Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast}


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Desiree @desireejaykins

What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *


Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha