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!

Thursday, February 19, 2015

Intense sleep-deprivation (and a surgical consult coming up, to boot.) Long post, make a cuppa tea.

There have been some very good days, and some awful ones. Mostly, I am very, very tired. I haven't gone down another dose in over two weeks because the last time I did it was so difficult, I am honestly scared to do it again. I will, but I don't want to. I really wish I could hide away from life the first week of a dose lowering. But, life needs me in it, no matter what other personal work I am doing in the background. The plan is to do the next dose-lowering on Sunday. I just want to be off this Fentanyl already. On the one hand, going slow is necessary, and I am doing that, and on the other hand, I want to be free from this stuff.

The nights are the worst. I battle insomnia and restless leg syndrome, and they both are enough to make someone honestly go crazy. Both effects of the weaning. I don't get much sleep at night, and am sill trying to get up in the mornings before the entire morning goes by. I dread nights. They go like this: I am extremely exhausted, have taken sleep medicine, and I lay awake for hours. Take more sleep medicine, and if I'm lucky, I doze off. I don't automatically go for the two doses of sleep medicine because I don't want to change one medicinal dependence for another.

If I have restless leg. I don't know how to explain it, it makes me so crazy I honestly want to just scream... jumping out the window has come to mind. Not to kill myself, just to have a distraction from the restless leg- that is how annoying it is. I can be almost drifting off to sleep, then bleep-bleep-bleep-bounce-bubble-ants crawling up my nerves.... my leg starts jumping around on it's own. Then I'm up and searching frantically for a solution, where there isn't one (I try Xanax, sometimes it helps, sometimes a leg massage helps, but nothing *really* takes it away consistently). Robert has also been looking for sulotions, but I don't want to introduce any new meds now. I've even tried sleeping in my very tight pressure stockings I wear for flights, and it didn't help.

Waiting for the approval for the Cannabis. That will change the whole structure of my night. I will soon check with my neurologist to find out if he can give me an updated time table on that. I wish I didn't need it- I want a drug-free life. I want it more than anything. But, I need decent night's sleep, and having been through all I've been through, it seems, for now, my body does not know how to calm down enough to do that. Oh, I should listen to the meditations I've done in my course- I forgot about those!

It's a far cry from a year ago when I said I couldn't not sleep. I would need 12-14 hours a day. We all remember that. yes? From one extreme to another. All because of the Fentanyl.

The woman who does my lymphatic draining every week (Dianna with a beautiful Argentinian-accented Hebrew) told me to drink two cups of soda water a day and it'll go away. Sounds like a "bubameisa" (Yiddish for "grandma's tale") to me, but I'm willing to give it a go.

I'm So Tired. 

I'm not in much pain, though, interestingly! The one thing I was most worried about hasn't happened.
I'm having lots of good time with the kids, making healthy foods, being with them all afternoons. This is the first year I have no helper at all- no nanny, babysitter, no help with the driving, nothing. The kids are old enough not to have a babysitter anymore, thankfully. I've just been very "present" with them these days. There is still way too much driving on my plate, but I am handling it.

I can't even write more I am so tired. Gonna close my eyes....

(Next day now.... Thursday.)

Another horrible night. Slept from about 4 [I think] until 11. It feels awful, and depressing.
The problem is that I am so profoundly exhausted that I can't even read when I have insomnia, I just lay in bed, with my [pink, silky-soft] eye shades on, half conscious. I wish I could be productive during that time, but no chance. My mind is mush.

Life is very, very hard when sleeping is thrown off. I have learned not to underestimate that. The effects seep into every aspect of life. Every Aspect. Been getting many more headaches, too. :(

Next week I am going for a consult with a surgeon.
I don't know if you remember, but last summer when we were on our vacation up north, something in my right groin area started hurting with stabbing pains. I thought I had another hernia- couldn't imagine what else it could have been. My doctor ordered an ultrasound, and all that was seen was enlarged lymph nodes (it was a few weeks after the cellulitis hospitalization from last summer), which is when I started to go for lymphatic draining. Well, that pain still comes and goes. A few weeks ago, though, I woke up with it stabbing again, acute, like the first time I felt it. Doubled over in pain. I happened to have an appointment for lymph draining the same day, so Dianna (lymph lady) tried to work on it. She could barely touch it because it made me jump with pain. Turns out that she is sure it is not lymph-related. It is some part of anatomy which seems inflamed (sometimes I feel it radiating out, as well). I went back to my doctor (GP) and she checked it again, and agreed that it's not lymph nodes. It's some sort of inflamed ligament or something. She said she wants a CT scan of it, but she'd like a surgeon to look at it first, and have the surgeon order the CT. She said that if she knew what to suspect, she'd order the CT. But, since she (my GP) has no idea, she wanted a surgeon to have a look. We're talking about the right side here, the "unaffected" side (which actually carries many effects, but was never operated on).

So that is the 25th of Feb. I don't recognise the name of the surgeon, and it isn't at the hospital, rather at a clinic, which is good. I'll let ya know. Another weird, inflamed, unknown thing hurting me. Boohoo. I tried to ignore it for months, I always fear over-reacting about every little thing, but it is giving me stabbing pains again, so my body is telling me not to ignore it.

(This, because I don't have enough on my plate, Hashem? Really?)

OK, I gotta rest- I have a migraine coming on, which I pray will go away with the medicine I took, because we are going out tonight- all six of us!!! We are going to an English theater performance of the oldie-but-goodie "Fiddler on the Roof"! We splurged on six tickets so all the kids could see it. We had to explain the whole story line, the kids having never heard of it. Live English theater is a rarity here! Looking forward- but please, Lord, take away this migraine.

Tuesday, February 10, 2015

About withdrawal and God.

I'm still doing it.... on course with my withdrawal from Fentanyl.

The first week is awful, and then I can deal better the next week, then we go around and do it again. My sleeping is medically induced because of the insane restless leg syndrome which is a result of going off the Fentanyl, but at least I am sleeping.(-ish)
In some ways it is getting harder each time because now it is playing with my emotional balance; making me quite unbalanced. I have days of crying now for no known reason. Only in that first week, though.... so far.

I don't need to go into any more detail. I am staying with the program, and I have TOTAL faith that everything is in the right place at the right time. My body has been toxic for a long time. I'm dropping the doses much faster than I went up. It takes however much time it is going to take. I will have the Cannabis when I will have it. For today, that is enough.

The piece below is purely beautiful. It exactly speaks my language as to how I feel about God. It is about how we can, if we want to, just trust that there is a God. God is not a thing. God is not over there, or in existence, rather *is* existence. Torah teaches us that God is the space, the place of the universe, the Soul of all Souls. Torah says that there is nothing *but* God. So where are we? Just an illusion? We exist within God- we are facets of God. As a rabbi who I once learned with (Rav David Aaron) explained, there is none but "the One". We are part of The One. We are SomeOne.

I am a doula. I love everything about babies and bringing them into the world. It is miraculous. They go from growing in a small "god", and literally get born into the existence of the bigger God. It is mind-blowing when you think about it. This piece says it for me. Enjoy.

(I don't want a whole ideological discussion here, or a debate about whether or not God really exists, I just want to share something very, very special to me.)


In a mother’s womb were two babies. One asked the other: “Do you believe in
life after delivery?” The other replied, “Why, of course. There has to be
something after delivery. Maybe we are here to prepare ourselves for what
we will be later.”
“Nonsense” said the first. “There is no life after delivery. What kind of
life would that be?”
The second said, “I don’t know, but there will be more light than here.
Maybe we will walk with our legs and eat from our mouths. Maybe we will
have other senses that we can’t understand now.”
The first replied, “That is absurd. Walking is impossible. And eating with
our mouths? Ridiculous! The umbilical cord supplies nutrition and
everything we need. But the umbilical cord is so short. Life after delivery
is to be logically excluded.”
The second insisted, “Well I think there is something and maybe it’s
different than it is here. Maybe we won’t need this physical cord anymore.”
The first replied, “Nonsense. And moreover if there is life, then why has
no one has ever come back from there? Delivery is the end of life, and in
the after-delivery there is nothing but darkness and silence and oblivion.
It takes us nowhere.”
“Well, I don’t know,” said the second, “but certainly we will meet Mother
and she will take care of us.”
The first replied “Mother? You actually believe in Mother? That’s
laughable. If Mother exists then where is She now?”
The second said, “She is all around us. We are surrounded by her. We are of
Her. It is in Her that we live. Without Her this world would not and could
not exist.”
Said the first: “Well I don’t see Her, so it is only logical that She
doesn’t exist.”
To which the second replied, “Sometimes, when you’re in silence and you
focus and you really listen, you can perceive Her presence, and you can
hear Her loving voice, calling down from above.”

(apparently an unknown author, if anyone finds out who to attribute it to, please let me know.)

Friday, January 30, 2015

Dialogues with a scissor

Night one of next lower dose of Fentanyl: I'm supposed to go down 6mmg every two weeks. Last time I wrote I told you I was at 44mmg.

Tonight, my scissor reluctantly, and with trepidation, in a quick, calculated yet so slight move, sliding one more line on my cardboard guide, cut off another 6mmg.

What will 38mmg be like?

Tuesday, January 27, 2015

Actually, I do need you... for prayers.

I finally went onto the internet to find out what others are saying about withdrawal from Fentanyl. It's all there... everything. The loss of appetite, hair falling out, and most telling of all... INSOMNIA and RLS.

Many people reported terrible insomnia. That is where I am now. It is almost impossible to live with, but I am. I am praying and praying that it will end soon. But then I have only to look forward to going down another dose of Fentanyl and doing it all over again. It is hell, I gotta say. Not sleeping properly is hell. I am dizzying tired all day. The world is one big blur. I am only going down by little doses, and it is so hard. I am now at 44mcg. I have to get off this poison!! At this point, it is a little imprecise how much of the medicine is getting in me- I am cutting patches. I have a 50mmg patch which I have divided into about 8 sections so I can take off 6mmg at a time. I made a guide of a piece of cardboard which I use to cut the patch each time, but I never really know how precise it really is. It is as precise as I can do it, though. This was the doctor's advice.

During the day the tiredness is unrelenting. I am going to start these energy shots and see if they help. I got a lot of them when my brothers came from America for the BatMitzvah. It is time to start them, I have to do it at a certain point every day in order for it to be effective. My head is so blurry, I sometimes think I shouldn't be behind the wheel of a car. I don't have anyone else to do it, though. I am careful, and wouldn't drive if I really felt awful (I have, in the past, asked friends to drive a child here or there if I felt it wasn't safe for me to drive). I truly wish I had someone to work for me to do the driving. But, I don't, and I will make it through this. I have made it through harder things.

I realize I don't need a sleep clinic done, I just need to get this Fentanyl out of my system. It takes a long time, from what I am learning. The drug stores up in your fat cells, so it takes a very long time to seep out. People recommend going to saunas- dry heat. I'd love to.... I'd love to swim sometimes, too, but I don't have that luxury. There is a gym with a pool tauntingly nearby, but no way is that in our budget these days. Also I think it is not recommended for people who have lymph edema.

I gotta slog through it like anyone would have to. No breaks here.

Makes me wonder if I should even deal with going onto the Cannabis. I don't want any drugs in me. My pain is actually *better* since I have been withdrawing from the Fentanyl. There is always an initial few days of heightened pain (always in my hips, but just one at a time, not both at the same time. Interesting, right? They both have different issues that cause pain, so different nerves are triggered at different stages of drug withdrawal. Who'da thunk?) So the heightened pain lasts three to four days. I can deal with it, it's not too much pain for me. But the insomnia... that is close to unbearable. My kids need me afternoons. Thank Gd I only have two home during the week this year- my older boys are learning outside of Be'er Sheva in different yeshivas and come home on Shabbats. But having to take care of anyone besides myself *at all* is heavy for me in this condition.

Pray for me that I can endure all this. Each lower dose comes with more of this sh*t. My doc says to lower it every two weeks. That is about 6 more times. That's a lot.
Don't count, Sarah, just do it.

I am asking for your prayers for my strength to get through this.
Sarah Rachel Bat Tova.

(Meanwhile, I have thankfulness for the good in my life. The other aspects of my life- my family- are doing awesomely. My kids, thank Gd, are excelling in their own ways. Nobody is in crises, everyone is in the right place at the right time. It is really an awesome time for us, Robert & I have talked about it. I want to write more about my kids and what they are accomplishing and who they are. Maybe when I get out of my own skin enough, I can tell you more. But, thank Gd, the family is doing well. Thank the Good Lord.)