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.

Inflammation: it's not over. (with a surprise ending!)

I was just looking through some old blog posts looking for something specific, and I wound up clicking on some interesting titles, having forgotten what they were about. MAN, I have been through So. Much. It's flippin incredible. Reading old posts, I inspire me! I hear lots of times that my blog inspires people. I don't quite understand why, but reading back (this evening I was at the beginning of 2013, right before Ya'akov's BarMitzvah) shows me how strong I really have been. Raising young kids through all the surgeries and infections and more surgeries. Whoa. It's just been so crazy.

And it's not really over. I mean, so much is better, thank Gd. The right thigh joint surgery was definitely a success. I feel that very confidently. I have confirmation from the physical therapist, too. I now have physical therapy once a week, and hydrotherapy once a week (in a pool in Soroka). It's a good groove. Oh, and just started back to Tai Chi, slowly. It is very taxing on the thighs, actually. But it's good. I'm going to get stronger with all this.

So why would I say it's not really over?
I looked fine when I went to synagogue this morning. Chatted with everyone, smiled all the time, had an easy, pleasant time. I walked back and forth on my own two legs, baruch Hashem! Not to be taken for granted.

What was behind the scenes, though (although I did share it with my close friends) is that I was drugged up on Advil. The fever and strange thigh pain was back. It hit on Friday, like a bomb, with a quite sudden deterioration, just like last time when I went to the hospital (three weeks ago). I still don't know what it is, but it has flare-ups, it's inconsistent. This particular pain has been going on for well over a year, but 1) I had assumed it was part of the joint problem, and 2) the occurrence of it with fever just started happening. Since the joint has been fixed, now, by the process of elimination, I know that this is a separate problem. It's upsetting.

I have reason to think it may be endometriosis, but that can only be truly diagnosed with laproscopic surgery, and that is ***~~~out of the question for me~~~***. The idea of another surgical procedure makes my stomach churn. There is no real cure for it anyway, so why bother with the trouble of diagnosing it? I have had multiple ultrasounds of the area, CT, and MRIs, and nothing showed up. As I said, it's been going on for a long time. The diagnosis of endometriosis is also by process of elimination, but the thing is, I have almost no common symptoms of it. Just the sharp, hot kind of pain, and low grade fever (which is unusual, and last on the list of possible symptoms). Once, in my sessions with Miriam Maslin with the biotensor machine, it picked up endometriosis, so that is also why I am leaning in that direction. It may go away with menoapuse, but I'm not there yet.

(note from Miriam Maslin: Just for clarification, the machine that I use is actually called either a Frequency or Bio-Resonance Generator.)

It's the fevers that make the pain kind of scream at me, not the pain alone. Pain alone I am familiar with, and if I know it is benign, I can just take Advil and go about my business. But the fevers, indicating severe inflammation, give me a red flag, you know? I can't ignore it, as much as I want to.
As of yet I'm not sure how to proceed. Regular western medicine is out- all the diagnostic tests didn't show anything, and I am not going through lapproscopy, or going on hormone pills, so I don't want to go there. I'm going to go non-conventional. It's time.

Why is my body so inflammatory?

BTW, I haven't mentioned this yet, but since my last surgery almost 7 weeks ago, my throat hasn't been right. I lost my upper singing range. And, now when I swallow, I have an extra "click". It doesn't hurt, but bugs the heck out of me. I wonder if the breathing tube during surgery made scar tissue. I've had a lot of breathing tubes in my time. Every general anesthesia.

Again, inflammatory process?

~*~*~*~*~*~*~*~*~*~

And last, but *by no means* least, some intense, huge news:

There has been a lawsuit with us against the hospital going on for quite some time now.
The other day, I signed on the settlement. It's good. It doesn't take away what happened to me, but Gd made good on it for us. I am grateful. One huge milestone. I'm also eternally grateful for it to be over.

My John Hancock

Three of us... not our direct lawyer, but a partner.

Six week summary

pretty roses in bloom...

...a gift from a Shabbat guest

I realized something new today about Soroka hospital...

There are roses to smell. I'm not kidding. I have spent many days, weeks, and even months here (I'm at the hospital now, just for physical therapy, don't worry), and never noticed that before. There are rose bushes outside of the physical therapy building, on the way to what used to be the labor and delivery building. I feel so fortunate today to have noticed that and stopped to smell them. I am so poetic, right? :)

I noticed them because I am feeling fortunate. Seldom does someone walk around here feeling fortunate, all the more so, me. I just had my first physical therapy session since the surgery. On the one hand, it is really absurd that it took six weeks to get me the appointment... the wheels of paperwork and confusion run deep in this subsidized health-care system. On the other hand, I had six weeks to chill out after surgery. I did a teeny bit of physical therapy at home, knowing what to do because of having been through this surgery already twice. Not much, though. My muscles are very, very weak. I tried to do Tai Chi last week and paid for that for the next two days. My legs are really weak. They shake with tremors at the littlest challenge.

However, the physical therapist was inordinately impressed with the progress she saw. After reading my medical history, people expect a basket case. Then I walk in. :)

I told her the main things that are bothering me these days is the range of movement deficiency, and power; like sturdiness and stability. She assured me that those are things that will improve with the work we'll do. Yay!

Notice I didn't say “pain” as something that is bothering me? Well, it's not that the pain from the surgery is totally gone, but it's so much less, I am still in a state of shock that it healed so well. The original pain I walked into surgery with is completely gone, and what remains, I believe, will disappear also in a matter of time. I learned some exercises I need to do, and yes, it hurt, but that's OK. It's physical therapy, it's supposed to hurt or else you wouldn't need it. I needed to put the exercise bike on a really low setting, and couldn't do that for more than five minutes, but it'll improve.

To my surprise (but not the physical therapist's), the left leg is actually weaker than the right. The surgery this time was on the right, but my left leg, which has borne the brunt of all the other surgeries, is actually weaker. One problem that is happening is like a “whack-a-mole” game: the lymphedema. That is on the left side only. I haven't been able to wear my pressure garment for the lymphedema since the surgery, because the right thigh joint, and incisions, are too sensitive (still). The pressure garment is torturous for it. So, without wearing that, the swelling and pain comes around, and I guess it causes me to actually favor the left leg at those times. I may have to go back to lymphatic draining. Bleh.

I'm starting hydrotherapy on Tuesday! Looking forward. I really loved hydrotherapy in the past.

These days the most difficult thing is that I have returned to my regular driving routine, along with all the errands, and I am profoundly exhausted by the end (or middle) of each day. I am at that place that I am able to do all the things I used to do, but doing them all is too much for me. I remember this stage after each surgery. All of me has to get stronger, not just my legs. Sometimes by the end of the day I can hardly put one foot in front of the other to keep moving. There are days that I just can't, and the kids have to be more independant. I get light-headed, my eyes gloss over, and my body can hardly move. I plop myself down on the couch, or in bed if I need to, and the kids are usually quite understanding. At those times, I can't read to Azriel at bedtime, and that is hard for him to accept. He got used to me being very available while I was recovering- we read the entirety of "Alice in Wonderland". That was fun. Thank Gd, though, that they are older now- all my other surgeries were when they were much younger, I always needed a nanny, and it was all much harder. We had so many nanny's- a regular revolving door. (when I got NF, and those early days of surgeries and hospitalizations for infections, Azriel was 1 1/2, and Dov was 8 1/2, with two other kids in between. Geez, that was so hard.)

Anyway, bottom line?

I believe that this surgery was successful.

I had my doubts in the beginning, because of the necessity to change the type of surgery based on the fact that there was no cartilage in the joint. I was worried that something wrong happened. What I found out, as if I needed another reminder, is that things that look like mistakes at first, often aren't really mistakes at all.

On being fearless and gaining strength

It's so hard *not* to write about the daily murderous terror attacks that are happening here. I almost feel like I shouldn't write about it because, well, many people's opinions are that I chose to live here and raise my family here, and nobody is making me stay. I'm not writing this in order to defend my decision (but I will defend it with all my might and soul). The fact is, though, that Jewish people are getting stabbed, deliberately run-over, and shot, every day in my country. People are dying. Children are mercilessly orphaned. Outside of Israel, of course, also, but I'm talking about here... home. I don't have to tell you my intricate feelings about this all. I am not scared, though, and I teach my children not to be scared. Cautious, yes. Unfortunately, everyone who looks Arab (whether or not they are) awakens suspicion in us. It's just reality. Sorry if I offended you. (am I sorry?)

It's hard to blog about my "stuff".
I am torn up by the losses we have suffered at the hands of terrorists, many of them children (the terrorists, I mean). Today a 21-year-old woman, cut down in the prime of her life.

Today we had to make a trip to Jerusalem, to a meeting at Ya'akov's yeshiva. We took the notorious "tunnel roads" because it is the quickest way to the area of Jerusalem where his school is located. There have been "incidents" on that road. We went through the standard check-points. Scary, strange, real and surreal at the same time. I worry for our soldiers posted there. They are bullet-proof on their entire torso, and neck, and are armed to the max, of course. They look in our car windows as we approach, and quickly size us up and wave us on. As we pass, the guards are already looking two and three cars behind us. It could happen any time, anywhere. Stuck in road-work traffic further down that road, we were stopped completely. Vulnerable. Who are the road workers walking by our cars, and where do they come from? They are looking directly at us in our car, in our eyes. Are they going to "snap" and suddenly become terrorists? That's how it's been going lately. I could go on and on about my feelings each and every time I read of another terror attack (daily). I won't, though. You get it. We are cautious, vulnerable, defensive, but not scared. I won't be scared in my own home land. And yes, Israel will always be my home.

My recovery is pretty much back on track, thank Gd. At this point, after a normal day (not like today with the traveling) the pain is now markedly *less* than it was before surgery. That is a miracle in itself. I am healing, and getting stronger. I have a lot of strength to build, though. Believe it or not, physical therapy *still* hasn't started. It's astounding how the health services can drag things out. I have been given the run-around about getting the proper approvals for physical therapy and hydrotherapy, both of which the orthopedist ordered. It's now almost five weeks after surgery, and NEITHER form of therapy has started, regardless of my daily phone calls to the clinics and managers. It's really crazy. When I go back to my surgeon, he's not going to be happy. It was supposed to start at the two-week point. As far as I understand today, at least the regular physical therapy will start soon. Don't know about the hydrotherapy. I may have my surgeon's secretary call my health clinic. Maybe she can make waves for hydrotherapy.

In the meantime, I am going for walks every day, trying to build up some muscle again.

My sleeping is completely off, though. I go to sleep relatively early, wake up in the middle of the night sometime, and find it almost impossible to fall back to sleep for three hours or so. I want to get back on track... although I don't know what is throwing it off track in order to correct it....

The flare-up I had last week with the fever and pain is gone now. I know it will flair up again, though, because I have had it many times before. The next time it flairs up, I just have to be more aggressive about getting it imaged during the flare-up in order to see what it is that is hurting so much.

I am so sick of going to get tests done and fighting for my health care. I don't want to pay any attention to this flare-up as long as it's gone. It's just all too much sometimes. I am happy ignoring things that aren't immediately pressing. I know that's not the right attitude, but it comes from being overwhelmed with health-care chores.

Tomorrow (I think) I'm going to start driving again. The trip to Jerusalem today took a lot out of me (Robert drove both ways, I'm just talking about the traveling itself and the activities of the day), and I hope I am up to regular life tomorrow. If not tomorrow, than soon. I have a lot of pain and exhaustion now- today is the busiest I've been on my feet since the surgery.

Overall, though, I have to say, I feel that things are going to be good in the pain department. I already feel that the surgery alleviated much of the pain I had from the right side. When I rehabilitate the leg more, and slowly gain strength, I can see a future of easier days, with the help of Gd!! Five weeks in, and I feel quite optimistic. Maybe by spring time I'll actually be able to do a hike with my family? There's a dream...