troubling times

I'm still here.

Not writing much because I have no new news, which can sometimes be OK, but in the middle of a PTSD relapse (which started about two weeks ago, I wrote about it in my last blog entry) it's not so OK. I have been externally mostly functioning, but internally not. That can only go on for so long... especially when I'm not sleeping much. The sleeping problems are a direct reflection of the PTSD.

It's actually come to my attention recently that I probably fall under the category of "complex PTSD", or C-PTSD.
I am seeking help for it. It may be another three weeks before I get an appointment with who I feel can help me the best, but that is 'the system'. Three weeks is good, actually. I spoke to that therapist today, after not receiving an answer to my email I sent about 5 days ago. So I need to go through the process of getting the referral and payment from the HMO, sending it to the therapist's office, etc. But just know I'm not just sitting around letting it eat me away.

I've started the four MRI's that have been ordered-- two by the NY surgeon who may be doing the reconstruction surgery (if I choose to do it), and two by the pain doctor here in Israel to try to diagnose why I was in such pain in my abdomen most of last year. I had the first of the series a few nights ago-- yeah, night. Didn't get into bed finally until almost 1am. It was a very loud, very long one. Loud because they only gave me one set of ear phones, not the foam ones to go under those. It wasn't enough (especially when you're already suffering PTSD). It was like I was in the car with the alarm going off constantly, and a jack-hammer at the sidewalk next to me, and an alien abduction all at the same time. And it was long-- longer than usual (remember, I must have already had at least 30 MRI's in my life, maybe more). It was for neck & spine. In the middle of the test, the machinery stopped, I thought (hoped) we were done. But no, the technician came in to tell me that he's sorry, he needs a small break for a technicality, he'll be back soon. I don't know if he needed the bathroom, or whatever, he said it was a technical problem. All I know is that was at least 10 minutes of me not being able to move my body into any comfortable position without the test going on. I was stuck in the white tube. He came back and all the noise started up again... he said he had to redo the test from the beginning, he's sorry. Annoying. But at least it was without the contrast dye, so I didn't feel sick to my stomach and headachey afterward.

Waiting on results from that.

Fighting another migraine today.... they are happening frequently, but not at the strength that they used to be when Robert would take me to the hospital, vomiting, and nearly blinded. But it's so frequent, it gets me down. I went to a wedding the other night... my first public party in over two years because of being in the years of mourning, first for my mom, then my dad. The wedding was fun, but I had a budding migraine beforehand. I had to decide whether to drug myself up and try to go, or slip into bed and do stronger medications and call it a day. I compromised-- I did mildly strong medications (I was driving), and got gussied up (even put on make-up!) and went. It was a good decision.

But it's hard to get back into the public world after over two years of mourning. I have such mixed feelings about it. I miss my daddy tremendously. Tremendously. This time last year we were sitting shiva for him, in the house I grew up in, which no longer is in the family. Thanksgiving came and went last year, even though I was technically in America, there was nothing to celebrate.

Lately I'm just not feeling well, in general. It's physical as much as emotional. We're experiencing some very trying times with one of our children, and that weighs heavily on me as well. I pray our counselor can help navigate us through what is for me very murky waters. That, together with my physical limitations and constant pain, well, sometimes it all comes together in a not very elegant picture.

Oh, I'll end with this thing that has been sticking in my head this past week, although really not at all contributing to my PTSD thankfully. Just a heavy thing that is on my mind.
Most of you know about the bandage-ripping-off trauma I suffered at the hands of my plastic surgeon when I had the skin graft surgery for NF, right? I'll reprint here for you the CaringBridge post Robert wrote about that immediately after it happened:


Sunday, May 20, 2007 4:04:00 PM


Today's news is very positive, though there's much to talk about. But first just this: Sarah is coming home tomorrow!!! We are so excited and thankful, and also a bit apprehensive. But mostly, we're just thankful: thankful to HaShem, to the Soroka medical staff, and to all the family members and friends who have supported us throughout this ordeal. With that thanks given, I do want to share the ordeal we had just this morning, if only to underscore how even with great progress there is still a lot of hard work and pain ahead. The day started with two instances of classic hospital insensitivity to patient pain, a topic which in my opinion deserves appropriate legislation vis a vis patient rights. This morning the doctors woke Sarah up and removed her donor leg bandages and the debridement wound bandage in order to inspect the progress and teach interns. Unfortunately, they were quite callous, not administering any pain killers after a night of sleeping, and not warning her of the impending intense pain. Just afterwards, Sarah called me in pain and in a desperate mood, and I got out as fast as one can with a toddler and baby to feed and dress (and bathe after a diaper blowout!) and drop off at their respective child carers. When I got there, Sarah was still in a lot of discomfort, but after about half an hour, she was ready to eat a little, take her antibiotics, and then shower before having her staples (used to reinforce the grafted skin) removed. We were worried about that procedure, but the attending nurse did an excellent job, patiently and caringly extracting some 89 staples in about 15 minutes. Only a handful caused pain (Sarah is mostly numb there as most of the nerves have been cut), and even that pain, though strong, passed within 10 seconds. Now it was time to put on the new dressings. Unfortunately, the aforementioned callous doctors left the donor leg with the bandages strewn across the wound, and so they got stuck, making it impossible for Sarah to stand up without acute pain from the pull of the dangling bandages. She eventually managed to get up briefly and transfer to a wheelchair, and thusly was she showered. That went OK. But then nobody warned her that the first dressing change for the donor leg burns for about 30 minutes like "a blow torch being waved up and down" the length of the wound, as Sarah described it. Narcotics take about that long to kick in, so the Percocet she then received on request couldn't rescue her from the intense suffering she had to endure. Why isn't there a standard procedure in the plastic surgery ward to administer a narcotic 30 minutes before bandage changes, just like in Surgical Ward A at the same hospital?? I posed this question, perhaps a bit more diplomatically, to Sarah's surgeon, and he shrugged in a "hmmm, that's not a half-bad idea" kind of way. Hopefully they'll institute that policy in the future. Anyway, Sarah's is doing much better now, and after a visit from an acquaintance who also got necrotizing fasciitis after a hernia surgery at Soroka (in 1994/different surgeon), has overcome her apprehension about coping at home. The 1994 NF victim lost all of his lower stomach muscles and part of his lower chest, was hospitalized for a longer period, and then on top of all that contracted bacterial meningitis, damaging his right hemisphere and leaving him with left-side paralysis. After 3 months in Soroka, and 6 months in the Loewenstein Rehabilitation Hospital in Raanana, he recovered full use of his left side, and is active and healthy today. Sarah learned a lot from this story, and especially that she's fortunate to have not had more damage, and that she should mimimize her risk of infection by coming home tomorrow, even if it means not having nurses and doctors on-call around the clock. And then there's Hilary, Sarah's midwife-nurse friend, who'll be helping us with checking and dressing the wounds. So we'll be fine. G-d willing, tomorrow I'll post a description of Sarah's homecoming!!! L'hitra'ot, Robert


It turned into a huge trauma that I had to work on (Shuli, you helped me through that with EMDR! Do you remember?). Having that bandage ripped off, the whole scene and details around it were very, very traumatic. I hated the plastic surgeon for that.

So, this weekend, my friend Hedva told me something very shocking that happened in July with him, and I hadn't heard of it. Here that is: https://www.timesofisrael.com/senior-plastic-surgeon-kills-himself-in-soroka-operating-room/

That was my surgeon... so, maybe he wasn't playing with a full deck the whole time?
I feel bad for his wife and two kids.

There but for the grace of G-d go I.

I can't do this too much longer

You know, I can handle a lot of stuff. I mean, a lot. You guys read my blog, you know what I am capable of. But piling on a lot of pain, I can't do that too long. I'm out of the game.

I'm in too much pain. This belly problem has not yet been solved. Things have been found, but no decisions have been made. Yes, there is a gall stone, that could be the cause. There is some gynecological stuff going on, but I really don't think that is what is causing all this pain. I see that as "the devil we know"... endometriosis, fibroids, cysts.... it couldn't cause this kind of pain, or loss of appetite. I've known the endometriosis pain for years, I know what it feels like. I know what the cysts feel like. The fibroid is new, but I don't think that is the cause of this pain, I just don't think that's it.

I saw a gastro doctor last week before Rosh Hashana and he wrote a list of a whole bunch of other tests to get done. I'll get to those this week. Most of them tomorrow- blood test, poo, and an upper abdominal ultrasound, also tomorrow. I hope (in a weird way) that we get some answers from that. I can't go on like this with no answers. I'm really functioning at a low level. I'm treading water so long that I completely forgot that I actually love swimming. Soon I'm going to forget how to.

I can get up and get around. But with pain. I got to shul (synagogue) on Rosh Hashana, once, for a few hours, but barely could pray. Too much pain. My prayer book barely got used this holiday. I did make it to our friend's house, and we also did have friends over, and I was around, but not really. One meal we hosted good friends and I had a migraine on top of the belly pain so I wasn't there at all. I missed sharing our traditional Rosh Hashana meal with them. It made me so sad.

Speaking of migraines, lately it seems that my headaches are winning the tug-of-war with the Topomax.... I don't know if that means we'll have to raise to dose or what. Every day now for four or five days I've had some sort of a strong headache. Twice I could call it a migraine, but not Large Scale. For a while there the Topomax was totally winning the tug-of-war. I can't help but wonder if whatever is going on in my belly is connected to headaches as well.....

It's really true what they say that if you don't have your health, not much else matters.

I mean, of course life matters. My family, it all matters intensely. But living in pain 24/7-- THIS level of pain, I didn't sign up for this. I'm used to low level pain, in my hips, my knee, on my skin graft, pain from the mesh- localized, deal with-able. I can't do this too much longer. I don't seem to have much choice, though, do I. I haven't even started the game of trying to see which pills may or may not take it away, because that is a slope that I have lots of experience with.... that could also land me in the hospital with rebound headaches, and my body getting too used to analgesics. Been there, done that. I am just waiting out these waves- tidal waves - often just steady gushes of pain in my belly. Today is the first day that lying down is not fully taking the pain away. NOT GOOD.

It's very lonely.

We just have to keep doing tests and hope we find an answer. And pray that the solution to FIX it is relatively simple.

But knowing me....not much on my journey to health has been clear or simple in the least.

I'm kind of losing my cool about this, though. It's too much pain, for too long.

Faking it

I am faking it. Faking at life. You see me, you ask if I am better from the headaches, I say "yes, baruch Hashem", and it's somewhat true. I am still getting headaches from the spinal tap, in the evenings, and my lower back still hurts where the test was done. But I won't say that. I'll just say, "yes, I'm over the worst of it. I was in bed for two weeks, but thank Gd it's passed."

That's partially true.

But the big picture? I don't know how much more I can take of strange, painful, unusual medical events happening to me on a regular basis. I mean, what's the deal?

I'm tired. I'm *exhausted*. I am having a hard time getting "up" again, in the big sense of getting up after another medical throw-down. I am having a harder and harder time justifying that I need to take care of myself, try to get to the gym, cook healthy foods. I have been doing things since the headaches went away, but it is a constant inner dialogue to push, to do, to go, to accomplish. It is physically and mentally exhausting to be constantly behind the 8-ball, so to speak. I want to stay in pajamas all day and not venture out. I feel beaten down, my spirit chewed up.

I wish I had a spiritual counselor who could help me try to make sense of my life. I don't understand. I am losing my drive, my love of life.
I used to have a rav who I would have talked to about this stuff, but he is no longer with us... (Ayelet, we miss him so much. Many times his name comes up, may his memory always be blessed).

Medical problems consume- as in swallow up and burn- any energy or life force that a person used to have. If it weren't for my kids, I'd be somewhere in nowhere land.

I constantly feel that I take two steps forward and three steps back.
Health is **Everything**.

A bizarre head injury

Still working on withdrawal from Lamictal (down to 5mg/day, down from 150). Things had been going pretty smoothly, relatively speaking. I had a *great* holiday of Succot with beloved friends, all my kids were home, and I was able to really enjoy myself without much pain or usual discomforts.

Then yesterday, out of nowhere, I was exerting myself physically, maybe a tad more than usual, but not crazy, and I got this intense pummelling headache at the bottom of my skull, in the back. It took about 15 seconds to come on strong, and it was extreme pain. Like being hit in the back of the head with a bat. Took about a half hour or 45 mins to go away after I stopped doing what I was doing. But ever since then, I've had a dull headache that makes me feel incredibly fatigued. It was all day yesterday, and so far all day today. I went to sleep with it last night and woke up with it this morning. I've been taking Advil for it, which, for me, could be problematic because of the migraine/analgesic issues I have. I don't want to set myself up for rebound migraines by getting onto daily Advil, Tylenol, or other analgesics. This is kind of crazy, right? I looked it up on Google (of course), and I think this is what is happening:

http://www.apexllc.org/articles/exertion-headaches/

It discusses three stages of exertion headaches, the first stage is when the exertion headache happens, the second stage can be daily, fatiguing headaches for up to two weeks, the third stage is return to exertion, but that could take up to two months, depending on the quality of rest the person has during recovery. Seriously? Rest for a long time? This is insane. Some people talk about the exertion headache being exactly where mine was; bottom of the skull (but my neck was and is fine). I'd never in my life felt that sort of intense, immediate pain there, and I've exerted myself, even recently, at the gym and other stuff, much more than what I was doing yesterday.

Again, this gets filed under the story of My Life since NF:

What Are The Chances?!?!?!?!?!?

Rosh Hashana 5777. About shofar, gratitude, and optimism.

It's that time of year! The high holidays are upon us. We just ended Rosh Hashana here in the holy land, and it was lovely.

The calling of the shofar was loud and clear: It broke into my praying saying to me "wake up", it said "time to cry", it said "break", it said "come together with tremendous strength", it said "LISTEN", it told me that we need to come together as a nation. The shofar blows are sometimes long, sometimes in long-ish broken sets, sometimes in short broken sets, and a few very long. God has many, many ways of getting our attention. In these days of ADD and whatnot, we need all the help we can get!!

I prayed a lot for life itself. I prayed for my husband's life, for my children's lives, and for my father. I entertained memories of my mother, daydreaming in my seat there in shul. I remembered the smell of her perfume when she got dressed up for synagogue on the holidays.

I prayed for the life of my friend who is fighting tremendous physical ailments, and is very sick. I prayed for her daughter. I prayed for my own strength of body and soul to be there for both of them.

Lots of the time I was just talking to Gd. I was in dialogue.
The shofar was at once a huge call for our nation to be strong in unity, and also it sometimes sounded like Gd crying for all that we are dealing with down here.

I feel that us Kleins are on a good path as the year starts out. The children are all in good places physically and emotionally.

I am optimistic that my personal path to health is also getting easier, with the help of Gd.
A little rundown of my varying situations would go like this:

• Steadily going off Lamictal. It has been very challenging at times (which is why I have written less recently, the withdrawal from this medicine is really nasty), but I'm getting there. I was on 150 mg's, now down to 10... but many websites say the last 10 are the hardest. I've been on it for nine years.
• lymph edema is unfortunately back with a vengeance. The pressure garment is no longer helpful. It's very sore and swollen where the lymph nodes were removed because of NF. I have to go back to lymphatic draining sessions. On the one hand, I know that the treatments will help, I've done them on and off over the years since I've had NF. On the other hand, I am not looking forward to them because it eats so much time from my day. Going to the physical therapy building, finding parking, a 50-minute session, driving home again (or to wherever), it is a two hour affair when all is said and done. Yet another reason I cannot work.
• headaches still about twice a week, but can be treated with Excedrin or Advil and it usually works.
• throat click problem still there and still very bothersome, I just don't write about it because it looks like there may be nothing that can be done about it. (this is the complication after having last year's surgery, the intubation tube caused a dislocation of something minuscule in my throat and I get a click in my head, which is palpable to anyone who puts their finger there, each and every swallow). I went to a specialist a few weeks ago, and he suggest another specialist who has a months-long appointment list. I took an appointment with specialist #2, but it's in March. Whatever. It's a big annoyance, but since it's not dangerous, and doesn't cause pain, it doesn't get priority.
• hips functioning well, very minimal pain usually.
• I need a knee MRI, praying for no PVNS.
• tingling in right leg, and numbness in right foot when I wake up in the morning. Have no idea of anything about what is causing it. I was hoping the surgery last year would take away the tingling, but it didn't.
• Gapey hasn't been doing so well. That is the wound/skin graft/mesh site where I had NF. I have had a consistent pain nearby (above the site, in my upper belly), and I am thinking it may be a high hernia, hoping it's not an ulcer or something.

Anyway, overall that laundry list is much less serious than it used to be. I am very, very grateful for that.

Things are pretty good. I have so, so, so much to be grateful for.

My little guy, Azriel, just turned 11 last week. Dovie is almost 18 (O. M. G.), Ya'akov is 16, and Shifra is 13 (although she is always sure to tell her age as "almost 14".) They are the lights of my life, the blood that runs through my veins. And Robert, well, he is the glue of this family. The stronghold.

Gratitude.

Thank you, Gd, for the gifts, and the lessons learned in the hardhsips.

May all my readers who are celebrating the Jewish new year have a year of health, strength, and an abundance of love.

(and may I finish my book this year! It is going well!!)

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.

Necrotizing Fasciitis recovery: the ten year plan

If you had told me what would transpire after I had NF, and how many years I'd be really deep in medical problems, how many surgeries, how many seriously scary/dangerous medicines I'd go through in the subsequent ten years, I'd be stunned, and be convinced I'd die before all that stuff came about.

Well, it's good we have no crystal balls in our lives, because I get to be alive, I got to re-make that decision many times over the years (to stay alive).

At this time in recovery, I have "only" three prescription medicines I am on. That is pretty amazing considering some of the pharmacological insanity that has taken place over these years. I am actively in withdrawal from one of those three medicines- Lamictal. It is a hard one. Depression is hitting hard, I do not own my emotions. I haven't laughed or even smiled much recently. Those of you know know me well know that that is a very rare condition. Almost no matter what is happening, I always have some humor, and laugh out loud easily. Now, it all seems so dark. I know the Lamictal withdrawal is in the driver's seat. I can't do much about it these days. Tears are always close to the surface. Always. Of course, this time period lends itself to depression, too, even without the effects of going off the Lamictal (which is a mood stabilizer).

Taking into account that my heart has a Big Hole in it where my mother used to be, it is very hard to be in mourning. I am of course, also still dealing with discovering more things that were stolen in the robbery (more things with deep sentimental value. I'd rather have given the robbers the cash it was all worth, than have so many sentimental items taken. Now we only get the cash back from the insurance. Robbers, if you are reading this (which I *highly doubt*), here's the deal I am prepared to offer: The insurance check in exchange for our stuff. OK? No questions asked, no police. Just return what we deeply miss, that's all. Deal?

Then there's the frequent headaches. Withdrawal headaches, possibly. They come often, and although they are very difficult to go through my day with, the recent ones have not gone to Epic proportions, thank Gd. I have had one all day today, and still have it now, so I will make this short.

I dream about the next withdrawal being the sleeping pills. A *very scary* withdrawal. The more I read about withdrawing from Valium-based drugs, the more scared I get. My body cannot get into anything even close to deep sleep without a pill. It's been almost 9 years of that... every. night.
When I started it, I needed it. Raging PTSD had me not able to fall asleep, or when I could fall asleep I would often wake up screaming from terrifying dreams. I needed the pills then. My nervous system was in overdrive and there was no foreseeable way to tune it down without pharmacological assistance.

So, theoretically, the plan is to take the next few months to get completely off Lamictal, then take a break, then start with the sleeping pills, if I am in a space in life that will allow for it.

That would leave me only with one prescription drug... Cymbalta. It is for depression as well as helping the nerve pain I have regularly. So far in my 10 year plan, I don't foresee going off that. I think it is synergistic with my body's needs.

At some point in there I will decide if I will go on the daily-preventative-migraine medicine my neurologist recommended. I was already supposed to have started it. My gut instinct is to hold off. If my headaches are under control with the occasional swallow-full of analgesics (Excedrin + Advil together), I am allowed to take them twice a week, but not two days in a row. If the headaches don't get worse than that, I don't want another medicine permanently in my system. On the other hand, it may stop the migraines completely and I'm being narrow visioned here. I am just reticent of starting up a whole new drug. I want detox. I don't want to be a lab rat. I don't know what the new medicine might do to me with the side effects, and after all these years, I'm kinda 'over it' with experimentation. So, we're putting the new migraine medicine to the side. I don't have to decide about that today.

So, as I see it, with the ten year mark coming up in May 2017, I may be off two out of the three remaining prescriptions. The ten year plan.

I am already starting to see light at the end of the tunnel, but it is still very, very dark in here.
I started working out again at the gym, though, and that is very positive. Still doing Tai Chi, and I'm getting into more consistently writing my book, as well.

Weaning from the meds is the home stretch... with the help of God.

And with the help of all your support. Thank you, guys, for hanging in here with me. You mean the world to me. You are all manifestations of Hashem in my life. Support comes from Him in many forms. You, my caring friends, are certainly one such form of support. I am presently looking you in the eyes and thanking you.

weaning off Lamictal, 2nd attempt. (nasty drug)

Blog entry #1003. Wow. That's a lot of writing. A lot of living.

When I woke up this morning, feeling the familiar dull pain behind my eyes that grows into a mild headache for the past week (or longer), I wondered WHY. It is so tiring and debilitating to live with a dull headache on an almost daily basis.

This round of headaches is most likely from the weaning I am doing from the Lamictal. I am supposed to wean off of it in order to start a daily migraine medicine. The irony of it all.

Last time I tried weaning from Lamictal, about five years ago, it was horrendous, and I couldn't go through with it. I had to go back on it. My body literally could not function on any normal basis without it. I was hallucinating, having horrific nightmares, vomiting, having anger that is like an out-of-body experience, and finally a sort of psychotic break that made me go to a specialist who told me not to go off it. Not yet.

I researched my blog to find a few posts about it, back in 2011:

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

November 30, 2011:

A few weeks ago I wrote about an awful day that I had regarding the wean off Lamictal. I am referring to this post.

Well, that particular day was hell.

I had what felt like a psychotic breakdown. I can't write all the details. I didn't have enough Lamictal in my system, and whatever it was that the Lamictal was stomping down, came up for air. Call it PTSD, but whatever you want to call it, it was deep, dark, and bad. It was triggered by a friend who was angry at me. I couldn't digest that anger like a regular person would be able to. It wasn't terrible anger, just your run-of-the-mill built-up anger from a friend to a friend. These things get worked out and pass in good friendships, like this particular one is. 

But that day, with the Lamictal at an all time low of 5mg (down from 150mg, mind you), I broke at the appearance of this friend's anger. It was a day that, before this phone call, I had been dealing with nausea, throwing-up, and hallucinations from the withdrawal. I later apologized to her for having my breakdown "on her".

The break was horrendous. I couldn't write about it then. Only yesterday, at my psychologist's (Lily, my once-every-two-weeks visit) office did it all come up again.

The next day after the psychotic break, as I am calling it, I went to a specialist; a psychiatrist who specializes in psych meds. He simply told me that: if it is awful on this low dose of Lamictal, than go to a higher dose. He explained to me that not everyone can go off medicines just-like-that. What about the contraindication with the Lyrica? Well, he said, on a low dose of the Lamictal, it isn't so bad. Is it *ideal*? No."But", he said, "is any of this ideal?"  Any other drugs he thought of to switch-to would have been, he said, much more toxic for me.

So I am now on a low dose of Lamictal-- 25mg. I am mostly stable, thank Gd.

But, I am more tired, and I am more depressed. That very well be because of going down so drastically on Lamictal. I haven't been depressed like this in a long time, you know? I'll make an appointment with my regular psychiatrist. It's just that I don't like her so much, but she is the drug decision-maker.

None of this is ideal. 

~My pain is, I'd say, 75% under control. The Fentanyl patches are at the right dose, thank Gd.

~The new cream seems to be the right one for Gapey's perma-rash... it is getting lighter and doesn't hurt/itch anymore. The graft is getting better....

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

There are many articles and blogs about withdrawing from Lamictal. It's pretty nasty stuff. Here is one of the more scientific ones: http://www.lamictalanticonvulsant.com/withdrawal.html

For many years I have been taking 150 mg per day

I have been on it for NINE years. One attempt at going off, and I couldn't do it. I was on Fentanyl at the time, though, so that may have complicated things. I have had 150 mg of Lamictal in my system more or less for the 9 years since the PTSD came about.

I recently got to 50 am/50 pm, which is what I am supposed to be on in order to start the migraine medicine (Depilept). But as I am starting the migraine meds, I am supposed to keep weaning from the Lamictal until it is totally gone.

For a long time I have been convinced that I no longer need the Lamictal, but there is always too much going on in my life to randomly wean from such a strong drug. I have been through many weanings of hard drugs, we know that. It always sucks, we know that, too.

I am having some adverse effects from the Lamictal weaning, mainly headaches, which I have so often anyway that I don't know what to attribute them to. Yesterday and today, though, I had unbelievable tiredness. I basically slept all day today, but also needed analgesics to ward off a migraine. I took a sleeping pill in the middle of the day, which I never do, but I knew I needed deep sleep or the migraine would come on strong. My body literally forgot how to sleep deeply on it's own. I honestly do not know how I am ever going to go off the also 9 years of sleeping pills. It will probably be the next weaning. I am terrified of it.

Yesterday a friend came over. She has also had her share of horrendous medical things. But she went right back to work as soon as she could. She has been through a lot over the years since her medical crisis, but through it all she maintained her work. She told me very strongly that my biggest problem is that I never got back to work. I need to work, she says, in order to get back on my feet finally, and be back in life. I tried to explain to her why that is OK for her, but it hasn't been successful for me. She admitted that she doesn't have the medicine thing going on... she never had to take any hard drugs after her medical crisis. She also never needed another operation since that one. I've had 7 others, and lots of hard medicines. It's not a competition, but it is hard for me to come to terms, STILL, that I do not work. Especially because I miss my work, and know I'd be good at either of them (my careers) if I were to return. I tried to explain to her that I really cannot be responsible to someone else besides my family. That I can't always show up, no matter how important the expectations are. On my plate now is all I can handle. She says that if I had more on my plate, I'd handle it, too, it's just a matter of perspective.

But she doesn't have my particular set of circumstances. My problem is that I can't say that it's because of this (X) condition or disease that I am not working. I don't have any chronic diseases or illnesses. I don't have a label for why I am how I am. I just know that ever since I had necrotizing fasciitis in 2007 I have never been the same. Serious diseases and surgeries throughout the years, the medicine trials, going on then off them, the consistent pain, it all takes a terrible toll on one.

Oh, speaking about pain, my newest surgery on the right hip (not quite a year ago) is hurting a lot these days. I assume it is from the weaning. When I weaned from the migraine analgesics also the hip pain flared up.

And the restless leg syndrome is alive and kicking... also a result of weaning. Makes sleeping just that much harder. Nervous systems do not like weaning from drugs.

My fantasies of working again are ruminating in my head. I could do birth preparation courses... that is on my time, not answering to someone else's schedule. I built an awesome course years ago.
About playing music again, I feel it is too big of a job. Hard to get to a decent level again, and too many people to be answering to, too many people depending on you. But the question is, should I push  myself to work? I haven't yet. My kids are my work.... and it's quite full time.

My health is my work. I wish it wasn't. Maybe when I am off the Lamictal, and if the migraine medicine really works as a prophylactic, I may be available to work again. One day at a time. The hill before me is weaning off the Lamictal... and I foresee it being a very difficult climb. But when I get there, I will be so relieved. I came off of five years of Fentanyl... a class "a" narcotic. I can do this. I hope. It's scary, though, knowing what I know about this particular medicine.

I need to get back to the gym.

My mother passed away about 7 weeks ago, and I am still in shock, and at times a bit like paralyzed with that reality.

My house was robbed, and my gym clothes have mysteriously vanished. Completely vanished. The robbers stole many types of things that robbers steal, but my gym outfit? Yet, I cannot find it anywhere. I had to put back together my closets, one piece of clothing at a time after the robbery, I know exactly what is in there. I have checked everywhere. Really? Steal my gym clothes? Well, we'll put it on the insurance claim.

I can go back to the gym anyway, And go I must. It'll probably help the leg pain, too.

I gotta say, things are really rough

Definitely a rough patch over here.

Very rough.

Yes, I know things could be much worse, so having acknowledged that, let's proceed.

Cleaning up after the robbery has been awful for me. I had no idea how difficult it would be. Robert has been helping, too, of course. It seems easier for him. He said he kind of has a layer of teflon; things roll off him easier than they do me. In general he takes life with less angst than I do. Thankfully.

I have been going very slowly with these messes the robbers left around the house. Mostly concentrating on my bedroom, which got hit the worst. It's a huge bedroom with a lot of stuff stored, it is a lot of work. At this point, I miss my organized house more than I miss the things which were stolen. Organization in your outer world helps in organizing your inner world. It's so true for me.

Every mess I tackle comes with anger, sadness, and a kind of repulsion that the robbers disgusting hands were on all my stuff. That's what everyone means when they say it's a huge violation.
I've had a few bikes stolen in my life, but in all the numerous apartments I've lived in, including inner city Boston, the poor side of Cambridge, and inner city Manhattan, I've never been robbed. I guess I've been lucky until now.

It'll get done. We are almost there.
Then we have to make a claim to our insurance, get reimbursed, and move on.

I'll miss the silver kiddush cup we had under our wedding canopy for our marriage kiddush (which we used every week for 18 years to make kiddush every Shabbat), all the children's "bechers" (silver kiddush cups without stems) with their names engraved on them from when they were born; my parents bought each one of them when the kids were born. The set of cute small cups from my brother Peter we use every Passover, our havdallah spice container, the kiddush cup from Robert's aunt to his grandfather (also sentimentally engraved), I could go on. Everything that was stolen was sentimental. Well, not everything, but many things. I won't even go into my jewellery. I'm sad about two things especially... an antique locket with diamonds on it; a gift from my father for my 16th birthday, a gold chain I bought with the first hundred dollars I made as a waitress at my first job in Boston; a symbol of my independence. You get the idea.

Again, my mantra these days... you can't take it with you.
I just buried my mom... that mantra is very poignantly with me these days.

On the headache front:

Not good. Pain is never good, unless you are giving birth. Which I'm not.

I saw my neurologist a few days ago. The good news is that the "thing" that the MRI showed is nothing to worry about. It's not what is causing my migraines, that's for sure.

So, we move on to medicine trials. Joy. I hate playing around with meds, trying new things. No choice, though. I can't keep showing up to the ER with blinding migraines.

I am now starting to lower the dose of one of my meds, and when it gets to a certain dosage, I should start on the new prescription for migraine prevention meds. Weaning off a medicine, again. It's never easy. This particular one, though, I am pretty convinced I no longer need. It just hasn't been evaluated in a long time, I've been on it for eight years. Time to go off it anyway. I pray the withdrawal isn't too crazy. Pray with me, OK?

The proposed new migraine medicine is something I have taken before, and I don't remember why it didn't work out. My neurologist wants to take a chance on it because everything is different now that I am off the Fentanyl, and off the daily analgesics. How I reacted before, he feels, has little or no bearing on how it'll be for me now. We'll see. Another "lab rat" few months ahead of me.

For now, I am dealing with the third day of a nagging headache, but not a migraine. Nothing is working to take it away, though. I just took my SOS steroid pills, hoping it won't turn into the migraine it feels like it's turning into.

Yeah, I'd call this a rough patch.
In a way it makes sense with Tisha B'av in a few days. Doesn't make it easier, though.

For today, Shabbat Shalom. I mean it with all my heart. Shabbat Shalom.

Brain MRI

Wow, Robert and I are under tremendous pressure these days. We are leaving for a month-long trip to the states, and things are wild and wooly. Neither of us are keeping it together so well, but it's gonna be OK. It has to be, right? We've done harder things. But as my dear friend Ken said earlier today... life is messy.

One of the zillion things I had to worry about this week was doing the brain MRI, and that was this morning. What a thing.

Oh, but I didn't write about how my hip/leg MRI came out from last week... I have the results from that. All-n-all, seems like things are OK around my hip joints. The MRI noted the lymph edema present, which I already know about and try to deal with. Problem with that is that I have to wear the pressure garment more, but it gives my skin grafts and the skin around it a heat rash in the summer months. So that makes me not wear it for a few days until the heat rash gets better, then I have lymph edema swelling again, and round-and-round we go.

There was one other small finding, but I'm completely not worried about it. It's some sort of cyst near the surgical area of my recent right leg surgery (from October).

I'll go back to my orthopedic oncologist after our trip to the states and clarify anything more. I am pretty pleased with the results, though, thank Gd. *No PVNS*. That is what we were praying for, No imminent surgery. Baruch Hashem.

About today's brain MRI... whoa. A whole new experience in MRI'ing. Wayyy not something I ever would want to do again. Please Gd I won't have to. All of you out there who have to do brain MRI's on any regular basis...? So sorry dude. It really is the pits.

Picture lying down in a head rest which encompasses your head until your face, then having a cage device put on your face which clips into the head holder thing. You can smell the cage thing, it is that close. OK, picturing that? Now that you are all snug and can't move your head or shoulders, imagine putting yourself, lying down on a stretcher, into a long, white tube, which is small enough that your feel your outer arms being pushed ever-so-slightly on your sides. You look around and all you see is cage on your face and white tube surrounding you. Claustrophobic? Problem.

Now, with all that happening, the MRI noises start. This time, it's all around your head! (I am used to the multitude of MRI's I've had for my pelvic area, hips, etc. That noise was further away from me, and my head always got to be out of the machine.) Then the machine starts up...LOUD.... zzzing...zing....bang-bang-bang for many minutes, more zingzingzing for another few minutes, clip-clip-clip-clip for another unbearable amount of time, and repeat all those sounds, randomly, for like 15 minutes. Then, you get rolled out of the white tube on your stretcher, and get shot up with contrast dye. Then you get rolled back in and another 10 minutes or so of the chainsaw sounds and jackhammering at your head, but this time with a strange burning sensation in your body from the contrast dye.

Oh, and the bit about the contrast dye? Well, today I had no veins for the first time in my life. The doctor couldn't get an iv into me, and he poked at my arms with needles 5 or 6 times, on both arms, before he gave up. He announced my veins "too scarred". I showed him the vein the other guy used last week for my other MRI (it was still a tiny bit bruised), and he tried it, but the needle bent... too much scar tissue. I've had a lot of iv's recently, in the past few months, with all the visits to the hospital for the migraines. That's, of course, not to mention nine years of manymanymany iv's and blood draws and hospitalizations. I never thought I'd be the one with no veins, though. My friend, who is a cancer patient and on chemo for the second time in as many years, *she* has no veins. Chemo does that. Well, maybe the doctor today just didn't have the "knack" of getting an iv going. I look like a junkie now, though. So how did they get the contrast dye into me? It was lovely, let me tell you. They rolled me out of the white tube, head cage still buckled tight, pulled an arm out, and fiddled again with my veins. "Don't move"... yah, gotcha doc...
They somehow got the dye in (I couldn't see how because my head was locked down), and rolled me on my stretcher back into the tube for more amplified jackhammering and zinging. This time with the weird warming sensation whizzing around my body from the dye.

I used my powers of disassociation as much as possible. I was organizing our trip in my head, making mental lists of calls and errands, thinking about the beaches we'll go to, worrying about my mother, worrying about my father, organizing life. Mainly trying not to get freaked by my encroaching PTSD from the loud noises and feelings of helplessness. I hate loud noises.

One thing happened which I am just "letting go" of, because this is all out of my hands, you know? I'm sure it was just some technical glitch or something, but in all my experience of MRI's, this never happened....

I was in the tube, and the noises were happening for about five minutes, then machine just stopped. OK, that does happen a lot, they do their techie thing. But this was a really long time, inordinately long, that I was just lying there, head in the cage, with no pictures being taken. Then I hear the outer door, the technician's room door open. I hear more footsteps into that room. Door closes. I am in the tube thinking "seems like another person just came in". There is a little rear-view mirror thing attached to the head cage thing, where I could see an angle into the technician's place. I think it is there to help the claustrophobic people to see out of the tube. So indeed, I noticed there were three people there instead of just two. They were all looking at the computer screen. Was a new guy brought in to see something unusual? The worry takes root in my harnessed down little head. Honestly it felt like forever, but it was probably just 3 or 4 minutes, then dude number three walks out, and the MRI starts up again. What was *that* about?

At the end, I was happy not to hear what my little brain feared: "you have an aneurysm, you need immediate surgery". Read again- I did *not* hear that from the technicians. But my mind went there. Tricky little things, these minds we have, even when buckled down in a cage. *Especially* when buckled down in a cage.

At the end of the whole thing, I asked the technician if that big break was anything to worry about. They said that they are not allowed to say anything to the patient about the test. They are just the technicians, I need to wait for my evaluation to be ready in 7-10 days. I then said I am flying overseas in a few days, and I asked if there is anything I need to know about. Again, the mantra: you will get your results in 7-10 days. "Have a good trip". Okee Dokee, techie man, thanks! I'll go do that!

And now my friends, I am exhausted. I have so much more to document, but not enough time in the day. I honestly don't know if I will find any more time before we leave on Sunday morning. I stole this time from myself; it could have been my resting time. But I needed to write.

And with all this? Just the tip of the iceberg. It's been a crazy time period. I have let important people down because there is just too much on my mind and heart. I hope those people really forgive me.

My mom is not doing well, over the last few weeks there has been a drastic deterioration. She's not the same mom I left last summer. She isn't communicating much anymore. Sleeps a lot. Very sad for my kids that they haven't seen her in 2 and 1/2 years (at least that's true for the boys. Shifra and I were there last summer.)

What happens if I get a mega migraine in New York? Or any other destination? I pray. I wait it out. Maybe I go to the local ER if I just can't take the pain any more. It's out of my hands. I'll have the evaluation of my MRI from today in 7-10 days. I have access to it on-line.
The rest of it, it's out of my hands.

We did an awesome thing, though... we rented a house on a lake in Connecticut. Just for the 6 of us Kleins. You see, during the year, my older boys learn out of town in Yeshivas, we only are together Shabbats, and not even every Shabbat, at that. We have not spent quiet time together as a family in a long, long time. This house we are renting is right on a lake, and there are canoes and boats for us to freely use. It's called chill time for the Kleins. I am so looking forward to that, you can't imagine. I NEED it desperately. I want to coast on the gentle waves in a canoe, and just listen. Heaven. Quiet, clear, water. It is what is saving my sanity on this trip. I pray for that. I live for the water. I live for Torah, and I live for Hashem. And my family. Especially my family.

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

ps- I had to totally go off the medicine that my neurologist gave me which was meant to be protection against the migraines. It gave me awful tremors in my hands, shortness of breath, weight gain, and other undesireable effects. I now have no medicine at all for the migraines. Hashem, please protect me and hold me in Your hands.

Progress and setbacks

Headaches are back. Not (yet?) as intense as they were before the "break" (with the steroid treatment and afterward), but they are back.
(good news is that the flu only lasted two days....)

My neurologist had directed me to raise the dosage of my nerve pain medicine, and that would be the prophylactic measure against the migraines. He said to raise it quite high. I had started doing that, incrementally, and when I got to 75mg (aiming for 100mg), a tremor started to appear, I could not keep my hands steady. This has happened to me before when I was on a different nerve pain medicine called Gabapentin, and I had to go off of it. There are many other side effects I am also experiencing with this high dose, as well, like shortness of breath (it makes me feel faint), pins and needles in my legs and feet, weight gain, and others.

So, I reduced the dosage again. Tremor is almost gone, breathing freer, thank Gd.
It's all just one big yo-yo.

Here we are again with no protection when I feel a migraine coming on.

We are headed to New York in a few weeks... I can't say I'm not a little worried about the what if's about being away. But it's out of my hands.

Good things are happening, too.... on the "good" days for me, when I have no pain or headache, I am on top of the world. It is a really new experience for me to have days- quite a few in a row- that I honestly have no pain. At all. I had forgotten what that felt like, to have no pain at all. Those days are miracle days for me. I milk them for all they are worth, and get into bed at night satisfied and optimistic.

Last night we went to a wedding, and Robert and I went together. I know that sounds to you like a given, but it occurred to me that I haven't been to a wedding in a loooong time. Usually I have to
bag out because I am some sort of sick. I have missed a lot of celebratory events and special occasions because of being chronically not well. It comes with the territory.

The wedding was fun, I danced a lot. Nothing hurt.
Today, however, I am paying for it I guess, with a headache. I realized in the car home last night (an hour and a half drive from the wedding) that hearing people talk in the car was just too much stimulation for me. It was actually challenging to be in the car with conversation happening, after just having been at a lovely, but loud and busy wedding. I have a deep need for quiet. It wasn't always that way,

OK, I have to go to sleep now. Unhappy headache hanging around.
Tomorrow I am driving into Tel Aviv to accompany my friend to her oncologist appointment. It's gonna be a long day.

I hope the headache is gone after a night's sleep.

My night with the Rocket Man (and other less important details....)

That was FUN!!!

Elton John, as seen from the stage in Tel Aviv

Elton John, 69 years old, still has it! He may have chickened out of using his upper range, or it may have betrayed him in his later years, but yes, he still has it. He can still rock! It was a great concert. He wore a blue sequined long dinner jacket, matching blue pants with sparkly stripes, and bright pink platform sneakers. Oh, and of course, sun glasses. Not the big plastic white, or red ones; no feathers or rhinestones, his glasses have mellowed over the years, but he's just as iconic as ever. Much of the concert was songs that I knew. Each piano introduction sparking immediate memories of the song coming. That was great. He has a lot of new stuff, too, and I am not familiar with that. His newer stuff is kinda bluesy, I loved it. When it came time for the encore, I yelled from the bandstand where we were sitting "Crocodile Rock!" I didn't want the evening to end till I heard that. He must have heard me... because he played it! I immediately jumped up and started grooving to the song, and even Robert joined me. It made my night!

Certainly puts a new feel to the holiday of Lag B'omer for me.

HUGE loving thank-yous go out to

Adina and Elli, Ari and Chaim, Bracha and Macky, Dov V, Emily and Andy, Gabi and Haggai, Idit and Gordon, Jodie and Ken, Judy and Joe, Linda and Cliff, Lisa and Moshe, Marne R, Miriam and Jeff , Peter Kashin, Rivka and Steven, Ruth and Moshe, Sharon and Asher, Sharon and Neil, Shlomit and David, Tom Kashin, Michael and Lisa, Hedva and Jonathan.

"I never had me a better time, and I guess I never will!" (...from Crocodile Rock)

And I learned something new...

...that blinking/flashing lights can trigger a migraine for me. This was never true until a few months ago, when my migraines were getting really bad. I had been suspicious that driving at night gave me headaches, but I had so many headaches all the time, I couldn't tell what was a trigger and what was a result of already having a headache. At the concert, just for one song (thankfully) they had flashing lights, and from that point on I had to wear my sun glasses. (OK, actually, honestly, I just wanted to be like Elton John and wear my sun glasses. This is all just a clever story designed to justify my bizarre new habit of wearing sun glasses occasionally inside and/or at night. )

Since I had seen my neurologist the same day as the concert, I was freshly equipped with the assurance that taking Excedrin (or any OTC analgesics), up to twice a week is OK. I showed him my log of headaches since the hospitalization, and we counted eight days (in three weeks) which were headache-free. Not a terrific track record, and in his Israeli accented words, he threw in the phrase "you're not yet out of da woods".

So, when I felt *it* coming on at the concert, I took Excedrin. I had brought it with me just in case. I see that stuff as if it's poison, though... like if you have had food poisoning for many months, and you get better, then someone makes you that same food that made you sick, but beautiful and freshly prepared, you just can't eat it, no matter what. It brings bad associations. But, I took it because Dr. Ezra (neurologist) said it'd be fine.

It didn't help anyway. :(
By the bus ride back I had a strong headache, and by the time I crawled into bed, a migraine. It's interesting to have a migraine *and* Elton John songs going on simultaneously in your head. Medicated myself to sleep. I tried to get up in the morning; we were supposed to go back to Tel Aviv to renew the children's American passports for our upcoming trip (July). To do that, you have to bring both parents and all the kids who need passports. I woke up still with the migraine- that is the worst. There was no way I was going anywhere. Robert took the chance and went anyway. It is not so simple for all our kids to be in the same place at the same time during the week (on Shabbat it happens a lot, but can't get any business done on Shabbat, of course). So, Robert took the four kids to the Embassy. (I have to go to Tel Aviv myself on Tuesday just to sign the forms so they can process the kids' passports. Bleh.)

So after they left, I thought I'd sleep till noon, headache would pass, and I'd be Tinkerbell making everything perfect and sparkly for a surprise when they came home. I thought I'd have Shabbat food prepared, house cleaned, table set up for Shabbat when they returned.
Ummmmm....

~~~~~~~NOT!~~~~~~~~

Slept all day. I don't even know when they came home, I was sleeping. I never even got out of bed. Didn't eat, drink, nothing.
Again, Robert was able to rise to the occasion, made some quick chicken and green beans, threw together a soup, and planned on using left-overs. Remember, he had only returned from the US two days beforehand. Again... my hero. Thank Gd.

Since then, I've had a low hum of a headache. It's almost always there, kinda hiding out, but peeking. I am not taking anything for it, I am honestly at a loss for what to take. I could try Advil. But that is bad for kidneys. But my kidney tests came out mostly normal(ish). Dr. Ezra said I could take anything I wanted, but not more than twice a week, and not two days in a row. Maybe regular Tylenol. Or maybe nothing, I am getting used to the low hum of the headache. (but it makes me irritable) I hate taking more stuff. I know my body doesn't want it.

Don't yell at me, but I forgot to ask him about doing an MRI. He didn't mention it, and I forgot to ask. There were so many things to deal with, I just forgot. It's usually impossible to see him, unless I again perch myself outside his door on Wed at a certain time, so I guess I'll have to do that again. My next appointment isn't until August. I feel I need the peace of mind to know that there is nothing structurally visibly wrong with my brain to cause these headaches. Can't believe I forgot.

He wants to raise two of my medicines. I wasn't happy about that. I thought we were going toward getting off all the meds except the Cannabis. He said that's not his goal. His goal is for me to be functioning at a level that I can start playing horn again. I was surprised to hear that. I mean, when I met him over two years ago, I told him about myself, but haven't talked about that ever since. He had it in his mind the whole time. He wants to raise my nerve pain medicine (which I have taken for 8 years already for the nerve pain in my leg from NF), as well as another one which also works on nerve pain. I reminded him that we tried that already and it didn't work, and he answered with saying that I was on opiates at that time (Fentanyl), my body will react differently now to it. OK. I guess. He says that medicine that works on nerve pain will help my headaches. Makes sense, it's all the nervous system, but I just have a dream to be medication free. I don't think that's going to happen. When I asked him about the sleeping pill issue, he said to be patient. It's not time for that.

Sometimes we have to amend our dreams. If I can be headache free, and free from daily pain, I will be a better "me". I would like very much to start playing again. Life is short.

I've decided to splurge on a series of 10 massages with my favorite masseuse. Doctor's orders.
First one is tomorrow. Can't wait.

The present, the past, and the passed (away)...

I don't want to tempt the evil eye here, but it's looking like I may be over the hardest part of this weaning process. I did have to go back to the hospital on Saturday night, with a killer migraine, though. That was the last migraine I've had (but it's only Tuesday). I had to go to the ER because I had no medicines to help with the migraine. It got really, really bad again Saturday night. This time, there was a neurologist on duty in the ER, and he made a plan about how to "break the cycle" of migraines and rebound headaches. They gave me a choice to be hospitalized again, but I didn't need that, they gave me what I needed to stop the pain. More importantly, I have some meds to deal with it if it happens again. They aren't great medicines for me, but it'll get the pain down without putting the medicines into my body that I just got off of. We still have a lot to do to figure out if there is a known cause of the migraines, but whether or not we figure that out, the fact remains that I have to manage them when they happen. I'll see my neurologist next week, and probably have an MRI... which could take a while in this country.

Currently, we're counting two and a half days with no headache.

To make matters a little more (but not terribly more) complicated, the company which is supposed to deliver my medicinal Cannabis messed up my order, and I am now completely out of CBD until next week, if I want it delivered to my house. I can get it earlier if I want to travel into Tel Aviv to get it, but of course, that could very well cause a migraine (especially in the present heat wave- high yesterday hit 111F!!). So, now I get to see if I have a withdrawal from *that*. So far, I haven't. Interesting, right? I just had to stop taking it, cold turkey since Sunday, and no withdrawal symptoms. I don't know where I stand on the whole issue of the Cannabis.... it never helped my headaches, and I felt that I am just needlessly putting another medicine into my body which I have to keep up with and spend money on. And my body is so clearly telling me to get off everything, I have allergies to a ton of medicines. I actually need two red bracelets when I am in the hospital because one doesn't have enough space for all my allergies. I feel that I need to try to clear my system of it all. It's NINE years now since I had NF. Now is the anniversary. I've been on and off many, many medicines over these years. I feel that it would be not just a physical freedom to be off of them, but an emotional one, also. In a big way. That is, at least as many of them that are wise to get off of. So do I need the Cannabis? I haven't gotten off sleeping pills yet, that is my next hurdle (but not at least for a few months. I am hardly stable yet from the migraines). Maybe it'd be good to have the Cannabis to help that weaning, but then, well... then I am on Cannabis. But maybe Cannabis can be the absolute last thing I'll go off of? Question is, how much is it helping me? It's the first time I've ever gone off a medicine cold-turkey and not had a withdrawal. I was on it for about a month. Well, I'll get the delivery on Monday. I'll take it for the next month. One thing at a time. It does help me sleep, actually.

Thanks for thinking this all out with me. I'm getting there.

I'm getting there.

Next Thursday is the anniversary of when I woke up from the coma. It's the holiday of “Lag b'Omer”, traditionally for me a day mixed with gratitude, sorrow, pain, and yes, trauma. All I have to do is picture me back there, and picture how it felt when I first saw my body after NF ravaged it, and hundreds of different flashbacks come flooding in. I choose not to dwell on them, and am grateful that I have that choice now. One cannot always choose when to open the gate to trauma and when to keep it closed. I worked hard for that choice.

This year I have a special event that will help change the face of the holiday for me... the Elton John concert! The gift from so many of my friends who have seen me through all this, through thick and thin... it is no coincidence that it is on Lag B'omer. It's another “tikun”... a repair for the damage done in the past.

(did I tell you that my friends also collected enough for a pre-concert dinner? I am sooooo excited!!!)

And also no coincidence, the concert is after my neurologist appointment, on the same day. Please Gd, my brain nerves will cooperate with my plans for the day.

It's all good. It's all about repair.

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

Update, on Wednesday:

Headache.

First major-ish one since Saturday night. I took the steroids that hopefully will help soon, and I have another line of pain management as well, but not ideal for me.

I had the beginnings of this headache yesterday, but it didn't grow bigger... I didn't take anything for it, and used my meditation recording to go to sleep. Tonight it grew bigger. :(

Not at epic levels, but it makes me so nervous, which of course makes pain higher.

This update also includes some very sad news: Robert's aunt, who was really an aunt to us all, passed away this morning. She had been sick, and we expected it was going to happen, and she went quietly in her sleep, at the ripe old age of one-month-short-of-her-90th-birthday. We were planning a trip to NY to celebrate her 90th birthday with her next month.

Now Robert is on his way to the US for her funeral. His aunt Ahuvah (his mother's sister) was a very major part of the family. In many ways a matriarch, although she never had kids of her own. My kids are very sad about her passing, and that they hadn't seen her for over two years (except Shifra & I, who saw her when we were in America in August). She is the last one of her immediate family.

Tonight, as we were walking the dog, Azriel asked me "what if, Gd forbid, you get sick while abba is gone?" It was a poignant question. Just last week I was in the hospital. My unspoken words were that I am nervous of that, too. They depend on Robert for the backbone of the family. I can very much be that, also, but things are much more fragile with me. Let's hope things will be stable. I am strengthened knowing I have a tremendous loving, caring community, and many friends surrounding me. Everything's going to be OK. Whatever OK means at any given moment.

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????