Yesterday, I had another follow up with my POTS specialist. She still seems happy about my progress and doesn't seem to understand my frustrations. After all, I'm doing much better than most people with my condition, so I should be happy!
Given that I'm intending to go to grad school in the fall and may possibly be moving, I'm trying to push her even harder to get me well; or at least better than I am. She's upped my midodrine dose, and I've asked about cardiac rehabs and exercise programs.
Some people get POTS as the result of deconditioning; which is why they are sent for exercise programs to build up their hearts again. Seeing as that's not the case for my POTS, I'm doubtful about an exercise program or cardiac rehab 'curing' me, but I'm willing to give exercise a shot as well as I can. While it may not 'cure' me, I'm sure that increasing my level of fitness is just good for me overall.
She said that they hope to be opening a cardiac rehab here in Buffalo some time in the next few months, and (in the meantime) suggested either a stationary bike, rowing machine or just going for walks. I have neither machine, so the obvious choice is walking.
I'm going to be working on this as my next POTS challenge!
Wednesday, February 15, 2012
Saturday, February 4, 2012
a harsh realization.
Last night, I was reading a fellow POTSie's blog and they were talking about how hurt and angry they were feeling at being so invisible to everyone around them. It really struck a chord with me and made me realize something...
In the two years since my official diagnosis with POTS, not one person has stepped up or approached me about any of it. Half of my family doesn't even know or remember that that's what I have; I found out my grandparents didn't even know I was ill. (Seriously, what the hell.) Only one friend has checked in with me now and then.
Not a single member of my boyfriend's family has made any attempts. It hurts. To them, I look healthy and I come off as standoffish or flaky or rude by not going to their family things when they don't know or care what's really going on. They know about POTS, but not one of them (or my own family) has done any research or even google-d 'POTS' to find out what it is or how it affects me. Not a single attempt at acceptance or understanding.
Instead, what I'm doing and how I am is treated as a disappointment. It's a daily struggle and something that it extremely unfair. I can't adequately put into works how much it hurts.
In the two years since my official diagnosis with POTS, not one person has stepped up or approached me about any of it. Half of my family doesn't even know or remember that that's what I have; I found out my grandparents didn't even know I was ill. (Seriously, what the hell.) Only one friend has checked in with me now and then.
Not a single member of my boyfriend's family has made any attempts. It hurts. To them, I look healthy and I come off as standoffish or flaky or rude by not going to their family things when they don't know or care what's really going on. They know about POTS, but not one of them (or my own family) has done any research or even google-d 'POTS' to find out what it is or how it affects me. Not a single attempt at acceptance or understanding.
Instead, what I'm doing and how I am is treated as a disappointment. It's a daily struggle and something that it extremely unfair. I can't adequately put into works how much it hurts.
check up
I haven't posted in a while because I've been without a computer for over a month- not that that's necessarily a bad thing. Here's what's been going on:
- Last week, I traveled out of state to see my sister graduate; which was taxing on my body but worth it to be there for her. I've spent the last week attempting to recover.
-I read an article saying that the FDA isn't sure whether they'll keep midodrine on the market. Studies that needed to be completed haven't been done, but it's the only drug of it's kind for dysautonomics so the pull out is in limbo. I haven't been super in love with how I'm doing on it, but I don't have an alternative either. This is something I'm going to ask my specialist about when I go next week.
- My POTS has come crawling to a standstill again; even a back slide. Yesterday my heart rate skyrocketed while trying to take a shower, and I had to lay down after twenty minutes of sitting at a computer desk. I am NOT happy. As I'm working on finding a new job, and have applied to grad school I cannot be taking these backwards steps. I'm upset, angry and worried.
- Last week, I traveled out of state to see my sister graduate; which was taxing on my body but worth it to be there for her. I've spent the last week attempting to recover.
-I read an article saying that the FDA isn't sure whether they'll keep midodrine on the market. Studies that needed to be completed haven't been done, but it's the only drug of it's kind for dysautonomics so the pull out is in limbo. I haven't been super in love with how I'm doing on it, but I don't have an alternative either. This is something I'm going to ask my specialist about when I go next week.
- My POTS has come crawling to a standstill again; even a back slide. Yesterday my heart rate skyrocketed while trying to take a shower, and I had to lay down after twenty minutes of sitting at a computer desk. I am NOT happy. As I'm working on finding a new job, and have applied to grad school I cannot be taking these backwards steps. I'm upset, angry and worried.
Subscribe to:
Posts (Atom)