Friday, June 29, 2012

Something is wrong, but lots of things are right.

Something Is Wrong.
We don't yet know what, but I am just in that place of knowing that my body isn't behaving like I would expect it to.
There is the new Big Pain in my thigh. What the he(ck) is it? It is at the same time a deep bone pain, and also sensitive to the touch. It hurts if it is even slightly touched, but has no redness. So, that indicates nerve pain. I used the TENS machine I just got, which is for helping diffuse nerve pain, and it didn't work. And, if it is nerve pain, why would I feel it deep in the bone?

Yesterday I had a CT scan. We won't have any evaluation from that until next week-- Mon/Tuesday. It was done without the contrast dye, so it would show if anything orthopedic is going on, rather than soft tissue. On the other hand, if there isn't anything seen in this scan, we'd possibly do another one with the contrast dye (so sorry, kidneys, I know that isn't good for you guys, but I gotta do what I gotta do) to see if the pain is soft tissue related, *even though* the ultrasound came out negative.

I am starting to have the same worries that I had before the diagnosis of PVNS. That is that I am going to be stuck with this pain forever, and this is my new reality, and nothing can be done about it. When I finally did get the PVNS diagnosis, however, I realized that I *was right* in listening to that voice telling me something is wrong. It was wrong, but since it was a rare disease, it took a lot or sleuth work to figure it out.

Now I feel the same worries that I will have to live with this pain forever (Gd Forbid!! It is a really bad pain-- I can barely do any normal activities.). It's bad-- I can't even believe it sometimes. And I don't understand it-- it isn't clear. Is it nerve? Is it bone? Is it tissue damage of some sort?

Now, also, I have this weakness and fatigue, I can't stand for very long or I feel like I'd faint. I slept today (Friday) until 3pm. I went downstairs to get something to eat, and I was bombarded with 4 children who each needed me in a big way! It is wonderful, and so tiring in the condition I am in. It was the last day of school, everyone got te'udot (report cards) they wanted to proudly show me, tell me all the important news of their lives. Ya'akov especially needed mommy time (I gave it to him, while leaning back in his bed). He needed to personally read to me his whole report card. Then he showed me his new books, awarded to him for "exemplary student" status, as well as for graduating from 6th grade. Speaking of graduating from 6th grade, yesterday after the doctor visits and CT scan, I went to his graduation ceremony from elementary school. It was very moving, and I had lots of joy in my heart for him! Competing with that joy, though, was the pain and sick feeling. It was so hard to sit on those cheap plastic chairs (because it was outdoors) for hours! But it was so important to share that all with him, and I thank Gd that I had it in me. Ya'akov was holding my hand the whole time in his lap... (ima, don't go! Look at all my stuff from school! Look at me! I am graduating! Be proud!) And I stayed.

Back to today...
After sharing that time with Ya'akov in his room, I started feeling so dizzy so I had to go back up to my room. On my way up- what is there, but laundry-- always looking at me when I go upstairs is the door out to the upper deck of the house- where the laundry room is. So, instead of going into my room, I checked out the scenario in the laundry room. Not usually a great idea if my aim is to rest. I transferred a load to the dryer, put in a load, tidied up a bit in there, with Shifra's help. Then I almost fainted.

I am now back in bed, laptop on me. It's off center, mostly on my right thigh, because my left thigh cannot take the pressure of having the laptop on it. Even my hands feel shaky as I am typing.

Shifra now just came up and lied down next to me. Then hopped up saying "ima! Look what I made!" and went down... soon to come back and show me...
Azriel is downstairs asking his older brothers "can you do for me a shower? Who can do for me a shower?"
Shifra is back up here with her things to show me...... hang on............

Shabbat Shalom from a mother spread thin, struggling with some new pain, possibly some new illness, but bursting with love.

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