Hi my name is Melissa Ciriacks I am only 16 years old.
I am Jeffrey Pagel’s Cousin.
What to say is the real thing I would like to say. I didn’t choose this nor no one really has I guess.
No one can understand the intense pain I or anyone else feels.
No one can imagine how difficult each day is to live with this.
Sometimes I like to say “I hate this! I hate my body”.
Since i was little i never ran right. So i guess i can say i was born this way but it progressed. I started getting tested when i was 10 with my knees. They dislocate and since i grew so fast bones didn’t grow correct By age 13 they had found the real problem I was diagnosed with AS and Cervical spondylosis (my curved spine and my L5 and L4 fused together and R5 and R3 becoming ‘dissolved” . I have sever discomfort but I found exercising a great way to build muscle and to use that instead of the bone.
I can say i have pain all the time. I can’t sit for hours. Always having to move around. I have ADHD too. Which doesn’t help. I can’t enjoy all the sports i did enjoy. Starting with gymnastics at 7 i found it to difficult due to stretching the back. to basketball but then my knees went. soccer back and knees. softball to everything.
This disease stops me from enjoying. Around 3-4 years ago i decided to join ice-skating ive been in love with this sport since i was little but never could join. It pushes me but i love it. I come home in pain but the fact i get to enjoy something like ice skating like my cousin JJ enjoys playing with his daughter. It can never be replaced. This disease has stopped me. But it has helped me to continue on dreaming plus about 2-3 years ago i had a scuba diving accident making me lose my balance and leaving me hearing impaired. So having already twisted up spine than becoming unbalanced it killed me. But i had support. Some mornings i would wake up and be like i don’t want to do this.
Secretly vomiting from the pain, dizziness, and the master torture. Than dealing with figuring out how to communicate. For the first year of going “deaf” i wasnt able to hear my father and brother or any guy people. Sometimes not being able to hear anyones voice. Dealing with some family difficulties especially with my grandmother struggling to fight brain cancer. It was challenge to make it thru the day.
i guess all I’m trying to say is. Theres no cure but there’s no stopping me nor the other AS people.
How I made it through this far wasnt medication.
It was inspiration.
My dreams of getting married and having kids of my own. Being able to drive even. To my friends cheering me on every step of the way. To my family holding my hand. My oma is an inspiration if she can fight brain cancer for 3 years (even thou she passed away) I think we can fight this. JJ your like my partner through this. Just adding sometimes i would cry many night staying up dealing with pain or taking x-rays and mri’s my mom would have to hold me as i cried.
It’s not easy to deal with it. NEVER will be. but to see it progress it hurts emotionally.
To everyone out there brand new to this. I believe your strong and you’ll have good and bad days but there is no day you’ll regret even if it means crying on your mothers shoulder to fighting with a family member.
Cause your dreams and memories will keep you going.
PS. 1st picture is of I with the greatest family members that help me keep exercising my cousin/sister Darcee and my cousin/brother Owen ( Owen is a marine also in the second picture and he fights for us! (:) 3rd pick is of me (: and the 4th is of my grandma and grandpa they inspire me deeply!
Wisconsin United States Of America