Tuesday, November 24, 2009

The layers of reality

OK, me and Gapey, we're not getting along these days. I have been trying to be a good host. I have weaned myself off of the pressure garment for three months now, since the arthroscopic surgery. After the surgery, I couldn't wear it; too much swelling and soreness. The when I could theoretically wear it, I decided to keep trying life without it and give that a chance. No prosthetic pillow filling the space, clothes straight on the graft. Dorit wanted me to do that, and so did the OT (scar management) doctor in Soroka, about 10 months ago. They said I was too dependent on it, and Gapey doesn't need it anymore. Turns out, though, that *I* do.

I can't stand the way clothes feel or fit without the pressure garment. But, I still choose not to wear it. There is freedom that comes with not wearing it; not adding another layer all the time, not feeling constricted by this tight thing on my waist and legs constantly. But, aside from that, I hate the feeling of Gapey "au naturale". Can't live with it, can't live without it.

Lately it has been so itchy, it makes me crazy. Every day, sometimes twice a day, I am putting on the skin graft grease that I got from the dermatologist, and it doesn't seem to help. And it still hurts, too. Itches and hurts, and I fiddle with it all day (trying to be subtle), and it doesn't seem to help.

So, this leads to the reconstruction discussion (say that 10 times fast). I want to do it. But there are no guarantees that it will not itch and hurt afterward. The proposed guarantee... (I am using that term with all of us knowing full well that there are no guarantees in life... except that Gd is with us) ...The proposed guarantee is that first the stomach wall hernia will be repaired. Then the space will be protected with a muscle layer and a fat layer, and closed up. I just remembered that when I do consults with the plastic surgeons, I have to ask how this will effect the bursitis. (will the bursitis ever go away? PT is so painful, I haven't been doing it. Not a great thing, I realize.)

If I go into it knowing that I may still have a chronic pain condition and scar itching afterward, but that my goal is just to straighten out and close the area, attempting to improve that aspect, then I can go into it. I *think* overall, in a few years (perhaps less?), I will be happy I did it. But if something goes wrong, I could be in a bad situation.

(not to mention the possibility of the PVNS returning. But, I'd try Gleevec if the tumor did grow again).

The old saying goes "if it ain't broke, don't fix it". Well, it's not "broke". I can live with it; I am living with it. But it doesn't feel good.

What I do know, and am trying to live with, is that I may... probably will, always have pain and discomfort in my lower left belly, thigh, and hip. I also know that all of you have the knee-jerk reaction to say to me "don't say 'always', Sarah, you don't know, this will change, it's not permanent..."

But the slowly sinking-in reality is telling me: get used to it, Sarah. life has changed. Stop waiting for it to change back. Go on from here, this is what you got. Live with it, otherwise you'll be stuck. Do the reconstruction surgery if that is what you want, but don't expect 100%. There no longer can be 100% with your health.

But you know what? No matter what happens, there is another reality that is also sinking in: I get to know how it is to be a stay-at-home mom. I like it. It is good for my kids, and it is good for me. I see, as the weeks and months go by, how good it is for them. *I* need the extra set of hands, whoever our babysitter happens to be at the time, but I am realizing that all the kids need is *me* (and Robert, of course, but it is me all afternoon & evening. He comes home late most nights).

It all sinks in when it is supposed to. This is it, this is life. The good, the pain, the love, the tears, the highs and the depths of lows. It sounds so cliche, I know, but this is IT. I am learning that the body pain is all part of it, and for me, it's not going away. I'm not at peace with it, but I am trying to integrate it.

My kids are benefiting from my constant state of recovery.
I'll end this entry with that t r u t h.


  1. Wow. I guess you had to hit a low point a few days ago to come to this profound realization about accepting the reality for what it is now, and even to savor it (your being home with the kids). I hope you can get back to your career in a few months, but you're savoring the here and now. That's huge. Print out this post and keep it somewhere handy, so you can remind yourself on the difficult days. Also, discuss the itching with the dermatologist. Who knows? He might be able to give you a special cream you didn't even know existed! Kol hakavod to you.

  2. Sarah, I saw this on Janglo. Perhaps this could be a good opportunity to share your writing with a larger audience. I doubt she pays for content, but it doesn't hurt to ask. Best of luck, Michele

    INFO4U: Your chronic pain story wanted
    Posted by: "Loolwa Khazzoom" lkhazzoom@gmail.com
    Tue Nov 24, 2009 11:35 pm (PST)

    Hi everyone,

    I'm looking for stories of living with, managing, and transcending chronic
    pain, for my blog, Dancing with Pain
    naging-and-transcending-chronic-pain/ I'm very interested in stories about
    living with and healing from chronic pain in Israel, among other topics. I
    personally have experienced the pros and cons of the health care systems in
    Israel and the USA, vis a vis chronic pain, and I'd like to hear other
    people's comparative experiences in Israel and their countries of origin.

    Also, among the many stories I hope to represent on my blog, I would like to
    share the experiences of survivors of suicide attacks and war-related
    incidents -- individuals who not only live with chronic pain, but who also
    navigate through feelings of rage, powerlessness, fear, emptiness, etc, that
    follow violent assault, potentially exacerbating the experience of pain.



  3. Sarah, I'm wondering if the itching is from your skin healing. My c-section scar used to itch a lot as it healed. Now it almost never itches.

  4. Sandra- I know about scar itching (I also had a cesarean 4 years ago). Indeed, the skin graft is all scar tissue and is still in active healing (2.5 years later). The itching may never totally go away, that is the nature of grafting. We'll see. Today it's been a bit better. Maybe it is effected by the rainy days we had. Now it's sunny... who knows.