Tuesday, June 9, 2009

Vent, mixed in with a little despair

It feels so hopeless.

The Percocet doesn't help the pain much any more; maybe about 40% or so. It gives me dizzy spells, slight nausea steadily, and often leaves me with a headache, so the net gain isn't worth the side effects any more. There is no other pain relief stronger than that which will allow me to stay in the awake life buzz of my family.

I Hurt. My hip is *killing me*. I am also afraid of being 'landlocked', or stuck without a way to transport myself and my children hither thither and yon because driving the car is almost an impossibility for me. I'll bet you aren't aware of how much your hip is involved in using the clutch, or how much you actually clutch in one afternoon of errands with two children in the car. [we did manage to get those two kids new sneakers, and Dov his new glasses, and get to the post office]. Believe me, it is way too much shifting. The city streets with the stop lights every minute, the parking with the forward-reverse thing a few times, I can't do it anymore. I *do* do it, I just don't want to ask a friend to take my kids out for shoes. I *want* to do that with them. It is mothering, it is love. And yes, we had to do it today- Dov had nothing but his crocs to wear and he has a tiyul (hiking trip) with school tomorrow. This week Robert has another day added on to his schedule in Mitzpe Ramon, so him going out for sneakers with the kids isn't an option. (BTW- carpool angel- is tomorrow a possibility for the pick-up? Robert is away.)

To top it all off, I went to the office of the orthopedist today to schedule an appointment; the one Bikels is sending me to for an opinion of how to do the surgery. Got a small-minded secretary that insisted that there are no appointments for me or anyone else before the end of July. I showed her the letter from Bikels, and asked to speak with the doctor. He is out until next Tuesday (a *week*). I then tried to call Bikels and left a message which hasn't been returned today. This disease is progressing- I feel it- I know how it was a few weeks ago, and now it's worse. I wake up a few times every night in pain and have to gasp and creak myself into a new position. The Percocet isn't working very much any more. I can barely drive without wincing in pain just to make the car move. I need this surgery to get a move on- how much cartlidge is getting destroyed while I wait for everyone to get me appointments? I need to talk to Bikels and I want to point him to the Toronto studies. I have to do that carefully- don't want to bruise an ego, getting references for research from his patients. I think, based on all the research I have done, that we should go with the open surgery. It has the best rate of success in getting all the tumor and synovial ducts around it OUT. Also, I have a lot of adhesions and scar tissue all around that hip from NF, and I feel that arthroscopic surgery may fail and wind up to be open surgery half-way through the procedure. That makes the surgery last many hours more rather than planning for open surgery at the outset. I don't want any surprises, thank you. Tried that already.

How am I going to get through this all?! Waiting for relief, not knowing if or when it may come.

Well, at least I have a great mattress to sleep on!! (that's the best I can to tonight as far as trying to end on a good note).


  1. Any chance you could exchange your car for one with an automatic gearshift?
    I'm sorry to hear you are in such pain. You must feel like you're being pursued. At least friends are running with you.
    Take care,

  2. When my dh was sick years ago someone told me that a good doctor should not mind you getting a second opinion. Tell him that this is such a big issue for you that you just want to check every last detail to make sure you get the very best outcome as you just can't stand it any more. It's a mental health thing as well as a physical thing.

    So sorry to hear that the pain meds are no longer working well. Your body does acclimate to these pain meds and over time it takes more and more to help with the same amount of pain. That is not to say it isn't getting worse either but it's not a given.

    Good luck getting what you need from your docs.