Friday, April 24, 2015

An awesome week

It's been quite a week for Israel. In a way, it's one of the most important weeks in the calender year, partly because secular and religious Jews alike feel deeply about these specific yearly commemorative days. This week was the juxtaposition of our memorial day for the fallen soldiers in Israel's wars (all of them), and that is directly followed on it's heels by Israel Independence day. It is a juxtaposition of mourning and joy, which defines so much of the meaningfulness and poignancy of Israel. Both days got me directly in the middle of my heart, where pain and joy lie. A siren sounds in the evening, and the late morning, all over the country at the same time. Drivers on the roads (I was on a highway in the late morning) come to a complete halt, even on the busiest roads, and go outside their car to stand, out of respect and remembrance for the fallen. It makes me cry each and every time, and I've been here for nearly 20 years. The entire country comes to a standstill, no matter *what* anyone is doing, and stands silently for the two minutes of the blast of the siren. Can you picture that? This year, on my mind was my own oldest child, who recently received his first call-up to present himself to the army for being counted. He's 16. They get drafted at 18, or whenever high school is completed, which ever happens first. It hit me *hard* when I got that piece of mail with the insignia of the army on it, addressed to my first-born son. Every mother here experiences that. We are still at least two years away (one can put it off for longer for different types of higher learning, and Dov is considering that option), but this year, during the memorial day siren, his handsome face kept creeping into my mind, even though I was trying to concentrate on those fallen, and their mothers and families.

Israel Independence day brought with it wonderful festivities! There is *nothing* like Israel Independence day, as celebrated in Israel. Each year for 15 years now, we have a close group of about 30 people (adults and kids... some kids who have turned into near-adult kids over the time!) meeting up at different locales to barbecue and enjoy each other. This happens only once a year, on Yom Ha'atzma'ut (Independence day), so it is very sacred, special, and looked forward to! This year it was at my house. It was so much fun! Lots and lots of meat (and non-meat) was grilled, with all the fixings of a wonderful barbecue. For dessert (yes, in the desert, guys!) we partook in the official traditional dessert for the day, our friend Ariella's "flag cakes". These are two cakes, one vanilla and one chocolate, both with white frosting and blue stripes and Jewish star, exactly like our Israeli flag. Before we cut into the beautiful cakes, we all sing "happy birthday" to the state. It's fun, funny, emotional, and sentimental all rolled into one song! Top that off with beer, good stories and good friends catching up, and you have one very special, inspirational, stirring day. Yes, I'm exhausted, but everyone helped so much with setting up and clearing up, I don't think I was more busy than I usually am at these yearly parties, when we travel somewhere to celebrate. Unfortunately, I was in so. much. pain all day, that put a damper on things for me, but you know me, I tried not to show it. Those who know me well, however, know. Today I had to lay low, as pain and dizziness (and my usual problematic headache) crept in every time I tried to accomplish something. But to my friends from the party- do NOT feel bad- at ALL- this would happen anyway, and I wouldn't miss this day if my life depended on it! And I'm glad it was at my house. It gave me pleasure to open my house up to you all. Made good use of the space. :)

on more mundane subjects...

No results yet from the CT scan. I hope to get them on Sunday. Because of the holidays this week things were closed and usual things took longer.

I need to look into the source of the right thigh joint pain. Hopefully the results of the CT will shed light on that matter. If not, I'm going to have to go to bat for an early MRI, as my usual follow-up MRI isn't until July. Something is wrong, and I know it.

As far as the daily headaches, they were supposed to get better when the insomnia got better (from the Fentanyl weaning). Well, the insomnia is gone; I am sleeping much better, and I still get almost daily headaches. I take *lots* of Excedrin. I have to see my neurologist again. These headaches are awful (what headaches aren't? And these are almost daily.) I have no idea what they are from, since I stopped the weaning five weeks ago. I still have a few more doses to go until zero, but it's been so long that I've been steady on the present dose that it no longer makes sense why I am getting these headaches.

I am back to seeing my healer, who I used to see a few years back. I had to stop seeing her because of the long-distance driving/drowsy issue, but since I take much less Fentanyl now, the driving is better. I still get drowsy, so it's still not 100%, but it is important for me to be proactive in my own healing, on a larger scale. The twice I've seen her have been extremely beneficial to me. I am working on some dietary changes, as well as doing emotional work. It is helping me, and I feel stronger (emotionally, if not physically for the time being) for it.

OK, it's almost Shabbat, I have to go shower and get ready.
Shabbat Shalom to all, and to all a great weekend!

Sunday, April 19, 2015

Dear Mr. Surgeon,

"I just want what everyone else has"

...says my friend, as she tries to work her way through a controversial issue.

I could relate to that. I could relate to that because I also want what everyone else has. I want decent health, and to stay away from doctors for long periods of time.

I'll bet that the surgeon who was responsible for the original surgery which lead to NF gets to have decent health. No, I don't know that for a fact. Just like my friend doesn't know for a fact that everyone around her has what she pictures as "normal". But it's what we all imagine.

I certainly couldn't have imagined this. When you look at it, it's pretty unimaginable.
How can it be..... HOW can it be, that almost 8 years later I am still in this #*&^ (fill in the blank)?

I can't even delineate all that is in conflict with what I pictured myself to be. This is me now, but THIS IS NOT ME! At what point do I stop waiting for ME to get better? It is just such insanity living this way; going to doctors- [wasting time at doctors offices] sometimes it's a few times a week (including physiotherapy and lymphatic draining). Every week. Sometimes with an out-of-town trip which wipes me out. Before the surgery to fix the [so-called] hernia back in 2007, I never saw doctors, unless it was for pregnancy. And even then not much.

I mean, I can't tell you why I need to sleep so much, or why I get dizzy and conk out all the time. I want to know why. I am working to balance the problems in my body, but I am sick of working at these problems. Then, of course, there is the pain from both my hips.  It's totally a full-time job, between the doctor's offices, tests, phone calls, and needing to sleep. Oh yeah, and being a mommy to four kids, a wife, and the main caretaker for a large house.

"I just want what everyone else has."

Eight years, and although I am not disregarding real progress made, I am way different than who I want myself to be, physically. I want to have no acute problems, just like so many people out there.
I hate wearing the pressure garment every day. It is hot, tight, un-giving elastic with a foam pillow filling in gapey. It's not like regular elastic, it's material made for people with lymphatic swelling problems. If I don't wear it, the lymphedema problem returns with a vengeance, and gapey hurts.

As we know, something is going on in my right thigh joint, and in my worst, deep down fear, I think it's a cancer tumor. There, I said it. It could also possibly be PVNS, which is like a cancer.
The CT scan was pushed off for another two weeks for technical difficulties (theirs, not mine), so we'll have to wait on that.
[for anyone new to the blog- the definitions of "gapey" and PVNS are at the right sidebar...] day continuation....

The update today is that I have my CT scan later today (Sunday). Soroka hospital called me to make it earlier, so that's good. I also will be accompanied by a close friend, which is also a great perk for me! Most of the time I do my medical stuff alone. This CT scan will take about two hours because it involves the contrast dye- iodine. I have to drink a few bottles of icky stuff, then wait till it does it's contrast thing in my innards, then do the scan. Even though the scan is to see what is going on in the right thigh/groin, in order to have the contrast dye for that area, I have to have it flushed through my entire abdomen. Not great for kidneys, I wish there was a better way. But, at least it is today. Hopefully results will be within a week.
[Addendum to the CT scan- I had it today, and I didn't need to drink the iodine stuff! I had it shot into an IV during the CT, but at least I didn't have to drink two liters of the stuff. The push of iodine into the IV is quite uncomfortable, and afterward it took a while to feel normal again, but the bottom line is that it went OK, and it's over. Results within a week.)

How can one nasty infection, and many surgeries (related to said nasty infection) within a short amount of time render an otherwise healthy, vibrant woman half of who she wants to be? I still want to see myself as the active, vibrant, productive Sarah I was before May of 2007. But I have to accept this Sarah, for better or for worse.

To the surgeon from back then: are you listening? I want you to know. I know it's my life and not yours, but your decisions shaped my life in a way I didn't choose. I mean, my decisions shape my life now, of course, but you had my life in your hands eight years ago and you were careless with it.
Too bad we don't have a crystal ball. Hindsight sucks. Having said this, Mr Surgeon, I don't harbor anger. I know you never actually meant harm, and I remember that you apologized not once but twice. What I feel toward you is so mixed, not for blog writing. I wish we could talk. Maybe some day. Obviously now isn't the time.

(For all of you who look to me for inspiration- sorry, not much of that flowing out of me today. Get back to me next time, hopefully I'll have a better outlook.)

Tuesday, April 14, 2015

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.

Monday, April 6, 2015

Neurology at it's finest, Passover 2015

Shortly after I wrote last, I put myself in my neurologist's office. I didn't have an appointment, and couldn't get one, but I was desperate. I had remembered from when I was in the meditation/relaxation course that he was always in his office around 3:00pm Wednesday's, which was when the meetings were. So, I decided to go his office at 3pm on Wed and take a chance that his schedule hadn't changed. I walked down the corridor of Soroka's neurology ward, with my head spinning, feeling like it was shifting in my skull, toward the end... where Dr. Ezra's office is.  His  door was wide open... I peeked around the door frame, and there was his calming face, sitting behind his desk, with *nobody* else with him. That almost never happens. He looked up, smiled a big smile at me, and welcomed me in. What a relief, even before I even sat down.
I asked him if I could steal a few minutes. He said "of course, come in". That was only the first of an entire half hour of positive doctoring he freely gave me. Remember, this is socialized medicine, he doesn't get paid for that.

Dr.: "How are things going"?
S: "it's hard. It's been very hard lately." [tears start pooling in my eyes]
Dr.: "have you been able to practice the relaxation techniques from the group sessions?"
S: Not so much. Only if I find myself in a lot of pain and trying to fall asleep.
Dr.: OK, well, let's do that.
(Sarah, not sure what is going down here....)
(Dr. gets up, turns down lights, invites me to go sit in the large, leather recliner in the corner of his office)
(Sarah, settling into the chair, starts to feel a wave of gratitude while pulling up the handle at the side of the chair, reclining and stretching legs out)
Dr.: close your eyes, relax, and listen to all the sounds going on. Tune into the now: the air conditioner, the voices outside my office, the sounds outside the window.
Let yourself relax; your facial muscles, your forehead, your cheek muscles, your neck muscles, all relaxing.
(Dr. continues with a guided meditation to relax body and spirit. 15 minutes pass by before He counts "5-4-3-2... you are coming back to full wakefulness... 1")
I can't tell you how grateful that made me feel. Gratitude is a small word in comparison. Can you begin to understand, after so many experiences with insensitive and arrogant doctors, how having this experience- without even a formal appointment- made me feel? Like warm cascades of honey flowing inside me.

Dr.: Come sit back on this side of the room and I'll go back to my desk.
"So tell me what's going on."
S: I have been able to wean off Fentanyl until 12mmg in five months.
Dr.: wow, that's significant. Realize that you have accomplished a lot.
"How is it going with the Cannabis?"
S: Well, yeah, I want to talk about that. I brought it here- take a look [showing bottle of drops]. I took
it in the evenings for about two weeks. Only in the evenings, because it makes me spacey and             detached from my words. It does stop the restless leg syndrome, though, and that helps me sleep,     so I took it for a while.
What was happening, though, was that I was getting a headache every day, all day, so I stopped. [I began crying.] I told him that everything has been so confusing, and I've been doing this without        enough medical follow-up.
Dr.: Should I open up your file on the computer and record a formal doctor visit, or is this a                  conversation?
S: I dunno.

(The doctor then called his secretary and asked her to open my file and record a formal visit.)(Remember, no appointment. He didn't *have* to do any of this. Warm honey.)

Dr.: How are the pain levels?
S: I have had significantly more pain, but I can handle that a lot better than the dizziness; that is the     worst. For weeks now I haven't seen the world straight, and all I want to do is lie down. Then at           night I don't sleep. No matter how tired I am, insomnia hits and it is brutal. Every single night.
Dr.: what sort of dizziness? Spinning? Is it when you lie down that the room is spinning? Or is it like  side-to-side shifting?
S: Side-to-side shifting, all the time. It never lets up.
Dr.: How are  you doing the weaning? At what rate?
S: 6mmg every two weeks or so.
Dr.: The problem with that is that the lower you get in dosage, the more, percentage-wise, is being       taken off. Taking 6mmg from 100mmg is very different than taking 6mmg from 18, which you
  just did a little while ago, right?
S: Yes, almost two weeks ago, and that is when the awful dizziness got to this unbearable point.
Dr.: Yes. Of course.
Dr.: Ideally, the Cannabis should help you with these side effects.
 Maybe you should try diluting it in water and drink that cup of water in the evening?
S: I didn't know you could do that. I mean, it makes sense, but that's what I mean about having no    medical support person to consult. That is why I came here today. I just am at my breaking point.
Dr.: I am thinking that maybe I should start you on a low dose of "Lyrica". Have you ever taken       Lyrica?
S: I have taken it, many years ago. It was one of the first medicines I took. It would work, then stop working, and Dr. Z would have me raise the dosage. It went like that until I got to a pretty high           dosage. Then, my GP, as well as Dr. Z, decided that being on such a high dose of Lyrica can be           contraindicated with me already being on [another one of my medicines called] Lamictal. So, I           weaned off the Lyrica and switched to another medicine for nerve pain. I didn't have any particular     side effects.
Dr.: OK, so I think it's a good idea to start it again, only for a temporary time period, on a low dose. It will help with pain in general, and help the weaning, and hopefully help you sleep.
S: OK. I was hoping not to start more meds, but I understand the logic.
Dr.: That, along with the diluted Cannabis should get your sleep straightened out. Hopefully the     dizziness will go away, too. Stay on this dose of Fentanyl. Nobody is chasing you to go off of it           fast. You can stay this way for a month or so, then try again, a very small reduction of the dose.
S: Agreed.
Dr.: Come see me in three weeks.
S: I can never get an appointment with you, you're booked until November.
Dr.: I'll call my secretary and tell her to get you in.
S: Thank you. Thank you, thank you, thank you. If it was appropriate to hug him, I would have. I'm sure he understood that. My eyes said it as the meeting was ending.

Since then I have been doing the meditation/relaxation more. It helps. Helps all the systems calm the heck down.
I am pleased to announce that Today, Sunday the 5th of April, 2015, is the first day that I had a perfect night's sleep (with pills at the beginning, but OK, the sleep continued on it's own all night), woke up looking forward to the day, had NO PAIN, and my head was screwed on straight- no dizziness at all. I cannot *remember* at all the last time I felt this way. I had normalcy return, if only for half the day.
We packed up the kids in the car and headed north today. We are spending the week of Passover away seeing family and friends. (spring vacation for the kids- all the vacation days in all the schools here are built around the Jewish holidays. This is the only place in the world that is that way. That's one thing I love about living here. On another, unrelated note, but related to loving living here: while traveling on the highway today, there was one of those electronic signs above the highway which is used for warnings about traffic and whatnot, but today it said "מועדים לשמחה" (translates to: "have a happy [intermediary] week of Passover!") Right there on the main highway. That is what is called "an Israel moment". That's when living here reminds us that we are home. OK, my "Israel is the best and only place for the Jews" comments are over.)

I was going to say that I did start getting the daily headache today, in the car, late afternoon, when it usually starts. I took Excedrin and it was staved off, thankfully. (Dr. Ezra said it'd be better not to take the Excedrin every day, but as long as I have these headaches, I don't see any other choice.)

I was less fortunate on the night of seder (first night of Passover). It was a lovely seder; inspiring, thought-povoking, interesting and tasty. I was going great until about 2am when I had a migraine descend upon me like a hail cloud. Boom. It was strong and wicked. I took some medicine my hostess gave me, but it wasn't strong enough. We got home from seder (which was at our friend's house) at about 3:30am. Everyone flopped to sleep except me. I wound up tossing and turning in the grips of an insane migraine until 5:30am when the Cannabis and another sleeping pill saved me. I slept much of the next day, and recovered.
Today, I can say that the headaches remain the hardest part of the withdrawal. I've been taking the Lyrica for only four days, and today was the first day of virtually no pain, until the headache moved in late in the afternoon. That's pretty good.

We're on vacation, and have fun things planned. I believe I'll be able to enjoy it all with my family, with Hashem's help. Not to underestimate the help from the neurologist. Not at all.
This is the doctor, if you will remember, who said to me that when he knows that I am back to playing horn again, he will know he has done his job. From his words to Gd's ears. I miss playing so much. I want to sink my teeth into beautiful symphonic literature. That day will come. Again, yes, with Hashem's help.

In the meantime, I'm taking life easier, staying on a low dose of Fentanyl until the time comes to reduce it again. I will get off of it. Just don't know when, and I don't have to know when, right? I've come a long way. I can do this. I will do this.
Happy Passover, Easter, and spring to everyone out here! And I humbly thank you all, again, for your undying support. How on earth can you put up with me for so damn long?

Coming up on the 8th year anniversary of NF. Seems so long ago, but the fact that I am still caught in the mire of "nuclear fallout" from it makes it seem, actually, not very long ago at all. In fact, I still don't have much distance between my soul (not to mention my body) and it. Not a day goes by without some sort of memory- either body memory or intellectual- passing through my head. Quite often more than once a day. That's OK. I can accept the way things are. There is a reason for everything. Each time these memories and thoughts come, a little more of me gets healed.

Good night.
And thank you, Dr. Ezra, for being the mentch that you are. You are a gem among doctors.

(My attempt at a sunset with a computer drawing program.
I know it looks like the artist is 2.)

Monday, March 30, 2015

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.