Not light reading

There are times that I don't feel like I have C-PTSD (complex Post traumatic stress disorder), and can feel pretty normal. Then there are the other times. I am finding myself fighting my demons these days. Depression comes in from I-don't-understand-where, and I am down for the count.

We just had a whirlwind of holidays here in the land of Israel, all of which are good, hard, and challenging in equal portions. I also just got a cast off my hand, which was on for three or four weeks... I lost count. It was for a suspicion of a broken thumb, after I had fallen down at my gym. The floor was wet and there was no "wet floor" sign, and I slipped right there. I think the cast was on too long, but the hospital didn't give me an earlier appointment at the orthopedics clinic. Now I am dealing with pain in that hand as well, yay me. I am supposed to do occupational therapy with it, so we'll see how that goes. As of now the hospital hasn't yet given me an appointment to start the OT, but I am back at my job with the jewelry making, and that uses fine motor skills, so that should help.

The holidays we heavy, and good and hard all at once. We hosted many people for big meals over the three weeks, we were also guests by friends, and we also got to visit many friends. Best of all was the visit from my son Dov and his lovely wife and delicious baby! It was all very social. Close to the end of all the holidays, when the title of the holiday has the word "happy" in it (Simchat Torah), I got really down, and whether or not it is related, I got some sort of virus which dragged me down as well (I'm still dealing with that virus or whatever it is).

I got down about the stuff I am used to getting down about, and I couldn't stop it in it's tracks. That "stuff" is that I feel aimless, without motivation, without drive, and I mourn my losses again. Those being the losses of my music career and my doula career, both which were booming when I got NF, when it all came to a halting stop. I admit that I have not touched my horn in over two years, and I am also not advertising for my doula work. I don't feel I can commit to a couple to support them throughout their birth. I don't have it to give these days.

The pain persists. It makes me not want to do anything. I think that is the biggest downer and the reason I have no drive, no motivation. I haven't yet heard from my surgeon in NY about his opinion about the MRI's. It's now officially been a long time. I finally wrote to him today to check on the progress of that. I hope to hear from him soon. But I also know that timing and such things are in Hashem's hands. I'll get his opinion when I am supposed to get it. I am not rushing to do any surgeries any time soon, even though I am in pain. I am just blocked about going ahead with another surgery. I can't do it. I think I need my other hip replaced (three orthopedists have confirmed that), but as I don't have my doctor in NY's opinion yet, I am not going ahead with anything. It is more than that though, I think that even if I had his opinion, I would be blocked about going forth with another surgery. I just don't want to do it. I have had enough. I am at an impasse with myself. More surgery seems insurmountable at this juncture in my life. I have had 14 major surgeries, some of them quite intense, was in an induced coma, and have limped on one side or the other for many years. My body is screwed up. My soul feels screwed up too. I haven't been in any sort of therapy for well over a year, and that's OK with me. I think I've just had it. If it comes to me needing surgery and the choice is no longer a real choice, I will probably need more therapy to wrap my head around it. I have just been through too much. And I miss my life from before NF. It comes down to that, I think. I miss being driven and successful in my careers, and I miss the "me" I used to be before all the medicalization of my life.

I have been having nightmares again also. I don't know what causes them, but they are nasty. Messes up my whole night, and sometimes the day as well. I wake up yelling, and get totally freaked out, and need time awake to decompress. For a week, the week of Succot, my husband was sleeping in our "upstairs sleeping succah" (to be differentiated with our "downstairs eating succah"), and I wasn't, so I was alone in bed. I had a major nightmare while he was outside and had to process it alone. I'm glad the holiday is over and he's back in our bed. The nightmares are from the PTSD of course, the content of them makes that abundantly clear for me. They get me when I'm down. The Cannabis used to be good for deterring them completely (like magic, I am telling you), but I unfortunately got sensitive to it, got headaches every morning, and had to stop taking it.

I hope this new year on the Hebrew calendar will bring me peace of mind and body, although that feels too far to grasp right now. I pray that the pain will chill out without surgery, and that I return to at least one of my previous hobbies/ careers. I'm only 54, it's too early for me to give up. But I can tell you that giving up is my constant shadow.

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....

Update: More Complications

This is one of the lowest times in my medical history. Two months now... Two months of pain with no improvement, and it seems to be getting worse. I can barely stand for any length of time without tremendous general pain in my abdomen.

I'll cut to the updates:

The gastro doctor who said he'd take on my case- Professor Fich:

He did get back to me, thankfully. He said he looked over my CT (CAT scan), and said that he feels the original evaluation of ulcerative duodenitis is correct. Together with that, HOWEVER, he feels he sees something amiss regarding my stomach wall surgeries. He couldn't be specific, he feels it's the job of a surgeon to evaluate. He saw something not right with the mesh/clips/pins holding things together in my belly where the NF left it's big hole. Where we all call "Gapey".

One of the problems with that is that he never saw my belly before, so he doesn't know what it normally looks like. In a responding email, we asked him if he would be willing to compare this present CT with an earlier one, because he has access to all the CT's in Soroka. He declined to spend more time on it, saying I should go see a surgeon. OK.

I feel that could totally be right, even without him doing a comparison study.
This summer, while dealing with the staph infection from hell (the one that lasted what... 6 months? on my skin graft? --it's gone now- that's another story- I used honey on it!), I felt that the whole mesh inside me was inflamed. I felt all those clips, I felt the entire mesh. It was bugging me all summer. (can you imagine feeling a hernia mesh inside you?) I remember telling Robert that I wish I could have it removed. One of the clips was actually protruding a bit, I thought it was going to make it's way out of the skin graft itself. I kept a bandaid on it, it calmed down. But I wouldn't be surprised if there is some sort of grand inflammation, or adhesions or all of the above, or some option I don't yet know about, is happening in there. I feel a lot of pressure there. What I know is that the pain is mechanical in nature. What I mean is, when I lie down, it goes away. When I start to sit up, it starts to hurt. When I stand up it hurts the most. The more I stand up, the more it hurts. To the point of, if I stand up for 10 minutes or more I am out-of-my-mind with pain. I did that the other day. I decided that I was going to do one task from start to finish. I was going to put up a pot of soup. It's one of the only things I can eat- vegetable soup. I took out the vegetables, washed them, started peeling, chopping, putting in pot, simmering, etc. By the time I sat down, I was in SO MUCH PAIN I COULDN'T EVEN TALK. My daughter was getting an Arabic lesson, and her teacher was at the table. I sat down at the table, their lesson was over. I could not talk. The teacher looked at me, a frightened look in his eye, perhaps matching the look he saw in my eye. He said "breathe"....

On the phone last night with Dorit my Homeopath, she (also a physiotherapist herself) asked me about other positions, testing out the adhesions theory. She suggested hands-and-knees. I did that in bed, and BAM- within about half a minute, I could barely breathe again because of the pain. Yup, her theory was proven. We're not exactly sure what the theory means, but there is some sort of adhesions, or blood vessels that are getting smushed and not letting blood flow properly in certain positions.

It may have all started with that stubborn staph infection on the graft. I knew it was going inside, I felt it. It was only visible from the outside, but it kept oozing, for months. That means it's coming from the inside. I kept trying to tell my doctor, then the ER. They didn't even swab it. Not until it was really far along. When will they LISTEN to me?

So, now I need a surgical consult.
The only surgeon who I would let touch me near that mesh is the one who put the mesh in, eight years ago, Dr. Amir Szold in Tel Aviv. He is a very talented laproscopic surgeon who's name came to us, of course, by Rav Benjamin Fisher at the time. Dr. Szold, however, doesn't have an opening in his schedule until the beginning of December. Weh-weh. Robert called Rav Fisher back. Explained the whole story. Rav Fisher told him that Dr. Szold is away for this week (how does he know these things?), but that Robert should try to call Rav Fisher next Wed or Thursday, and he will try to get us an urgent appointment. Let's hope that works out. In the meantime I'm going to try to get an MRI so we have that for better analysis of the situation. That should keep me busy, just trying to get that.

Emotionally I'm a mess, but that's to be expected. I'm crying every day from sheer frustration. I've really lost so much. Remember when I was just one or two months after NF and I was doing 20 hour births with women? OK, I know that was also extreme, and not always in my best interest, but there was something badass about that, right? Well, maybe not. I mean, I was still in bandages, for Gd's sake. But pain, pain is a thief. It has robbed me these passed two months of so much. And I know that there is more to come. I know that this one is not going down without a fight. This is going to be a tough one. There will be surgery, and not simple surgery, I'm almost sure.

The worst part is that I am letting it rob me of my faith. I am angry at Gd. I mean, why is He picking on me so much? Last Friday night I started talking about Dr Kevorkian... poor Robert had to sweep up the pieces of that mess. Thank Gd for Robert.  I know questioning my faith is really not a good path to go down, for so many reasons. So I try not to. But com'mon... TEN YEARS since I had NF. It's been one thing after another. Ten years ago the doctors were optimistic that I will rehabilitate well after NF; I was young, strong, healthy.
Last night on the phone with Dorit, my homeopath (and long-time medical friend) I asked her how will I rehabilitate after this? So much time in bed, I probably will need surgery, I'm losing so much strength. She said "you're young". But I'm ten years older, and not as healthy anymore. I'm going to have to really work at rehab this time, it won't come easily. I already feel so weak and tired, and drained.

I wanted so much more from life. I still dream of my careers, of who I used to be.
(and I have nightmares of puss coming out of my belly, alone in a strange room, reaching for a water bottle with a parched mouth only to find the bottle empty... terrible nightmares.)

But I have to remember to be happy with what I have. I have what many people will never have... an amazing husband, 4 incredible beautiful children, a home in eretz Yisrael, and incredible friends and loving family all over the world. Thank you all for being my people. Your words are hugs to me.

All good things must come to an end

My days have been filled with vacationing, doing fun things, my family, my father.

And two migraines have ambushed me.

My nights are the worst, though. I've been having creepy dreams, then I wake up, and all the sadness comes to me in a big wave, overtakes me.

By day my father needs me to help him through his grief waves. My own can't coexist with his. He is so depressed to have to set out on life now without his wife of 58 years. I can't imagine. All I can do is offer support and make sure he knows we will not leave him living alone in his house. We are looking into options.

At night my sadness comes out to get attention. First in the disturbing dreams, then after I'm awake from that, all this stuff ruminates in my head. I no longer have a mother.
Thoughts of her alive and well dance around in my active imagination.

I have a very sick friend in the hospital in Israel (I'll call her S). She weighs heavily on my heart, too. She is getting worse. We pray that the doctor Rav Firer recommended can help her out if this mess. Please pray for Shoshana Chaya bat Bassie. Give it all you got.

We're leaving the Connecticut house today. It is presently dawn here, and I have half a mind to go down to the dock- a few meters away- and take out a kayak in the lake, and coast in the quiet. But we had a rainstorm last night and the day is overcast and humid. And I should try to get more sleep. I'll miss this lake, and the kayaks, canoe, and paddle board.

It was a good week.
I wish that my mother could be been with us, she would have loved it, and seeing the kids so happy and enthusiastic.

I miss her so much.

But right now, my dad's grief needs to be held and loved. None of this is easy.
I'm going to shut my eyes for a while before the busy day starts.
The anti anxiety pill is kicking in.

Shabbat shalom from me to all of you.

XOXOXOXO

"blue" in the butterfly house in Norwalk aquarium

A message in a dream

Things are so good. I mean *so good*.

Yesterday evening, Christine Kloser's daughter (Christine is the of the facilitator of the conference, and my teacher/mentor/guru woman) called her to say good night.

Christine Kloser

Christine held the phone up to all of us so we could all say good night to her daughter. After the room did that, I asked her if she'd like me to sing her daughter a Hebrew lullaby over the phone. Christine was all for it, so she brought me her phone, and a microphone, and I sang, with the whole room listening, what I sing to my kids every night- המלאך הגואל אותי- "hamalach hago'el oti", which is a blessing (from the Torah) saying that the angels of Hashem who have protected the children from evil should accompany them into the night. The translation isn't quite that, but it is a lullaby, and quite beautiful. I hadn't sang it to my kids in a week and a half, and it obviously needed to get out of me. It was a beautiful moment.

Aside from that, I have been speaking, in the microphone to the whole room, a few times. It is really good for me, and people are very responsive! I am getting such positive feedback here, it blows me away. I am considering putting myself "out there" for public speaking; for inspirational speaking. I am beginning to see I can contribute and serve that way.

My book is being shaped and worked. "Honed", one might say. The biggest breakthrough has been regarding the message that the book will deliver. All books need a message. Blogs don't. This breakthrough was *tremendous* for me. I understand my book on a much deeper level now. The message that came to me (on the *first day*, mind you) rides on a dream I had while I was heavily sedated in the hospital when I had NF. It was probably the most beautiful dream I have ever had in my life. Until now, I had thought of that dream simply as a blessing from God, the gift of beauty in the midst of sorrow and horrific pain. I held onto that dream, it was incredibly powerful for me. I'm not sure if I wrote a blog about it or not, I have to go looking into the archives. That dream came to me here, at this conference, as the invitation for the message of my book. I don't want to say more, it needs to be only in the book. But it is BIG. Primordial. Never underestimate the power of a dream. I have been so light, and happy since this came to me. I am in awe. I tell you, the room that we are in for the conference is *fertile*. An entire lush garden would grow there with just one small seed and a bit of water. The light is there already.

can't tell by looking at it, but the energy in this room is magnificent.

The people I am with are extraordinary people. I am quite sure some of them are reading this. Hi, guys! XO

My life as a writer has grown here. The promotional aspects of being an author have also grown, and I have a clear plan for how that is going to go. Christine, the facilitator/mentor/guru (with a small "g"), would not let us out of there without a clear plan. And resources galore!

She is phenomenal. I'm so happy my intuition didn't fail me with this one. Money and time well spent.

I am going back to NY tomorrow, but not until I hop around Baltimore a little before catching my train back. Going down to the "inner harbor" for a tiny amount of tourist time.

Back home on Wednesday (the 17th). I miss my kids and husband SOOOOO MUCH!!!!!!!!!!
The time difference, and the conference have made it really hard to call and hear their voices. I skipped out of the afternoon session a bit today because I couldn't bear another day going by without hearing their voices. I got what I hoped for. :)

There have been a few times that I was so tired that I had to nap and miss part of a seminar, and once that I slept late by accident- I thought the alarm was on "snooze", but I had inadvertently turned it off... but I really needed it. Pain has been difficult; I need to get lymphatic draining big time when I get back. As well as the lymphoedema, both my hip joints have suffered from sitting in the chairs so much of the day. But overall, I am making it. The inspiration I have gotten here is outweighing just about everything.

OK, gotta go. I'm headed back to the convention hotel for the evening's entertainment. The seminars are over as of this afternoon, but tonight there is musical entertainment which I am looking forward to enjoying!

One request- if you know Robert, send him an email or give him a call to bolster his strength. What he is doing for me is not easy, and he is very tired. I love him very deeply for giving this to me- it is the opportunity of a lifetime; partly because I can be with my parents "solo", and partly because of this phenomenal conference. So, let him know he's awesome. And maybe send over dinner if you can so he doesn't have to think about what to make for the kids one day. Got a car and some time one afternoon? Shifra probably has ballet (4X/week)... maybe offer to take her? Thanks. :)

Signing off for now. I hope some of my light has reached you through this portal today. 'Cuz I'm a-glowing. :)