Friday, February 3, 2012

a central theme, not-so-eloquently put into words

I got this letter from a good friend who has been following everything since the beginning. These are some of the people who traveled a long distance to come visit me in the hospital when I had NF. These people were actually at our wedding, as well.
She wrote me yesterday as a comment to my blog, and I printed it in the "comments" section of the blog, with my response. But, I decided it is a good theme to print as an entire update, since I am too tired to write about how things are going (hard, painful, crying, hate surgeries, can't take it anymore, you know, standard stuff like that...).

Here is her letter, and my response:

I'm in total awe or shock that this was a problem that could actually be fixed but that it took so long to find this out and all the pain you had to endure in the meantime. and for how long?? It is just mind boggling. Let's hope this is the beginning of a full or as close as you can get to it recovery!

Love to you and all the family,

Yes, H, I know. This problem is been getting worse over the years since my PVNS surgery. The same surgeon did the PVNS surgery and didn't see any impingement problem at that time. I think it started afterward when I so vigorously did all the hydrotherapy, albeit with pain. Nobody ever told me to stop; quite the opposite-- that it is good for me, even though it hurts. The entire two and a half years I have been doing intense hydrotherapy hoping for an improvement in the situation. One hundred times each exercise, pushing myself to the limit. Swimming many, many laps, freestyle, *after* I finished hydrotherapy. If it was just slightly impinged before, I very well may have been making it such a bad case all by myself. I had no guidance, only doctors who told me it's great that I am doing all that in the pool.

My main message is:
"Listen to me when I say something's wrong!!
Take me seriously when I take lots of serious, narcotic pain meds just to get out of bed!
I *know* my body." It has happened time and time again that I wasn't taken seriously,
and I was written off.
after I had hernia surgery, this was said three days before I had total system failure and almost died: "we see no reason for her to be in pain."
one nurse even said "she is just spoiled needing all that pain medicine"
Cellulitis infection: from my [then] GP: "take acamol for the fever, and go to the gyn if you have pain there. No worries".
before the PVNS diagnosis: "it is just residual pain from all you've been through. That little thing on your synovium is nothing. You are fine."
(ps- I *felt* 'that little thing' on my synovium. I felt the tumor in my joint.)
Before this most recent diagnosis (femoralacetabular impingement): "your joint has been through a lot. This is how we can help, with these pain meds,
not much more to say about it."

"We don't always understand pain"... 
well guys, trust the people who have it and find out why
That's what *I* have to say.

By the way... I have already been told by my GP that Trudy (here) is nothing.
It is hurting lots, especially with the crutches I am now on.
Again, I feel a big protrusion in my shoulder. I know it is NOT nothing.
Another fight around the corner...

thank you to Y & H Mb. I love you guys, and your undying support is a warm stream flowing inside me. Sarah


  1. You are absolutely right. You know yourself and your body better than anyone else does. I think it's terrible that you had all those negative comments thrown at you. Sometimes it's hard to "stand up" to a doctor or nurse and tell them that they are wrong, at least as it pertains to you and your body. Hang in there; take meds when you need them. You will feel better.

  2. Too bad none of your docs read your blog.

  3. WOW!
    שבת שלום
    and have only good dreams!
    Shanni Reiff Profesorsky

  4. i appreciate your humor in the face of all of this &*^&. I only today "got" the name "Trudy". am i allowed to laugh out loud? love and kisses to all your boo boos.

  5. Sarah, it sounds like I'm not the only one who wondered why it took so long to figure things out. Interesting how people have similar responses.

  6. Dear, dear Sarah,

    It’s amazing for me to read this tonight.

    I’ve actually been having hip pain for a few months. It’s been diagnosed as being caused by arthritis in my sacroiliac joint. I’ve been going to P/t which hasn’t helped, have modified my diet, which hasn’t helped, and have continued my 40 minute walk with Cooky (our dog) every morning which I’ve been encouraged to do. Before reading your message I decided to start listening to my body and take a break for a few mornings. (We have a young neighbor who normally walks her on Shabbos and Sunday mornings.) I called him and asked him to walk her for me through Tuesday (at least) to see if resting the joint quiets things down. We’ll see what happens.

    I’m listening to my body.

    “Trusting my instincts” seems to be a very frequent message for me.

    Thank you.

    Lots of love,