Lots of things are "off", but I'll get back on.

I just need to talk.

Things have been pretty crazy. I'm not at liberty to say much about a huge issue that has pervaded my week, but suffice it to say it has thrown me for a huge loop. I'll be OK, it's going to take time... it's something that triggered my PTSD in a big way. It's not enough that the steroid shots were messing up my sleep, now this has seeped into my dreams (nightmares), and conscious living as well. I have support, but at the moment it's not enough. But I'll be OK.

I've also had a stomach virus... not a big bad one, just enough to mess up a day (well, 3 so far...). No fever or achiness,  just digestive imbalance. 

Even with these challenges, I got to the gym yesterday, and had a really good workout. Five kilometers on a recumbent bike with decent pedal tension, and awesome pool laps. 

Then, even with the PTSD issues horrendously raging, I baked carrot muffins, put up sauerkraut to ferment, made a good dinner, drove kids around, and got to my Torah class at night.

But by 2AM the migraine was unreal. I couldn't sleep because of the PTSD, although I was exhausted. I had been hoping to exhaust myself enough that I'd sleep like a baby, but that theory didn't hold up. I was up almost all night (as some friends who got messages from me can attest to!), and the migraine was the worst I've had in many months. I think the PTSD got my blood pressure high, and that was the pounding migraine I was feeling. I thought I'd need hospital drugs. But with the magic of Cannabis and some other select pharmaceuticals, I slept most of today, and woke up with the headache at about a "4" on the Richter migraine scale. Tonight, after all day in bed, I'm a bit calmer, and the headache, although not gone, seems at bay.

The report on my hip / femur is that I think the steroid shots helped a little. It helped with the direct hip pain, but my femur still hurts. It feels like a little gerbil is gnawing away at it. I will schedule the MRI's as soon as.... as soon as I can, physically, emotionally schedule them. I am still trying to schedule the one from August from the New York surgeon-- it is causing big problems in the HMO because of the surgeon's stipulation of how he wants the MRI- with 1cm picture cuts through the whole NF abdomen area and upper thigh. That is the only way he can know if he can proceed with the reconstruction/ mesh replacement or not. The HMO can't deal with the special order, though, and for three months I have been trying to schedule some hospital, anywhere in this country, to do this for me. I have one that will, but the HMO doesn't want to pay for that particular hospital. It's exhausting to keep up with. I have calls about this issue at least every other day. This is why I haven't yet scheduled the MRI's that the pain doctor in Ichilov referred me to do. I have to get the first one secured, then move on.

What I am trying to stick to is going to the gym at least twice a week, my Torah classes also twice a week, and aiming for balance. 

With what happened this week triggering the PTSD, that was out of my hands. When pain levels rise, out of my hands (including migraines). But just like I have been aiming for since the first month recovering from NF, I am still aiming for balance. Maybe I should give up on that aim and just accept it all as it comes? I wind up having to do that anyway.

Thursday is the one year date since my father passed away. That's a big one for me. 

I hope he's together with mom, wherever they are. That's all he wanted.

What we want in this world, well, that's not usually what we get.

But in the afterlife? Who knows....

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.