Monday, May 27, 2013

medical update

I'm a mess. I mean, more of a mess than my usual mess. Such a mess that I am getting so depressed about it, which I know  is a very slippery slope.

I got the result back from the MRA from a few weeks ago, finally. The test was for my right thigh joint, the one which hasn't been operated on at all. I feel pain in there, and the test was to see if there is PVNS in it, or to what degree does it have the impingement like the left one, called FAI. I was pretty sure it had impingement (familiar feeling as left), but to what degree?

Well, yeah, the right thigh has impingement. That means that the head of the femur comes out slightly from the "cup" where it sits, held together by the "labrum". There is a tear in the labrum, and the head of the femur protrudes.

Quite some time ago, the right hip was giving me so much pain, that I raised the dose of my Fentanyl patches to the next higher dose. Since then, I have been having a real honeymoon. The pain in both thighs was covered, and it was awesome.

Even when I got the news of the FAI in the right thigh the other day, I was pretty sure I wouldn't opt for operating on it soon, as long as the medicine is enough. I know though, that that may be faulty thinking, because the actual issue that is being covered by the medicine could get worse, in the time being.

So, with that issue unresolved, but not causing me immediate pain, I put it aside. I'll see my orthopedist in a few weeks to discuss it.

The story doesn't end there, however.
Quite suddenly, since last week when Robert & I came back from our three days away up north, my *left* leg has been hurting. Yes, the one which has been fixed multiple times. It had been doing well (with the Fentanyl).
When was the last time you heard me complaining of my hip pain? Long time ago.

For the past few days, it has been hurting like crazy. Almost as bad as it used to, believe it or not. It is the exact same feeling. What happened??! I didn't change any medicine regimen, add any exercise routine, nothing changed, except for traveling a bit. Could that have done it? I've traveled like that before without paying a painful price. Yes, of course, a price of being exhausted, but not increased pain. Not in a long time.

Here we are supposed to be making a decision about the right hip, and the left one is regressing. I am *really really* upset about this. Did something physiologically happen?

My hand doesn't seem to be getting better, either. I can't STAND wearing this splint and having my thumb immobilized. I have, however, figured out a way to type with it on which doesn't hurt. Leave it to Sarah to figure that out. :) I am just so  depressed that I don't have full use of both hands. It's been many months now, dealing with the falling on it, then all the rashes, trying other splints, more rashes... etc. Everything is a story.


What is my body doing? Why are my limbs so effected? Not to mention the constancy of issues with the skin graft & muscle which bother me on a daily basis.

I am going nuts with the isolation of having these problems. I can talk with people about it, explain it, but it still feels like I am so isolated. Here are some messages that I get in my head- they are all feelings, not 'truths'. I know that, but don't use any particular tools to fight them:
Nobody else on the planet understands me.
Nobody on the planet wants to hear about it.
I am a burden. Well, that feeling was *really* powerful* this past Shabbat when we were in Modi'in for my nephew's BarMitzvah (which was really wonderful in every other way!!). We needed a wheelchair because of the distance between the apartment where we were staying, and the synagogue where the BarMitzvah service was. My brother-in-law rented one for me. It was a very hot Shabbat. Robert pushed the two kilometers (mostly uphill) in the hot sun to get us there. Dov pushed back to the apartment afterwards. Each of them were exhausted, hot, and didn't want to have to go anywhere else if I couldn't walk there. I felt so awful for just saying to Robert that I wanted to go back to the apartment to rest, because there was nowhere else closer that would work out. What word pops up in my head like a neon sign all day? BURDEN. I *hate* when any part of my independence is challenged, and having to rely on anyone for anything. I just now had the realization that I need to avoid wheelchair situations. They make me feel awful.

Does my body have secrets that I am not paying attention to, so they have to act out on my joints?

I haven't gotten to the article I need to write yet. I have been, however, taking an on-line writer's course, which I am really loving. Lots of nuts-and-bolts of how to write the book that is aching to be written. There is a lot about publishing; mainstream vs self-publishing, how to write a proposal to a publisher, and so much more about the trade. I am a total rookie here, so it is all invaluable information for me (for free, too!). The classes are up on the net for 24 hours, and there are two a day, so I have been busy racing the clock to get it all in and take notes before it becomes unavailable. I can get an mp3 of it if I want, but I am trying to keep this free.

Mainly I have learned that I am not clear on the first, most important question:

Who is the book for? There is also: what is the book about? What are my readers struggling with, that my book will help them with?

Not easy questions. If you want to offer answers, I'm open!
There are many books out there about the transforming nature of illness, coupled with Gd and spirituality... I assume, that is. I have to research the market for this material, and figure out why my book is needed in the world, and why is it different from anything else out there.

I do have this publisher- Jerusalem Publications- who offered me a book deal a few years ago. They are still there, willing to accept my material when I am ready to hand it to them. There are pro's and cons to their contract, though. I am not sure if I want to propose my book to the larger, more diverse world, or keep it for the Jewish market, as would be with the case of signing on with that publishing house.

I am so far from that stage, though. I first really have to answer those questions above. I am stuck until I do.

I wonder what questions my body needs me to answer in order to make me unstuck. Will they go hand-in-hand; my body healing and me getting off pain meds, together with "birthing" my book? Isn't that an interesting thought!


  1. Sarah-
    We can't truly understand what you are experiencing, but we DO want to hear about it,
    and you are NEVER a burden to anybody. Everyone who knows you is thankful that you are still here in our lives, affecting us in the special ways that only you do!
    Love us
    Ken and Jodie

  2. I couldn't have said it any better than Ken and Jodie.

    JUST FYI: There are motorized scooters with a Shabbat mode and I presume it's possible to rent one (I can try to find out where).

    But I pray that in time you'll feel so much better, you won't need one.

    Love Michele

  3. Isn't this always the case? The more you know, the more questions there are? Trying to fix the most critical issue(s) and putting off the less critical. I don't have answers except to say perhaps gapey needs to be fixed to get you more in balance. Could you be hurting the hips by the way you walk? I also want to say I read it all and want to read it all. I can't understand but I care. And i believe you will find what you need to say in your book. Hugs to you!

    1. thanks, Jackie! I really appreciate the feedback. Always. Interesting that you said that gapey may be a priority. I don't see it that way. The way I see it, I have to get my hips dealt with properly. Gapey has been with me for so long, has withstood the test of time, and yes it bothers me, but less than the other issues. I would love to hae it fixed, though.

  4. This is a link to one!

    1. YES!! wow it could really really change your life.

    2. Wow, it is perfect for me. Putting it in/on the car would be complicated wehn we go to other places to spend Shabbat, but we could figure that out. Maybe one of those bike racks. I don't see how much it costs, is it on the website?

  5. My brother in law has one and he uses it all around Manhattan. His separates into two pieces and when he came to Israel for my wedding he brought it along. Happy to ask for specific info if you're considering it seriously.

    1. Thanks, Michal. I would love to have one, it would open up all sorts of options on Shabbat for us. We often have to turn down invitations, or reverse them so the people will come to us instead, because of the walk being too long. OTOH, money isn't flowing like water these days. I'm sure it would be very expensive.