Saturday, October 13, 2018

New pain doctor, debulking my expectations from life

My laptop is too heavy for my lap. My lap now consists of my right leg, and not touching my stomach. Not so simple. Robert went out and bought me a lighter laptop, but I need a smaller and even lighter one. We'll exchange it. I do use a pillow/desk with it when I write in bed (almost always), but that isn't so good anymore either. Too much jutting into my stomach. I have to revamp the system... my left thigh just hurts too much.

And we don't yet know why.
The bone scan came back negative for Osteomyelitis. Which is a very good thing. But we still don't know why I'm in so much pain. Remember last year how all year I didn't take any pain meds with that abdominal pain? That is because it went away when I lied down, so it was livable. This pain in my thigh does not go away, ever. Lying down sometimes makes it hurt more. So, unlike last year when I was so against taking pain meds, I am now taking the lowest dose of Percocet, almost every night, so I can sleep. Otherwise (and even with the Percocet) I wake up in pain. I often wake up if my body went to lying on my left side unconsciously, it hurts *SO MUCH* if I do that. I wake up in agony. Another Percocet, perhaps with a half sleeping pill, and I'm back to sleep.

Last week I went to the pain clinic in Ichilov hospital in Tel Aviv. That is where I have my orthopedic oncologist for the PVNS, but I'd never been there for any other medical care. Until this visit to the pain clinic. My primary care physician heard that they may possibly be able to do the pain shots in my abdomen if these wear off, so she got me an appointment there.

I walked into his office, and he didn't even make eye contact (oh, one of those types of doctors, I said to myself). I handed him my referral. He read it carefully. Then he asked for the Mayo clinic paperwork. I handed that over. I told him I can translate any English if he needs, he said "no need". Still does not know what I look like. He then asked me, still without looking at me, what is the actual diagnosis? I said, well, there isn't really one. It seems that whatever the problem is, is in my abdominal wall muscles because putting the steroid shots there took the pain away. It could possibly be my mesh and clips in there, and this surgeon in New York put forth a plan for reconstruction, but I haven't decided yet if I'm going to do it or not.

He asked a bunch of more questions. We talked about my migraines, and when he asked if I ever have numbness in my appendages, I told him about the last time I was practicing horn every day (over a year ago), I lost feeling in two fingers on my left hand, and it only came back after I stopped playing and made many visits to an osteopath. I didn't know if that would happen again if I started playing again, because of all these pain issues I haven't been able to play.

He was looking at me by this point. We were talking. I was relieved to see his eyes and compassion.

This is what he summarized:

"I can do those shots for you any time you want. But that is not the goal... I don't like at all that there is no diagnosis here. You went all the way to the Mayo clinic, the best of the best, and came back with pain shots and no diagnosis. That is disappointing. I am not satisfied with that. I am sending you for lots of tests... including a whole body MRI. I want to rule out spinal cord problems."

(I told him, but I don't think I've told you, that I have had spinal pain, including one right rib, for months now. I didn't talk about it though because, well, it's not screaming for attention, It's just there.)

He sent me home with a slew of tests, that even until now I have not looked over. The paperwork is still in my bag unopened. He mentioned MS, but said not to be scared, he didn't think I have MS, but he wants the tests to be done thoroughly and correctly, so he wrote "suspicion of MS".

So that's where things stand. I told him about my leg, also, but at that point in the week I didn't have the bone scan results yet. Now I do. He said that anyway bone scans are cursory, they don't tell much. He wants MRI's, and I don't know what else. As I said, I didn't look at all the referrals yet. I can't handle it. I honestly am so sick of doing tests, and setting them up, traveling to them, messing up a day or two depending on the backlash (migraines).

I am beginning to realize that my goals of playing horn again, or being a birth coach again are not realistic goals for me. My goal has to be getting healthy and staying healthy (as if that has been in my control). It's a full-time job. My kids need me a lot... it seems more than ever. Babies take a lot of time and you think things will be better when they are older, but the hardships emotionally take a lot of physical and emotional energy. And I'm of course still driving them to activities and bringing them to their appointments too. Eye doctors, hair cuts, teeth cleanings, dance classes, you name it. Even Shifra needed an MRI and I had to drive to Rechovot for that last week. It doesn't go away when they have a bus card. They still need me full time. They need good food all the time, too. Lots of it. Four teenagers. And I want to be there for them, and I am in pain. It's incredibly hard.

I managed to go to the gym once last week. I am aiming for more than that, but the pain in my thigh just depresses me and stops me. The gym has a pool, though, so even if I feel I can't work my muscles on ground, I can go into the pool. I LOVE water, and most of you know I'm a swimmer (I had a lifeguard licence back in the day!). So getting to the gym is a priority, and being there for my kids, That's all I can do with all this other stuff going on. I'm just slimming down my life, and expectations, so life may be less disappointing.

That's the update. More pain, no answers.
I am scared out of my mind that this thigh pain will continue on and on with no diagnosis. I don't think I have it in me to do that again.

Thursday, October 4, 2018

Out of the frying pan, into the fire?

Dear G-d, what is it you need from me to do that I am not doing? I know I'm not perfect, but why can't I enjoy pain-free days for more than... what, a few weeks? two months? We're talking 11 years here. Please reveal to me what it is you need me to do and I'll do it.

It was brought to my attention by a doctor friend of mine that steroids can depress the immune system. I mean, I knew that, existentially, but it didn't occur to me while getting these steroid shots into my belly in July. And in the paper that I signed at the Mayo clinic to agree to the possible complications and warnings about the procedure, that factoid wasn't mentioned.

So that may have been how this [still alleged] infection set in. My femur is still hurting all the time, and I need pain meds at night because it gets worse at night.

I saw my infectious disease (ID) doctor today, and I hadn't seen her since spring 2017, when the little hole in my skin graft wouldn't close up. At the time, she gave me oral antibiotics to combat that infection. They didn't work. That is the hole that closed up only months later when I used Manuka honey on it.

She said "so what's been going on since then?"

(thought bubble over my head: oh, nothing, just getting lots of manicures and pedicures with all my luxurious easy days...)

 She concurred that there can be immune challenges after steroid shots. And if, like I suspect, that the infection has been there for a long time (year & a half) and just recently settled in the bone (which isn't a healthy bone to begin with because of the surgeries and arthritis), it may be that the steroids channeled the infection to the weakest point. I don't know.

It leaves the question of if & how to repeat the shots, kind of hanging in the air.
And quality of life questions, but you know that already.

I have an appointment with the pain clinic in Ichilov hospital in Tel Aviv on the 10th to see if they can do these pain shots. I don't know if I'll have an answer from the bone scan yet by then, though.

It will become clear soon, I hope. I now have a bone scan scheduled for Sunday morning (the 7th). The ID doctor wants me to come back with the results a week later. If the results show positive for inflammation/infection, the next step isn't at all fun... a bone biopsy. Now, I was with Sabrina (of blessed memory) when she had a bone biopsy once... you could hear her yelling two hallways away. If I need a bone biopsy, I'm going to call my private orthopedist to do it in a private hospital (yay, auxiliary insurance), and ask for twilight sleep. No way will I go through that awake like I witnessed Sabrina going through. I would need the biopsy to confirm infection, and more specifically which bug. I have so many antibiotic allergies, we'd have to test for a bug to know how to direct the choice of antibiotic. Then, fairly long-term antibiotics. Surgery? Could be. But I can't "go there" with that thought.

I know that a few days ago on the holiday of Simchat Torah, I came to synagogue and danced (with the women) to our whole community singing Torah songs. I danced because last year I was in horrible pain and stuck in bed, and next year Who Knows. So, I danced a few days ago. Only could stand it for about 10 minutes, but I danced. For the Torah, and for Hashem.

Thursday, September 27, 2018

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.

Thursday, September 20, 2018

Finding a new balance

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

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

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

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

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

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

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

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

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

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

Saturday, September 15, 2018

Huge good things happening, Thank God

What a whirlwind.
Since I came back from the US a month ago, I literally hit the ground running, getting things ready for Azriel's BarMitzvah, and for the high holidays. Things have been amazing... with the pain shots still in effect, I can live life. I can Live Life. It's been a long time since I could say that for more than one blog post in a row.

One big theme this month has been for me to re-learn how to be in life, and what are my present needs. It's not as simple as one would think. I spent most of a year inactive, dealing with intense pain. Then, all-of-a-sudden, one day, the pain disappeared (mostly). I came back, and without any physical or emotional rehab, just jumped back into life. It has left me at times distraught, needing down time, needing lots of alone time, and extremely tired on a regular basis. My migraines are returning, too, unfortunately. Fairly regularly. I got some good "front line" medicine "imported" from when I went to Colorado... and that is helping, but not sure what to do when that runs out. They don't sell that type here.

I need a lot of down time, I'm exhausted a lot. I need a lot of quiet time. I think I've gotten used to the slower life style of being in constant pain, opting out of many things. Not that G-d forbid I *want* that, no no no. I just have to strike a balance.

I also know in the back of my head that this being out of pain thing may not be "for keeps". It might be, but it might wear off in about a month, too. No way to know. I haven't yet found an anesthesiologist who has the right equipment to do these shots... but I haven't exhausted all my resources yet. And, in the back of my head, the reconstruction surgery lurks, with a big question mark next to it. First I'll get the MRI for the doctor in NY, then we'll go from there. By then I may know if the pain shot effects are wearing off or not.

Moving right along... LIFE! Life is moving right along.

I am now the proud momma to FOUR teenagers! Azriel turned 13, and my oldest is one month shy of being 20, so for one month in my life, I have four teenagers in the house! Baruch Hashem. And what kids they are. I am so proud of each one of them and the stages they are at in their lives, I feel tremendous blessing. Being able to enjoy Azriel's BarMitzvah with him was such a blessing, I don't have words to describe my tremendous gratitude to G-d for making that happen.

There were three stages to this BarMitzvah. The first stage was for Azriel to read from the Torah, for his first time ever, in the synagogue that his great-grandfather (on Robert's mother's side) used to pray. This is a tremendous thing, Robert's ancestors were some of the original settlers of the northern Israel town of Rosh Pina, in 1878. The synagogue they prayed in still stands, and has the original floors and seats, and even some art work painted by Robert's grandfather. You can imagine how special it was for this youngest of the Klein family to carry on tradition to read Torah there. We had very special guests with us there also, Robert's northern cousins who still live there. His oldest cousin is nearly 100 years old, may he be blessed for many more years of health and strength! That hundred year old cousin joined us, and was right next to Azriel when Azriel read Torah. Monumental.

Azriel and cousin Aviv, almost 100 years old, who was born in Rosh Pina.

Dovie carrying the Torah

Ya'akov doing "hagba", holding the open Torah, high, for all to see

The sign on the ancient synagogue

We made an overnight of the event. Rosh Pina is a long drive from our town of Be'er Sheva, so we stayed with some other cousins of Robert's. My brother Peter was with us, as well as Robert's brother Michael. It was so deeply special.

We returned from Rosh Pina with a day and a half to prepare for the big part of the BarMitzvah, Azriel's Torah reading for Shabbat. And a big kiddush (lots of wine & food for many people after services) had to be organized. I had been cooking all week, but it was still a daunting task. But we all did it together. Azriel's Torah reading was beautiful, wearing his new suit. He did the whole portion, the haftorah, and gave a d'var Torah... which is a speech giving a lesson learned from the Torah portion. All and all, we were beaming with pride.

But what a busy time! I had a houseful of family (extended), and out-of-town guests put up with my friends and neighbors. I am *so* grateful for everyone who helped with the accommodations and making meals! I could NOT have done it without you all! Especially the Quinns, Greens, Wachspress's and Shapira's. Thank you with all my heart!!

With the part of the BarMitzvah with the most pressure for Azriel being over, we immediately had to switch into Rosh Hashana mode... it was coming the next day. Lots more food preparation, cleaning, laundry, and hosting family & friends! I started out this blog by saying what a whirlwind, and I meant it!

Rosh Hashana is sort of like two days of Shabbat in a row, so lots of preparations, emotionally as well as physically. Thankfully we were invited out for a few meals, so that made things a bit easier overall.
As opposed to last year when I spent most of Rosh Hashana in bed, this year I was in synagogue for all the services, and got to pray standing up as much as I wanted. It is really like a miracle to me to be relieved of that abdominal pain. A pure miracle.

With Rosh Hashana over, we had one day which was a day of fast. It was welcome after all those big meals!
Then after the fast day was Azriel's big party at the beautiful event hall. That was last night. It was *beautiful*, if I do say so myself. It very much represented the humble boy (man?!) Azriel is, and his friends showed him a great time! One table was full of 13 year old boys. It was quite fun. We used the same DJ which we used for Shifra's BatMitzvah three years ago, and he was spectacular. Perfect for us. The food (which I didn't have to cook!) was fabulous, the atmosphere beautiful and intimate, and having our friends and community celebrate with us is just the best, warmest thing in the world.

I missed my parents, though. I actually cried a lot about it the morning before the party. The mourning was so palpable. I really really miss especially my father (he died most recently). Also of course Robert's parents were missed. I wrote in my speech to Azriel "May the memories of Naomi and Dolph Klein, and Theda and Philip Kashin always be blessed, and may their best attributes be carried on in your life." I didn't dance at the BarMitzvah because of the mourning practises during the first year of a parent's death. That was hard (not to dance), but I appreciate honoring my parent's memories that way.

Last night after the party, we all didn't get to sleep until 2:30 am. Everyone was exhausted but also wound up, and Azriel *had* to open all his presents, of course! What a night. It was so blessed and beautiful, thank G-d. I wrote my speech for him based on this blog entry... it was the blessing I had written for Azriel when he was 3 and a half, and I was scared to go into a big surgery the next day. I wrote a blessing for each of my kids just in case they have nothing else to hold onto from me after that surgery. I was that scared. The speech went into detail about those attributes I wrote about him, and how that is still him. It was a true blessing to take those words written then in fear, and change them to all good, positive energy.

I've had a houseful of relatives non-stop for a few weeks, and that has also been great. The kids have had a continuous supply of uncles (and an aunt for the barmitzvah Shabbat!) and cousins. It's all good.

Today I had the opportunity to help a mommy who had given birth 12 days ago, and was having nursing problems. When I came into my house after synagogue, she was there waiting for me with a puffy face, having been crying, and holding her fussy/crying baby. I had helped her give birth to her last baby (not so long ago-- a year & 4 months ago! The same age difference between my first two), and I was so honored that she came for help. We spent an hour in my bedroom learning about the issues and learning how to fix them. An hour later a happy mommy and sleeping baby left to go on their way. Oh my gosh, it is soooo fulfilling to help moms & babies! Can I start thinking about maybe going back to that a bit?

Can I rely on being out of pain? No. Can I know I won't need that big abdominal surgery? No.
But in a little while, I may be ready to try again... if the pain doesn't return, I'll have more confidence to go forward. If it does, well, I'll have to take it from there. I still have to find someone who can administer these nerve block shots here in Israel.

But for now, a few pictures from the BarMitzvah (taken with my cell phone, not the professional ones yet) to close this. I feel a headache coming on...
Dov giving his beautiful speech to Azriel

Robert giving his speech/blessings to Azriel

My brother Peter singing one of Azriel's favorite songs to him
(Shifra holding words/chord sheet)

Doesn't that smile say it all?

Shifra, me, and my dear friend Miriam

The proud parents