Follow up

Yesterday, I had a follow up with my POTS specialist. She was very impressed with the fact that I now have a job; though she kept telling me that the type of job I have isn't exactly the best fit for someone with POTS because I'm on my feet for hours at a time. While I know that, I don't think she exactly understood that it was literally my only option, and I needed the money because POTS has brought me to my last $5. (She's a very nice person, but she's foreign and there's a definite language barrier between us, so I don't think when I tried to explain all of that to her that she really understood just what I was saying. She just kept saying to get a different type of job...if I could do that I wouldn't be working where I am!)

She's going to give me a little more freedom with my medications this time. I was taking midodrine 5mg three times daily, and now she's giving me some leeway to take an extra half or full tablet when I feel I need it. During the last few months of trying the midodrine, it has helped, but I can feel it wearing off. I'll do well for two hours or so and then I feel myself wearing down. So now, when that happens, I can try taking half of a tablet . Another example: If I'm working and I need the extra help, I can take two tablets beforehand. I'm still on a really low dose and I can be taking up to eight full tablets a day. (I wouldn't do that lol but it's good to know that I have some leeway with it.)

While I was there, I also asked if she could recommend a counselor who specializes in chronic illness. It killed me to do it, but the emotional side of dealing with this is overwhelming; especially because no one in my life understands what it's really like. It's hard to hear from schools, teachers, potential employers that you're 'damaged goods'. (Yes, someone actually told me that no one wants to buy a broken item.) Some of my family is trying to work with it, but some refuse to believe it's as bad as it is. They tell me to just get over it and deal with it. Anytime I meet someone and they ask "what do you do" and "are you in school?"...they give me a look of disappointment and distaste because I'm not in school, and I'm not working full time because I'm ill. They see that as 'an excuse'. (Yes, I've been told that too.) It's hard to deal with when I'm already thinking all of those things about myself...it's even harder to hear it from other people; strangers, friends, family and boyfriend's family.

Anyways, she did give me someone's number, and maybe if I can work enough to afford it I'll give it a try.

Beyond that, she's recommending finding another type of job where it's a desk job or something like that. We're going to see how this medication change helps- hopefully it will. She's also wanting me to start exercising- which I've started to do but I should try to do more.

My boyfriend was a bit unhappy with me because he thinks I never tell her how bad it really still is; but that's hard for me. I went through 3 years of doctors blowing me off and telling me to stop complaining; so it's hard to believe I can trust this person and tell her everything that's wrong. I'll do better next time.

Overall, I think it was a pretty positive appointment. Hey, at least she's impressed with me right?