Wednesday, August 3, 2011

My son's name is Azriel. It means 'Hashem helped me'.

As summers go, this one is a great one for us. The children are happy, the parents are happy, the dog, hamster & fish are happy. (we'd all be *happier yet* if our air conditioning was fixed...)
Mommy is going swimming, and it is great for me!!!!

Next week on the 11th we take to the skies for the grand 'ol U.S of A. Everyone is *so* excited. Days are being counted, suitcases are being argued over ("I get the red one!" then, "You had it last time, now it's my turn!"), parents are trying to check things off lists. Everything in order!
We are planning many fun-filled days over there in America. We'll see my brother and his family for a few days in Indianapolis (we haven't seen them in ages). Then in NY we'll spend time with my parents, Robert's great Aunt, Robert's brother, my other brother, friends, and Target. We really hope to shop this time-- the past two times we've had no time at all to shop! The kids all need new shoes, too.

OK, it is good to always start with the things that are good. And truly, most things are really, really good, thank Gd.

First thing is that the hypnosis isn't good for me... I can't do it. It's just not suited to me.

And, if I'm almost going to talk about medicines, I want to hereby officially declare that one medicine and problem has been totally erased from my program-- the sleeping pill as well as the melatonin supplements. It feels so good to fall asleep without that stuff.

But, as we know, the fact that I can sleep well is bittersweet because it's really the Meth that makes me so sleepy. It is better than it used to be; seems my body has gotten more used to it. Although what happens when the body gets more used to it? We raise the dosage. We still are aiming to get to pain control dosage. Yesterday (Monday) Dr. Z, the pain doctor, raised it significantly. I'm sure my body will get used to it within a week.

I have been recognizing a dear price I am paying. That price is my memory for words during conversations. It's not only an issue of Hebrew/English. It happens in both languages, and it is very intense. I am constantly forgetting words while trying to have normal conversations. I 'uhhh' and 'um-a' and 'emmm' when it happens. 90% of the time I remember the word in a few seconds, but those seconds are very long for me. I have the association in my brain, and the word just does not come. It makes conversations have a different feeling. Things don't flow. It is a hard hit.
Today, I am sad to say, I forgot my son's name.
He didn't realize it; it was a situation that having another child say it was completely natural.
But I knew it. And I was shocked.

It is from the Meth. It is somehow hitting my language memory center of the brain.
And this is still considered a low dose.
I pray that it stays the way it is and doesn't deteriorate any more than this.

Would those gapey repair surgeries and the hip replacement get me off the pain meds?
There is a chance that they could leave me even more handicapped.

What can I expect long-term from the meds?
Nobody knows.

Let's wait on big decisions. I am committed to this program with Dr. Z. I trust him. He understands all the issues at hand. He listens to me well, and knows where things stand.
I will have a meeting with Prof Meller when I get back, and we'll see if he has any treatment suggestions. Worst case scenario? That he'll have no treatment to offer; that he'll tell me I can't have a hip replacement because of the NF damage, or because I'm too young. I've actually decided that if I could have a pain-free 12-15 years and then have to redo the hip replacement because it has worn out, I would rather do that than have those years with constant pain.

Let's wait on big decisions. The answers will come when they are ready to come.
I have patience to wait and let Hashem drive.


  1. Don't be too hard on yourself. You didn't forget him or his name in your heart -- it's your tongue that can't form it.
    Hugs, Jackie

  2. חזק ואמץ as always, so sorry the hypnosis didn't work. Hugs, Leiah

  3. side effects are hard to deal with. you should have strenghth and courage for all you are dealing with. and hope you have a gr8 trip to the states. rochel.