Smaller big issues

"When I met you many years ago, you came to me with such huge issues, there was no room to talk about how you can get enough sleep, and the idea of sleeping unmedicated wasn't a possibility. We needed to keep you alive, walking, and safe. Look where you are now. Your last surgery was a total success. Your pain is all but gone. Now we can finally fine tune these other things which are hanging on from the really bad times".

...said by my general doctor (gp) today.

I went to her to deal with my cough. And to up my migraine medicine allowance monthly, and to share with her how my sleep is so messed up, my life feels un-anchored. She was so "pleased" to be dealing with the sleeping problems and migraines finally. She sees it as progress. I told her I am seeing the "vitamin doctor" again, who I had seen years back. The goal is to get off sleeping pills. I had blood tests done, and everything hormonally is fine, so that isn't the cause of my sleep problems. The cause is from eight years on sleeping pills. I pray that this doctor, the "orthomolecular" doc- Dr. Mel Litman can help me with this awful withdrawal from sleeping pills that has to happen. I already started a pretty intense regimen of vitamins and minerals (although I'm hating taking more pills).
He's also doing gentle cranial-sacral manipulation to hopefully guide the throat cartilage back into place.

One thing at a time, though.
Right now we have to deal with this crazy cough.

We're beginning the process to clarify what may be going on. We'll look at it from three angles, one at a time:
1. lung/chest x-ray (already scheduled for Tuesday)
2. if/when that is clear, we'll go onto the second theory, which I personally feel may be the problem... that it is related to the cartilage dislocation in my neck/throat area. Goes like this: when I saw the ENT at first, a few months ago, for the cartilage/swallow/throat click problem, he asked me if I was having any reflux or heartburn. I said no. I never get that. But, in the coming weeks, indeed some reflux did start developing, and the cough started getting increasingly intense.
My GP thinks that the cough may well be reflux, stemming from the cartilage problem, which may be the result of poor head positioning at my surgery four months ago.

Solution?
We'll try reflux medicine. If it works, we've found the problem (but not solved it until the cartilage is re-aligned).

3. If the reflux theory proves a dead end, she wants to do allergy testing and treatment to see if the cough is an allergy.

So there it is. We'll hopefully get to the bottom of this.

I loved my doc's optimism this morning. You don't get that much in our health system- optimism. Or rather, bolstering the patient, commending them on how far they've come in taking care of their health problems. I've known her for 6 or 7 years, I think. I switched to her after my NF, and first cellulitis episode which my previous doctor thought was nothing. Oh, no wait- actually, it was when he thought a little tumor in my thigh joint was nothing. That was it.....

Anyway, my doc now is not an alarmist at all. Cool as a cucumber no matter what I walk in and present to her. And there have been some *very un-cool* things over the past years, as you all well know.
This is the same doctor that gave me a standing ovation when I told her I am finally off the Fentanyl after five years.

So, operation "deal with bad cough" is underway. Let's hope it doesn't get complicated.
(this is almost parallel with operation "deal with sleep issues, wean off sleeping pills", which I find much scarier and intimidating. But unfortunately necessary at this point in life.)

living parallel

I've realized it's parallel... life. Not going in an upward direction, not heading for some point. If you are lucky, it doesn't go downward. It is parallel. Mine is, anyway. I thought I was heading for certain points... reclaiming my talents, etc. But I'm not. There is no high point to aim for. It's all parallel. There are high points in life, for sure. But we don't aim for them, they happen. They pop out of the parallel.

We (people who deal with chronic medical issues) watch the world go by, watch our kids grow up (at least, the lucky ones do), we do as much as we physically are able to do, but the goals just never seem graspable. I'm fairly sure I won't ever play in an orchestra again. That hurts my heart, but it is reality. And as far as returning to any other sort of normalcy, well, I think I have it the way I am ever going to have it, right now.

Yesterday in Tel Aviv, at my orthopedic surgeon, I got the "all clear". The healing is going well after surgery, and I can expect more, steady improvement over the course of the year. That is *good news*. My right thigh joint is on the right path. The pain is very minimal, and things are moving the way they are supposed to. I will get back to stability with regards to that leg. It will continue to get stronger, and then it will level out and no longer be a problem. Don't get me wrong, I am happy about this. It brings a "low" situation back to parallel.

Regarding other issues that NF (and Fentanyl) left me with:

Sleep problems. Big time. Awful sleep problems. Awful headaches. It started with the insomnia from the 10-month withdrawal period from Fentanyl, and hasn't gotten back on track. If I can sleep and wake up during regular hours, life will be parallel again.

Gapey: rashes and small infections on a fairly regular basis. I always wonder if this or that little painful nodule is the one that is going to lead me again to cellulitis. It hasn't recently, thankfully. That situation is a little lower than parallel. I am also always uncomfortable without the prosthetic pillow. I may have to start wearing it again, but that brings down other things about quality of life. We're looking for parallel here.

Also sub-parallel regarding gapey is that my bronchitis is back. The internal bleeding episode from last time (two weeks ago) has barely fully drained (there are still purple marks), and the pain is coming back again because of the coughing. That one clip inside gapey- the one of many- the one I feel strongest- is again getting irritated. I am taking cough medicine to try to keep on top of not coughing, but I am still coughing.... hard. Kept me up last night, made a migraine get harder. That was after I returned from Tel Aviv. Gapey hurt so much. So yes, it is good that my right thigh joint healed well, I am eternally grateful, and I mean that with all my heart and soul. I don't take anything for granted. But the rest, the fallout from NF, I just try to maintain parallel. I am a very strong woman, and can handle A Lot. And I fight these things that hold me back because of the deck of cards that I was dealt.

But maybe fighting isn't what we are here to do. Maybe just parallel is OK.

I recently changed the subtitle of the blog- I doubt anyone noticed, except the person who encouraged me to take his suggestion. Instead of "Rebuilding my life...", it's now "Building my life..."
That is a subtle, but powerful change. I realize I am no longer trying to piece together what was. I have to let go of that. I am just living parallel after what I could build out of the rubble. I built, it got built, and now I try to maintain parallel. Does that make any sense?

I have to go get more cough medicine, and Excedrin for the impending headache. And put more antibiotic cream on my skin grafts, hoping that the raw, thin skin won't get angrier.

I am strong, I have what it takes to live a long, good life. Parallel will be just fine. I guess.

Overwhelmed

We have new next-door neighbors. They are really very special people, with young kids. The cool thing is that one of the kids is a good friend of Azriel's in his 4th grade class! The two of them are are very excited.

We had them over for Shabbat lunch.
In our conversations getting to know each other, she told me about her extremely busy, productive life. She is in university, and working full time as an engineer. And five small kids at home. (I think she's at least 10 years younger than me, maybe more).

I told her my "before" getting sick life, and "after" life. I didn't actually go into any details of what happened to me, it wasn't a private enough setting. I just said I got sick 8 years ago, and have been through many surgeries and complications. I told her I'm not working at my careers now, for 8 years. She said "ah, so you're home". All-of-a-sudden I felt like a non-'go-getter', someone who gave up. I know that isn't the case, and I know she doesn't really know me or my family well at all yet. That's irrelevant. I told her that in reality, I'm not home so much. I have been granted the gift of being with my children in the afternoons, but many mornings I have to deal with all that it takes to organize and run a life of being a patient, and staying in as best shape as possible for my family (and self). I have many doctor appointments (which eat up TONS of time), tests, physiotherapy, and paperwork, just to keep myself in good working order. This is something that someone who has never had to deal with this sort of life could understand.  It is very individual, and that means lonely sometimes, and it takes a lot of belief in myself and inner strength in order to not feel inadequate in the presence of someone who is living a similar life to that which I had to leave. Meaning, society's view of what it means to be "productive". She told me she's dying for a vacation, or even a small break. I told her that she needs to take one whenever she sees a possible window of opportunity. What I didn't say, but was on the tip of my tongue, was that if we don't take a break when we need to, Gd will make us take one. I didn't want to scare her, though, or lay it on heavy. (she won't be reading my blog, they don't speak English).

In the meantime, life has been so heavy. Just so heavy. I have been to a few specialists about my throat problem, and it seems to be diagnosed as a "cricothyroid dislocation". That would explain the bump that happens every time I swallow, and the cut off higher range of my voice. Apparently it is not from the intubation tube, but rather my head being in a bad position for the 4 hours of my last surgery. What to do about it is still unknown. I am grateful that it isn't painful condition. That is a pure gift from Gd- a medical condition that is not painful. It's just that it is really disturbing my daily life.

I have to say, though, this specialist that I saw yesterday was as amazing as his friend was, the ENT who referred me to him. It was again like an hour consultation, and he didn't charge me *anything*. As "luck" would have it, an esteemed colleague called him while I was there with him. He took the opportunity to explain to her my case. She will now take my case, and she is the one who diagnosed it on the phone, just by hearing all the symptoms from the doc I was with. I don't yet know if there is a treatment plan. I pray there is, and that it is non-invasive. I am planning to go possibly to a "cranio-sacral" therapist, or... I'm not sure what else. I desperately want this problem resolved, it is really making me crazy.

The other heavy stuff in life:
One of my children is suffering in school, and things are so, so hard for him. I have a counselor in the picture who deals with placement of kids in the right schools for special education, and I pray she will be able to help us. It has been **very heavy** and hard on all of us.

My friend's cancer came back. This is the friend who was in a coma last summer when I was there with her almost every day. I am one of her "people"... she has no family here. She will need a lot of support. I can give it, but sometimes it is just so overwhelming.

My physical therapy is Hard. I know that is good, but it's so hard. Both my legs need strengthening, and I am getting stronger slowly, but it takes everything out of me to do that sort of physical work-out, daily. It still hurts. I just want to curl up in bed and lick my wounds, you know?

I think that's enough for now, don't you?
I have a migraine coming on... haven't been sleeping well, partly because of this throat click thing- it is so annoying when I am trying to fall asleep. It feels quite unpleasant to swallow, and it is amplified in my head so that it is an actual noise to me.

Sometimes things are just so heavy.

Will I ever be "me"?

The surgery is over.

The lawsuit is over.

I'm exhausted. There are times I'm not, but pretty infrequent. Today (Friday, a notoriously busy day) it was all I could do to get out of bed to eat and drink. I am back in bed now, and Robert went out to buy stuff for Shabbat because I won't be baking or cooking today. He cooks the meats, and side dishes as well. I usually do a few side dishes and all the baking (challah, deserts). "Usually" means since after NF, of course. The usual before that was entirely different.

I've been trying to work hard on physical therapy myself. I want to badly to be stronger. I think I may have hurt myself, though, so I gotta take it easy. The leg muscles are so weak that my knee buckled (while I was doing pt on the stairs) and now hurts when I go up or down stairs. I just have to rest it. I am back to doing Tai Chi also, which is so good for me in so many ways, but it is really hard on the thigh joints. It seems, from my perspective, that it is mostly thigh joint. Lots of slightly bending knee, and leaning all your weight on one foot. Strenuous, but oddly balancing. My teacher tells me ways to make it less strenuous, and I do that when I remember.

My thoughts recently are ambiguous. I wonder if I can ever get back to playing horn, or doing birth training, or writing my book. I am just. So. Tired. I want all of those things, though. I want to feel productive again after all these years. I just can't pick myself up to start anything, though.

Shifra helped me clear out my practice room. It's our bomb shelter, but I painted it (a while ago, not now) and used it as my doula room where I'd meet couples for classes. It's really a lovely room. I also practice horn in there when I needed to. I practiced in my room, too, though. In the mean time, I said to everyone that it is no longer a dumping ground, it is to be a sacred space that gets respected and kept clean. I have intentions to start doing birth classes, and start to play horn again, and continue my book. But so far I am just too tired. I am just trying to keep up with the needs of my kids and my house (and myself... physical therapy, hydrotherapy, etc). I guess that's really all I can do for now.

I guess the question is, when does recovery end and I get my activities back?

I could have had horn playing work next week- my partner from the orchestra called and asked me if I am ready to play. Had to turn it down. I'd need at least a month to be at a decent preforming level.

I want to set a goal, like at the six month mark after surgery (April), but I am afraid to let myself down. It's happened a lot. Yes, I have been through a lot. But it is still hard not to feel I am letting myself down when I can't do what I want, and love, and am good at, and can make a difference doing.

I still have pain, but less than I had before the surgery, thank Gd. But still have pain. In both hips. And nerve pain acting up recently. And a bad rash on my skin grafts because of the winter dryness (I am trying to take care of it). And the clicking thing in my throat when I swallow, some sort of scar tissue or something since my last surgery (from the breathing tube. I haven't checked it out with my doc yet). And lots of headaches because I am often so tired. And an occasional inflammation and low-grade fever, on schedule with my monthly cycle.

I don't mean for that to be complaints, just like a inventory of sorts.

I guess we can all see why I am not doing the things I love.

I am sad about that. I am really good at what I do. I just can't do it.

Yet?

(ps- please don't tell me that this is my "new normal"... I don't want to settle for that.)

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...

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.

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.