Yup that’s what my own family member said to me the other day. I’ll be 60 in January and my own family members don’t get it. I’ve told them numerous times to look up Cookies amazing site , that’s connecting people from all over the world together, read their stories.
Obviously they haven’t. I can’t show you how bent I am. Or that my night stand looks like a crash cart. Or every single step I take I need a cane to walk bc unrelated bone cancer got ahold of me. I have a 2 inch shoe lift on my right shoe bc the bone cancer actually ate away my hip joint. A clip holds it together with my femur bone.
All it took was a damn X-ray to confirm the cancer. But I got passed around, dr to dr. Finally one had brains enough to take a simple X-ray. If caught earlier I would only have a slight limp. And I wouldn’t have to pay over $300.00 for the ONE pair of shoes I have. Can’t afford another pair and insurance doesn’t cover it.
Or that I got a new knee less than a year ago.
All these years going to different doctors and NONE of them believing me.
All those symptoms boiled down to Juvenile , rheumatoid, osteoporosis , AS/UC and bone cancer. And what ever else I can’t think of. Hospitalized numerous times for a variety of reasons not even listed.
This is what I was told by ALL those doctors years ago….
“Your too young to have pain.
You don’t look sick.
It must be stress.
Oh honey we all get backaches
You need to see a psychiatrist.
Must be your hormones.
Are you seeking narcotics ?”

I could add a bunch more but even as I’m texting this , I’m getting ticked off.
I can trace my AS back to when I was 4 years old. Drs at that time said I had juvenile arthritis.
I’ve lost friendships. Love. Jobs. I can’t support myself. In and out of hospitals for years means I don’t qualify for disability. Life looks pretty damn bleak the older I get.
And yes that IS my rbf in my picture (resting bitch face).
At least I have ALL of you and I’m sorry for being a debbie downer bc I look for inspiration in all YOUR stories.
Most scary for me is when AS slams me hard. I can’t walk and it’s affected my aorta. I feel like a ticking depressed time bomb.
A person can take only sooo much of daily chronic pain.
No today’s not a bad day, it’s my usual everyday, when things are going well.
Listening to rock and roll is my ONLY medicine. Allergic to all the medicine “that’s supposed to help me “.
I tried really hard to save up and see Dan Reynolds in MN when he had a concert there. How the hell would I be able to stand for even 5 minutes ?
Or see thru the thousands of people? Never got to see him or any other musical artist.
Music heals the soul. That’s all I have.
I truly feel it will be a blessing when I graduate to heaven.

Wisconsin, United States of America

One Response to “Audie”

  1. Dear Audie,
    Thank you so much for sharing your story with us. I wasn’t sure this day would come and am so grateful to place you here.
    Sincerely Cookie

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