Sunday, January 26, 2014

on breakthroughs, breakdowns, and barbering.

almost full moon, it caught my eye while I was on our upper porch hanging laundry at night. I stared at it for a long time, watching the clouds roll around. Thanks for that , Gd.

Every day I want to write a blog entry. Every day a zillion things happen to get in the way.

This week, what got in the way was getting a really good focus on doing my book! I am doing the book writing course that I mentioned in my last blog, and it is helping *sooooo* much with getting organized before the actual writing. There are awesome questions to answer, and to write as much about as possible, to help sort out all the most important things of writing your book. I never thought about any of it... I didn't have the faintest idea of where to start. Now I feel really focused and on a great roll.

There was a call-in teleconference for people in the class last week. Anyone signed up could call in to her with questions. I had questions.... boy did I have questions. Despite being cut-off three times (!), I kept calling back and she kept taking my calls and continuing to help me. I think there were about 60 or 70 people on the line. It was cool. I even got up the courage to read a piece out loud! In all these years, I haven't ever read my blog writing out loud (except maybe a few times to Robert). I know hundreds of people see it, but it is so different to read your own work aloud.

I decided on this specific piece to read over the teleconference because I was thinking about making it my introduction. After I read it (and got some awesome positive feedback), it was suggested to me by the teacher, and confirmed by other students, that it should be a prologue, not an introduction. It makes so much sense to me to do it that way, now that she suggested it.

I've had a few big breakthroughs, and I feel the "roll" is just beginning.
So, my time is more limited than ever- I need to write, and I need to get enough sleep so I can get up mornings as often as possible. I need to push the boundaries and see how many more hours I can squeeze out from my sleeping hours. I feel a new inspiration, a new meaning in my life. I feel that I could pour my soul into this, and feel alive. I feel inspiration awakening in me that I haven't felt in a long time. The problem remains that I have to take lots of time "slogging through my blogging". There is, however, a good side to that (there always is a good side to hard work... well, usually...). Each time I am triggered to look up a certain blog piece, during the search, I see other entries that I know I will want to use in another section of my book. I am no longer in fear of the enormous task of going through my blog to write the book. That, mostly, is what paralyzed me in the past. I will get what I need to extract from my blog. I am sure of that. I will stumble upon it, find it in a search, and also possibly ask someone to go through parts of it and help me out.

OK, that is good book news. Yay!!

I need to go to sleep, but, as usual, I want to chronicle some of the physical goings on also. As well as last week was for writing, it was really bad for pain. BAD. I have no idea what is going ON here.

You remember the pain that I had after the Lidocaine IV, right? That searing pain was actually on my right side- the thigh joint of my right leg. The usual culprit is the left, with occasional flare-ups of the FAI syndrome on the right (which I also had in the left, and was surgically fixed about two years ago). That time, though, after the Lidocaine IV, that right thigh joint was in shocking pain. It subsided in about 24 hours. I spoke to Dr. Z about it, and he hmmm'd and huuuhhhhh'd about it, saying he hadn't heard of that side effect, and he'd look into it.

That exact pain is no longer a stranger. It came back this past Thursday, with no trigger at all. The feeling is joint pain as well as nerve pain. Very much like what the left leg was like before the surgery. This time, though, it hasn't gone away- not in 24 hours, not in 48 hours, not yet. I could hardly walk or do anything without inordinate pain. What's up with that, we don't know. I want to go to a new orthopedist. Maybe it's time? I know of one who is the teacher of the doctor who has done my last two surgeries on the left thigh joint. I never went to him, but maybe I'll call.

In the meantime, Dr. Z and I have raised the dose of the Fentanyl patch- it's now an even 100mmg. Even numbers are lucky, right? (I started at a dose of 12mmg, three years ago. My, how dosages fly.....)
That's one of the reasons I am so puzzled by this onslaught of pain- if anything, I should be enjoying a break from the "breakthrough" pain I was having before the dose was raised.

I also spoke with Dr. Z on Friday about all this, telling him that I had a return of the "post-Lydocaine" pain, this time with no trigger. He doesn't really get into the why's of things- that is for other doctors. He is there to get you out of pain. That is what he does. He wants to try another time with the Lydocaine. I am not sure if I should. On the one hand, I had terrible pain directly afterward. On the other hand, that same pain returned without any trigger, so maybe it was a coincidence? Or, Robert's theory is that the Lydocaine dose was the trigger for all of this new stuff in my right leg- maybe some nerves were awakened or something? What do we know? Really, what does anyone know? Medicine, and especially pain medicine, is far from being scientific.

I think I may not try the Lydocaine again. I am not enamored of the idea, having a two hour IV once a week, and all the implications of that.

I also can't live life with this pain... what if it never goes away?
I think the hardest part of today was not only that I had heavy pain, but the fact that I have to say "no" to Azriel and to Shifra when they ask me to play with them. I really, really need to rest, and they tell me that it is special to play with me, Azriel wasn't so interested in playing with Shifra. This is what really tugs at my heartstrings- saying no to things that they want in order to feel my love and connection and togetherness with them. I tell them that I want it, too, but because I am in pain, I need to rest in bed. I did actually try to play Monopoly with Az after I rested a bit, but it hurt so much, any position I tried. It is SO HARD to feel like a good parent when you have to turn your kids away time and time again. It breaks my heart. Azriel gets so sad. Yes, I *know* they will be fine. But *I'm* not. Because of these problems, I don't get to play with my kids as much as I want to. They grow up really fast, and all these little times go away... *poof* just like that.

It is a major theme in my book, mothering when the mom has health problems. It's an entire chunk of my life after NF; restructuring my mothering and dealing with my children's reactions to my unavailability (which sometimes was under the guise of me being available because I am a stay-at-home-mom. But, why am I stay-at-home-mom? Because bad circumstances have visited us and left me not able to work, thereby narrowing my window of availability.

It's been a major theme in my life since I got sick. My kids, my kids, my kids. How's this all going to effect them? How can I throw off the guilt feelings of turning them down? Shifra specifically asked to play dress up (in *my* closet), or Barbie with me (which she hadn't asked for in *ages*. Azriel wanted a good roll-your-sleeves-up game of Monopoly.
I turned them both down with my heart in knots. :(
I needed QUIET and rest. If I don't get that when I need it, only bad things happen afterward. It's not worth it.

I just needed to lay prone in bed. That is the ONLY thing that helps when it gets this bad.

Today I even considered taking out a crutch to walk to synagogue. Well after I made the decision to go, that is. The pain can rule me and make decisions for me.

But today, just for today, I didn't take out my crutch, and I did use my strength to walk to shul and back. Gotta keep walking. Gotta keep walking.

Last thing- did I tell you I cut my hair? Like really short? Yup. The mood came over me. The deed is done. :)


  1. שרה, כל כך משמח לשמוע על ההתקדמות בכתיבת הספר וכל כך מעציב לשמוע על הכאבים שלך ועל הקשיים שלך בטיפול בילדים. אני מאחל לך שתרגישי יותר טוב וממליץ לך להמשיך להקשיב לליבך בקשר לטיפולים שאת עוברת. שבוע טוב.

    1. This is the translation of Aviram's comment:
      Sarah, I am so happy to hear about the progress on writing your book, and also so sad to hear about your pain and difficulties with taking care of your children. I wish for you to feel better. I recommend that you keep listening to your heart regarding the medicines and treatments you are going through.

      (and thank you, dear Aviram. Your support is very special to me!)

  2. Sometimes "gotta keep walking" are the most inspiring words...

  3. First of all - I love to hear about the progress with the writing. You go, girl!

    Second, I REALLY hope that the docs can do something - and quickly about all the pain. Nobody should have to endure even a fraction of what you already have and continue to do.

    Thoughts and prayers are (as always) coming your way from this anonymity...

  4. wishing you a shavua tov and I hope a pain free week. It is soooo hard to be in pain and take care of the kids. may you have a complete refua.