I am quite lucky to have amazing friends and an amazing husband. Chris has been really concerned with how upset I've been lately and today was an especially hard day. As my appointment with the new doctor looms closer I get more worried, not less. I worry that I'll get the same response I've gotten from 7 doctors in the past, "You definitely need help, but I don't know enough about EDS to be the one to help you." At this point I just need him to approve the surgery and find a surgeon who is familiar with Ehlers-Danlos. As I tend to do when I'm anxious, I've just shut down the past few days. This morning I just lost it and couldn't really articulate why I was so upset. It's very hard to explain what the loss of major body parts is like. I literally am reduced to reading, getting online, or watching TV unless I take my pain killers. Cleaning, playing with the kids, carrying things, even lifting my arms up are nearly impossible. And then someone made a pretty nasty comment to me today and while it didn't bother me that much as I don't think highly of the person anyway, I know it won't be the last time I hear the same comment. That I'm selfish and irresponsible to have kids since I have a genetic disorder. In the state I'm in, yes I would agree. Right now I'm not in a good place but this isn't a state I plan to be in for the rest of my life. There is a treatment, surgery, that I plan to get to correct my wrists and elbow. Will I ever be completely 100%? No, but who is? What family doesn't have health issues? Right now mine are just abnormally bad and we're working on it.
Well, Chris and Kenny decided to surprise me tonight and Kenny took me to Kahns - this delicious Mongolian BBQ restaurant that Chris won't take me to because it doesn't agree with him. I had a surprisingly great time and Kenny and I discussed religion, touched on politics (which is a taboo subject between us as we never see eye to eye), our families, and what we were hoping to do in the future. Kenny is really one of my two best friends, and I love having a guy friend that I'm that close with. I love that he's really good friends with Chris too, and that there is zero jealousy there.
When I got home Chris had cleaned some (!!!) and then we watched "House" before he went to bed and I took a painkiller to finish cleaning as I didn't yesterday.
Tomorrow my other best friend, Sandra, is helping me since Chris is flying. She's taking Anthony to and from school for me. It's not easy for me to ask for help or to let others know that I'm not 100%. It's a pride thing for me. But I am extremely lucky to have an amazing husband, and two very sweet and supportive friends.
You mean it's not normal?
5 years ago
What a stupid thing for someone to say. Glad you're feeling a bit better. Good luck with the new doc. Don't push yourself too hard, though I'm sure it's hard not to at times, for Charlie's sake if not your own. Just keep a long view, things will get better.
ReplyDeleteThat's really unfortunate that some people have nothing better to do then to judge other people and criticise them. I can't stand when people do that. I told you this on facebook but I really do admire your courage and I think it's wonderful how devoted you are to your family. Some mothers don't even have a smidgen of the love and care you have for your family. I think that's amazing. :) Hang in there, I know that you will be able to get some sort of help with your EDS.
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