Saturday, December 12, 2015

Eighty percent

Again I say, once the body gets thrown-off with a health crisis, it can never return to the equilibrium it used to know. I have seen it with so, so many people. And so it is with me.

The most we can hope for is that magical 80% I was told by the head of plastic surgery 7 years ago when I was thinking of doing reconstruction surgery after NF. I didn't do the reconstruction, although I wrote and talked about it for many years. I wanted it. But in the end, it just wasn't medically safe. The point is that he said at the time that if he could predict what I can expect for my future health, he said 80% of what I used to be is a realistic goal.

I *think* I am close to, or at the 80%. The right thigh joint surgery can be declared a success, baruch Hashem. That is no small miracle. Hashem really delivered me to the right surgeon's hands. But, as I lie in bed at this moment with that sinister, inconsistent pain in my thigh and a low-grade fever (and a slight migraine on top of it), instead of being at the Chabad English-speaking women's sushi night for Chanukah, I am acutely aware of the 20% missing. I am not where I want to be, but it just is what it is. Those of you with more than 80%, please take the time to appreciate your health and strength.

I am generally in MUCH less pain than I have been in the 8 years since I got sick. I honestly never thought I'd see the day that I can go through much of the day without feeling pain (while being totally off pain killers!!!!). It hurts to do the physical therapy, and I am also doing hydrotherapy, but it's the kind of hurt that I need, the building-up-muscle kind. I am fortunate I can do that. The Tai Chi is fantastic for me, too.

But this pain I have right now, which seems to be pretty clearly cyclical, is a mystery. I have it for two to three days a month, with low-grade fever. Clearly an inflammatory process, but I don't know what to do about it except take Advil and ride it out. Do I want to go to an orthomolecular doctor (who I have known for years, and for a short while a long time ago was treated by him, unsuccessfully, but so many people have such positive experiences with him), and spend a lot of money, and open a whole new Pandora's box of possibilities and trying to fix this (whatever this is)? Or should I remain fairly passive and in the dark about what this is until it starts screaming at me more? (If it will start screaming at me more, that is).

I am starting to put together the times I was in acute pain before the recent surgery; the times I could hardly walk. Those times I stayed at home. I always thought it was all part of the thigh joint problem and will all get fixed with the surgery [which I just had]. Now I can clearly define what *was* fixed, and what *wasn't* fixed. Who knew there were two separate problems in the same area?
I'll see my surgeon from the recent surgery this week. I'll tell him about it, he may order a test or two, but I don't think it's connected to anything he can do for me. On the other hand, I don't really understand *what* it is connected to.

Living with the 80% means just to take Advil and ride this out, knowing it is temporary, and sends me to bed when it happens. My house can run on auto-pilot for a few days, nothing terrible will happen. (That was indeed a lesson that took a long time to be true,)

If I knew that I could reclaim more of the missing 20%, I'd do it. I am just not convinced that that can happen, and spending that kind of money on private, specialized health care is a big step to take, just for the sake of giving it a try. Maybe I can just reconcile myself with my actual- quite fortunate- place in my health history, that I got here, 80% pain free. I'm still weighing out the possibility of going to this special [private] doctor, but I'm not committed. There is clearly some sort of inflammatory process going on in me, quite in the same place that the surgery took place, and quite in the same place which would be mirror image to Gapey's original infection. Interesting, if nothing else. But when it hits, it sucks. Pain and fever are scary in my life. All the other times. though, when it's not hitting me, I am doing great, really. Greatest ever in 8 years.

One more comment, unrelated directly to my health...
I have been fielding unpleasant (for me) comments about having settled the law suit. Not about the fact of settling, itself, but about the notion in people's minds now that we have come into money and can do all the things we always hoped we could do. I tend to shrink away with people's questions about what we will spend it on. That whole phenomenon has caught me by surprise. Nobody can possibly understand the tremendous debt we have been in as a result of me not being able to work for 8 years (ongoing...), and paying for 7 years of full-time nanny's completely out-of-pocket, and the literally hundreds of hidden expenses you can't fathom unless you have had to live through something like this. After taking care of debt, we cannot live any differently than we have been living, or the settlement won't last us more than a few years. It is a necessity of our lives, not given as a luxurious gift, like being handed tickets to a cruise. We will do some long-necessary home improvements, then put it safely away to slowly take from to live on. That is what it is for. We weren't making it financially before- it just looked as if we were, because Robert is good with crunching numbers and taking bank loans (and refinancing the house mortgage....). But the debt is higher than anyone can imagine, and this will give us air to breathe, debt free. But in order for us to stay debt-free, we must continue to live on a very conservative budget, like we do now. So no, not much will change outwardly. Financial decisions are just as difficult as they were before the lawsuit (if not more difficult in a way). But we get to be out of debt, and have our falling-apart exterior of the house re-faced and painted.

In short, please don't make a comment that we can afford this or that now because you know we have a settlement from the law suit. You don't know all the facts. I want to be able to help my kids, please Gd, with weddings and apartments, and whatever they will need to start off their mature lives. I now have three teenagers (and a 10-year-old), and it goes fast.

I am grateful for the settlement. And thank you for your enthusiasm for me regarding this settlement. But let's keep financial assumptions out of our conversations. It makes me uncomfortable. Thanks!

ps- this Chanukah vacation has been awesome. We didn't go anywhere. We all decided to work on the clutter in the house. We all worked on different areas, and I organized and hauled things around- doing "normal" things- not at all to be taken for granted! Shifra and I organized [a lot of] a few rooms in the house, got rid of a lot of stuff, and worked really hard. Next we are going to paint the play room. It sorely needs it. Ya'akov worked very hard on our back garden, weeding and trimming trees and generally making it fertile to start to construct a beautiful garden there! It is already planted with a pommegranite tree, lemon tree, louisa (lemongrass) bush, and an fledgling olive tree. It is fertile with tropical potential. It just needs some slate stones, more exotic bushes, and Robert wants a goldfish pond with lovely seating around it.We'll see about that..... But the holiday has been full of light and family togetherness. What a gift.


  1. All I can say love is that you are 80% kindness and 20% SOUL, what better 100% complete combination of a true life experience..!! <3

  2. A couple of years ago, you probably saw the "80%" as an impossible pipe dream. It is not just the surgeons and the miracles of modern medicine that have gotten you to where you are now. It is in no small part due to your own strength, determination, faith and heart.

    If you ever question why so many of us normal folks are so inspired by you and this battle of yours - that you have done so much to get yourself to the 80% is a huge part of it.

    PS - what you do with the settlement money is no more anybody's business than how anybody affords anything they do is. People with the chutzpah to say/ask things like that really need to take a huge step back and remember who they are.

    With admiration as always....

  3. Sarah, hope the fever and pain pass quickly. Glad to hear that most of the time you are feeling much better. Glad to hear other good news too. Shavuah tov, Chodesh tov, and Chanukah sameach! May the light of the Chanukiah spread and may you have clarity for the decisions you are thinking about making.