Sunday, July 3, 2022

realizations and questions

 I am slowly realizing that the pain I am dealing with these days, for many months now, and in some cases years, is a result of the reconstruction surgery I had done three years ago. In my physical therapy we are now addressing my knee pain on the same side as my thigh pain, on the same side where the NF was. You see, at the NF surgery they took out a large portion of skin and fascia, and some muscle in my lower belly and upper thigh. This we knew. Then they put a skin graft over the whole area to cover it up again because the skin and fascia was gone. 

At the reconstruction surgery I had in NY three years ago, the surgeon removed the skin graft (and some of the mesh that was under it) and pulled together the healthy skin from the upper thigh and lower belly, making a large scar in the fold of my leg area by my lower left abdomen. The scar was a line instead of a skin graft. This pulled the leg skin, and part of a muscle that the surgeon moved, up toward the belly to meet the healthy skin from the belly. He literally took out the "patch" (graft), and pulled the skin together to cover the hole.

At the time, it helped tremendously. I was out of pain for a few years. I think it was the taking of the mesh that helped my pain, but taking away the graft also solved some problems. But, what I am suffering from now in my thigh and my knee is a result of pulling everything upward and sewing it together that way. My thigh is hurting around the joint and the scar, but manipulating the scar and fascia (very very painful at PT) seems to be helping a little. My knee has also gotten messed up by this pulling upward of the skin and fascia. It hurts every time I go up or down stairs (which is a lot if you know my house), or get up from sitting.

The physical therapist is addressing this, but we are not sure if we can alleviate all the pain. We have succeeded in alleviating some of the hip pain, which I am thankful for, but the knee is pretty messed up, and it has been so for a few years, so we are not sure if we can correct that.

Meanwhile I am still needing to jump through hoops to try to get this MRI of my abdomen, pelvis, and thigh. It is actually three MRI's. I went to see a random surgeon on Friday, and he said I am not talking to the right specialty, I need a plastic surgeon to deal with soft tissue problems. He wouldn't re-write the MRI recommendation that I have from my New York doctor (who himself is a plastic surgeon). 

I tried to get an appointment with a plastic surgeon for this purpose, and the appointments are way into October before anything is available. So today I got an "urgent" referral for a plastic surgeon, which I was told is what I need in order to get a sooner appointment. If I find out this week that it won't be early enough, I'll find a plastic surgeon privately and go through the private insurance. Mind you, this is all to *rewrite* a recommendation for an MRI, which I technically have already from my New York surgeon. The appointments for the MRI's are supposedly in August. At some point I may just throw up my arms and not fight for the MRI anymore. I mean, it will just point to more surgery if I send it to my NY doctor, right? Is that the right move? He got me out of pain once, can he do it again? But will I pay for that surgery in pain later on as well?

Being in pain is depressing. It's getting to me. Over Shabbat I walked to synagogue (shul), then to a friend not too far away, but farther than my home, then back home. We had a lovely lunch with very close friends, and that was so good for me. But the walking, and going up their three flights of stairs wasn't good for me. I am in a lot of pain today, and today I also had PT, which often puts me back in strong pain, if only temporarily.

But really, what can be done? The PT is helping for the thigh pain but not the knee pain (yet?), which we just started to address. I have to keep the faith that it will help me with my knee too. But is getting the MRI a necessary goal? I am needing to jump through hoops to get the insurance to pay for it, and when I send it to my NY doctor he'll devise a surgical plan I'm almost sure. Knowing what I know now about the other prices for surgery to the body, is that my goal? Yet *another* surgery (to date there has been 14)? But maybe it can get me out of pain like the last one did, although we see it was temporary, but two and a half years pain free is something, not nothing. You see my dilemma? It's complicated. I don't want to wind up in a wheelchair, that's my biggest fear, along with having constant pain.
I pray for answers.
(CT scan of lower abdomen and pelvis tomorrow)

Friday, June 24, 2022

Nope, no good fairy, and so far, no MRI

 Well, I was wrong. There was no good fairy. The approval I thought I had from the national insurance for the MRI didn't actually happen. I mistook the approval that did come through for the approval for the MRI. Instead, it was only the approval for the contrast material *for* the MRI. So the contrast material is approved but the MRI isn't. Lovely system. So, in short, I don't yet have approval for the MRI. We can't begin to investigate this pain problem until we have an MRI. The insurance wants me to get a recommendation for the MRI's (there are supposed to be 3 of them) from someone here in Israel. I'm not really in contact with any surgeons here, so I had to just choose an anonymous surgeon and hope he will write the recommendation after I explain everything. I will show him the recommendation from my doctor in New York and pray that he'll write the same thing, but in Hebrew, from Israel. If he won't, then I have to look for a plastic surgeon who might. The doctor in New York is a plastic surgeon, so I'm not sure if a general surgeon will do it. In short, I'm back to square one.

In the meantime, I do think the physical therapy is helping a bit. I think the pain in my hip is overall less. I'm being diligent about doing it at home as well as at the gym, and I think it's paying off. The physical therapists I work with are concentrating breaking up huge, hard adhesions (which they point out to me so I can feel, too) and working on massaging on the scars. I think much of the nerve pain I am feeling is from the scars. It hurts like hell while they are doing it, but I think it's helping overall. Maybe I can avoid more surgery after all...we'll see how things develop.

It's been a hard week. I had a week-long headache, mostly that I could work through, but on Wednesday night it became a migraine. And I mean the worst migraine I've had in years. It hurt so much I thought my head would just literally split open. I was wailing and moaning in pain, rolling around my bed. It was B A D. I threw-up a few times as well. Somehow by the grace of Gd, I got to sleep a bit after the second throw up, but the pain didn't totally go away. I fitfully slept through the rest of the night, and stayed home the next day, nursing a migraine hangover. It was really really awful. I managed to stay out of the hospital, just out of sheer distain for the hospital and all that entails. I'm OK now, Friday, but still laying low. Well, I did go to the gym today, but I took it easy.

I'm going to rest a bit now before Shabbat. I'm exhausted.

Shabbat Shalom to all!

Thursday, June 2, 2022

The Good Fairy with pain?

I played the part of the Good Fairy in a play in third grade, and I had a solo song I had to sing which I stressed over for weeks before the production. I still remember that song! It was about waving your magic wand.... "You just start waving your magic wand, waving your magic wand, wave your wand with me and you'll see everything will be alright!" I right now at this moment have the exact tune running through my head. Some things we never forget.

I'm telling you about this because someone waved a magic wand- maybe my regular doctor- with regards to my MRI. When I first asked for the referral from my health clinic, based on the recommendation of the New York surgeon, the answer I got the next day was that I needed a recommendation from an Israeli surgeon, an American one wouldn't do. I thought 'what a bother, I don't have an Israeli surgeon to ask'. My doctor in the US for a well-deserved vacation, but she told me I can Whatsapp her if I needed anything. So, I did. I told her that they are not accepting the New York recommendation, and can she help me somehow. I don't know, but she may have waved her magic wand, because the very next day I got the approval from the Health fund that they will pay for the MRI, with the recommendation 'as is'. Great. So now I am waiting to hear back from the MRI company to give me a date. It will surely be quite a bit in the future, and I'll have to work on getting it at a closer time. We're getting there.

In the meantime I am continuing with life as best as possible. I'm still doing the gold-smithing jewelry-making every day. We have a lovely workshop that engaged couples come in and we make their rings together with them. We (I) "teach" them what to do with our machines and fire burnishers, and they take part in the making of their rings. Sometimes the man works on the woman's ring, sometimes the opposite, sometimes they work on their own rings. It's a really nice workshop, and I enjoy getting to know new couples a few times a week. I always work it into our conversations somehow that I am also a doula... for their next stage in life after the wedding. :) So if anyone out here in blog land knows of an engaged couple that may be interested in doing this, we are booked months in advance, but you can give them my number or email.

I am still going to the gym three times a week, and feel pretty strong regardless of having pain, thank Gd. I just could do without the pain. I managed to go to an out-of-town party last night; the son of good friends of ours got engaged, mazal tov! That was fun, but I was in a lot of pain by the time I crawled into bed. Then today I had physical therapy and it hurt a lot, and I got some new exercises to do.

We are coming up on the holiday of Shavu'ot. It is the holiday that the Jews, wandering in the desert, came to Mount Sinai and received the Torah. It is also the holiday of dairy, lasagna, cheesecake, Ben and Jerry's ice cream, and....well, I made that part up, but it is famous for eating dairy. It comes this year on the heels of Shabbat going out. So we have a lot of cooking to do tomorrow for Shabbat as well as Shavu'ot. We have staying with us still Robert's brother Larry, and our friend Ayala who just returned from six months in Nepal and India. So, full house again. The Klein hotel is active.

Things are stable in an unstable pain kind of way. I am grateful for what is.

Thursday, May 26, 2022

No despair

 After sending him another gentle reminder, my NY surgeon finally sent me the recommendation for an MRI with contrast. Now I have to go to the health clinic tomorrow and get a referral based on the recommendation. Then the referral has to go through the system to get an approval for the health fund to pay for it. So much processing before I can even make an appointment for the MRI.

Meanwhile I am using Voltarin medicine for the pain. It helps a little.

There is still physical therapy and my amended work-outs at the gym, but nothing is helping in any significant way. The other day I thought that a certain "light traction" maneuver my PT used actually helped, but it didn't last, and things are right back to where they were before.

It gets depressing not being able to walk to synagogue; that is a primary way for me to see my friends and community while also praying and hearing the Torah. My PT suggested I use my crutches to get there, but it doesn't really help much. I could use the wheelchair, but I *hate* using the wheelchair. Emotionally it's not good for me. I've written about that before. But I might do it to get to shul (synagogue) on either Shabbat or the holiday of Shavu'ot coming up. It really is good for me to be in shul, and depressing when I can't be there.

Recently I have taken two of my kids out small feat with this pain. I can't say it was easy, but it was important to me. They both really needed some things, and while they are old enough to shop themselves, having me, my opinion and my car to go places is very helpful for them. Especially Shifra. She is right now on a "Birthright" (Taglit) tour as an Israeli accompanying them. She really needed some things before her trip, and I was happy I could do it. I took the Voltarin and girded myself for a few hours of going around shopping. We got what she needed, and I went home, made dinner for everyone, and went immediately out again to see a concert about an hour away. A friend was playing solo horn for part of the concert, so I wanted to go to support her. The Voltarin effect was still working, so away I went. I was really in pain during the concert, but I made it through and drove home (another hour drive) to collapse into bed.

Then yesterday I took Ya'akov out for an impromptu shopping trip. Many tried on shoes at many stores later, and he had two new pairs of shoes. I was spent, though, afterward. I didn't make dinner. Nobody went to bed hungry.

Oh, and did I tell you that the week before this we had a ton of guests for Shabbat? It was all of Robert's brothers (a rarity considering that two of them live in the US, but were here visiting), his niece and nephew, my brother, Robert's sister-in-law....the whole gang, including also all my 4 kids, daughter-in-law and wonderful granddaughter. It was actually very beautiful to have everyone over, but between the two big meals, it was...well... a lot. 11 people for dinner, and 15 people for lunch the next day (26 meals). And many of those people sleeping in our house. I don't know how I did it; the Voltarin helps, but not that much. I was running on adrenaline. Robert cooked a lot, I cooked also, Shifra mopped the floors, I took care of bedding and linens for everyone, and generally kept telling myself to thank Gd that I am well enough to have everyone over. Was I in tremendous pain? Yes. But my soul felt at once overwhelmed, and also at peace. It's hard to explain. This bout of pain isn't giving me the despair that I felt for the two years before my big reconstruction surgery. That was real despair. I didn't know if anyone would ever be able to help me. Now that I know this extremely special surgeon in New York, and he is supporting me with the MRI recommendation and whatever comes next, I do not feel the despair I felt last time I was in lots of pain.

There are times of depression, but not despair.

I only wish the cogs of the national health care system could work faster. Well, once I get the approval for the health fund to pay for my MRI, I can possibly get it done privately. I have private insurance, that we bought into a mere nine months before I got NF, so everything related to the NF is not considered pre-existing conditions, thank the Good Lord. There is a co-pay, where if I went through the health system it would be absolutely free, but sometimes it's worth it. Appointments for MRI's are often quite a few months away. My hope is to go to New York this summer some time to see my doctor (and my 101 year-old aunt, and my cousins and friends!). One step at a time. Got the recommendation, now need the referral and approval.

In the meantime, I'm being the best "me" I can be. For me, my husband, and my family.

With the help of God.

Wednesday, May 18, 2022

On the eve of my coma-versary

My friend said "I hope your pain is better, you didn't talk about it at all" at our dinner together last night. No hun, it's not better, I just don't like to talk about it. I write about it in this blog, but I don't talk about it much. If I'm "on-line" with other NF survivors (I am part of a support group of people who have had Necrotizing Fasciitis, all over the world) I talk about it if I'm asked how am I doing. But in general, if you're not my husband or physiotherapist, you won't hear about it much, if at all. I don't even talk about it much with my family doctor. I only talk about it enough to get what I need (a referral for a CT scan, for instance). I mean, how much can a person discuss their pain? It's not really a conversation starter.

But yeah, I'm hurting big time. It sometimes wakes me up at night if I zig instead of zag, or roll onto that side by mistake. When I wake up in the morning, the first thing I feel is pain. When I walk, get dressed, do the stairs in either direction, get into the car, get out of the car, sit in a chair, stand up from a chair, you name it, that pain is always with me. And it's not getting any better with the intensive physical therapy I am doing. I may actually stop the physical therapy if it's not going to work. Not sure yet about that.

I gotta say here, on the blog that I opened for saying the hard stuff, it SUCKS to have constant pain. My fellow NF survivors can relate, I'm sure. Many of them are also in pain much of the time.

I had two and a half good years of no pain. (I'm 15 years after NF). That was after my reconstruction surgery in New York. But it's back. It's not the same pain I had before that surgery, though, it's totally different. I described it to my surgeon in New York when I wrote to him asking for an MRI.

He wrote back saying that he remembers that I had a "subcutaneous femoral..." hurdeehur........ I don't remember how he said it (I could go back and quote his email, but isn't it funnier to say hurdeehur)? Amazing that he remembered that from almost three years ago; he has a busy thriving practice, and I was a long time ago. He said he remembered that hurdeehur thing, but he wanted to go over my surgical records again and he'll get back to me. I'm now waiting for him to get back to me. If I don't hear from him this week, I'll gently remind him of my letter at the start of next week.

"But you're healthy" said my dear friend Miriam while we were drinking tea by the moonlight in my garden. "This time, you're healthy". Yes, it's true. I feel like I'm in a good place emotionally, and my body is strong. Thank the Good Lord for that. But the pain. It is awful to be in constant pain. It's almost all I can think about because it's always there. I'd be much healthier without it.

So we wait to hear from Dr. Margiotta, the New York doctor. The not knowing is the hard part. Not knowing what the pain is from, not knowing if he can help me, not knowing if we're going to New York this summer to see him, not knowing if I'd go for an exam, or for surgery, or... both?

Thanks for letting me confide in you. It makes a big difference that I can get this out here.

PS- the title refers to this date being the day that I woke up after the induced coma from having NF.