Wednesday, July 11, 2012

How's life?

The last post was very intense, and concentrated on the specifics of one difficult meeting. Now I decided to write about all the other stuff that makes up... life as usual for me.
This was compiled over the course of three days! 
I kept falling asleep at the wheel [keyboard], then I'd wake up to see I still hadn't published this blog update!
Well, with no further adue (or editing)....

Orthopedic pain:
As fast as The Big Bad unidentified pain came, it seems to have started fading. I am much more functional with less [orthopedic] pain. I started back to physical therapy, and although it is *hard*, I do it. It hurts, but I do it. I trust my physical therapist to know when enough is enough. She is sensitive to the fact that I am not like other hip-rehab patients. After PT, yeah, it hurts, but not like it did last week, and the ones before that with The Big Pain.
I'm just going with the flow.
Come on along with me.

nerve pain:
Tomorrow I meet with Dr Z, my pain doctor. We need to discuss how to deal with the increased nerve pain, without increasing the Lyrica. I have been slowly increasing Lyrica for a few years, and now he says I'm maxed out. I fear what may need to happen; go down from the Lyrica in order to go up on some other nerve pain medicine. As much as it feels like the Lyrica isn't so effective anymore, I am *sure* that it is covering lots of bad stuff. Especially the mesh pain... I feel that more these days. I am scared to think how it'd be going off the Lyrica.

(OK, news flash! Straight from the future!... well, OK, from today, actually- I fell asleep before publishing this yesterday... So, Dr Z & I decided that until such time when I may have different needs (after reconstruction?), we are lowering the Lyrica. Scary. Started tonight already. The theory is to start on another type of nerve pain medicine when I am off Lyrica-- if I can make it to be off Lyrica.)

Know what?
All this JUNK. Surgeries, pain, trauma, awful-hearted doctors... I want to digress. There is so much more to my life. I know this blog is about life after NF, but hey, you get it.
We've been together for a long time... we know what is what.

Boston reflections:
Tonight I found myself ruminating about my life in Boston, before I made Aliyah.
I **loved** Boston. I had great friends, a broken-down, purely cherished, rent-control apartment right in the center of Cambridge- around the corner from MIT, close to Harvard. I so loved life in that apartment, in that area. The Cambridge Brewery... anyone know of it? Is it still there? I was in that apartment-- that neighborhood- for four years; a long time in the life of a single, vagrant musician. It was stable. I could always retreat to it. I was healthy and strong. I played concerts all over New England-- Boston (often), Plymouth, New Hampshire, Maine. I took vacations with friends in the snowy (or perfect weather in summer) mountains of Maine. The little quaint country style B&B's, with fireplaces in the rooms, and lots of extra soft quilts.
I waitressed in "Legal Seafoods" (*very* famous) to supplement my meager musician's  income. A great supplement is was!! It was a good life... good friends, a cool little car- 1986 Honda Prelude- red. Dug it out of the snow three thousand times, in order to get to classes- or rehearsals- in New England Conservatory, on time.
I sang in a Jewish choir- the Zamir Chorale of Boston (the homepage is updated, you won't see me there- that was in the 90's-- long ago and far away. I see so many of my friends there... a bit gray-er on top... but singing their hearts out. I *loved* that. I almost went there for a short jaunt when I was there last, before Pesach, to see my mother, but it wasn't practical. I was still on crutches, and needed to be with mom & dad 24/7. If I had gone, I'd have wanted to drop in on a rehearsal of Zamir, and visit a few other people/places. Well.... one time... we'll do that another time. Gd willing..

I didn't come to Israel because I was discontented. Far from it.
I came to Israel because my heart was (and is) here. 
 Also because they don't make religious musicians work on Shabbat. This was my home, I had no doubts. I had fears, but not doubts. I would give up the cozy rent-control apartment right in the middle of Kendal Square (I should've kept it!), sell my car and my bike, and meld into Israeli society.... hardly even knowing my alef-bet of the Hebrew language. I am now fluent. Baruch Hashem.
But the thoughts bring me back. You know how that goes, I am sure. It is human.

From there, I drifted to thoughts of my parents...

The matters of my Parents :

Anyone understand the feeling of having to mourn their parent before the actual end of that parent's life has happened? I am quite sure there are people here with us who know that. Probably well.
That is where I am at.
My mother- physically- has recovered much of her health. It is amazing, considering where she was a few short months ago- in a half coma, with a deadly bacteria threatening her heart. She got out of that. What is left, however, is that she cannot walk yet. Nobody really understands why.

Then there are the cognitive issues. Her brain. Now comes the part where I feel I am mourning her.
She is nowhere close to the mother I knew, just weeks beforehand. She forgot lots of stuff. She is depressed and defeated. She doesn't want to spend time on teh phone with me. She has no questions about my life. When she asks about the children, hearing a response like "the kids are *great*", "we have been up to lots of stuff; Dov...blahblahblahblah, Shifra....blahblahblahblah, Ya'akov... oh, you need to go? (no apparent reason). Just needs to get off the phone in a matter of three minutes or so. Breaks my heart. I want to talk to her. But she isn't her. She has no responses. She hallucinates sometimes. She talks like she is 9 years old, my hurt mother.
I have lots of sympathy for her, but who will have it for me? I am losing so much of her. I *Need* her to want me. But it's not about me anymore. My mommy. Where are you? Get BETTER. This brain stuff CAN improve. It hasn't much yet, but it can. Let's hold onto that and pray. Tova Bat Sheindl.
I feel so alone without her.

My father is recovering slowly after his hip replacement. He walks with a walker, and needs light pain medicine only at night. He is doing well, Baruch Hashem! They share the same room in the nursing home... they both have their private physical therapists, and they share the same room. In the beginning mom didn't want him to. Glad that changed! At least they can talk a lot now, and for the time being, my father doesn't have any daily trips to make  to the nursing home. My brother who lives in Manhattan goes to visit them when he can, so that is good. To pray for my fathers full recovery; for those who are inclined- don't feel pressured! Shraga Feivel Bat Zlotke. You can pronounce approximately. The Big Guy will know who it is. :)


I have realized that since The Big Pain is smaller, I am more gun-ho to move forward with the reconstruction. When I visualize how my body could be after it, looks wise and pain wise, I have no wavering. It is not something that outside people will see any difference- my torso will most likely look the same. But when I look and see a complete stomach, even though it will have one straight scar splitting me in two sections, I will smile. It is OK to want a normal, symmetric belly right? And to get rid of the itchy, rashy skin graft? Aside from those things, and perhaps on top of the list is: I will know that it will be closed. Finally. I am realizing that I have wanted this all along. I feel that it will be only after that, that I will be able to do a seudat hodaya. It is basically a meal, large or small, publicly acknowledging to Hashem our gratitude for [this person] having experienced some sort of miracle to save their lives. It is a beautiful idea, and I have had the honor of being at one, just a few days ago actually, given by friends who made it out of a car crash unharmed.
So all this time passed, and no seudat hodaya for me... it is because it seems it's not been over at all. I have to feel some sort of closure- although there are health issues that will be with me always- that this would call for spiritual celebrating. I'd choose some prime blog entries and read them out loud.

But I am getting ahead of myself. (And I have to go to sleep.)
Tomorrow I have Dr. Z about the issue of the Lyrica decreasing, then going onto another more effective one. Then, off to the beach with my oldest son, Dov. Yayayayayay!!!!!!!!!!!!!!! (look at lower paragraphs for a description of that, because tomorrow is the today that I dreamed about yesterday.)
Wed. I have the second opinion for the reconstruction. This doctor, also in Be'er Sheva, but private, has been described as the "rising star" in plastic surgery reconstruction. We'll see what he has to say. I am so interested!

I am in the process of getting an appointment with Dr. Gur in Ichilov. I am looking forward to that because I like him very much, and Ichilov may have some cool system where balloon stretchers isn't in the scenario. Wouldn't that be great? So I sent my fax in and I am waiting for their response. And I will line up people to come with me, for each appointment.

(Again, here I am the next day: Got an appointment already for end of month... chuggin' right along....!)

 _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

New Day! Tuesday is now over, and I want to add just a little bit...

I am so well today, Baruch Hashem! I took off with my oldest son, and went to the ocean in Ashkelon!!!!! It was DIVINE. We played in the water, hung out in the sun. Unfortunately we *both* got a sting from a jellyfish, but I don't care. My hip is hurting from walking on sand (very strenuous!) and dealing with ocean currents-- lots of relying on the hip-- You wouldn't know that unless you were having problems with your hip, you know? It was a work-out, but a labor of love.
I have promised each of my kids a day at the ocean alone with me this summer. Looking forward to when I feel the good days. Gotta grab them up and savor them!

I have a friend who commented on my last blog, about the waffling I wrote about for the reconstruction surgery. I know I *want* to do it, but I'm scared of many things. In the end, I am pretty sure I'll do it, but "pretty sure" isn't Sure.

OK, well, I am now off to opinion doctor #2... I'll write it up afterward, of course!

And that's.... life!
Savor today.

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