Tuesday, June 2, 2015

I. am. narcotic-free.

It started here. September 21st, 2011. Go read it, it's worth the read.

It ended today.
I took off the last half of that little piece of "clear tape" this morning. Fentanyl and me, we are

D O N E .


I am still having withdrawal. It is unknown how long that will last. I am fuzzy-headed, tired and sleep-deprived because of insomnia all the time. I have to get off the sleeping pills, too. That is my next goal to conquer. I know now that I can do it.

I saw my healer on Sunday (Miriam Maslin), and we worked a lot together to come up with plans and resources to help me regain [more of] my health and strength. I also have a working plan to get off sleeping meds. Oddly enough, I have a gut feeling that I will start sleeping normally when I do. Eight years of sleeping pills is a long time. Enough. Once I get the sleeping back on track, life will be so much easier! It is ****so**** hard to live with insomnia. Life is always out-of-whack, 24/7. I can't even nap anymore. I can lay down, exhausted, but deep sleep does not come.

I will work my way out of this.

I got off of 100mmg of Fentanyl in... what... 7? 8 months? I can do *anything*.
My body will be less toxic. (It already is!) My digestive tract is slowly coming back "on-line" after being assaulted with narcotic pain relief for five years. Slowly. But surely.

And the pain?
yeah, it's there. Sometimes lots of it is there.

We borrowed a wheelchair to get to a BarMitzvah on Shabbat, and I was in pain the whole time. (I danced at my cousin's wedding on Thursday, and my entire pelvis was totally seized up and in pain Friday... could have something to do with that).

The newest question is whether or not I should fix my right thigh or not. Not fixing it means I will live with the pain, as I am now, and as it gets worse I will re-evaluate. Many people have told me, however, to not let these things get worse... it makes the surgery more complicated. My physical therapist said to me yesterday that if it hasn't gotten better in the three years since it was diagnosed, and indeed has gotten worse, there isn't much of a chance for it to get better on it's own, no matter how well I take care of myself and it.

I have an MRI scheduled for the end of June. I plan to wait to see those results and then decide. First we have to know if I have PVNS in either joint. We already know (from numerous MRI's) that there is a tear in the Labrum of my right thigh. That isn't an emergency. PVNS is. So, much like a cancer (but NOT cancer), each scan holds tension and question marks until results are obtained. PVNS is a rare tumor disease in which the tumor(s) grow on the synovial duct- the ducts which bring the synovial fluid (likened to the oil for the joint) around the joint. The disease itself can, Gd forbid, cause one to loose a leg. In that way it is like a cancer in it's destructiveness, but it does not grow outside of the joint, so it is not deadly. (Actually in one case we saw on the internet, PVNS *did* grow outside the joint, but it was an isolated case).

I had that in my left thigh joint in 2008. The surgery to get rid of it is called a "synovectomy", which was successfully done in that year. Then the next year (or two years later? I don't feel like going through the blog at the moment to look for it...) I had another surgery on the same left thigh to fix the tear in the labrum, like I have now in the right thigh. Is this confusing? Yeah, I know it is.

So, the left thigh, with it's NF "hole" (Gapey), skin grafts, massive scar tissue, mesh holding in my innards, and two orthopedic surgeries afterward is often where I have pain. Obviously. Now, without the Fentanyl, I feel it much more sensitively and more often. OK, I can cope... usually (not always, as we saw this weekend after I danced at the wedding). The right thigh only has a tear in the labrum and impingement (the condition is known as FAI). That has it's own steady pain, but different than the left. Fun, right?

All I know for sure is that me and narcotic pain relief are FINISHED.

Whatever the future holds will be guided by Hashem, as it always is. And I thank Him for giving me the strength do this monumental task of getting off the Fentanyl.

I can hardly believe it myself. I'm done with Fentanyl. THANK G-D.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Post-script: I wrote that in the morning... now it is evening, and it's been an awful, awful day. Such strong withdrawal, I feel like I went off a huge dose, cold turkey. My body is in shock. I have brain-zaps, shaking, tremendous weakness and shortness of breath. I am functioning, though. I have been making healthy food for the kids, holding conversations, and driving to activities. No choice, right?
I pray that this will pass soon and I can enjoy my accomplishment. One thing I did enjoy this morning, before things got hard, was this: taking a shower without having to worry about my sponge rubbing off the patch on my upper arm. I have wanted that for a long time. It was a small, yet triumphant feeling.
I am nervous about how the night will go. At this exact moment, my left leg is vibrating and shaking from the RLS. Send up a prayer, if you have one to spare. And thank you, as ever.
Sarah Rachel Bat Tova


  1. YAY Sarah, you have accomplished a MAJOR goal. I'm rooting for you 24/7, including holidays!

    1. Funny- including holidays. :)
      Thanks for the support!

  2. So very proud of you!

  3. You don't have to send me the email. I'm here! And I am so proud of you! Hashem is here for you always.

    1. You are so right about that!
      Life is feeling so hard today, though. I know it will pass.
      I did write you that email... other stuff.

  4. wow what an accomplishment, Good luck on the next steps. Hope withdrawal symptoms pass quickly.

  5. so happy to hear! take one hour at a time and move forward! It will take your body time to get used to the new you! we are still davening for a complete refua! rochel

  6. Oy, typing again cause my comment got lost. Yay, Sarah! What strength of purpose. Detox takes time and toll, but it will happen. Love u so much!

  7. Congratulations! I hope things get much better very soon for you. But what an accomplishment!

  8. Sarah, you are such an amazing person. You've been through so much and yet you keep looking up way more than you look down. You never give up and that's what is going to get you through this tough extrication from narcotics. I wish you strength and energy in the days to come as you consider the next step on your path to wellbeing.

  9. Finally! Great work Sarah, may your health continue to improve.

  10. Just read you blog...
    Yasher Koach! May you go from strength to more strength without pain!

  11. Congratulations on your persistence. I hope you sleep well!!

  12. Congratulations. You set the goal and met it!

  13. You are a hero.
    What you did is like climbing the Himalya bare foot.
    You did it.
    One day whatever you're going through will just be said in one short sentence:
    "It sucked, and now it is over".
    Much love from all of us.

  14. You are heroic!