Thursday, April 7, 2011

Feeling quite under par.

You know, because of where I've been with my health, I react differently than most normal people to different things that happen to our bodies. Like with this neck & shoulder pain; I have been wondering if the PVNS has taken root in my shoulder or neck joints. Now, PVNS is a *really, really* rare disease, but I had it, and it can travel to other joints in people who have had it. Once one joint has had it, there is the possibility to pop up again in another joint. My logical, "normal" self says "no way, no chance. It is a ridiculous thought." But, it's not that ridiculous... the way the disease works it could happen.

Then again, I am also getting low-grade fevers with chills. My lymphedema in the thigh next to gapey is acting up... lymph nodes filling with lymphatic fluid and getting swollen, which usually means there is an infection I am fighting. That hasn't happened for a long time. Hmmm?
Then again it feels more like the upper spine/neck joint pain. It is *sharp* pain, like a knife. It never goes away.

I will never be the person who takes health related things in a cavalier way. Often, when I go to sleep feeling not so great, I wonder if I'll wake in the middle of the night with a bacteria that will soon kill me. You'd be surprised how many times I wonder if NF will strike again. I try to play it cool with my body; try to tell it "I know this game, I am not getting all worked up about this, I'm going to ignore it until it goes away, or screams at me."

Anyway, this pain is screaming at me in a big way. I am getting x-rays of the neck/shoulder tomorrow, and going to a top orthopedist (neck & spine specialist) on Wednesday. In my experience, he'll probably want a CT, or perhaps MRI if he is thinking PVNS also.

I have changed.
Because of my medical history, I am a person who lives a little differently. I did not go back to work. I can't be consistent in a commitment to a birthing woman, or to play a concert series. It's OK, I am ok with not working, really. I am ok with everything that has happened, actually.
But I'm different, and I am acutely aware of my body and what feels like it's really nothing, and what feels like it needs attention.

This pain in the neck (hehe) is screaming out for attention, so I conceded.

It's just that the thoughts of Really Bad Medical Things dwelling under the surface are constant companions for me, no matter how good I keep it together on the outside, or how good I may look. Or, how many times I say I am fine, BH. I *am* fine, but I always understand that my definition of fine, (combined with my emmunah) is different than most people's definition of fine.

With me, what you see is not what you get.
That's what happened when I had NF (the referred pain was the biggest liar), and PVNS; everyone thought it was just residual pain from the trauma. I knew intuitively it was something more. But PVNS is a rare disease that hides from most doctors, much like the NF was hiding, until it almost succeeded in doing me in.

In a rambling way I am saying here that I am a little scared of what is going on with my new, very sharp, unrelenting pain. Not scared enough to not take action, though, BH.

I feel fevery, I am going to sleep now. I was supposed to go to a lovely folk singer concert tonight, but I don't feel well, at all. :-/

Painting the inside of our house starts on Sunday. Packing up all the books, taking everything off the walls, it's a big job. I hope Robert and Dov are up to it. The children have Passover vacation starting Sunday. We'll make it, we always do. :-)

1 comment :

  1. thinking of you and wishing you refua shlaima.