Thursday, December 19, 2013
I spoke with my sister today and found out she's been having some serious symptoms for the past year and kept being turned away by doctors. (She lives in the small town in WI we grew up in, where the medical staff is decades behind in knowledge and light years behind in listening to patients.) My sister isn't able to be assertive with doctors like I've learned to be. She finally found a doctor to listen to her, and in testing they found not only dysautonomia and a growth on her liver, but a 1 cm tumor in her thyroid. I know there is more she's dealing with, but she's understandably overwhelemed. Her doctor wanted to see me too, and if I can find a way to work it I will because the knowledge I have that links what she's experiencing to the conditions I've already been diagnosed with (EDS, mitochondrial disorder, possibly more) that are genetic disorders which will be in her and can explain what she's dealing with - to a point. So now I need to push some of my specialists harder and see if I can find a way to see my sister's doctor with her to try to help her. What I tell the doctor could make a big difference in her treatment. They also need to understand the EDS complications that could arise during the surgery to remove her thyroid (partial or full) to try to minimize the risks.
I feel horrible for her having to go through this. I was hoping I had gotten the worst of the health problems from out faulty DNA, but my sister was experiencing it and has kept it from me for a year. I am so angry at the world right now for giving her this struggle instead of me. I could handle this so much better than she can. She shouldn't have to go through this! I wish I could take it away from her and put it on myself. I don't care that her and I are totally opposite and can only get along when we're complaining about mom. I don't care that she has been hurtful to me in so many ways for most of my life. So what if she has not cared about or supported me during all the hell I've been living with. We already know I'm screwed and there's not much left for me, so why does she have to go through this too?
Screw the holidays. They never bring anything good.