Sunday, November 22, 2015

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...

Wednesday, November 18, 2015

Is it the flu, or something more sinister?

Boing boing boing.... my life on a bungee cord.

Got back in the driver's seat on Saturday night. It was... ok. a little sore using my right leg, but all-n-all, doable. I decided that I'll ease my way back "into the saddle" and take on some of the driving. My doctor said to wait about a month, and it's been about a month now.

So that was a good plan, for a day or so, until it wasn't a good plan.

I still don't really understand what happened, or is still happening, but on Monday, my body took a huge nose-dive. Felt OK in the morning, then a fever developed in the afternoon, with a strong pain in my lower right torso, upper thigh, near the surgical area. I was (and still am pretty sure) that it wasn't exactly the surgery that was the problem, though. If I had an appendix I'd have thought it was that (appendectomy was in 2009). The pain is close, but I thought it was possibly ovary pain.

I had been having stabbing pains for a few days in that area (since Saturday), and when the fever developed, I was sure an infection was taking root. In my life, fever + pain means infection. I've had so many instances of it, I am pretty professional at reading the clues from my body. I get very scared, as if NF, or some other heinous infection, is right around the corner. I call it the infection ghost... but in this case I'm not sure if it's a ghost. That's the thing about ghosts, a part of our primitive brain thinks they may exist. At least, when my kids are scared of things like ghosts, that's my theory.

So, with this fever and pain going on, I decided to go to my doctor. I was trying to decide if I should see a gynecologist or my regular doctor, but that problem was solved when neither of them were in their clinics yesterday afternoon. So then I thought I'd go to a new urgent care clinic here in Be'er Sheva, that is a much better option than the ER at Soroka. I took my son there once and was really impressed. But, since I thought I may need a gynecologist, I called ahead there to see if they have one on board at that clinic, and turns out they don't.

So, after taking all these things into consideration, I decided to go to the emergency women's clinic at Soroka. It is a separate ER specifically for women's issues.

I forgot to say that the fever spiked sometime after my decision to go pick up Shifra; she was out of school early. I drove the car to pick up Shifra, and then [she talked me into] doing an errand with her at the mall. There are so many things that all the kids are asking me to do with them. They are used to having me around a lot, going out at the last minute to get something done, shopping with them. They all want me to shop with them for different needs. I guess a month is a long wait. It's been really good for me not to be running out and doing things all the time, I've actually been grateful for the opportunity to heal. But, I need now to figure out how to balance nothing with everything.

Our family friend who is one of the generous people helping out with the driving actually came to the mall, on foot, to take over the driving. He didn't know I was sick, but just called because he was ready to pick up Shifra (I had totally forgotten to tell him she got out early). I was grateful not to drive, I was feeling very dizzy, disoriented, and dealing with this weird sort of pain. Thankfully the mall isn't so far from my house, and he was so kind and considerate as to come meet us there.

He dropped us off at home, went to get Azriel from school, and with the two kids home, he took me to Soroka.

The long and short of it is that the women's ER doctor didn't find anything wrong with any internal parts. That's good, of course. But it didn't resolve the issue. She wrote on her recommendations that I should go to the regular ER to continue to clarify what may be the problem.

So after hemming and hawing trying to decide if I should just go home, I decided to go to the main ER. I was feeling so awful, I just wanted to be home, but I was still scared that something is going on. And since I was there already, I'd follow through and try to see what is up.

When I got to the main ER, it was a zoo. There were like 50 people in the waiting room, it was loud, smelly, and just a nightmare. I took a number and it was like 30 numbers away from where they were. I know enough about the ER to know that it could be many hours before I was seen. I honestly could not handle it. I just couldn't be there. I was dizzy with fever, in pain, and not prepared to sit in those hard chairs for hours on end. Oh, and I forgot to say, the hospital does not consider anything below 38.2ºf (around 101º celsius) to be a fever. I had 37.9º (around 100c), so I knew also that they wouldn't relate to that as anything abnormal. (did I ever tell you that when I had NF I didn't have a fever?)

Our friend had just found a parking spot for the car, rather far away, but I said we are turning around and going home. I just couldn't go through with being there one more minute. I think I drove him a bit nuts, but still kind and tolerant, he got the car and we left.

I figured that either the night would go fine or it wouldn't. If I was really sick, I'd know it pretty soon, and if it was going to pass, I'd have a decent night's sleep (which would not have happened in the hospital!).

Fortunately the decent night's sleep prevailed (after a few choice medicines to help ease the fever and pain). The next day (today, Tuesday) I called my health clinic to see if I could come in to see my doctor. She was in, but unavailable. Lovely. If I had gone to the clinic in person, I'd just have waited until she could see me. Again, though, I was feeling sick and in pain. Robert had to go to work, and there was no way I was going to drive. Cab is a possibility, or our friends, but I decided just not to go.
The clinic's secretary and I are pretty good friends. It's been many years we've been doing the health clinic dance together... Israelis will know what I am talking about. If you are sick, be friends with your health clinic's secretary. She can make things happen.
So, she did an instant-messaging thing with my doctor while I was on the phone. I asked questions, she wrote the answers, I asked more questions, gave more facts, she sent it to my doctor and read me the responses. Unusual, but useful. In the end my doctor said that if I felt I needed antibiotics, she'd put in a prescription. What I think I really need is  picture of what is going on in the area where it hurts me- an ultrasound or x-ray or something. That will happen if this doesn't go away.

I didn't pick up the antibiotics. The fever was up and down a few times today, just enough to make me feel junky, but a tad better than yesterday. One of the considerations I always have is that I am allergic to so many types of antibiotics, I am afraid to take them for fear that I will get allergic to that one and have less available to me.

So now I am just hanging out, feeling not-so-great, dealing with a weird pain and not knowing exactly what to do, or if I should see anyone about it. So much has happened to me over the past 8 years since NF that either I panic, or I try to ignore it. I am not even sure what "middle ground" is anymore. I think I am taking middle ground at the moment... I'll take the antibiotics if I feel it's necessary, or I'll get better without them. Only time will tell.

I just have to trust my body to tell me what's good and what's too much. I'm sure it'll be pretty soon that I am driving full-time again. I am also acutely aware of making sure that full-time is not quite the same as it used to be. I put in a request to get Shifra a free bus pass to and from school. Right now she has to pay for riding the bus (city bus). The students who get free bus passes live three kilometers or more from the school. We live 2.8 kilometers away, so technically she isn't entitled to one. I got paperwork together to appeal for it, based on my health issues and our bank issues, so we'll see if they grant it to us. Every little bit helps.

Oh, and our dryer died. So it's rainy season and I am hanging a zillion little clothing items on the rack outside, hoping it won't rain and make me dash out to pull the laundry rack in.
Not a large issue in the scheme of life, compared to what is really going on in our world these days, but in my little corner of the world, it's a drag. Every little bit helps, as I said.

Good night. It's all going to be OK. Because it has to be.

Thursday, November 12, 2015

I sprung a leak

My spirits are plunging. 

For all you who have recently asked me how I'm doing lately, you probably got some version of this: "OK, up and down, good days and bad days, pain minimal, tired a lot..."

I really do try to keep on the bright side. I know this is going to pass into easier times. It always does.

But my spirits are crashing.

I was hoping it wouldn't happen this time. I generally have a good perspective, and went into this surgery knowing that it is for a good goal, to be as out of pain as is possible.

My kids are doing great. My husband is fraying at the edges with almost all of life's details on his shoulders. People are helping out in generous ways with their time and energies driving my kids hither, thither and yon.

One problem is that the physical therapy hasn't started yet. National health insurance is dragging their feet, and it is way past the time I was supposed to get started. Orthopedic surgery is such that if you don't get started with it at the right time, you wind up not optimizing the positive effects of the surgery. I call the health clinic every day, have given in all the necessary paperwork, and the request is "being managed". I was told today that it does have the red flag of "urgent" on it. I'll just keep calling. I need that movement, though. I need inspiration.

I have been doing some exercises myself, I've had this surgery before I know what it needs. But I haven't been doing it enough. Probably because...

my spirits are crashing.

I have been going out, walked the dog a few times, even went shopping with Shifra yesterday for a few necessities she needed (that took hours longer than planned, thanks to a cashier who was unable to make both lobes of her brain work simultaneously).
I am getting around. As I tell people, pretty minimal pain. No pain is the hope.

It's only three and a half weeks after surgery, I tell myself. Chill out. It's all going to be OK.
Rainbow in Mitzpe Ramon, taken by Robert

I have a few close family members who haven't been in touch, and who, I am left to believe, view me as weak, not pulling myself up by the boot straps after NF, and volunteering for needless surgeries. They don't read my blog, they see it as too negative. Once, one of the people I am referring to asked me why I don't write about good, happy things in my family? Perhaps about Emma, our dog?(I'm serious). When I referred to some of the numbers of readers there are on the blog, I was told the reason for that is inhuman cyber "bots" who are sent to randomly hit sites all day. 

That view of Sarah, being the one who succumbed to a life of illness, who chose yet again to undergo surgery, who wasn't strong enough of character to keep working at her careers, who gave up,... that view is one which I have to fight off, like a terrorist, like that which sucks out the very life force of a person. And once that life force springs a little hole in it and starts leaking, the pain that accompanies it is greater than the summation of all the physical pain I have endured over these past eight years.

So, when we talk, I will always tell you that things are going OK, I am not lying. What I won't tell you is that my spirit is leaking.

 That doesn't have a spoken voice, only a written one.

Thursday, November 5, 2015

It gets harder before it gets easier

Bam... the hard days come on like a truck slamming on the brakes. Today I feel like I was in front of that truck, and it didn't completely stop in time.

I just don't expect it... truth is I don't know what to expect. Yesterday I started up Tai Chi again, very carefully, and amending the movements to simplify them for my thigh joints. The teacher is intuitive and patient, and I thought it went very well.

After Tai Chi, Azriel had his orthodontist appointment to get his braces put on. By the way, I am still not driving. My Tai Chi buddy drove my car to the lesson, and then our good friend who has been doing a lot of driving for us took us to Azriel's appointment and back. Azriel got his braces. It took over an hour, me sitting in a hard chair, it wasn't easy for either of us! His mouth is sore today so he stayed home from school. I couldn't take care of him much, and he refused to go to play with a friend after school was over, so he's having a boring day with me. Hardest part is that he hasn't been able to overcome a fear of being in parts of the house where I am not. We have a big house. It makes things frustrating.

Anyway, yesterday... I got to sleep at a normal time, and slept all night.

I woke up in a heavy amount of pain, and so tired that actually waking up was a chore.

I have no strength. I've been recovering for 17 days, and there are some pretty good days, and some awful ones. The awful ones feel like, yeah, I've been run over by something. I feel kinda fluey, and achey, and the post-surgical pain is stronger. Sometimes it takes a lot of inner-dialogue to keep myself in check, and not to let myself think I am developing an infection. As long as my fever stays put, I am not letting myself worry. I am way past the post-op infection time frame. Doesn't matter to my sub-conscious, though.

Grateful for friend's help, grateful for my husband, who is unfortunately starting to fray at the edges. It's very hard on him.

We'll pass this... I'm going to get better and have less pain. I try not to get too down. It's a hard road.

Tuesday, November 3, 2015

Two weeks after surgery

That first week after surgery was really ok! I felt strong, albeit in pain, but I felt strong. In fact, I was feeling so well, I was shocked. All the other surgeries I just remember feeling like a dish rag for months thereafter.

Now two weeks have past, I can report that on the bright side, the pain is lessening, and healing very well. I haven't started physical therapy yet (waiting for the insurance company to get it underway), but I am walking pretty well, very minimal pain. And the pain I do have is *not* where it used to be before the surgery. That specific pain is gone. What I feel now is post-surgical pain, which I am expecting will continue healing.

But O. M. G... I am so profoundly exhausted, sometimes I cannot even see straight. I am sleeping a lot. I am not doing much during the days, mostly I'm home morning/noon/night. Good friends are doing the driving. Shifra had been telling me for a while that she needed new school shirts (they have to wear any solid color shirt to school, with the school logo/emblem ironed onto it). She doesn't have much free time, she practices ballet three times a week, and is in a special science program after school also. So, yesterday I asked our friend if he had time in his afternoon to take us to the store to pick up school shirts for her and for Azriel.
That went smoothly, everyone got what they needed, and we got home. I made a fresh dinner (not just left-overs with a pot of rice), and wound up having a late night. Actually, the late night was because of all four kids- phone calls with Dov, Ya'akov, and a few organizational calls for them, test studying, and combing for lice (teachers request to all parents).

I am so insanely exhausted today, I honestly don't know how I'm going to get out of bed soon to welcome the kids home and make food. Going out is out of the question.

I had forgotten what this every-cell-in-my-body-is-drained feels like. It's post-surgical. Everything is exhausting. I don't know how long it'll last, but I am just telling myself that I need to listen to my body, rest when I can, and don't push it. I want to help this surgery to be successful. That includes starting physical therapy ASAP. Don't know when I'll be able to drive again, but when that happens, my energy level and recovery start playing on a new ball field... a harder one.

I am supposed to start taking a medicinal food-type supplement now, prescribed by my surgeon. It's for acute arthritis problems. It's powder which dissolves into a glass of water. I'm supposed to take it for 90 days... the possible side-effects are scary (a few of which are possible dizziness or exhaustion!!). I don't like starting new medicinal things, but this is supposed to help the surgery be successful, as well, so I gotta stay with the program.

OK, going to try to get it together- the kids will be busting in the door soon. Azriel has his guitar lesson, Shifra has ballet, and the beat goes on. Tomorrow I have to bring Azriel to get his braces put on...! OK, one day at a time.

Gonna make a cuppa coffee........
I really just want to go back to bed for another few hours. That is what my body wants. Planning on an early night.