New pain doctor, debulking my expectations from life

My laptop is too heavy for my lap. My lap now consists of my right leg, and not touching my stomach. Not so simple. Robert went out and bought me a lighter laptop, but I need a smaller and even lighter one. We'll exchange it. I do use a pillow/desk with it when I write in bed (almost always), but that isn't so good anymore either. Too much jutting into my stomach. I have to revamp the system... my left thigh just hurts too much.

And we don't yet know why.
The bone scan came back negative for Osteomyelitis. Which is a very good thing. But we still don't know why I'm in so much pain. Remember last year how all year I didn't take any pain meds with that abdominal pain? That is because it went away when I lied down, so it was livable. This pain in my thigh does not go away, ever. Lying down sometimes makes it hurt more. So, unlike last year when I was so against taking pain meds, I am now taking the lowest dose of Percocet, almost every night, so I can sleep. Otherwise (and even with the Percocet) I wake up in pain. I often wake up if my body went to lying on my left side unconsciously, it hurts *SO MUCH* if I do that. I wake up in agony. Another Percocet, perhaps with a half sleeping pill, and I'm back to sleep.

Last week I went to the pain clinic in Ichilov hospital in Tel Aviv. That is where I have my orthopedic oncologist for the PVNS, but I'd never been there for any other medical care. Until this visit to the pain clinic. My primary care physician heard that they may possibly be able to do the pain shots in my abdomen if these wear off, so she got me an appointment there.

I walked into his office, and he didn't even make eye contact (oh, one of those types of doctors, I said to myself). I handed him my referral. He read it carefully. Then he asked for the Mayo clinic paperwork. I handed that over. I told him I can translate any English if he needs, he said "no need". Still does not know what I look like. He then asked me, still without looking at me, what is the actual diagnosis? I said, well, there isn't really one. It seems that whatever the problem is, is in my abdominal wall muscles because putting the steroid shots there took the pain away. It could possibly be my mesh and clips in there, and this surgeon in New York put forth a plan for reconstruction, but I haven't decided yet if I'm going to do it or not.

He asked a bunch of more questions. We talked about my migraines, and when he asked if I ever have numbness in my appendages, I told him about the last time I was practicing horn every day (over a year ago), I lost feeling in two fingers on my left hand, and it only came back after I stopped playing and made many visits to an osteopath. I didn't know if that would happen again if I started playing again, because of all these pain issues I haven't been able to play.

He was looking at me by this point. We were talking. I was relieved to see his eyes and compassion.

This is what he summarized:

"I can do those shots for you any time you want. But that is not the goal... I don't like at all that there is no diagnosis here. You went all the way to the Mayo clinic, the best of the best, and came back with pain shots and no diagnosis. That is disappointing. I am not satisfied with that. I am sending you for lots of tests... including a whole body MRI. I want to rule out spinal cord problems."

(I told him, but I don't think I've told you, that I have had spinal pain, including one right rib, for months now. I didn't talk about it though because, well, it's not screaming for attention, It's just there.)

He sent me home with a slew of tests, that even until now I have not looked over. The paperwork is still in my bag unopened. He mentioned MS, but said not to be scared, he didn't think I have MS, but he wants the tests to be done thoroughly and correctly, so he wrote "suspicion of MS".

So that's where things stand. I told him about my leg, also, but at that point in the week I didn't have the bone scan results yet. Now I do. He said that anyway bone scans are cursory, they don't tell much. He wants MRI's, and I don't know what else. As I said, I didn't look at all the referrals yet. I can't handle it. I honestly am so sick of doing tests, and setting them up, traveling to them, messing up a day or two depending on the backlash (migraines).

I am beginning to realize that my goals of playing horn again, or being a birth coach again are not realistic goals for me. My goal has to be getting healthy and staying healthy (as if that has been in my control). It's a full-time job. My kids need me a lot... it seems more than ever. Babies take a lot of time and you think things will be better when they are older, but the hardships emotionally take a lot of physical and emotional energy. And I'm of course still driving them to activities and bringing them to their appointments too. Eye doctors, hair cuts, teeth cleanings, dance classes, you name it. Even Shifra needed an MRI and I had to drive to Rechovot for that last week. It doesn't go away when they have a bus card. They still need me full time. They need good food all the time, too. Lots of it. Four teenagers. And I want to be there for them, and I am in pain. It's incredibly hard.

I managed to go to the gym once last week. I am aiming for more than that, but the pain in my thigh just depresses me and stops me. The gym has a pool, though, so even if I feel I can't work my muscles on ground, I can go into the pool. I LOVE water, and most of you know I'm a swimmer (I had a lifeguard licence back in the day!). So getting to the gym is a priority, and being there for my kids, That's all I can do with all this other stuff going on. I'm just slimming down my life, and expectations, so life may be less disappointing.

That's the update. More pain, no answers.
I am scared out of my mind that this thigh pain will continue on and on with no diagnosis. I don't think I have it in me to do that again.