Steroid shots; I'm going for temporary

Looks like steroids are a way of life for some... and I'm among those in the ranks. I don't love the notion, but they work. I know it's a temporary fix, but I'm going for less pain in my life. It doesn't address root problems, but I can only do what I can do.

Last Thursday I was at Ichilov hospital in Tel Aviv to see my orthopedic oncologist about my left hip pain. I was going through my checklist of what the pain could be from, and after ruling out osteomyelitis, PVNS was next. I had that 10 years ago, and underwent a few surgeries in the hip because of it. It has a 50% recurrence rate, so I had to go check that out.

The orthopedic oncologist said he'd take a look at my MRI's that I have to do in the next few months from various other doctors, but he was almost 100% sure that what I am suffering from is bursitis of the hip. He offered to do steroid shots into my hip right then and there, and after thinking about it a little bit, and discussing it with him, I went for it. Even though steroids can lower immunity, and even though I have an open, active infection going on right nearby where those shots were going, the infection being in my skin graft. The orthopedist wasn't concerned about that infection... that concerned me. But I went for it anyway. We will go to great lengths to be out of pain. At least, that's where I've come.

The shots hurt like hell. In the Mayo clinic they were administered into my stomach wall muscle after a local anesthetic was given first. Here, it was straight into that hip joint with the needles. Two places. The rest of the day I was in intense pain, could barely walk. I slept with a heating pad on my leg, and it was a bit better the next day. Shabbat was a little better yet, and today (Sunday), I actually got myself to the gym to get working again. It hurts, but I do think the steroids are helping already actually. The injection points look pretty clean, I think I'm OK. There is one guy on my NF support list who got NF through a steroid injection into his hip. But you can't live in fear.

Interesting outcome is with the open wound on my graft- it seems to have reacted positively to the steroids, and overnight it formed a decent, tough scab. Usually it scabs, but after a shower, the scab comes off and it oozes again. I have been cleaning it like four times a day from gook. But after the steroid shots into my hip, it dried up and formed a durable scab. How interesting, right? It's been dry for three days now... life is full of surprises! I know that the staph infection in that area isn't gone, steroids don't kill infection, but not having an open wound is a good thing.

The first night after the steroid shots I didn't sleep *all night*. I didn't have that effect after the stomach steroid shots at Mayo. I was just wired awake, no matter what I tried. I've been making up for that missed night since then, headachey and tired a lot. But like I said, I got back to the gym today, did 5 km on the bike at a decent resistance, and a lot of weight training and stretches. It's hard work.

I am in pain in my hip now, but it's tolerable. I'll turn on the heating pad again when I go to sleep.

In the meantime, I saw good friends on Shabbat, and celebrated Dov's 20th birthday (!!) with a home-made cake. First home-made birthday cake I made in a long time, baruch Hashem. It was a gluten-free carrot cake, and it came out great! We had a little family party for him last night.

I hope I'm entering a new phase in ability... if the steroid shots keep warding off the pain, who knows what I am capable of! But it's gonna take time. I'm tired... a lot. But not giving up. Not giving up.

Missing my father on his would-have-been 88th birthday. I had a good cry Friday night, not even realizing it was his birthday. My soul knew, though. I just want to pick up the phone and talk to him, joke around like we always used to, tell him he's the best and wish him a happy birthday. In a few weeks, we will have closed an entire year after his passing. Hard to believe. I miss him terribly. There was never a gentler soul in the world.

I'm not ready to stop grieving him, as per tradition after the year is over. Well, not really "stop grieving him", but go back to resuming all the "normal" things one does when they are not in the year of mourning. Going to live music concerts (I miss those), buying new garments, going to public parties. For me, it's been over two years that I have been basically out of the swing of doing these things. My mom died, then after her year of mourning was finished, four months later my father died. It's been pretty intense. I'll get back into activities as I feel I can. I just keep making paths around the big hole that is in front of me all the time, and I go on. Sometimes I fall into that hole... the hole of losing both my parents in what feels like one-fell-swoop. Hard to incorporate.

Happy 88th in Gan Eden, Dad. I love you and miss you.

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.

Retreat, day 3

Wow, what a time this has been. I don't even know where to start.

I will start with the icky stuff and get that out of the way.
Note to the wise- don't ever do an MRE!! (That is an MRI of the small intestines). I did one on Sunday (at the beginning of this week), and it was hellacious. I don't have results yet, they should come soon, within a week. After fasting for a night and half the day, I was invited (told) to drink the contrast dye stuff before the test. I did that, fairly easy to do that. Then I went into the MRI machine.... placement ON MY STOMACH! It was horrendously painful. Hard board, no hole to put my face, so my neck was craned sideways, hands up with an IV loading me up with who-knows-what. That lasted 45 minutes, without being able to move. But in the middle they had to stop the machine and give me yet another shot because my intestines were too active, they couldn't get clear pictures, so that shot was to stop the activity in my intestines. OK, so that part was over.

But the worst was yet to begin, little did I know.
The secretary told me I'd have some diarrhea the next day. What she didn't know is that my body QUICKLY likes to expel poisonous things. That's why my intestines were so active in the MRI machine... OMG. The scenarios that followed that test were horrific. Severe diarrhea, like every 3-10 minutes. And nausea, and I threw up once. My friend who accompanied me to this test was waiting for us to be able to leave, but I couldn't leave the bathroom in that place. When we finally did leave (I felt I was at a bit of a break), we got caught up in traffic while she was taking me back to the train station in Tel Aviv, and I thought I was going to explode in every direction. I just sat in the passenger seat moaning, trying to wait until we finally got to the train station. Traffic... no U-turns... kill me now. We FINALLY got to the train station and I went straight into the bathroom and stayed there until my train. Then once on the train, I was in that little icky bathroom more than in my seat. So, so so un-good. I got home finally, and couldn't even hug the kids or listen to them talking, I had to go straight to the bathroom, almost all evening. All told, it was about 8 hours of insanely painful, intense diarrhea, every 10 minutes or so. I was trying to drink so I didn't get dehydrated, but I couldn't keep up because I also felt so sick. I did finally sleep, and I slept through the night, thankfully.

When I finally arrived at Dr. Frischman's house on Monday, I was a dish rag. My first treatment on this "retreat" showed dehydration, slow, choppy (or empty) pulses, and big bad general state of being. But I was so relieved to finally be there... I felt I had landed. Dr. Frischman gave me a long, intensive treatment, both to balance my medicines (Chinese medicines, that is) and to start healing my body.

kind of what the shelves look like in Dr. Frischman's office.
I'll get you a real picture of them for next time.

I don't know how to say in any succinct way how amazing this has been for me, and it's only three days in. Dr. Frischman and his wonderful wife are heaven-sent to my life. Of that I am sure. Each day I am getting two intensive treatments, and healthy, home-cooked foods, and a warm, loving environment. Just that alone is so healing. But it's not at all just that. The treatments are VERY intensive, and often 3-4 hours, and both Dr. Frischman & I work very hard. He is immensely intuitive, and my regimen of Chinese meds changes in a dynamic way from treatment to treatment.

He tests what my body needs by literally asking my body... he uses kinesthetic muscle testing to know if my body needs that medicine or not. He intuits which ones to test on me based on my pulses. Pulses meant in the Chinese medicinal sense-- each wrist holds secrets of how each vital organ in your body is doing. There are three pulses for every organ (spleen, lungs, heart, liver, intestines, stomach, etc). A superficial touch will read one level, a deeper press into the wrist another level of how that organ is doing, and then a deeper pressing into the wrist for the final reading of the organ. It gives the practitioner clues-- no, secrets-- kept deep in the body. Based on the pulses, and on muscle kinesthesiology, Dr. Frischman intuits what the body needs at that given time. It's brilliant. So much more comprehensive than the Western medicine prescriptions.

We have narrowed down what seems to be the main problem for me with this pain- it seems like it's infectious in nature, not prolapses as was originally thought (thought by the CrowdMed detectives, not Dr. Frischman). It seems that my liver is quite impaired by this infection (empty deep pulses quite often). It seems that it is that ball or cyst in my abdomen, enclosing old infection. Not unlike the lipoma that I had and which was cavalierly removed (in pieces) by the surgeon at the original hernia surgery that lead to NF. This infection may even be from that time of the NF. It may be from the skin graft infection I had last spring for four months, we don't know. Heck, it may even be left over from the infection-of-unknown-character that lead me to have a c-section for Azriel's birth. There have been plenty of possible sources of infection which invaded my body repeatedly over the years.

Dr. F is doing many things in treatments; manually breaking up scar tissue. That is VERY painful, but I have learned coping mechanisms. I have to, there's no choice. Scar tissue is not only in my abdomen, but also all over my liver/ribs, and back/lungs. It needs to be broken up so the organs can survive. He did some very intensive work on my liver yesterday, and today my ribs, skin, and liver feel so bruised. But he's also building me up with the Chinese medicines/herbs, and it's going to balance out.

"Cupping", which Dr. F does in my case with one cup, suctioned
onto my diaphragm area to break up liver adhesions, but he moves
it around with the help of oils. (It's actually VERY painful!)

He's also using acupuncture (sometimes very deep, with 5 inch needles!), moxabustion,

This is a form of moxabustion; Dr. F puts that smoking
mugwort stubby thing on an acupuncture needle to bring
heat deep into the tissues/organs. A bit scary.

and intensive lymphatic draining. The lymphatic draining is not the kind I was formerly used to with my thigh/Gapey. That was very gentle massage of superficial lymph fluids away from the area of congestion. This... this is completely different. It's assertive lymphatic draining... it's done with very strong hands. Upper chest, neck, face, very intense lymphatic draining. It sometimes leaves me momentarily breathless. And finally, he's doing cranio-sacral work on my head/skull bones to help alleviate the headache problem which has gotten really out of hand lately. I'm left drained, physically and mentally, but built-up spiritually.

I've been cutting my prescription medications. By a lot. I am halfway off my sleeping medicines. HALFWAY OFF THEM. And last night was the first night here that I slept heavily, woke once to use the bathroom and fell right back to sleep, and slept straight through until 10:30am. On only half my sleeping medicine that I have been taking for many, many years. He's not giving me any Chinese medicines for sleeping, it's happening naturally. I am also on half my dose of Cymbalta now. It's nothing short of miraculous.

I am connecting with G-d, too, on the level I have been begging for. It's just all happening naturally, organically, easily. And it's only day 3.

The right person/people, the right time.
Yes, it's extremely close to Pesach (Passover), and there is much to be done in my own house. But this year, I am not going to be there for pushing myself with that. My kids are all home, Robert is off from work, and it will get done by them. My whole family gives me their blessings for this time here. It's an awkward time for the Jewish calendar, perhaps, but it's *exactly* the right time for me, of that I'm sure.

I need to go eat because I feel a headache coming on, and I think it's because I haven't eaten since breakfast. After my morning treatment and breakfast, I went on a WALK today. I haven't been on a walk for a walk's sake in at least 7 months, maybe more. I've been in too much pain. Today I walked up a hill, which for me is a big deal... I have been predominantly stationary because of the pain. I went into a cute little park, and sat on a bench and soaked up the sun. Oh My G-d, it was so tremendous. I started crying and crying, in sheer gratitude. I said out loud, thank you Hashem for bringing me to this time. I went on a walk, and sat in the sun. Pain? Yeah, well, it's not magically all gone, but it is less. And changed. We'll find out tonight from my pulses how my body liked that walk. But I now need to eat.
I am re-learning how to eat here, too. What my body needs, and when. Each meal should have 40% protien, 40% [good]carbs, and 20% essential fats. No wheat, no dairy, no sugar. It's GOOD. I hope I can continue this when I get home after the end of next week.

I'll stop for now, but I feel I could write for another six pages on what is going on here.
Thank you G-d, I am starting to believe that I can heal. I am starting to believe that I can have a life with no pain. And without surgery, or drugs. Do you FEEL how tremendous this is? Do you? I'll bet you do.