troubling times

I'm still here.

Not writing much because I have no new news, which can sometimes be OK, but in the middle of a PTSD relapse (which started about two weeks ago, I wrote about it in my last blog entry) it's not so OK. I have been externally mostly functioning, but internally not. That can only go on for so long... especially when I'm not sleeping much. The sleeping problems are a direct reflection of the PTSD.

It's actually come to my attention recently that I probably fall under the category of "complex PTSD", or C-PTSD.
I am seeking help for it. It may be another three weeks before I get an appointment with who I feel can help me the best, but that is 'the system'. Three weeks is good, actually. I spoke to that therapist today, after not receiving an answer to my email I sent about 5 days ago. So I need to go through the process of getting the referral and payment from the HMO, sending it to the therapist's office, etc. But just know I'm not just sitting around letting it eat me away.

I've started the four MRI's that have been ordered-- two by the NY surgeon who may be doing the reconstruction surgery (if I choose to do it), and two by the pain doctor here in Israel to try to diagnose why I was in such pain in my abdomen most of last year. I had the first of the series a few nights ago-- yeah, night. Didn't get into bed finally until almost 1am. It was a very loud, very long one. Loud because they only gave me one set of ear phones, not the foam ones to go under those. It wasn't enough (especially when you're already suffering PTSD). It was like I was in the car with the alarm going off constantly, and a jack-hammer at the sidewalk next to me, and an alien abduction all at the same time. And it was long-- longer than usual (remember, I must have already had at least 30 MRI's in my life, maybe more). It was for neck & spine. In the middle of the test, the machinery stopped, I thought (hoped) we were done. But no, the technician came in to tell me that he's sorry, he needs a small break for a technicality, he'll be back soon. I don't know if he needed the bathroom, or whatever, he said it was a technical problem. All I know is that was at least 10 minutes of me not being able to move my body into any comfortable position without the test going on. I was stuck in the white tube. He came back and all the noise started up again... he said he had to redo the test from the beginning, he's sorry. Annoying. But at least it was without the contrast dye, so I didn't feel sick to my stomach and headachey afterward.

Waiting on results from that.

Fighting another migraine today.... they are happening frequently, but not at the strength that they used to be when Robert would take me to the hospital, vomiting, and nearly blinded. But it's so frequent, it gets me down. I went to a wedding the other night... my first public party in over two years because of being in the years of mourning, first for my mom, then my dad. The wedding was fun, but I had a budding migraine beforehand. I had to decide whether to drug myself up and try to go, or slip into bed and do stronger medications and call it a day. I compromised-- I did mildly strong medications (I was driving), and got gussied up (even put on make-up!) and went. It was a good decision.

But it's hard to get back into the public world after over two years of mourning. I have such mixed feelings about it. I miss my daddy tremendously. Tremendously. This time last year we were sitting shiva for him, in the house I grew up in, which no longer is in the family. Thanksgiving came and went last year, even though I was technically in America, there was nothing to celebrate.

Lately I'm just not feeling well, in general. It's physical as much as emotional. We're experiencing some very trying times with one of our children, and that weighs heavily on me as well. I pray our counselor can help navigate us through what is for me very murky waters. That, together with my physical limitations and constant pain, well, sometimes it all comes together in a not very elegant picture.

Oh, I'll end with this thing that has been sticking in my head this past week, although really not at all contributing to my PTSD thankfully. Just a heavy thing that is on my mind.
Most of you know about the bandage-ripping-off trauma I suffered at the hands of my plastic surgeon when I had the skin graft surgery for NF, right? I'll reprint here for you the CaringBridge post Robert wrote about that immediately after it happened:


Sunday, May 20, 2007 4:04:00 PM


Today's news is very positive, though there's much to talk about. But first just this: Sarah is coming home tomorrow!!! We are so excited and thankful, and also a bit apprehensive. But mostly, we're just thankful: thankful to HaShem, to the Soroka medical staff, and to all the family members and friends who have supported us throughout this ordeal. With that thanks given, I do want to share the ordeal we had just this morning, if only to underscore how even with great progress there is still a lot of hard work and pain ahead. The day started with two instances of classic hospital insensitivity to patient pain, a topic which in my opinion deserves appropriate legislation vis a vis patient rights. This morning the doctors woke Sarah up and removed her donor leg bandages and the debridement wound bandage in order to inspect the progress and teach interns. Unfortunately, they were quite callous, not administering any pain killers after a night of sleeping, and not warning her of the impending intense pain. Just afterwards, Sarah called me in pain and in a desperate mood, and I got out as fast as one can with a toddler and baby to feed and dress (and bathe after a diaper blowout!) and drop off at their respective child carers. When I got there, Sarah was still in a lot of discomfort, but after about half an hour, she was ready to eat a little, take her antibiotics, and then shower before having her staples (used to reinforce the grafted skin) removed. We were worried about that procedure, but the attending nurse did an excellent job, patiently and caringly extracting some 89 staples in about 15 minutes. Only a handful caused pain (Sarah is mostly numb there as most of the nerves have been cut), and even that pain, though strong, passed within 10 seconds. Now it was time to put on the new dressings. Unfortunately, the aforementioned callous doctors left the donor leg with the bandages strewn across the wound, and so they got stuck, making it impossible for Sarah to stand up without acute pain from the pull of the dangling bandages. She eventually managed to get up briefly and transfer to a wheelchair, and thusly was she showered. That went OK. But then nobody warned her that the first dressing change for the donor leg burns for about 30 minutes like "a blow torch being waved up and down" the length of the wound, as Sarah described it. Narcotics take about that long to kick in, so the Percocet she then received on request couldn't rescue her from the intense suffering she had to endure. Why isn't there a standard procedure in the plastic surgery ward to administer a narcotic 30 minutes before bandage changes, just like in Surgical Ward A at the same hospital?? I posed this question, perhaps a bit more diplomatically, to Sarah's surgeon, and he shrugged in a "hmmm, that's not a half-bad idea" kind of way. Hopefully they'll institute that policy in the future. Anyway, Sarah's is doing much better now, and after a visit from an acquaintance who also got necrotizing fasciitis after a hernia surgery at Soroka (in 1994/different surgeon), has overcome her apprehension about coping at home. The 1994 NF victim lost all of his lower stomach muscles and part of his lower chest, was hospitalized for a longer period, and then on top of all that contracted bacterial meningitis, damaging his right hemisphere and leaving him with left-side paralysis. After 3 months in Soroka, and 6 months in the Loewenstein Rehabilitation Hospital in Raanana, he recovered full use of his left side, and is active and healthy today. Sarah learned a lot from this story, and especially that she's fortunate to have not had more damage, and that she should mimimize her risk of infection by coming home tomorrow, even if it means not having nurses and doctors on-call around the clock. And then there's Hilary, Sarah's midwife-nurse friend, who'll be helping us with checking and dressing the wounds. So we'll be fine. G-d willing, tomorrow I'll post a description of Sarah's homecoming!!! L'hitra'ot, Robert


It turned into a huge trauma that I had to work on (Shuli, you helped me through that with EMDR! Do you remember?). Having that bandage ripped off, the whole scene and details around it were very, very traumatic. I hated the plastic surgeon for that.

So, this weekend, my friend Hedva told me something very shocking that happened in July with him, and I hadn't heard of it. Here that is: https://www.timesofisrael.com/senior-plastic-surgeon-kills-himself-in-soroka-operating-room/

That was my surgeon... so, maybe he wasn't playing with a full deck the whole time?
I feel bad for his wife and two kids.

There but for the grace of G-d go I.