It's been a long time since I've updated anything going on with me here. So little had changed for so long that I just lost interest in posting. After all, who wants to read the same thing just on a different day? Snooze.
Since my last post, several things have happened though.
For one, I went to the Cleveland Clinic. I've improved some on my current POTS treatments, but I really wasn't feeling how I wanted to feel. I was still struggling to get up in the morning, having difficulties with nausea and heat intolerance and a whole mess of other things. So, I decided to take my case to another doctor to get another opinion. (For the record: It's not that my doctor here hasn't been wonderful, because she has; I just wanted to know if there were other options out there that might be even better.)
So, in May, two weeks after my last post here, I traveled out of state to visit the CC. I went for two days and was put through a battery of testing. A QSART, hemodynamics, blood volume, heart rate variability, etc etc.
To this day, ten weeks later, I still do not have all of my results; so there isn't too much to update on that front. Only when I get my results will the doctor synthesize all of the information and then come up with a new treatment plan for me.
I went in May in the hopes of starting this new treatment plan long before now so that I would be in a better place to start graduate school in the fall and that's obviously not going to happen. It's frustrating to say the least; but I'm still trying to keep up the hope that it will be worth it once the results come in.
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In other news, I was hired to a new job in June! They were very kind in accommodating my need to sit (they all sit anyways) and I was able to keep water and snacks with me at all times. It was also in an air conditioned setting so my POTS stayed (relatively) under control. I was lucky to land it. (Note to POTSies looking for work: Don't blurt it out in an interview. Stick to the professional aspect only. Once hired, they're required to make reasonable accommodations so bring it up then. Thankfully, for me my accommodations were more than reasonable....If you're like me and feel that's wrong, it isn't. Companies only want to know if you can do the job they'd be hiring you for. If you can, that's all they want to know so leave it at that.)
A couple of weeks ago, I received a call from my grad school offering me a job that would be a great career move and fit in with my course schedule so I took it! Yesterday was my last day at my other job and my coworkers and my boss were incredibly kind. They gave me hugs, bought me flowers and a card all wishing me well; and told me that I'm welcome back at any time. It was bittersweet to leave.
While I was only there for about six weeks, I'm going to miss them. I hope I can stay in touch with a few of them. It was my first real interaction with people in a long, long time and I'm sad to see it come to an end.
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Two weeks ago, my boyfriend and I took a day trip to the 1000 Islands for a family reunion of sorts. It was a long drive, and the heat was hard to tolerate but other than that it was fun.
Except for that one moment where some stranger came up to me and wanted to know why I was wearing compression stockings. She flat out asked me "What's wrong with you?" (Rude! Embarrassing! None of your business lady!)
I replied, as nicely as I could, that I had circulation troubles. Which, is true in a way. While it would have been a great awareness moment, POTS is far too complicated to explain in a brief amount of time to someone who doesn't know you or really care - not to mention that I was embarrassed in front of my whole family and about fifty strangers - so I just left it at that.
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Other than that, there isn't much to share. I'm trying to exercise a couple of times a week, I work hard to keep myself as active as possible and I'm trying to venture out more often. (Although this heat is absolutely brutal for us POTSies!)
I hope all of my fellow POTSies (and everyone else) are doing well ♥
