Perhaps you are aware that Marg (aka @girlbeforemirror) has been struggling with a spinal injury for about a year.
For @girlbeforemirror steemit has become a sanctuary in which she could reinvent herself and escape the reality of her illness, even for a moment.
She treasures the interactions here because she is appreciated for what she can do now, rather than be reminded of the limitations placed on her by the sudden onset of a disabling illness.
Marg was passionately engaged in charity work last year in support of survivors of childhood sexual assault.
We have since learned that she has a rare connective tissue disorder that means she probably shouldn't have undertaken the task of running 7 consecutive marathons in ONE WEEK (flying between cities as she went).
Marg running one of the 7 marathons in 2016 with fellow team member Mark.
But those that know her will understand that she sees her stubbornness as a strength.
We’re hoping she will utilise that same stubbornness that prevented her from withdrawing from the event (even after both her knees blew out on the second marathon) to get through this next challenge.
Among other injuries, Marg tore the tissue around her spine. She was readmitted to hospital again yesterday, for the FORTH TIME THIS YEAR.
The spinal issue is but one feature of her complex health scenario. She has a connective tissue disorder
Marg’s been off work for the better part of a year now, with no end in sight
And for quite some time we didn’t know what was wrong. She saw half a dozen different specialists (paying through the nose for the privilege), with all of them dismissing her confusing and seemingly unrelated symptoms as a neurotic woman bitching about life.
This was a very frustrating time, not knowing what was wrong… And not just for her, it’s taken it’s toll our two kids and myself.
The most recent admission with our youngest visiting
Eventually, after considering that it might have all been in her head, we found a group of people online (thanks google) who seemed to have all been through the same thing. The same symptoms, the same weird physical traits, the same mismanagement and misdiagnosis from the medical professionals that are meant to look after the most vulnerable, or at the very least do no harm…
Ehlers Danlos Syndrome and Spontaneous CSF Leaks
What is a CSF leak?
A CSF leak is a doozy. Basically, the fluid you brain floats in inside your skull runs down the length of your spine in a sack called the dura. Dural leaks can be spontaneous, or from some trauma like complication from spinal surgery or even the common lumber puncture used in many childbirths…
What is Ehlers Danlos Syndrome (EDS)?
Bloody good question! I hadn’t heard of it a year ago myself.
Basically the connective tissue is fucked. This can include skin, ligaments, tendons etc, but also arteries, and you guessed it, the dura.
About 90% of our bodies are made up soft tissue.
While the most common feature of EDS is often hyper mobility of joints, it can manifest in many different ways.
People with EDS are more susceptible to spontaneous ruptures of the dura because the tissue is compromised.
In the short period of time that she could get herself upright between hospital stays she attended this year's anniversary fundraiser, and also shaved her head in support of her team, once they hit their fundraising goal.
Posing with guitar signed by Ian Moss (of legendary Australian pub rock band Cold Chisel), auctioned for their charity
She has revelled in her community work, but in the process she has become very sick. She hasn't once expressed regret in doing it, and after the creation of our children, she considers it her proudest achievement.
@girlbeforemirror most likely looking at having her 3rd spinal repair (we still haven’t completed payment for the first one), after being admitted to hospital again last Thursday.
The doctors aren't terribly hopeful of it working and have proposed open spinal surgery as the probable next solution.
Marg isn't scared of the surgery. She’s an eternal optimist, or as she describes it, denial and radical acceptance. I think we could all learn from this attitude - my anxiety and panic attacks certainly could.
Her favourite staff member, Molly the therapy dog!
But the truth is, she just wants a dimension of a quality of life back.
Not necessarily the life she had before, she told me going backwards and returning to what you were before is not what life is about.
She wants to be here for our kids. Be at our eldest’s birthday as they become a teenager in a few months, and read bedtime stories to our little one.
Asking for help is hard
Maybe it’s just a male thing. I’ve heard that before - things like “men don’t go to the doctor until they’re really sick or it’s too late” or “real men don’t cry” or “a man doesn’t ask for help, he’s self reliant and can do everything for himself”… I think it takes real balls to let people know you’re vulnerable.
On Marg’s first hospital admission I tried to do everything myself. And I did. Work, getting one kid to school, one to daycare, cooking, cleaning etc etc. I worked myself into the ground.
I also abandoned steemit for the first time since joining some 8 months prior. With no time on my hands for anything other than what was needed to be done.
Having mum in hospital for Easter was confusing for our 2 year old, and really pissed off our 12 year old.
After 3 weeks in hospital she came home and things were still tough.
She was still laid out, fragile and didn’t appear to be very well. I was still trying to hold down a full time job plus do everything for her and the kids on my own… I guess she could see the toll it was having on me. Stress, insomnia, anxiety, depression… So she asked a friend of her’s for help. Some home cooked meals. Such a small gesture made me feel like a fool. How hard is it really to ask for help? To let someone in?
Then after 2 weeks or so she was back in hospital for another two and a half week stay. This time she rallied my (very casual) band members, a bunch of people we knew from the neighbourhood, to bring us home cooked food. I had people bringing the kids & me all sorts of things, like pasta/meatballs, veggie lasagna, pastries, sausage rolls, nachos, soups & breads… I still haven’t had an opportunity to properly thank everyone that helped.
Don’t let them see you’re hurt
Being a stubborn man, raised by an old school stubborn father, I felt extremely uncomfortable letting people into our lives like that. Embarrassed even. I mean, this was a man that taught me that if I was ever hurt not to show it. “Don’t let them see you’re hurt”, and “get up and keep going” were bellowed out from the sidelines by my dad when I played rugby as a kid.
I’ve omitted the emotional and angry rant from this post. I did write it, but instead have tried to keep it constructive and dignified - a very difficult thing to do given the situation.
A sad selfie from one of her recent admissions, pre-headshave.
I have never asked for upvotes or resteems, but @girlbeforemirror needs your help!
And so do I. We have been together since we were teenagers. We are everything to each other. We have propped each other up many times over the years. Asking for help from anyone is new to us.
I love you x
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Let's see how this post does. I'll resteem it later. Let me know if there is anything else I can do later on. I'm here for you.
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Thanks @papa-pepper! So much love pouring in!!
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Glad to hear it. Keep us posted on all of this.
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@papa-pepper
I noticed you have compassion for others even tho you have a high rating. When it boils down to it we are all people with struggles. 👍
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I've noticed the same thing...love how much he contributes!
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@papa-pepper
I think it shows Christian character having a heart for people like he does. I think a person gives and it will be given back. Maybe not always in monetary value but other ways that money can't buy.
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Well said.
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Thank you!!
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https://steemit.com/steemit/@surpassinggoogle/100-sbd-donated-a-steemgig-and-liquid-rewards-from-this-post-to-raise-funds-to-help-girlbeforemirror-with-her-surgery-please
Just so you know there is more support on the way. The truth is we love you but Jehovah loves you beyond words. So let's all try prayers too!
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This is AMAZING! I'm truely stunned at the generosity of the steemit community!
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YES yes. Be strong!
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I know you are going to be fine, because you are too stubbornly positive to let it be any other way!
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U better love him! :P
He is doing the hardest thing for him cause u make him such a sap (congrats on deserving that btw).
Dont worry @azurejasper, having a wife and kid...im no less of a sap. If it comes to being a man or a sappy man. These days i rather prefer the sappy man...and those who made me that way :P
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Chin up :)
I hope it gets better from here, in more than ways we can imagine.
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May God Bless You And Make You Healthy And Cure. Ameen
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@girlbeforemirror & @azurejasper
I'm new to SteemIT so my account had only 15 SBD. I've sent 10 SBD as small support, resteemed and upvoted.
Hope you and your family find a way through this.
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Wow. The old widow who could only give a single copper penny actually gave more than anyone else...
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Mother is only one. Life is only one. Appreciate it and help if you can, otherwise this world is going to hell... But thanks @thomasaquinasftw
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Following now :)
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I remembered this story too.
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So generous! Thank you so much.
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Sorry for so small amount. Wish others could contribute just the same as i have... World would be better place. Please continue fighting and even when you feel the power is gone, just remind yourself on this post you wrote. Fingers crossed hoping for the best.
Take care.
Digital Lucifer
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Thank you again. Truly amazing of you, and thanks for the kind words of support - it'll mean so much to Marg!
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So sweet of you :)
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Upvoted! All help counts! =)
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Thanks to @azurejasper and @kaylinart and @clayboyn
my replies got 25$ in upvotes. Karma is one and only, but there is not much people who appreciate power of life.
Since i've earned this money from nothing, i would be bastard to keep all for myself.
I've sent last 5 SBD i had in my account to Marg.
Cheers
Digital Lucifer
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Your kindness has touched us greatly.
Thank you
https://steemit.com/life/@girlbeforemirror/sunbeams-and-some-beans-for-murda-ra
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Many thanks!!! I'm a bit busy today about work, but i've read up on post this morning, and i can't just reply. Will talk later. How are you feeling Marg ? For sure you hubby is giving full power and encouragement, be patient and have will. It's not your time yet. It can't be :)
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Wow! Cheers, you're a legend @murda-ra!!
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Dealing with something that causes you physical pain but doesn't leave any outwards sign is difficult.
I've had chronic pain for over two decades and I was told for the longest time "its all in your head dear" or "don't you think you're being a bit dramatic" or "it can't be that bad, you look fine", but they don't know how bad it is and we always try to hide it, until we can't anymore.
Why do we do that to ourselves? Why can't we just let ourselves show how much it hurts? Its because we seem to have been taught the same lesson from our fathers, the don't be a baby, stop that crying or I'll give you something to cry about mentality...
I'm sorry you have to go through this because I know how hard physically and emotionally it is when you are suffering every moment of every day but feeling you need to be strong for everyone else.
I hope you heal quickly and that this surgery actually works for you. God bless you and your family.
I don't know how to donate, if you tell me how I can try it. I'd like to help, it won't be much, but every little bit adds up.
Praying for you all. :D
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Resteemed, followed and I sent all of the money I've made since being on here this past week. Its only 24 SBD but it reminds me of the time I wanted to make a difference but couldn't for someone. I was driving down the road one day and had seen a woman that could have been my grandmother having fallen on hard times because what else can I say but things happen. I was thinking about maybe I can do this or maybe I can do that and by the time I was able to do anything she was gone. I thought to myself I would have given her everything from my wallet and more to just to help her if only for one night. Regardless of my story I wish the both of you the best. Not saying that you are in the same situation but sometimes we just humanity on our side.
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So generous! I'm truly humbled. Thank you very much. It's truly amazing how awesome people can be! I live in a big city where most wouldn't look sideways at someone that has fallen on hard times.
I'm at work at the moment, so no time to reply to everyone right now, but sincerely, THANK YOU very much!
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I used to live in New York and can remember times being on a stopped train because someone had thrown themselves onto the tracks. Most of the people would say they couldn't have waited another 20 minutes. No worries and glad to help as I wish I had more. Also, if you need alternatives toward raising/supplementing your income let me know as I work in SEO and a few other fields. Don't worry I'm not here to sell you on anything, be the next guru or tell you I have funds in your name that I need your information so you can become a millionaire...lol. Information is free...the cost only comes from when or if someone is to apply that info. Have a good one.
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So sorry to hear! Hang in there, resteemed and upvoted!I also have 7 SBD in my account, it's heading your way, @azurejasper!
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THANK YOU!!
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Thank you for your support x
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I really admire @girlbeforemirror's positive spirit and that will help carry everyone through. Keep fighting!
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Yeah, she's definitely a "glass half full" kinda person. Thanks for the support and kind words.
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God bless this girl
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Thanks
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Thank you
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Your wife has a beautiful soul and her positivity is one that we should all strive for. I've upvoted as well as reposted so that my followers can also have the great opportunity to read this touching article. I'll be following and look forward to her swift recovery. She and your children are so lucky to have such a caring and loving husband and father, your family is in my prayers.
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All the best :)
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Cheers
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Re-steemed.
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Best of luck with the treatment, upvoted, followed & sending SBD to @girlbeforemirror.
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I'm really overwhelmed right now. So much steemit love! Thank you very very much!
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Thank you . I am still absorbing this amazing thing that happened
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You are very welcome!! God bless you!!
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Hello @azurejasper A wonderful post(even with painful reasonings)....it's beautiful to witness your love for your wife in these words. I am a fellow EDS-er (part of the Zebra family too, if you will!) with similar comorbids. I know this disease is quite difficult and healing from surgeries is a long road. "Normal" is vastly different each day however it does become easier to manage with time, even with the progression. Your wife sounds like an amazing, loving and very strong woman!
Curious, Who is her neurosurgeon surgeon? One of the EDS/Chiari/CCI, etc experienced doctors? Dr B (NY-can give more info if desired) did my CCF for the CCI and leak repairs (had to forgo the decompression once leaks found) ICP bolt insercion and tethered cord release. I was only diagnosed recently too....also took my body crashing to get the diagnosis (and no longer called crazy!). Im so sorry this was your wife's experience as well. Lots of great support groups on Facebook. I would love to start an EDS and it's comorbids support group on here! Once she's on the mend perhaps we could pool our energy to create such a thing! Best of luck in the next surgery. I will keep you both and your children in my heart. One moment at a time.... ❤️. If in need of any medical resources, please let me know and I'll help however possible. Thank you for your courage and vaunerability in writing this post! Thinking of you @girlbeforemirror!
Lots of healing energy coming your way!
❤️-Stephanie Price
Ps If you need any support or information Facebook messenger would be easiest first contact. Or I will get set up with steem chat. Kintoallbeings on Facebook too. :)
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@azurejasper you should be so proud of yourself! Your love bursts forth like sunbeams from your words, and learning to accept help is a huge (and vital) step. @girlbeforemirror is a beautiful soul and it shines through her posts. Upvoted and resteemed.
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Thanks for those beautiful words @onetree. Feeling a little overwhelmed right now, but thanks so much
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Stay strong. You're the best husband any woman could have hoped for. Upvoted and resteemed, and I sent you a bit as well.
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Don't know about the best haha, but I am trying to do my best.
Thank you very very much for the support!
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Resteemed and sent a little gift of the only 0.249 SBD I had left. Prayers to your wife and your family.
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Thank you so much! It's amazing how generous people can be!
I usually see the worst in people in our society, but while this experience has been terrible, steemit has shown me some of the best! THANK YOU STEEMIT!
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Transferred another 2.757 SBD to azurejasper. Wish you both the best.
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I was reading this with tears rolling down my cheeks.
Incredible woman!
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Thanks for sharing this @azurejasper . I first read about the story of @girlbeforemirror via @surpassinggoogle blog post and was touched. I do not have much word to say but to wish @girlbeforemirror well and the family strength. I send in my support via upvote and well wished. Following you in order to stay in touch. Bless you all.
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Cheers! It means a lot to us!
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Welcome, and more success
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stay strong and blessed.
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Thanks so much
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My upvote isn't worth a lot, but I've followed you both and will do it often.
I've been dealing with chronic illness since my mid-20s, and social media (paired with medical-grade cannabis) has distracted me on a lot of painful sleepless nights. Aside from going to physical therapy and getting a really good psychologist, it's probably done more to keep me going than anything else I've tried. And as you guys know...you try everything.
I hate that this has interrupted your family's path. Sending up a prayer that you are able to find the right health care providers who can help you find a new, acceptable normal.
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Thanks for the comment and support. It means a lot to us
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Aww Get better!! I'm sending a donation, And Resteeming this! I hope you get everything you need!
You are amazing @girlbeforemirror I admire the fact that you have run MULTIPLE marathons! That is so inspiring.
It makes me so sad that you are sick! Get better soon!!
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You're awesome! Thank you so much!
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I am resteeming and will also write a #payitforward post on her behalf. Let's see if we can give you guys a hand. Hang in there and thank you for sharing your story. You guys are amazing. HUGS.
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Thank you so much! I'm so grateful and truly humbled.
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I hope she gets better. I have a spinal disability myself and I know how terrible it can be. All best.
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Thanks so much for that.
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my pleasure
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my vote isn't worth much, but i've resteemed this for visibility! wishing you all the best.
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Thanks, ever little bit of support adds up, and it a lot to us!
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You get a 100% barely-a-dolphin upvote in support! Best of luck with the treatment. Hopefully more invasive steps are not needed.
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Thank you so much. And yeah, hopefully she can get back up on her feet without the crazy surgery.
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I loved your medical explanation :P Upvoted of course and best wishes
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Thanks. Maybe I should have been a doctor hahaha.
Unfortunately it's been really hard to get any single doctor in this country (Australia) to look at the whole picture. Seems they only care about their single specialty. It's like they have tunnel vision.
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I am afraid that's something not limited in just your country or mine ..I hope future doctors (like me:P) won't be like that...I know it can be better..stay strong my friend
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Will definitely resteem this... you are a beautiful person and I pray the LORD will bring you a swift and miraculous healing. Never give up hope!
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We love her, she'll recover soon and I'm optimistic about that, please @azurejasper, we all know that this is a hard and difficult time for the family but be courageous, she need you most now. LOVE FROM STEEMIT FAMILY.
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Thanks for the kind words!
And Thank you to our entire steemit family! I know she'll be reading all these comments and it'll really mean a lot to her.
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Resteemed and 100% upvote. Hope it helps in some way.
Sorry to hear of @girlbeforemirror's health situation. Been following her for quite some time. Wish you well on your healing journey.
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Thank you! So much support flowing through, it'll mean the world to her!
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Hey sweetie, you've been through the mill just a bit!! wishing you all the best of everything and a speedy recovery. I have upvoted and following you. Bless you, be well. x
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Thanks. I'm sure @girlbeforemirror will be as overwhelmed by the amount of support coming in as I am! Amazing
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I don't have as much influence as @papa-pepper :) but I will resteem and upvote as well. I hope the best for you!! I am sorry these things happen in life. But I do hope you have a good support system. And if you need to talk to someone ever. I am always here. You may not know me but hey, that's what steemit is for! :)
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Not many of us are even close to @papa-pepper! hahaha
But thank you, it's great to receive such positive support.
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This is very true. Lol. And sure thing. Love to show support for ya.
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Quick question, about how much total in bills are you guys looking at? (if you don't mind me asking)
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God bless this girl. Upvoted!
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Thanks
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All the best to her.
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Thanks!
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Brother OMG I am still crying here. I wish I had power on steemit... I wish I was a whale... I would give you all the voting power I had and still will. I have followed both of you and I will vote you two up every chance I can. I have lived through so much humbling in my life so when I read these things I feel what you feel... I know how hard it is to have to ask for help but never be afraid when it is something you love. I am still in shock after only being on Steemit for 3 days I have ran across 2 posts dealing with EDS. I have many years in and around medicine and I have never actually known anyone afflicted with this...
The other steemer is @kintoallbeings
Please steemit world be kind and upvote these people. I send all the love the world has to offer and pray and hope and wish the best!
Peace,
The Last Sage
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Thanks for your lovely words of support. It's amazing how generous te steemit tribe can be!
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Upvoted and reblogged. Will try to collect some funds to donate.
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Thanks for your support!
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I understand what you are going through for my oldest daughter (32yo) also has EDS. She looks a lot like you in that she has similar facial features, hyperdactyly, has had issues with her spine (minor at this point), trouble with her knees and other issues. Up to this point she was diagnosed with Marfan's Syndrome which is also another connective tissue disorder. She has a lot of pain though I think that it comes from fibromyalgia which many woman suffer from, such as myself. I will keep you in my prayers for the doctors to find a way to help you so that you may have a much better quality of life that has eluded you up to this point. As the Brits say, keep a stiff upper lip and soldier on knowing that people love and care for you!
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I'm sorry to hear about your daughter. I find it amazing that people with EDS and similar disorders have similar looks. You can spot people in the street that probably have some form of it just from their (terribly good) looks.
Thank you for your kind words of support, and
KEEP
CALM
and
STEEM ON
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She is certainly worthy of all of our assistance! One of the kindest friends I've made on steemit and extremely humble. I was unaware of the severity of what was going on because she is always so positive! Thanks for letting us know so we can help out our friends in need!
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Thank you, and yeah, it got kinda dark there for a while, on her second hospital admission... was a very scary time. Hopefully we're now on the right track as far as ongoing treatment goes.
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It's always darkest right before dawn. Don't worry, the sun is coming to shine bright, I believe!
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Upvoted & Resteemed.. good luck in everything and my prayers.
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Thank you very much!
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Doctors are notorious for not believing women when they report pain. I know firsthand. I hope your wife gets better.
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Yeah... remember the TV show House? We all need doctors as deranged as that, doctors that bother to look at the whole picture.
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My thoughts, prayers and upvotes go with you.
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Your support is greatly appreciated!
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Upvoted and resteemed for you. May your wife have a speedy recovery and you are one awesome husband and father. God bless you and your family :)
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Thanks! So grateful, so humbled by the support. Every resteem this and the related posts get, the more chances we have to touch other people's lives. A ripple effect of change, not just related to this illness, but @girlbeforemirror 's other charitable work.
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My little upvote. Last month I spent too much time on my left knee, with too much pressure, and it swelled up, just below the kneecap. After it got worse everytime I did any damn work, I went to the doc.
The diagnosis; prepatellar bursitis. The cure? Don't do that.
God I hope Marg gets better medical help than I did.
edit: resteemed for max exposure
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Bursitis... I think that's part what Marg did to herself (both knees) while running her second marathon last yea (2nd our of 7 marathons in 7 consecutive days, in seven cities..). I could be wrong, but that sounds familiar. And yeah, the "oh you don't what that" reply from the doctor is a real kick in the guts.
Thanks for your support, and I hope you knee gets a chance to heal properly!
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Well, the job I am on is replacing the subfloor of a dwelling, and then reflooring it. Pretty much on my knees all day every day. It's not getting better, but I can't not work.
Until I can't work at all.
Oh well, at least I'll die old. That's more than I could have expected when this adventure began.
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You, your wife, and your family are all in my prayers for strength and calm. I'm glad you found people with her condition -- this makes all the difference in my experience. I suffer from a couple of chronic conditions myself and no one gets it unless they are directly involved. Your wife's spirit is shining through and the love in your family is very obvious. I'm glad you posted and asking for help is a good sign so we can support you.
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Your kind words and support mean a lot to us. Thanks so much!
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Upvoted and resteemed :-)
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Cheers
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She is one of the most awesome people I met here. Her art no post were inspiring. So I m looking forward to have her back here. Good luck.
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Thanks!
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I hope for all the best for youf wife and family. Upvoted & resteemed.
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Get well soon @girlbeforemirror. Upvoted. Resteemed and donated
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Thank you so much!
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The right words, if there are any, elude me. I will entreat on your behalf.
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So much love
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Please don't get me wrong for sharing my post, it is over 10 days old anyways. I really wish the best for your wife.
https://steemit.com/health/@readmore/robo-docs-mazor-robotics-spinal-cord-brain-surgery-robots
I have read so many positive reviews about this and using Mazor robot assisted surgery decreases the possibility of repeat operation by a large fraction. If you can find a place that uses this robot, your wife can benefit from it.
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I dont much about you but I feel you are a good person caring and loving being and I will keep praying for you..blessing dear
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Thanks
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I am not worth much votewise but I will resteem this!
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Thanks heaps, every share gets more eyes to see it, and hopefully more people to know they're not alone, whatever they're going through.
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I've been bed-ridden myself for almost 2 years now due to disease. I obviously don't understand her particular disability but I understand disability and she is clearly so, so strong. Following her and you so I can follow her journey.
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Love this!! ❤️ Followed/upvoted/resteemed. Very nice post!!
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Thanks for your support!
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May God bless and keep you both... You're in my prayers!
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Thanks for your support!
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Looks like you can use some right now! The beautiful thing about Steemit is that it's a real community! I upvoted & Resteemed your post... I'll try to write one after a while and encourage my followers to help.
@papa-pepper is one of the Steemit heroes!!! When I needed help awhile back, he was there- you've got a stalwart friend there and he can do a lot more than I can, but I'll help as much as possible!!!
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Good luck to you. Peace.
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And to you. Thanks
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This post received a 1.8% upvote from @randowhale thanks to @clayboyn! For more information, click here!
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Thanks rando, and a massive thanks to @clayboyn, your donation is humbling and received with gratitude and thanks. (People reading this won't know that @clayboyn sent us $77.777 SBD, a significant amount of money, and a timely nod to Marg's mental running only 12 months ago). You're a legend!
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We all help each other out in ways we don't always know! She has helped me on here too and maybe I'm also a bit delusional when it comes to positive thinking, but I got a feeling steemit is going to help you guys out!
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Upvoted and well wishes sent Marg's way!
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Cheers!
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Blessings to you!!
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I've just stumbled on your post from a resteem from @papa-pepper, Now following both @azurejasper and @girlbeforemirror.
Can't imagine what your family is going thru, sending prays and blessing to you all.
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Thanks so much. (@papa-pepper's awesome!)
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I imagine it should not be easy to share this situation publicly. But I'm happy about it, because now we can help, be part of something bigger, even with a simple gesture.
I hope you get a lot more than you need.
God bless you.
Resteemd, upvoted and little donation.
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Nice to found good people!
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Wow - what an inspiration you are
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Very emotional, thank you for sharing. You are a role model and there is so much you can share and teach others with your own self.I will definitely Support @girlbeforemirror thanks to your post!
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Your wife is a real fighter !!!
You are a great man for supporting her!!!
God's plans are perfect ... And you will came out of that situation together...
My "upvote" isnt worth too much ... But I give you my grain of Sand as my contribution to you... And also give you a reestem!!
I send you my strength and faith, from Venezuela!
With love: Daniela
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Be strong and have faith*
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Hang in there!
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Cheers!
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My account is pretty week on upvotes but I will resteem it for you.
Just know that you do not need to do this alone (since you also know that there are tons of people who has suffered this) and stay in contact. Everyone will do their best to help, even though we are all over the world and too far to be there physically with her and you and the kids.
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I am really sorry @azurejasper , I tried using the randowhale system but it didn't work and it ate my 2 SBD. I have transferred another 2 SBD to your wife's account.
I don't have much, but I know a phrase in Malay
I hope more people will be able to help out.
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"Vulnerability is a hidden form of strength!"
It only shows that you're still alive and sensitive and open enough to see and to feel what's going in the world! It only means that you're not following the wrong path and turn your back on anybody else's difficulties one has to work through!
We're all connected with each other... - that's within God's plan! And when I read your story I can only guess, that sometimes God gives the hardest trials to those WHO ARE THE BEST!!! - as your beloved wife is... - for sure!
The best to all of you... -
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I wish I could say that I dont know what you're going through, but i know it very well. My heart aches for a cure for your family! Let's hope there is a breakthough in the research for these awful diseases, but until then STAY STRONG friends. We're here for you🌻 Upvoted and resteemed
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sending good vibes your way, be well!!!
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Its not much worth, my upvote but its something. Resteemed too - whish you guys the best of luck and i hope the earnings of this post will steem through the roof and help you with the hospital expenses
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Hard to read. I don't really know you, but I wish you all the best. Keep your head up and take my resteem!
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I know her and upvoted to help and will also resteem
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Sad story....Good post, hope you will be find a good way through this ....
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I so feel for you and your loved ones. I have no monetary value on Steemit (or anywhere else) yet, so methinks my upvote does not mean a lot. I have not even started blogging yet, although I have some profound thoughts that I want to send out there, when the time is right.
However, what I can give you now is that which you will understand is special and very personal: Our Lord, I pray today that you make your Holy Spirit so present in the lives of this family, that you let them feel Your presence in a very tangible way. I pray for @girlbeforemirror for Your generous grace, and that You heal her, so that she may be there for her family for a very long time. Lord, I dedicate father and mother and children to You, and ask You to hold them close to You with all the love and grace that we know You give so freely to those who believe in you. I am asking it because I believe. In the Name of the Father, the Son and the Holy Spirit. Amen.
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I'm new to Steemit and this is the first post I've read, and have yet to introduce myself....but I felt compelled to respond bc this story really struck a cord...I wish I could help financially, but I'm in a similar situation. However, please know I feel your pain...literally. MUCH PEACE, MUCH LOVE, and MUCH LIGHT to you and your family, especially in this most trying time. I feel her strength through your words, and photos...she's clearly a force to be reckoned with, and EDS is no match for her!
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A positive message before you start your week Azurejasper.
"Spectacular achievement is always preceded by unspectacular preparation" - Robert H. Schuller
Flatrider
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Cheers!
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You're welcome! :-D
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My prayers and my hugs to @girlbeforemirror .
Upvoted and resteemed! Stay positive.
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Stay strong, we're praying for you
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Thanks!
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life is such that you can never calculate what happens next no matter how prepared one can be. my only wish for you is that you have close people you can rely on and i hope you are not going through a lot of pain because i lost a very close relative of mine to breast cancer and i can say that it was not an easy thing to deal with. I pray and wish that your nature and stuborness will motivate you to fight this illness with all your might. And remember that you have a lot of support from people like me and other people on this platform and dont hessitatae to ask for my help when you need it
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I would upvote, gladly, but as it is at present an upvote would offer no benefit, my voting power is depleted, and even if it were full my SP is so low it would only add 0.01 to the value of the post. Instead I will offer my prayers and a resteem, in hope that those with decent voting power will see it :)
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Thanks for your support- every resteem helps!
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Life is never stopped by death, only punctuated.
I think your charity work might have granted you some realization of this if you did not already understand this, which by some of the backstory seems indicated.
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This post has been ranked within the top 25 most undervalued posts in the second half of Jun 25. We estimate that this post is undervalued by $135.68 as compared to a scenario in which every voter had an equal say.
See the full rankings and details in The Daily Tribune: Jun 25 - Part II. You can also read about some of our methodology, data analysis and technical details in our initial post.
If you are the author and would prefer not to receive these comments, simply reply "Stop" to this comment.
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So much love and luck to you both during this most trying time. I am sure you have tried all of the natural remedies for repairing tissue, like l-lysine, gelatin, fenugreek and monolaurin. There are others as well, but I don't want to be ignorant and pretend I don't know that you've probably already tried everything. Keep those positive vibrations super high and know that we are sending more love your way.
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Thanks for thos good vibes!
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Very intense story. Beautiful to see how this community comes together to help amazing people like you guys. Much love and blessings for both of you!
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What an awesome attitude of courage. I believe in prayer. Following.
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She has displayed rare courage and optimism. A lot of us would have given up hope along the way. But with encouragements and support she will feel loved and cared about. Psychologically that can quicken the healing process after surgery and make her worry less. I STAND WITH @girlbeforemirror
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Followed|Commented|Upvoted| Reestemed :)
Just don't do more because I'm brand new here with 0 in the wallet!
But much much love and positive vibes to you guys!
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May God help you @girlbeforemirror . You are really inspirational. I hope you will able to back for marathons and many other outdoor activities. I will keep in touch with your medical conditions.I feel tears and I learnt many things when I am reading the post. I admire you lot. Thank you @Azurejasper for sharing. I wait for something positive result from you.
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Upvoted and Resteemed.
I hope for your sake you look into Cannabis as a safe and effective treatment for what your dear wife is going through. As someone who has been working for years on repairing my spine from a similar issue, I can't say enough good things about cannabis and it's medicinal effects. I also had to really learn yoga.
May this tough time pass easily for you and yours.
Kindest regards.
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Thank you for sharing your story. I'm so sorry to see @girlbeforemirror having health issues. Sending you positive energy. There is never anything wrong when asking for help, when it is needed. That's what communities are for, to support each other.
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Resteemed and upvoted. Autoimmune diseases are the worst because it seems there is not much known about them. Hang in there and stay strong.
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Upvoted. Wishing by you well, @girlbeforemirror! Sending you postive vibes!
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Does anyone know why is lowering the value of the posts? :(
This one had reached 500$!!
What's going on?
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I think the estimated value is reflected by the price of Steem, so as the price of Steem goes up, the value of everyone's upvote goes up, visa versa when the price drops, which I think it's doing at the moment.
I think the amount of Steem paid out is the same, but the value of that Steem can be more or less, depending on the price one unit of Steem is worth.
Anyone correct me if I'm wrong!
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Ohhhh i understand... Or thats what I Think...
If so ... I hope the value of Steem goes up a LOOOOOT ...
God bless you!
Stay super strong !!!
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Cheers @hada, and me too, the value of Steem going up up up is what we all need!
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Here's a post explaining it in detail-
https://steemit.com/steem-help/@sykochica/answering-common-questions-where-s-my-payout-going-it-s-going-down
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Sent most of the few SBD I had left to you @girlbeforemirror and resteemed...God bless
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I'm in a similar situation, but not as bad as your wife's. Running is very bad for your spine.
Please eat lots of fresh fruit and vegetables, preferably raw. Eat Broccoli and raw onions daily. Onions are anti inflammatory.
I have crushed vertibae. I have found a clean carbohydrate-free diet, and body weight exercises have helped immensely.
Good luck and God Bless. I hope this helps you.
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Never give up! I am sure the sun is coming for all of you!
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So sorry just a drop to give.
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The theme of my girlfriend is interesting.I wish you a happy day
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you are beautiful no matter what people say!
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