Medical inventory and other stuff

As I sit with my laptop I realize I am writing fewer and fewer blogs. Life has gotten to that even keel that I always prayed for when things were crazy. When I was sick all the time and going through hoops to get the health care I needed. There were some very very crazy times in there, we all know. I see other people on my NF support group going through it all now. I'm telling you, this reconstruction surgery I had four months ago was like magic. I feel so much better than I ever felt physically since I had NF. I still get twinges and pain from the surgical areas of muscles, though. It reminds me that I'm healing still. This week I thought I had a UTI (urinary tract infection). The urine test I did at the health clinic showed possible signs of a UTI, so we decided to do antibiotics. It was a one shot antibiotic that is supposed to cover you for three days, specifically tailored for UTIs. But then yesterday we found out that the culture came out negative, so I don't have a UTI. It must be pain from the surgery I guess. I pray I'm not getting more adhesions already; that is partially what caused my two years of pain before the surgery. They do come back after surgery, but I don't know how soon. So we are leaving it alone for now.

My legs are each having their problems... each a different problem. Right leg is suffering terribly from restless leg syndrome. It's always jumping at it's own volition. I can control it if I really concentrate on it, but it doesn't last long. It makes it hard to sit for a long time, including driving. It doesn't interfere with driving, but it is there. The worst part of RLS for me is with the horn playing. I need to concentrate on what I am playing, and the leg is just jumping around. It is very uncomfortable. The worst part is that I can't play with the horn bell on my leg (right leg), I have to play with my horn up, off the leg. That is fine for a while, but I don't like always having to practice that way, it is slightly easier to play with the bell on the leg. But as long as I have this RLS, I can't use the leg for anything. I think the RLS is from a medicine I take, which I recently cut in half, but the cutting in half hasn't made the problem easier. I'd like to cut the medicine out totally, but I have to talk to my doctor about that. I have an appointment in two weeks. In the meantime, my leg jumps. The Cannabis at night helps it to calm down so I can sleep at night, but I can't really take it during the day, it makes me spacey.

The other leg, my left leg which has been through so much, is having big time hip problems. I've had two surgeries on that side, and it's hurting again, like all the time when I walk. I think I need another MRI, but I couldn't get an appointment with my orthopedic oncologist until January! I have to keep calling to see if there is a cancellation, but I'm not likely to do that a lot. It's not an emergency. I pray the PVNS has not returned, that would mean more surgery and a larger problem possibly needing radiation afterward. But I'm going to think positive. I think that the joint is very arthritic and may need to be replaced. I slept with a heating pad on it all night last night and it helped only marginally. Oy.

I am going to be starting to learn jewelry making soon! With soldering and everything. It is a program that I can choose based on my "sal shikum" which is rehab for after my hospitalization last winter/spring in the psych hospital ("The Center for Mental Health"). It's most likely going to be short term, until I start the mechina program which will lead me into another career field. It'll be interesting to learn the jewelry making, and also be a creative outlet for me. I desperately need something to get me out of the house, for the first time in my life I feel bored. Sure there is enough house work to keep me busy every day all day, but I need more. So while I have applied to bituach leumi  (national health insurance) for the mechina program (which is the readiness program for honing learning skills for older people changing careers), it's going to take time before that all goes into effect and I can start. So in the meantime I'll work on jewelry making. Sounds nice, right? I'll even make some money at it, they sell the items we make.

I honestly don't know if I can be a nurse. If I can 1) get through the university level classes in Hebrew, and 2) depend on my body to put in those hours also learning, but also for practical nursing practice. My hip hurts after a shopping trip to the mall with my child, how can I do what nurses do? Unless it was at a health clinic or a private doctor who needs a nurse, that could be easier work. I just have such low self esteem with this all. But my horn playing isn't going to be something I can rely on to play full time anywhere anymore, I've just lost the sparkle that I used to have and the control of the instrument I used to have in my playing. It might come back if I work hard on it, but these days I do practice, but don't enjoy it. I am not at the level that I can enjoy my own playing. It's depressing. And doula work, well, I did take on one client to be her doula in December. That will be a good indicator if I can keep doing births or if I'm left in bad shape afterward. And above all this is that I've always wanted to be a nurse. It fascinates me. I'm just not sure I can do it. But I'm only 51 and have a lot of years to get a new career going, and if I don't do that I'll stay unsatisfied with life. By the end of the mechina program, they will tell me what they think would be a good career path for me based on my work at the mechina. That will also help guide me to what would be the right thing for me.

So along with the weather changing, I am making changes. There are some really beautiful days we are having now, fall is here in the desert. It's a little cooler during the days, and the nights are heavenly. Don't need the air conditioner or the heater. I love that. Let's hope my changes will also be blessed!

building bridges

There have been a lot of holidays happening around here, it's that season. We've had lots of guests and have also been hosted. It's been mostly good, thank G-d. It's been a lot of shopping for food, cooking, setting up, cleaning up, repeat. (...and it's not over yet.)

I've also been practicing horn, and also put an ad out for my birth preparation course. I am realizing I can't just pick up where I left off, there are bridges to build. I put ads all over Facebook, and haven't yet gotten any responses. I'm going to have to work harder on advertising. And as far as my horn practicing... oy. There are problems in paradise.

I always dreamed for the time and ability and health to return to my horn. Well, I have those things now, and am returning to my horn, but I sound *awful* most of the time, and don't enjoy myself playing because I don't have the control of the instrument I used to have. I don't have the range I used to have, or finesse. I know that will come with time, but like I said, I have bridges to build. It's not going to come easily.

Also, unfortunately it seems that strengthening my stomach muscles (for playing horn) after my big surgery isn't going to go as smoothly as desired, either. My lower left belly (where Gapey used to be) hurts when I do any strenuous playing-- like working on my high register. I just can't do it, my surgeon doesn't want me doing anything that could cause pain, and this is causing pain. So I take a lot of breaks, but I'm not sure if it's just a matter of time before the pain will stop, or if This Is It, I can only play horn to a certain extent until it hurts, then I have to stop. It's nothing like the pain I had before the surgery, it's just a little sharp twinge-y feeling. But it's pain and it's here to tell me something. Take a break. It could be that with time this will also go away, I don't know. I hope so. I'm not rushing to any orchestra work, I can't, I don't have my level of playing back. But I would like to get to that level again, some day.

It's holiday season so many things have to wait until all the holidays are over. Seeing any of my counselors has to wait, which means the mechina course I am considering taking has to wait, also. That's the pre-nursing school plan course for five months, to hone learning skills again to get ready to go back to school. I don't know if I'm going to do it- nursing school. It seems almost too challenging for me. My kids tell me I can do anything (they are mimicking back to me what I tell to them when they are discouraged), but I'm not so confident. I told them that I say that to them because they are young and just starting out in life. But then my daughter said back to me that if she was 50 and I was 85 wouldn't I tell her the same thing? Yes, I would.... so why am I not listening to myself? I don't have the confidence that I can do this nursing school program. I don't actually have the confidence that I can do anything these days... that's my main problem. That's the main bridge I have to start building- the one that I believe in myself more.

My sleeping is a bit better, but still not what it should be (and has been up until recently). I saw my psychiatrist about the sleeping problems, and she didn't want to change any of my medicines at all, just suggested to use my Cannabis for help sleeping. OK so I've been doing that, and it has helped a bit, but it's not predictable enough. It kicks in at different times (I'm taking the oil at the moment, not smoking it- it makes me cough too much), and isn't a reliable source of a good night's sleep. I have to keep experimenting with it. I also need to ask my neurologist to renew my licence, it's expiring soon. Anyway, that's what I have at my disposal for the while. I guess it's good not to add new pills, and side effects, but the cannabis isn't so reliable either.

My restless leg syndrome (RLS) is acting up something fierce. It reacts with changes in my medicines, or as a side effect to one of my medicines. Robert and I discovered that RLS can definitely be a side effect from a specific medicine I take, so I decided to cut it in half and see if it makes a difference. It'll take three or four weeks before I know if that's helping.

All-n-all, I'm struggling with self-confidence that I can start up anything these days. That's just the stage I'm at I guess. It's frustrating. I got so sick at such a young age, and stayed sick for so long, that starting up anything now seems too hard, but I'm still young. My days are quite unstructured and aside from taking care of the kids my days are pretty empty. I need to build bridges from where I left off my working days, to twelve years later. Not simple at all. Day by day, I'll get better at this, I hope.

Migraines, camels and pain, oh my!

One week later and I still have the bruise left in my inner arm by the iv medicines for my migraine last Saturday night. It got *so bad*, I could not wait this one out. It was traumatizing by having two so close together which were three days and three nights long. When last week's migraine came, the pain escalated fast, and by 10pm Robert was driving me to the hospital, with me feeling like there were daggers in each eye.

We didn't get home until 5:30 in the morning. What an ordeal. It took two hours before I got the medicines, and the migraine pain kept escalating. It was a busy night at the ER, and I was not a priority.

Then yesterday, barely one week later, I felt another one coming on. My friend from childhood was here for Shabbat, and I was so happy to be with her and her sons, but yet a headache crept in. I decided to kill it as best as I could, I'd take all the medicines that I'm not supposed to take. But what are my options, really? Knowing it could last three more days is just too much. I cannot just wait it out. So when it was just barely coming on, yet I knew for sure what was happening, I took many pills. Advils, Tylenols, and later Optalgins and more Advils. I did not want to wind up back in the hospital, and could not bear to wait it out for another Gd-knows-how-many days. I am nobody's hero by holding myself hostage to pain. The pills knocked it back enough that I got to sleep (throwing in an anti-anxiety medication, also, because I couldn't sleep, because of RLS (restless leg syndrome; a nerve disorder), and I don't have meds for that specifically, but a friend and fellow NF survivor told me he takes anti-anxiety pills and it helps his RLS.

Like that run-on-sentence? I don't feel like fixing it. :)

Sleep (or more precisely, lack thereof) is still a big problem, and I'm sure sleep deprivation may trigger migraines. I'm working on it from many angles.

I did go camel-back riding, though! Like I mentioned before, my childhood friend from NY is visiting, and I took them to the camel farm nearby. Last time I got up on a camel was before the surgery that "fixed" my right hip, and the following day I was in terrible pain. I was hoping, since this time is after that hip got "fixed", I'd be better off. Well, the ride was fun, but near the end (an hour long camel ride) my hip started screaming at me. When you are on a camel, there is nowhere to adjust your position. This one I had to ride out. I tried to move my leg to a different position, but I thought I'd fall off! That would have been bad. So yeah, Friday after that adventure I was in pretty heavy pain, but I rode it out. At least it was having fun that caused it, and not something more sinister! But yeah, I think camel rides are out for me. It was fun, but hurts too much. My hips just are not sewn up that way.

Ya'akov making a friend

My view of the camels... I was last in line!

A cool thing is coming up on Wednesday... I've been invited to give a talk about my NF story at a pharmaceutical company in Tel Aviv! I've never spoken publicly about my NF story, believe it or not. This drug company, AtoxBio is working on a drug to quickly stop NF in it's tracks (if you go to the site, click on "pipeline" to read about their research for the NF drug). They invited me as an Israeli survivor of NF to give encouragement to their researchers, so they can see how devastating NF can be, and how worthwhile their work is. I am going to tell my story. I'm nervous! But excited. This company is going to hopefully put a drug out there which would prevent all the damage I went through, and possibly prevent sepsis (which is what causes organ failure, which I had). The drug is in phase three, which is the last phase it needs before marketing. I'm sure I'll have more to write about after the talk! It's going to be Skyped to their other office in the US, also. I am curious about so much with this, I don't know a whole lot about it. I'll write what I can about it afterward!

I'm still taking Homeopathy, seeing the Osteopath, and seeking out other opinions about the ongoing issue of the infected gland I have near my NF wound. I saw a specialist about it last week, and he is sending me to yet another specialist (I'm the hot potato here again). The next one I can only see in September because we are going to the US, so let's hope I won't have to majorly deal with it while I'm away.

That's it for now. Mainly ongoing treatments, therapies, migraines, and pain, but my mood has been good, thank Gd. I feel I am finally getting out of the horrible depression I had after my mother passed away, and then also my dear friend Sabrina, may their memories be blessed. There is heatwave after heatwave here in the desert, and I am finally able to start seeing the sun. I just beg for long-term relief from the migraines, God. That's what I need desperately.

I. am. narcotic-free.

It started here. September 21st, 2011. Go read it, it's worth the read.

It ended today.
I took off the last half of that little piece of "clear tape" this morning. Fentanyl and me, we are

D O N E .

Left-overs.

I am still having withdrawal. It is unknown how long that will last. I am fuzzy-headed, tired and sleep-deprived because of insomnia all the time. I have to get off the sleeping pills, too. That is my next goal to conquer. I know now that I can do it.

I saw my healer on Sunday (Miriam Maslin), and we worked a lot together to come up with plans and resources to help me regain [more of] my health and strength. I also have a working plan to get off sleeping meds. Oddly enough, I have a gut feeling that I will start sleeping normally when I do. Eight years of sleeping pills is a long time. Enough. Once I get the sleeping back on track, life will be so much easier! It is ****so**** hard to live with insomnia. Life is always out-of-whack, 24/7. I can't even nap anymore. I can lay down, exhausted, but deep sleep does not come.

I will work my way out of this.

I got off of 100mmg of Fentanyl in... what... 7? 8 months? I can do *anything*.

My body will be less toxic. (It already is!) My digestive tract is slowly coming back "on-line" after being assaulted with narcotic pain relief for five years. Slowly. But surely.

And the pain?

yeah, it's there. Sometimes lots of it is there.

We borrowed a wheelchair to get to a BarMitzvah on Shabbat, and I was in pain the whole time. (I danced at my cousin's wedding on Thursday, and my entire pelvis was totally seized up and in pain Friday... could have something to do with that).

The newest question is whether or not I should fix my right thigh or not. Not fixing it means I will live with the pain, as I am now, and as it gets worse I will re-evaluate. Many people have told me, however, to not let these things get worse... it makes the surgery more complicated. My physical therapist said to me yesterday that if it hasn't gotten better in the three years since it was diagnosed, and indeed has gotten worse, there isn't much of a chance for it to get better on it's own, no matter how well I take care of myself and it.

I have an MRI scheduled for the end of June. I plan to wait to see those results and then decide. First we have to know if I have PVNS in either joint. We already know (from numerous MRI's) that there is a tear in the Labrum of my right thigh. That isn't an emergency. PVNS is. So, much like a cancer (but NOT cancer), each scan holds tension and question marks until results are obtained. PVNS is a rare tumor disease in which the tumor(s) grow on the synovial duct- the ducts which bring the synovial fluid (likened to the oil for the joint) around the joint. The disease itself can, Gd forbid, cause one to loose a leg. In that way it is like a cancer in it's destructiveness, but it does not grow outside of the joint, so it is not deadly. (Actually in one case we saw on the internet, PVNS *did* grow outside the joint, but it was an isolated case).

I had that in my left thigh joint in 2008. The surgery to get rid of it is called a "synovectomy", which was successfully done in that year. Then the next year (or two years later? I don't feel like going through the blog at the moment to look for it...) I had another surgery on the same left thigh to fix the tear in the labrum, like I have now in the right thigh. Is this confusing? Yeah, I know it is.

So, the left thigh, with it's NF "hole" (Gapey), skin grafts, massive scar tissue, mesh holding in my innards, and two orthopedic surgeries afterward is often where I have pain. Obviously. Now, without the Fentanyl, I feel it much more sensitively and more often. OK, I can cope... usually (not always, as we saw this weekend after I danced at the wedding). The right thigh only has a tear in the labrum and impingement (the condition is known as FAI). That has it's own steady pain, but different than the left. Fun, right?

All I know for sure is that me and narcotic pain relief are FINISHED.

Whatever the future holds will be guided by Hashem, as it always is. And I thank Him for giving me the strength do this monumental task of getting off the Fentanyl.

I can hardly believe it myself. I'm done with Fentanyl. THANK G-D.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Post-script: I wrote that in the morning... now it is evening, and it's been an awful, awful day. Such strong withdrawal, I feel like I went off a huge dose, cold turkey. My body is in shock. I have brain-zaps, shaking, tremendous weakness and shortness of breath. I am functioning, though. I have been making healthy food for the kids, holding conversations, and driving to activities. No choice, right?

I pray that this will pass soon and I can enjoy my accomplishment. One thing I did enjoy this morning, before things got hard, was this: taking a shower without having to worry about my sponge rubbing off the patch on my upper arm. I have wanted that for a long time. It was a small, yet triumphant feeling.

I am nervous about how the night will go. At this exact moment, my left leg is vibrating and shaking from the RLS. Send up a prayer, if you have one to spare. And thank you, as ever.

Sarah Rachel Bat Tova

The Cannabis saga... and playing dress-up.

So they say that the definition of insanity is when you keep trying the same thing, getting the same results, yet keep trying anyway. It is like your mind keeps saying "this time it'll be right/different".

Well, it never turns out differently!

I am referring to the cannabis oil which I occasionally take to control pain and restless leg syndrome. I think that I have been in denial that I need any medicine at all. I don't *want* to need any medicines at all. Indeed, I am nearly off Fentanyl- just ONE last dose to take away.... at an undisclosed date, meaning I am taking only 6mmg of a patch!!!!! I made it through the last dosage cut. It's been nearly a week of insomnia and other withdrawal symptoms, and the RLS getting more intense. Since I cut that dose last week, my RLS feels like a constant low humming vibration in my entire left leg. Sometimes I have to slam it on the bed if I am lying down because it makes me CRAZY!! You really can't imagine. Doing that doesn't work to end the creepy feeling, just to let out a bit of frustration. Sometimes if I can lie on my left side and put my body pressure on the leg, it covers the annoying niggling vibration going on through my nerves, but then, inevitably, Gapey starts to hurt because I am lying on the edge of the skin graft- VERY uncomfortable. Lying on my left side has a staying-time of about 10 minutes. Then, when I have to turn over because it hurts too much, the RLS is right where I left it before I tried to smother it.

So, yeah, I took the only thing in the world which has the strength to quiet these misfiring nerves- a few drops of cannabis oil. It worked, and I got to sleep, bless the Good Lord. But, as usual, today I have been nursing a medium-pain-level headache all day, and dizziness as a side effect from taking the drops. This species of pot is not the right one for me. I spoke to a specialist (Jane- he is *awesomely* helpful!! How can I thank you?!) and he helped me figure out what to try instead of the one I have. I need one with less THC and more CBD; those are the two basic ingredients which go into medical marijuana. The chemicals, if I understand correctly, come from separate flowers- one species of flower is called "Sativa" and the other is "Indica". They produce different effects, and one needs to figure out where one's comfort level lies, with the greatest amount of medicinal effect for that person's problem. So, it took me long enough, but because of having yet again the negative after-effects of taking the cannabis oil, finally today I got in touch with the company which this advocate recommended, because of their variety of different percentages of each ingredient available in their oils. The website is impressive, and I am pretty sure I will find what suits me for the pain, and the RLS. Gotta pray on this one, that I don't have to go through too many trials and negative outcomes to discover what works best with my body. But then we gotta ask ourselves; what is too many trials? Hashem knows how many trials we need. Gotta trust The Boss.

What I know, is that right now, in bed with my laptop, my leg is hopping internally and externally. You can even feel the disembodied out-of-control vibration if you put your hand on the part of my leg I am feeling it strongest. It's so oogie!! How am I going to get to sleep? Pray. Withdrawal sucks. I am almost done. Just another few weeks of this. But the RLS, according to my research and what the doctors have told me, is quite possibly here to stay. I want a neewwwww drug... (remember that song by Huey Lewis and the News?)

I cancelled the sleep clinic test last week because there was no point in doing it the way my sleep is these days. I will do it when the weaning is completely finished (it's gonna happen! Soon I will be FENTANYL FREE!!!!). I wonder how much worse the RLS can get- nervous to remove the last 6mmg of patch.

So, I hope the new cannabis company will get back to me tomorrow (I just wrote them today) and we can get more suitable stuff for me *fast*. In the meantime, the patient advocate guy who I consulted suggested I cut the oil I have now in half with regular olive oil so it'll be less potent, but hopefully still effective. I'll try that.

In other news, today was a free day that the kids were off school. Nothing to do with American Memorial day, though... it's because it is the day after a major holiday in which the world outside of Israel celebrates two days straight of this holiday (Shavuot), and in Israel we only do one day, with the second day being a play day. So what did we do today? Played! While I was silently dealing with a nagging headache and dizziness, I sat on the floor and played Lego with the kids for a long time, in our pajamas. Maybe an hour? two? Lost track of time. We made all sorts of neat stuff. Then I let Shifra do a make-over on me. Hair, make-up, the works. (she gave me a pedicure on Friday before Shabbat... I still have flowers and sparkles on my toe nails from that!) Then she went into my closet and played dress-up. Dressing me up as well as herself, in my clothes. And she tried to make herself look like me with my brown curly-haired wig and one (or two or three) of my hats. She's such a card! Here are some of the results:

My redhead with my brown curly wig on! My hat! My dress! My earrings! My make-up!
My daughter. :)

Striking a pose

Did I mention she also dragged out the pumps
I wore for my wedding?
She's got [over-sized] style, that one!

I'm grateful that today I could laugh with my kids (all of them with their own shenanigans), sit on the floor to play Lego's and get up without drama, make healthy food for them, and have an intelligent, important conversation with all of us together. Me & Robert began discussing an important (philosophical/political) issue, and the kids got very involved and interested in what we were discussing. It turned into a real educational discussion with the whole family (well, except Dov, he wasn't home). Good things to be grateful for. Gratitude is necessary. I have lots of it. Don't let my complaining overshadow that. :)

Well, the horn works! ...but I broke a bit.

OK, well, as may have been predictable, I overdid it. It was an awesome few days, but- lest we forget- my nights are still really hard because of restless leg. I basically didn't sleep for two nights (the first night was insane RLS and a migraine, second night I ran out of sleeping pills). Somehow I was able to be really productive and energetic during the days, so I went for it.

Today (Thursday), however, I landed in bed. BAD pain in my hip, stomach issues, headache, and dizziness all day. I tried to get up for a bit, but my body was having nothing of it. Slept lightly most of the day. Still am feeling kinda crappy. I do hope, however, to get to Azriel's school tomorrow morning to see the play he is preforming in for "Jerusalem day" ("יום ירושלים"- the day that Jerusalem was recaptured from Jordanian control in the six-day war). He is also going to play guitar- solo!- in the song "Jerusalem of Gold" ("ירושלים של זהב") for the school. Did I tell you he has been taking guitar lessons for about four months now? His teacher says he is picking it up quickly and has talent. :)

I really hope to get there. Dare I say I am going to push myself to get there?

Speaking of pushing myself...

Yesterday, before crashing into bed, I spent two hours working on my stuck horn valves. Well, lots of the first hour was having it soak (without any of it's slides) in a warm bathtub with a few drops of liquid dish soap in each slide to hopefully help break up the corrosion and grease that was gunking up the valves.

It was quite a lot of work after it had it's bath, but my loud cheer of "YAY!" could be heard throughout the house when the last one got unstuck.

Then I [attempted] to play Mozart. Then lots of low, long tones, just to meditate a bit on the horn, and feel my muscles slowly wake-up after their long hibernation.

Then dizziness overwhelmed me, and I flopped into bed as if a crane had dropped me. The two nights of RLS and migraines caught up with me.

I still have problems to solve. My hip still needs a surgical fix, and the pain is quite strong at times. I still hope, soon (the time will become apparent to me, I am sure) to finish off the last few doses of the Fentalyl. I also need to find the right species of pot that can solve my RLS and help me sleep. Then the next project is to get off sleeping pills.

Gapey aggravates me on a regular basis, and the [painful] lymph edema is here to stay, as is the pressure garment. I still need to get the lymph draining frequently.

But, with Gd's help (and a special healer in my life), these things I will overcome.

Today was bleak, but it is within a hopeful framework.

So much has happened, and there is still so much to deal with. All I know is that I am on the right track. What is permanent may never go away. Life is at a new normal- prototype 3. But this new normal is still quite a distance from the desired goals. All I know is that I will keep desiring these goals, and work toward them whenever my body lets me.

Sound OK?

Good night. I'm blown. I need a leg massage- the nerves and muscle spasms are happening. I need the proper form of cannabis to help with that. 

In a conversation with my Rav of many years ago, Rabbi Aharon Batt (ztz'l) when I said to him "it's gonna be good" (In Hebrew), he responded with "it's gonna be better". We are headed for better. I miss you, Rav Aharon. Ayelet, you are always in our hearts. :)

De-bugging prototype 3

Sarah, prototype 3, can never return to prototype 2, but the debugging process can be quite a setback.

OK, no energy or interest in writing a third person narrative today.

Remember when my neurologist suggested I go on "Lyrica" to help ease the Fentanyl withdrawal? Well, I did that. A very low dose, only once a day, even though the prescription was for twice a day. I didn't forget the digestive problems I had last time I was on Lyrica, but I reasoned that then, it was a much higher dose, (I maxed out on dosage), and it was combined with a high dose of Fentanyl. Or was that the Methadone time period? I gotta go back and look it up. The point is, I thought things would be OK this time, with a low dose, and low dose Fentanyl.

NOT.

My digestive tract was (and still is) a disaster. Nothing's working well. (This even with the changes in diet). I decided, on my own with no doctor's visits or advice, to go off the Lyrica. I knew that was causing it. I have experience. The day before the holiday of Lag B'omer- this past Tuesday night- was the first time I just dropped the pill out of my routine. It was a low dose anyway, so no weaning necessary. Sleepless night. SLEEPLESS. My body does *not* do well with stopping medicines. Going on them is just fine, but going off? My body says "you're gonna pay for this, girl."

As most of you know, the holiday of lag B'omer is an anniversary for me... the day I woke up out of the coma. This year, it was OK. I didn't feel a huge need to talk about it, and going off the Lyrica and the sleepless night trumped the anniversary for me emotionally.

The next night, the night of Lag B'omer, we had a very nice barbecue and bonfire in celebration of the holiday. That was Wednesday night. That was followed by another sleepless night. Restless leg is back, I guess the Lyrica had been helping that. Last night, Thursday night, desperate, I don't know if I took three or four sleeping pills- honestly. Restless leg was making me INSANE. I didn't take the pills all at once, mind you- I do have my wits about me. I just kept trying desperately to fall asleep. My system didn't want anything to do with being forced to sleep. I was awakeawakeawake. Till about 5. Today is a total loss.

I WILL get through this. The Lyrica must stay out of my system. The main side effect for me is completely unmanageable. I dread having to start up the Fentanyl weaning again to get off those last two doses. The right time will present itself to me.

Mainly what I realized is that I should try to be proactive in getting the right form of Cannabis. The one I have is clearly not good for me. But I need that help with the restless leg- that problem is also unmanageable. Nothing takes it away, and I cannot sleep as long as my leg is twitching. I think what I have to do is change my provider- there are a few medical Cannabis providers in the country. I need to get in touch with a specialist (Jane- I haven't yet gotten in touch with your suggestion person yet- I was thinking of letting the whole issue drop, but now am changing my mind) and get the type of Cannabis that is good for me. The one I have effects my brain too strongly.

It may seem like tweaking, but, as we know, I am not a computer program. (L.D.- I am reminded of "Sara.h" :] ). Each tweak throws me for a loop, and usually costs a few (if I'm lucky, only a few) precious nights of sleep. And when a night is lost, the day is lost, too. It's not good.

May this Shabbat spread it's healing light and soul over all of the ill and hurting of Am Yisrael, and over the people of the world (especially in India)!

Shabbat Shalom.

Pictures from lag B'omer:

My face wasn't really on fire.... :)

me & my little guy, Azriel

Azriel enjoying the rare chance to be a big brother to a friend's child

Dov & his friends enjoying the bonfire
(Dov is the third from front, wearing the dark tee shirt with the blue lettering)

Vacation pictures, update

I had two near-perfect days, during the family vacation days over Passover!

I had completely forgotten what it was like to feel *nothing*; no aching, hurting, spinning, or just wrong. That feeling of malaise often accompanies much of what I do in my every day life. It is just a regular accompaniment I have come to expect and accept. But, for those two days, I felt *normal*. My old normal- energetic and not hurting.

The week of vacation went very well, but after those first two days of energy, I went way down hill because of all the traveling we did. Too much traffic, too much traveling. I kind of knew that from the outset, that we planned lots of driving, but I sometimes still don't know what my abilities are, at any given time. I had a pretty bad crash, though. Almost completely useless by the last day, when we went to a beautiful beach. I *love* the beach, as you know. I didn't go into the water for two reasons: 1. it was still pretty cold, and 2. my right hip hurts so much these days that I figured the cold water together with the strength needed to stay in the ocean and not get swept away by the current was going to be way too much for me. I sat on the sand, but that was limited, also. Next time we bring our beach chairs.

Here are a few pictures from the vacation:

me & Robert at "Ma'alot" for the day, which featured sculpture making.

me and the ocean... always have been a good pair

me & my littlest guy

Shifra's big silly smile

Shifra, Azriel & Robert

sibling huggie!

just before she exploded out of the sand...

my kids together with friend's kids on the lake in Ma'alot

Shifra doing her own sculpture of her initial

Ya'akov busily carving his statue

.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.~.

So, I've been still trying to find a balance with the medicines. I am still on Fentanyl 12.5 for the time being, and my sleeping is still a problem. It's still completely a pharmacological sleep. Last night I actually mixed two drugs that weren't supposed to be mixed because the restless leg was *SO* bad last night that I was desperate to stop it so I could sleep. If you wonder what RLS is like, picture: just as soon a you feel you can rest, there is a little pulsing feeling going on inside the leg. That pulsing feeling is constant, and sometimes it actually graduates to making the leg bounce- visually. The pulsing feeling is totally crazy-making. It makes me want to jump out the window, or drink heavily, whatever comes around first. The jumping leg makes me move around a lot and stuff pillows all over the place to try to control it, but it can't be controlled except with drugs because it is the nervous system going haywire. It is only in my left leg because that is where everything was cut, grafted, blocked, and sewn back together. Anyway, it is only one of the things that can prevent me from sleeping. Last night I took three different things, including cannabis drops, to try to stop the leg annoying me so I could sleep. Instead it (the medicine combination) just gave me cotton-head and dizziness all night. I'll get the formula right for sleep one of these days.

Since my right thigh joint and something going on deep inside the joint (I feel it) seems to be getting worse, finally (after 7 or 8 months of telling my doctor that something is wrong in the right side) I have a referral for a CT scan to investigate. That pain is like a burning, surging on-and-off pain, right in the middle of  my thigh joint (hard to describe, which is why we have to look deeper). Ultrasound 6 months ago showed nothing except over-sized lymph nodes, but my lymphatic draining lady says that the part she presses that hurts is *not*  lymph nodes. It's something inflamed inside. So, I went to my family doctor (for the 4th time about this specific problem!), and we decided to CT scan it (with contrast fluid in an iv) and hopefully see the problem. Something Is Wrong. I know it as clearly as I know my own body. I am thinking it may be PVNS, and I am also thinking worse.... but I try to kick those thoughts out of my head.

Mostly, especially recently, with the 8th year anniversary of NF coming up, I have been dealing with memories again popping into my head. How do they (my thoughts) know the calendar? The memories are not as bad as they used to be (no nightmares), but that doctor who did the original surgery which lead to NF, keeps popping into my head. Not a day goes by that he doesn't pop into my head for some reason or another. Every day, still. Usually multiple times a day, extended periods if I need to be in Soroka for something (like yesterday).

I ran into him at one point before Passover, and it was so weird. We just passed each other on the pathway, he said "hi Sarah", I said "hey". So much shared history, so much I want to ask him now that I am more intimately familiar with my medical file (and all the mistakes made), so much I want to say. But, it's not possible. Not any time soon, anyway. I wish he wasn't in my head every day. But I gotta accept it, while trying to change it at the same time. The memories may fade (although they haven't yet), but the people involved in the memories are still quite alive, providing me with memories that are visceral, as much as they are difficult.

On Wednesday I go to my spiritual healer whom I used to see more regularly. She has been so helpful in the past, and I need her now again. I had to stop going to her because it was dangerous for me to drive the distance to her town with the high dose of Fentanyl making me drowsy. Now that the Fentanyl is much lower, I don't fall asleep driving any more. In fact, I don't sleep much in general. So, it is time. No more new naturapaths or healers. I'm coming back to my "home-base" healer, from many many years (even before I was sick), and looking forward.

Detox remains one of the hardest things I have ever done. But I am doing it. Tripping on land-mines along the way, but going forward. I need balance and quiet, in my head, as well as my body. It will happen. It will happen.

Reaching the end of my strength

As I reach the end of the Fentanyl, my strength seems to be giving out ahead of schedule. I still am wearing one small patch- the smallest dose without cutting the patch in half- 12mmg.

I went back to Jerusalem yesterday to see the naturapath I had tried to see last week. This was my second trip to try to see him. This time I knew he was in, though, because he had called in the morning (yesterday) to let me know he'd be in and can see me if I wanted. I thought about it for a while, then decided that yes, I'll give it another go. I did get very strange vibes on the phone, but I decided to go anyway because I know he has helped some very good friends of mine.

This would be only the second holistic practitioner I have sought in my almost-eight years of being caught in the throes of conventional medicine.

The long and short of it is that it was a very negative experience. The first mistake, he said, was that he didn't ask me a few questions before I came in, like, what am I looking for? What is my main complaint? He said he always speaks to patients on the phone before making the appointment to find out if he is the person they are looking for. He didn't do that with me, even though we spoke on the phone twice before I came in. He knew nothing about me. He said he doesn't know why we didn't have that conversation.

He basically said that my problems are out of his league.

My main complaint that I put on the table was that I am suffering from insomnia, digestive problems, and intense fatigue as a result of weaning off of narcotic pain medicine. Of course his next question was "what sort of pain do you take it for?". Then I launched into a very condensed version of my almost eight-year saga. I showed him my latest two-page version of my condensed medical history from my GP. I showed him my recent blood tests.

He had never heard of NF!!! Heard of flesh-eating bacteria only in the news, and he he didn't know the medical term for it. Obviously PVNS was also a new one for him. My medical history scared him. I told him that what he is looking at on that page is my history, I don't *have* those diseases right now. Now, I am in need of repair. My body is trying to detox and I am suffering. He didn't hear me, he just kept focusing on the papers in front of him and telling me that my "stuff" is out of his league.

He said my blood tests show markers for liver, kidney, red blood cells and iron to be way off. I knew that. That's why I was sitting there. I practically begged him to look at me as a whole person, not just a sum of my medical history. He said "you are a victim of medical science". Whatever that means.

It stung.

We ended off with him giving me some basic detox dietary foods, and he said he'd pray for me. He also said he'd make a few phone calls to other practitioners he knows to see if he can help me through other people. He didn't take a fee.

I walked out of there (thankfully with a great friend accompanying me!) feeling so damaged and broken.

My friend and I went to a restaurant which we both love, not so far from his clinic, and talked. And laughed.... she always gets me laughing, it's such a gift. We can be pretty funny together. We should take it on the road.

Of course, Murphy's law had it that the rail system that was supposed to get us back to the central train station in Jerusalem was not in operation at the time we needed it. There were "delays". We had to hike large hills to get back to the station. Taxis were nowhere in sight. I wish I had known that would be the case when, upon arrival in Jerusalem three hours beforehand, I chose to walk to the naturapath's office instead of taking the rail. I wanted to walk, it was downhill, I felt good, and my friend was game also. I didn't know that we'd need to walk back the mile or so at the end up hill. Wouldn't you know it that just as we were approaching the central station on foot, the first rail train since the delays, showed up at the same time. I was walking so slowly, and with so much pain, that it took almost an hour to get to the station. By the time we got to the station we caught the last direct bus back to Be'er Sheva. Didn't sleep a wink on the bus (my friend did, so it was a long. lonely bus ride). Got home at 11:30, profoundly exhausted, and in pain.

Insomnia and RLS (restless leg) set in. I was so insanely tired, but the insomnia is ruthless.
I have stopped taking the Cannabis because it was giving me headaches every day, all day.

For a long time now I have been falling asleep around 4:30 or 5 am, and sleeping until about 11. I go to sleep at a normal time, take a sleeping pill, and nothing happens. Take another sleeping pill an hour later, nothing. Sometimes three sleeping pills work, but they are spread out so that I don't fall asleep until dawn. I have never suffered from insomnia, except for when I was pregnant, and that is par-for-the-course with pregnancy. I am loosing footing dealing with this.

I was supposed to see my GP this morning, but I couldn't get up. I plan to go into Soroka on Wednesday to see my neurologist; it's impossible to get an appointment with him, so I'm just going to wait outside of his office on a day that I know he is in. I need to check-in with my medical practitioners; it's been a while, and I am not doing well. I'll see my GP later this week, I hope.

I've been in bed all day. Passover cleaning needs to get done, and I am useless. I couldn't even go to a funeral of a friend/community member today because of it all. I always am there for people in their time of need- especially at funerals. Well, I guess my own time of need is breaking down my door.

PS- the naturapath *did* call today with some ideas of tinctures for my liver and kidney, and with the name of a "healer" who does body work. I'm not sure what that means, and I am freaked out by it all.
He also suggested I take high doses of vitamin e and magnesium.

I just want to turn over and go back to sleep. I am overloaded and depleted.
Four days until Passover. Gd give me strength.

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.

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....

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.)

we are growing apart... I need you less. For today.

I have started writing my next blog entry twice already. Just hasn't felt right. My blog writing style is changing, and I have to learn its changes. We're growing together.

Actually, I am feeling like I am growing apart from my blog a bit, at least for now.

Gone are the days of agony and anguish, many hours and entire days in bed. I do still have the occasional day in bed, but it is much more rare. I do feel the need to give medical updates every now and then, if for nothing else than the chronicling aspect of my health journey. Though of course, each medical trial brings with it its emotional counterpart. That is, if I give emotional meaning to it. I find I am doing that less; giving emotional responses to medical setbacks. It is all commentary to the facts. I can choose to create that commentary or not. Recently- I don't know- like the past few months maybe?- I am just having less running commentary in my head about the medical stuff I go through. So that is why, for now, maybe even just for today, I am going to give an occasional medical update without much commentary about it.

I am learning "mindfulness" training, together with meditation to help chronic pain. This is part of the program that the neurologist set forth for me to help deal with chronic pain, and from migraines. The rest of the program is to start physical therapy with a special neurological physical therapist, and also start psycho-therapy with a medical-oriented therapist. The physical therapist appointments start at the beginning of February.

This neurologist is starting to be at the forefront of my story. I intuitively feel that the program he has started me on is the right direction for me. That, combined with me going off the Fentanyl, is the future of my healing. Dr. Ezra (the neurologist) also agreed to be the one to submit the request for the medical Cannabis, so I will be monitored here instead of having to go to Jerusalem, which is what I wanted the whole time. I just didn't know who the doctor was going to be to do that for me here in Be'er Sheva. He actually tried to send in the request for me last week, but the computer crashed at the website. (I could make lots of jokes about a computer that crashes at the website which is for requesting medicinal Cannabis!) He said he'll do it this week- I will see him on Wednesday when I go to the meditation group.

In short, I will just try to list here some of the medical problems I have come up against lately, but without a lot of commentary about it. It is what it is, right?

1. restless leg syndrome (RLS) getting worse. It is a result of going off the Fentanyl.
2. The solution I found for the RLS was to wrap a heating pad around my leg and I could fall asleep with that.
3. The solution got nixed when we saw that it made my lymphodema swell up terribly.
4. The RLS messed up my sleeping at nights.
5. Even on the nights I don't have RLS, I haven't been sleeping deeply- or at all- almost all night.
6. This has led to increased migraines and exhaustion.
7. I have lost my appetite for some reason, and my hair is coming out in clumps in the shower. Don't know why that is happening, but I will talk to my doctor about it. I feel that the sleeping problems, appetite loss and hair loss is all connected, but we don't know how yet.
8. My doctor put in a request for me to do a sleep clinic night, but it hasn't yet been approved.

That's about it, in a nutshell!
How is it to read my "stuff" without commentary?

PS- I am writing less, also, because I have decided to not be on the computer for the hour before I go to sleep. Since I am going for early bed times, I don't often open my computer at night for anything more than looking at email or occasional Facebook for a few minutes. My kids need me in the evenings, 100% of me, until about 10PM. Then I try to end my own day as well. Since the sleeping problems have crept in recently, I will be even less on the net to give myself ample opportunity to sleep when it is night time.
Remember my "new year's resolutions" from Rosh Hashana? That I want to go off narcotic pain medicine, and go to sleep early so that I can write and work on my book in the mornings? Well, I'm getting there on both fronts. I'm getting there. :)