It's just too much pain.

Ten Years.

Some people grow stronger from suffering, and some grow weaker. I've had so long to deal with it that I am both stronger and weaker because of it.

Today I feel weaker. Today the pain is winning. Honestly, how am I going to get out of this situation?
Plow through it and put on a strong face and just try to get back out into life? That's what I try to do. There have been days that the pain was better.... they really did exist. Two or three of them, not in a row.

But I am growing weaker from the fight. Weaker in spirit as much as body.

I want to do things, I want to do yoga, get back to my Tai Chi, LIVE. I want to be in life.

But the pain stops me. It's just too much pain.

Dr. S is still forming theories about what is going on. I've had 4 treatments with him. He thinks that there is an issue going on with the stomach wall/subcutaneous nerve entrapment syndrome, and also possibly a digestive "biome" imbalance as well. That means some of the bad bouts of diarrhea I've recently had, combined with other signs are saying that the digestive system is angry, and possibly putting pressure on the inflamed/delicate abdominal wall issues making things worse.

In short, it's all a shot in the dark. No "for sure" diagnosis, but a theory of a confluence of things happening. But it started very suddenly, not like a confluence of things gradually happening. I am so confused about what the heck is going on. It started in early September. One day I lost my appetite, the next day the pain started, and I started going to do tests. I thought I had a UTI, but alas, nothing that simple showed up on any tests.

Now, four months later dealing with the SAME PAIN, and I am really losing my sense of where to go, what to do, how to deal.

I made an appointment for this coming Tuesday to see the anesthesiologist/pain specialist that Rav Fisher recommend I go see. He does pain control with nerve blocks/long-term epidurals and the like. I actually saw him about 7 years ago, when the pain in my belly was also horrendous after the mesh surgery. He said at the time he couldn't help me, I had too many different types of pain- deep tissue, joint pain from the PVNS surgeries, and superficial sensory nerve problems, he felt he couldn't address it all. That was this post.

But maybe it's not a good idea to numb the pain-- maybe I need to know there is something wrong-- pain comes to tell us something. It's just been four months of this torture, and anesthesia sounds pretty good to me right now.

The other thing going on is that I am going to start translating my recent medical records (regarding this pain, not *all* my records) to send them to the Mayo clinic in Rochester Minnesota. They are well known for talented diagnosticians, and I think if I can't get any answers here I need to go there. It could be months before they give me an appointment, and I should have it as a back-up plan if all the treatments I am trying here aren't working. I'd have done it already, but I have gotten lazy about my desire to translate my medical records. But I have to do it. We found out from our insurance that they wouldn't cover very much of a diagnostic visit there, but we'll work out those details later. Maybe the Mayo clinic has a sliding scale for international patients, we'll see. First I have to translate and apply.

In the meantime, I did manage to: have a pre-natal meeting with a single pregnant lady who is very scared (recently divorced), and I hope to continue to support her through her birth, drive to Jerusalem yesterday and have a meeting with the rav who is Rosh Yeshiva where I learned- Midreshet Rachel- to talk about life, and how to deal with my crisis of faith. I also visited with Ya'akov and got him dinner, then went to Dr. S for a treatment. Today I have a lot of pain, though, like I already said. I don't know if the treatments are working.

I'm not going to write more about the despair that happens if I let myself go there. I saw a bit of it today, and it's not good. It can spiral really fast. I don't understand why I have to be in this much pain, and it's not for us to understand.

Just know I'm not doing well, and I would love visits and calls as much as possible from friends. Even a text here and there help. It's hard and very isolating to be in pain all the time.

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.

I'm getting lost

Wow, things are really tough and confusing these days. It's like picking petals off a forget-me-not daisy... I'm healthy, I'm healthy not, I'm healthy, I'm healthy not....

For me to feel too weak and dizzy/light-headed to go to our community Purim feast, missing it for the first time *ever*, something is really wrong. I just don't know what. I also missed the reading of the "Megillat Esther" for and by women, which I go to every year. This is *not* me.

Symptoms:

recent ones:
incredible weakness- uncharacteristic of me
dizzy/light-headed
decreased appetite

ongoing unsolved issues:
increased migraines over many months (about 5 a week now)
a chronic cough and chronic sore throat for three months

My recent blood tests are normal.

I feel that I am going crazy. Because I have had all the health problems I've had, this stuff could mean to me that something is seriously wrong with my health. The going crazy part is that nothing wrong can be pinpointed. Although I haven't done much in the way of diagnostic tests, just a few blood tests.
I don't want to go to a doctor to investigate without obvious clues. And which doctor? And what is the definition of "obvious clues"?

My GP: she will do obvious; blood tests and send me to someone else. Fairly useless.
Neurologist: he will focus on the migraines, sleeping problems, sleeping pill issues
Vitamin doctor- focus on adding more things to a vitamin/nutrient regimen

Then there are all the specialists, "non-conventional" medicine, (all the "-ists": reflexologists, accupuncturists, nutritionists, naturapaths (I know that's not an -ist...), it's a never ending list) valuable in their own specialty, but for me one big blur of "I can help you to feel better". They all have their own focus, and I generally don't go to any of them. You could literally go broke finding alternative specialties that help, maybe, for a while. It's not just the money, it's an outlook... go to another specialist and they know the tricks to help your life. I think that is why I haven't followed up much on these symptoms except for Dr. Litman, and I'm not sure if that is right for me, either. I can't stand putting stock in doctors. And none of the non-conventional stuff is covered by insurance, and it is all insanely expensive.

Thing is, I know how I feel when I am well, and this isn't it.

In short, there are a zillion ways to look at health issues. I have been to many specialists, and they all have something to add to health, but I am left with a question mark. I don't know what to do or who to go to. That's why I haven't gone to anyone. Well, except Dr. Litman the orthomolecular doctor (vitamin/nutrient supplements). I'm not even sure if what I am experiencing has to do with some of the stuff he has me on....

A few weeks ago Dr. Litman recommended that I take huge amounts of vitamin A in order to knock out the cough that I've had for three months. He said that it is highly effective against these coughs that seem to be going around the country this winter. So, OK, I did it. It was supposed to be for one week, a really high dose (50,000 units a day). Problem is that I wasn't really counting the days... I wound up taking it for two weeks instead of one. It is toxic at those levels. I started feeling really awful... not sick, but just not right. My head felt all cottony, and I was constantly dizzy. It was Robert who thought to ask if I have finished the vitamin A or not. Oops... I was slowly poisoning myself. Not a good idea. Good thing is that when you stop taking it, the symptoms go away. I'm much better now. There were a few days there, though, that I was really not good, and couldn't pinpoint what was going on. It was so bad that I had to go to bed all Shabbat two weeks ago. That's scary.
But, it was because of my not following directions strictly.

Those feelings went away a few days after stopping the high doses of vit A. Then the symptoms came back, like now, even though I'm not taking the extra vitamin A anymore. I am dizzy, light-headed, weak, fatigued. Chronic cough, chronic sore throat (which is very sore today).

It is so confusing. Am I healthy or not? I know it's not that black-and-white, especially not for me with my background. I am waiting this out because I don't want to go to doctors for something not clear or specific.

It's getting very depressing. I need to do something and I don't know what to do.
Of course I wonder if I am getting a brain tumor, or diabetes... we all jump to the scary stuff.

I am lost and confused, and not well, and don't know why.

I sprung a leak

My spirits are plunging. 

For all you who have recently asked me how I'm doing lately, you probably got some version of this: "OK, up and down, good days and bad days, pain minimal, tired a lot..."

I really do try to keep on the bright side. I know this is going to pass into easier times. It always does.

But my spirits are crashing.

I was hoping it wouldn't happen this time. I generally have a good perspective, and went into this surgery knowing that it is for a good goal, to be as out of pain as is possible.

My kids are doing great. My husband is fraying at the edges with almost all of life's details on his shoulders. People are helping out in generous ways with their time and energies driving my kids hither, thither and yon.

One problem is that the physical therapy hasn't started yet. National health insurance is dragging their feet, and it is way past the time I was supposed to get started. Orthopedic surgery is such that if you don't get started with it at the right time, you wind up not optimizing the positive effects of the surgery. I call the health clinic every day, have given in all the necessary paperwork, and the request is "being managed". I was told today that it does have the red flag of "urgent" on it. I'll just keep calling. I need that movement, though. I need inspiration.

I have been doing some exercises myself, I've had this surgery before I know what it needs. But I haven't been doing it enough. Probably because...

my spirits are crashing.

I have been going out, walked the dog a few times, even went shopping with Shifra yesterday for a few necessities she needed (that took hours longer than planned, thanks to a cashier who was unable to make both lobes of her brain work simultaneously).

I am getting around. As I tell people, pretty minimal pain. No pain is the hope.

It's only three and a half weeks after surgery, I tell myself. Chill out. It's all going to be OK.

Rainbow in Mitzpe Ramon, taken by Robert

I have a few close family members who haven't been in touch, and who, I am left to believe, view me as weak, not pulling myself up by the boot straps after NF, and volunteering for needless surgeries. They don't read my blog, they see it as too negative. Once, one of the people I am referring to asked me why I don't write about good, happy things in my family? Perhaps about Emma, our dog?(I'm serious). When I referred to some of the numbers of readers there are on the blog, I was told the reason for that is inhuman cyber "bots" who are sent to randomly hit sites all day. 

That view of Sarah, being the one who succumbed to a life of illness, who chose yet again to undergo surgery, who wasn't strong enough of character to keep working at her careers, who gave up,... that view is one which I have to fight off, like a terrorist, like that which sucks out the very life force of a person. And once that life force springs a little hole in it and starts leaking, the pain that accompanies it is greater than the summation of all the physical pain I have endured over these past eight years.

So, when we talk, I will always tell you that things are going OK, I am not lying. What I won't tell you is that my spirit is leaking.

 That doesn't have a spoken voice, only a written one.

Pain. Sleeping pills. Fentanyl. Whiskey. Despair.

Shit. Fed Up.
You can't imagine. You just can't. In this way, I am alone. Completely. You can't imagine.
No, I can't put it behind me, it's in front of my face every [expletive] waking hour of my life.

I am in crazy pain today. Oh, and yesterday.
A comment comes from someone who really just wants the best for me:
me: I am in intense pain today, I can barely walk.
Person: so, how long are you going to let this go on before you raise your pain meds to what it was?
me: boiling inside. You have no right to say that. You have no idea how it feels. The Fentanyl side effects suck. The pain sucks. Sometimes I want to kill myself to get out of pain. You have no idea.
Person: being defensive, saying sorry, but inside probably curling into a helpless ball... they only wanted to be helpful.

Two nights ago (after returning from a day and a half in Jerusalem), I had a case of restless leg syndrome that felt like every nerve in my leg was firing together, and it had a life of it's own. Nothing could be seen by looking at it, of course. I felt like I'd go out of my mind with nerves going haywire.

I took sleeping pills, didn't help.
I have the Fentanyl patches, no good for this.
At my husband's suggestion, I drank lots of whiskey.

That worked. After hours of suffering, my leg mania finally stopped. I was drugged to sleep,
Problem is that it is bad to combine all that stuff. It amplifies everything.
I was in bed, sleeping, all the next day. When I tried to wake up, it felt like the under water feeling I get when I am just waking up from anesthesia.

Another day, lost.

So much pain today.
Shit, when is this going to end? I am close to the end of my tether.
My kids keep me going.
They help chip away at the useless stone of resentment I have in my head.
I read a story to Azriel tonight, like I do every night. Tonight, though, it helped to chip away at the resentment. I felt it happen. Thank Gd for the angels- the children.

There are new problems happening. I am so depressed about it, you cannot imagine. My legs hurt all the time. My nerves fire at their own will.

I won't kill myself for I am not my pain.
But sometimes, just sometimes, it is so all encompassing that there seems no way out.

My pain doctor (Dr. Z) has me at a dead end as far as changing to another medicine. I have one in mind, and he won't go there. The Fentanyl is eating me alive with side effects. My life revolves around it.

I am only 46.

I have gotten in touch with another pain doctor today. He is new in Israel (here in the south, from America), but not yet part of "the system", so he can't prescribe, and it will be a while until he learns the ropes. I'll see what he thinks. It's just that he's not in the system. I need someone who works in the health care system to be able to change meds. But I'm going to talk to him anyway.

Despair.