Tuesday, July 19, 2011

Outraged at pain

I have been known to say:
"I wouldn't change one day of what has happened to me over these past four years since NF."
I hereby retract that statement.
It was my way of saying that everything is exactly the way it is supposed to be.
That all the really bad stuff that happens is for a higher purpose.

Well, you know what? Sometimes things happen that were *not* ordained by Gd Himself.
Today I learned from a good friend that the Rambam (13th century commentator on the Torah) said that not everything is predetermined.
Certain things happen because of chance.
(thank you, K.)

I am bitter that I had NF.
It put me in a state of near constant pain, years afterward.
Probably for the rest of my life.
The *rest of my life*.
Pain. In many different areas.

I was in a fog the whole time during visiting day at Dov's camp (but I think only I knew it. I hide things well). The day itself was beautiful, and my son is doing great... with his tan, his tie-dyed shirt, his non-stop talking about camp stuff. His smile. Thank Gd for his smile. It's just like his Dad's. :-)

My fog didn't lift. I slept whenever I could (in the car). We got to Modi'in for Shabbat, and I slept. And slept, and slept, and slept. I missed out on quality time with my in-law extended family because I slept through it.
Sunday I had to get up for an appointment with my doctor (follow-up on the sprained foot). I tried my best to fight this thing and stay awake for the rest of the day. I wound up with a raging migraine.

Often it's the kind of sleep that is laced with very vivid, strange, often violent and unpleasant dreams. They are like dreams in a twilight sleep-- like you know it's happening, but it is impossible to wake yourself up. It feels sort of like an anesthesia, I wake in the exact position I went to sleep in many hours before. When I do wake up, my limbs are heavy; I'm in such a fog, I only want to fall back to sleep. 
That is how I sleep so long.

Dr. Z (pain Dr) said "it's the methadone". All of it-- the long sleeps, the fog, the crazy dreams-- all from the methadone.
Sad part is that the meth isn't yet helping the pain.

We are going to stop raising the meth in the increments we have been. He wants a week of "leveling out" as he said (continue taking the same dose without raising it this week). My body has to catch up with it. After the week, I'll see him Sunday (I see him every Sunday), and hopefully report some more waking time without the fog.
He still believes that the methadone can effectively help with the pain. We have to get up to a higher dose, but --s l o w l y.--.

Dr Z. has a long-term plan of eventually lowering my other medicines, then cutting them out completely, leaving the methadone to cover the pain.

I am OUTRAGED that my life turned on a dime;
that plans for another baby turned into an insane MESS.
I am on METHADONE, for crying out loud.
My EVERY DAY revolves around the WORTHLESS PAIN and trying to get rid of it.

So, the "I wouldn't change a day of it"?
It's a crock.


  1. At least you're being honest with yourself...


  2. I wish there was something that I could do or say to make it better. There isn’t. All I can do is listen…Anytime…


  3. I have a good friend whose third child was diagnosed with severe autism. He doesn't speak yet at age 4, and he is very low functioning. She is raging with anger at the medical institution which may have encouraged too many vaccines in a short time, perhaps causing the autism. She is angry and sad and feels her child and her life as she envisioned it was kidnapped and stolen from her. As she puts it, she is in mourning, and is in tears most times that I see her, or has separated herself from others because she can''t relate to their "normal" conversations, where everyone has health or well functioning children. Why do I bring this up? Mourning is painful and takes a long time, and evokes many emotions. You too are mourning the "you" you wanted for yourself. Very painful and infuriating, and like my other friend, you live with it every day.
    Wishing you comfort, Sarah. And I'll be angry with you, and supportive in your good times and bad.
    XXX. Dev

  4. It must be so tough to go thru what you are feeling. thank you for sharing and letting us be apart of your life. wishing you refua shlaima bkarov! sending you hugs and warmth, rochel.

  5. Thanks, everyone. Today the anger is less. I think it helps diffuse it when I write about it and then other people *know*.

    And yes, Dev, you are right-- mourning can take a very long time. Your friend and I have a similar time frame, right? Approx 4 years? Interesting.
    BH a bazillion times that my children are healthy. To me, that would be worse than what I am going through.
    But she shouldn't assume that everyone in those crowds she is separating herself from are "normal". *I* could easily be in a crowd and she'd think I was "normal", ie without 'real' problems.
    Hashem yirachem.
    So, thanks everyone for responding so lovingly.