Friday, June 22, 2012

Progress and pain.

I don't know what to make of this...
Well, first of all, before I get into the bad stuff, I want to say that things have been *good*. Seeing these two coaches is really helping me get out of a big slump. I am working on getting my life more evened out. I am so focused on my medical issues that other important things get minimized.

First of all, I have some progress on my book. I have changed the entire opening section. It is still only in the works in my brain, but I will write it soon. I want to open with the healthy Sarah-- not start it with the illness. That is a HUGE change-- emotionally as well as the physical book itself-- in how I am seeing my life. I am starting to give due respect to my life pre-NF. I was really doing so much good. I was strong, and could make long-term work-related commitments. I saw families through their pregnancies and births for three and four months for each family. I helped women ease into natural birthing. I walked on stages, hundreds of times, wearing a black dress and heels, and carrying my horn. I confidently played enumerable concerts. That was me. The NF took over and turned me into a sick person. But the days before NF-- I was *strong*. That deserves to start this book.

Also, I have a goal of playing my horn. I hope and pray that I can do that. It has been over a week of deciding to do it, and I haven't found a time when it can happen. But it is on my radar, for the first time in I think two years.

There is other important progress also, but it has to be enough to just say that there is a third category of progress that I won't write more about... too many readers. :) But I think I may update every now & then and call it "Progress subject #3"... sound good?

OK, three progress areas!! That is so wonderful!!!!!!!!! Now I don't even want to write the bad stuff.

But I will.
I have a good buzz on me at the moment from topping off my Fentanyl with the lollies that I have.

Why would I need extra narcs? Because I have been having a HUGE problem with nerves. it has been progressively getting worse over about three days, today (Thursday) being the worst. Like yelping-out-loud worst. It is so unbelievable, that I have been checking the areas in the mirror fairly often, expecting some infection to start showing it's evil signs. But (alas?) there is no infection. If there was something, well, we could eliminate it with antibiotics, and *poof!* it'd be taken care of.

No, not so with nerve pain. No fabulous drugs to drown that out. We try with the drugs we know of, but that's all it is; trying. So, with the Bad Thing hurting so much today, I took (at Robert's suggestion) a booster of Fentanyl. My patches are 50mmg, and this booster was about 200mmg, just to give you a reference point. Truth is, I think I took more. The lollies are each 400mmg. I try to take only half, but it is approximate. Tonight the whole thing came off the stick at once, so I tried to rescue out a chunk, so as to not completely dose myself. So, whether I got 200mmg or 300mmg, well, it's approximate. I didn't take the whole 400, I know at least that.

But it still hurts, believe it or not. I am pleasantly buzzing, but still have pain, albeit slightly dulled. As long as we don't see any signs of infection, we have to assume it's nerve pain. This is the kind of nerve pain that riding in a wheelchair is ruled out. All I can do is try to remain still and it won't hurt. Much.

I saw my pain doctor the other day, and he said that in two weeks (after he gets back from taking time off) we may start to get off of Lyrica and start a new drug for nerve pain. Now **that** sure sounds like fun. Who here remembers how fun it is to lower my medicine dose? The withdrawal, revealing the pain it is covering... then going up on another new medicine.... not knowing what to expect with side effects or allergies or anything.

He is against me doing the reconstruction surgery. He believes that we will find the right cocktail to get me out of pain. He is a Medicine Man; that is what he does. He goes around, literally sometimes, to patients who cannot get out of bed, getting people out of pain. He is "against surgery"-- his own words. "Especially", he continues, "in your case. More surgery is not the way to go with you, Sarah. Don't despair, we will find something right for you".

Well, Dr. Z, as much as I completely respect you very highly, I am going to plan the reconstruction surgery. It is time, and I am ready. And we all have to pray that it will be Good.

I put in a call to the plastic surgeon today. Left a message... where is his secretary? Nobody called back yet. I will keep calling, though. I am skeptical about getting it done this summer, although in some ways it would be the best time. I know he is really busy-- he is very highly regarded for his reconstructive abilities. One of Shifra's friend's mother, actually, is waiting for him for her breast reconstruction after a mastectomy. As much as I don't want to push in front of her, or anyone else who has pressing, often deeply tied to emotional needs, I do hope that he will give me preference somehow. He has known me since NF. Over the years, I have consulted with him many times. He told me last time-- over two years ago-- to get the mesh put in there, and then he will reconstruct the area. Well, the pain from the mesh surgery took at least a year to recover from. It was worse then the original NF pain. Actually, that (mesh) has been hurting again, also, of late. I think the Lyrica used to cover that as well, and no longer does. Then, the year after the mesh surgery (last year), I wasn't needing the reconstruction so much-- the Lyrica was working, as long as we kept upping the dose every three or four months or so.

Medicines work, medicines don't work. Surgeries work, surgeries don't work.
I tried medicines.
I'm gonna try surgery... one. more. time. 
(but waiting for the surgery to happen may mean needing to switch to different medicines.)
I have faith that Hashem wouldn't let me make a mistake.
I have faith that Hashem wouldn't let me make a mistake.
Everything at the right time.
Make it stop.
In the right time.


  1. I'm so glad that you've got a coach who is helping you. Full sympathy on the pain though. Life really just stops while you wait/hope for it to go away, doesn't it?
    Mary Margaret

    1. yes, exactly. Everything just stops-- plans don't happen, husband gets over-extended and exhausted, life is in suspension.

  2. Sarah, my hips have been very painful the last couple of days, I have no idea why, but I have thought of you a lot! Mine are getting better now fortunately. Hugs!

  3. How old is your baby? Over a year, I am pretty sure, right? Women's hips move back into a regular, stable position over the first year after birth. Could be that? It can ache when this happens. Glad it's over. Send some of that "over" over here, would'ja?

    1. Yes it feels a lot like the achy pains I got all the last trimester of pregnancy. I think I did too much standing and walking over the weekend (Marko's first birthday party!) in not-the-best shoes. Chiropractor in 30 minutes time anyway, that should help :)

  4. Feel well and keep up the good work!
    Shanni Reiff Profesorsky

  5. Coach came in the right time to shift the perspective. It is alwazs good t start with good staff in book, but also in life. It is difficult to live full life with pain - it is impossible if you compare it with your life before NF, but if you look at it as your life now (and it is you life now) than you have more free space to manuever. Just use good minutes trough the daz to do all you can, and don t think about rough minutes ... don t spoil good moments with fear of bitter ones. I have cancer and I think it makes my life better and more G-d wants my life has to be. NF is just another step in your life, not finished, not something for the rest of your life. It will be cured, healed and one day become a past. Think of that, think how blessed you are with zzour children, husband, friends.......
    it is something what I think a long time, but never wrote it, so it is too long and difficult, but I wanted to say what I think and feel. You are not NF, you are wonderful human being, talented woman, mother, wife, musician, .. so many wonderful things, take pain killers as much as you can and try to live happy moments completely free

    1. That's the thing-- I think I *do* let the pain and --sorrow, in a way-- get in the way of the good moments. Well, that's not completely true in all cases, but it happens a lot I guess.
      I do look forward to the time when this is actually behind me. It will always be a part of me, but behind instead of front-and-center would be GOOD.
      Thanks so much for your input!! I so appreciate optimism, whenever, and wherever it comes from!!!

  6. may hashem guide you along the right way with your very positive outlook! shabbat shalom. rochel

  7. Hi Dear Sarah,

    So glad to hear you are starting the book with the healthy you ‘cause that’s who you are.

    Sometimes I’d say to the kids: this isn’t the real you (for ex. if they are … fill in the blank – crabby, small minded, etc.) tell that fake kid to go away!

    So, the real Sarah is the healthy Sarah.
    I wonder if tape recording your ideas might work for you. You don’t want to go through hours of recordings, but maybe verbalizing in addition to in-your-head planning may help solidify your ideas.
    I am, of course, distressed about the bad stuff. Pls. G-d that will end.
    I love the horn idea.