Wednesday, May 18, 2022

On the eve of my coma-versary

My friend said "I hope your pain is better, you didn't talk about it at all" at our dinner together last night. No hun, it's not better, I just don't like to talk about it. I write about it in this blog, but I don't talk about it much. If I'm "on-line" with other NF survivors (I am part of a support group of people who have had Necrotizing Fasciitis, all over the world) I talk about it if I'm asked how am I doing. But in general, if you're not my husband or physiotherapist, you won't hear about it much, if at all. I don't even talk about it much with my family doctor. I only talk about it enough to get what I need (a referral for a CT scan, for instance). I mean, how much can a person discuss their pain? It's not really a conversation starter.

But yeah, I'm hurting big time. It sometimes wakes me up at night if I zig instead of zag, or roll onto that side by mistake. When I wake up in the morning, the first thing I feel is pain. When I walk, get dressed, do the stairs in either direction, get into the car, get out of the car, sit in a chair, stand up from a chair, you name it, that pain is always with me. And it's not getting any better with the intensive physical therapy I am doing. I may actually stop the physical therapy if it's not going to work. Not sure yet about that.

I gotta say here, on the blog that I opened for saying the hard stuff, it SUCKS to have constant pain. My fellow NF survivors can relate, I'm sure. Many of them are also in pain much of the time.

I had two and a half good years of no pain. (I'm 15 years after NF). That was after my reconstruction surgery in New York. But it's back. It's not the same pain I had before that surgery, though, it's totally different. I described it to my surgeon in New York when I wrote to him asking for an MRI.

He wrote back saying that he remembers that I had a "subcutaneous femoral..." hurdeehur........ I don't remember how he said it (I could go back and quote his email, but isn't it funnier to say hurdeehur)? Amazing that he remembered that from almost three years ago; he has a busy thriving practice, and I was a long time ago. He said he remembered that hurdeehur thing, but he wanted to go over my surgical records again and he'll get back to me. I'm now waiting for him to get back to me. If I don't hear from him this week, I'll gently remind him of my letter at the start of next week.

"But you're healthy" said my dear friend Miriam while we were drinking tea by the moonlight in my garden. "This time, you're healthy". Yes, it's true. I feel like I'm in a good place emotionally, and my body is strong. Thank the Good Lord for that. But the pain. It is awful to be in constant pain. It's almost all I can think about because it's always there. I'd be much healthier without it.

So we wait to hear from Dr. Margiotta, the New York doctor. The not knowing is the hard part. Not knowing what the pain is from, not knowing if he can help me, not knowing if we're going to New York this summer to see him, not knowing if I'd go for an exam, or for surgery, or... both?

Thanks for letting me confide in you. It makes a big difference that I can get this out here.

PS- the title refers to this date being the day that I woke up after the induced coma from having NF.


  1. Gd willing, the experts will find a way to eliminate your pain again.

  2. Hang in there, girl!