I really think my recovery from NF would have been so much simpler if the PVNS disease hadn't entered the picture. Most of my pain now is from my thigh joint (or hip; same thing. Seems that Israelis say thigh, Americans say hip.) I do have pain from the mesh in my belly that is holding things in since the NF surgeries, but it isn't as debilitating as the PVNS.
I let my thoughts wander the other day while washing a mountain of dishes. I pictured this: Having a successful hip replacement, then doing the reconstruction of Gapey which is supposed to eliminate the mesh pain. Then I'd eventually be off all the medicines. It'd be all over by the time I'm 45.
Then I got my mind back to the dishes... the warm water, the soap cleaning away the food from the day... one thing at a time.
Yesterday was one of those tiring days visiting Ichilov hospital in Tel Aviv. (funny side note here- my spell checker for Ichilov says "lovechild". That'd be quite the typo! Cracked me up :-))
The trains are down again, so the bus it was.
I got there exactly on time, but it took nearly an hour before my name was called to see Professor Meller. I kept giving my seat to people on crutches, or huge shoulder casts (twice I gave my seat away). Walking the halls isn't so great, though. I have to take care of myself better in this regard... I can walk, and others can't (especially in Meller's office), but I wind up with a lot of pain if I can't sit down. I won't do that again, unless it is absolutely necessary.
Anyway, the actual appointment:
I brought with me everything that I usually need at these appointments: the most recent MRI, the MRI before that, and the payment from cupat cholim (HMO).
Turns out that Prof Meller wanted *more* MRI's. Apparently, he wanted all of them since the surgery two years ago. I was never notified that this visit is any different, and I told him that. He said that he always wants all the tests in the past, nothing has changed. Well, I wasn't about to argue with him, but I have always brought the same things, and I never got any hint that it was inadequate. So, he requested that I get the rest of the tests to him ASAP. This means hand delivery directly to his office. I'm working on the best way to do that.
Then came the physical exam. That did go like every other visit-- I can expect to walk away in more pain than when I entered. He wants to see my flexibility in the joint, so the way to do that is twist and turn and fold it until you get the boundaries of movement. The only word for that is 'ow'.
Sitting together with him in the office again, he asked about my general health. I told him about the kidney problem. He said "you have nephrocalcinosis?" "How old are you"? I answered 43. "I need the report from the nephrologist". "You should always bring any medical reports of any changes in your health. Have that delivered with your other MRI's".
We spoke about my increased pain, and the methadone. He said that since my pain doctor, Dr Z, is a friend of his, he'll call him to discuss my case.
I took the opportunity to discuss the possibility of a hip replacement. I see that as a way to get off the medicines, save my kidneys, liver, and whatever else will have to pay the price of taking medications long term.
He said that nothing is off the discussion table, but there isn't any more to talk about until he sees all my MRI's. He will give my tests to the radiograph specialist, and have a staff meeting to discuss my case. Like usual, I will get a call from his secretary when that is all over, and make an appointment to come back to discuss the findings and treatment suggestions.
I think I'll be in America when Prof. Meller tells his secretary to call me; it is usually about three or four weeks, and we are flying in two weeks. We'll be back two weeks after that, so I'll call the office then (when I return).
Meanwhile, I will wash dishes when I am not in pain and not sleeping (a small but treasured part of the day), I will enjoy my care-free children off from school, and oh yeah-- I forgot to say-- continue my meetings with a psychiatrist for hypnosis for pain control. Long sentence... but I had forgotten to tell you that. I pray that these meetings with a [very well recommended] psychiatrist work. The final goal is self hypnosis by using shortcuts that I'll learn. With the help of Gd this will work.
And while we're talking about prayer, will y'all lend a prayer to the air conditioner parts shop to get the part out to our repairman so he can FIX OUT AIR CONDITIONING!!!!!! Heat wave in Be'er Sheva with no ac in the living room for a week already. Bad news. At least we have it in the bedrooms (separate units).
Blessings to all... and to all a good night. :-)
how the spell checker came up with lovechild, I will never understand. but, glad the appt. went well. hope the ac. gets fixed asap. and happy you get to travel. keep well. rochel.
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