Monday, June 20, 2016

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.

Monday, June 13, 2016

I'll take the flu over migraines...

Nine days. That's how long it's been. Nine days with no migraines or headaches. Seven of those days were with steroid treatment. I was tapering off the steroids for the week, and now (for two days) they are finished. I pray that taking the steroids broke some sort of cycle that was happening of recurring migraines. Nine days. (but who's counting.)

Somehow, though, over this past weekend of Shabbat and the holiday of Shavuot, I came down with some sort of flu or something. It honestly feel like the energy gremlins snuck into my body and stole every molecule of energy that existed. I can barely make it up the stairs in my house I'm so tired. And fevery.

A good friend has mononucleosis at the moment, I am praying I didn't catch it from her. It's pretty contagious, and the incubation period can be a month to six weeks. I did spend time with her at the infectious period of time. I've already had mono, though. I just wonder if my immune system remembers we did this already. I also wonder if being on steroids for a week possibly lowered my immune system and made me more susceptible to catching a "bug" or something? I definitely have some sort of flu. I feel so sick, my body just feels so defeated and weak.

It's been a long, hard run of months here.
I had a plan to go to the beach today, the kids have off from school, and it's a well known beach time. But not with how I feel. One of my kids went to the beach with friends of ours, the others stayed home. I *really really* wanted the beach. I need the sun and the air. I need the power of the Mediterranean sea, I need the beach. It'll happen. Just not today. Unfortunately, Robert is feeling sick, too. Uh-oh.

Low-key is the name of our present life. Gotta keep it all low-key.
School is almost over, and we hope to go to the US in the beginning of July.

I can't make any plans from one day to the next. A friend called today to see when we can make a date to go out together. We through some dates into the air, and it ended with how making appointments usually ends when I am involved... "let's talk the day before, hopefully that will work out."

Sometimes I really do talk to Gd and say "hey, look... haven't I paid plenty of dues? What is it that you want me to be doing that I am not learning? Give me a break... pick on someone else much more deserving."

But you know what? I immediately realize that all of our trials in life are tailor made just for us. I don't know why I seem to get so many more than other people, but maybe I just don't know their lives intimately enough to see their trials. Then I usually come to gratitude. I have been the receiver of immeasurable, priceless gifts. So many gifts have been sent our way which many people who Hashem loves have not received. I realize that and I remind Hashem that I am grateful. So, so grateful.

I just wish I didn't feel sick while telling Him I am grateful. I'd love to run around in the ocean waves and show Him my love. I'd love to see beautiful sunsets on a lake while telling Him I am grateful, and thanking Him for everything. So, I'll do it from my bed. I may have the flu or something, but I am still grateful. At the very least I am grateful for nine days without a migraine. At the very most; boundary-less gratitude.

But having good health would help. I'll get there.

Tuesday, June 7, 2016

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

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


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

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

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

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

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

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

OK, he called it off.

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

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

Robert took me to the ER.

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

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

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

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

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

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

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

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

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

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


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

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


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


Sunday, May 29, 2016

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.


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.

Wednesday, May 18, 2016

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:

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.