Lag B'omer 2018, coma-versary.

I haven't written in a while.
I haven't felt inspired.
The honest truth is that just living day-to-day is a challenge.

Yes, I am getting better... that is no small feat. My abdominal pain, for the most part, is tons better (but not totally healed), and I can do more. I can be on my feet more, and be in life more. Lots of things are getting better; the treatments I am doing with the Doctor of Chinese medicine (Dr. F) are all encompassing, and the medicines themselves are numerous and, I think, working. The treatments are HARD. I am often yelling out in pain, sometimes crying. It's not for sissies, doing this stuff that we have to do to heal my abdomen (and my hips, knees, ankles, it's all a big mess of scar tissue and things out of line because of all the surgeries). I often have quite alarming bruising, and am left quite wrung out the next day. But eventually the pain is lessening. The man knows what he's doing. It just hurts like h*ll. It's real external surgery... with long needles sometimes, extremely strong hands, suction cups, and all sorts of manipulations. I often grab onto the sheets around me, bracing myself with the pain. Sometimes I can try to relax while what he is doing is hurting, and he can accomplish more when I can. He can break up more scar tissue if I can relax... easier said than done.

My headaches persist, unfortunately. We're working on that. Mostly if I decide I can't take it anymore, I take analgesics when possible (only twice a week so I don't get rebound headaches), and my new "toy"-- a vaporizer for my Cannabis helps out as well. Yes, I finally got my licence renewed, and got what I need.
But there have been some pretty massive migraines of late... a few each week.

So, although there is an upward trend that things *are* improving, I am still often very sad, or angry, and hard to be around. Hard to be with myself, too. I'm going through the withdrawal of my pharmaceutical meds, also. I am on four main medicines (the "conventional medicines"- not the Chinese meds), and they are all in various forms of cutting back. So yeah, my mood is going to waver-- a lot. It will even out after all is said and done, but this is a very hard stage. I am happy to be getting off them, it's been a long time coming. And for the most part (if I don't have a headache) I have been sleeping well, on *much less* sleeping medicine than I have taken since I got sick 11 years ago. I have a schedule of when and what to cut. We are doing it wisely, and with precaution, and lots of support. It's a good goal, but a hard journey.

I also seem to have a type of anemia. According to all my blood tests always, finally Dr. F told me the type of anemia I have... it's not classic anemia, my hemoglobin is OK at 12. It's called Pernicious anemia. Intrinsically it is because of the lack of ability for the stomach to absorb vitamin B12. But simply taking B12 isn't the answer (I've tried that before, does nothing). So again, a milti-faceted issue that we are dealing with in my treatments and Chinese medicines which fortify blood. It could be a contributing factor in my constant unrelenting fatigue, and possibly the headaches.

Tonight on the Jewish calendar marks the day, 11 years ago, that I woke from the NF coma. It is one of those Highly Significant Days for me that I will never forget. My eyes opened, I blearily saw Robert standing next to me. I couldn't feel anything in my body, and could barely move my limbs. I couldn't talk because I was on a respirator. It was frightening. The nurse alerted Robert that my eyes are open, that I am waking up. He turned to me, and started crying, and hugging my shoulders. He told me not to try to talk, and not to be scared. The doctors said I had a bad infection but it is under control. He also told me that that was the very minute that was organized by everyone who was on our CaringBridge website to say a chapter of Psalms together, at this very minute. All over the world, friends and loved ones were reciting the same chapter of Psalms, and that was when I woke up. Did you just get chills down your spine?

Robert then told me it was the holiday of Lag B'omer (as it is tonight), which was four days after I had gone in for the exploratory surgery when they found the NF (which itself was 4 days after the original hernia surgery). That was shocking... four days happened in the world that I slept through completely. I had no idea that the whole country [world, actually] was praying for me... one very long Shabbat. I still had no idea of what happened, what bodily damage I would have to contend with, none of it. Just that Robert told me I had an infection, but now I'm out of danger. I didn't feel any pain... I drifted back into my medically induced coma. Next time I woke up I saw my parents walking into the ICU. They were told things were bad and that they should come say goodbye.... what a 12-hour-flight that must have been. My mother threw herself on top of me crying "my baby, my baby". I was awake, they had just taken out my breathing tube. My father immediately started grilling Robert for answers.... what a thing. I have so many memories. They all come flowing back during this time period. My body remembers, my mind remembers. I wrote about other details in my book, which I hope to start up writing again.

I guess what I really want to say is... is... so many things. I want the end of my book to be that I forgive the surgeon for his mistakes (plural). But that's not my reality. I can't forgive him. I want to, but I'm so embittered by what happened to me, which he could have prevented. That just may have to suffice for the end of my book. We'll see when I get there.

Even though my pain situation is improving, I still struggle every day to: get out of bed, to eat properly, to deal with my fatigue on a constant basis, to deal with migraines coming & going and the aftermath there of, I try to do a yoga routine. I take a zillion little pills three times a day and pray they will help my body to have balance, to heal. My abdomen still hurts, my skin graft causes me problems, it's a constant thing. I can't play my music, I can't help birthing women. I lost so much.

I pass a "store for rent" sign near where I live and fantasize about opening an all-your-needs here birthing store.. baby carriers, pre-natal classes, lactation consulting, doula services, breast milk pumps, all of it. I have so much to offer. 74 meters is perfect. But the thought goes right out of my head; I can't be consistent. One day I'm good, the next I'm down with a migraine or horrific pain issues. I have so many dreams. I still get messages about playing in orchestras. Every day that I think "this will be the day I play horn again", something happens. Sometimes it's with one of my kids, but usually it's a problem with me. This week I went to Jerusalem for two treatments... that also eats a lot of time (and money).

My whole life & time is taken up by trying to get healthy, trying to stay in the world. You guys who get to work your careers, or jobs, and have a life that is quite routine... you can't imagine. You can't imagine what this life is like. Constantly not knowing what is around the corner, not knowing if I stay up that extra hour will cause a migraine the next day. Not knowing if I'll be down the next day or up, and for how long can I expect that? My kids don't get a mom who is consistent. The other day I had to shut everyone out for an entire day and night because of the migraine. This happens weekly. It's a crazy life, and yeah, I feel sad about it. I can't come to grips with it, even 11 years later. In the beginning it was even worse- hospitalizations every other month for infections, surgeries on average once a year, but there were years with two or more. Now life is much quieter than that, but I never got it all back. And I don't know if I'll ever really be out of pain. Dr. F is doing everything that can be done, and it's helping in a tremendous way. But my body got hit bad 11 years ago, and with it, my soul also.

It's supposed to be happy that this is the anniversary of when I woke up from the NF coma... in my NF support group it's called a "re-birthday". But it doesn't hold strength and courageous feelings for me like it does for some others. It holds the hard, hard memories, all of them, and the tremendous sadness of loss.

Ten Year re-birth-aversary

Ten Years.

This weekend marks my ten year anniversary of waking up from the coma when I had NF. It was on the Jewish Holiday of Lag B'Omer.

I find that amazing. I've gone through ***so*** much in those years, it's mind boggling. My book is well in process. It's just an incredible milestone in my mind, ten years, you know?

it's always good to celebrate with a chocolate cake!
and the candles remind me of the bonfires on Lag B'Omer

I am in a good place to write about how it feels to be ten years out of that horrendous disease. I'm also quite active on the NF group Facebook page (I'm a moderator now), and find it amazingly fulfilling to be with others in their stories as well. For many years I've been kind of alone in my NF aftermath struggles, without knowing many people who had experienced NF. Having the connections with the people on the Facebook page is really strengthening for me. We have so much in common, I am not isolated in the after-effects I've suffered (and to a certain extent still suffer). Other people's scars and grafts look like mine (and I am totally comfortable posting pictures to the group of my scars, which I could never think of doing before), emotional and psychological effects similar, even down to sleep disorders. It's almost as if we could write a textbook. I feel quite fulfilled when I can help people who are struggling with this. It's a bit like how I felt doing doula work as well, in that I have acquired skills and experience to give to people which makes their suffering less. That seems to be one of my callings, for sure.

I still have that abscess from the last blog post, but at the moment it's not "active". The antibiotics took down the fever and swelling for that flare-up, but I will be doing something about it at some point. I have a consult with one doctor tomorrow about it, and another consult in June if it can wait that long. As long as it's not active, it doesn't bother my life. But I feel it there, and the area is never without some level of pain.

I am playing horn as frequently as I can these days, but not as much as I used to be able to. I just don't have that ability anymore. I can't play that much. My body just does not let it happen. I am often exhausted (more on that later), and recently have developed a tremendous pain in my shoulder/neck on the side which holds up the horn while playing (left), with tingling down to my fingers. I'll get some massages, but mainly I believe it comes to tell me that playing horn is causing me tension. Tension in muscles causes less oxygen to be carried through the blood to the muscles, and they can seize up that way. It is a theory called "TMS" (Tension Myositis syndrome), a theory presented by Dr. John Sarno in his book "Mind Over Back Pain", which I read in 1990 when I was flat out with a bad back. It makes a lot of sense that I'd get TMS when I start to play horn again... lots of history there, and my own inner competition and perfectionism. It's *hard* for me to play now at the level I am at; making lots of mistakes during orchestra rehearsals. Of course, the orchestra is volunteer and amateur, so I'm not the only one making mistakes by far, but for me to hear myself this way is hard. It's all part of accepting the post- NF Sarah. But in the meantime, I am having lots of problems with my arm and shoulder, unfortunately. I hope it'll calm down soon.

I finally saw a psychiatrist last week. I've been waiting months. She was recommended to me by my neurologist, they work together.  Since it is in the HMO, at Soroka, so seeing her is free, which is good. I feel that I have already started to get out of the depression from after Sabrina passed away, but my sleeping has been awful, and I do still need different types of medicinal support. I basically haven't slept properly in many months... years? The sleeping pill I have been taking for almost ten years lost it's effectiveness, and, well, I really haven't slept deeply in... who knows. Many months, for sure, possibly years, I think.

So I tried to tell my abbreviated life story to this psychiatrist, and it got all jumbled. But she was good, and I think with her clarifying questions and seeing some of my history, she was able to prescribe a new medicine. She told me at first to take half for two weeks, then a whole one.
Well, that first half put me out for 24 hours. No joke. I did get up to eat a bit and show my face over Shabbat, but I slept most of Shabbat. I did go out for about two hours in the afternoon, but was still fuzzy and tired the whole time. Robert thinks that my body (and brain) was just so happy to sleep deeply, that it drank in more and more. I think I have been extremely sleep deprived. I know I have been. We all know I'd rather fix the problem without pills, and that goal is not out of reach, but not for now.

So the next night, after so much sleeping, I was in a quandary as to whether to take another half or not. I can't keep just sleeping, obviously. So, I cut the half pills into quarters. Even that put me to sleep and made me feel a bit woozy half the next day. I am still taking the quarter pill at nights, and I am sleeping well, thank Gd, but not feeling so great during the day. I'll give my body a bit of time to get used to it. Then, of course, I have to wean off the old pill. That'll be fun. For now they are both in my system nightly.

(This part was written on Thursday)

I saw the specialist today about the abscess. He said that with the next flare-up, I should go straight to the hospital (not bother with the doctor first) and get it drained. That is not just one little simple procedure, mind you... it is two procedures, a month apart.... the abscess needs a tiny catheter to remain in the gland to drain for a month before closure. Today it was too small for him to do anything about it. So, treatment plan in place... but not one I am so fond of. Maybe Hashem will create a miracle and make it never flare-up again. :)

Soon I'm leaving for the orchestra rehearsal, and I'm not feeling so great, and my fingers are tingling from my shoulder pain (I'm now thinking it's a pinched nerve). And I have a nasty headache.

Tomorrow morning at 7:30am I'll be doing an MRI for my hips. How's that for terrible scheduling!

I may just sleep through another Shabbat. Hard to predict.

Time was that playing an entire Beethoven symphony was just the beginning of my day, or the end of a long day, and it wasn't a big deal. *Now*, when I play with the orchestra, Beethoven 6th symphony (one of my all-time favorites) it takes EVERYTHING out of me, I can barely make it through. And then I sleep all the next day. I can barely do this orchestra thing, but I am going to keep trying until I have a good enough reason to stop.

Ten Years ago my life changed on a dime. To this day, I feel that I not only left "a pound of flesh" in that hospital, but a piece of my soul. Thankfully Hashem doesn't skimp on souls, and allows for regeneration. Shabbat Shalom! Lag Sameach!

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.

De-bugging prototype 3

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

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

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

NOT.

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

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

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

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

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

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

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

Shabbat Shalom.

Pictures from lag B'omer:

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

me & my little guy, Azriel

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

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

Lag B'omer 2014

a Pomegranate beginning to grow on our tree in the back yard. Life renews itself.

It always jumps up and bites me in the behind. I may not even be thinking about it in any meaningful way. The thoughts are those which pass through one's head, leaving behind them "oh yeah, isn't that interesting".

My emotions remember what my intellect won't uncover.
I have been utterly depressed today, crying on and off all day. Yesterday (Shabbat) I had a migraine and slept all day (and all night).

Why today?, some of you who are new to my life may ask.
Today is Lag B'omer, the day, seven years ago, that I woke up from my coma.

To many of you it would seem that this should be a happy day. Logially, It is a day of renewal, of re-life, as you will. A day of second chances and re-birth.

Well, it is all that, but for some unexplainable reason, it is a day of depression and tears for me, no matter what is going on in my real life that day.

What *is* going on in my real life happens to also be hard and sad, dealing with a child of mine who very much needs.... needs.... well, if I knew that, he wouldn't need it.

Why the tears? If I could ask my innermost secret chambers of memories, then I'd know. But I do understand, on some level.

This thing that happened to me 7 years ago, it completely changed my life, such that it has become my identity. Yes, it is my identity. People tell me to not look at it that way, that that is not how *they* see me, and that it is not my whole identity.

But it is. For me. It is my reality. And that is OK. God made my life, and I love Him for it, no matter what suffering I go through. Sometimes suffering feels like God is playing "favorites"; like He chose you because you have a huge potential.

I am trying to fortify myself for surgery in a few weeks, and so far I feel anything but fortified. I have gotten stuff done, but today it all came to a complete stop. No crash, no notification, just a stop in my life. Today.

You see, along with waking up from the coma, at about the same time frame, I also found out what happened to me, and what state I was in. I woke up not being able to lift a finger, no matter how much my brain willed it to move.

My emotional imprint is forever changed by having gone through Necrotizing Fasciitis, and everything thereafter.

I just need to be held today.
Robert just took the kids to our yearly bonfire for Lag B'omer. I am alone. I can't put on the happy face today.

He has to take them, he has to be the one, the one who keeps life pulsing, when I cannot.

the planting project got finished on Friday, and it came out beautifully:

first you pick up a bed box off the street...

then ya rip off the upholstery and paint it...

plant some of your favorite herbs and veggies

each of those little markers show where I planted melon seeds

proof that I actually did it.

 I also baked challot on Friday, and vacuumed my [very large] room. by Shabbat, though, I literally could not walk anymore. Filing project next. Should be easier on my body.)