AFTER!!

This is hard. I mean really really hard.

It's also good, it's a good process to heal from this elaborate surgery. But OMG it's hard.

I'll start off by saying the surgeon is very pleased with how things went down in the actual surgery. He didn't find things he was hoping wouldn't be there, and he found it all relatively according to my scans and exams. In other words, no surprises, which is amazing. He did find that the mesh was folded over on itself, which could definitely have been causing my pain. He was able to take out the clips that were bothering me, and about 60% of the mesh, which is really good. The other 40% was too incorporated to remove, but since it is incorporated, it shouldn't cause me pain.

He pulled, cut, manipulated and flapped all sorts of muscles in my stomach and upper thigh to get proper coverage over gapey. It is really incredible. The big reveal was yesterday, I saw what he did. I now have one big, smiling scar from hip to hip, like 4X a c-section scar, and a perpendicular one by my belly button. That's it. No more gapey, no skin graft. Amazing. Incredible. I honestly never thought I'd do this surgery, and here I am, after it now. I did it. I'm bad*ss.

But I cried when physical therapy came and told me we are getting me out of bed. "I'm not ready, give me another day" Nope. Now was the time. So I didn't have a choice, I did that. I got out of bed on Tuesday, not even 24 hours from the surgery. G-d that was hard. Then they took out the catheter, and I had to use the bathroom independently. All these stages were so insanely hard, I cried. But I had to do it, no matter how hard it hurt. And it hurt. A ton.

In fact, I don't think I've experienced this much pain since the mesh surgery (2010), and before that, not since NF. It's on that level. You don't want to know all he did with muscles there in my belly, of course it's going to hurt like a b*tch. I said the scar was like 4X as big as a c-section, but the pain is much more than 4X that. Muscle grafting is so painful.

Getting out of bed, walking around to the bathroom, the occasional walk in the hallway, it's all so complicated. The doctor doesn't want me straining at all, so I'm trying to do everything with relaxing, but it hurts so much it is hard to relax, obviously.

The nurses help a lot to be on top of the pain meds. The nurses are *uh-may-zzing*, actually. So kind and sweet, always trying to help, always answering the call button within a minute, always offering alternatives if they can't give you narcotics at the time you feel the pain coming back. They are just so sweet, all of them, I am blown away with their kindness. I was in culture shock that first day when the nurse was so nice to me-- it's a pretty different experience (read: radically different) than most Israeli nurses. I definitely understand the concept of medical tourism-- it makes sense to me now, and especially after Mayo last summer as well. I know one can have a bad experience here, but I have been very fortunate indeed.

I just still can't believe that Gapey is gone. I'm good with it, don't get me wrong! I just want the pain to subside to easier levels. Today is 5 days after surgery, and while it's a little better, I'm still moving *very* gingerly, and in lots of pain. The meds they give me for pain (Oxycodone & valium, believe it or not, it helps with pain too) usually give me a big nap. They put me right out, so I'm sleeping during the day a lot too, which I am pleased about. Also at night, last night I slept through the night for the first time since surgery (except when the nurses woke me to take my vitals, but I got right back to sleep thereafter).

OMG, did I tell you about my room?? No? Well.....
It's the best room on all the floors, the corner room. The size of it, well, Soroka hospital (the one in my city in Israel) would have put 6 people in it with flimsy curtains surrounding the beds. This was a private room, all mine! Purely by chance. The view, it was stunning. (I got discharged today and am currently at a hotel). I had a corner room with the East river outside, and the skyline all around the river. Sunrises and sunsets were stunning, we took so many pictures. There was a private helicopter port right under the window, so we saw helicopters landing and taking off all day. And the barges, yachts, and boats that passed by were all stunning. I wished I could be on one! Amazing room, again, very lucky. There was a comfortable pull-out couch for Robert to sleep on, and he slept well most nights. If I was up and in pain, he was up though, my night in shining armor.

Seems like the kids are doing well. We've "seen" each other on the phone (face-time) a lot, and spoken with them a lot. It's one week down, five more to go. I hope they'll be OK. If you see any of them around, just check in with them OK? :)

It's almost Shabbat in New York. I miss Shabbats in the Holy land. There's nothing like them. This blog is long enough, I'll write more soon. Next week (July 1st) we go to a friend-of-a-friend-of-a-friend's apartment, which she is lending us for free for the month of July. It's an amazing situation, and I am so grateful!!

Have a Shabbat Shalom to all! Coming to you from a hotel in the neighborhood where my mother grew up (Murray Hill), Sarah Rachel Bat Tova.

We have a date! ...and fear.

It's coming up fast... June 24th is the date.
I finally heard back from the surgeon.
June 24th.

We'll be flying out on the 20th. Robert is going to stay in NY with me for about three weeks, then he'll head back. It's important to me that he gets to visiting day at Azriel's sleep-away camp. There was the year neither of us went because I was after my mesh surgery and in incredible pain, I needed Robert. Dov was not a happy camper, literally. He was set up for the day to hang out with his best friend and his family, which is like our family, but he wasn't warned beforehand that we couldn't come. I kept thinking I'll make it. But I didn't; it's a three hour ride to the camp, I couldn't make it. He cried. :(  I took him out to a movie theater movie after he came home from camp, just me & him, to "make up for it", but it didn't make up for it. Here is the blog entry about that.
So I'm [hopefully] sending Robert back to Israel to be at visiting day for Azriel.

I still have a lot of questions for him, I hope we have a Skype conference soon. He said he'll go over all the information with me soon. He requested photos of the area so he can look at them and clarify things as we are talking. This information that I need is vital. I need him to answer my questions.With the help of G-d, everything will fall into place. But as of now, it is looking like I'll go out there June 20th, spend Shabbat there, then have the surgery on that Monday. I'll still be jetlagged, but a little less after 4 days of adjusting. My immune system is often weak when I'm jetlagged, but I'm hoping the four days of resting will help matters.

I'm getting paranoid these days. Every time I thought it was a good time to do this reconstruction surgery in years passed, something happened with my health...another bout of cellulitis, too much pain, a million things. Then there were bar & bat Mitzvah's that I needed to be healthy for. Now, I am looking for a sign; a sign that I made the right decision. If something happens with my health, that will be a sign not to go ahead with the surgery. But I want a positive sign. I need to know I made the right decision, and that it's blessed by Hashem. So far my immune system seems happy, my kids have been sick, and it seems I got out without catching what they had. That's a good sign. I have like three or four little cuts these days, and I keep wondering if one of them is going to get infected and give me sepsis again. I know to you it sounds crazy, but to me, I think about it with every cut I get. I had sepsis, and Necrotizing Fasciitis, nothing is too outlandish for me to think of. Call it paranoid, but everyone on my NF support list feels the same way. It's just what happens after such an insane disease gets to you.

I remember how painful the mesh & clip surgery was. This is in the same place, but to take out the mesh and clips and put in something organic. I'm worried about pain levels, and how to control it. The mesh surgery was painful for an entire year, and only lightened up when I started on the Fentanyl. I do NOT want to be forced to that route again, obviously. I think the skin stretching will be painful, too, but it's worth it to get rid of the skin graft, if that's possible. I sent the surgeon pictures, we'll talk soon. It's only Monday morning there, beginning of the week. I sent the pictures on Friday. I will write to him tomorrow about scheduling a Skype if I don't hear from him today.

I can't believe this is going to happen...in two and a half weeks. I'm nuts. But you know, people will do a lot to live a life without pain. I don't want to be on pain meds, and please Gd I have a decent amount of lifetime in front of me, I need to be out of pain. Even if the steroid shots worked (which they didn't), I'd be doing this, because they don't work forever.

I'm nervous, and have so many fears. I am working on my fears in the day program with my shrink. At the same time we are in the process of closing up shop for me there, temporarily. I'm getting a discharge, and when I come back we'll be in touch and my follow-ups will still be there. I don't feel ready to be done with that framework....it has been sooooo good for me on so many levels. OK, one thing at a time. I'm going to NY for the surgery, I'll be gone for at least a month, so I need the discharge. Nothing is a closed door though, they are so incredibly supportive there.

Oh, and to make things interesting (never a dull day), Robert and I spent last Thursday night in the ER with me with a horrendous migraine. Just to spice up life a little. The Cannabis didn't even help, it was so bad. They changed my "cocktail" a little (a lot), and although it helped the migraine, I still had the same migraine on Friday, but I was able to sleep it off. It started to come back on Shabbat day, and I was able to sleep it off then, also, and since Sunday I've been free of it. I started wearing my magnet necklace again, not sure if it actually works, but it can't hurt. That's all I need is my migraines coming back. I'm trying to figure out which food I might have eaten to trigger them- I had headaches all week last week- and it seems it may be from peppers that were in the marinade for olives. I ate those olives all week, and every day I had a headache. Paprika gives me headaches, and paprika is made of peppers, so I try to stay away from peppers, but I didn't read the ingredients in these olives. I'll learn.

OK this is too long already. Thank you for getting to the bottom!
More to come after I speak with the surgeon. We'll have answers, please G-d.

The second treatment, and March second

Lots of people have been asking me for details about Dr. Frischman, the Chinese & Jewish medicine practitioner I have been seeing for a few weeks. I can link to his blog, and to a general website he put together, which can be found HERE, or HERE. If you would like phone numbers, you'll have to write me a private email, I'll be happy if I can hep.

This week's treatment went way deeper than the first one. Wow, it honestly hurt so much, I was crying and yelling out. That doesn't mean it was bad in some way, just harder for me. It was two hours. And at the end we changed my medicines to another set... one of them is for pain. I wasn't magically out of pain afterward... contrary, actually, I hurt a lot on my drive home from Jerusalem. The days that followed were definitely higher pain levels than the previous week, but less than what we started out with. I have been sleeping with a heating pad at night, on my belly, and sides, where he is breaking up the adhesions manually. This is not sissy work... not on his part and not on my part. He works very strong and hard to get into the middle of the problems in my belly, and break up adhesions, and melt that ball/cyst that is there. Not just my belly, ribcage as well, and back- lungs. My entire abdomen is stuck with adhesions, and causing me horrific pain. None of this is easy. But, he fully believes that once we do it, break up all the adhesions, they will not come back. As opposed to surgically separating organs for where they are adhesed to, the adhesions will return shortly thereafter, because that is the nature of surgery.

I received in the mail finally the surgery report from my mesh surgery. I have been curious to see which mesh was used... there are many litigations going on about surgical meshes. People are aways sending me things about them, so I wanted to see which type was used in my abdomen. Turns out that the one which was used is a very high quality mesh with no litigations, thank G-d. But, there are many, many reports on the internet about the tremendously high rate of surgical adhesions with this mesh. And the one I have is HUGE, covering part of the pelvic floor and my stomach wall. No wonder I'm riddled with adhesions.

But adhesions can exist for many years without ever bothering the person. But one day comes, as the many reports on the internet attest to, that pain starts to take over. And it is very debilitating pain. It can be triggered by an infection, which in my case, I believe that is what triggered it. That infection I had on my skin graft last spring/summer which was an open wound which was constantly weeping wound fluid, it lasted four months, defied all antibiotics. It was swabbed as a Staph infection, but antibiotic resistant. In the end I was able to get it to close up by putting Manuka Honey on it. It was *amazing*. Two weeks of twice daily application and bandaging it up, and it closed up. But shortly thereafter, like a week later, this belly pain started. It was triggered by the Staph infection, and seems as though there is still some infection inside, "protected" by a cyst, in my gut. Dr. F can feel that cyst. He said this week it felt a bit smaller to him. To me it feels like a wall- a blockade of sorts- not letting good blood flow happen.

In fact, this cyst is probably very similar, if not the same thing, as was the lipoma which was extracted from my left thigh during my initial small hernia repair, the days before NF. The surgeon himself at the time told me it was "lymph nodes with old infection, surrounded by fatty tissue, enclosing them off from the body". But the surgeon took it out, in pieces, not knowing exactly what he was dealing with, and may have inadvertently released that infection into my blood stream to land me with Necrotizing Fasciitis. In the surgeon's own hand writing, as I saw on the initial surgery report, he wrote about the lipoma "Nemic?" (necrotic?), with that question mark. Yet, he sent me home a few hours later with no antibiotics as protection, and no instructions as to what to do or not to do. He said "if it hurts, don't do it".

So this cyst-like thing in my belly right now may in fact be the same sort of thing. But we are not going to do surgery on it and break it, releasing the toxins (infection) it is trying to protect me from. The idea is that it will melt away with these hand manipulations, and just be excreted like waste product. Same with the scar tissue which formed adhesions... it should melt away. I hope and pray we are on the right path here.

I am still worried. I still have that niggling thing in my soul thinking there may be some malignant process going on that is not being treated. I am still worried that the pain I have is something else entirely. It's going to take me a few more treatments to hopefully be able to put those worries to rest. Dr. F is so completely committed to helping me, I am entirely humbled. I trust him completely. I pray that with more treatments I will slowly be returning to myself.
We still have my knee to work on (swollen, hot, and hurts constantly -has a disease called cohndromalacia), and my migraines to heal. Everything in it's own time.

Yesterday was Purim, and it was a great, and very busy day. I think I overdid it, I wound up with a SCREAMING migraine at night. I don't yet have my renewed Cannabis licence (although it's in the works), and that is the only thing that can help take the migraine away. So, I made some key phone calls to people I thought might have some, and found a dear person who shared hers with me. I sent Robert over to her at 10PM, and I was all better by 11:15. Thank G-d. Today I have slight remnants from the migraine, and am laying low.

It's a work in progress.
At some point I have to get to the emotional place so I can perhaps cancel my Mayo clinic date (April 9th). I haven't done that yet, because I'm just not there yet. I don't have complete 100% faith that what we are doing, Dr. Frischman & I, is actually the answer and I will be out of pain. I've been working hard on making important dietary changes as well. I'm taking vitamin supplements, Chinese medicines, and fiber drink to even out things in my digestive tract. My homeopaths decided to take out the Homeopathy for this treatment with Dr. F, they want to "clear the field" for these other things to work.

I think I'll get there- I mean get to the place of knowing that I don't need the Mayo clinic to diagnose me, that these treatments with Dr. F will be exactly what I need. I know G-d brings us to the right people at the right times. I just need a little more time to believe it in my deepest innermost soul.

It's almost Shabbat on this very auspicious day of March 2nd... not only my handsome nephew Adam's 22nd birthday, but also it would have been my parent's 60th wedding anniversary. They got married March 2nd, 1958. I hope they are celebrating together up there around the atmosphere somewhere.... enjoying looking upon their beautiful progeny; the fruits of that marriage. I miss you mom & dad.

Happy anniversary, you two.

And to all, a Shabbat Shalom from the Holy land.

diagnosisNOdiagnosis

I'm losing my mind.

Yesterday I went back to the gastro doctor, and he said again (I saw him two months ago) that he doesn't think I have IBS, no matter what Dr. Ezra said. He ordered more tests; an MRI of the intestines, and a few more stool tests that weren't done.

Then later in the afternoon I went to Jerusalem to see my osteopath who I hadn't seen since last spring. I told him what was going on, and he decided to do accupuncture rather than an osteopathic adjustment like he had always done in the past. Because this problem isn't skeletal like my other problems, this is gut problems. He is well trained in accupuncture, and did a treatment. I'm sure it's going to need a series of treatments to have an effect, but almost needless to say I feel no effect.

Do I have the strength to keep going to Jerusalem for more treatments?

WE DON'T EVEN KNOW WHAT THE PROBLEM IS!!!!!!!!!!!!!!!!!!

I'm in pain constantly (unless I'm sitting comfortably or lying down), and I'm really losing it emotionally.

Everyone has different recommendations for me... the dietary decisions are mind-blowing. I can't do any of them. I literally cannot do any special diets, or make any decisions at all.

I don't think I've ever been more confused in my my life.

The world keeps going on, but I am less and less in it.

How am I going to figure out what is going on?

Now people are trying to convince me that the mesh & clips in my abdomen holding me together may be the culprit. But it can't be taken out without major reconstructive surgery, and muscle transplant. It's about the size of a child-size violin.... not a tiny piece of mesh we are talking about here. And there is nothing there to take it's place, you can't just remove it and expect my intestines to stay inside my body, because they won't. A thin skin graft is not enough to hold my guts in. That would be a whole lotta high risk surgery for unsure results. 

Let's hope the tests the gastro ordered will show up something.

They haven't even passed the approval of the kupat cholim (HMO) yet, so it'll be a while before I actually get them done. An MRI can take sometimes a month or more to get scheduled.

I just have more pain to look forward to. 

I have to finish my translating for the medical documents for the mayo clinic. I don't know if I'll go there, but I should apply for dates anyway.

I'm in such a bad place.

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.

Bronchitis... and gapey's opinion of it.

Who knew?

Who knew that me having a bronchitis cough would Hurt. So. Much.

Not hurt my chest... well, that, too, but that's no big deal. Chest muscles always hurt when you cough a lot. Nothing to write home about (or write a blog about).

But *this*... each cough is an experience in spasmodic pain, the likes of which I haven't experienced since the year I had the surgery that put the mesh in Gapey. That was a year of pain. It was the worst surgery I had to endure out of all of them. It was July 2010, and it was a horrifically painful surgery.

So it turns out that coughing, for about five days now, pretty intensively, makes a *lot* of pressure on gapey and the mesh, and I feel like I'm coming apart at the seams. I feel sharp stabbing pains (plural) in my lower left belly (skin grafts) with every cough. It was so bad the other day that I was sure I must have internal bleeding, or one of the pins which holds the mesh down got loose. It hurt that much.

So I went to an urgent care facility, being that I knew I needed an x-ray, and also that my regular doctor wasn't available.

They x-rayed my chest (to make sure my lungs were clear, and they are, BH) and my belly. The surgeon there said that all the pins are present and accounted for. That the pain I am feeling isn't dangerous, it's just pressure. He tried to convince me that the graft and mesh can hold up to the pressure of the coughing.

I hope he's right. I've had many coughs in my life, some really bad bronchitis, but I don't think I've had one this whole time since the mesh surgery. This is a whole new experience for me.

So the doc there gave me a good cough syrup, the goal being that I gotta stop coughing so the graft/mesh can mellow out. The syrup works ~a bit~. Maybe I get a few hours of cough-free time, but mostly the coughing persists, but perhaps less when I take the medicine.

I just have to wait this out. I don't have any fever, and my blood test at the clinic the other day was negative for infection, which is awesome.

We just are hoping that this pain goes away when the cough does. It hurts something fierce. I grasp my belly and double over when I cough. *Not* a pretty sight.

Let's pray that the mesh supporting my belly holds up to all the pressure, and that the damn cough goes away soon!!!!

(...and the rehabilitation of my right thigh surgery three months ago doesn't regress because I haven't done physical therapy or gym in a while.... I try to stretch and do some exercises, but my tolerance for pushing myself is pretty low these days.)

Flu. Bleh.

I jinxed it. I knew I shouldn't have written how things are getting back to normal! Who do I think I am trying to escape the view of the evil eye? ...getting back to a schedule.... yeah right.

I got this year's version of the winter flu. A lot of coughing, laryngitis, bits of fever here and there. Not fun at all. I know my immune system well enough to know it's going to kick the flu's butt, but it's gonna have to run it's course.

What's *really* not fun is having this swollen throat and cough with the click-clack of my throat cartilage problem. When I get better I am planning on going to a cranial-sacral therapist to try to relieve the misaligned cartilage problem. It is **really** annoying.

Another side effect of coughing so much?
Gapey is killing me. I really hope I didn't rip anything apart in there. It's a large patch of thin skin graft without any layers of fat. The stomach wall muscle can be seen through the skin, it's that thin. I am worried about the supporting mesh that is in there. Every time I cough it is an experience in muscle spasm pain on my left side. Not good. I pray it goes away when the cough does. If that gets damaged, I'm in trouble. (once, when I lived in the states, I dislocated a rib when I had bronchitis. I can *really* cough...)

Another worry is that since I have canceled my physiotherapy and cannot go to the gym, I am worried that my leg progress will regress. I am exhausted from being sick, and can't do my exercises... lets pray that the leg will continue on the exact path it needs for healing.

It's more painful these days, maybe because of all the cold rain we're having, who knows.

In general, well, yeah, that's about it. I am taking care of myself, and my kids are being very helpful. And Robert brought me chocolate. It is scientifically proven to help coughing!
Today I reached out to ask a friend for driving help, so I don't have to go out. Thanks, friend!! :)

Gonna go take another hit of cough syrup.
This, too shall pass.

Memories and flashbacks

May, 2007
Huge rainstorm over Shabbat
I worried, he was planning on taking the "back roads" home.
I wanted to know he was safe, I needed my doctor.
He called Saturday night, just as he did this evening with my friend.
I was relieved he made it back safely.
I only knew I needed him.

He apologized, asked for forgiveness.
I, confused, still in the thick of it.
My children were so young... 1+1/2, 4, 6, 7+1/2.
I couldn't take care of them.

I didn't yet understand the magnitude of how my life was to change.
Yes, I forgive you.
I didn't yet understand for what, exactly.

It was confusing.

PTSD came on strong, I was lost.
Psychiatric hospitalization, 2008, three entire weeks.
medicines, coping.
I called him from that place. It was again Yom Kippur, a year gone by.
I said I didn't forgive him, I now know more about my story.

I was angry, weak, still sick.
Hospitalizations, infections, operations.
Many, many more doctors. All shocked, I was so young.
It kept coming at me, like speeding cars at night.

One operation broke me, it was just too painful. The mesh inserted under gapey.
One whole year I felt the sharp pain of that surgery, the clips attaching it, latching on to what muscle was left.
Morphine, Methadone, Fentanyl, nerve pain medicine, more and more Fentanyl.
Pain relief.
I still feel those clips in my belly. Every day, all the time. Even at this exact minute.

I still couldn't take care of my kids.
Nanny's in and out like a revolving door to my house.
One actually stole from us at the same time she was caring deeply for my children,
lying down with my baby to help him sleep.
I wanted to do that.
She stole things from us.
Caring for my baby was stolen from me.

Did I forgive him?
He called that night in the rain.
He worried about me,
I worried about him.

I developed an odd dependency.
It was unexplainable.
I didn't see him much,
didn't want to.
Not a day when by that I didn't think of him, though,
think of how messed up things got.
hated him for his arrogance.

The years went by that way,
Countless trips to the emergency room.
My husband and I had a routine by that time. We'd look at each other,
waiting in the temporary bed, saying "here we are again".
Another week lost to the hospital, stolen from my kids.
Hospitalizations, surgeries, anguish, lost careers.
Morphine, pain.

Then I learned more.
More about what really happened in those harrowing days before and during NF.
A medical detective, sorting through my file.
Slowly facts filtered down to us.
It was written up, this medical detective was angry.

Now I see him, hear about him from my friend all the time.

I am strong, off pain medicines, but usually in pain.
I am strong.
In the near future, another surgery looms.
The "virgin" right leg, never had an operation.
The left leg went through so much,
limping, crutches, scarring, favoring,
The right leg has problems now, as a result.

How long can I live without pain medicine?
Only time will tell.

Pain is in my life to stay.
Doctors are in my life to stay.
The Doctor, as fate would have it, is in my life,
to stay?
To stay.
I will grow from this.
It's called "Post Traumatic Growth".

I can do this. I am strong.
So many memories, where can I put them?
They are coming back to me fast and furious
as I go through my friend's story with her, every day, in that wing, of that hospital.

She says I "ground" her.
I massage her feet and legs,
we listen to interesting and funny podcasts,
My tension rises along with her fever, my muscles (and soul) relax when the medicine works to bring it back down,
I feel relieved when I see her rest.

Now it is she who cannot take care of her child.
I understand on such a deep level, it hurts.

There is nothing simple, or clear about these stories.
Please let me tell them,
Don't be afraid, or feel bad for me,
just be with me.

It's not about anger,
I've shed that entirely. A gift of time.
It's not even about illness.

It's about three souls intertwining.
Four souls... her five-year-old girl.
Light, wise, expressive, happy, dark.
I'm taken by her.

These souls are forever joined.
We may never understand why.

Now I have unburdened my soul,
and I can continue on being who I have chosen to be.

Thank you all, for being my people.
You ground me.

Fentanyl, Cannabis, and pain

It's been a while. I have written a lot, but not published for general viewing. It's been really tough going.

I am being reminded of the pain I had that made me go on the Fentanyl in the first place. One specific pain has returned that I literally had (blessedly) forgotten about. After I had the surgery to place the mesh under Gapey (July 2010 and thereafter if you want to look in the archive section), I was in so much pain. It was the worst pain I had ever experienced to that day. Worse than the NF. (Maybe not worse than the skin graft donor side for the whole year after the graft surgery, but it's hard to compare)

When I first went to Dr. Davidson in Jerusalem for consultation on pain control, I know that the pain from the mesh surgery was one of the biggest ones I was dealing with. It literally hurt to breathe, and any use of stomach wall muscle. It was only when I finally went on the Fentanyl that I got relief from that pain. Well, it's back. Not as strong as then, but I still am taking some Fentanyl, I'm not off yet. My dose at the moment is 25mmg. I have four more times to lower the dose, which means about two more months of this misery. Yes, pain is resurfacing. Yes, the Cannabis helps, but....

It also makes me uncomfortably disconnected from my brain. Even though it is a strain which has lowered amounts of the chemical that causes the "high" (THC), it still effects me with a high. Even just the one drop I take under my tongue. Please don't take that with a grain of salt and think "how nice for her". It's not. It's not what I want at all. I cannot talk to or take care of children when in this state. I cannot drive. Therefore, it isn't usable. I have used it only at night when I am desperate for my leg to stop bouncing (the RLS). No medicine is usable for me if it takes away my ability to function normally.

So, for now, I am not taking anything to help with the pain. There *is* nothing I can take on a regular basis. My hips are in constant pain as well. I am falling into quite a depression. Not sure how much of that could be a withdrawal reaction (chemically), or how much of it is because of the pain and current situation, but it is awful. I don't look forward to the day, and I am not sleeping well at night. The insomnia is fierce. The Cannabis alone won't put me out, I need it combined with a sleeping pill. Then I am awake four hours later. Pharmacologically induced sleep feels awful in the morning. I have been getting four or five hours of sleep at night, and trying to function normally during the day. Hmmmm, I guess that would be depressing for anyone, right?

I did do something proactive. I made an appointment with a medical doctor who is also a naturapath. He's in Jerusalem. He comes highly recommended by many, including a friend of mine. My diet and nutrition has been atrocious. When I have an appetite, I tend to eat empty things. I have no discipline anymore for anything except weaning off Fentanyl. I have started eating meat again, after two years of nearly vegetarian, because I am not eating well enough to be a vegetarian. I hope that he can help me sort things out with my diet so I can deal with the weaning better and have enough energy. Could improve my mood too, of course. Maybe help my sleep. Diet is so important, and I don't know which decisions are right for me anymore. I am so entrenched in the weaning that nothing feels good. I wake up feeling crappy *every day*.

Two more months of this. Gd help me.