Friday, May 12, 2017

Ten Year re-birth-aversary

Ten Years.

This weekend marks my ten year anniversary of waking up from the coma when I had NF. It was on the Jewish Holiday of Lag B'Omer.

I find that amazing. I've gone through ***so*** much in those years, it's mind boggling. My book is well in process. It's just an incredible milestone in my mind, ten years, you know?

it's always good to celebrate with a chocolate cake!
and the candles remind me of the bonfires on Lag B'Omer
I am in a good place to write about how it feels to be ten years out of that horrendous disease. I'm also quite active on the NF group Facebook page (I'm a moderator now), and find it amazingly fulfilling to be with others in their stories as well. For many years I've been kind of alone in my NF aftermath struggles, without knowing many people who had experienced NF. Having the connections with the people on the Facebook page is really strengthening for me. We have so much in common, I am not isolated in the after-effects I've suffered (and to a certain extent still suffer). Other people's scars and grafts look like mine (and I am totally comfortable posting pictures to the group of my scars, which I could never think of doing before), emotional and psychological effects similar, even down to sleep disorders. It's almost as if we could write a textbook. I feel quite fulfilled when I can help people who are struggling with this. It's a bit like how I felt doing doula work as well, in that I have acquired skills and experience to give to people which makes their suffering less. That seems to be one of my callings, for sure.

I still have that abscess from the last blog post, but at the moment it's not "active". The antibiotics took down the fever and swelling for that flare-up, but I will be doing something about it at some point. I have a consult with one doctor tomorrow about it, and another consult in June if it can wait that long. As long as it's not active, it doesn't bother my life. But I feel it there, and the area is never without some level of pain.

I am playing horn as frequently as I can these days, but not as much as I used to be able to. I just don't have that ability anymore. I can't play that much. My body just does not let it happen. I am often exhausted (more on that later), and recently have developed a tremendous pain in my shoulder/neck on the side which holds up the horn while playing (left), with tingling down to my fingers. I'll get some massages, but mainly I believe it comes to tell me that playing horn is causing me tension. Tension in muscles causes less oxygen to be carried through the blood to the muscles, and they can seize up that way. It is a theory called "TMS" (Tension Myositis syndrome), a theory presented by Dr. John Sarno in his book "Mind Over Back Pain", which I read in 1990 when I was flat out with a bad back. It makes a lot of sense that I'd get TMS when I start to play horn again... lots of history there, and my own inner competition and perfectionism. It's *hard* for me to play now at the level I am at; making lots of mistakes during orchestra rehearsals. Of course, the orchestra is volunteer and amateur, so I'm not the only one making mistakes by far, but for me to hear myself this way is hard. It's all part of accepting the post- NF Sarah. But in the meantime, I am having lots of problems with my arm and shoulder, unfortunately. I hope it'll calm down soon.

I finally saw a psychiatrist last week. I've been waiting months. She was recommended to me by my neurologist, they work together.  Since it is in the HMO, at Soroka, so seeing her is free, which is good. I feel that I have already started to get out of the depression from after Sabrina passed away, but my sleeping has been awful, and I do still need different types of medicinal support. I basically haven't slept properly in many months... years? The sleeping pill I have been taking for almost ten years lost it's effectiveness, and, well, I really haven't slept deeply in... who knows. Many months, for sure, possibly years, I think.

So I tried to tell my abbreviated life story to this psychiatrist, and it got all jumbled. But she was good, and I think with her clarifying questions and seeing some of my history, she was able to prescribe a new medicine. She told me at first to take half for two weeks, then a whole one.
Well, that first half put me out for 24 hours. No joke. I did get up to eat a bit and show my face over Shabbat, but I slept most of Shabbat. I did go out for about two hours in the afternoon, but was still fuzzy and tired the whole time. Robert thinks that my body (and brain) was just so happy to sleep deeply, that it drank in more and more. I think I have been extremely sleep deprived. I know I have been. We all know I'd rather fix the problem without pills, and that goal is not out of reach, but not for now.

So the next night, after so much sleeping, I was in a quandary as to whether to take another half or not. I can't keep just sleeping, obviously. So, I cut the half pills into quarters. Even that put me to sleep and made me feel a bit woozy half the next day. I am still taking the quarter pill at nights, and I am sleeping well, thank Gd, but not feeling so great during the day. I'll give my body a bit of time to get used to it. Then, of course, I have to wean off the old pill. That'll be fun. For now they are both in my system nightly.

(This part was written on Thursday)

I saw the specialist today about the abscess. He said that with the next flare-up, I should go straight to the hospital (not bother with the doctor first) and get it drained. That is not just one little simple procedure, mind you... it is two procedures, a month apart.... the abscess needs a tiny catheter to remain in the gland to drain for a month before closure. Today it was too small for him to do anything about it. So, treatment plan in place... but not one I am so fond of. Maybe Hashem will create a miracle and make it never flare-up again. :)

Soon I'm leaving for the orchestra rehearsal, and I'm not feeling so great, and my fingers are tingling from my shoulder pain (I'm now thinking it's a pinched nerve). And I have a nasty headache.

Tomorrow morning at 7:30am I'll be doing an MRI for my hips. How's that for terrible scheduling!

I may just sleep through another Shabbat. Hard to predict.

Time was that playing an entire Beethoven symphony was just the beginning of my day, or the end of a long day, and it wasn't a big deal. *Now*, when I play with the orchestra, Beethoven 6th symphony (one of my all-time favorites) it takes EVERYTHING out of me, I can barely make it through. And then I sleep all the next day. I can barely do this orchestra thing, but I am going to keep trying until I have a good enough reason to stop.

Ten Years ago my life changed on a dime. To this day, I feel that I not only left "a pound of flesh" in that hospital, but a piece of my soul. Thankfully Hashem doesn't skimp on souls, and allows for regeneration. Shabbat Shalom! Lag Sameach!

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