Mar 28, 2018

THANKFUL CORNER

So here I am in the chair, and so far (knock wood) things are running smoothly...
I managed to ruffle a few feathers, but I spoke up (respectfully), advocated for myself, and put my big fat fanny in the chair.  Instead of trying to remove FOUR kilos of fluid, we're going to remove TWO. I know the exact weight at which I crash, so we're going to stop trying to go below that just because the number on the chart says differently.

And as for Buzzy...he and the tech both behaved beautifully today, and I think he did so because I said "Let's stay away from this area and go here and here." I suspect that the stent was the issue, and that they were trying to put a square peg in a round hole so to speak, but with a little noodging...we seem to be in a much better place.  I know that he's very deep, so I just need to remind them to keep that in mind.

One thing I do want to mention though, is that my issues with dialysis are just that...mine.  I look back over some of my posts and I cringe that I told the brutal truth.  Dialysis is no joke, and I don't want anybody out there to minimize its horror...but I don't want to scare anybody facing it either.  So if you are a kidney patient and you are headed in the dialysis direction, please don't think my experience will be yours.  You can do this, I promise, but you really do have to put your warrior underpants on.

The other thing I don't want to do is minimize my complete awe and respect for my techs and nurses here.  Yes...some are better than others, and some seem to just get me better than others, but every single one of them is a blessing in my life that I thank God for every day.

As are you, my friends.  I looked at my Jersey Boy this morning and kissed his face and said "I don't have a clue how I would survive this without you here", and that goes for all of you too.  On days when I can't get out of bed (or worse...out of my head), you are there to pick me up, slap some lipstick on me, and get me moving.

Thank you for that.

It's been almost a year since Miss Susan started the YouCaring Fund for me, and I wanted you all to know that my transplant list of things to do is complete because of it.  There were tests and appointments and paperwork up the ying yang, but there was also the warning/requirement to gather as much money as I could to cover the cost of travel, housing, and medication.  Thanks to you...that is done and has allowed me to concentrate on all of the other stuff.  There just aren't any words or poems or gestures or songs or prayers that will ever be able to pay that back.

OK...time to go for now.  The team is here for a monthly check-in, so I want to gather my notes.

Happy Futzingday, Dearies!


20 comments:

  1. You go girl! My mother is a retired dialysis nurse and I have been sharing your story with her. Her comment the last time we talked was "When this is over, she needs to teach classes to dialysis patients on how to do it!" Today is just another example of how great you are at getting through this in the best shape possible. Anonymous-Debbi

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  2. Bless, you, Coni...and wishing your and Jersey Boy a lovely Easter.

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  3. Coni - You just thanked us. We gave because we wanted to. Your health is important to us and if we can help just a bit to ease the burden, well then we accomplished that. You keep on getting better. Enjoy your stitching. May you and JB have a great Easter weekend.
    Cindy in northern Illinois

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  4. Coni, you continue to be in my thoughts and prayers each and every day and more so on chair days. I am glad you spoke up for yourself before sitting in the chair today. Like you said, everyone's body handles things differently.

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  5. Good job speaking up, Coni. I know how difficult that can be, especially when working with specialists. But we are the specialists of our own bodies, so good for you!

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  6. Hi Coni, I am so pleased that you felt able to ask for what you needed today. Hope you have a better time post treatment because of it! Thanks for sharing your story with us, both stitch and non-stitch! Big love, Jackie in Uk xxx

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  7. Coni, I am a nurse and I would much rather a patient or family speak up and tell me what I can do to make medical experiences as good as they can be. You deserve a decent day in the chair. I think you are doing very well. Keep your chin up!

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  8. May God bless and keep you and your Jersey Boy, Coni. So glad that you felt comfortable taking a stand. I'm not sure I would be that brave --- Happy Easter and have fun!

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  9. You are AMAZING!!! And don't ever forget that!

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  10. Good for you! You have to speak up. You know your body better than anyone and you know what you can tolerate. You can work up to the kilos. Maybe you won't feel so drained tomorrow.

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  11. I am SO PROUD of YOU!!!! Your little report brought tears to my eyes! Medical staff are the backbone of medical treatment and 99.99% are looking out for their patients, just sometimes, as in other occupations, they GENTLY need to be reminded that you are CONI, or Suzie or Veronica...a real person,not just a patient & they will quickly jump right back on the "patient first" wagon. You may have to gently repeat the directions of your particular Buzzy, etc each time until it becomes 2nd nature to the staff, but damn, Coni, you did GOOD! No one knows our bodies than we ourselves do! I will continue to pray that you have a wonderful & relaxing evening & week. We all love you, your humor, your stories & your human-ness! You go, girl!!!!

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  12. You just may have solved a good many of your problems by
    apprising the staff of what you felt would work... tomorrow will tell the tale and I pray your instincts are
    correct and that today's treatment proves to have been routine. Bless your vigilance and determination. Covering you in prayer and boundless admiration, dear one

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  13. Coni: Good for you, we need to be our own advocates and speak up, the docs and nurses do not always know whats best.

    Blessings
    Catherine

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  14. Okay Girl...what's with this "payback" comment? I feel I can safely say that not one single person gave to that fund for payback. I've read your columns and blog for years. You are one of my very best friends, just one I've never met in person.....yet. Of course I would lend a helping hand...how could I not help my friend? I truly wish there was more I could do to help. I am hoping that now you are the strong advocate for yourself that if you DO need something you will let us know....and without worrying about that "payback" thing. Erase that word from your vocabulary please. And like Connie above, I am so very proud of you for speaking up. Sending super good vibes...Pamela

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  15. Still cheering you on from over the pond. Attagirl Coni! xx

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  16. You got this!! All of it! I'm sure I would not be dealing anywhere as well as you are with all of this.

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  17. Every person on this planet is different. Doctors don`t always remember that what worked for the first 10 patients might not work for you. Polite nudging is the way to go, also keeping up a good dialog with your care providers. If you don`t tell them, they won`t know, plain and simple. I had a blood tech ignore my telling him the best place to draw from and he gave me a bruise the size of Toledo that took 4 weeks to fade. The next one took my advice, not even a mark, and it didn`t hurt at all (unlike the first one, holy heck!). My issue is so minor compared to yours, so I am so glad you spoke up! I am not religious, but there does seem to be some higher power that provides us with people just when we need them. My husband was one, sounds like your Jersey Boy is another. You are a strong lady Coni...xxoo

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  18. As you are a blessing in our lives, Miss Coni! Love, hugs & prayers, Cathryn ♥♥♥

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  19. You ARE a warrior and you've got this!!

    Thanks for sharing your life and your humor with us.

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