writing again, writer's block exit stage left

I've had writer's block. Not conventional writers block, though the kind that my mind feels confused about what to write about. It is a confusing time in life. I haven't written in a long time.

You know the surgery I underwent last June was completely life changing. It took me out of constant pain. My hip still hurts on a regular basis, but that's easier to deal with than the belly pain I had for years from the mesh in my NF wound area. You would think, on a simple level, I'd be happy-go-lucky, going for everything and anything that comes my way. But it's not like that.

I had a certain identity for the past 12 years. I was sick and taking care of my illnesses that stemmed from NF. This blog every week told the stories of the illnesses I had to deal with, and the frustrations and disappointments because of them. I needed to get out all the hard feelings of what it meant to live a life of a patient. Constantly at doctors, constantly looking for answers.

Now, I don't have abdominal pain. Baruch Hashem.

But I do still have CPTSD (complex post traumatic stress disorder), and it's acting up lately. It's been a year since the reactivation of it, when I had a huge trigger, didn't sleep for two months and wound up in the psych hospital where I stayed in-patient for one month, and out-patient for five months (what I used to call the "coal mines"). Somehow with these anniversaries, the body knows. I've been having flashbacks and haven't been sleeping well. The difference is now that I have a lot of support, I didn't have any (professional) last year. I have a psychotherapist, a social worker, a young student counselor, and a psychiatrist. Should be enough to keep me together, right? I've been horribly depressed without knowing exactly why. Its so hard to confront that and write about it. Mental health has a stigma that physical health issues don't have. I will always have CPTSD, but there will be a time it is not so front and center in my life. It is just very hard now. I'm having a lot of flashbacks. The body remembers.

I am playing horn every day now. I am volunteering with the Gedera orchestra (an amateur community orchestra about an hour away), and this week on Thursday I am playing a rehearsal with the Be'er Sheva orchestra where I used to work. That is exciting (and a little nerve wracking, because if I play well it could lead to more work with them). I am practicing about two hours a day (average, sometimes less), so I am getting back to the level I used to be, but very very slowly. Still sometimes my belly hurts in one specific place from the surgery last summer, when I play horn.

Swimming has joined my activities, I re-joined the gym for that. I decided that it was time to get back to physical activity, but because of my hip problems, the pool is the best. It's a small pool, but I can get a good work out in if I have patience. It's harder for me in the pool than in the gym itself because I can't listen to interesting things on my headphones to keep me going. So it's a little boring, but I do it because it's important to keep the old bones going. Often my hip hurts more that day, although it doesn't hurt in the pool.

The approval from the national health organization for the jewelry making job *still* has not happened. The wheels of bureaucracy run slowly in this country.

Next week is Sabrina's three year yahrtzeit-- memorial of the day she passed away. That is going to be hard. We are having the gathering here at my house for all her friends and family (and her daughter, who I haven't seen in ages).

I am taking more Cannabis during the days these days because of so much anxiety from the CPTSD. It helps a little. Sometimes I have so much anxiety that I feel like I'm jumping out of my skin. Sometimes swimming helps, sometimes practicing helps, but mostly it's just roving anxiety from the CPTSD. My support system is good, but nobody can take away the anxiety. It has to work itself out.

Mainly I feel like I am undergoing a total personality change since that surgery. I know that sounds weird, but that seems to be what is happening. I don't know who I am anymore without the definition of dealing with illnesses. It's a huge thing-- for 12 years I was sick, and I lost my careers (one of which I am getting back into), and now *poof* I'm no longer suffering (except with my hip sometimes), and it left a void. I know that must sound strange to you, but after so long, it leaves me with uncertainty about my days and my future. Not that my future was so secure when I was sick, but it gave me a goal; to get myself better. That took lots of energy and time. Now I have that time and energy and I have to find a new goal. I had a meeting with the national health organization (Bituach Le'umi) last week about the mechina (preparatory program for further higher education), and it only starts next fall, I missed the beginning this year. They did however decide to give me an evaluation to see what my strengths and weaknesses are to see if they can guide a career choice. But if my horn playing picks up a bit maybe that will be enough for me. For now the birthing work is on a back burner. I can do the birth preparation course, but I have decided not to do doula work for the time being. It is too physically straining, and I just had major abdominal surgery, and need a new hip. As far as nursing, I'm not as sure as I used to be. Things are up in the air, and that creates anxiety also.

There are always lots of tears at my therapy appointments. We are talking about my abuse from childhood and the ramifications on life. It is my hope that finally getting this out into the air and having my therapist help "hold" the big black rock inside me, that it won't rule me, and the next trigger won't starve me of sleep for two months and mess with my head. It's a long road though, and I never really dealt with this in any therapy I have had. It's time.

I've made up for not putting out a blog in close to a month. This got longer than I had in mind.
I have a feeling the blogs are going to be fewer and fewer, but like always, it's according to my need.
Now I'm going to get ready to go to the pool.

Really God? More pain?

I walked into the ER on Sunday with unexplained belly pain and loss of appetite which had been going on for a week. I walked out, about 11 hours later, after being poked and prodded, having x-rays and a CT scan done, and a gynecological ultrasound as well, not much closer to an answer to the riddle. A few things showed up, but it just pointed to needing more tests.

Here I am still with the same problem. My appetite is all but gone, and the pain and pressure in my belly really only subsides when I lie down. But we can't live our lives that way... at least I am trying not to. But it's very, very hard.

I can't really explain what it's like to try to incorporate even more pain into my life. I go between saying to myself that this is all temporary to hearing that little voice in my head that says "no, honey, it's going to take a long time until this is worked out... if ever". I am dealing with a *significant* increase in pain here. And it's not as if I wasn't dealing with pain beforehand. With this, too, let us not forget that my knee is still acting up and hurts me constantly, and I have yet to clarify issues with that. Everything takes time, phone calls, waiting for calls back, paperwork, and waiting for appointments that are hard to get.

This is my life.
I lost out on being on the same planet as the working people at age 39. The doctor who I sued for malpractice, however, gets to keep his profession happily, and even throw me a big smile as we pass in the hallway of the hospital as he leads a band of residents he is teaching, Lord save them. "Hi Sarah" pleasantly surprised to see me. I did not respond. I could have said a thing or two to those residents at that moment. He's very lucky I'm not that person.

The community orchestra I had started to volunteer with last spring starts up again this week. I would love nothing more than to be there... but not this week. I can barely lift myself I am so weak, no less my french horn. My degrees and accolades hang on the wall making me long for those days. I am a ghost of that Sarah.

I may need some pain medicine, I don't know how I'm going to get through this if I have to be more active. I want to be more active, I can't let myself lose it. You know the expression "use it or lose it"...that's what I mean. Pain- it makes one "lose it". But you lose other stuff when you take pain medicine. We need to figure out what is wrong. My mind is going to the dark things- I try to stop myself from going there, it's a waste of energy. Unexplained pain is often a path to the dark things... I've seen so much cancer in my life. Many of us have, I know. I just have to keep it together and try to get in to see a gastroenterologist and get tests done. It all takes so much time. Weeks, months.

And I've put in a call to my orthopedic oncologist about my knee, hopefully we will get to the bottom of my knee problem. It may be PVNS (like a cancer, but not deadly, only deadly for the joint itself). I had that in the same leg, in the thigh joint. I hope it's not because that's pretty bad news.

And the infection on my skin graft is about to win the Guinness's Book of World records prize for the longest lived infection that won't go away and doesn't spread, just hangs out there. I went to the plastic surgeon the other day (yes, with the belly pain, in my condition, with Robert driving, dropping me off at the door, parking the car, etc). The surgeon hem'd and haw'd looking things over, pulled at it a bit (owww), and decided that it does need a scar revision procedure. He wants to cut away the whole pocket of infection, about 3-4 cm's, and stitch it straight. It would be local anesthesia, no new grafting, so it sounds OK. About a month recovery. Thankfully we have no date for that yet, and I am in NO rush to do that, as long as the infection isn't budging, it's on a back burner.

I have an ultrasound for my kidneys and urinary tract tomorrow. Nah, that won't be painful in my situation, not at all. :( Who knows, maybe it'll lead so some discovery of what may be going on here. There was some enlargement of the bile duct seen in the CT the other day, and I think I have (or used to have) gall stones, and that would be seen on the ultrasound tomorrow as well, so I don't know if any of that means anything as far as this pain is concerned, but it might.

The "chagim" or "high holy days" are coming up here next week- Rosh Hashana, followed by Yom Kippur and Succot. Very busy times, very important times. Times that I want to be in the synagogue to pray, and to be with my community. I haven't been able to go since I've been back in Israel, I've been too sick. Also with my knee the way it is I don't think I could walk that far. Although I keep thinking about that amazing hike I did in the Poconos in Pennsylvania! I hiked for about 5 hours, did 1,264 steps up and down (the people who keep Bushkill Falls counted, I didnt!), and that was just a month ago. Yeah, my knee was as swollen as a loaf of bread for a week thereafter, but I did it! And I have the tee-shirt to prove it. :) But with this belly problem, no way. I'm having a very hard time getting around. We'll rent a wheel chair for the holidays. That comes with it's own issues for me, but if it means the difference between being cooped up at home or being out, I do need to get out if I can. The question is if I am in too much pain to even get out for that long, even in the wheel chair.

One day at a time.
That's all I can do.
Let's pray for answers and solutions. I just have a sneaking feeling it's going to take a long time. And I am not happy with that feeling. This pain... it's just not OK. But I don't have much choice.

What's the Deal, G-d????

OK, I am writing from the height of frustration at this point, so please excuse me for not using niceties. I'm really, really upset.

Remember I wrote about it being challenging to play horn because of pains and tingling from my neck down my arm? And that I am thinking it's what Dr. John Sarno calls "TMS"? Well, it is getting so bad that I may have to stop playing horn. I can't play for more than one minute without tremendous pain, tingling and numbness. Also, during all day and night, no matter what now, my first two finger tips are numb completely.

Yes, this is serious. I have been trying to downplay it. Because I need to. I can't DEAL with another &^%$# problem!!!!!!!!!!!!!

A friend of mine just asked me to play at her art gallery opening, and I accepted. I will probably call her tomorrow and tell her it's off. And I'm probably going to skip the orchestra rehearsals for a while, I can barely play, and the time in the car is too difficult.

This is SO UNFAIR. Haven't I put in enough time being injured? How did this happen?

I have a neck CT scan... it was done a few weeks ago, to analyze my throat actually, for the "click" swallow problem. There are bone spurs, herniated disks, osteoarthritis in my whole spine, and one strange thing- the only thing written in English on the paper- a "bleb"- some sort of watery pustule or something. WHATEVER. The CT says my left side is worse than my right. I didn't need a test to tell anyone that.

Tomorrow I am going to see a natural practitioner who works with pressure points, massage, and Feldenkreis method. Thursday I have a "medical massage" lined up with a new person as well. I hope these things help. I also have to get appointments for physical therapy which got approved from the insurance. I will overcome this, but as of now, I can barely practice horn at all.

Also my medicines are all screwed up. The psychiatrist of two weeks ago started me on something that is helping me sleep, but making me feel not-so-great during the day. I am also very shaky. I think the shaking is from my migraine medicine (Depilept). I went down half the dose, and I might have to go off of it completely. (I've been on it before and had the same effect with the accumulation in my body) I cannot deal with the shaking. But will the  %$##@  migraines return?!?!!?!?

All my medical problems since NF have been from the belly down (except the migraines)... now I'm being attacked in my upper body. I don't know why, but also my voice has no range, even just in speaking. My inflections are gone, and I feel shaky in my voice... what the heck is going on?!?!?!? I can't even sing to Azriel at night anymore; I mean, I do, but air comes out for much of the song. He sings to me sometimes.

Are you crying with me? I need to cry because this all SUCKS.
I just want to play horn again. And LIVE. What is the deal, G-D?!?!!?!?!??!?

Ten Year re-birth-aversary

Ten Years.

This weekend marks my ten year anniversary of waking up from the coma when I had NF. It was on the Jewish Holiday of Lag B'Omer.

I find that amazing. I've gone through ***so*** much in those years, it's mind boggling. My book is well in process. It's just an incredible milestone in my mind, ten years, you know?

it's always good to celebrate with a chocolate cake!
and the candles remind me of the bonfires on Lag B'Omer

I am in a good place to write about how it feels to be ten years out of that horrendous disease. I'm also quite active on the NF group Facebook page (I'm a moderator now), and find it amazingly fulfilling to be with others in their stories as well. For many years I've been kind of alone in my NF aftermath struggles, without knowing many people who had experienced NF. Having the connections with the people on the Facebook page is really strengthening for me. We have so much in common, I am not isolated in the after-effects I've suffered (and to a certain extent still suffer). Other people's scars and grafts look like mine (and I am totally comfortable posting pictures to the group of my scars, which I could never think of doing before), emotional and psychological effects similar, even down to sleep disorders. It's almost as if we could write a textbook. I feel quite fulfilled when I can help people who are struggling with this. It's a bit like how I felt doing doula work as well, in that I have acquired skills and experience to give to people which makes their suffering less. That seems to be one of my callings, for sure.

I still have that abscess from the last blog post, but at the moment it's not "active". The antibiotics took down the fever and swelling for that flare-up, but I will be doing something about it at some point. I have a consult with one doctor tomorrow about it, and another consult in June if it can wait that long. As long as it's not active, it doesn't bother my life. But I feel it there, and the area is never without some level of pain.

I am playing horn as frequently as I can these days, but not as much as I used to be able to. I just don't have that ability anymore. I can't play that much. My body just does not let it happen. I am often exhausted (more on that later), and recently have developed a tremendous pain in my shoulder/neck on the side which holds up the horn while playing (left), with tingling down to my fingers. I'll get some massages, but mainly I believe it comes to tell me that playing horn is causing me tension. Tension in muscles causes less oxygen to be carried through the blood to the muscles, and they can seize up that way. It is a theory called "TMS" (Tension Myositis syndrome), a theory presented by Dr. John Sarno in his book "Mind Over Back Pain", which I read in 1990 when I was flat out with a bad back. It makes a lot of sense that I'd get TMS when I start to play horn again... lots of history there, and my own inner competition and perfectionism. It's *hard* for me to play now at the level I am at; making lots of mistakes during orchestra rehearsals. Of course, the orchestra is volunteer and amateur, so I'm not the only one making mistakes by far, but for me to hear myself this way is hard. It's all part of accepting the post- NF Sarah. But in the meantime, I am having lots of problems with my arm and shoulder, unfortunately. I hope it'll calm down soon.

I finally saw a psychiatrist last week. I've been waiting months. She was recommended to me by my neurologist, they work together.  Since it is in the HMO, at Soroka, so seeing her is free, which is good. I feel that I have already started to get out of the depression from after Sabrina passed away, but my sleeping has been awful, and I do still need different types of medicinal support. I basically haven't slept properly in many months... years? The sleeping pill I have been taking for almost ten years lost it's effectiveness, and, well, I really haven't slept deeply in... who knows. Many months, for sure, possibly years, I think.

So I tried to tell my abbreviated life story to this psychiatrist, and it got all jumbled. But she was good, and I think with her clarifying questions and seeing some of my history, she was able to prescribe a new medicine. She told me at first to take half for two weeks, then a whole one.
Well, that first half put me out for 24 hours. No joke. I did get up to eat a bit and show my face over Shabbat, but I slept most of Shabbat. I did go out for about two hours in the afternoon, but was still fuzzy and tired the whole time. Robert thinks that my body (and brain) was just so happy to sleep deeply, that it drank in more and more. I think I have been extremely sleep deprived. I know I have been. We all know I'd rather fix the problem without pills, and that goal is not out of reach, but not for now.

So the next night, after so much sleeping, I was in a quandary as to whether to take another half or not. I can't keep just sleeping, obviously. So, I cut the half pills into quarters. Even that put me to sleep and made me feel a bit woozy half the next day. I am still taking the quarter pill at nights, and I am sleeping well, thank Gd, but not feeling so great during the day. I'll give my body a bit of time to get used to it. Then, of course, I have to wean off the old pill. That'll be fun. For now they are both in my system nightly.

(This part was written on Thursday)

I saw the specialist today about the abscess. He said that with the next flare-up, I should go straight to the hospital (not bother with the doctor first) and get it drained. That is not just one little simple procedure, mind you... it is two procedures, a month apart.... the abscess needs a tiny catheter to remain in the gland to drain for a month before closure. Today it was too small for him to do anything about it. So, treatment plan in place... but not one I am so fond of. Maybe Hashem will create a miracle and make it never flare-up again. :)

Soon I'm leaving for the orchestra rehearsal, and I'm not feeling so great, and my fingers are tingling from my shoulder pain (I'm now thinking it's a pinched nerve). And I have a nasty headache.

Tomorrow morning at 7:30am I'll be doing an MRI for my hips. How's that for terrible scheduling!

I may just sleep through another Shabbat. Hard to predict.

Time was that playing an entire Beethoven symphony was just the beginning of my day, or the end of a long day, and it wasn't a big deal. *Now*, when I play with the orchestra, Beethoven 6th symphony (one of my all-time favorites) it takes EVERYTHING out of me, I can barely make it through. And then I sleep all the next day. I can barely do this orchestra thing, but I am going to keep trying until I have a good enough reason to stop.

Ten Years ago my life changed on a dime. To this day, I feel that I not only left "a pound of flesh" in that hospital, but a piece of my soul. Thankfully Hashem doesn't skimp on souls, and allows for regeneration. Shabbat Shalom! Lag Sameach!

Karma

So much good is happening. On the one hand I am starting to trust it, but on the other hand, just as that is happening, I get knocked down again with another infection. Why does that happen every time I start playing horn again?

A few months back I met a trombone player at a friend's daughter's batMitzvah Shabbat. Turns out his position on playing and stopping playing was very similar to mine. We had a lot in common. He works in Be'er Sheva every day, so we vaguely conspired to prepare a recital together, within a year or so. The idea sounded great to both of us, and in principle I am still looking forward to doing it.

So now I've been practicing almost every day, sounding better and better, finding my embouchure again, and the wobble-chin of no muscle support is slowly going away. I've been playing in the community orchestra I wrote about, and really loving that. I've been so happy about that.

Then it struck... yesterday I wound up in the hospital again. Remarkably it was on the day that is the anniversary of my hernia surgery which lead to NF. April 26th, 2007... ten years. What karma.

Two blogs back (here) I wrote about a few times that I nearly wound up in the hospital. Once was a cellulitis-like adventure that I underplayed and decided to stay home, and said it was better the next day. Well, that particular pain/fevery feeling is not new to me, it's happened a lot over the years. I just chalk it up to lymphedema and my general situation. Last time it happened, though, I did notice a definite red circle within all the swollen part. So, when it happened again yesterday, accompanied again with fever, I went to the doctor. She sent me to the ER. They gave it a name- it is an abscess of a certain gland. Who knew? I've had it for years, and I never specifically checked it out because it is usually better the next day. But now it seems that because it's visible, it's a bigger abscess. Not great. They said they could intervene surgically and remove it, or I could try to combat it with antibiotics. Yeah, that's a no-brainer for me. Lay those antibiotics on me. Yes, I have a lot of allergies, but I'll need antibiotics anyway, so, you're the doctor, find something. The idea of cutting (just that word makes me feel like the face of the guy in Edvard Munch's painting of "The Scream") into an abscess in an area (involved in the NF) where there is a compromised lymph system... REALLY? "I may be dumb, but I'm not stupid" (from one of my favorite movies "Forest Gump").

If the antibiotics don't work and this thing doesn't clear up, well, we'll cross that bridge when we get to it. Good news is that I am not allergic to them. That first dose is always a bit nerve-wracking, but thankfully it was uneventful. They make me really, really tired (because I wasn't really that tired before), and so far no change in the abscess, but I can wait. We have 7 days to make this baby reabsorb.

When I met that trombone player, I said to him that every time I pick up my horn to start playing again, I get sick or someone dies, and it makes me stop being able to play. Seriously. You know, in that matter-of-fact way I say things, those of you who know me, I said that. So he says "maybe you should try to boil your mouthpiece to sterilize it before you play, maybe you are getting germs from that". I thought to myself "awwww, isn't that cute... he thinks I'm talking about little germs and a cold. Maybe a little cold sore on my lip. Such sweet, innocent thinking". Then I told him a tiny, 20-second version of what germs I was dealing with and what I meant by getting sick... and what I meant by who died recently in my life. There may have been some longer-than-usual pauses in our small talk.

On the topic of getting back to my old self in a new way, recently I have also received *three* calls for doula work, and did one support visit for a post-partum woman after a c-section. Isn't that so interesting? I didn't accept the doula work, I gave them phone numbers of other doulas. But the post-partum visit I made was very rewarding. I think I helped her a lot, having been through a c-section myself.

That's also karma, if you ask me. I said above that on the ten year anniversary of my hernia surgery I was in the hospital with another infection and that was karma... well it seems to go both ways.

Life is black AND white. I'm rolling with it.

Orchestra rehearsal is in 15 minutes at the moment.... I'm sad to be missing it! 

But I'll be back. Please God.

Isn't this the *coolest*!? I wish it was mine... just a photo from the net.