Hey! It's been a couple of weeks since my last post. Sometimes I feel like a need not to write; I can almost pretend that life is normal, pretend that all is good and pretend that what Anna is going through is a distant memory. Of course, that's not true, but sometimes living in a world of denial, even though short lived, can be refreshing!
I think one of the weirdest things about having a child with a chronic illness is that life goes on. It has to go on, but sometimes it just kind of jumps out at me like flashing neon lights. When I see other kids playing sports, or making teams, or just living and I think wow!! I took that for granted not too long ago. I used to complain about how busy we were driving here and there for different games and now I would do anything to be doing that. At the beginning of her illness, so many people asked about her and asked about us, but now it is just a part of our lives and that doesn't happen as much anymore. I sometimes wonder if people just think she's doing ok or if life goes on and we re just expected to move along with things too? I don't know? Maybe it's because when people do see her, Anna is having a really good day. If she wasn't, she would be at home in bed! I guess people don't see the down and dirty, ugly side of dysautonomia that plays such a huge part of our lives. I sometimes wonder if people think we're crazy!!! If you see Anna on her good days, she looks like a million bucks!! I know that people care...I know that they care a lot....like I said, it's just one of those weird things!
Since my last post, Anna had a drs appointment with our family physician. He suggested that we may want to consider switching the beta blocker that she is on. At the appointment, we decided to keep things as they are, but since discussing it further with Anna, I think we might go for the switch! With her current beta blocker, it will be really hard for Anna to increase her exercise...we are hoping with a new medication, maybe she will be able to be more active! In some ways, I am terrified to try something new. On the other hand though, I always have this faint hope that maybe, just maybe, something that we will try will miraculously cure her!!!
We have also decided to stop the acupuncture treatment. It was making her feel so sick and we weren't seeing enough improvement for me to keep putting her through it. It kind of felt like another roadblock; another attempt at something to try to help Anna, and another failure. I know that we can't give up though, and we will continue looking for alternate treatments!
We also discovered that Calgary has opened up a clinic for dysautonomia/POTS patients! I am super excited about this! I told our family dr about it and hopefully we will get a referral to go there!!! It would be amazing to go to a clinic where drs specialize in this and are actively researching!!!