I had a visit with my specialist yesterday. We discussed a lot of things, including recent testing that I've had done and how I've been feeling.
When I told her that I felt I was having a lot of setbacks lately, her opinion was that it's probably from doing a job that is not exactly a good choice for someone with POTS. I'm constantly on my feet for hours at a time and I have a lot of bending and standing to do as well- none of which adds up to a great job for someone with dysautonomia. Right now, the job I have is my only option. It took me a very long time to get it, and I'm lucky to have it. So, even if it would be best for my health to leave it, I'm not going to do that. After all, how am I supposed to afford my medications if I'm not working at all? I'm not fortunate (or unfortunate, depending on your point of view) enough to receive any kind of aid, so not working isn't an option.
She is impressed, for lack of better word, that I am working as much as I am. Working 8-12 hours a week is a big deal for someone with my condition. While she's happy with that, I obviously am not. I can't work enough to support myself living with my family with minimal expenses and it feels like I will never be able to work enough to save money and move out. While my family doesn't exactly appreciate my illness for what it is, or it's severity, I'm lucky that I can still live at home. There's no way I could move out or support myself. It's...heartbreaking to be so reliant on someone else. It's even more upsetting because I'm in my mid twenties. I should be out exploring the world, living on my own, working, going to school, etc...and instead I'm penniless and living at home.
Yes, I've made some strides. I can run errands. I can work a four hour shift. (Although, to be honest, I tolerate it very poorly.) While these are great things, it's far from enough. I'm coming to terms with the fact that my life will probably never be what it used to be before POTS, and my health may never be what I want it to be...but there has to be more than this. I can't live a life like this.
***
My doctor and I discussed how I'm handling having a chronic, disabling illness, and she asked me if I felt I was depressed. I've always been very wary of that word. Depression seems like something that is so overdiagnosed and that most doctors just want to throw pills at. That is not what I want, or want to have associated with me. My last general doctor (not specialist) thought all of my symptoms were just anxiety and depression and wanted me to take pills.
(They were wrong, I had POTS.)
I think, considering everything that I'm dealing with on a daily basis, I'm doing fairly well. At least, I thought so until she starting asking me about my sleeping habits, how often I cry or get overwhelmed, and what my support system is like. Answering her questions, I almost broke down right in the office.
I was told that it's normal to feel depressed about all of this. After all, POTS completely changed the course of my life and I struggle against it constantly. Some days are tolerable, but some are completely unbearable.
It's difficult to be exhausted from the simplest of tasks and I'm frustrated by my lack of progress. It's hard to watch the people I was friends with, or my family members, go on with their lives while it feels like I'm trapped no matter how hard I try. It's extremely hard having to explain my condition over and over, or worse- complete lack of empathy or even an attempt at empathy from people I come into contact with. Hearing all of the "you don't look sick" and "what do you do all day?" comments.
On top that, there's the lack of awareness and understanding from most medical professionals. (I can't even count the number of doctor' I've had to inform about POTS...shouldn't it be the other way around?)
Who wouldn't be unhappy?
My boyfriend was there and he feels it's a bit more serious that I let on, and he said so. Based on what she asked me, I sounded like I was depressed, or becoming depressed, from fighting POTS. I cry pretty frequently, I rarely sleep, and I'm having a hard time dealing with the fairly constant criticism (for lack of better word) that I have to put up with. I'm also lonely from the isolation.
I may try to find someone to talk to who specializes in chronic illness. (I tried before, but the person my specialist recommended wasn't accepting patients and couldn't recommend anyone else who deals with chronic illness.)
***
After that, we decided to up my midrodrine to 7.5mg three times a day (on top of my florinef) because I'm tolerating it well and there's a lot of play room for dosages before we would try switching to something else.
I'm also going to be having a brain MRI. Last week I lost a fairly large portion of my vision temporarily and she thinks it was an migraine with aura. She's not overly concerned but it's something I've never had before and it would be better to be safe and make sure that is what it was. Plus, over the last few months I've noticed an almost constant aching and stiffness on the right side of my body; and trouble focusing with my right eye. She gave me an in-office neurological test and wants me to have the scan just to be sure. (and it would give us a 'base' point for comparison in case I would start developing anything else.) I was nervous when I couldn't do one of the tests though (walking backwards), and she asked me to repeat holding my fingers up together twice.
She also suggested I seek out a rheumatologist for my recurrent purple hand.
(I never posted the result of that, so to make a VERY long story short: I had a lot of cardio testing and there's a mild stenosis in my arteries but not severe enough to be causing my hand to change colors.)
I'm also to ask about Ehler's Danlos Syndrome, which is common with people who have POTS. I'm hoping the person my cardio/vascular specialist recommended is familiar with EDS and would be able to diagnose it if I have it. He's almost two hours away, so it would be good to know if he's capable of diagnosing EDS before I would even make an appointment.
***
Overall, I guess it was okay. She's pleased with my progress- though I'm obviously not. What can I say- I'm impatient. I am not thrilled about more testing, and another possible condition to deal with but I know that checking for them is doing due diligence. At least I have a doctor now who wants to be thorough, so I can't complain too much. Better to be taken seriously than blown off like I have been in the past.
All I can do is what I've been doing: getting up every morning and trying as best I can.
