Thursday, May 27, 2010

spoke to soon.... roller coaster heading up

I am so tired at the moment but I have been needing to write all day. I had clients tonight, so I just have a little time to write before I conk out.

Turns out I spoke too soon about having a week without the roller coaster. Today I had to put on my seat belt when we finally got through to Rav Fisher to ask for a second opinion. The roller coaster started the steep incline up. I have been falling ever since.

In short, when Robert explained how the consult went with Dr Szold, Rav Fisher said that the proposed surgery is a very difficult and painful one. He actually used a stronger word which I will only write in Hebrew.."מחורבן" We then asked for a suggestion for a second opinion surgeon, and he said there isn't any better then him. Even if I were calling from France, he'd direct me to Dr. Szold here.
We asked if he felt it is necessary, and he said yes, to protect further future damage. My intestines are bulging against the skin graft, being held in place by a thin stomach wall muscle with a 6cm hernia in it. I do a lot of work on the stomach wall muscle; I work out 2X/week, did a lot of PT, swimming. I am strong, but there is no fortifying what is there.

God didn't make mistakes... our bodies need fascia with the skin. It isn't optional. At least not in the stomach where organs need to be held in place. I have seen NF survivors with totally no fascia on their legs, or arms. It looks mighty awful, but they are in no imminent danger of having organs pop out.

I want to run away from this surgery. I want to keep my head in the sand and make it go away.
I feel like; why go through a difficult and painful procedure to protect myself for an unknown future, when doing it now would set me back a long recovery time (2 months? The doctor says 2-3 weeks. For me it is always double with all I've been through). Opening myself up to possible complications, or for the surgery to fail completely. There is a chance of that. Then there is also the fact that I'd again have to wean off narcotic pain killers.

I have time to digest this and gather information. I also have to submit it to the insurance company; this is totally private, in a private hospital with two private surgeons (the gynecologist also for the gyn procedure). Thank Gd we got private insurance right after Azriel was born... a mere year before I got NF. Someone was looking out for us.

I also want to start looking for a live-in au-paire. I have enough experience to know that I will be able to really heal if I have that. I have to look, interview, try them out, and find someone. It is a lot of pressure, but there is time. The surgery is supposed to be on July 13th so far but that may change.

I *can* put this off... I am OK generally. The hernia hurts occasionally, and the bulge bothers me, but I am not suffering. I just am a bit scared to wind up like this man I mentioned before who didn't repair his NF stomach muscle problems, and now, nearing 60, he is a real mess and can't be fixed.

But to loose so much time, and emotional as well as physical pain... that could set me back a ways. My kids are small, and that goes away pretty fast. I don't want to mother them from my bed, or from living in pain. I am truthfully scared. And maybe my future would be fine without it. But we don't have that information, do we.

I have to go to sleep... More on this later.

1 comment :

  1. S,
    From everything you've said, it seems really clear to me that taking care of this problem now, before it gets worse, is a Very Important Thing To Do.

    I don't have to face the stuff in the short-term that you will have to deal with, so it looks different from here, but maybe that perspective will help...

    Your kids won't be small forever, but a) as you said, you have experience to draw upon, to handle this recovery time better than the previous ones, and b) your kids will need you when they are big too, and maybe having this procedure done will enable you to help them with their kids, rather than you winding up being a burden on them...

    Hope you feel better soon, and have a great Shabbat!

    Love, D