My Life Saving One Thousand Units. Not at all what I expected.
Usually Thursday is hydrotherapy rehab day for me.
Today instead of hitting the pool with the grannies I attended another appointment. The first of what was to be weekly IV infusions.
Approximately 90% of our bodies are comprised of connective tissue.
People with Ehlers Danlos Syndrome can have a diverse array of problems. As the condition involves a fault in the connective tissue of the body.
Like so many people with my type of EDS I have dysautonomia.
This causes orthostatic intolerance.
Which basically means an intolerance of being upright.
Simply standing up causes my pulse to go from 75 beats per minute to 160.
The impact of this has prevented me from being involved in life. I just lie around at home, tiring very easily and spiking pain if I am active even doing basic things.
A simple treatment of a salt water infusion once a week however can give people a dimension of their lives back.
This treatment is very common in So many countries, but Australian doctors and health providers don't get it and won't look at their peer, evidence based research.
But today was the day!
The impossible was happening. I was off to the infusion centre. Hooray!
I arrived with a book, charged device and snacks in hand, ready to do this. I messaged my online patient support group (I actually did), with excitement!
But the technician said NO!
They only do saline infusions if you put medication with it. 😕 So... If I had a prescription for ANYTHING they would have hooked me up.
I left feeling so devastated.
Defeated again by the stupidity of the system.
I ugly cried all the way home.
As I shuffled home and scrolled on steemit .
I noticed two things at that moment.
1. I had clocked 1000 followers 🎉
2. I was across the road from a store I had mentioned to @azizbd.
Woman's trading circle.
So disregarding my blotchy face and wearing it with pride I headed inside this gorgeous store.
I had a beautiful chat with some wonderful woman.
We checked out @azizbd's school and woman's empowerment posts together.
They are looking forward to hearing from him, and said they would be happy to assist him in networking and sharing their knowledge.
I may not have received the 1000 units of life force that I imagined I was getting.
But yet again steemit has helped me through the day.
Thank you 1000 steemians. You have given me purpose in the midst of some difficult times.
PS
I live in an incredibly inflated city. Sydney's bubble didn't burst when everyone else's did.
For this reason I have never been able to consider the small amount of steem that trickles my way, as income.
Yesterday however that 100SBD when viewed from a SHAREE SISTERHOOD PERSPECTIVE !
WAS VERY EXCITING!
That spike in SBD meant something. Rather than being less than half way to my goal of a new Sharee for every momma for new year.
I HAD MADE IT!
I experienced again the power of steemit.
To really do something good.
Making that transfer felt great.
With great excitement I messaged @azizbd.
Thank you steemit for the infusion of gratitude. It definitely has the power to heal and transform.
I know the feeling of the desire to get the treatment that you want and then you can't get it.
Maybe someday too I will have the things that i hoped for for my health.
I wish you well Marg @girlbeforemirror
Your condition is very hard, I too can't tolerate being upright for so long as my chest feels like it will crack.
I feel frustrated with myself because I wish I could do more. I am hoping that someone will step forward to coordinate an approach to your needs. Steemit definitely has the collective potential and talent. Something will come together soon I hope.
I like reading your posts :)
BIG love coming your way from the other side of the world!
Its not easy be grateful when things are not the way you want, it take the grace of God to do so thats why we need to consciously train to, as to empower our spirit man when the flesh is weak.
@girlbeforemirror, continue in your attitude and build your faith more in God The Great Physician, am sure He will show up and intervene in your health challenge. Be bless and stay bless.
You are an ardent inspiration to me as well, and well enjoy your Lamdmark, such an astonishing steemian as you, the sky aint your limit, keep steeming
very interesting your post
thats a great creation my friend..this really good video tips our life..thanks for sharing..best of luck..
You have an amazing positive attitude!!
God bless you and your family!!
You are a #gratefulvibes challenge winner, check your wallet!!
I didn't know that it was a contest with monetary rewards 😂. I thought it was a happy movement just for the vibes.
Thanks 😊 I am honoured.
But I must stress that I do my best to reframe things into positivity. I was a hideous angry creature yesterday. That is why I am grateful for being reminded of how lucky I am.
I was freed from my internal lamenting when I thought of the mums and kids in syhlet.
Hey, yesterday when I told of my "grateful for life" story, I was rather upset at the woman who almost killed me. I won't go into the rant I had. Oh yeah.
The movement is for #gratefulvibes. But I also donate 50% of the rewards to an orphanage in Honduras. The other 50% goes back to participants. Some in post boosts, some in awards for excellent posts. It's win-win!!
Thank you so much for joining the #gratefulvibes challenge!! win-win!!
This post is "in the spotlight" on my daily #gratefulvibes challenge post!!
Your message is an inspiration!!
thanks for your loving and big heart Papa Bear.
@girlbeforemirror is a warrior like @cryptopie
very inspiring, It must be really hard @girlbeforemirror but keep going.
Stay strong and blessed.
lots of hugs xoxo
Amen and Amen!!
I am sending hugs from this side of the world to you! Congratulations on your milestone. I thank you for sharing ad explaining your illness with us. It is so disheartening when the powers that be deem treatment unnecessary or too expensive. You are such an inspiration to others. keep your positive out look on life. It will serve you well.
Its not fun being in pain every day but we endure and hopefully things get a bit better. Thankfully, God gives us the strength to get through each day, some with a bit more aplomb than others, but we get through them all. God bless and give you strength. :D