Tuesday, June 26, 2012

Reinacting The Chase

You can't get off the ride, even if you want to. It only stops when it is programmed to stop.

I can't even to BEGIN to describe my frustration. It's all been said, like about a zillion times on this blog. Maybe you remember a long time ago (Nov.of 08, to be exact- almost four years ago) when I was searching for a diagnosis which eventually ended up with PVNS? It was an arduous journey, fighting for the proper test. I *knew* that something was WRONG with my thigh. I was the only one who knew for sure that something, other than all the scar tissue and grafts and nerve pain, was wrong with my thigh.

Today, before writing what has been going on presently, I will quote myself from entries four years go, while searching for a diagnosis for my pain. It basically covers where I stand now.

Old entries from four years ago:

Weary from the Chase- November 16, 2008

"Today I finally got to my family doctor about the swelling & pain that I have had for months on my left thigh. It is a grapefruit sized ball on the side of my thigh that is swollen and painful all the time. It has clearly defined lines, and it is exactly the place I had the cellulitis last March."

Well, in this case now (I'm in 2012 now folks, gotta be quick around me!) I got to my family doctor yesterday. She saw me quickly, and gave me the referrals for x-ray and ultrasound, like it always starts. I had the x-ray yesterday (ow), and had the ultrasound today (extra ow!). No results yet. I already know though, that nothing will show. The x-ray is just a gross picture of bone, and the ultrasound guy today (top technician in the place) said he didn't see anything unusual. OK, let's go on with the [oh, so relevant] past:

The ongoing chase- November 18, 2008

It feels like something is Really Wrong in that thigh, but how can I have any strength physically or mentally to fight for a clear diagnosis. I know that the tests will all be negative. Unfortunately, that doesn't convince me. 

Like I said: then, just like now, I knew the initial tests will be negative, and that I'd have to have strength to go looking for better diagnostic tests. History repeats itself. Especially, I might add, when dealing with socialized medicine, where there are not enough doctors for too much work.  
(I might also add that I am totally *FOR* socialized medicine. I think it is awesome that everything is paid for. It's just that private pays more, of course, so many doctors opt for that route, and the doctors that work "in the system" are overworked and underpaid. It is a predictable, systemic problem. But it sure beats scrambling for expensive health care, and going without treatment because you are unemployed, which happens in the private healthcare systems. OK, soap box slid away.)

I'm ending the chase- Nov 19, 2008

"I am officially ending this diagnosis chase. One of two things will happen with this leg pain: a) it gets worse and I wind up in the ER, or 
b) it stays the same and I'll just have to live with it. 
I have no strength for more calls and more evaluations. I'm done."
 (then further down the page of that same entry...)
 "It feels very isolating sometimes to live in this aftermath of NF. I wish I could just snap out of it."

I still have those dreams of just snapping out of it. Wouldn't anyone?

I know I just started with these two life coaches, but I feel like there is no point until I get out of medical crises and start to be able to live. I can't start my book, which is my main goal for the coaching. I can't pick up my horn, which is another big goal. I can't do *anything* when I have pain that needs to be diagnosed. I live it and breathe it. I wake up and feel it [almost] first thing in the morning. I can't even do physical therapy; it hurts too much.

I am scatterbrained with my children (and with my writing, right?).
Thankfully, Robert is home these days-- he's a teacher, so it is summer vacation. He has work at home with his translating and editing, but his job traveling to Mitzpe Ramon is temporarily suspended for the summer vacation.

I will go back to my GP either tomorrow or Wednesday.

I found myself on the phone with Robert today saying "It never ends!! It just never ends!!!"
Of course, for him, it also doesn't end. We are married; what happens to me, happens to him. I think that if I were healthy and strong again, he'd go back to school for a PhD. I want that for him.

It makes me cuckoo to think of the future. I'm not going to do that.
All we have is now.
And now, I am going to sleep.


btw- update about my mom- many people have been asking:
 She has regained all her physical health-- a true miracle in and of itself!
She is having trouble with trying to walk again. As of yet, she cannot walk.
More worrisome is that her mind isn't what is was. Part of her is just missing. 
A big part of her.
 She answers questions mostly with yes or no.
She is confused about life situations; she reports things different than they are.
It makes me very, very sad.
I am mourning the mom that I had, only a few short months ago. 

My father gets his hip replacement on Thursday.
He is very worried... about mom, about surgery...
You can imagine.
His rehabilitation will be at the same nursing home that my mother is in,
and they are [hopefully] going to be in the same room!
I'll update more after my father's surgery.
His Hebrew name for praying for his health is Shraga Feivel ben Zlotke.


  1. You know your body better than anyone else does. Be persistent. I know going through the process drains your energy, but hang in there. It's too bad there isn't something similar to what in the States would be called a Case Manager, especially if that person was a good diagnostician.

  2. ‏"נשמע שאת עוברת תקופה קשה במיוחד! מתפללת לרפואתך במהרה!!"‏