Inventory: Emotional and medical

I am reading a very wonderful, very powerful book at the moment called "My grandfather's blessings" by Rachel Naomi Remen. She is a wonderful writer, also famous for her "Kitchen table Wisdom" book. She is a psychiatrist who has been through many career changes, currently working in hospice, in California. I am receiving so many blessings from this book, it's helping me with my mourning. Rachel Remen says that if it was up to her, grief would be taught in kindergarten right up there with sharing toys.

I wish I had her as my shrink!

We have no guidance in our regular lives to navigate grief. It comes upon us by surprise, and we are as if left in a deep, dark, cold forest with no tools how to get back home. That's where I've been the past two months. In deep, dark grief. And it is up there with the hardest things I've ever had to do in my life. For the past few days, though, I have been feeling the fog lifting at times. I have had some times of feeling... a little better. A far cry from "well", but I can see times that the grief can lift, temporarily. If I only talk about it with a friend, though, the tears are as close to the surface as they have been over these few months.

I thought grieving for losing my health, careers, personal body image because of the tremendous wound damage from NF, losing lots of control over what happens in the house because I am sick so much, was a lot to grieve in the past nine years. While that's all true, since my mother passed away in June, and Sabrina in December, and especially because of all the details involved in Sabrina's passing, it knocked me down HARD. One of those "details" is the loss of not adopting Sabrina's daughter, Tessa. I'm talking about monumental details of that level. It's all SO. MUCH. I have been overloaded with sadness. I am still there, and I hope and pray the right kind of support will come soon.

Medically:

I need a secretary. It is so hard for me to follow-up on all the paperwork and appointment making and calling. If I want my throat problem fixed, I have to do two tests; one is a swallow test where you swallow liquids (Barium) from thin to thick, and the swallowing is recorded by a special type of x-ray. I also need a neck CT scan. Haven't scheduled either of those yet. Oh, and also voice coaching from the hospital speech pathologist because the upper part of my voice is shot since this whole throat fiasco started.

Then yesterday I was in Tel Aviv at the orthopedist. He looked at my last scan, but it isn't the type he needs, so I have to schedule an MRA for my right leg. Looking at the scan I had he commented that my left hip looks terrible, filled with fluid. He asked me what the oncologist says about that, I told him they said it was fine. No other comments. Didn't boost my security, though, that we are only looking at the possibility of one hip replacement... could be TWO. But I can't go there. I can't deal with that information any time soon. All I can do is try to make phone calls in morning times to make appointments and send faxes. These days, that's a lot for me.

But I did play horn the other day. Felt awful, sounded even worse I'm sure, but I did it. May do a shared recital with a friend in a year's time for my 50th birthday... we'll see...
And I bought myself a new (2nd hand) bike, and went riding with Dovie.

It's not all gloom and doom. But it certainly ain't paradise. I'd even settle for normal.

Will I ever be "me"?

The surgery is over.

The lawsuit is over.

I'm exhausted. There are times I'm not, but pretty infrequent. Today (Friday, a notoriously busy day) it was all I could do to get out of bed to eat and drink. I am back in bed now, and Robert went out to buy stuff for Shabbat because I won't be baking or cooking today. He cooks the meats, and side dishes as well. I usually do a few side dishes and all the baking (challah, deserts). "Usually" means since after NF, of course. The usual before that was entirely different.

I've been trying to work hard on physical therapy myself. I want to badly to be stronger. I think I may have hurt myself, though, so I gotta take it easy. The leg muscles are so weak that my knee buckled (while I was doing pt on the stairs) and now hurts when I go up or down stairs. I just have to rest it. I am back to doing Tai Chi also, which is so good for me in so many ways, but it is really hard on the thigh joints. It seems, from my perspective, that it is mostly thigh joint. Lots of slightly bending knee, and leaning all your weight on one foot. Strenuous, but oddly balancing. My teacher tells me ways to make it less strenuous, and I do that when I remember.

My thoughts recently are ambiguous. I wonder if I can ever get back to playing horn, or doing birth training, or writing my book. I am just. So. Tired. I want all of those things, though. I want to feel productive again after all these years. I just can't pick myself up to start anything, though.

Shifra helped me clear out my practice room. It's our bomb shelter, but I painted it (a while ago, not now) and used it as my doula room where I'd meet couples for classes. It's really a lovely room. I also practice horn in there when I needed to. I practiced in my room, too, though. In the mean time, I said to everyone that it is no longer a dumping ground, it is to be a sacred space that gets respected and kept clean. I have intentions to start doing birth classes, and start to play horn again, and continue my book. But so far I am just too tired. I am just trying to keep up with the needs of my kids and my house (and myself... physical therapy, hydrotherapy, etc). I guess that's really all I can do for now.

I guess the question is, when does recovery end and I get my activities back?

I could have had horn playing work next week- my partner from the orchestra called and asked me if I am ready to play. Had to turn it down. I'd need at least a month to be at a decent preforming level.

I want to set a goal, like at the six month mark after surgery (April), but I am afraid to let myself down. It's happened a lot. Yes, I have been through a lot. But it is still hard not to feel I am letting myself down when I can't do what I want, and love, and am good at, and can make a difference doing.

I still have pain, but less than I had before the surgery, thank Gd. But still have pain. In both hips. And nerve pain acting up recently. And a bad rash on my skin grafts because of the winter dryness (I am trying to take care of it). And the clicking thing in my throat when I swallow, some sort of scar tissue or something since my last surgery (from the breathing tube. I haven't checked it out with my doc yet). And lots of headaches because I am often so tired. And an occasional inflammation and low-grade fever, on schedule with my monthly cycle.

I don't mean for that to be complaints, just like a inventory of sorts.

I guess we can all see why I am not doing the things I love.

I am sad about that. I am really good at what I do. I just can't do it.

Yet?

(ps- please don't tell me that this is my "new normal"... I don't want to settle for that.)