I saw the surgeon today. He didn’t smile much at first. I always try to read him when I go in. I asked if he had bad news. I said, am I going to have to do that fight again, another excruciating, painful time? He said yes. I said, you could have given that news a little easier don’t you think? He laughed. I said, do you say this with certainty? He said, yes, but your veins and blood aren’t doing it right now.
Phlegmasia cerulea dolens. You vicious, evil demon.
I talked to him about the pain and he suggested cbd oil. I said, I’m ahead of you on that one. He said bc of how I clot, it’s not a good idea to give me a nerve block or any of those injections. I’d have to stop taking my blood thinner for 2 days each time I needed an injection. He and I agree that I should not risk even two days off the blood thinner. He’s sending me to a pain specialist with experience dealing with what I went through. Phlegmasia cerulea dolens in a patient with Lupus. I just shake my head because I have never felt more pain.
It’s frightening, but Dr. L said it looks fine right now but his experience says all hell will break lose again. Until it does I have to learn to live without feeling like I have a black cloud over my head, like I’m just hanging around waiting for the other shoe to fall. Part of me wanted to know if I’d have to do it all again because I hoped the answer was no. I wanted him to say the worst was behind me. I hoped I would be a 90 yr old woman causing trouble in the nursing home because some whipersnapper snuck me in some chocolate and wine. What the heck am I supposed to do now? It’s only been recent that I stopped thinking each day may be my last. I had a ‘why bother’ attitude, ‘I’m just going to get another blood clot and die anyway.’ Only recently have I stopped living like that.
What he said today is sobering but not 100% a death sentence. It feels like it because I barely survived my body the first time. I guess the plan is to keep making emotional progress, keep moving forward until whenever. I’ll find a way to thrive and do so with my new furry boy, Joey.
Today I had myself a nice cry on the bed. He snuggled up to me then slept on my hip. He’s beside me right now. I just love this guy.
Dr. L suggested I try cbd gel for my feet instead of the regular oil. I’ll try to get it some next month.
Thank goodness for insurance. I may be upset about my out of pocket expenses but shoot, I take $17,000 a month in prescribed medication. I would be in serious trouble if I weren’t well covered. My insurance pays for my nurse and CNA, too.
I believe chocolate should be covered by insurance.