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.

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.