Remember my awful, fear-inducing trip to the nephrologist’s last week? It really shook me, hearing that the one thing that is giving me any sort of quality of life back may indeed fuck me over royally in the future. That was very frightening, and it made me feel like I had nowhere to turn, and no good choice of actions. It was not a good place to be.
I joined an online support group for people with chronic pain and asked some of them if they’d ever heard of this mysterious scarring the nephrologist referred to, since I had not. And, keeping in mind that these people are not doctors and just other patients like me, the news was hopeful. None of them had ever heard of it or received that warning when they underwent the treatment. I began to hope that the nephrologist was wrong, or possibly confusing my treatment with another one.
Then I got the best message from another woman on the support group. She reminded me that it’s not ok for me to live my life huddled in a corner, weeping from pain. That’s no way to live. And it’s also not ok to live in fear… fear of what the future may bring, what side effects the treatments will cause, etc. She told me to do my research, find the best option, then go with it and don’t doubt myself. Living with the fear of the future hanging over my head is no way to live, and living in pain isn’t either. She encouraged me to not let them rule my life, to take charge and be in control.
It was so exactly what I needed to hear. The encouragement from a stranger is sometimes the best thing for us. So I’ve made up my mind; I’m not going to live in pain, or fear. This means I need to switch doctors and look into finding ones who really actually care about me and my health, who will work to help me find treatments and get better, and not simply try and get me out of their offices as quickly as possible. I have found a new doctor, who is near my new apartment and who gets rave reviews. It’s a rather long process of switching over and making her my new primary care physician, but I’m starting it. I’m tired of being the only one who cares if my treatments are working or not. I’m tired of being swept under the rug, because the doctors are embarrassed that they have no idea what to do with me. I’m done with that. I’m going to find a team of doctors who will actually help me.
It will be a few weeks or months before I can even see this new doctor, but I’m hopeful about her. And if she is not what I need, I will keep looking. I will find people who can help me.
* * * * * * *
In other news, my grandmother passed away Tuesday night. She had been declining in health since April, and it was an incredibly slow and long, suffering-filled process for her. I’m glad she’s finally at peace, not suffering, and reunited with my grandfather, who passed away a few years before her. She was never happy without him; they belonged together. And now they’re together again… it’s a good thing for them both.
* * * * * * *
Geoff posted up some of the photos he took in the Jim Morrison Room. You should check them out!
* * * * * * *
And I finally got my Halloween self portrait finished and uploaded. It was fun to shoot, and no, that pumpkin is not Photoshopped; it really is on my head. It was very humid inside and a bit hard to breathe or hear anything. And the I was covered with pumpkin goo afterward, but it was all fun and worth it. Geoff helped me and was my human tripod again, which made the whole process a lot easier than it would have been otherwise. Thanks, honey!