Wednesday, August 31, 2011

I want to quit going to doctors. I want to pretend everything is fine.

I feel really positive about the decision to go off the methadone. I think it would've taken a tremendous amount to take care of my leg pain, and the side effects of the [relatively low] dose I was on already were unpleasant for me. I am looking forward to the side effects ending.
But doesn't every drug have side effects? I guess the question is whether one is willing to live with them or not. In the case of the meth, I really am not willing to live with a few of the side effects.

I wish I didn't have pain.

What to do next is the question. I have no idea. I await the recommendation from Dr. Z.
I honestly feel resigned to not ever finding a medicine that will help with the deep bone/joint pain I have from the PVNS. It has been with me steadily for three years. Even Prof. Meller said that in all his experience, nobody has found an effective drug for PVNS pain.

Why me?
(Have I ever written that before?)

Another issue I await the recommendation of Dr.Z is the migraines. He had said that he hoped the methadone would also help with them, but we didn't get far enough with the meth to find that out. I was at the nephrologist today at Soroka, and the issue of the migraines hit hard when Dr. T (kidney specialist) came down on *me* hard that I was still taking the Advil, which is an NSAID; 'poison' for kidneys.

My kidneys definitely have "CKD"-- Chronic Kidney Disease. I have very small kidneys, and that hinders effectiveness. They are small presumably from all the tremendous amounts of NSAIDS and surgeries I've had in the past 4 years. I learned that these things can make kidneys shrink, although some people are born with small kidneys. But mine are abnormally small: 8.5cm, when normal for a woman my height should be 11 or 12 cm. That effects function; less stuff goes through the filters. I have also the nephrocalcilosis which inhibits function even more.

When he told me it is forbidden to take Advil, and I told him I have no other choices with the migraines, he put his hand strongly onto his desk and said "You Mustn't Take Advil. You will wind up on dialysis. Do you understand what this means?" in a voice that says that daddy is really mad at you.

then I cried.

I am allergic to many medicines. Some others simply don't work for me. I am with one of the best pain doctors in the country, and I am waiting to see if he has another suggestion. Meanwhile, I am getting migraines, and I am taking Advil in large quantities when that happens-- it's the only thing that helps me have relief. The Advil turns my migraines into smaller headaches. Then I have a chance to sleep.

what am I supposed to do?

Dr. T (kidney guy) *called* Dr. Z, pain doctor, right there in front of me. Apparently they are friendly colleagues. He wanted it clear that answers need to be found for this problem. He told Dr. Z that Advil is FORBIDDEN. OK, we get it.

I'm feeling sorry for myself.

 I am going to search down a neurologist. Maybe one of those types of doctors can help find a medication for the migraines. I don't have one of those in my list yet. It's about time. My list of doctors was getting lonely.

Lets cut now to the next part of my day: the dermatologist.

The rash/infection on gapey is ok. The cream I just started using is the right one, and it should go away soon. I told her I get quite a few rashes on gapey, and I asked her why. She said that the immune system on that area is fragile, and if there are any imbalances, it reacts. ...OK, I guess.
I made an appointment also to get a few barnacles removed. No moles, just a few nuisance bumpy things.

All-n-all, that appointment went much better.

then Robert & I went out to dinner.

 Tomorrow is a new day.


  1. Sorry to hear you are still in such pain. Hang in there! Bev Tamar

  2. I hope you find someone who can help you eliminate (or at least moderate) the pain without damaging another part of your body. Keep focusing on finding solutions.


  3. At least it's encouraging that your doctor cares so much for your health!

    Since you need your sleep, you may have little choice for now, but perhaps there are other stop-gap measures besides Advil that would go easy on your kidneys even if they make demands on other organs, that can then buy you more time to look for a long-term solution toward minimizing migraines and getting adequate sleep.


  4. wow. I just read your news and thoughts and feelings, and I am sitting here staring at the keyboard, not sure what to say or write. may this chodesh elul be a time where you can start feeling stronger and healthier. you are on my tehillim list that I say daily. may the doctors you go to be the right shaliach and the doctor of all doctors should send you a speedy refua shlaima.

    maybe now that the kids are going back to school and quiet has come back to our homes, how about working on a book where you put together all the pics you took (I hope alot) in the states, and writting under each picture a short summary etc, of what you and your family did when you were there. you can look at it when you are feeling down and I'm sure it'll give you a pick me up feeling, just looking at the fun time you all had. you might have pics. on the computer, but its always nice to have something you can hold in your hand . hope this idea helps a little. rochel.

  5. Sarah I hope you feel better soon.
    Love Joop and Onnie

  6. Thank you, everyone. I have taken a few days off from thinking about or doing anything about any of this. I need some space; it is the only way I can deal. But, things are going to be OK.
    Things are going to be OK. Mantra.......