Monday, April 28, 2014

anniversary of surgery which led to NF, rolling with the punches.

Can I just say, for the record, that it is so so so hard to raise teenagers? I'd go back to diapers and naps and breastfeeding and dealing with babies any day. I know that was physically tiring, for sure. Not underestimating that. I still had one in diapers while recovering from NF, for a year and a half after! But teenagers? It's a whole other bag-o-beans. Wow. I am having such a hard time navigating these unpaved roads.
OK, I don't want to go into detail, of course, many of you know my kids. :) But, yeah. Rough times.

OK, public service announcement over. We are returning to our regularly scheduled blog writing.

I had a great Shabbat! Even did an extra walk to visit friends, which I don't often do. One of my friends said I was "glowing". That was great. :)

It was, also, the anniversary of the surgery which led to NF.
Thankfully, at the time, that knowledge escaped me, because I am "unplugged" on Shabbat, and dates and times are less intrusive.

I actually wound up asking Robert on Saturday night, when I was on the computer again, if that was the date. I wasn't sure of the surgery had been on 26th or 27th. He confirmed that it was the 26th.
OK. Interesting.
I didn't think much of it.

When I woke three hours later, at 3am early Sunday morning, to use the bathroom, I was so dizzy I could barely stumble in and out. I thought I was just over tired, and will feel better after a full night's sleep.

I woke in the morning feeling the *same way*. Dizzy, light headed, numb in a weird way, shaky. Basically, out of my body, somehow.

My thoughts as to why this may be happening went oddly to the possibility of "body memories". I have heard of the concept, that our bodies remember trauma, that it is held in our muscle memory. I never really felt it, so I didn't know if that was it or not, but the idea popped up, interestingly enough. I called my spiritual counselor, who I haven't spoken to in a long while. I ran it by her, what I was feeling, and that the anniversary of the "beginning" is upon me. She said yes, it certainly might be what I am suggesting, just by the mere fact that I am suggesting it, that it came up in my mind. Neither of us had time to talk it through more yesterday, but we made an appointment to talk today about it.

As the day went on, it got worse. I developed a fever, and a mild headache. OK, I thought, this is turning into a flu.

Thankfully my babysitter was around and took Shifra to ballet and back, and made dinner, but when she had to leave at 7, instead of taking over like I usually do, I called another babysitter to take over. It was *that bad*.

Up in my bedroom, the fever and shakes together with the awful dizziness and headache were still happening. Then I threw up.

It was awful. I hadn't even eaten much, but my system didn't care.

Slowly, that headache was morphing into a migraine. Still with fever and shaking, dizziness.

My migraine medicine says to take it only at the onset of the migraine, and by the time I went to go take the med, the migraine was already pretty raging in me.

During the night I threw up a horrendous three more times. With still having the migraine. And fever.
I was *really* sick. Neither I nor Robert suggested the hospital, though. It wasn't scary, but I was clearly really sick. We have so much experience already with hospital ER's, we knew that there is nothing blaring about this picture. No skin infections, no certain point of internal pain. Without those things, we know to just stick it out at home until things get better... or worse, Gd forbid.

After the second time I tried nausea medicine (called "Pramine"), it finally worked. First time didn't stay in my stomach long enough.

With the Pramine and a sleeping pill, I finally got to sleep. Baruch Hashem.

Today I feel weak, muscle pain in my chest and back from all the throwing up, a bit dizzy, but my fever is down, thank Gd. Still in bed.

I have no idea what that was, but if we look at body things in correlation with emotional states, it could have been a visceral reaction to knowing it was The Anniversary.

This time period always gets to me. Maybe always will.

Here is an article that was sent to me, about a possible way to stop NF at the beginning stages, before it destroys and kills more tissue.

Before you read it, keep in mind that when I first was diagnosed with NF, and we didn't know how much it was going to spread, Robert spoke to the surgeon, suggesting something, from a layman's point of view. That was: why couldn't a strong, localized antibiotic be dumped into the wound site to stop the NF? His answer was that the infection was systemic, and using local antibiotic won't kill it.
OK, Robert accepted that answer. Why not?

Now read this, from Fox News, last year, Nov 2013.
I know it's not exactly the same, but it is the same principle that another doctor just decided to try. It worked.
Robert has thought of so many things for my medical situation that turned out to be right, after the case. Hmmmmm.....

Actually, now that I think about it, Robert has done things to advance any life situation I have ever chosen (or not chosen, as the case may be)- when I was in the Sinfonietta, he did fund-raising. When I had an active doula practice, he translated my entire website and necessary documents into Hebrew and always helped out the finances and tax issues. Now, with the post-nf fallout, back about four years ago, he was the one who did research and suggested to my pain doc to use the Fentanyl patch for my pain. Dr. Z siad "OK, worth a try". Robert always did lots of research, actually, as each medical issue rose which needed a solution. For the kids, also. Not only does he have many more family duties and responsibilities, but he still actively is looking for new medicines for me that may not have the side effects that I suffer from, and countless other things. He's an awesome, fiercely intelligent partner.
Thank you, my love.


  1. Feel good - and keep on rolling....

  2. we are rolling and praying with you!! and sending lots of love! XO

    1. thanks guys... merrily we roll along... :)

  3. Wishing you comfort and health!!

  4. What a wonderful couple. i'm inspired by you, cuz! Love, Sandy

    1. Thanks, Sandy! And you don't even really "know" me :)
      ... can't wait till we share each other's inspirations.

  5. Robert, you are an amazing husband and friend. May Hashem grant you and Sarah continued strength and shalom bayis until 120.

    Yisroel and Devorah