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.



  1. A patient of mine with a breathing disability passed away this week after collapsing at the demonstration demanding disability payments be raised to the level of minimum wages. His oxygen machine fell and broke and since he wasn't recognized as entitled to a spare one, by the time the ambulance came it was too late, the damage was irreversable. That was after too many people including myself warned him not to overdo it. But he was stubborn and just had to be there not just for himself but mainly for all his fellow-disabled... So PLEASE Sarah, don't overdo it

    1. Wow, Shanni, that is horrible. Tragic. I'm so sorry for your loss!!! I hear the warning, and am trying harder every day to be more sensitive to my own needs. Thank you.

  2. I remember reading a reprint of a WWII letter to a newspaper which went something like this: "As an amputee, I am entitled to an extra ration of soap. I recently received a letter from the Government informing me that, if I was to continue receiving the extra ration of soap, I needed to send them a letter from my doctor to prove that the leg was still off."

    Plus ca change, plus c'est la meme chose

  3. I hope the doctors get to the root of your migraines and that they can do something concrete about them.

  4. I have an easy week let me know if you want some Reiki. Just to relax or when you feel a headache starting. Even if it only helps one notch. Be well.

  5. Wishing you strength and healing!

  6. thinking of you and davening for your refua.