Finding a new balance

I think that life, post NF, for me, will always need a deeper level of quiet/down time than it did before. I know it's sad, but I can't really listen to music at all anymore, except specifically in a gym, to *my*  music in headphones, if I am working out (which I just started back to do a few days ago!!). It's partially the PTSD- ever since then, I have needed a quiet as possible environment. Now, since I've been mourning my parents for more than two years (they died a year and four months apart), the Jewish laws and rituals of mourning dictate no live music, or listening to music for enjoyment at all. I am OK with that. I have missed some nice concerts I wish I could have gone to, but in general, the quiet is good for me. At Azriel's BarMitzvah we had a DJ (no live music), and when I asked my rabbi about if I can dance at the BarMitzvah, the answer was no, but I could be there. So, I didn't dance (but I wanted to).

Our counselor, on a phone appointment with me the other day, asked how much quiet time I think I need... a few hours a week? A day? A week? I answered I felt like I needed a day per week. But I don't naturally take that time for myself. I usually have to have my body force me into it... which is what is happening today.

Yesterday was Yom Kippur, the holiest day of the year for us Jews. It was a thousand times different than last Yom Kippur, thank G-d! Last year I was in horrible abdominal pain, and didn't leave my bed all day. I did fast (25 hour fast is mandatory for Yom Kippur), but I probably shouldn't have-- I was *sooo* sick by the end of that day. This year, totally different! I was in synagogue almost the whole time, and my fast went pretty well, no big issues. I stood almost all day with the prayers, as is customary, and only near the end of the day did I start to get into some pain. I keep saying that the pain shots got me out of pain about 85%.... but that 15% actually isn't nothing. After a while on my feet, the abdominal pain ramps up.

Then, while already in pajamas ready for going to bed early last night, I got a call from my good friend who's daughter just gave birth a few weeks ago. Her daughter had been having some problems breast feeding, and I have been helping her out when I can. I've spent a few different sessions (2-3 hours each) with her working on the problems. So when her mother called me desperate to help her daughter last night, even though I was exhausted from the fast, I got re-dressed and went over to her. I wound up being with her until about 2am. There were many many issues to sort out... getting her a breast pump from a friend, and since that was on American power, I went to another friend to borrow a power converter, coming back to sterilize the pump parts and take care of the hurting new mommy with a budding breast infection and fever. Not simple. I definitely burned the candle at both ends, but when helping new moms is involved, I have a VERY hard time with boundaries. It's part of why I'm not working. I feel my horn playing, although it satisfies a different part of me totally, is possibly more doable, if I can put boundaries on how much I do on a given day/week. I tend to overdo things.... have you noticed that trait in me over the years?

So, today, I'm down for the count. Been in bed all day, although we have a dinner engagement with family soon which I am looking forward to.

Not only down for the count because I emotionally need it, but my body has been putting up red flags for a week now that I have been trying to ignore. My lymph nodes in my left armpit feel like a golf ball and are painful, I have a little infection on my skin graft (AGAIN!!), and I have to report here a month-or-maybe-more long pain that is getting me worried that something sinister is going on in my left leg again. I can't lie on my left side in bed- my upper thigh- femur actually- hurts. That's where there is all the nerve damage from the NF, but it's a new-ish pain, and not going away. I am slightly worried about an infection in the bone, like osteomyelitis, or something else I don't yet know about. I've lost some range of movement in that leg, too, recently. I decided to tell my doctor all these things today (spending the day in bed can make me come clear about what my body's messages are saying), and I'll start trying to figure out what is going on. Maybe it's just the nerve damage in that leg acting up.

I really want to ignore it all and be not worried. I have that "infection ghost" thing in me, and it's like having a shadow behind you which is 10 times your size and moving like a monster, and you're trying to ignore him all the time. I am so paranoid about blowing things out of proportion that I want to ignore my body's messages. I believe I am inherently healthy, and getting stronger since the pain shots (which, I may only have one more month of enjoying the effects.... we are working on finding an anesthesiologist who can do them here...). Anyway, I put the Manuka honey on the little skin graft infection today, and I'll re-apply it tomorrow (and so on), and hope it'll go away.

So, by hook or by crook, my body takes my quiet day. Ideally I'd be planning it into the week, but when I'm feeling good I don't necessarily need it. As I wrote that, I know it's BS. I always need it. I don't always get it, though. Sometimes migraines force me to take a day, but it's not a *good* day, it's forced by pain, and suffering in a dark room with nobody talking to me. I'm hoping that being 100% gluten free, dairy free and night-shade vegetable free will help the migraine situation. The jury is still out. I've had some doozies recently.

But this passed week I went to the gym for the first time in well over a year, I went grocery shopping, also first time in a year, cooked up a storm for dinners, and cleaned, did laundry, and was basically *in life*. That is a miracle. And I'm grateful.

(recently I re-posted my NF story on Facebook, I'll repost here, too. There are enough people at this point who don't know the whole background, this explains it well. It's from the NFW website, where there are many, many other people's NF stories, and an opportunity to donate to our foundation.
https://tim-hayden-7rt5.squarespace.com/klein-sarah-1/)

The state of The Union

If I had a nickel (or shekel) for every time someone said to me "I wish I could take your pain away"...
well, money wouldn't help these problems anyway.

Nobody can  take my pain away. Dr. F is doing his best, but it hasn't happened yet. I have had days here and there of amazing improvement, but somehow it always goes back to pain. That's where I'm at now. Pain. Abdomen.

But you know what is actually worse than constant pain?
The eroding of a really great relationship. I'm talking about what, in my blog titles I call "the state of the union". My marriage.

I have to write, but without going into too much intimate detail. I just have to write. I have to let others know that illness takes it's toll everywhere and anywhere it can.

It makes relationships unequal. It's been this way now for ELEVEN years. And we've only been married for 20. The first 9 were us working hard, buying our house, having four babies and living extremely sleep-deprived but good lives.

The second half of our marriage, where we are right now, has been insidiously undermined by illness and hardships that most people will never understand, for 11 years. Our kids are all 11 years older. They are all more independent. We've done our best within an almost impossible set of circumstances. We've had a lot of help from our friends (that's putting it mildly... without our friends I can't imagine where we'd be now. I just cannot imagine). Neither of us have much family here, and the family we do have were also very busy with building their lives and raising their kids.

Nobody talks about what happens in a marriage/family when one partner is always (or nearly always) not well. It's an imbalance in huge proportions. Both partners are overwhelmed with their burdens... one in pain or not well (with all the family's needs in mind while they are helpless to effect changes), and the other taking care of the kids, the house, the paperwork, money issues, shopping, driving, and everything in between. My kids started doing all their own laundry at a pretty young age (Azriel is the last holdout with that, he still doesn't do his own, it's time I pushed him to do that. I have wanted to spoil him, or keep him sheltered more from the hardship that is our family. He's my "baby", and I am guilty of spoiling him).

When the ill partner is the female, things are even harder. Men are not natural caretakers, women are. It is well documented that in marriages where the female is the ill partner, the rate of splitting up is much higher than in marriages where the man is the ill partner.

No, Robert & I are not planning on splitting up. Just to put your mind at ease.
But things are really really really really hard. (cue: tears. me. right now. lots and lots in recent days/weeks.)

I can't remember the last time we had a date night. I just haven't felt well in so long. And he stopped thinking of planning them. It's always pain... body pain or headache pain. Or pure exhaustion. Or all three.

We had a Shabbat all alone three weeks ago for the first time probably since we had Dov (almost 20 years ago). Was it awesome? No. Life is not perfect. BY FAR. But we did manage to have it be good somewhere from the middle of Shabbat and on. Havdallah (the end ceremony at the departure of Shabbat) had us dancing romantically together.

Fridays have been awful, though. I often come into Shabbat with deep circles under my eyes from the crying and hardships from Fridays. It's been this way for a long time.
The dark circles under my eyes don't seem to ever vanish.

I need things a certain way. I can't produce it all myself, I don't have the strength to do it all. Over many years I have learned to give up on much of what I thought I needed. I couldn't do it, so it had to be OK not getting done.

But I'm getting better now, and the imbalance is blaring. I'm getting better, but not better enough. I'm getting healthier, but not healthy enough. I absolutely need things a certain way, and it must be unilateral if others in the family don't care about those things. There are lots of mean, nasty things that come out of my mouth, especially on Fridays. Why especially Fridays? Well, often everyone is home, and Shabbat is coming, and it is the culmination of all frustrations from the week. Last week, if we didn't have guests coming to sleep over, I might have left. I certainly wanted to leave. I don't know where I'd go, but I was in a BAD WAY. Even when the guests came, I couldn't greet them, I was in too terrible a state. I was crying for hours and hours. I finally met them, with red-rimmed swollen eyes, apologizing for not being available sooner. I managed to put everything aside to welcome the Shabbat Queen, sing at the table, bless my kids, and honor Shabbat. But immediately after, the sadness came storming in again.

Things are not good. Not good at all. As I said, I'm getting better, but not better enough. I'm thinking that the rest of my life (and I'm only 50) will be this... not quite sick and not quite healthy. I pray that my treatments with Dr. F will bring me beyond that reality, but as of yet I don't know that. I had a treatment yesterday, and, like usual, I am drained, exhausted, and in pain today. A few needles he put in different places yesterday are really hurting... one is very bruised, right under my umbilicus, so when I lean up against a counter top to wash dishes or whatever it hurts. It'll go away, I am used to these things. I hope that he won't unintentionally burst that encapsulated cyst of infection in my abdomen. The infection ghost always haunts me.

I haven't been a very good communicator to Robert. I am closed off, hurt and upset, and feel so distant. He's hurting, too. My life feels like a complete and total mess, failure, useless, and unproductive. And I'm so angry at NF for taking so much from me.

And I can't open up to my husband, there are too many layers of hurt there from years of being forced to be the ill one and not having things taken care of the way I needed them, but didn't have a right to say because I am the ill one and everything falls on his shoulders. It's an impossible catch-22. He couldn't admit (to me) that he feels put-upon because where would that get us? Now I have a little more life, a little more health, and the proverbial poo-poo is hitting the proverbial fan. I don't have a lot of health back, or a lot of life back.

Dr. Frischman & his wife just left to go to the US for an unknown amount of time. Two or three weeks, maybe more. So I'm on my own to keep trying to heal with the Chinese medicines.

And I need other help. Maybe with Robert, maybe without. It'd be better with him, but that is up to him. I haven't had any counseling emotionally for a very long time, and I need it. We need it. Our lives are not normal. But it needs to be someone very experienced, very wise, perceptive, and spiritual for us to be able to relate to them. Our problems are multi-layered, and haven't been taken care of.

It could be that going off my medicines is triggering the recognition of these issues, but they were always there. It's just that now I am feeling it all, the psych medicines aren't numbing my feelings. It could also be that I am in deep mourning for the loss of both my parents over a very short time period. I haven't really talked much about that, but not a day goes by (or actually an hour) that my heart doesn't hurt from those (these?) tremendous losses. Sometimes I feel so alone and cold from such tremendous loss. Sometimes I feel so desolate and broken, it feels hopeless.

Please don't feel sorry for me. I just need to write things how they are. I need to write it for you, and I need to write it for me. And things are really, really hard. That's reality. It would be better if I could open my heart up to Robert. Let's pray for that.

Embryonic hope

Many of you wrote to me assuring me there will be better days after my last blog post... and... you were all right!

The amazing news: I had one PAIN-FREE day... I mean completely pain free, top to bottom, morning to night. And I was very active that day. I went shopping to three different stores, did a lot of food preparation and cooking, and I kept doing stuff, and I was FINE that whole day. It was really tremendous. I didn't think that would ever be possible in my life again. I was cautiously delirious with a sense of health and well being. I didn't write a blog that day because of the cautious part... I wasn't ready to buy the neon sign yet for my roof top.

The next day I did *even more* than the previous day. Lots of more. And then after doing all that more, I did some stuff in our yard that needed attention. OK, I pushed it too far, and the pain- albeit much less- started seeping back in. Was I testing my limits? Maybe, but I really think it was more like I am just dying to LIVE, and DO, and I got carried away. I paid for that, though. The following day I was immediately in pain upon awakening, and it got stronger throughout that day, the second day after the Perfect Day.

But, I had a perfect day. I thought there would never be a time in my life that I could say that.

Now I know (well, I pray) there will be more of them.

But for the time being, I have more hurdles to jump.

I'm having problems with my right kidney. Dr. F did a treatment last week which included invigorating the blood to go through my kidneys, and it seems to me that it may have been a bit too vigorous, but that's open to interpretation. My right kidney is the one with nephrocalcinosis (actually my medical charts say it's bi-lateral kidney disease, but I never had pain in the left one), and it also has some sort of "unusual" cyst which was reported from the MRE test. Anyway, my right kidney and back right flank hurt the days following the treatment (like hurt a lot). So After speaking with him about it, he made time for me to come on Sunday (yesterday). That treatment helped a lot. It was acupuncture, gentle massage, and a few other things including an entire change in my medicine regime. I left Jerusalem yesterday afternoon in much less pain (and less worry). 

(Thanks, CB, for your driving expertise and conversation!)

It seems that I may have some sort of stomach virus, too, although in the back of my head I wonder if my recent days of diarrhea have anything to do with a kidney infection. Time will tell, and I'm aware of my body and what it's doing. I seem to constantly have the infection ghost by my side. After you've been through NF and a half a dozen episodes of cellulitis and other nasty infections, the infection ghost doesn't leave your side.

After I came back from Jerusalem yesterday I had my first class of rehabilitative yoga. This is hopefully a form of body movement I can do... the Tai Chi is too hard for me- it's all on the feet, and very much belly-strength oriented. I just can't do it these days, I've tried many times, it hurts too much. And I love Tai Chi. I can't do much at a gym, so I decided to try yoga. I did a little research, and found someone who specializes in rehabilitative yoga for people dealing with difficult medical situations, and it is one-on-one. Yesterday was the first meeting, and I found I could do all the exercises I was given. I hope to continue on that path. I need to get some strength back, even though I'm still in pain. Not simple.

Overall I am improving with the direction from Dr. F. He has many modalities, and is extremely knowledgeable and uninhibited by my multi-faceted issues. My belly pain is overall less, thank Gd. Its going to take much more time, but as I keep saying, I am in the right hands. And you know what? He's my only treatment plan... all- I mean ALL- other doctors have turned me away. A few weeks ago I had a consult with one of the top surgeons in Hadassa Ein Karem hospital. I had lined up that visit months ago. It fell on one of the days I was living at the Frischman's for the intensive two weeks, but I went anyway. He listened to my story, he looked at my scans. His words were unbelievable coming from a top surgeon. He said to me "as you were telling me your story, I pictured a much bigger [בלגן was his word] problem before I looked at your CT scans. Your scans look good, comparatively to what it could be. I don't know what is causing your pain, but I have two things to say to you: I wouldn't operate on you at all. I wouldn't even do an exploratory, I wouldn't touch you. And the second thing is that I am telling you not to let anyone operate on you for any reason that's not to save your life. What you have going on in your abdomen is very delicate, and there is lots of scar tissue and adhesions, and it can't be played with. One wrong move and you could be in much more pain, and have much more serious problems for the rest of your life. I have never said this to anyone, but I am telling you- do not do any surgery for any reason other than to save your life."

It was as if his words were coming straight from G-d, not out of his mouth voluntarily. It was so uncharacteristic for a surgeon to say that, and this, from a very famous surgeon. What I heard: "I can't help you. I won't even do an exploratory. I'm sorry you are in pain, but pick up your marbles and go home".

I returned to the Frischman's house that day for my evening treatment.

Also my family doctor has no ideas for me. Nobody does. Only Dr. Frischman is extremely sure beyond the shadow of a doubt that I can fully heal while in his care. So that's my only treatment plan, and please G-d it's a good one. I consider myself fortunate to have been turned away by Western medicine, and fallen into the right hands.

I am doing very well with all the weaning from my pharmaceutical drugs, also. Today I cut back my Cymbalta again, to one dose before the end. When I started with Dr. F, I was taking 120mg of Cymbalta daily. Today I started on 30mg. And I am on half (or even less actually) of my sleeping medicine, and that is also going down. And I am sleeping well. I am so happy to be finally getting off this stuff, it's been a long time coming. I am having withdrawal symptoms, and waiting until they pass until I cut the next dose. I've been here in this withdrawal place many times, as you all know. I can do this, and I want to.

So while I am still having too much abdominal pain regularly, we are working on my whole health. Sometimes still having to put out fires. Like yesterday when I came with the kidney pain. But even that treatment addressed, with the Chinese medicines, many ongoing issues I have, not just the kidney problem. 

I want to play horn again. I will play horn again. And I want to help women have healthy, strong births. I will do that again.

But my future is still insecure... I don't know for sure that I will regain all my health and vitality. I haven't worked for 11 years, I don't have a retirement package. I don't know that I won't need lots of health care in my not-so-old age. I still have four kids to raise and Bar Mitzvah, give weddings, help buy apartments and cars to start them off in life, as my parents and Robert's parents did for us. We pay for private schools and yeshivas, and all the other trimmings of raising kids. I want to be able to help them pay their rent if they want to learn in university while they're married. My future is much more unpredictable than most other people's (although of course nobodies life is sure). If I am going to keep seeing Dr. F, our "safe money" will be eaten up by that. The gas of going to Jerusalem once or twice a week is also extremely expensive- more than twice the prices in America. And what about our future? I need these treatments now to live, to get out of bed every morning. For a while there I couldn't even do that, I was in too much pain. He has already helped me tremendously, but there is a long road ahead of us, of that I'm sure. You all know from reading this blog for years that the medical issues I have are deep and complex. I believe I can heal, but that belief is in it's embryonic stages.

It's for these reasons that we have decided to extend the fund drive. Your contributions have been amazing, and very, very humbling. I have tried to write personally to everyone who left a name on their contribution. And for the anonymous donors, you have helped more than you know. Thank you with all my heart.

We haven't quite made the goal of $5,000 yet, but it's very close. At this point my bill is higher, of course, and Dr. F is worth every penny. Please share the website on your Facebook pages, and other organizations you may know about that could assist. And please know that all contributions are deeply appreciated.

https://thechesedfund.com/cause/restoring-talent-buried-by-pain

My mission is not only to survive.... I've been in survival mode, putting out fires for these almost 11 years. Now I want to *thrive*. And to quote something I saw on the internet today "to do so with some passion, some compassion, some humor and some style". That's me, at my best. And I think I can reach my best. With the help of G-d.

Animosity comes to visit for Yom Kippur... coincidence?

It flares up from time to time, this feeling of animosity toward the surgeon.
It flares up when my quality of life is disrupted more than the amount I have grown accustomed to.

One day before Yom Kippur,
when we are supposed to be careful about our thoughts and words,
I'm feeling anger.
Hostility, resentment, scorn, antagonism, bitterness.

These feelings really aren't part of my life any more. I shed them long ago.

But they come back, in the realm of my medical issues, when I am suffering because of his mistakes.

I remember one of those hospital days, when I had NF, I told him I can't feel a certain part of my body. He looked down to the floor, casting an embarrassed air, and said "the whole area was involved".

Involved. Indeed it was. At the time, I had no idea what was in store.

Lymphedema has gotten really bad. Even the pressure garment is not helping.
Help is on the way, but not until Oct 25th, that was the earliest appointment I could get with my lymphatic draining lady from years past. Nobody does it privately, I have a very rare type (of course).

I just had a two/three day flu. Fever, chills, joint pains, headache. Lots of people have gotten it.
The night I was shivering with fever, though, when different things in my gut were hurting, it got really scary. We know bad infections here. I've been through hell. I know what it looks like beforehand, too. We get more scared than most people. (I call it the infection ghost)

I did go to the doctor the next day. She gave me referral to the ER, just in case I needed it. She wasn't sure, either. If things get worse, go. If not, then just get better.
Thankfully I got to throw the referral away today.

I still have one spot that hurts way too much. I couldn't even touch it the night my fever spiked, it hurt like it was on fire. That particular spot has hurt on and off for over a year, and we don't know what it is. We may never know.

So, with tomorrow being Yom Kippur, how do I sum this up?
I can't.
Life is messy. Not everything can be contained in a pithy statement or two.
I'll just keep on working on myself and doing my best to take care of myself and others.

May everyone have a Yom Kippur filled with sincere dialogue with The Creator, and have the strength needed to forgive those who have made a mess in our lives... and to forgive ourselves.

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.

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.

sexism in hospital treatment, and 10-day update

I rarely reproduce other articles here. Usually if something strikes me as interesting, or a point of reference, I'll add a link to my writing, but directing readers to an entirely different article is not a common practice for me. Having said that, *this* one deserves this space. I can so totally relate to so many aspects of it. So interesting to me to think about pain in men being seen differently than pain in women.

http://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

There is a [fairly minor] part where the author talks about retelling the traumatic story. All the people around you have heard it, possibly many times, in it's different aspects, but for you it's not over. You know you can't keep talking about it with the same people, but it still needs to be talked out and heard. That is why I started writing this blog eight years ago, actually.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

I wasn't going to write anything else for this blog entry, but as I said, the story just needs to be told. Not that there is a huge story coming or anything, but just that today is the first real downer-day (anyone remember Debbie downer? Just popped into my head. Google it if you don't know. Funny stuff!) since the surgery 10 days ago. I have been seeing very steady improvement from day to day. Today is actually the day I am going back to Tel Aviv to get the stitches out and have the first post-op check with the surgeon. And for some unknown reason, today has been awful. I am in so much pain, I even took Advil for it. I haven't taken pain meds at all with this, really. A few Advils the first few days, that's it.

Every time I get chilled (the weather is very slowly getting incrementally less hot... I hesitate to say cooler) I think a fever is coming on. It's not, but I still have the infection fear so deeply embedded in my conscience. I am past the time of post-op infections, so intellectually I know it's a pretty good guess that I am OK. But I always- I mean ALWAYS- have that lurking thing in the back of my head that wonders if This Is It. That "do I have another infection" ghost. It is my constant companion, all the more magnified after surgeries.

The pain I am having is normal, I am sure. My glute muscle is extremely sore, as is the whole length of my thigh muscle, as well as the raw-feeling joint. I know that things were cut and lots of work was done in that joint, and it's going to hurt as it heals. Until now I had been feeling improvement every day. That, to me, was extraordinary. I'm just disappointed to be in so much pain today. You can imagine. 

Another complint, if you could indulge me? It is hard to stay asleep at night- I am a side sleeper... usually right side because for eight years now the left side has been the bearer of surgeries, and is sore and off-limits to lean on. Now after surgery (as well as before to a certain extent) the right side hurts and does not let me roll onto it. I hate back sleeping, so I wake up after having turned myself over and caused myself pain- either side. I wake up tired and not wanting to get out of bed. Today I just didn't want to deal with the pain. I came back to bed after I ate. I'll get up soon to get ready to go to Tel Aviv.

It'll be OK. I know. I am just so sick of hurting, though. So. So. Sick. Of. It.

Thanks for being here for me. I don't say that often enough.