Thursday, January 18, 2018

It's just too much pain.

Ten Years.

Some people grow stronger from suffering, and some grow weaker. I've had so long to deal with it that I am both stronger and weaker because of it.

Today I feel weaker. Today the pain is winning. Honestly, how am I going to get out of this situation?
Plow through it and put on a strong face and just try to get back out into life? That's what I try to do. There have been days that the pain was better.... they really did exist. Two or three of them, not in a row.

But I am growing weaker from the fight. Weaker in spirit as much as body.

I want to do things, I want to do yoga, get back to my Tai Chi, LIVE. I want to be in life.

But the pain stops me. It's just too much pain.

Dr. S is still forming theories about what is going on. I've had 4 treatments with him. He thinks that there is an issue going on with the stomach wall/subcutaneous nerve entrapment syndrome, and also possibly a digestive "biome" imbalance as well. That means some of the bad bouts of diarrhea I've recently had, combined with other signs are saying that the digestive system is angry, and possibly putting pressure on the inflamed/delicate abdominal wall issues making things worse.

In short, it's all a shot in the dark. No "for sure" diagnosis, but a theory of a confluence of things happening. But it started very suddenly, not like a confluence of things gradually happening. I am so confused about what the heck is going on. It started in early September. One day I lost my appetite, the next day the pain started, and I started going to do tests. I thought I had a UTI, but alas, nothing that simple showed up on any tests.

Now, four months later dealing with the SAME PAIN, and I am really losing my sense of where to go, what to do, how to deal.

I made an appointment for this coming Tuesday to see the anesthesiologist/pain specialist that Rav Fisher recommend I go see. He does pain control with nerve blocks/long-term epidurals and the like. I actually saw him about 7 years ago, when the pain in my belly was also horrendous after the mesh surgery. He said at the time he couldn't help me, I had too many different types of pain- deep tissue, joint pain from the PVNS surgeries, and superficial sensory nerve problems, he felt he couldn't address it all. That was this post.

But maybe it's not a good idea to numb the pain-- maybe I need to know there is something wrong-- pain comes to tell us something. It's just been four months of this torture, and anesthesia sounds pretty good to me right now.

The other thing going on is that I am going to start translating my recent medical records (regarding this pain, not *all* my records) to send them to the Mayo clinic in Rochester Minnesota. They are well known for talented diagnosticians, and I think if I can't get any answers here I need to go there. It could be months before they give me an appointment, and I should have it as a back-up plan if all the treatments I am trying here aren't working. I'd have done it already, but I have gotten lazy about my desire to translate my medical records. But I have to do it. We found out from our insurance that they wouldn't cover very much of a diagnostic visit there, but we'll work out those details later. Maybe the Mayo clinic has a sliding scale for international patients, we'll see. First I have to translate and apply.

In the meantime, I did manage to: have a pre-natal meeting with a single pregnant lady who is very scared (recently divorced), and I hope to continue to support her through her birth, drive to Jerusalem yesterday and have a meeting with the rav who is Rosh Yeshiva where I learned- Midreshet Rachel- to talk about life, and how to deal with my crisis of faith. I also visited with Ya'akov and got him dinner, then went to Dr. S for a treatment. Today I have a lot of pain, though, like I already said. I don't know if the treatments are working.

I'm not going to write more about the despair that happens if I let myself go there. I saw a bit of it today, and it's not good. It can spiral really fast. I don't understand why I have to be in this much pain, and it's not for us to understand.

Just know I'm not doing well, and I would love visits and calls as much as possible from friends. Even a text here and there help. It's hard and very isolating to be in pain all the time.