No plan, actually.

About that last post... ten year plan.... well, honestly I realize that there can be no plan. There can be no time line. I have days where I am closer to accepting that these changes I had in my "life plan" are here to stay, and days when I feel I am waiting for that past-tense Sarah to come back.

They say that you either get better or you get bitter. I used to be bitter about this all... all of it... the victim mode of how I got NF, all the diseases, pain, and surgeries that followed, everything. I don't think I am bitter at all anymore. And yes, I am better, but not all better, and I am pretty sure I'll never be all better. I have to accept reality, and not keep hoping to return to being the active professional musician and doula I was. It doesn't mean to give up hope, I have not given up hope. And I know I am a trillion times better than I used to be health-wise. Reading back in my journals, especially the CaringBridge ones (which I do often for writing my book), I am constantly *astounded* with how sick I was, for many many months; years, actually, and in so much pain. It is mind boggling.

My yearly follow-up for the PVNS in my left thigh brought with it a question mark the other day in Ihcilov hospital. I have been having knee pain. No injury, just some pain, going upstairs sometimes, and when I do Tai Chi or work out. Left knee. I told my doctor this, because he asked how my other joints are doing. He examined my knee, and then ordered an MRI. Suspicion of PVNS spreading to the knee of the same leg. It does that. PVNS acts like a cancer in that it can regrow new tumors whenever it wants, and in any joint. The difference is that it can't kill you directly. It can destroy a joint to the point of needing amputation if it is not taken care of early, but it doesn't have potential to take over the body. It's an oncological giant-cell tumor disease, but thank Gd not directly deadly.

So, now I have to take care of getting an MRI test for the knee. My personal gut feeling is that it isn't PVNS, but we have to check.

On another front- the headache world tipped the scales yesterday.
I had been nursing a headache for a few days with analgesics. Since the weaning from them, I am "allowed" to take them twice a week, but not two days in a row. I had taken them twice already, a little less than two full days apart, and yesterday a headache developed that I knew I couldn't medicate. Well, yeah, you guessed it. It got worse and worse until I almost exploded. I thought "maybe I should just ride this out, see how long it takes to go away on it's own". But, as the day went on, I was in so much pain, I could barely see, and I was moaning and writhing in my bed. It just kept escalating. It is so frightening. I threw up, too.

I took a cab to the hospital when I just couldn't take the pain anymore.

It took longer than usual, but I did finally get the IV "cocktail" that I need to break the migraine. Thankfully there was a good neurologist on call, and she remembered me from last time. She also agreed to shut off the lights in the room we were in, even though she needed to write on the computer. I so appreciated that.

I am home today, but still with a headache. Not a migraine, but I'm laying low.

I started the new migraine medicine today. I had been avoiding it. The reason I started weaning off the Lamictal (which I am still doing) was to start the medicine which is supposed to help the migraines. I hadn't started the new medicine, though, because I just didn't want to. I don't want more medicines in my body. You all know this has been a long-term goal for me. I hadn't had a really epic migraine since I was in NY a few months ago, so I was thinking maybe I just won't start the new med, and I'll wean off Lamictal, and my body has less medicines in it! Sounded great... until yesterday. Truthfully, it was like a two-day headache already by yesterday because I had been medicating it at home. The fact that it is lingering today makes it a four day headache. Even if this is "only" going to happen every few months, it is horrendous. And there is no telling when it will hit. I keep a journal of my headaches and trigger factors. There is no rhyme or reason any of us can see as to when they come. So, as I continue to wean off the Lamictal, I started the Depilept today. Let's pray this will help. I am sad about starting a new medicine. Side effects... what will happen now? I hate it all so much.

I have to close the computer now, my eyes are bothering me because of the headache.

Hopefully better news next time.

Not in a good space after an Epic migraine. Soldiering on anyway.

All I want is stability. Life is so crazy, and I am so tired of being in the world of the not-well.
At the moment I am sitting in a hallway which I have sat in, wasting time, all too often. It is the hallway where people wait to prove they need disability benefits, specifically for walking problems. It's a specific hallway, a specific disability. I'm here to prove again that I am worthy of receiving money from the state for having limited walking issues. I hate all this. I'd gladly give up the disability payments, the handicapped parking tag, everything, just to get a normal life back. I may not be back in time to take Azriel to basketball practice, the appointments for people waiting in this hallway are already an hour behind.

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I had to order him a cab for him to get to basketball. He's 10, told me he was scared to ride alone in a cab. I told him to call me and we'd talk the whole way he was in the cab. He did. I did. He got there.

I had my disability hearing. The doctor there had me lie on the exam table, he literally grabbed my legs, one by one, and threw them around to see if they work. I yelped, gasped in a breath. Now I'm in pain. Thanks, dude.

There is so much going on. I am so stressed out. I never know when a horrendous migraine is going to take over my brain. Like, take Friday night, for example... (5 days ago).

I felt that pain behind my eyes when I woke up on Friday. I knew I was "at risk".
But there is no medicine I can take to stave it off, I knew, like watching two cars getting into an accident, that it was going to happen, and there was nothing I could do about it. I prayed.
But like those two speeding cars you are helpless to stop from ramming into each other, the inevitable happened; a huge migraine. No medicines I can take. Total head-in-a-vice.

I finished making the kinoa stuffed zucchini for Shabbat, and an awesome gluten-free chocolate cake with white chocolate /banana/ whiskey frosting for Robert's birthday. It was outrageously delicious!

I said to Robert I'm going to need the IV of steroids at the hospital. This was about 5pm on Friday. We were thinking about asking a friend to take me to the ER because the kids were alone, and Shabbat cooking was in high gear. Robert called a friend or two, didn't get anyone available, then I told him to forget it, I made a plan. I'd drug myself to sleep with sleeping pills and Zanax, sleep it off until the next day. I did NOT want to go to the hospital. I hate that place.

OK, he called it off.

I took the pills and Cannabis oil, and waited it out in a darkened room, moaning in pain.

The migraine intensified so much that I was yelling in pain. This was two hours after medicating myself. It was 50 on a pain scale of 1 to 10.

Robert took me to the ER.

Before I got my IV cocktail, I actually passed out. I don't remember it, but Robert told me. I was writhing in pain on the hospital gurney in the ER, clutching Robert's hand, and at some point Robert said my hand went limp in his, and it got quiet. I passed out from pain. For the third time in my life. First one was the night I went back to the hospital in pain, four days after the original hernia surgery. Second time was when I had the cellulitis 4 months after NF. Now I passed out from a migraine. It's *that* bad.

I got the steroid/nerve relaxer IV cocktail, and the migraine subsided. Pain level went from a 50 back to a 5 or 6. I was grateful. (not sure if the little Beduin nurse who inserted my IV lock was so grateful when she could barely get it in; I couldn't stay still because of the pain. Foul language may have flown out of me...).

We went home. The guest we had invited for Shabbat dinner was just leaving. Turns out he came over, had Shabbat dinner with the kids, and he was just leaving when we returned. Life is so strange sometimes. But I was glad he was there with the kids. Really glad, actually.

Shabbat day (Saturday) I slept in the morning, and we had guests for the afternoon. It was a heat wave- 105 fahrenheit. Our friends stayed all day; it was their last day in Israel for at least two years, we wanted to squeeze all the togetherness we could with each other before they leave. My 10 year old, Azriel, is very close with the children in that family, so we drew out our time together as much as possible.

But I was not in great shape, I gotta say. I have to be more careful. I really needed to rest after the insanity of the night before, but I pushed myself. I am so much about connection with people, it is hard for me to even hear my own needs sometimes, until they scream at me.

The one thing that kept another migraine from blooming was that I was still on the steroids. There was a migraine in my head, but it didn't bloom because of the steroids. I don't know how else to explain it. That is exactly what it felt like.

I am on the steroids all this week, by pills. I am tapering off from getting the huge dose on Friday night. What happens when I am off them? Only Gd knows.

I am waiting for a date for an MRI scan. It is now in the system as "immediate action necessary", but I don't have a date yet. We are going to the states July third, I really hope to have the scan before then. My neurologist says he can't continue with a treatment plan until he sees an MRI. I feel this is the first time he dropped the ball... he's really been excellent for me. But he didn't order scans early on, and now I have weaned off all the headache medicines, and the migraines are in full force, and I have no medicines to take and no treatment plan. The ER is the treatment plan. It sucks.

Meanwhile, I have four kids to care for. Each one of them is a world in his/her own, and I am their mother. And I'm not even referring to the tip of the iceberg of cooking and cleaning and laundry. That's nothing. I have three teens and a 10 year old. Dov (17.5 yrs old) is knee-deep in matriculation exams and is stressed out, Ya'akov (16) is switching schools and is struggling on a daily basis with life. Shifra... Shifra is 13. Need I say more? Ten hours of ballet a week, school work, heart-to-heart talks on a regular basis, problems with friends, clothes, contact lenses, braces.
Azriel is my easiest kid... I deserve one, don't I? :)

There is seemingly no end to the medical paperwork we need to fax here and there on a daily basis. Referrals for the two MRI's I need: one is my yearly left hip MRI for the PVNS follow-up (coming up in a few weeks), the other is my head/brain. I need paperwork for those. I need to fax receipts from the doctors I see privately to our private insurance if we are to get reimbursed. But, since those receipts were lost, I had to go to the clinic today and get them to reprint them and I had to physically go to the doctor to have him sign them and stamp his rubber stamp on it. And the phone calls.... constantly organizing things with phone calls. I know you all have to do that, too, but today it is just all too much for me.

BUT......

I paid for a series of ten massages from my favorite masseuse... I hadn't gotten a real therapeutic massage in many years. So, doctor's orders, I called her and signed up. I've had two already. This woman is so strong, and MAGICAL. She thought I was calling to pay for ten massages for Ya'akov; we did that for him in the past because his tics from Tourette's make his body very tense. I told her they were for *me*... that felt good. And feels good.

And I still did Tai Chi this morning.
And I plan on going to the gym tomorrow.
And I am taking care of my friend's 6-year-old daughter all afternoon tomorrow.

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

I saw my neighbor today and she asked me if I am bored not working. She said she is so bored at home with her 1 year old, she can't stand it. I was literally tongue-tied for what to say to her. We've known each other for 15 years... I told her I'd do anything to be healthy and be at home with my baby.

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

Withdrawal: MOH (medication-overuse headache)

I was sure I could handle the withdrawal without assistance. I did it with the Fentanyl, how much harder could this be?

Yah, well, it is harder. It's "cold turkey" instead of slowly tapering. That makes a big difference.

Just spent three days in the hospital neurology unit dealing with my horrendous withdrawal headaches.

The second day of no meds was on Shabbat (this past Saturday).
By Saturday night, my pain level was way past 10. It had gotten to 10 at about 4PM that day.
My neurologist said that the hospital could give me an IV "cocktail" to help the withdrawal and the pain if I needed it.

We went into the hospital at 8:30pm.

In the ER, they didn't know what to do for me; I was supposed to be going off over-the-counter medicines, and I was there in terrible pain, they didn't know what they could give me to help. They actually took initiative to call my neurologist at his home, at 10:45 at night.  Dr. Ezra (my neurologist) answered. That is also not to be taken for granted. He told them about me, and what to give me.

I got the "cocktail" IV only at about 11:30. I was in so much pain all I could do was lie in the hospital bed in fetal position and groan. I could barely see straight- my eyes were very effected with this withdrawal. It was hell.

So I was hospitalized at the advice from my neurologist. I couldn't do it alone, afterall.
Sometimes Hashem reminds us that there are things we just cannot do alone. We were not put in this world in a vaccuum; that, part of Tikun Olam (repairing the world) is realizing that people are here to connect and help other people. Ultimately this leads us to strengthen our connection with Gd.

At the hospital they gave me some steroids for the pain and a muscle relaxer medicine. It helped ease the pain a bit, but not a tremendous amount. For the most part I had to just slog through it, praying for Hashem to release me from the pain in my head.

My neurologist is really a gem. I have said it before, and it is only more and more true each time I see him. The morning after my intake, he came to my bed to visit and see how things are going. I said its been hard, but I'm plowing through. He asked me if I am doing any relaxation techniques, the kind I learned from his course on meditation for chronic pain sufferers. I told him I wasn't. At that moment, during busy morning rounds, he invited me to come into his office to do a relaxation session. Right then and there. I got comfortable in his big lounge chair with the leg rest and reclining back. He took my phone and recorded a whole meditation for pain session (in his voice). It took about 15 minutes. He asked me if I have less pain, and I said I didn't, but I am definitely more relaxed. He said to listen to it on "loop" (repeating over and over) to try to help overcome the pain.

Then he carried on with his rounds. Amazing.

He also had a special "protection" assigned to me... the nurses never woke me up to take blood pressure or temperature. After all, I am not sick, I just needed some back-up for a withdrawal. I never got woken up (by nurses or doctors) the whole time I was there. That, I think, is a miracle in and of itself.

I came home on day 5 of withdrawal. The hard part was over, but the headaches still hung around.

Today, the end of day 7, when Dr. Ezra said withdrawal would be finished with, I still have a dull, consistent hum of a headache. I went out with my family to celebrate Israel's 68th birthday, though, thankfully I was well enough to go to that-- our yearly cook-out with friends from all over the country.

My eyes are really effected by this withdrawal. The first two days I had a white light behind my eyes, no matter how dark I made them. I was also seeing strange visions, icons sort of, inside my closed eyes, for days. It was so strange. Now I still have some of that white light effect (kind of nerve-wracking, in a way) when my eyes are closed, and they are still over-sensitive to light. I am looking forward to a headache-free days (I have had one, yesterday), and taking off my sunglasses.

selfie from my hospital bed
Ya'akov calls it "gangsta momma"

What is unknown is what to expect about the migraines which triggered this whole cycle to begin with. I am supposed to start charting them, dates, times, rating of pain on a scale of 1-10. My current instructions are that I can take Excedrin/Advil if I feel a headache coming on (after this initial withdrawal period), but not more than once a day. Also, up to twice a week is OK, but not two days in a row. I see my neurologist again in a few weeks to follow-up, and see what comes next in evaluating the migraines. Probably an MRI first. I haven't ever had scans to evaluate the migraines.

This is all so "one-day-at-a-time".

Did I tell you my right hip (recent surgery, 6 months ago) started acting up also? It hurts these days. It had stopped hurting for like 4 months. I thought I was healed, but now I realize that all those analgesics I was taking were also helping cover that pain. Hopefully when I get back to the gym, and start working out slowly, it will be better. I hope.

As they say in Israel, "פרה פרה" (para-para, literally "cow-cow", like, we'll milk one cow at a time, no matter how many there are. It's a great expression.) Actually Dr. Ezra used an expression taken from Arabic- "שואי שואי" (shway shway) meaning "little-by-little".

I'm getting there.

Neurologist meeting; finally

I finally carved out some time to go see my neurologist. I had to wait outside his door for almost an hour, but he eventually came, and was surprised and smiled pleasantly when he saw me. I hadn't seen him for a year. He invited me in, opened up my file on his computer (I didn't have an appointment, remember), and talked with me as he ate his lunch. I apologized for stealing his lunch hour. He knows it's impossible to see him if you rely only on "the system" for your appointments. I told him my next scheduled appointment is in August, and things have been getting so bad that I resorted to barging in on him. He was so nice about it. Gave me his lunch time.

I told him about the constant, daily headaches. I told him about all the Excedrin and Advil I take daily just to survive the pain. I told him about the medicinal marijuana (he knew about that, of course, because he is the one who submitted the license request, as I was weaning off the Fentanyl). He didn't know that I didn't use the marijuana drops almost the entire time, that I just started two weeks ago.

His main response was:

"In no uncertain terms, you must wean off of the over-the-counter medicines." 

There is a name for what is happening to me: "medication overuse syndrome". It's well known.

He actually warned me of this over a year ago, but I was working on the Fentanyl weaning, and could not handle taking away my migraine pain relief.

He said that until I am off all the over-the-counter medcines, he can't investigate the source of the migraines. We can't get a proper reading on the frequency of the migraines until we know that they are not being caused by overuse of medicines. Right now what I am apparently getting are called "rebound headaches". Thing is, I take the medicine so much because my head hurts so much. How am I supposed to wean from that? Just have my head splitting open with no relief?

Yes, says my neurologist. He told me it's going to be hard, but just for a week. Not like the Fentanyl withdrawal which took 10 months. But this has to be cold turkey. No cutting doses... anyway a lower dose does nothing for my headaches.

He suggested to hospitalize me for the process. He said that they can give me a few different things which are not analgesics to help the pain and weaning process. I flatly refused to be hospitalized. No way do I want to spend any time in that hospital (or any, for that matter), doing what I can do unsupported medically at home. I hope. He warned me that it will be damn hard. Different completely than Fentanyl; it's an entirely different process in another part of the brain than where the opiods hang out. He said that if the pain gets too bad and I'm not handling it, I can go to the ER and get the cocktail that will help the withdrawal any time. I just have to explain what I am doing there, and that Dr. Ezra is my doctor.

I was crying buckets.

Like I said before, there is a special awful place for headaches. I have had lots of pain over the years... migraines included, but in a separate category. All the pain I've had in my hips, belly, thighs, you name it... it just effects me differently emotionally. I cannot take headaches. I am scared to start weaning. I am on a steady diet of Excedrin/Advil, almost every day. Overuse syndrome is defined by taking that stuff twice or more a week. Yah.

How the he^^ am I going to wean off these medicines? I know you are saying "if you could do the Fentanyl, you can do this". But it's not the same. Headaches are unbearable to me.

I am presently involved in helping my friend (who is currently hospitalized) and taking care of her daughter (6 years old). I love her daughter- it's a labor of love, not at all a burden, but there's not a lot of time to wallow in my headache pain without being able to get it under control.

I have to do it, though- I have to get off these medicines. My neurologist was 90% sure that the headaches will be less frequent when that stuff is out of my system. I have a headache at the moment, too. And I am so in need of Excedrin. I did take yesterday, because I am not yet in a position to wallow in my headache, as I said. Yesterday was a very long day. All the daytime hours were spent at the wheel, driving round-trip to Tel Aviv to the hospital so my friend could see her oncologist (taking the train for her is too taxing physically). Evening hours were back here in Be'er Sheva, checking her in to Soroka hospital. She is sick, but hopefully she'll be better with antibiotics. I got home from Soroka at midnight, with her 6 year old daughter. Yeah, we're tired. Understatement of the year.

I don't know when I'll start the weaning, but I have to deal with it. My quality of life has so vastly been reduced with these daily headaches (which sometimes turn into full-blown migraines, like twice a week). Next week holds our annual Israel Independence Day cook-out/picnic with a huge group of very close friends. I don't want to be 'out' for that. But I also don't want a headache. But even if I start now, it won't be over by Thursday when the picnic is.

Sigh

You know how it's been so impossible to get an earlier appointment with my neurologist? That the secretary wouldn't budge from my August appointment, no matter how many times I called? Well, *presto*, sitting with the doctor, he gave me an appointment for three weeks from now. Only through him. It's enough to make one crazy. A magical appointment slot. Something from nothing. I've been so desperate for so long, week after week not being able to plant myself at his office on Wednesdays at 3, and now somehow the appointment fairies opened up a time for me.

So by the time I see him in three weeks, I better be off the medcines. Or don't go to the appointment. He- very kindly but firmly- said that he cannot take care of me as long as I am taking OTC medication. He cannot evaluate any source or do any clarification tests (MRI) until I am off the medication. Only then would we have a pattern of headaches without the meds.

Then, says Dr Ezra, we need to work on getting off the sleeping pills.

How did this become my life?

How did I become this person with the medicines? I was never like that before I got NF. I never took anything, didn't have migraines very often. 

Pain shifts one's world. One's entire universe shifts when one is suffering with constant pain. It's not at all the world of the well. There is a barrier to that world. That's where I'm at... and it's gonna get worse when I stop taking the headache medicines. 

I keep having more hurdles to jump before I can appreciate what well-being feels like.

How did I get in so deep? And this is *after * going off Fentanyl.

I am still taking the marijuana drops, three times a day as prescribed, but it does nothing for me or my headaches. I think I need a bigger dose, but I am wary of going higher. I don't want another thing to wean from in my future. Or maybe it'll wind up being totally positive for me and I won't ever have to go off. But optimally, it's clearly better to be on no medicines at all, and especially not long-term. It will be helpful to have the marijuana drops while I am trying to go off sleeping pills.

I've been on the sleeping pills for almost nine years now. Nine year anniversary of NF is coming up.

On a good note, the day of my waking-up-from-coma anniversary, which falls on the Jewish holiday of Lag B'omer (in about a month), is planned to be a great day this year! Robert & I are going to see Elton John in concert here in Tel Aviv!!!!!!! It's an amazing story how we are going to be there....

I had mentioned on Facebook that I wanted to see Elton John when he comes, but the tickets are too darn expensive. Well guess what? Our dear friend Ken Quinn took up a secretive mission to send us to the concert! He corresponded/spoke to a ton of friends, asking if they are interested in donating to the cause of sending me & Robert to the concert, and not only collected enough for the *close seating* tickets, but also for a pre-concert dinner! Un-buh-leive-able!! The word 'gratitude' seems too overused of a word to express how I feel about this... but yeah... humble gratitude, amazing warm loving thankfulness, and feeling like the most blessed person on the planet to have these people. And to have fantastic Elton John tickets!! {{grin!!}}

Our friends are a blessing in a zillion different ways, and our community is amazing. I can't imagine where I'd be without you all....

We're going have to do this again... the weaning... I need your support... I don't want to do it. I am scared, upset with myself, frustrated, and, well, *really* scared... of having my head splitting open with pain and having no recourse. Well, there is the emergency room and the "cocktail" in an IV drip that could help me. But how, when, how and when??

When????