Friday, June 2, 2017

I WILL HEAL. Something has got to work.

So much is going on... lots of changes. I am working hard to heal myself, and all the time not feeling well at all. I don't know what is wrong, but I have been feeling really lousy/achey/fevery lately (but no fever).

I started writing this blog post many days ago, I lost track of when. I'm going to just take pieces of it, then continue on with more present things going on.

(this is from late last week:)
I felt so traumatized after that shot last Monday. Totally defeated and beaten up.
On Tuesday my abscess acted up. It acts up whenever new pathogens are introduced to my body and my lymph system has to fight. This time it was from the shot for the MRA. It was swollen, red, and I had a fever. That lasted for two days, and by Thursday I was a bit better. But, Thursday was my last day of taking my migraine medicine, so I had withdrawal to go through, so no rest for the weary.

I chose not to go to the hospital to have the abscess taken care of surgically (I was told to do that). I have many years of experience, and I'd know if I was in any real danger from infection. I was too traumatized to enter a hospital knowing something on me was going to get a surgical procedure. Also, I am not convinced that I need that procedure. The cyst/abscess doesn't look like the pictures of the same thing I've seen on the internet. Anyway, I literally was too traumatized to go. I have decided I am going to try to take care of this (and other) problems with homeopathy. I've never really given it a true try, and it is time. I will do almost anything to avoid having this abscess drained surgically. It's an awful two procedures, and will open me up to infection over the course of weeks. Not good. So, tomorrow morning I am going to a wonderful homeopath. She is also the same woman who did my lymphatic draining the first two years after I had NF. My sister-in-law is a homeopath (but they have a policy not to treat family), and they know each other. I know I'm in good hands. :)

I had the initial interview with the homeopath team (two partners work together), and it was really really intense. It lasted three hours, and then I had to answer a questionnaire in an email afterward. Homeopathy is about much more than healing an illness based on symptoms. It's about your whole life and history that got you to this point in your health. It's true integrative health.

(Skipping back to the older writing:)
So guess what? I am off my migraine medicine, which is good and bad. Good because my hands will soon stop having tremors, but bad because I am not covered for migraines. (and I've had a few whoppers since then...)
But what does feel cool is that now, I think I am on the least amount of prescription medicines in the whole 10 years since NF. I am on only two prescription medicines. I find that amazing. I'd like to get off the sleeping pills, and it will happen at the right time. Then only one would be left. Amazing.

There is a lot going on... it's hard for me to keep track of everything. But today I had an important meeting with a speech pathologist regarding my throat click. The ear, nose, throat doctor I am seeing about that is in Rechovot- Kaplan hospital, so I went there again today.

So, the ENT had ordered some tests so he can try to work out a treatment plan, if any, for the problem. It's not just that I have a click in my throat every time I swallow, but I am also losing my voice. It is getting worse and worse. I can no longer sing out of my speaking range... nothing comes out. I used to be quite a good singer... sang in choirs and everything. This losing my singing range started after my last surgery, last October, on my hip. I'll remind those who may not know or remember, but something happened either with the tube in my throat, or with the position I was in during surgery, that screwed up my throat. Hasn't been the same since.

I had a CT scan of my throat, and the results of that could also explain the numbness I have in my arm and fingers and why I have had to [temporarily] stop playing horn. There are bone spurrs, and many protruding disks in my cervical spine (neck). Basically from C1-C7 is completely messed up.

The ENT also confirmed I have vocal polyps (which I've had for 25 years, but there are more now), and need to never raise my voice, talk less in general, and less on the phone. Lot's more texting for this girl! Our house is so big, though, it's going to be hard to break the habit of raising my voice to call the kids around when I want to. I've already texted two of my children within the same house. This oughta be interesting! But all jokes aside, this has been scary for me, slowly losing my voice.

Then he said this:
"have you been to a neurologist about the numb fingers?"
"why not"?
"because I can't bear to open another can of worms. I'm too traumatized."
"has an orthopedist seen this CT?"
"Because orthopedists suggest surgery and I can't bear it anymore".

"OK, listen Mrs Klein my dear, I need a report from a neurologist and an orthopedist who have seen this CT. I understand you are scared, but just because someone suggests surgery doesn't mean you have to do it. I very well may have other therapies that will work for you, but I first need to make order out of all the issues going on in your neck and voice. It could be that the "click" is from the skeletal issues in your neck, it may not be. I need more information. And I want you to be able to play your horn again. That's my goal."

Funny, I told him, because my neurologist said that to me also years ago at our first meeting when he was helping me go off the Fentanyl. He said his goal was to help me to play music again. So, my ENT said we're on the same page.

Thing is, the Homeopath advised not to go to the neurologist. She said "for what"? He has to make a diagnosis and treatment plan, and it'll be medicines or surgery, and you don't need another diagnosis hanging over your head". I understand that, so at this point I'm waiting.

Yesterday I saw an Osteopath for the first time. Osteopaths also do integrative medicine, many also work with Homeopathy, and Chinese herbs, but they concentrate on aligning the body to function at it's best. I need need need to stop the numbness and tingling in my fingers coming from the left side of my neck. It's not a good thing. I cannot play horn with that happening, it exacerbates the problem. So I had to leave the orchestra I was volunteering with. Makes me sad, but I also feel intuitively that it is temporary. Please Gd.

I got an osteopathic adjustment yesterday. It was really intense, and somewhat painful (OK, very painful in some spots), but I feel this guy knows what he's doing. He came highly recommended. He looked at the CT of my neck and said "wow, what a mess (but in a tone and manner that was not judgmental at all). I'd like an MRI". I'm going back to him next week to do another adjustment- neck, back, hips. He also said that when the body is in alignment, the immune system works better as well. I have optimistic hopes with these therapies I am trying! (and I have to ask my orthopedist for a referral for an MRI on my neck...)

I have recently found myself digging deeper into "why is it every time I try to get back into life, there is a road block with my health getting in the way?" I have asked many people on my NF support group, and nobody else (so far) seems to have the problems I've had since NF. There are people who do have problems, but not like mine. Some got NF because of diabetes, or other problems, but not many people I have come across have ongoing health issues for many years. I am so ready to MOVE on and live life to the fullest... I just can't understand why my body isn't letting me.

But I did do a birth! :) On Monday my friend's daughter went into labor, and she called me for some advice. I gave advice over the phone, and said also that I was free for the evening if she wanted me to come over for a bit to asses things. Her daughter said *yes* that she wants me to come over. So, off I went! I got to their house, and there was the lovely lady in the shower. I half got in with her, and helped her with her contractions. We stayed home for a few hours, then it seemed clear to me that she was almost ready to give birth, so off we went to the hospital. We got there, and she was already 10 centimeters dilated! Yay! Perfect. She had the baby in 15 minutes afterward. And *that's* the way to do it, uh-huh. :)

Did I pay for it afterward?
Uh huh. :(
I had a fever the next night (Shavuot), and a migraine the following morning. But when the migraine ended I did get to go to her house and visit with them. That was awesome. Mommy and baby are doing great, baruch Hashem. But with me, those things (fever, migraine) might have happened anyway, so at least I got to be at a birth!

So, Sunday I go back to Kaplan hospital for the vocal therapy, then Wednesday to Jerusalem for osteopathy. And at some point next week I'll hear from the homeopaths and they will give me a remedy that they think will help me.

I just wish I understood more about what is going on inside my body.

Tuesday, May 23, 2017

medical abuse

I should have taken more of a hint when the guy before me came out after getting his hip injection yesterday, and he passed out.

My turn for the injection came up, and the nurse kindly told me "don't be frightened by what you saw when he fainted, he's a boy, you know how guys can be" [I am NOT making this up]

The injection was for the purpose of getting contrast dye into my right hip joint to do a special kind of MRI called actually MRA (arterial). The big long needle goes right into the hip joint so the contrast fluid goes into the artery.

I've had this test before; I had it two years ago, before I underwent surgery to repair the hip. I had it done privately at that point because there is such a long wait for this specific test with the national health fund (cupat cholim). I thought I knew completely what to expect. First the small injections to numb the joint (local anesthesia like what you get at the dentist), then the big 'ol needle shot into the joint, while directed under a CT machine so the doctor gets it in straight. Like I said, I did it before.

This time I did it through cupat cholim because my private insurance wouldn't pay for it. I had to wait three months, but I wasn't in a hurry.

Guess what? NO LOCAL ANESTHESIA FOR YOU at cupat cholim! It was *insane*. It went something like this: The doctor (or nurse?) prepped the injection site, and I couldn't see the area. Then she said "you'll feel a little needle now"... of course, I was thinking to myself that I am getting the anesthesia now. But *no*... SURPRISE! Huge needle goes straight into my thigh joint and doesn't stop... deep into the joint, I felt every millimeter of it. I screamed. I yelped again when the doctor had to move it to get it into place. She raised her voice at me telling me not to move. Then again when they injected the fluid through it I couldn't control my expressions of PAIN being inflicted. I felt every little movement. It was horrific. I started yelling at the doctor- "why aren't you using local anesthesia? Last time I had this it was with local anesthesia! She asked where did I have it done, and I told her- the private hospital in Be'er Sheva (Assuta Be'er Sheva). She said "oh, well that's private, what do you think? It's not done here." That's all, just "it's not done here".

I didn't faint, but I was in a helluva lot of pain. The MRI afterward went fine, but my thigh joint Hurt. So. Much. It was hard to stay still like you have to do for an MRI.

Today, one day later, I am still in pain. I don't know if there is anything else different than the first time, because I think it didn't hurt so much after the anesthesia wore off the first time. I think the doctor hit a nerve or something.

Because that is what is missing in my life, more nerve pain.

I am also feeling kind of fevery today, praying that this whole thing hasn't triggered my abscess to come alive again. Or that the needle didn't deliver some sort of pathogen or bacteria. Gd forbid.

What would it take... five extra minutes to deliver local anesthesia? Ten?
I am very upset that I feel abused and battered again from doctors.

(a special thank-you to TI who drove me there and back, and supported me throughout! xo)

Tuesday, May 16, 2017

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?!?!!?!?!??!?

Friday, May 12, 2017

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!

Thursday, April 27, 2017


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.