18mmg! That number taken in a Hebrew numerical sense means חי: LIFE. 18. yah.

**18mmg** ...and holding steady!

Finally, under 20! (Down from 100mmg!!!!)

That is the dose I am at now, which I went to three days ago. 18mmg.

I have a new goal, borne from impatience. I want to aim for total zero... no Fentanyl at all... by Pesach (Passover, in two weeks). From 18 I have three more doses to take off. I won't wait two weeks between them all, I am so out of patience for this. A headache every day is just over what I can handle on a regular basis. I want to do three doses in two weeks, but I'll see how it goes. When it feels right to take off another dose, I will. I'm not going to enforce the two-week plan any more.

I am going to see my GP tomorrow morning. I have some important things to ask her, and I haven't spoken with any doctor regarding the weaning since I started it 5 or so months ago. It's time for another blood-draw, too. I want to talk to her about the constant daily headaches, and make sure she agrees with me that it's from the weaning. How could it not be? Other side effects to discuss, as well.

As for the pain I am experiencing regularly, I am handling it as it comes. Fentanyl is no longer the answer, I just have to handle it. And reach out for help, like from this naturopath I am going to this Wed... I hope he can help with dietary suggestions which could take down inflammation (90% of the mechanism which causes chronic pain is from inflammation), help me with more energy, get my iron up to par (I've been struggling with slight anemia for a long time now, my diet stinks, and iron pills are awful for someone on narcotics- wreaks havok on the digestive system. That was o-u-t.), and I just want to feel like I look forward to the day. Depression holds a dark cloud over that feeling of looking forward to getting out of bed. I just want to be OFF the Fentanyl already. I've had no real monitoring since I've started this, but I haven't really needed any. It's good that I will catch my doctor up on what has been going on.

With the holiday which celebrates freedom from slavery, I pray that my personal freedom will be granted me by being off the fentanyl. That is one slavery to which I can happily throw off the yoke.

On this Pesach season, tell me what your personal freedoms may be. I'd love to hear them.

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.

The usual: pain, surgery, medicines. Who *IS* this person who used to be Sarah?

I am supposed to see my orthopedist on Wednesday in Tel Aviv. I honestly don't know what to say, or if I even should go. I mean, he's an orthopedic surgeon. If I am not going to do surgery, then why go to the appointment?

I am the one who initiated the appointment, I scheduled it about a month ago. At the time my left hip developed a new "twang" in it, every step I take. The "twang" was awful, and it lasted a few days straight, *every step*. Can you imagine how annoying that was? It didn't hurt more with each step, but it made more pain at the end of the day. So, the twang kept on for a few days, then faded back into the scenery. Now I get it occasionally, and it is **SO** mega annoying. I have a feeling it is something like a ligament stretched.

The right hip- the one I almost had surgery on in July but it got canceled when I had the dramatic allergic reaction on the operating table- that one- hurts so much now. I feel it more now since I am lowering the dose of my pain meds. It is the right one which hurts consistently more now. But again, if I am not going to do surgery, why go to the orthopedist?

I just had a little conversation in my head that went like this:

head: well, you probably should go back to him because things were left up in the air last time when you saw him, having allergic reactions on the operating table. That was the last time you saw him.
me: true, but it's not like he is wondering what happened. He doesn't give my case any thought until my file is in front of him at my appointment. It's not like his office gave me a follow-up appointment or anything.
head: But you are really not sure if you should do the surgery or not.
me: So I'll go to him when I am sure; if I decide to do it.
head: just go. Ask him about the new twang, if it is something to check into or not. Tell him about the allergy testing and the cellulitis that followed. Maybe you need a new MRI to check out the twangy thing,
me: I just had an MRI in August. It's not time for a new one. There is no point in going unless I am going to reschedule the surgery. That's all he wants to know.

With that, my head got quiet.

I am not having much patience with this medicine lowering. In order to start the new medicine, I am supposed to go way down from the one I am on now. I take 75mmg now of Fentanyl, and Dr. D said I should be at around 25-40mmg in order to start the new med. That's a lot of lowering dose and uncovering pain.

Maybe I should try to be patient and just do this one thing- concentrate on lowering the dose of the Fentanyl. A little bit every two weeks. Why think of surgery now? I'm not really considering surgery, but maybe I should go to the orthopedist just for a follow-up, after things were left in July sort of hanging in the air.

A tiny part of me *is* considering surgery, though. It friggin hurts, this problem in my right hip joint. Less pain meds will mean it'll hurt more pretty soon. If I do the surgery, then maybe it will be less painful overall in the scheme of things going on with me. Ah, who knows.

I am still not sure if I'll go to the orthopedist. Ill let ya know.

Changed my mind.

I don't have a report for you about the visit with Dr Davidson on Wednesday because I decided to cancel. Yes, the magical appointment that I was given within three days of requesting it, it seems, was for purposes other than what I thought. Isn't that interesting?

Now I think that the timely appointment materialized because it was a good way to get me to think fast and make important decisions to stay on my path. My purpose of making the appointment to see Dr. Davidson was to get put onto a different pain-control regimen. I soon realized, however, that that decision goes against the decision I made during Rosh Hashana to go off my pain meds and see where my body is, regarding pain. That blog post is here.

What was happening when I wrote about the heightened pain, and made that call to Dr. Davidson, was withdrawal. It was the week I had cut out a small dose of the Fentanyl. There are side effects of doing that, which fool me into thinking that what I feel is permanent. One is **extreme** fatigue, like that under-water feeling I described previously, that I couldn't get out of bed no matter what. Next side effect is heightened PAIN. This has happened a few times already, each time I cut a dose of the Fentanyl, the pain gets really bad, alarmingly quickly. Not usually the first day of the dose lowering, but starting on the second or third day. This is extremely hard to sit with and wait for it to blow over. When I feel strong pain, I can't think clearly to reason that it will probably blow over. I jump to: No! This is unmanageable! I must be released from this pain or life as I know it will be forever changed. It's scary, you know? But if I wait out that first week after I've lowered the dose, my body will adjust, and I am again left with the levels of fatigue and pain I am more familiar with.

That is what happened between last week and this week. I feel more balanced now, within my unbalanced sort of life.

So, I am going to "stay the course" as one U.S. president was famous for saying (in his case, though, the course needed to be changed!!). I am going to make the next small cut of dosage starting on Sunday. I am not looking forward to it, but I am committed to trying to be narcotic-free.

I had week-long amnesia toward my goals. I suppose it's because I didn't know what to expect, and it was all very scary- the unbearable exhaustion, the heightened pain. Now I know that it lasted a week, and then my body leveled out, thank Gd. I don't want to do this to myself for another week, but I will. I want to be narcotic free, or as free as possible.

I wish the power drink that I ordered was delivered on time. It was supposed to be part of the plan to give me the energy I need during withdrawal. It was delivered to my parents house in NY. I specifically told them not to deliver it there, but rather to me in Israel, but they goofed anyway.

Well, there are reasons for everything. We just usually don't know them.

The call at 1am.

December 2010. Almost 4 years ago.

I was in pain- agony- from the surgery where a large mesh was placed in my belly to support my skin graft. I was desperate for pain relief. Robert got in touch with our "Medical Rav", and was given the name of the best pain doctor/anesthesiologist in Israel- Dr. Eli'ad Davidson, in Jerusalem. I went to see him. On this subject, I highly recommend going into the archives of this blog- over on the right on the internet page (under the "Google+" badge, above the picture of me). Go to December 16th, 2010, and read three or four entries thereafter as well. It is all about my experience with this pain doctor. Some of the entries are details of the visit, and which medicines he "put on the table" as options for me, and some are about the trials and tribulations of starting the medicines he suggested.

October 30, 2014, 12:30am.

I had just published my previous blog "Pain, Fentanyl, Whiskey....", and was about to go to sleep. It was a late night. What I didn't expect was to receive a phone call at almost 1am. The person said they knew they were taking a risk, but because I had just published a blog entry, they assumed I was still awake. I was, but kinda risky, indeed.

Anyway, the person who called had a keen eye for what I may have been writing "between the lines" of my previously mentioned blog. They wanted to give me advice, and share with me their own experience of pain doctors. Although the late hour, and very strange call, I was, after a while, grateful for the call. This person jogged my memory about this specific doctor, who I had seen many years ago. I was flatly against the doctor's suggestions (Dr. Davidson) for narcotic pain relief. I wasn't ready to hear it. Now, after reading these entries over, I see that I have tried many of the options which I rejected at the time. I thanked the caller for reminding me about that particular doctor. They may have called at a strange time, and at the beginning of the conversation I almost wrote it all off, but I somehow knew that there was a message here for me, just packaged in a strange way. That actually happens often, I think, when important messages and important people come to us in unusual ways. We gotta be open to hearing what is being said.

Today, November 3, 2014

I called the office of Dr. Davidson, and requested an appointment, the earlier the better. These guys often have a waiting list of month or more until you can get an appointment.

There was a cancellation for this Wednesday... did I want it?

So, Jerusalem on Wednesday, it is. I even got lucky with finding someone to watch the kids for the afternoon, on my first try. That doesn't happen often!

Last time I left his office, I was in tears. I wasn't eligible for the pain control technique I went to him looking for (a nerve block inserted near the spine to numb the effected "pain" nerves. This is a technique which Dr. Davidson specializes in. Why I wasn't eligible for that technique is also written in the blog entries I suggested you read as an adjunct to this entry.)

Let's pray that this time, I leave with renewed hope, and a new path to try to get the pain under control, as well as a plan for how to get off the Fentanyl.

Wednesday, November 5th, 2014.

Stay tuned.......

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.

Weary from fatigue

While things around me, involving me, seem to be going really well, my physical body isn't doing that great. There should be some correlation with good emotional=good physical, but it's not always that way.

Incredibly good news is that Ya'akov's high school yeshiva got the funding it needs to stay afloat and open for this year. We don't know what will happen with next year, but there is reason to believe that during this year the changes will happen that need to happen in order to get more funding from the education ministry. Meanwhile, the threat of his school closing is not hanging over us. This is **awesome**. It is a very special school- the only of it's kind- and I couldn't see him thriving anywhere else. Thank God that he gets to stay there. And it gives me unspeakable inner peace to see him thriving. I am going to Jerusalem tomorrow (Monday) evening to attend a school meeting, and I'll meet his teachers and principal (again). Although it is hard for me to travel, I am going to make every effort necessary to get to this meeting. (Even with the price I'll be paying the rest of the week for this traveling and staying up late at night.)

Other really cool news is that I won an award for my writing! One of the contests I entered a few months back had the results finally publicised, and I won! There were hundreds of people entering their writing proposals, with 28 prize possibilities. I won the 8th, so that's pretty cool! It's the first real approbation for my writing. (Well, the Jerusalem publisher that offered me a contract is also a nice feather in my cap, but I haven't signed yet. It's not the ideal contract, I want to try for a bigger one.) Anyway, yay! This prize is a free two-hour Skype session with a major author/big wig in the publishing business. She can help me with any aspect of writing the book I ask for; it could be writing/content itself, layout, editing, or sharpening up my proposal in order to possibly get a better publishing contract. I'm not ready yet to use her services, I have to home in on what is the best way for me to use these two hours (these people charge $600/hour for their services!),

That stuff totally lifted my spirits last week (after also being high on helping with a birth). At the same time, though, my body started to break down a bit.

In my last post, I started off saying that I have been having the type of exhaustion that gets into my bones and stays there, no matter how much rest I get. Then I had the almost-cellulitis scare. Well, thankfully, there have been no fevers since then. But the extreme, profound exhaustion just keeps on and on, making me feel that I am living my life under a heavy, wet blanket. My body is not rested even after 12 hours of sleep. *That* is unmanageable. Even yesterday, on Shabbat, with guests at our table, I rested in my bed during set-up time (thanks, hubby and [possibly] kids), and when Robert came to tell me that the table is ready to get started, I literally could not lift my body out of bed. It took me a bit, and eventually I did join them, but the dizzy-cotton-head feeling never left. It is my modus-operandi these days. Sarah can be awake but always needs to rest. Any change in schedule- or travel commitments- will throw me off completely. If I am hungry and tired at the same time, tired wins; I'm not eating so well. The fatigue affects everything, and it is cyclical. If I'm too tired to make good food, either eat something not good, or go to sleep without eating. I don't even wake up hungry any more, my appetite is nil.

I made an appointment with my doctor, but she can see me only next week. I want an entire blood panel done, I have to get to the bottom of this.

I did start cutting down my meds. *But*- before you think that the problem starts there, remember that this started before I cut down.
About 5 days ago I took away 6mmg from my dose of 87 mmg. Yes, it made me even more heavily exhausted to the point of feeling sedated, but my commitment to cutting down my meds is very powerful. I will keep the 6mmg's off my dosage, but will not cut down more until the arrival of the power drink which is supposed to help the fatigue. The thankful thing is that aside from the debilitating fatigue, there have been no side effects from lowering the dose (hallucinations or vomiting) like there was last time I cut my dose- but that was cutting out 12mmg's at once.

Along with this inordinate fatigue came another symptom. I believe they are unrelated, but ya never know. My left thigh joint is in trouble again. (The left is the one which had the PVNS, but my last MRI a few months ago showed no signs of the disease returning). It "clicks" like a rubber band out of place with EACH STEP I take. I feel it, each step. It isn't accompanied by pain each step, but I have markedly more pain by the end of the day, in both sides. The pain increase could be due to me cutting the dose of the narcotic, that is hard to know. But the fact that there is a popping in my hip with each step is very disconcerting to me. It actually takes my attention- I *feel* my steps. If I consciously make my steps smaller, it doesn't happen. My steps are already pretty small, though, in comparison to other people. I have an appointment with my orthopedist at the end of November.

Sleeping is again pretty much restricted to my back, with my big pillow under my knees. If I turn onto either side, pain wakes me up after a little bit. :(

In general, I'd say I'm not doing so great, regardless of the good things that are happening in life. The fatigue... it is so depleting. I have no problem going to sleep early, as my New Year's resolution sets out to accomplish. Getting up is the problem. :(