I rely on 2 forms of life support to live. Everyday I’m attached to 2 machines, one to keep my heart going via a central line and the other to feed me nutrients through a feeding tube. I was born with a genetic progressive disease vascular Ehlers Danlos (vEDS), a heart defect and heart disease, and I developed a severe form of Hyperadrenergic POTS, sjogren’s, pancreatic failure, osteoarthritis, mast cell activation, a spinal cord injury and multiple illnesses that are caused by EDS, sjogren’s and MCAS. I’ve been homebound and often bedbound for 12 years, in palliative care for 5. God has kept me going through it all!
So grateful for each day I get! 😊
My story of surviving many odds against me brings others hope and encouragement. I aim to share joy, positivity, kindness and LOVE! ♡
Spreading awareness of rare diseases and disabilities helps others have a glimpse of what many others like myself face everyday of our lives.
♡ INSTAGRAM: www.instagram.com/lovehard_fighthard ♡