Yesterday I had an appointment with my general practitioner. I brought copies of all my latest bloodwork (taken with the rheumatologist). I had so many questions to ask him. We discussed the phototherapy and the Cutaneous T-Cell lymphoma. He was glad that we were getting ahead of this.
We talked about the kidney numbers. Having numbers in the 50’s again has me so worried about Chronic Kidney Disease. He basically said that my numbers could be going down by my huge intake of Advil or possibly caused by Sjogren’s Syndrome. I had already stopped Advil. There are two big problems with that.
The first problem is that I’m already in the 50’s, which is called Stage 3 CKD. I told the doctor that I don’t want to wait until the numbers are down in the 40’s to try and save them. But, thinking about my immune system possibly attacking my kidneys is an entirely different problem.
Sjogren’s Syndrome can attack the organs in the same way that Lupus does. If that is happening then something really needs to be done. I know that certain medications would need to be taken to stop this. I’m not sure how the doctor will be able to know. That’s my next area of questioning.
Then we talked about how to deal with all my uncontrolled pain. Without Advil, I’m not able to keep my pain at a manageable level. We came up with some alternatives. I’ll be adding another 1mg dose of muscle relaxers at lunch. The doctor is also adding some supplements and a CBD trial.
I really don’t have much hope in the natural things, but I’m willing to try it. Today was my second phototherapy treatment. I spent 39 seconds in the machine. The doctor has me set to have a very gradual increase of time in the machine. I don’t know what will happen on Friday.
I took sunscreen this time to cover some sensitive areas and moles. I can’t believe it, but I forgot to wear my eye protection goggles! So, I decided to tie the goggles to my sunscreen bottle with a rubber-band. It’s bad to have such brain-fog that I can’t even remember to protect my eyes.
I have a fasting blood test in the morning. I can’t remember what the tests are for, but I guess it doesn’t matter. There always seems to be a test of some kind. It gets old, but when you have all these disorders and diseases, testing is necessary.
February is a hard month because of these trips to get phototherapy. It takes so much time out of the day and the drive is hard on my back. Being sick is a full-time job. The apprehension surrounding treatments and just knowing that it is to treat cancerous cells is real. I don’t see any redness from the treatments but I do have that feeling that you get when you have been sunbathing.
I’m thankful for my doctors, my husband (who drives me to all these appointments), and even Archie (who jumps for joy when I get home). If you’re going to be sick having a sweet dog is going to make everything better.
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.