This is Cindy Belz story. She lives with EDS, gastroparesis, dysautonomia, Degenerative disc disease, chairi, spinal tumour, synriomygelia and synriobebelia. Please be respectful of her and her story told in her own words.
Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
Cindy Belz. 43. EDS, gastroparesis, dysautonomia, degenerative disc disease, chairi, spinal tumour, synriomygelia, and synriobebelia.
Ehlers Danlos Syndrome explained http://ehlers-danlos.com/eds-types/
Gastroparesis comorbid of EDS http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971
Dysautonomia explained http://www.dysautonomiainternational.org/page.php?ID=34
Degenerative disc disease http://www.arthritis.org/about-arthritis/types/degenerative-disc-disease/
What is a chairi find out here https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet
Spinal tumour causes and symptoms http://www.mayoclinic.org/diseases-conditions/spinal-cord-tumor/symptoms-causes/dxc-20117316
What is synriomygelia http://www.mayoclinic.org/diseases-conditions/syringomyelia/home/ovc-20267736
When did life change for you?
07/2003 That was not diagnoses date that was spinal surgery date that went wrong.
Diagnosed finally on 2/12/2014
What was life like for you before diagnosis?
Hell because even though I had no reason yet, I have suffered since birth. But my hell date I was in pain for 20 years prior not to Kenton the internal issues
How has your diagnosis changed your life?
It gave me a name to what was destroying my spine as well as why my body had tried to kill me so much as a child and why I lived in hospitals.
Please describe the best you can a day in the life of you?
It’s not much. I get up and I am sick from GP for a few hours. Then I take my meds and I lay down on my heating pad. That’s where is stays. I don’t dare eat or the GP attacks come right back! So I lay here until I try a liquid dinner at 8. Then I lay here. If I try to clean or do laundry etc then I pay big time. I do still try from time to time but some days my body can’t. I could not imagine how much hell I would be in if I moved !
What was/is the most challenging thing you have faced because of your diagnosis?
A lot. I lost my independence I lost my job. My income. My self worth. I lost my career. I lost what I felt as accomplished now that’s all gone. I was proud of myself. Now I am mad at myself !
Do you find that you can keep up with others? Oh yes. I lost all my friends but a few.
What would you tell others living with your diagnosis? Day by day and take everyday as your last. Tell people you love them while you can.
What would you like to tell others that don’t live with a similar diagnosis?
Just understand. Be compassionate. The pain I live with is hell. Just understand when we have to cancel. Don’t hold things against us and the big thing please don’t stop trying to invite and include us be cause one day we can say yes and that means the world. Also come to the sick person to hang out.
What have you learnt on your journey?
Not all people get it and never will so stop trying to make them
Is there anything you would like to add about your journey?
It’s not easy so bear with me.
Thank you for sharing your story with me and with the world. You are a brace lady. I agree that others do need to be compassionate and understanding of what we go through.