Thursday, April 27, 2017

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.

Friday, April 21, 2017

Life, death, and no-man's land

Often it feels like I'm gliding through no man's land. Well, not gliding, plodding is more like it. That's why I haven't written in so long. It's hard to do anything in no man's land. It's even hard to explain. There have been some wonderful times over the holidays, and with the kids... nothing is *that* wrong. Except that I don't feel well, hardly ever. Most recently I've been overcome with a tremendous fatigue, heavier than any I've ever known. Still I plod away, though. Well, not always. After the seder for Passover, the day following, I could not get out of bed. I did not make it to our family holiday lunch downstairs. Or the day after that. The kids were all off from school, and my brother Peter came to visit. I pushed when I could, rested when I had to. It's the kind of fatigue that my head was spinning and I couldn't string sentences together... couldn't get my body to agree to be vertical.

Intuitively, I feel something is Really Wrong inside me. Honestly, between you & me (and the internet) I have an almost constant foreboding feeling that I'm going to die an early death (what is an early death, anyway? We aren't the ones who decide times, God is). I never felt this before I had NF, (honestly I felt invincible before I had NF) but my psyche has not been able to return to not feeling this way. I wonder if it's because my sense of mortality was shaken to the core when I got so close to that line between life and death? I've been talking about it a bit with my psychologist... this is a feeling that has intensified in a big way since my friend Sabrina's passing in December. I don't know what's real and what is psychological with my body's symptoms. In the meantime, I am going through with a lot of tests to see if there is some see-able imbalance we can right. Blood tests, x-rays, CT scans, MRA, MRI all in the near future. I've had chest pains for months, but nothing frightening. Could be anxiety. I try to do guided imagery at bed time- a difficult time for me because despite the exhaustion and sleeping pills, I have a very hard time falling asleep, and staying asleep.

Recent doc visits:

Neurologist visit= migraines in check, but my hands are shaking a lot from the medicine, so we lowered the medicine. That was three weeks ago and I am still shaking. As scary as lowering it may be, side effects are not long-term livable. I'm going to lower it more soon on my own volition.

Dermatologist= gave me two different creams for apparently two different types of rashes on my grafts and thereabouts, and neither of the creams are working well. Seems like the grafts are never happy.

Enough of that.

My big news is that I am playing horn again, fairly consistently. Can you believe it? Do you know that almost ten years have passed since I had NF and stopped playing?
There is a new "start-up" orchestra about a 50-minute drive from me, and a horn-player friend told me about it and suggested maybe it'd be a good place for me to play, not for money, without pressure. She's coming, too, so the two of us are the horn section. The first week we played Shubert's "Unfinished" symphony, and last night we played Beethoven's 6th symphony ("Pastorale"), one of my favorites. I really enjoyed it, even though the level of the orchestra is very amateur. It's what I need for now... I am also amateur at this point! I don't know if it will lead to me being able to get my own playing level up and doing more playing with better orchestras, but for not I don't have to worry about that. I try to practice every day, or as much as I can, when I have energy. That is a step forward... it's movement... it's development. It's *life*.

So there you are, the philosophy of life and death, by Sarah Kashin Klein.
Thanks for being with me, we hope you have a good flight.
Shabbat Shalom!

Dov (18), Shifra (14) and Wazi (11, presently with a broken foot)
at a picnic we had in Modi'in together with our other Klein family here in Israel
(Robert's brother, SIL and one of their kids)
over Passover. It was lovely!

Friday, March 31, 2017

Had a bad week, but "I'm still standin'..."

(the title- the part in quotations- is from an Elton John song which I love)

In the past week, there have been a few times it was borderline if I should go to the hospital or not. Isn't that crazy? 

One time, last Wed I think it was, I had an over-swelling of lymphedema and could barely walk, and it gave me a fever and I thought I had cellulitis again. What I have also had before is Erysipelas, which is similar to cellulitis. Robert wanted me to get checked out at the hospital, I wanted to wait it out. I know the danger signs beyond what I already had that would make me go in. Sometimes I've seen my body fight this and win, and I want to avoid antibiotics whenever possible because I have so many antibiotic allergies. I stayed home and eventually, after about three days, my body fought and won. But then this weird rash, which has existed for months on my skin grafts, broke out in many other places. Again Robert thought I should get a check at the hospital, because it was accompanied by really awful weakness and this coughing I've also had for months. I was completely weak, it was a bit scary. Too many things at once. But I stayed home. I had an appointment set with my GP today, so I wanted to make it till today and stay out of the hospital. It's a very bad place for me these days, so many bad memories; some memories distant but ever palpable, some still too close.
Also, when one feels so awful, sitting around for hours on hard chairs waiting to have doctors see you is not my idea of giving my body a rest.

After a horrendous 9 hour migraine which I couldn't take anything for kept me down for yet another day, I was DONE. Robert thought it was brave of me to weather out the migraine instead of going to the hospital to get the IV cocktail that helps. I call it self preservation. I did take a few too many sleeping pills, though, to put myself out from the migraine. Don't worry, not *that* too many.

But along those lines, the "things have been very dark and scary emotionally" lines... yeah. Things have been very dark and scary. I think about death a lot. I am getting help, though, but it's not enough. I am seeing my psychologist from years back, and she's good, but I need a psychiatrist. I went to see my loved healer, Miriam Maslin, about an hour trip from me a few days ago also, trying to reach out for more emotional help. While I do feel the session helped me, she also feels very clearly that I need a psychiatrist to manage my medicines. Things are off, *I'm* off. I tell her things (for probably 15 years now) that I don't tell anyone else. This time she felt she was out of her waters... first time ever.
I'm upset that the psych hospital that I showed up in the ER a few months ago never followed-up. They said I'd have a psychiatrist within a few weeks. That was more than two months ago.

I need to follow-up on that myself, I know, but it goes into the category of Too Much when....

I have literally TEN different physiological (not psychological) tests to do in the next few months-- throat tests, scans- two different kinds for my two different leg problems, CT's, MRI's, blood tests, yadda yadda, and I can barely get those organized. I said to my friend today, what if I just don't do them? Well, OK, I may never get my singing voice back, the click may never get fixed. OK, let's say that. But the legs stuff, the PVNS follow-ups, the blood tests? I may not be walking by 70 (or earlier, Gd forbid if the PVNS comes back) if I don't do these follow-ups, and the pain will just get worse. And I may just keep feeling crappy if we don't have any blood tests to have insight into what may be going on. Next week it's an anonymous dermatologist for this crazy rash... and probably a swab of it to see if it is fungal or infectious. Then oh happy day to a women's doctor because of lymph drainage problems and the erysipelas (look up the link I gave you in the first paragraph).

And Passover is coming and I have a huge house. That goes with a thank G-d as well, but it's stressful.

I want the life back where I wasn't a patient. Being a patient is a full-time job, but without the joy.
(except when my friend Ken sent over Ben and Jerry's peanut-butter cup ice cream because I was feeling so crappy and he wanted to cheer me up! That was indeed joyful. :)
Oh, and the fact that I can watch Mary Poppins with my kids because I am home a lot, and I can spontaneously take them out to the new "Beauty and the Beast" one afternoon.... yes, there is good in having lost my ability to hold a job. That sounds weird, but you know what I mean.

I *may* go play in a very amateur orchestra next Thursday if I'm up to it... I've been practicing a teeny bit. One day at a time.

The one time this week I felt well,
I got dressed up to go to a dear friend's wedding (just the ceremony).
Still feeling pretty well now, the same night...
let's pray Shabbat will be good!
We have some special guests coming (Dev!! Shana!)

Tuesday, March 21, 2017

Inventory: Emotional and medical

I am reading a very wonderful, very powerful book at the moment called "My grandfather's blessings" by Rachel Naomi Remen. She is a wonderful writer, also famous for her "Kitchen table Wisdom" book. She is a psychiatrist who has been through many career changes, currently working in hospice, in California. I am receiving so many blessings from this book, it's helping me with my mourning. Rachel Remen says that if it was up to her, grief would be taught in kindergarten right up there with sharing toys.

I wish I had her as my shrink!

We have no guidance in our regular lives to navigate grief. It comes upon us by surprise, and we are as if left in a deep, dark, cold forest with no tools how to get back home. That's where I've been the past two months. In deep, dark grief. And it is up there with the hardest things I've ever had to do in my life. For the past few days, though, I have been feeling the fog lifting at times. I have had some times of feeling... a little better. A far cry from "well", but I can see times that the grief can lift, temporarily. If I only talk about it with a friend, though, the tears are as close to the surface as they have been over these few months.

I thought grieving for losing my health, careers, personal body image because of the tremendous wound damage from NF, losing lots of control over what happens in the house because I am sick so much, was a lot to grieve in the past nine years. While that's all true, since my mother passed away in June, and Sabrina in December, and especially because of all the details involved in Sabrina's passing, it knocked me down HARD. One of those "details" is the loss of not adopting Sabrina's daughter, Tessa. I'm talking about monumental details of that level. It's all SO. MUCH. I have been overloaded with sadness. I am still there, and I hope and pray the right kind of support will come soon.

Medically:

I need a secretary. It is so hard for me to follow-up on all the paperwork and appointment making and calling. If I want my throat problem fixed, I have to do two tests; one is a swallow test where you swallow liquids (Barium) from thin to thick, and the swallowing is recorded by a special type of x-ray. I also need a neck CT scan. Haven't scheduled either of those yet. Oh, and also voice coaching from the hospital speech pathologist because the upper part of my voice is shot since this whole throat fiasco started.

Then yesterday I was in Tel Aviv at the orthopedist. He looked at my last scan, but it isn't the type he needs, so I have to schedule an MRA for my right leg. Looking at the scan I had he commented that my left hip looks terrible, filled with fluid. He asked me what the oncologist says about that, I told him they said it was fine. No other comments. Didn't boost my security, though, that we are only looking at the possibility of one hip replacement... could be TWO. But I can't go there. I can't deal with that information any time soon. All I can do is try to make phone calls in morning times to make appointments and send faxes. These days, that's a lot for me.

But I did play horn the other day. Felt awful, sounded even worse I'm sure, but I did it. May do a shared recital with a friend in a year's time for my 50th birthday... we'll see...
And I bought myself a new (2nd hand) bike, and went riding with Dovie.

It's not all gloom and doom. But it certainly ain't paradise. I'd even settle for normal.

Sunday, March 12, 2017

Medical update

"And all this because of one small elective surgery..."

"Yup", I say.

Met a new doc today. I've been waiting months to see this one, his clinic is constantly backed up. So, since my condition isn't painful or detrimental, in this case, I took whatever appointment they had and waited.

I drove about an hour to see him. He's the ear, nose, and throat doctor that all the other ENT's I've seen about my throat click problem told me I should see. I first wrote about this problem Here.

The ways those guys have to examine things is really so unpleasant.... numb the throat with a spray, put a tube through the nose down the throat to see vocal cords. Then another scope thing to see the esophagus. I coughed, I tried to do what he needed to see stuff for the test. The exam lasted almost an hour.

By the end, he said he's not sure if he can help me. He's also not sure he can't, He's sending me for more tests and also for vocal rehabilitation (I've lost the upper range of my voice since my last surgery a year and a half ago). So, after I get a CT scan of my neck, and a swallow test (which sounds dreadful), I'll go back to him with the results, and he'll see if he can fix whatever "it" is. I've also had a chronic cough for over a year.

So far the biggest thing that came out of it is this: I should avoid any more intubations. (as if it's something I schedule in my day planner on a regular basis!)...
He said that if he can get this dislocation thing fixed, it'd be too fragile to intubate again. If he can't fix it, another intubation could cause more damage. I told him I'm going to need a hip replacement soon. He said to do it under epidural anesthesia. I confided in him after a little bit of thinking it over, that I have been quite traumatized by surgeries, and I didn't think I could do one awake, even if I wasn't feeling anything at all. He suggested other methods of "twilight sleep" + an epidural. He wrote it all down on the notes he was writing for me to take to my GP. He said anytime I may need another surgery, show the anesthesiologist and surgeon this letter.

The med student who was observing with the doctor today really got some interesting things to go learn about. He hadn't yet learned about Necrotizing Fasciitis or strep A....

Another strange thing from Sarah's life of medical anomalies.

(OMG! I was just doing a bit of research to find a picture to publish here, and I stumble on a fact: It is extremely rare, but one can get PVNS tumors in the throat. Anywhere there is synovial ducts and fluid, actually. Know that PVNS is a rare disease, no matter where it is, but I thought it was only in shoulders, knees, or hips. The doc did say he saw nodules today, and tumors from PVNS in the neck must be very small... in a few articles I read they called them nodules. WHAT???????)

OK, I am not going to put up pictures for you of anatomy of the throat and the cricothyroid joint that may be dislocated in me. Instead, I will put up pictures of two of my kids dressed for Purim yesterday. It's much easier to handle than thinking that the PVNS may be growing in my throat.

I had a red-haired girl in a black wig being a bad-luck black cat, and a Brooklyn basketball player. :)


those are *my* boots...


thanks for the cool basketball duds, uncle Peter!

We made it through Purim 2017. I layed low because of being in the year of mourning, and that suited me fine.... layed low, 
not including the round trip drive to the doctor and the difficult exam.