Monday, March 23, 2015

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.

Wednesday, March 18, 2015

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.

Tuesday, March 10, 2015

DETOX

I really like learning Tai Chi. I started recently, have had maybe 5 lessons. The teacher is a fabulous teacher, and I am hooked. it is slow and fluid, and beautiful. I had done some Chikong when I was in Mitzpe Alumot (the raw food retreat I did a few years back), and loved that, too. Tai Chi is similar, but different.

Anyway, Just a small update because I am running around today with kids, gotta leave soon. (Shifra has orthodontist, Azriel has a guitar lesson, Ya'akov is coming in from Jerusalem for a doctor's appointment, Shif & Azri have sewing class, and then Shifra has ballet. Love Tuesdays. Even without the doctor's appointments, there are many trips to make!)

I decided, after dabbling with the cannabis drops a bit last week, that I am going to hold off. Isn't that interesting?

The first time I took it, it helped me sleep, got rid of RLS.
Second time I took it (that morning), I must have taken two or three drops instead of one by mistake You have to use the little eye-dropper to put drops under the tongue- a technique I haven't mastered yet. So, I got overdosed, only after one dose. That was AWFUL. I felt out-of-control of my words and facial expressions, cried uncontrollably, and was generally a mess. I waited most of the day until that effect went down.

What I was crying about was that I am *so fed up* with DRUGS altering- controlling- how I feel. I mean, it is good if you are in pain to get out of pain. And I know that is the goal, but I wasn't in particular pain at that moment, and once I understood that this is another substance that I will have to get used to, not so different than the Fentanyl, I got so upset. I had somehow thought that my body would accept this Cannabis easily, that it would not be something that my body "has to get used to". I know, it was an overdose, not the way things are supposed to be, but this is what happened, and things happen for reasons. I don't want my body to have to get used to another DRUG. I want to be drug free. I was hoping that I could take the Cannabis on an SOS basis for pain, but it doesn't work that way. You have to use it all day every day in order for it to help you. As I go off the Fentanyl, with all the effort I am putting into it, I don't want just a replacement.

I am going to try to go off the Fentanyl without overlapping with the Cannabis. That is what my body and soul are yearning for. DETOX. I have the Cannabis, and have used it a bit since then as well, but not consistently. It helps the RLS, and helps me sleep. That is no small mercy. But, so far, during the day, I don't need it. Thank Gd.

On Sunday, March 8th, I lowered the Fentanyl to 25mmg...
and counting....

Sunday, March 8, 2015

The creepy Cannabis day (and Purim 2015)

I last wrote just before I picked up the Cannabis. I had just gotten news of the licence being approved.

Why haven't I written since? Things are just really hard. And I am so confused. I don't even know how to organize my thoughts enough to write about it all, but I'm gonna try.

The day of the Cannabis training was a very strange day. In the end, I came home with two vials of Cannabis drops (enough for a month), and a lovely Cannabis cream for more peripheral pain.

The place in Bat yam where we were sent is a psychiatric hospital, which neither of us had ever heard of. Turns out it is a pretty creepy place. I was so glad to have Robert there with me, or I'd have been so spooked.

At the entrance to the hospital parking lot (we drove there), we were asked which department are we going to, and stumbled out an answer, not sure if we should utter the words "medicinal Cannabis". The guard caught drift of our discomfort and offered the answer that perhaps we wanted the Cannabis office? Yup, that's the one, Mr. parking lot guard. He told us to go up there and turn into lot 6 (I actually forgot the number of the lot, but I made it up for continuity, so don't try to go there.).

We got out of the car and approached this office. We waded through psych patients, some begging for a shekel or two. That was creepy enough, but then we noticed that the guard at the office himself looked quite stoned. Honestly. He spoke OK, though, and seemed to know how and where to direct us. And he offered to laminate my Cannabis licence. How nice.

We were then ushered into the counseling office. There was a [quite young] lady there, and as soon as we walked in, heavy pot smoke choked us both. Apparently she had done a demonstration of how to smoke the stuff, and the air hadn't cleared. Whoa- I hadn't smelled that particular smell since... well, for the sake of my Mom and Dad who think I am innocent of anything counter-societal in my whole life, lets just say that it was a strong smell. :)

She showed us how to use the oil drops I was to receive. Got my questions answered.
Then we went to the "store" where they sell the different forms of medical Cannabis (smokables, bongs, vaporizers, oils, creams, hemp oil, etc). It was all so foreign to me.


This was no Superpharm.

It is hard to wrap one's head around, coming from a secular background in the US. But, anyway, I was given my vials of oil drops, and a little pot of cream. Or should that be cream of pot?

We spoke at length with the distributor/cashier in that "store". She seemed to be sure that it is a load of bunk to wait until the dosage of Fentanyl gets lower in order to begin the Cannabis. She said people switch to Cannabis *in order* to ease the weaning process from narcotics. She emphasized the suffering that weaning from narcotics can cause (yeah, familiar with that, aren't we...), and that Cannabis is the best option to ease that suffering. She said that I am on a very low dose at this time, many people start Cannabis while on the highest dose of Fentanyl, specifically, because it is such a beast to wean from.

When we were finally ready to walk out, I was worried about the psych patients milling about, hoping they aren't used to people walking out of that office and sharing their new "goods" with them. I was scared of these guys, and they knew now that I have the stuff. Again, bless Robert's soul for a) being with me, and b) buying one of the begging psych patients a "Crembo"-  which are like American "Mallomars", for two shekels at the snack bar. The psych patient was so happy with his new sweet, and Robert found it endearing.

I got home more confused than I was before going.

We also got home, though, to a problem involving a drug addict!! You aren't going to believe this- (I have so much to write about regarding my dabbling with the Cannabis, but it'll come out in the posts following this one- which is a full post already).

While on the road returning from Tel Aviv, we get a phone call from our next door neighbor. When I saw the name on the screen of my cell phone, I immediately thought it was the woman of the couple who live next door to us. They have a 4-month old baby, and we talk babies a lot.
But no, it was the husband. Strange, he never called me before. Something wrong with the baby and the mom? That was all I thought about, but Robert was nervous.

My neighbor asked if I'm home. I told him we're on the road, nobody's home. He then told me that from his window he can see someone trying to break into my house. He said it was clearly a drug addict, high and wobbling around in a drugged stupor. He was clearly looking for money or anything that could get him some more of whatever it is he was high on. We got really, really nervous, although we knew that it is *really* hard to break into our house, for many reasons.

I hung up with the neighbor and called the police.
Then we waited.
Then I called my neighbor back, no sight of the police, and it looks like the druggie went into our unlocked outdoor storage area. Not much to steal there, but it made me realize that the police wouldn't see him if they came to my property and he was in the shed. So, I called the police back to tell him that my neighbor told me that the suspect is in the storage area. Then the police just wanted my neighbor's phone number- no use talking to me if he is the one with his eyes on the dude.

The I didn't hear anything else. I tried calling the neighbor a few more times, but I hung up when I heard the signal for "call waiting", because I didn't want to interrupt the discussion with the police about where the druggie is.

With my heart in my throat, we turned into our street, half expecting to see our house with police cars parked outside it. (thank Gd the kids weren't home!)

Nothing. We rolled up and parked in front of our house, where we always park, and went straight into the neighbor's house- too worried to go into our yard ourselves. The neighbor pointed out to us that the would-be robber is stoned out of his mind, wobbling around, across the street from our house. I got a sight of him. He was so stoned that he couldn't break into a jack-in-the-box if he tried, let alone our steel-locking doors and impenetrable window bars. It was creepy seeing him wobbling around.

My neighbor said the police came, saw him, and didn't arrest him. He wasn't on our property by then. Instead, they sent an ambulance, which is what this poor guy really needed. The ambulance tried for the good part of an hour trying to convince him to come to the hospital for treatment. He wouldn't go. They literally stayed talking to him for around an hour, and in the end, they gave up. He wandered his way out of our neighborhood, and I haven't seen him since. The police said they were familiar with him, and had reasons not to arrest him.

Drugs can be really abused. It seemed like that whole day, round-trip to Bat Yam, from the minute we drove into the psych hospital, until the minute we were safely back in our home, it was an air of something illicit going on. Just creepy. (btw- we chose not to tell the children about the druggie trying to break in. It didn't need to be told, they'd get scared unnecessarily. They get nightmares from these sorts of stories. Just asking that any of you have have regular contact with my kids please not to mention any of this. And yes, I know for a fact that they do not read my blog.)

Medical Cannabis is NOT illicit. The stigma is clearly still present, though. It is a medicine- it is a natural medicine that Hashem gave the world to make use of. It's just that the use can be abused, like so many other things Hashem has given us in the world, or rather, given us capacity to create in the world He has given us.

Having said that, and having tried it three times so far, I am more confused than ever.
I have an inner voice that consistently tells me to get off all meds. Don't wait until my body adjusts itself to another one. Don't take another type of drug. Be drug free, see how that may feel.

Although I am very confused about the Cannabis (more on that, and how it effected me when I took it the three times, in the next post), I am still clear as day that I am continuing my journey off Fentanyl.
I am still plagued with RLS (restless leg syndrome), insomnia, and in recent days, hardcore pain, unlike I have felt in a long, long time. Last night, though, I got the best night's sleep I have gotten in months.... with one and a half sleeping pills, and a drop of Cannabis under my tongue. Slept from 10pm till 10 am, and was drowsy all day. Brain fog descended. Migraine settled in for the night (I have a respite now because of having taken many Excedrin migraine pills). I still have a headache, and need to close this laptop and try to sleep. I know a drop of Cannabis would help, but I am so confused! I'll explain that soon.

In the meantime, I got an earlier appointment with the orthopedic oncology guys, so I can get an MRI on the right hip. I have a feeling the PVNS spread to there, and perhaps that is why the surgery was thrown off this passed summer and never happened. I feel intuitively that my right hip was not operated on at that point, in July, (why the surgery was thwarted while I lay on the operating table prepped and with a gas mask on my face, seconds away from being completely anesthetized, is here.) because we didn't have all the information. That hip has become increasingly painful, on Friday I could barely shuffle around my house my hips (both) hurt so much.

So, I asked for an earlier appointment, and got one. That easy. Sometimes ya gotta fight, and sometimes the universe makes things easier for you. I'm going to them (in Ichilov hospital) next Sunday (a week from tomorrow), come home with an MRI referral, then go back a month later to discuss results. At least, that is the plan now.

As has happened so often since I had NF, I am having another foreboding feeling that I'm going to wind up in the hospital again some time soon. I have this feeling on such a regular basis, you wouldn't believe it. I never talk about it because I know it is the PTSD speaking. I had hidden thoughts that I'd be in the hospital during Purim, and although I was having breathing problems and chest pains (which I chalked up to stress), I stayed home, and we had a *wonderful* Purim!! Here are a few costumes (only Ya'akov's is missing, he was floating around, couldn't catch a pic of him wearing a train engineers hat):
me & Robert, he was King Achashverosh in
the Purim "spiel" or musical production,
that our community puts on each year.


If you can guess what I am, then you are, also!
(hint- the word taped onto my tummy is "highly",
and, what other costume-y sort of thing do I have on?
A cloak, perhaps? What else may a cloak be called?


Smiles drawn on his face, and his real smile.

Dov is very into the deep, philosophical, uplifting
stories and way of life of Rav Nachman. Here he
sort of dressed with a Nachman kippa on, home-made.



Robert and his cousin Howard
 (who was Haman in the spiel)


My deadly leopard

Robin Hood... hand sewn costume by his very own hands!!!

Taking down the next Fentanyl dose tomorrow evening (Sunday).... Gd protect me! I will then officially be down to 25. This, of course, does not take into account that the actual drug levels in my body aren't yet lower. That takes much longer.

Wednesday, February 25, 2015

Cannabis arrives along with Hail, Snow, and Poppies

Can you believe it *snowed* here in Be'er Sheva? Hailed, too!
Things have sure been tough.
This weaning off the Fentanyl is awful. I'm getting there, though, I'm getting there.

After skipping 10 days of lowering a dose because I just couldn't bear to put myself through it yet again, I did it this past Sunday, and am now at 31mmg. That makes only one more dose lowering (in two weeks b'ezrat Hashem) until I get to 25, which is the maximum dose I can be on to begin Cannabis. After that, I can overlap them [if I want], and continue the rest of the way going off Fentanyl, ultimately to completely finished.

And on those lines, there is *good* news: I got approval for the medical Cannabis. Faster than I was told to prepare to wait. It came in three weeks. So, I am almost to the dose of Fentanyl where I can start the Cannabis if I want. I have a "training session", to learn the ins & outs of using medical Cannabis this coming Monday (March 2nd). I have to go to Bat Yam for that (near Tel Aviv). Good thing is, that Bat Yam is where Dov learns, so we'll get to see him after the meeting.

This morning I had two appointments which I had been waiting for for quite some time. One was with a surgeon (which I wrote about in the last post) to investigate the worsening pain in my right hip, and the other was with a neurological physical therapist.

The surgeon appointment was useless. I had to tell my whole story, and he also said he remembered me from the hospital when I had NF. I didn't remember him, though. All he did was check to see if I have a hernia on that side. We already knew there was no hernia there from having done the ultrasound. I wanted him to order an MRI or CT scan to investigate more, and he didn't. All he was interested in it whether it is an immediate surgical issue or not. While it may be, he told me to go see my orthopedist, that from his  point of view (a general surgeon), it's not his department.

The earliest appointment I could make with the orthopedic oncologist is in mid-April. They had nothing sooner. So, I'll wait till then, what else can I do? If it gets worse fast, I'll go back to my GP and see if she has any ideas. I have a theory about what this might be.... I am hoping my theory is wrong. That being that I am suspicious of having PVNS in the right thigh joint. It is not unusual to have it bilaterally, and I have had it in the left, as we know. The strange thing is that the pain I have feels like a mirror image of what Gapey feels like on the left. It goes from the groin to the upper part of my hip, radiating outward. That is exactly what Gapey is (and oh, so much more). I am quite sure it is the same nerve, and I felt this when I had NF (in the few days before they knew it was NF). It is so strange. I remember describing the pain to the doctor, in the days while I was in hospital before the NF was discovered, that it goes to my upper hip. The surgeon from the NF said that he realized, after the fact, that he "missed" the issue of referred pain I was having. I am feeling that same referred pain in my right side now. I understand that nerve path, that is for sure! Strange. Really feels like a mirror image. It may "just" be the impingement getting worse- the impingement in the right thigh I was planning to have fixed last summer, and the surgery got shut-down when I had the allergic reaction to the antibiotic. That issue (impingement) is still there, so maybe that is just getting worse, and it's not PVNS or anything scary or new. We won't know until I have an MRI, and I can't get that ordered until my appointment with the orthopedist in April.

In the meantime, I am trying to juggle all of this with... life. The weaning, the pain, the doctor appointments, the kids, cooking, cleaning, laundry, etc. The weaning-induced insomnia is at it's peak now because I just lowered a dose four days ago. UGH. As I said in the first line, not a very easy time these days.

Cannabis on Monday. I'll write about that afterward. If nothing else, it's interesting, right?

Through it all, we had out-of-town guests today, and I took them to see the famous poppies of the Negev. This, after a night of insomnia and two doctor appointments in the morning, mind you. I'm exhausted, but I pulled through! Had a nice time before the headache hit, on the drive home.

Me, Azriel and Shifra with poppies all around us.
The red flowers are a big festival here in the Negev desert every winter. Can you believe they make a festival centered on growth of red flowers every year?



Wheat fields, too!
peek-a-boo