New Normal- Purim 2019

Well, I'm not sure if it's a "new normal" forever, but what is ever forever anyway?

I have to believe that the CPTSD will chill out in time. But not quick time. We're talking years here. So yeah, new normal is about where I'm at. Months at the day center at the hospital which I've been doing, and years thereafter in individual therapy, focused on the CPTSD. Fun times. But I feel that an unimaginable life is there for me when I can dig myself out of this. I picture it without pain, illness (well, unlike the illness *I've* seen, anyway) , migraines, and enjoying my kids (& grand kids?????????? No, nothing on the horizon, but a mother can dream, can't she?). I try to hold onto that picture when things get bad.

Thing is, when things get bad, they get so bad that I can't see through to that other picture. All I can see is the trees, not the forest. Never ending darkness. And I see it a lot.

I had no idea how I was going to make it through the Jewish holiday of Purim this year. Every year it's hard for me- it's notoriously loud and boisterous, people in costumes, children over excited, and a general loud fest night and day. Every year it is a struggle for me. But this year, I knew it'd be impossible. But I'm still a religious Jew, and I feel bound to the laws and traditions of my people. That means that I have to hear the Megillah (the book of Esther), read from an original scroll (animal skin parchment). But there are many ways to do this. I chose the quietest way possible, and it's not at my shul....

A friend was in the hospital, healing after having had surgery. I knew that there are people (usually from Chabad) who go around all the wards in the hospital and read the Megillah to the patients, because they cannot get out to hear it somewhere else. So, I went to her. I had wanted to visit with her anyway, and here was a perfect opportunity. She didn't have to be alone for Purim, and I can have a quiet experience with my friend. It was perfect for me.

The next day is also a huge to-do with Purim. Lots and lots of activities, sugar overloaded kids, a large festive meal with the whole community, costumes, and much more noise. My noise sensitivity is really activated these days/weeks/months. It's part of the PTSD, and it's very hard to deal with. I could not have ANY of that. Just too much sensory overload, from start to finish. In all previous years I've done it. But this year, I knew I couldn't do it in any way, shape, or form. Problem is, what do I do with that day? It also has a few laws and traditions that I wanted to abide by.

So what did I do? I was recently inspired (the night beforehand, which I was actually suicidal, and this counselor helped me down from the ledge, so to speak but that's for another blog) by my previous counselor to go on a hike into the forest. So that is exactly what I did! I put on my 30 year old hiking boots, the same ones which had taken me through the Swiss and Austrian Alps in the winter of 1990, and up Massada in the summer of 1994, and also that I had lent out for someone's use once. Thirty year old hiking boots with stories to tell. Perfect. They still fit as they always had, and I was so happy.

I packed a modest meal, because one of the laws of Purim is to eat a festive meal in honor of the miracles that happened to the Jews. Packed up another few things, and went on my way! I happened to be wearing my Brekenridge Colorado sweatshirt, where I was last summer with my on-line mom's group, so I was inspired.

I got to Yar Lahav, a forest about a 20 minute car ride away from my house.
Immediately I had to get passed a bunch of Beduins (Arabs) that felt a bit threatening. Especially one, who had started to follow me because he was shepherding sheep and goats that I had just photographed. He was following me yelling "Allo! Come back! What did you do!" (in Hebrew).

I threw him off my path thankfully. I know people get killed that way-- a Jewish girl was just murdered by a terrorist in the Jerusalem forest a few weeks ago just for hiking alone. I was scared, but I looked straight ahead and walked fast.

After I lost him, I was on my own. (But I looked around me a lot, didn't feel 100% safe, but most of the time I could ignore that feeling. You learn to live with it).

I hiked around for about 3 hours before something horrible happened....... my 30 year hiking boots fell apart! The soles fell right off them! First just the left shoe, and I tried to tie it on with a plastic bag, but that didn't hold at all. Then, about 20 minutes later as I was going on a downhill angle, the right sole came flopping off too. Ack! I was only walking on the soft leather bottoms at that point, and I had at least three kilometers to get back to the car! I tried to find soft places to walk, but suffice it to say it was an impediment. (no pun intended! :)

PS- don't have faith in 30 year old hiking boots!

At that point I was near a beautiful scenic overlook, so I decided to have my meal.

beautiful clear day-- my view from my picnic rock.

 I sat on a rock, took out my canned Mackerel, olives, artichokes in vinaigrette, and home-made sauerkraut, and fork that was broken (from the fall I had when my shoe broke.... I got a little banged up, too, but really just small collateral damage.) I really enjoyed that meal! I said my prayers over the food in the merit of queen Esther who saved the existence of the Jewish people on Purim way back when in Persia. It was awesome, honestly. Gratitude overflows for that meal.

Then I began my sole-less hike back to the car. But I didn't really know which direction it was! But, unlike in 1990 when I was in the snow covered Austrian alps with no trail maps and the sun was going down, this time I had my GPS. I had recorded the coordinates of where I parked the car, so I just set up WAZE to take me to those coordinates. Smart, I am sometimes. It took a little over an hour to get back, but boy were my feet sore by the end! And I was grateful to see the shepherd and his flocks gone, and three Israeli army soldiers with their guns were having a picnic pretty near my car. All was well.

I sat in my car with the seat relaxed back for a while, catching my breath, and I think I took a little 15 minute nap. It was a perfect day, in my eyes.

That night we went out to dinner with a guy Robert works for, his wife, and two of his English (British, that is) friends. It was great, but somehow, even though I was really careful, I woke up with a migraine the next day. I don't think I had anything with gluten in it, but my gin & tonic might have done it. I read later that gin has wheat in it and people who are gluten intolerant shouldn't drink gin. Ah well, one less drink allowed to me. I'll have to stick to whiskey and rum. :)

So that was my Purim, and I am grateful, overall, at the possibilities Hashem showed me when I knew I couldn't do the "regular" Purim we usually do.

I'll end here, even though I have a story about trying to go to a wedding last night.... it's hard. The loud music, crowds, and in this case the strobe lights also made me insane, we had to leave early. OK, that's just what it's like living with Sarah. Oh yes, and at one point a huge flashback had me in tears as the chuppah (wedding canopy/ceremony) was going on. Thank you, JG, Robert, some shots of whiskey, and my pills which helped that blow over. But anyway we couldn't stay long-- those strobe lights were very bad for me.

That's life. It's going to keep being this hard for some time.
But like I said in the introduction, on a good day, I can have hope for the future. Just don't catch me on a bad day.

beautiful daisies abounded everywhere

Lots and lots of wild flowers were everywhere! The recent rains helped those a lot!

define luxury...

It's tiring having a "job" to get up for and do every day. How do y'all do it? :)

I haven't had a schedule in so many years, getting used to going to the day program every day is tiring me out. It's also pretty heavy work, emotionally, so that also factors into it.

It's very interesting. I mean, this is it. This is what I've needed for many, many years. Almost all my life. It took a crisis to get here, but doesn't it usually happen that way? At least with trauma it does. I have tried other trauma therapies before, to a lesser or greater success, but this, what I am doing at the day center at the psych hospital, this is the road I need.

We are still in early stages, of course. We are deciding what and how to proceed. It has to be handled right. It's like needing a root canal on an infected tooth; you have to take down the infection carefully first, then proceed gently to do the root canal. This trauma that has been stuck inside me for most of my life wants to come out, but if it's not done right, if it's not unpacked properly, I'll be left with more of a mess in my soul then there was beforehand. I need to learn tools of how to deal with it. How to deal with the flashbacks I get very regularly these days, how to deal with the hard, hard feelings that surround the trauma, and basically I have to learn how to keep myself safe before we go unpacking anything. That process began when I went into the ward at the psych hospital over a month ago, just with figuring out what medicines will get me to sleep safely, and keep me from freaking out during the day (dealing with flashbacks is not for sissies).

I am now sleeping well every night, Thank The Good Lord!! It's truly amazing. The medicines I am on are not addictive, and I can take less or more according to timing, and how I feel. It is really a miracle for me to be sleeping well. For such a long time I didn't have that. And I have the hope that it won't be forever; that these medicines can be cut out of my life when I feel I'm ready. But I'm nowhere near ready now. It's good the way it is.

The psychiatrist at the day center wants to switch the type of Cannabis I have been using (which I haven't used much, because, miraculously, my migraines have *drastically* gone down). She wants me to be regulated with a different type, one that will calm the nervous system but not stone me. The one I have now stones me, but works for pain. This is part of the "laying the groundwork" for my work in CPTSD (Complex Post Traumatic Stress disorder). It is a safety measure of sorts. It will help me stay calm and continue living sanely in the world when I open up and dump out that Pandora's box which was sealed tight for so long. At the moment, I start tearing up immediately as soon as we approach anything to do with that trauma. So, it's all a process. I have to get the new type of Cannabis, try it out, go slowly with the therapy (which is twice a week).

I am still working with my counselor who I was working with before any of this started. He's the one who Robert & I started seeing last year in the middle of my abdominal pain crisis. With all the meetings we've done with him with various members of our family, or just Robert & I many times, at this point the work with him is pretty much just me & him, also twice a week. The day center isn't so happy that I have an outside psychotherapist, but I've told them I do not agree to cut him out of my life. I trust him completely, and have a good thing going together with him with the therapy. I can't be expected to automatically trust whoever they give me, and lay it all out there in a new setting. So for now, until I feel the need to change (if I'll feel that), he's still in the picture, too. The day program is only for three or four months, then I'll go on to either this organization called Inbal (free therapy for women sexual abuse survivors, but again, another new person), or just keep going with this counselor-psychotherapist- who I have known for quite some time and have excellent trust with.

Point is... it's getting worked on. It's a relief, even though I'm not even into the process yet, it's a relief that I am not suffering from keeping it all inside anymore. I really wonder if my migraines were attached to this trauma. Since I went into the psych hospital, I've had ONE (count them- one) semi-bad migraine. That's IT. Down from two to three a week. Of course, I've drastically changed my diet as well, so it could also have been the gluten, the dairy, or the night-shade vegetables that were giving me the migraines.

I finally feel like I am getting to a stage in my life where I'll move... out of health problems and...well... away from the inability to move on. Not that the health problems have disappeared, I still have some important decisions to make about the reconstruction surgery, and a few other issues, but I don't feel that I'm stuck anymore. I didn't even realize how stuck I felt, until I realize how *this* feels. And my chronic pain is way down. If you remember where I was at this time last year, I was a wreck, with the horrendous abdominal pain, and deep, deep depression. I also haven't written my book in about a year. Now, I feel ready to start up again. I think I was stuck with my writing the book because I was stuck with the trauma. It is integrally related to my NF experiences, I just couldn't write about it. Now, somehow, I feel I can start writing around the trauma from childhood, saying enough so readers will understand, but without unnecessary (and possibly triggering) details.

And I am talking with my therapists about my horn playing too. That's also been stuck. My hope is that it won't stay stuck. I have to work on my perfectionism with the horn playing, and to go easier on myself, and maybe, just maybe, me & my horn can reach a compromise. I'm dying to play again. They are so supportive at the day clinic, I think I will get there. I am amazed at how life feels with this level of support; it's really kind of a luxury. For me it came from a hard crisis, and it's necessary, but from a sideline point-of-view, it's a luxury that I have this much support to work on these issues finally.

The Hebrew prayer for someone to have their health restored to them includes blessing them with healing for their body, and healing for their soul. The two components are on the same level. I've had tremendous challenges for my body to be healthy for the past 11 years, and now, by some miracle (and well-placed steroid shots) those challenges are quite a bit fewer, thank G-d. Now it's time to work on my soul healing. And I'm so grateful for this time. I'm grateful to be given the open opportunity to heal my old wounds, old traumas, which are still very much alive in me. The people in my group at the hospital are all dealing with PTSD from different things. I'm connecting with a few of the girls. I'm the second to oldest person in the group, most are quite a bit younger, unmarried. A soldier with very hard PTSD from his army time, other men who I haven't spoken to yet, but I mostly stick with the girls.

We are doing art therapy, yoga & movement, nutrition, music therapy, and a few others.
It's a very special program with some very caring people. I pray I'm off to a good start. Where this will lead me, only G-d knows. But it's a gift. A precious gift, born out of desperation and much hardship.

I don't know when the tide will turn, when I start doing the real work on the CPTSD and the traumas themselves, if I'll still feel so grateful, but hopefully that will be fleeting and dealt with properly, and I will come out healthier than I ever was before. Please G-d.

Day 26 of healing the soul, nearing the end.

Of course, the title only refers to the time I've been in the psychiatric hospital. Healing the soul will continue when I'm out of here. I've been here to relearn how to sleep, and have a break from my regular life...because things were kind of falling apart. That's what happens when you don't sleep for a few months. I'm much better now, thank G-d. I am sleeping consistently, with pharmaceuticals, yes, but non-addictive ones. I am also taking something that basically keeps my nervous system at a low hum throughout the day so that I can sleep at night. That, I hope to drop out slowly as time goes on, but for now it is working. My blood pressure seems to remain sort of high, and I'm not happy with that, but the docs here don't see it as high. I do, because I know what normal for me should be. It's going to take a while to get into my own groove.

I hope to get a release either today or tomorrow. I've spent two Shabbats out of the hospital (this passed one was wonderful and simple, and very restful, with my dear friends), and one whole afternoon at home, yesterday. My doctor here says she feels there is not more that they can do for me here, my medicines are balanced out, and I am sleeping. The big work will be after I get out.

It is looking like that organization I was hoping to work with upon release from here doesn't have a therapist available for me until a few months from now. I obviously don't want to leave without support, so my doctor has recommended me for a day program here at the hospital. It is also for women who need to recover from sexual abuse, and it is all encompassing as far as group sessions, individual therapy, art therapy, and medical doctors overseeing each patient along the way. It is actually much more encompassing than I would get from the other organization (called "Inbal"), which is only one therapeutic hour (50 mins) of therapy a week, and the rest you're on your own.
The day program here is from 8-1, so I'll be home afternoons and evenings, which is wonderful (especially after having been gone for so long now). I'm not sure how many days a week it is, but I'd be willing to do 5 days a week if that's what it is. The "hard work" has to be done. Pandora's box had it's lid blown off, and it can no longer go back on. It's not going to be easy. But it's time.

Yesterday I was happy to report to my therapist (and also my husband) that I hadn't had a nightmare in 10 days. That is a record since this relapse began. But I shouldn't have said anything... had a big bad one last night, nearly woke up the whole ward. :(

But soon I will get back to my home and my family. I have greatly missed them, especially Robert.
I will get back to my Tai Chi, back to the gym, and try to regain some semblance of normalcy.

Oh, and I still need another MRI. ...Ya.
And my right rib and center of spinal cord consistently hurt, no matter day or night or anything. Gotta get that looked into.
And the million other things that need to get done that I haven't been able to take care of because I'm here.
I'm not sure what state of mind doing this day program will leave me in. I hope I can be productive. But I am ready to accept whatever will be. No choice.

One thing I am looking forward to is drinking my tea in my own cup, not a purple plastic cup anymore.

And having my own bathroom again.
And my deliciously comfy bed.
And my children. There is going to be some hardship there, I've been gone for a long time. I pray we all have patience and understanding for each other.

And my husband, who is so tired, but still so emotionally strong for me.

Please Hashem, keep Robert healthy and strong of body and spirit, and please give my children the depth of understanding and resilience they need to grow up in their own specific circumstances.

Week three of healing the soul

Day 20, still in the Mental Health Center which Heals the Soul.
I'd rather not be here anymore, but...it's complicated.

Oh, and yeah, happy new calendar year. In my wildest dreams I could never have thought that I'd spend a New Year's eve in a psych hospital. Or ever, for that matter.

My sleeping is still not under control. Sometimes they give me enough medicine to put an elephant to sleep, and it doesn't work. My brain is just wired in a certain way, I guess. I think one of the medicines they are giving me is in the same family of medicines (Benzodiazapine) of what I weaned off of when I first came here, and my body has built a resistance to it, so it's not worth giving to me. The other one they give me, sometimes works and sometimes doesn't (and is not addictive), but if I take more than a certain dose, I get horrible restless leg syndrome. So I need that in a low dose, and it's not completely effective.

I was home last Shabbat, and that was wonderful...until it wasn't. Shabbat (Saturday) afternoon I started to feel that shakiness that happened about four weeks ago (written about here). It was subtle, so I didn't think much of it. But as the afternoon progressed, the shaking got worse and worse. It felt like Seratonin Syndrome again. The week beforehand they had doubled one of my medicines (an SSRI) without having an in-between dose... just doubled it. It was too much for my system, I now know that it's like my body can't take a certain amount of toxicity. That's why I have developed so many allergies to so many antibiotics. I had them pumped into my body too often.

So, Instead of staying at home overnight Saturday night like I was supposed to, I had to come right back to the hospital when Shabbat was over. I came in shaking like a leaf, extremely high blood pressure, and confusion. It took **hours** before the on-call doctor came to see me. All those hours they didn't give my any antidote to help with the symptoms. Then when the doctor did come on, he said to me that I am having a panic attack, not Seratonin Syndrome. I told him I never get panic attacks. Of all the things I do deal with, panic attacks are not in the repertoire. This is an issue of toxicity of too much SSRI dumped into my system too quickly. But the doctor didn't agree. He knew better. In fact, he knew SO much better than anyone, he made a point to tell us that he is the most knowledgeable doctor of psychiatric medicines in the entire South of Israel. (I wanted to say, after I rolled my eyes, how can you fit into your doorway with that ego?)

Whatever, call it purple unicorn syndrome, just give me something to stop the shaking-- whether it's a panic attack or Seratonin syndrome, it's the same treatment- Clonex. This had been going on for five hours, I was truly suffering. Finally I got the Clonex.

I had a very hard time falling asleep that night, even with the medicines, my system was just too high strung.

So now we are heading into another Wednesday... I came in on a Wednesday, so tomorrow marks three weeks. And, for various reasons in which I was included in the decision, I'll be here probably until early next week.

It is very, very hard. Yesterday I got terribly lonely, it just happened to be that nobody visited that day. I had been getting steady visitors, but yesterday I had a difficult therapy session, and no visitors. Today was better...slept pretty OK (7 hours straight), my daughter came to visit right from school, and another friend visited also.

The main bulk of real therapy can only begin when I'm out of here, though. They have hooked me up with an organization that exists with licensed, trained therapists, here in Be'er Sheva, for free, who deal specifically with women who need to recover from sexual abuse, no matter when it was (or is) in their life. It's been there all this time, and I never knew. I could really have used that place before my PTSD got to this proportion. But, as we know, things come to us at the right time, and they come from G-d. There is of course a waiting list to have a therapist assigned to you, but I can't even be considered for the program until I am out of here. They sent a social worker here specifically for me, and we talked a lot. That social worker submitted my paperwork to get my name in the system and get it going. I don't know when they will call me for the initial interview, though.

I've had a lot of time to think, read, and just chill out. I haven't had to cook or clean, or drive anyone anywhere, or worry about other people's scheduling. I feel unprepared to go back to resuming all that stuff, but it'll have to happen, slowly. (and I need to get back to the gym!)
As much as I wish I didn't have to be here, I'm glad a place like this exists. It's a safe place to recover and to have a time-out for mental health reasons. It comes with it's problems like everywhere else, but I do feel safe here, and I feel cared for. I don't know what toll it's taken on my family, though. That is in my near future to deal with.

Eleven years of this Sarah... the one who really can't work at the jobs she loves and strived so hard to attain. That Sarah from before NF isn't coming back. But maybe I can do other things.
I pray my family maintains their mental and emotional health while I've lost mine, already a few times. I constantly worry about the kids and their own special needs.

It's not what I planned.

It's what Hashem planned.

I don't understand it. And I am sad, often, because of it.

But in the end, I love my husband with all my heart, and my kids are the most amazing souls to walk this earth, may Hashem always protect them.
And for that I am eternally grateful.

Ten Years later... here I am again.

After reading my last post, you now know that I still didn't have medicine to take care of helping me sleep, in light of the PTSD relapse. That one I tried wasn't good for me at all. obviously.
So I was left again without sleeping properly. Or at all. Many nights in a row.

This is a problem. I tried everything... meditation courses in my  headphones, music, stories (audio-books), podcasts, even boring history podcasts to try to get myself distracted and to sleep.

Those didn't usually work. I gotta say I also turned to my box of medicines, taking some of the stronger stuff to try to put myself to sleep. That became my modus operendus. I took more than regular doses, and mixed all kinds of stuff that was probably not supposed to be mixed.

One night, Dec 12th, was a night not unlike recent others. But I lost track of what I had taken to fall asleep. Whatever I had taken, it didn't work, so I took something else. You probably can see where this is going...
At around 3am, I went to use the bathroom, and I didn't feel well at all. I stopped between our bed and the bathroom because I felt I was going to faint. I said out Robert's name (who sleeps very deeply, bless him), and then I went down.

He couldn't wake me, so he called the ambulance. They also couldn't wake me for around 25 minutes. But I did wake up myself. Confused with all the paramedics around me. It was so scary.

I chose not to go with them into the hospital. I felt OK, and hate the hospital. I had taken an accidental overdose, and I just wanted to be in my own bed.

The next day, though, I spoke to my family doctor, and she strongly encouraged me to go to the hospital. I reminded her I have a psychiatry appointment with the head of the PTSD department on Sunday, and she basically said she is worried I may not make it to Sunday at this rate. That convinced me.

I voluntarily checked myself in to the psychiatric hospital, same ward I was in in 2008 for three weeks. It's a place where they can help get my medicine issues straightened out, and help me with my PTSD. They have patience here, I can stay, and I can leave when I feel I'm ready. I can't say I'm happy about it, but I can say I need it. I don't want to need it though.

They've [obviously] changed my sleeping medicines (they weren't working for a long time already), and although the first night here I didn't sleep, the second night I did. And pretty much each night since, I've gotten a pretty good night's sleep. I'm also able to nap afternoons now, which I could never do before. I know it's the medicines, but that's what they are there for. My nervous system is being calmed down, and things are quieter. Shabbat here was very quiet; for the good, but also it made it lonely sometimes.

I think one of the main things that is at the root of all the depression is that I still feel so lost in the world without my music playing, and without my doula work. Don't just say "so start up again, do something about it"... it's not as simple as all that. I'm not in that space anymore, my body (and soul) cannot hold up to that world anymore.

My world is to take care of my children & my husband and household, but I am not doing any of that very well. I feel so empty and unable. One of my children needs direction, needs so much, it's so much pressure on me because I'm not able to give much. So I'm at the hospital, taking time for myself and healing, but the situation at home won't change. My children need me, and in all this time since I had NF, I don't think I've ever given them what they needed from me.And one of them holds it against me. I want so much to help[  him, but he's so angry at me. At the world.

Why can't I pick up and move on? Why do I sink into quicksand the minute I wake up?
I can do so much, be so strong, have so much potential.
But somehow that I don't understand, it got taken away from me. I let it get taken away from me.
I don't understand.
I'm sinking. I'm sick of asking for someone to throw me a rope.

The sh*t hit the fan

So much has gone on since the last post, it feels like dropping a bomb here to write about it. But write about it I will.

So that week after all the MRI's?
HUGE migraine on Shabbat. Was it from all the contrast agent? Could be. I am so sensitive to everything. That will be a theme here in this post....
Since I didn't have any medicinal cannabis baked into [gluten free] brownies or cookies, and I can't smoke it on Shabbat, I was out of resources beyond the over-the-counter stuff which is useless most of the time. By the time Shabbat was over, I was in **baaad** shape. We wound up in the hospital around 10 pm, after I was vomiting and could hardly see. I hadn't had a bad one like that in a very long time. Mostly because I can use the Cannabis and it usually helps. I got the steroids and Phenergan, and went home with a low-grade headache and very drowsy. Sunday I stayed in bed still nursing the remnants of the headache, like usual.

Monday I was well enough to travel the three hours up to Dov's yeshiva for his parent's evening/Chanukah celebration, and bring him home with us afterward for his vacation. It was lovely, and I was exhausted the next day, but it's good I could go. Last year at the parent's day at his yeshiva, I couldn't go, I was in far too much pain. His rabbanim were so happy to finally meet me, and I, them.

Tuesday I decided to start my migraine medicine again (Topamax). The headaches have been coming on more frequent and harder, and although I want to stay off medicines, I also want to stay out of pain. Call it self preservation. My family doctor OK'd it, but I didn't check the dosage she recommended. I had some Topamax left over from last year when I stopped it (to see if it might be a factor in my abdominal pain, which it wasn't), so I just found that bottle and started it. 50 mg, Tuesday, 50mg Wed.

On Tuesday night we had dinner with dear friends in the neighborhood. Then we watched a movie. My head was cotton-feeling, kind of dizzy, just not at all right. I thought maybe it was the new sleeping medicine I had just started.

So that new sleeping medicine-- I mentioned last time that I asked my doctor for something because the PTSD relapse has been keeping me from a good night's sleep... or sleep at all sometimes. Nightmares wake Robert up with me screaming, then he wakes me up, and then I'm up, freaked out, with nobody to process the dream with because Robert goes right back to sleep (rightfully so). So I don't get back to sleep. It happened so much that my driving was getting sloppy, and I even took off the mirror from our new van in miscalculating distance. So that was why I asked for a stronger sleeping medicine.

Although I had never heard of it, I didn't Google it, I just took it, and it gave me a wonderful night's sleep, no nightmares, the first night I took it. I was thrilled. I kept it up for a week or so, then the nightmares started returning, and therefore my wakefulness, so I took the whole pill instead of half, as per doctor's instructions.

Well, Wednesday found me early in the day in a cotton-headed strongly dizzy feeling. I needed to do an errand in Tel Aviv, so I took the train because I didn't trust my driving. I went to Tel Aviv, and got increasingly more and more depressed, even crying, alone there on the city bus on my way to where I was going. I didn't understand what was going on. People were looking at me concerned, but I tried to keep my head turned away. I did my errand, and got right back on a city bus to come home, I was in an awful state inside my head-- I felt physically awful, was moving very slowly but using a very high energy output, and my head just wasn't right. By the time I was on the train back, I started to feel a tremor coming on in my hands and legs. I thought I was cold. I was also still crying.

I got home and deteriorated rapidly.
It was Shifra's 16th birthday (!), and we were going to go out for dinner, but I couldn't do it. I thought I needed dinner immediately. I didn't eat anything my whole day traveling, and I thought I was shaking because of that. Robert kindly made me some dinner, and as I was eating, the rest of the family went out to dinner to celebrate Shifra's birthday. You *know* I had to have been feeling really bad to forgo that.

As I stayed home, I got right into bed. Things were NOT RIGHT. I started shaking uncontrollably, and crying uncontrollably. It was so unexplainable to me. I was literally having convulsions. I didn't want to get Robert back home because I didn't want to bring down Shifra's party, but I did get my doctor on a chat with me. She was kind enough to go through it with me, and try to figure out what is happening. Honestly, I thought I was having a psychotic break. I had really crazy thoughts going through my head. I was  s c a r e d. After a while in our chat, my doctor asked me to tell her everything I'd taken in the last 36-48 hours. In a shaky voice with disorganized thoughts, I left a voice note for her about what I had taken, including the new sleeping medicine at the higher dose, and the Topamax and the dose. We discovered the dose of the Topamax I started was too high (totally my mistake). Then I discovered that I had a bit of a temperature. My doctor then thought another direction, Seratonin Syndrome. Bingo. The new sleeping medicine (Trazodil) was not a good mix with the only medicine I was taking beforehand, Cymbalta. In fact, very bad combination. Potentially deadly.

Finally Robert came home and he spoke with my doctor when he saw my condition (shaking, convulsing, crying uncontrollably). We had gone through a list of what medicines do I have at home, and hit upon one that could act as an antidote. I wanted desperately to stay out of the hospital, that's not news to any of you here. So I took a Clonex, and within 20 minutes the shaking calmed down, and I could rest. A few hours later I took another Clonex to help me get to sleep, together with my regular sleeping medicine (*not* the new one) and I slept all night.

But when I woke up, as soon as I started to brush my teeth in the morning, the shaking started again. It was so scary all over again. I didn't know how long these effects would last. I took another Clonex, and it calmed my nervous system down. By this time I had of course cut out the Trazadone as well as the Topamax. I don't know if I'll go back on Topamax or not (starting at the right dose), I have to clean out my system from this huge crash that happened. Today is Sunday, and I am now no longer getting the shakes (thank G-d), but I've had a four day lingering headache through this whole thing. Low level, but persistent. I can't take Tylenol/Excedrin, all the over-the-counter things- it gets me into medicine overuse syndrome. Been there before- constant migraine.

Basically we know I am wildly sensitive to ALL drugs and medicines. I hope to stay as far away from them as possible. I need to get this PTSD problem under control. I finally have an appointment with the psychiatrist (who I saw 10 years ago at the psych hospitalization) in a week. He is a PTSD specialist, and head of the PTSD department. I'm praying he can lead me out of this. It's really the source of how all this started... the relapse, the sleeping problems and nightmares, needing more sleeping meds, getting increasing migraines.... it's all connected. Let's pray I can get this straightened out.

There are still other "fires" I have to put out and can't even get to them because of these more immediate "fires". More on those another time.

Aside from this horrendous stuff, there have been good Chanukah times with the family, Baruch Hashem. I was hoping for more, but taking into account the circumstances, I think we did pretty well. We went to an escape room today, escaped from a nuclear apocalypse. :) Then out to a beautiful dinner, the whole family together, and our wonderful nephew (my children's cousin) Noad joined us, also!
We had dinner with friends one night, and Robert & I saw a movie together in bed one night. That is also a rarity.

Only Dov, I think, knows about the shaking and convulsions.... he took me to the doctor the second day it was happening. We managed to shield the other kids from the harsh reality of what was happening to me. That's a score, considering how much they've been through regarding worrying about me. Going to the hospital for the migraine last Saturday night was hard on them.

I'm still withdrawing from the medicine mix-up, but I hope it'll get better and better within a week or so. It's been a pretty insane time, though. I'm afraid to take anything new.

Mostly, I have to get the PTSD under control. Then I can deal with my other issues. Everything at the right time.

Let's pray I can sleep tonight. Last night was pretty awful.

Three MRI's and a funeral

(...oh, and a memorial gathering at my house for my dear friend Sabrina, may her memory be blessed. But that made the title too long)

It has been a crazy week.

One MRI (brain) was at night after a funeral I attended of a friend and wonderful member of our community. She was only 67... cancer is evil. She was a dynamic, friendly outgoing woman who I was quite friendly with, and she also taught my youngest son English on a US level when he was in second grade (Israeli schools don't teach English until 4th grade). Her nieces and nephews came in from the US for her funeral, that's how special she was.

Funerals take a lot out of me, but are so vitally important to the soul. That of the departed as well as that of the people who cared about the departed. All-n-all, though, yeah. I'd rather attend a birth.

The MRI that night was a brain one. Of all the MIR's I've had (and that's a LOT), I never had a brain MRI. I've had brain CT's when my migraines got bad, or switching neurologists, but not an MRI. This one was for the pain doctor in Ichilov hospital who is trying to find a diagnosis for my abdominal pain crisis that happened last year, which [mostly] went away when I got the steroid shots. He said redoing the shots is fine, he can do that any time I need. But he feels we are missing a diagnosis. I'm not sure. We'll see. He ordered brain, spine and neck MRI's, and those are all done now.

The brain MRI is really hard because the noise is at your head. I always had abdominal and hip/thigh MRI's, and *those* are also loud, but the brain one is, well, at your HEAD. The ear phones they give you weren't enough for me. Too much jack-hammering, alien abduction, car alarm and machine gun sounds in my head. Not good for the PTSD. Not to mention the cage over my face... if I opened my eyes I immediately got claustrophobic. Glad it's over. No results yet.

The Ichilov pain doctor also ordered a nasty looking test called EMG/NCS of upper AND lower extremities. That test is not passive at all... electrodes and needles testing muscles-- FULL BODY. I'm not enthusiastic to do that. But I guess I will. Definitely bringing somebody with me for that day.

Then yesterday was very busy... it was Sabrina's (z"l) second year memorial. I was on my feet all day, literally. Only stopped when the actual ceremony started, in my house, that evening, with about 10 other people joining us. Then I sat a bit, but I was really wiped out. I spent important time at the cemetery (for my second day in a row) with Sabrina's daughter and her whole foster family, visiting her grave and cleaning it, being with everyone (especially Tessa, who I miss terribly, but is doing very well, thank G-d), standing, walking a lot. Then down town to get the memorial gathering foods together... along with a few errands I had to do (walked a lot then, too-- couldn't find close parking even with the handicapped parking tag). Food shopping (which I don't usually do, it's very taxing), coming home to prepare. I'm happy to do it, but it was quite a hard day. That's life.

We had a lot of sushi and beer because that was one of the things Sabrina and I did often- either go out for sushi and beer or order to her apartment sushi (and drink beer). I thought she'd smile on my decision. Made me happy. But you know, cleaning the kitchen, arranging everything, I was just non-stop on my feet. Every time I thought I could take a rest another thing popped into my mind to organize and prepare. Thank G-d everything turned out fine, and Sabrina's daughter had a wonderful time playing Barbies with Shifra. (my daughter, who's almost 16, had lots of fun too... this was *not* charity work to play Barbies with Tessa!! We heard their giggles and banter in the living room!)

By the time I cleaned up and got myself into bed, it was midnight. My legs were nearly numb, hips throbbing.

But I forgot to say something important, --but I want to ignore it-- but I can't...

Last night is the second time since I got the steroid shots that I felt that same abdominal pain return. The first time was Yom Kippur, in September, also when I was on my feet all day (and helped a mommy with a nursing newborn long into the night). Then it didn't come back until last night, at about 11pm while I was standing at the sink washing dishes... I felt it. It's like a demon feeling when it comes. I think I have to be careful about being on my feet too long. It goes away when I rest.

But I don't want to have to be careful, you know? 

But it's there, lurking. I guess it's a good idea to try to see if there's a diagnosis, but I'm not convinced there will be. And again- doing that nasty nerve test is involved. Weh.

But wait, not done yet-- I said three MRI's and a funeral, right?

So not only did I get to sleep over exhausted, in pain, and late last night (with thoughts of Sabrina & Tessa swimming around in my head), but I got up at 6:15 this morning to head to Jerusalem for my two MRI's that the New York surgeon wants to see in order to know if he can do the reconstruction or not. I've had the referral for these MRI's (abdomen & thigh- the whole area of NF's path of destruction) since August, and because of the  special directions the surgeon gave, no hospitals in Israel wanted/could do it for me. He wanted 1mm picture cuts the whole NF area (large area).

So when we got stuck in traffic on our way to Jerusalem this morning and I called the hospital to inform them, the secretary was snippy with me. She told me that I must be early (as if traffic is in my control) because the doctors/ technicians don't understand my MRI order.

Excuse me? You've had my referral in your hands for over a month... the HMO just told me *yesterday* that they will pay for it, so I didn't know if I'd be coming today, but the hospital had my referral for a long time, and sent me a date for the test. *Now* you're telling me that the directions from my New York doctor are complicated?

We got there, a bit late, then the guy who puts in the IV took a LONG time to get a good vein and set me up. (pet peeve- being a full-time patient makes your veins bad- must have EXPERT phlebotomists!!). Then comes the doctor and the technician. They're telling me about the MRI machine's capabilities, this is impossible, we can't do 1mm cuts, that's only done for brain MRI's and this area is so much bigger than a brain. I said maybe program the machine to do what it can do for a brain and aim it where we need? No, I don't know what I'm talking about (true, but sometimes not knowing things helps one think out-of-the-box), this is impossible. I told them of the other hospital that said they can absolutely do it, but only privately (mucho $). Then the technician tells me she spoke to that [private] hospital and they said they have the same machine (apparently standard all over Israel) and can't do it any differently than what they can do. That's not what they said to me, but I was stuck... the HMO already agreed to pay for it, this was my only shot. I was already gowned-up and feeling vulnerable, with an IV tube sticking out of my sleeve.

In the end it was the longest MRI I ever experienced (well it was two, actually)... well over an hour. One cool thing that I never had before was classical music piped into my ear phones! First Mozart, then Chopin (or Liszt?), then a Baroque period Bassoon concerto chamber orchestra and a harpsichord. My mind reminisced about my university days in Boston University, the orchestras I've played with, a typical day at Boston University for me, the apartments I lived in, the guys I dated during that time period. A trip down memory lane. :)

The doctor and technician were proud of themselves when they freed me from the tube-- they succeeded in doing 3mm cuts throughout. OK, dudes, thanks, but my doctor asked for 1mm cuts. Unless I go privately, though, I won't be getting that. I'll send this to New York and see what the surgeon says. If he says it's not good enough, I'll have to consider doing yet another one (two).
That would be much longer time in the tube not moving. I'd need a sleeping pill, honestly. It's not easy. The doctor in Jerusalem today told me it'd take three hours if it's possible for the machine at all. But I need the New York surgeon to be *absolutely sure* of what he may be getting into, and absolutely sure of his plan every step of the way. It's a very scary procedure, this reconstruction surgery. I don't know if I'll go through with it. If it all works out perfectly, it could be VERY promising for my abdominal pain issues and skin graft issues. But I know, and you know, that surgeries don't go perfectly, regularly. What I know I went through, and what I witnessed Sabrina suffer through her last year and a half because of surgeries gone wrong, and what I have seen on my NF support group, I know TOO MUCH. I've seen too much.

OK, I'll back up. I don't have to make that decision yet. I'll have a Skype conference with the New York surgeon after he receives the disk, and we'll be wiser.

Oh, I think I didn't tell you-- here's a good reason *not* to check email before you go to sleep. I did last night- on my exhausted night after Sabrina's memorial- checked my email quickly. What popped up? "On this day last year. See pictures of this day last year!" I think it's from Google+ or something. I clicked. The pictures were from the last day of sitting shiva for my dad, when my brothers and I, standing together, blew out the week-long yahrtziet candle while standing in the living room of my late parent's house (now sold). That's what I needed after Sabrina's memorial and such an intense day?
I sent the picture to my brothers, a reminder to them, too. (for their privacy I won't post it here)

That's how I fell asleep last night (with my new sleeping medicine, thank you, Dr. E!!)-- with thoughts of Sabrina z"l, Tessa; my dad's death, selling their pretty house where I grew up, the works.Then the MRI today and I'm BLOWN.

Good thing Shabbat is coming. I think I'm going to rest a lot.

It's good preparation for Chanukah next week! I've been taking these amazing Torah classes and learning some beautiful and mysterious things about Chanukah. The kids have their winter break from school/yeshiva. Oh wait- next week on Tuesday we have to travel three hours to Dov's yeshiva for parent's day, and drive back the same day, but taking Dov with us back home for his winter break. I think I'll be re-fueled by then. But vacation time-- all offspring home-- family doing things together-- it sounds great, but I'm so, so exhausted. And still dealing with pain and PTSD.
I have to get it together. Hashem, give me strength.

It'll all be OK. There is such goodness in the holiday of Chanukah, and such inherent strength built into it spiritually, And the kids love it. And it's over a week, together-- rare these days! It's all good. B'ezrat Hashem, with the help from the Maker of the Universe.

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.

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....

Post Traumatic Stress Disease... the gift that keeps on giving

Recently I've joined a few on-line support groups for people who survived NF. Sometimes I forget that there are going to be things specific to the fact of having been through this particular nasty disease and it's ramifications. One such ramification that nearly everyone relates to and talks about is the aspect of PTSD afterward.

This is what is going on with me...
I'm having a recurrence of the PTSD. It took me a long time to identify it, and there are other things in the mixture that are affecting what is happening with me these days, but that is a big factor. I believe it is stemming from being with my friend Sabrina while she was dying. There are many gory details that I don't need to, or want to get into here, but what I thought I could handle went into hiding in my subconscious for a few months and has been eating away at my emotional state, my sleeping, and at this point just about every aspect of my living. My PTSD was so bad after I had NF, a year later (2008) I was hospitalized for three weeks in the psychiatric hospital here in Be'er Sheva.

PTSD is insidious. You don't know that it can be responsible for depression and sleep problems, among other things. My depression has been getting so bad lately, I cannot enjoy anything. I mean, I can enjoy things on a surface level, really enjoy being with friends and in social situations, but darkness lurks for me when I try to go to sleep. I thought it was my sleeping pills not working anymore, but now I realize it is the PTSD. I haven't had it this bad for a long time. And, it took a few months, since Sabrina passed away, to manifest so strongly so that I could clearly see it. Same thing happened after I had NF; at first I even went back to work with birthing couples, and even playing horn in the orchestra for a few months. Then, at about the six month point of after NF (physical wounds still not even healed completely) I had a break down of sorts, and checked myself into the psychiatric hospital at my psychiatrist's advice. That was my introduction to psychotropic medicines and sleeping pills.

I had no idea that my PTSD could ever get that strong again.

Well, it can.

Also, problematic here is the fact that my medicines have changed drastically over the past few years, and I haven't had any psychiatrist at all in my life going over it, giving input. I've kind of used my neurologist for that because of needing to deal with the migraine problem, but one hand did not speak to the other. I went off the Fentanyl, went off Lamictal (which was specifically for PTSD), and am now on a large dose of Depilept for the migraines, and my GP raised my Cymbalta. All of this with no input from a psychiatrist. So, it's time for that.

I plan to go back to the one who I last saw at least three or four years ago, because she is the last one who knew my case. Robert tried to call her this morning, but she wasn't in today. It is urgent. We will try to get in to her tomorrow. If not, maybe they can give me someone else. She specializes in PTSD, though. We are even thinking about the possibility of another hospitalization, but are very much hoping on getting a hold of this as out-patient. The depression and sorrow are sucking away my life, I can no longer cover it up. I'll get help.

I know that Hashem (God) is always there for me, stretching His hand out to catch me when I am falling. The challenge is to stretch mine out to grab on and feel my will and life-force again. It's in me, but quite buried. Buried under hospital nightmares of the past... which are still quite present for me.

Sweet potato salad, with a side of relapse

It took a long time before my dear friend Miriam and I could find a time to have a "date" together. Life is so busy, it's a rare opportunity when it comes around.

We went to a cafe in a mall. It was *packed*... something we didn't expect. It was the day before the fast of Esther (two days before Purim), and all the high school kids were dressed up in costumes, as is the custom for Purim, and that mall was apparently the place to be seen. And what a scene it was... cupids, zombies (complete with fake blood), pirates, prisoners, an eerie fellow wearing a mask of "The Scream" (by Edvard Munch), Goldilocks, and yes, even street walkers (how do their mothers let them out of the house like that??!!). I'm telling you, it was strange, mostly because, even though Miriam and I both are raising teenagers, we didn't know that this is the thing to do. Our kids didn't do the "hang out in costume at the mall" thing. It caught us off-guard. And it was so *loud*! But since our time together is so limited, we decided to take a table at the cafe anyway (instead of relocating), and order our lunch. At one point I got a call from Robert, and I actually had to go into the elevator corridor so I could hear him, it was that loud.

Near the end of our meal, we suddenly see and hear costumed teens at the top of the nearby escalator running and screaming. We had no idea what was going on. I thought it was some sort of Purim prank (weird things happen all over this country around Purim, expect the unexpected). But, like an ink spill, people all over the mall were also beginning to panic and head for the exits. Rumors using the word "terrorist" could be heard, yet nobody around us knew what was going on. We obviously got up and headed for an exit as well. I instinctively reached out for Miriam's hand, I was getting a bit freaked out. Holding hands, we decided to wait for the elevator (where minutes before I was calmly talking to Robert on the phone), because everyone was crowding the escalator.

As we waited for the elevator, people were scattering all over; some panicked, some bewildered, most were worried. The absolute strangest thing? That these were also all sizes and forms of people in costumes... there were teens running around with fake blood on them, a guy dressed all in black holding a long knife/sword thing, and girl/hookers. The only word to describe it is SURREAL.
Was there a knifing? Is the terrorist running free? Is anyone hurt? Nobody knew anything.
While waiting for the elevator, we heard what, to me, sounded like a gun shot. I lived in Manhattan on the edge of Harlem in 1991, I knew what gun shots sounded like.

We were all alarmed. Well, Miriam was pretty calm. I wouldn't let go of her hand, though.

Eventually, within 10 minutes, the entire contents of the crowded mall spilled out into the parking lot. On the way out I asked the security guard if he had any information, and he also didn't.
People (teens mostly) were crying, shocked, and traumatized out there waiting around in the parking lot. And all the costumes and elaborately made-up faces.... it was like out of a Fellini movie. I, personally wondered if a terrorist with a knife was going to run out in our direction at any moment.

Miriam asked me if I'm OK. I said yeah.
A few minutes later I said "...actually, Mir? I'm not so OK".

We made our way to the car amidst the sounds sirens, police on their way. We didn't see an ambulance, so we hoped that was a good sign.

We got into my car, and I kept pressing the code pad on the dashboard with the code I was sure was right. I have driven that car for four years, I *know* the code. But in my shock, I didn't remember it. I called Robert to ask him the code. He was surprised, but I didn't want to startle him and tell him what was going on (and we still didn't really know what was going on). He told me the code, and we weaved our way past police cars to get out of the overloaded parking lot, to the exit.

As we exited, we heard two huge booms.
Me to Miriam: "did you hear that"?
Miriam: "yes. Let's not jump to conclusions..."

At home, I told Robert about it all via texting with him (he was at work), but we still didn't know what, if anything happened. There were no news reports yet. I talked about it a lot in those next hours. I told my kids what had happened, I was definitely in a state of high alert, possibly a little shock in there, too.

A while later, Robert texted me to ask if I am OK, if I felt that I am over it. I wrote "yup", with no hesitation. By that time we pretty much knew that the gun shot sound was a firecracker that someone set off in the mall (very common on Purim), and that also two teens were having some sort of an altercation, maybe a knife was pulled, maybe not. The news reports were contradictory. What was clear was that nobody was hurt, and there was no terrorist, thank Gd.

I was over it.

The next day, I started feeling that cotton-heady feeling, dizzy, and like my limbs were all heavy. Incredible fatigue. It was a fast day, but after about one in the afternoon, it was clear to me that I had to break my fast. I did so, and I had hoped it would make me feel better, but it really didn't help much.

We went to the synagogue for the night of Purim. I felt awful, physically, but I got there. It was the first time I didn't go in costume... I had no energy for that.

The next day, the big, busy day of Purim, my limbs felt like anvils. I was so weak, I felt faint just walking to and from the bathroom. I didn't leave my bedroom all day, even though there was Purim going on. That was the day I wrote my last post- the one called "I'm getting lost". I didn't get to any Purim festivities, including our traditional community feast, which I have *never* missed. It was truly sad for me, and for my family to have to separate. I just could not move. Oh, and I had a migraine come for five hours, then go, in the middle of the day, as well. It 'went' because I used some heavy medicines to take myself out of my misery.

Friday was the same. A tremendously busy day, but I couldn't do anything. I did get out of my bedroom, but again, my limbs felt heavy, and I was so weak that my joints actually hurt coming down the stairs. That *never* happens. It was so uncharacteristic. I was convinced that something big and bad was wrong.
Thankfully for us that our guests for Shabbat actually canceled, and we (Robert) had less cooking to do.

Shabbat came, and by afternoon I was feeling much better. I went out on a walk with the kids, actually, which felt awesome, like I was breathing for the first time in three days. And just like that, I was feeling normal again.

So, what is the explanation of all this?

We'll never be sure, but, on Friday I had a conversation with my wise and intuitive sister-in-law, Rivka. She already knew the story of what had happened in the mall (as did anyone else who read my Facebook update that day). She suggested that it was a relapse of the PTSD, triggered by the mall incident. Even though, intellectually, I knew that there was no terrorist attack, for a long while there it felt like it, and that is all your parasympathetic nervous system needs to "know". PTSD is like an instinct, once a person has had it, it comes back when the primitive part of the brain stem gets activated by trauma.

What strengthens this hypothesis more is that the day after my conversation with Rivka was when I started to feel the fog lift. What I know from physical responses to emotional triggers (a whole book in and of itself) is that once the person names the emotional problem that triggered the physical response, the physical response no longer has the need to be there. In my history, I have had a certain chronic back pain, and I know that it happens when a certain type of stress and trauma enters my world. When I feel it, I "tell" myself the message like this: "I know what you are, back pain, I don't need to pay attention to you. I get what is going on here, this [subject] is an issue these days". And, it always goes away within a few days. If you want to learn more about this issue of physical pain being a manifestation of emotional triggers, I highly recommend the book "Mind Over Back Pain" by Dr. John Sarno. I read it in 1990, and it changed my life.

In 2007, about six months after I had NF, is when I got hit hard with PTSD. I spent three weeks in the Be'er Sheva psychiatric hospital because of it... it was *that* bad.

So it is quite possible that what happened last week after the mall incident was a relapse of the PTSD. All the symptoms lined up, hit me over the head, and then went away.

I am constantly taken aback when I learn more about the delicate and intricate network which is me, in the aftermath of being plunged into that crazy disease, Necrotizing Fasciitis. We know a lot about the revealed complications and ramifications, which this eight-year blog discusses regularly. The psychological, more hidden repercussions, however, are much more subtle because they disguise themselves as a physical malady to be grappled with. I feel as if I have been enlightened tremendously by this episode. I hope that, if it happens again, I will be able to recognize it and talk to my body, telling it that we don't need to act out emotional triggers. We can just recognize them, and let them go. And move on into health.