off of my Midodrine!! Midodrine is a commonly used medication with Dysautonomia patients for raising blood pressure, and it was actually causing my BP to be too high. Yay? Still a victory! Also, my symptoms have much improved and I have been able to complete some work outs and neighborhood walks!! Bonus! On the downside, however, the results from my last 24-hour heart monitor showed nothing significant, so I’m still stuck wondering what is causing the weird heart beats. I’m going to see my new pacemaker doctor, who works with my POTS cardiologist, on Thursday, so hopefully they will have some insight and not just think I’m making it up/ crazy. I've caught these arrhythmias on pacemaker interrogations and blood pressure machines, so I know there's something there. We shall see...

Happy Belated Easter! :)
Sydney