Monday, June 8, 2015

Six days after, doing better.

My doctor gave me a standing ovation. 

Literally... she stood up from her chair and clapped. I told her nobody has done that for me since I played in the orchestra. She said she had never done it before, either, but this was such a monumental occasion, me telling her I did it, the weaning is over, she was so proud of me. That was nice, indeed.

So, the anvil was slowly lifted off my chest, and my free-breathing returned yesterday. That was one BAD experience. And, it's behind me.

I am dealing with lots more pain, mainly in my right hip, actually, the one which almost got fixed last summer (but the surgery got canceled because of my allergic reaction to the antibiotic on the surgery table). The left one hurts, too, but it's a different kind of pain. They are two totally different types of pain. My wonderful physical therapist yesterday decided to tackle some weak muscles in the left side. Wow, am I sore today. Easy exercises for some... but my body took it hard. I'll tell her next time and we'll have to tailor it a bit.

I am still doing Tai Chi, and that is perfect for me. Slow, rounded moves, moving muscle groups slowly and systematically. I can shape it to my own body, taking smaller steps for instance. The instructor is very special... lucked out on that one.

Sleeping is still off, but on Shabbat I actually slept through the night. Medicated, yes, but the medicine let me sleep. The insomnia I experience from weaning, no amount of medication put me to sleep. Then the RLS came on strong, and is still strong at night. Even so, I feel that slowly I will be able to get off the sleep medicine, too, but it's going to take time. I've been taking it for 7 years. It started because of having PTSD (post-traumatic stress disorder) after NF. I couldn't sleep because of the trauma, nightmares, pain. My body got used to the pills, and the pills granted me a good night's sleep. I haven't gotten off them since. It's going to be a lot of bad nights to get off them, and I am nowhere ready to start down that path. I am still very weak as a result of the last part of the weaning. everything in it's own time.

The substitute, if necessary, will be the Cannabis. I am now in the process of changing providers so I can get the right type for me. The levels of substances (THC:CBD) have to be tweaked so that it helps me relax (relaxes the RLS), sleep, and have less pain overall. It's going to take another few months before I get it, though, because of bureaucracy and needing to renew my licence. That is frustrating, since I know it is the only thing that helps my RLS.

Going to sleep... please Gd.
We're getting there. It's never going to be 100%, but I am doing what I can to get healthier. I am not yet reaping many benefits I look forward to, but a few of the side effects from the Fentanyl are fading away. That's awesome.

Many complicated issues to deal with, and feeling stronger pain is going to be a big adjustment. One day at a time. Quite literally.

It was good to get that standing ovation, though, you know? :)

22 comments :

  1. you did it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! so impressive. kol hakavod. wow.

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    1. I did it. Amazing. I amaze myself sometimes! I can't believe I am off that stuff. Each little freedom is significant. No counting days and wondering if I am right with needing to change the patch, no worrying about having it come off in the shower, no countig patches to know when I need to renew the prescription. Not to mention the side effects going away! it's really unbelieveable.

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  2. The finish line is in sight... keep your sights straight ahead... you can do it!
    We're rooting for you.

    xxxooo
    dev from NJ

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  3. You deserve a standing ovation every day, for a myriad of qualities/ attributes that you possess!

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    1. Ken, you are too kind. Awwww, stop [keep it up keep it up.... ;)]

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  4. You are a heroine, a model of courage with the ability to see beyond the present into an ever-better future. We have been wrestling those RLS and Fentanyl demons with and for you. Cherish your victory, which will unfold and further enrich you over time. You have earned pain-deafening applause as you show yourself and the world the fine stuff you're made. It is a privilege to be your real life friend.

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    1. Yocheved, thank you so much. It means so much to me to see your comment and feel it. Hugs!

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  5. You are extraordinary and a dugma of strength and determination.

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  6. Amazing!!!! You should feel very proud (we are!!!)

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  7. WOW - written with such humility, honest and gratitude! Keep moving on a small step at a time with the occasional big leap along the way too! (this one sounds like a GIANT leap). May you always be blessed!

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  8. !כל הכבוד! ברכות

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  9. Wow....applause from here as well...and a Siegried Call with triumphant high C...good luck!

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    1. Tzippi, yesssss!!! I actually tried to play Zigfried a week ago while I was practicing. Just for kicks... and my competitive nature, wanting to see if it's still in me.... no, that day it wasn't. I'll wait on that. :)

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  10. And it was well deserved.

    Edna

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  11. Good for you, you're proving once again to yourself and all those around you that you can achieve your goals. And an amazing inspiration and role model for your children as well. You're showing them that when life hands you incredibly hard pain, challenges and obstacles, that you can survive!

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  12. just take, day by day, and we hope the pain will be less and less! such great news and waiting to hear more and share in your joy! rochel.

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  13. Yay! Clapping here in Pennsylvania too! I'm so happy for you, and I only hope you are able to start the other changes soon.
    Hugs, Jackie

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  14. Dear, dear Sarah,

    I can't tell you how much I admire your strength and courage to actually see this through. You are one tough lady!!!​
    And know, that if you were able to do this, then with Hashem's help, you will be able to do anything that you truly desire to do!

    Kol Hakavod!!!!!

    Sending you so much love and admiration,
    Miriam

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    1. Hi Miriam dear,
      Well, I do know that I have powerful inner strength, Baruch Hashem. Yes, I've gotten off the narcotics, also Baruch Hashem.
      But wow, this is sooooo hard. The not sleeping well together with stronger pain- sometimes I feel like it's going to do me in. I mean, I know I can do this, but I can't imagine what the future holds. Is this going to be my new normal? I don't know if I can deal with the pain, if this is normal. It's strong, and constant. Maybe if I can sleep better the pain will be less, I do have that experience in my life- the more consistent and long my sleep is (I need 9-10 hours), the less pain I have. But this time period, with hardly enough sleep (and what I have is heavily drugged), and no pain meds, I am weakening.
      All I know for sure is that I am going to take a rest now. Thank Gd Robert is home today and said he would make supper. My hero!

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  15. You truly are an amazing woman! Here's to continued strength & healing
    -joanne(Oct98)

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