“Hello Muddah, Hello Faddah; here I am at: Camp Grenadah”

I should have called. I should have written. But no. I just left and I’m sorry about that. But, I had a sound reason; really, I did. I’ll try to explain! I, like @ 50% of lupus sufferers, have Antiphospholipid Syndrome (APS). APS is a blood disorder which can cause blood clots. It did.

APS caused some small clots to get lodged in the microcirculation of my ankle and then those clots blocked the flow of blood to the bone. When blood didn’t get to the bone, the bone died because the blood carries oxygen and nutrients and removes debris from the bone. The bone died causing a lot of pain and instability and unreliability of support. Different treatments were tried, but none worked. Oftentimes rest, physical therapy, injections worked-but after a while, they stopped working. So? A month ago I had a total ankle replacement.

That’s where I’ve been. First in the hospital for the surgery and now in rehabilitation getting physical therapy twice a day and occupational therapy daily. There is a restriction:  that I wear a protective boot on my foot all the time, that I elevate my leg and I NOT PUT ANY WEIGHT ON MY FOOT FOR 12 WEEKS


This is the footwear I’ll be sporting until July 16. I go home from rehab this Thursday where my life has been filled with physical therapy and occupational therapy sessions consuming most of my day. This is where it will get interesting as I attempt to follow the things I’ve been taught in transfers from bed to the wheelchair.

Can I do them on my own? My husband will be home to assist in the morning but leaves for work about 2 PM; leaving me alone from 2PM until he returns @ 1 AM. We’d like to hire a caregiver, but they cost money which we don’t have.

Could you donate to the fundraiser we’ve begun; by perhaps forgoing a mocha and donating to our campaign to raise awareness of the orphan disease, osteonecrosis, and assisting me to rent or buy needed medical equipment and ramps and caregivers?



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