Saturday, November 29, 2014

The scary but sure tunnel of change

"You're not exactly a candidate for an award for the "best surgical outcome". There is no way, no matter what you say, that I am ever going to operate on you again. We are talking about putting your life at risk, and I am not going to have any part of it."

"After the last time we saw each other- in which you were red and swollen [at the surgery attempt when I became allergic on the table]- I thought about it and decided that I will not operate on you."

My orthopedist of almost 6 years could have told me this before, that he had already decided there will be no surgical fix for my right thigh joint, at least not by him... before I trekked up to Tel Aviv on a rainy day last week.

Before he said his piece, I had started the meeting by telling him that I am not sure about doing the surgery, that I wanted to discuss it with him. I told him about what has happened recently regarding pain, and the new ligament "twang" that is happening and making me crazy (to which he told me to "go get physical therapy").

Then he told me I have a very low pain tolerance; that people walk around for years with a torn labrum and impingement in their thigh joint and are not on narcotics. "With the medicines you take, I am not going near you with general anesthesia." It was an insult... that I am on narcotic pain meds at all, and that what I walk around with shouldn't hurt.

Low pain tolerance?

(%#*)_+*&^%#@ EXPLETIVES & INSULTS aimed at doctor *&^%#&(#+$@I*^#%!.

I am at such a loss for real words for anyone who can sit with me in a room and say to my face I have a low pain tolerance. (never mind that it is a man, who hasn't experienced natural childbirth- not once, nor the three times I have... and a c-section while having three other little ones to take care of). I know childbirth has a different sort of pain scale, but still, just wanted to throw that in.

*YOU*, Dr. orthopedist, walk around just for one day with exactly what I feel and then say that.

Seven years ago, when I returned to the hospital four days after the surgery which eventually led to NF, a nurse said to Robert that the fact that I was in so much pain, four days after the surgery, was because I was spoiled and have a low pain tolerance. Nobody else would need morphine for this. The next day, the raging infection which was causing the unbearable pain almost killed me.

I am not saying now, Gd forbid, that I am presently in mortal danger. I am saying that those words should be TAKEN OUT of the lexicon for doctors and nurses. It is such a slap in the face, you can't imagine.

I reminded the orthopedist that I went on the narcotics before my right hip was impinged. That "there are other reasons, if you will remember, for me to be dealing now with chronic pain." I then told him that I am presently in a long-term plan to lower the Fentanyl, and that is one of the reasons I have more pain recently. He wasn't even listening at that point. Just typing with a look on his face that says "I have cut you off, I'm typing this letter up for you for the last time".

Oh, he also told me that he was sorry that he operated on my left hip for the impingement. I said, "but you know it helped, right?" The fact that it is torn and impinged again isn't his fault, it's nobodies. Sh*t happens. At the time, it was clear to me that he was trying to help. Now he is sorry he did. Thanks, buddy.

My orthopedist dumped me. (sounds funny when I re-read this while proofreading it.) 
No mistakes about it. Clear as day.

The doctor said that I am free to find another orthopedist if I want, but he is out of the picture.

Basically afterward I felt like a lost cause, screwed up, and insulted.

Thursday (two days ago) I took off another dose of the Fentanyl. I am marching through this plan, trying to stay strong in the storm. I now have 68mmg of patches on me, and the high point a few months ago was 87.5mmg. Making progress, but living with more pain. It'll get worse this week before it tops off the next week. I am taking off about 6mmg every two weeks, like Dr. Davidson suggested. I am awaiting the approval for the new medicine, which should come in around the time I have gotten the Fentanyl down enough, hopefully. Dr. D said it should be, at the highest, 40mmg, but 25mmg is optimal. Then I'll start on the new medicine and slowly wean off that last bit of the Fentanyl in tandem.

I wonder how life is going to be when the Fentanyl gets that low. Each time I cut down a dose, I am scared, proud, strong, fragile, unsure of my decisions, and trooping through to the next phase, wherever that will be. I am also in sort of a gray zone about the new medicine- if it'll help, what will the side effects be, how will it change my life? The Fentanyl certainly changed my life, now I am looking toward another pain-relief medicine with all it's question marks and uncertainties.

At some point, when I am ready, we'll discuss the new pain medicine plan. I'm not ready yet. I think I want to know that I am actually going to keep following through with lowering the Fentanyl, uncovering more pain, walking through the scary tunnel of change. Part of me wonders if it is just going to get too painful for me to continue following through. Actually, Dr. D said to me that if that happens, to call him and he will prescribe something in the interim to keep things more in control.

Life has been hard. Very hard. But there are good things, too, Very good things. I just don't write about them much because I really use this blog to get out the hard stuff. I'm sorry that you bear the brunt of that, but it's better than living with this stuff inside me, and having no outlet for the emotions that arise as fallout from being through what I have. That, together with knowing that without the blog, my friends wouldn't know what is going on with me, and I am not the type to explain it. I keep it inside usually. My usual response to "how are you", if I know the person is reading my blog, is "perfect!". I'm such a card.

As a side note, I find myself somehow feeling closer to picking up my horn again and starting to play a bit. My former partner from the orchestra- the other horn player- calls me occasionally to feel out where I am with playing. There is tons of orchestra work waiting for me when I am ready. This last time he called, two weeks ago, he dropped some composers and names of pieces that he would need extra players for, and that I would love to sink my teeth into.

But then I say, who am I kidding? I can't commit to watering my plants on time, how can I commit to a real job with expectations? Sitting for rehearsals and concerts for so long at a time, having pain while I am supposed to be concentrating on musicianship and what it takes to play in an orchestra. Never mind needing to practice for a few months just to be at a decent level again. Nah, that's just not in my cards. Isn't that just... sad?

But maybe I'll pick it up again anyway. I'll let you know.


  1. if you get to play your horn let me know...playing in an orchestra is a daunting commitment...I think about it all the time but then become realistic! Still we could play duets or I could get a 4tet rehearsal could find a quintet or something much more flexible. Your blog sounds like when I was dropped by the specialist at Myun Nashim at Kaplan with my problem at peak craziness when he said I have tried all the usual treatments and have an allergic reaction noone has ever seen and so he can't do anything more for me. I eventually did acupuncture and sorry to say got worse before i got better-I was allergic to all the natural remedies the acupnucturist suggested too...but I did find my way and am mostly much better. Good luck perhaps you do need some kind of exercise plan on top of meds..Pilates...meditation...

  2. Ouch. I hope this means you can find a better solution to your pain. How deflating is it when we agonize over a decision and then have it taken out of our hands. Sorry again that you go through these struggles.

  3. Our thoughts and prayers are with you always, and we look forward to seeing you through to the next stage, and every stage after that as you fight your way to health!

  4. I had to reply to your blog this time. What your doctor said to you was so, so outrageous, there really are no words. Or I could write a book in reply. But what I'll say is - he's the one who's overreacting to your situation. Clearly, the allergic reaction you had really freaked him out. And kol hakavod to you for brushing off what he said and then changing the subject! Kol hakavod for not taking it personally! His reaction speaks volumes about him.

    You know yourself, where you're at and what your needs are.

    Good luck and yasher koach with all you're doing, lowering your pain meds.
    Good night,

  5. Oy. What shmendriks. Hang on and keep following this path you're on.
    Love, Miriam

  6. You will get through this tunnel. You will.

  7. What powerful writing! Remember, you may never have found that "voice" without all this. You are becoming stronger in different ways. Amazing!

    1. True, true. I still don't know if or when I will pick up the horn again, it is so emotionally charged for me. But, I know that I want to, and am closer.

  8. The more I read your journey the more I want to meet you!

    1. I would like that, too! Where do you live?