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.
needs your help!I have never asked for upvotes or resteems, but @girlbeforemirror
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
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.
Thanks @papa-pepper! So much love pouring in!!
Glad to hear it. Keep us posted on all of this.
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. 👍@papa-pepper
I've noticed the same thing...love how much he contributes!
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.@papa-pepper
Well said.
Thank you!!
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!
This is AMAZING! I'm truely stunned at the generosity of the steemit community!
YES yes. Be strong!
I know you are going to be fine, because you are too stubbornly positive to let it be any other way!
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
Chin up :)
I hope it gets better from here, in more than ways we can imagine.
May God Bless You And Make You Healthy And Cure. Ameen
I'm new to SteemIT so my account had only 15 SBD. I've sent 10 SBD as small support, resteemed and upvoted.@girlbeforemirror & @azurejasper
Hope you and your family find a way through this.
Wow. The old widow who could only give a single copper penny actually gave more than anyone else...
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
Following now :)
I remembered this story too.
So generous! Thank you so much.
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
Thank you again. Truly amazing of you, and thanks for the kind words of support - it'll mean so much to Marg!
So sweet of you :)
Upvoted! All help counts! =)
my replies got 25$ in upvotes. Karma is one and only, but there is not much people who appreciate power of life.Thanks to @azurejasper and @kaylinart and @clayboyn
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
Your kindness has touched us greatly.
Thank you
https://steemit.com/life/@girlbeforemirror/sunbeams-and-some-beans-for-murda-ra
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 :)
Wow! Cheers, you're a legend @murda-ra!!
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
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.
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!
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.
So sorry to hear! Hang in there, resteemed and upvoted!I also have 7 SBD in my account, it's heading your way, @azurejasper!
THANK YOU!!
Thank you for your support x
I really admire @girlbeforemirror's positive spirit and that will help carry everyone through. Keep fighting!
Yeah, she's definitely a "glass half full" kinda person. Thanks for the support and kind words.
God bless this girl
Thanks
Thank you
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.
All the best :)
Cheers
Re-steemed.
Best of luck with the treatment, upvoted, followed & sending SBD to @girlbeforemirror.
I'm really overwhelmed right now. So much steemit love! Thank you very very much!
Thank you . I am still absorbing this amazing thing that happened
You are very welcome!! God bless you!!
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!
Lots of healing energy coming your way!
❤️-Stephanie PriceCurious, 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!
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. :)
@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.
Thanks for those beautiful words @onetree. Feeling a little overwhelmed right now, but thanks so much
Stay strong. You're the best husband any woman could have hoped for. Upvoted and resteemed, and I sent you a bit as well.
Don't know about the best haha, but I am trying to do my best.
Thank you very very much for the support!
Resteemed and sent a little gift of the only 0.249 SBD I had left. Prayers to your wife and your family.
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!
Transferred another 2.757 SBD to azurejasper. Wish you both the best.
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.
Cheers! It means a lot to us!
Welcome, and more success
I was reading this with tears rolling down my cheeks.
Incredible woman!
stay strong and blessed.
Thanks so much
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.
Thanks for the comment and support. It means a lot to us
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!!
You're awesome! Thank you so much!
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.
Thank you so much! I'm so grateful and truly humbled.
I hope she gets better. I have a spinal disability myself and I know how terrible it can be. All best.
Thanks so much for that.
my pleasure
my vote isn't worth much, but i've resteemed this for visibility! wishing you all the best.
Thanks, ever little bit of support adds up, and it a lot to us!
I loved your medical explanation :P Upvoted of course and best wishes
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.
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
You get a 100% barely-a-dolphin upvote in support! Best of luck with the treatment. Hopefully more invasive steps are not needed.
Thank you so much. And yeah, hopefully she can get back up on her feet without the crazy surgery.
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!
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.
Thank you! So much support flowing through, it'll mean the world to her!
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.
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.
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
Thanks. I'm sure @girlbeforemirror will be as overwhelmed by the amount of support coming in as I am! Amazing
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! :)
Not many of us are even close to @papa-pepper! hahaha
But thank you, it's great to receive such positive support.
This is very true. Lol. And sure thing. Love to show support for ya.
Quick question, about how much total in bills are you guys looking at? (if you don't mind me asking)
God bless this girl. Upvoted!
Thanks
All the best to her.
Thanks!
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
Thanks for your lovely words of support. It's amazing how generous te steemit tribe can be!
Upvoted and reblogged. Will try to collect some funds to donate.
Thanks for your support!
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!
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
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!
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.
It's always darkest right before dawn. Don't worry, the sun is coming to shine bright, I believe!
My thoughts, prayers and upvotes go with you.
Your support is greatly appreciated!
Doctors are notorious for not believing women when they report pain. I know firsthand. I hope your wife gets better.
Yeah... remember the TV show House? We all need doctors as deranged as that, doctors that bother to look at the whole picture.
Upvoted & Resteemed.. good luck in everything and my prayers.
Thank you very much!
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 :)
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.
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
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!
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.
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.
Your kind words and support mean a lot to us. Thanks so much!
Upvoted and resteemed :-)
Cheers
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.
Thanks!
I hope for all the best for youf wife and family. Upvoted & resteemed.
Get well soon @girlbeforemirror. Upvoted. Resteemed and donated
Thank you so much!
The right words, if there are any, elude me. I will entreat on your behalf.
Love this!! ❤️ Followed/upvoted/resteemed. Very nice post!!
Thanks for your support!