More breaking news

I went to the gynecologist today, and it was a very GOOD experience! Thank Gd.

She did an ultrasound, which hurt a lot. This is as opposed to last year when I went to have two checks with two gynecologists and the exams didn't hurt. They both told me last year that if the pain I was having was coming from my uterus or cervix, they couldn't do the exam without it being very painful for me. It wasn't, so they surmised that whatever the pain was, it wasn't from my reproductive parts.

Today's exam hurt- a LOT. Also the doctor saw fluid and infection around my uterus, and an unknown polyp-looking thing inside, which when she ultrasounded that thing it hurt like h*ll.

So now I am on two different antibiotics, because the ideal one for this condition is one I am allergic to. I am on two antibiotics, and pain medicine, which is working. Last year NO pain meds worked against that pain. This one is working, thank the Good Lord.

The antibiotics are already wreaking havok on my stomach, though, as they do. I need to get through seven days of this, heavy antibiotics and stomach problems, but I have big-time hope that this will solve the problem!! I am taking probiotics, too, yes.

I also have to get a special sonogram for the unknown polyp-like thing in my uterus (which is beside the large fibroid I've had for years). The doctor today told us who was the best technician for this specific thing, and how to get an appointment with her. That was great. Then after I get that ultrasound, I'm supposed to go back to today's gynecologist with the results and go from there. We may have to biopsy it.

So, the interesting thing is that today I managed to get an appointment with the Ichilov hospital pain doctor to administer steroid shots on *Sunday* (instead of August!)
But now I don't know if I need them... if this pain totally goes away then I don't need the steroid shots, obviously, but what if the infection is taken care of and I still have pain? Then I would go for the steroid shots. So, by Sunday morning I'll have had six doses of antibiotics, I hope I will know if I"m out of pain or not at that point. I can postpone the shots in any case, we'll see. Complicated.

But I have hope that this is "just" an infection and won't need the steroid shots, no less that big surgery. I still want to get the MRI done, though. I like my cousin Dovid's suggestion, to do random acts of kindness to the MRI control lady until she gets me what I need. Have coffees sent to her, bribe, perhaps? :)

So that's the latest. Thanks for letting me keep you posted. :)

Shabbat Shalom to all.

nuclear fallout from NF

I'll start with a timeline to try to explain what is going on here:

Last spring/summer (2017)- open small wound in my skin graft that stayed open and draining for four months, resistant to all antibiotic creams and oral antibiotics, only closed up when I used Manuka honey on it for two weeks.

Sept 2017- one week after the little skin graft wound closed, severe abdominal pain sets in.
I started doing lots of tests, nothing shows up in my blood work. Colonoscopy showed ulcers and duodenitis, I took medicines for that, no change in the pain level in my abdomen.
A CT scan and a few surgical visits, nobody will touch me, but maybe the problem is with the mesh in my belly, but nobody could say for sure.

That pain stayed with me almost all year, and, as most of you know, life was hell.

July 2018- Mayo clinic- received shots into my abdominal wall with steroids, and after 10 days I started to feel relief from the abdominal pain.

August 2018- rejoiced in life with minimal pain, tried not to worry about the future. Celebrated my youngest son's BarMitzvah. It was a tremendous blessing. I even started using my gym membership.

Literally had no time to research who can/will renew the pain shots after the three months effective prediction from Mayo clinic. There have been many holidays this month, and Azriel's BarMitvah, I haven't found anyone yet to do the pain shots, but I have a few possible leads from phone calls my doctor made on my behalf.

September 2018- Yom Kippur- fasted for 25 hours, standing for almost all prayers for an entire day. Then, after the fast was over and I ate, I admitted that the abdominal pain was returning, but I thought maybe it was just because I had fasted and pushed myself. That evening my friend's daughter called me with an emergency breast-feeding issue, and I stayed helping her until 2am.

Also September 2018- my thigh bone (femur) in my left thigh, where almost all the damage from NF & PVNS has been around, begins to throb and hurt. I notice I have limited range of movement. A few weeks later a new sore starts to try to open on my skin graft... and my thigh pain gets so much more intense that I can no longer sleep on my left side. If I wind up on my left side, I wake up in pain in my femur bone. I didn't let the skin graft sore open, I immediately put Manuka honey on it, and it is still red but not open.

My femur hurts all the time now. Over the course of a month it has intensified.

I think to myself, either this is the PVNS returning (unlikely because my last MRI last June was clear), or an infection. Or, maybe the muscle and nerves surrounding are acting up... my whole left thigh has been numb since the original hernia surgery when the lipoma was excised. 11 years, numb upper left thigh. But strange things happen with muscles & nerves that are damaged... who knows. I decided to report this pain finally to Robert, then to my doctor a few days ago.

I realized that the pain is *in* the bone itself. That's what it feels like. And since I had a soft tissue (skin graft) infection for so long last year, draining, antibiotic resistant, and now one tried to open up again, I think to myself I may have Osteomyelitis... when infection sets into bone (and that infection will seek out a "sinus"- make a sore or wound- occasionally to let drainage happen). But then I thought to myself, "nah, I have no fever, I can still walk OK, it can't be..." Then I Google'd Osteomyelitis without fever. Bingo. All the symptoms line up, and adults hardly ever have fever with osteomyelitis.

Then, [I think coincidentally] yesterday and today I had/have fever. It's probably a "regular" bug and not more symptoms of possible osteomyelitis, but who knows.

I may have had this for possibly years. It can often go undetected, or un-diagnosed.
Treatment for Osteomyelitis? Well, first we have to diagnose it. I need a bone scan, then possibly a bone biopsy. I have So Many antibiotic allergies that it is very complicated if I'll need antibiotics. But the treatment is intensive antibiotics for many weeks- some say 6-8 weeks, often by IV. And I hate to say this, but treatment often includes also surgical removal of infected bone. Pieces thereof, or the whole bone. We're talking femur here... I don't even want to utter the word that that implies.

At this point, I need immediately: an infectious disease doctor, my orthopedist, and a bone scan. In short, I'm in trouble,

Oh, and pain shots in my abdomen.

Those are the facts, from The Front. I cannot add my own commentary more than I have. You don't want to know.

Infection strikes again

(this blog post does not end on the same day it starts... it's been hard to find time to write, I've been very exhausted, and very busy... bear with me here...)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

You have no idea how much I am freaked out today. I don't even know if I can express it in words.

First of all-- DAD: Don't worry, I'm really OK. I promise. I am not writing this because the world is collapsing. I am writing this because this is the only place I "discuss" these hard feelings I have. I'm OK. I repeat, I'm OK!! Say it out loud to yourself "Sarah is FINE". Now, smile.
There. That's better. Now I can write. Love you. :)

OK, so why am I freaked out? Well, here is a picture, then I'll explain it for those of you who don't understand Hebrew...

The page goes on to give more information about what antibiotics
the specific bug is sensitive to. Unfortunately, the first three in the list,
I am allergic to. So we chose the fourth. It's sulfa based, hopefully it'll do the job.

OK, That was yesterday... Sunday. Between yesterday and today I feel like it's been a week. See if you can follow what went down these two days:

Sunday: Woke up, felt OK except for the aggravating and painful infection in my skin graft and my swollen knee of unknown origin. I had walked a lot over Shabbat, and my knee was very sore and swollen. But I had my Osteopath appointment to go to in Jerusalem. I also had to find out the results of the wound culture. I called my health clinic, had to wait an eternity for a nurse to answer. Then I was told that she can't give out results over the phone, but I can retrieve it over the internet with a code. OK, I didn't know that. So jumped on over to the internet and managed to wrangle the results to show up. Boy, was *I* surprised! At first I thought that S. aureus meant Strep A. That's what I had when I had NF. I was sure that was what it meant. All day yesterday I was saying that's what it is. But my doctor said I didn't need an oral antibiotic for it, just try another cream. I tried to reach my doctor to talk to her, because my knee was also swollen, and I felt I had a systemic infection going on and she wasn't taking it seriously enough. But I couldn't talk to her, just send texts to her through the secretary. It was nuts. So then the secretary said that my doctor said just wrap the knee and keep it elevated, and put the new cream on the infection.

Then I left in my car to go to Jerusalem. I was getting more and more anxious as this was settling in, as you can imagine. I have active strep A, and my doctor is being pretty passive, in my opinion. I have tried many creams over the month. I have tried triple antibiotic cream, iodine, neosporin, all of them many times, and I washed the area many times with anti-bacterial soap. All that, and it still cultured positive. Now she wants me to try another cream? Did she forget entire sections of med school? I said a few weeks ago that I think I need an oral antibiotic. She said she didn't want to play around with oral antibiotics with me because of my allergies. But this, this is playing around with my life. Antibiotics have a purpose in the world. I haven't been on any, or needed any in almost two years. It's not so terrible to use one when necessary. I felt she was being cavalier.

Oh, and I forgot to tell you that I did go to the health clinic last week on Friday to try to get an oral antibiotic. Knowing I'm traveling soon, and having this open wound on my skin graft has been very heavy for me. My own doctor isn't in on Fridays, but you can see the one that is on. That doctor wanted a swab of the wound in order to choose which oral antibiotic to give me. *But* you can't do blood tests or any cultures on Fridays in Israel unless you do it at the hospital directly. So, she gave me a referral to the ER to get an urgent swab, with the goal of oral antibiotics. OK, I thought, we're getting somewhere.

I got to the ER, waited a bit (not too bad), and saw two different doctors; one plastic surgeon, and one internal medicine doctor, both less than half my age. The whole visit was absurd... they didn't do anything the referral said to do, mainly take a swab of the wound, for the purpose of choosing which antibiotic to give based on knowing which bug was infecting the wound. "No, that's not necessary", "come back if it gets worse". They weren't impressed because it clearly wasn't cellulitis... yet. I said the object was for it to not *become* cellulitis. They said I have no fever. I said I also had no fever when I had NF. They said this is not NF. I felt like I was talking to a wall. Really? Oh, I coulda SWORN this was NF!? Huh, whaddya know! grrrrrrrrrrr.......... like I had nothing better to do on a Friday afternoon than argue with ER first year residents that I need antibiotics for an open wound. The plastic surgeon resident had the gaul to say that the skin graft skin seems a bit dry, I'm not taking care of it well. I almost screamed at him- "I have had this skin graft since before you were in high school, buddy, I think I know EXACTLY how to take care of it".

What I should have said before I walked out of there without antibiotics is "the last time we all played this game of 'let's not give Sarah antibiotics for an infection' game, the hospital had to write me a big, fat check". But, you know, we never say these things. I just walked out. I was too tired, and too much in pain. Oh, and my knee was swollen, too. I was thinking the knee swelling was the infection spreading, and that worried me, but again, the ER was dismissive about that as well.

I spent a painful but also enjoyable Shabbat with friends, trying to forget about my issues. But it was impossible to forget about them, pain does not let you forget about your issues. Ever.

On Monday I went to my family doctor. She was a little perturbed that the ER did nothing, and she did the swab herself. Then we had to wait for the culture. She examined the wound, and my knee, and felt the two weren't related. I continued to feel they were related.

I'd wind up waiting the whole week for the culture results.

So now were back to where I wrote up there ⤴ about finding the results on-line, three days ago. That's when I thought I read Strep A. It freaked me out so much, you can't imagine. It was a whole 24 hours later that I learned that it was staph. Mind you, that's no better, and can also cause NF, but for me it's different somehow. In fact, I learned that when I had NF, I had a combination of strep A *and* staph. I hadn't known that before. The infectious disease doctor was looking at it in my file right in front of her. Interesting.

OK, let's now jump to the day after I saw the osteopath, which would be Monday. I had set up an appointment with an infectious disease doctor who I know and trust, at Soroka. I had her cell phone number, and she had time to talk to me. Finally a voice of reason. She made room for me in her clinic the next day (Monday). It was with her that I learned that S. aureus means Staph A, not Strep A. OK, different bug, same bad. She looked at my knee and was not sure how to proceed. If it is swollen because of the infection, I'd need IV antibiotics, and that means hospitalization. If it was swollen because it is reacting, or for some other reason, then I can take oral antibiotics and go home. She didn't know, so she called an orthopedist in the hospital, and set me up to go see him.

I got to him, all the way on the other side of the hospital grounds. He took some fluids from my knee... nah, that didn't hurt AT ALL! No siree! (wehhhh)
It turns out that the fluid was not infectious, and my blood test was within normal limits, and I had no fever, so I got home (four hours later) with oral antibiotics. WHEW!!!!! With our trip to the states coming up days later, hospitalization and IV's were not on the agenda. I wish this could have been taken care of the week beforehand when I went to the ER to get it done *then*. Oh well. Everything at the right time.

I am on a sulfa-based antibiotic. It's the 4th one on the list of what this staph bug is sensitive to, but the first three I am allergic to. Hopefully it'll do it's job. It is wiping me out, that's for sure. I am so, so exhausted, and it's making me dizzy also. Quite unpleasant. Makes me feel weak, tired, weh. It's a seven day course, so I'll be on it until next Monday night, at which point I will no longer have a staph infection on my skin graft, RIGHT? Right! This has been going on for over a month.

The knee is still hurting, and still swollen. Only time will tell if it heals with the antibiotics, or if something else sinister is going on there. I haven't really had knee problems. I'm concerned that it may be PVNS tumors, but I'm not jumping to conclusions. Can't do anything about anything until I get back.

So, I have started on my new migraine medicine, Topomax. I am ramping up to the dose that the neurologist recommended. I have hopes that it'll work, and that the side effects won't make it too hard to stay on! I have a few new tricks up my sleeve for SOS when a headache does start to come on, and so far they have worked. I have stayed out of the ER for migraines now for a few weeks, so that's good. They have started up a few times with me, but as I said, I have new tricks up my sleeve that actually work! One of them I can't use in America, though, I don't have a license for it there. We'll see how things go.

So there are a bunch of things going on now, medicines changing, antibiotics being taken, hopefully this wound on my graft will close, and we're flying tomorrow. It is such a long trip.... we're flying with a stop-over in Moscow. Six people, lots of suitcases, everyone with two passports. Lot's to remember.

And I'm just so tired. I just want to see my Dad already! And my brothers, of course, and cousins, and everyone else there. But the trip is a hard one. It's so, so long. And the infection is right where the thigh bends, makes it very uncomfortable to sit for too long. I wish I could just click my heels....

So, you'll hear from me next over there!
Bye for now!
(BTW, we have a house-sitter this time, so I am much more at ease! )

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.