A.S. Face 0667: Kasey Francis

My name is Kasey Francis!  I’m 19 years old and I’m an aspiring DJ and music producer! I was diagnosed with Ankylosing Sponglyitis last week after having chronic neck and back pain and stiffness for the past 5 years after what we thought was from a skateboarding incident. The trainer who looked me over after the spill said that my neck had been spasming and that was the cause of my current discomfort but that it should subside and he sent me back to camp. I was at a week long skateboard instruction camp, and being 14 years old, I figured, nothing was permanent especially the little aches and pains from faling. But unfortunately.. over the next five years, the pain and stiffness slowly started to take over my back. I tried switching backpacks for school, thinking my backpack was just too heavy. I got a new bed, hoping that would help and it took a very long time and many misunderstandings but finally at the age of 19, I have been diagnosed. After getting my high school diploma last year, I haven’t been able to start college because of the pain and discomfort. Fatigue in the mornings and loss of appetite has caused me to drop from 155 lbs to about 125, but that apparently doesn’t seem to be an issue according to my Rhematologist, or at least not yet. On top of AS, I am almost completely deaf in my right ear and have been the majority of my life. I’ve had numerous ear tubes put into place in hopes that it would help my ear canal stay structurally sound but now after multiple failures, I’m now looking at a long awaited ear drum reconstructive surgery, in a last attempt to fix the problem. Because of this problem, for the the past couple years, I personally believed that my ear had to have something to do with my pain and stiffness because so much of it was based in my neck areas, and my ear seemed like it was infected, constantly draining out blood and wax every single morning. I had doubted myself, thinking maybe I was just supposed to go through all of this, and I was just being a complainer. So many different scenarios went into my mind, most of them selling myself and the misery that I had gone through short because I just couldn’t believe that it was really happening to me, along with numerous thoughts that my dreams would be prevented because of my condition but I still DJ and make music constantly. It is what helps me get through this terrible disease! Unfortunately, before I can start Humira injections, I have to get the tympanoplasty (ear drum surgery) and I’m hoping that will allow me to hear better! Then soon after my hoping is that Humira will help with this AS. My life slowly has de-evolved from an athletic, go lucky, positive kid to someone who has maybe two people who are close and I feel as if I’m rotting away. It’s difficult for me to turn my head, or dry my hair, or stay in one position too long and any bit of relief would be extraordinary!

I’m very very glad that I came across the Faces of AS site because already I have read peoples stories and comments on the Facebook page and I’ve cried. It’s an amazing feeling knowing that I’m not alone and I never knew how many other people felt the same way I do, and are in the same boat I am and that to me is something I will never forget and I will always cherish. I hope to be able to contribute for the rest of my life as long as others have to suffer the way we do, no one should feel alone the way I have and thank you so much for all that you do to ensure that we don’t have to.

California United States of America

9 Responses to “A.S. Face 0667: Kasey Francis”

  1. Since you cant start your Humira yet, I would hope your Rheumy is giving you something for pain relief. Good Luck

  2. Yo Bro i am 19 too…same like u!!! hug

  3. I wish you success with the surgery and hope Humira can help lift you to see possibilities like never before. Higher education can help in finding that path. You will find that we need you very, very much to make positive changes in our world of AS.

  4. Welcome Kasey! ” It’s an amazing feeling knowing I’m not alone.” If there is one common thread that links us all together, then that sentence is a “rope.” It is a great releif knowing we’re not alone…about as great a releif as being diagnosed-IKR (isn’t that what you young folks say now a days…see, I can be groovy too!). What I find optimistic is you were diagnosed last week, and the rhuemy wants to put you on Humira now. The rhuemys are skipping over all the old “horrible side effect” drugs, and goin right to the big guns…which shows the efficacy(love that word) of them. (of course, they have their side effects to). I’d say you were diagnosed at the right time in history Kasey…these “TNF’s” were ground breaking…and I gots a feeling there’s gonna be a lot more breaking ground in the near future.
    I’m no psychologist (but I did stay at a Holiday in Express last night), but I think the best way, or the first way, to deal with AS is Acceptance. Acceptance can defeat frustration…and there’s gonna be a lot of frustration that you might be able to do what a young man your age should be doing. I know I was pretty PO’d that the hiking, biking, and skiing I used to do was causing me pain. Accept it, and don’t beat yourself up if the fatigue drags you down. And if the people around you “don’t get it”, then screw em, cause we get it. And hey, with the Humira, you might just get to keep doing those “athletic” things you used to do.
    The second best way I can think of dealing with AS, is to “use” it to motivate yourself into doing something you’ve always wanted to do. When my AS “blew up” 10 years ago, I had a nervous breakdown (that’s what my freinds call it), but somewhere in all that darkness, a yearning developed to “get involved” with a cause I cared about. I’d always wanted to “write,” and I started writing. Turn the negative into the positive Kasey. There’s always a way out of this. I’d say your DJ’ing is ready made to be your cause. You’re a good man Kasey, and AS might just make you a better man. I beleive.

  5. Hey Kasey 🙂 I’m also a young AS sufferer, I’m 22, and was diagnosed this year too (AS Face 0067) . Just wanted to say that I know how you feel. I too have two conditions (AS and epilepsy) and I know it’s hard, but believe me, once you are on the medication, things do get better. I am back playing action netball, running races and studying a physical course (occupational therapy) working with people you have medical problems like my own and I’m so happy because I’m helping others. I agree with Derek, let the music be your inspiration, i think it will help you get through all this! But for now it’s alright to be sad, frustrated, angry etc, i think most of us went through that. Don’t let AS stop you from reaching your dreams because it doesn’t have too. If you need someone to chat to about anything, i know i’m half way around the world from you, but add me on facebook, my full name is Ashley Dearling. Good luck Kasey!

  6. Dear Kasey,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  7. Hi Kasey. I was very touched & inspired by your A.S. Story. Thank you so much for sharing it with all of us. We all can relate & we do understand how you feel. I’m so sorry that you have had to live with the pain since you were 14 years old. It is very good that you have a diagnosis, & hopefully, after your ear operation, you can start on Humira injections, which have helped so many people with A.S. You never have to feel alone ever again, Karsey. There are 2.7 million Americans with A.S. & many millions more around the world. I have A.S. & PsA -Psoriatic Arthritis, & fibro, & it’s not easy, but having friends with A.S. & other autoimmune diseases has helped me so much. Don’t ever give up on your dream of being a professional DJ. Don’t lose hope, & don’t let A.S. ever stop you. Welcome to the Faces of A.S. Family, Kasey. I hope you find comfort, kind & supportive people, & many new friends here. I think your story will inspire many young adults, that visit this website. It has already inspired me. Thank you, Kasey!!! 🙂 Stay strong & stand tall! -Lisa # 535

  8. Hey Kasey! Sorry you have AS, but glad to meet you. I have AS too; in fact, I was diagnosed well before you were born. Anyway, don’t give up on your dreams! Once you’ve had surgery and are able to get onto Humira or one of the other biologics, you will feel like a human again. Good luck with your DJ work and music production–it sounds like a fun and exciting way of life. Be good to yourself, and try to be patient with your limitations. Don’t forget to EAT…..125 lbs is a bit sparce.

    One of the greatest feelings is to know that you aren’t going through this alone. There are so many of us; thank goodness for social networking which allows all of us a chance to “meet”. I have had the opportunity to chat with people from all over the world, and that opens up your life with AS a great deal. Keep a positive attitude and stretch daily, even when you don’t feel well; it will serve you well over the years. Welcome to the group! Ty 🙂

  9. Wow.. thank you all so very very much
    I’m actually in tears right now
    I hadn’t checked back on this because I wasn’t expecting any responses and I’ve had downtime because of my ear surgery so I decided to check out some Faces and saw all of this!!!

    A little update on my Face!
    Cookie, I’m going to try to remember to email you so you can actually update this but I had my surgery a week ago, and my second post op appointment tomorrow to change the bandages on my ear
    It will be about a month or so until I’m fully healed and my hearing will come back, I’m actually way more deaf than I was before currently
    My insurance is trying to hike up my prices through the roof because of this + Humira so we’ll see how that goes
    Haven’t talked to my rheumys in a while, and I’m pretty sure they were supposed to up my Cymbalta dose weeks ago, but I figure if it was a big deal, they’d give me a call though

    The only problem I’ve been having is that the past 4 days, my AS has been kicking my butt. I’ve been okay on fatigue for the most part besides sporadic fatigue spouts, though my sleeping schedule is totally off…
    But the real problem is I have extremely painful/sore chest/shoulders
    But not like AS, achey, cracky stiff kind of pain as much as sharp, dagger like pain, everytime I move my arm, turn my head, move, breathe, or basically do anything that isn’t stay totally put, like right now as much.

    But luckily they gave me some 5-325mg Vicodin for my ear, and it’s actually been helping fairly well for both
    I just wish that this world wasn’t terrible to the point and I could ask for pain killers from my doctors without looking like a drug seeker.. Maybe someday!

    When I see how supportive you all are of my music endeavors, it brings me an amount of joy that I cannot even begin to express. It’s more than a goal, or a dream or an aspiration for me, it’s a lifeline. It’s an escape from this treacherous beast, and I love it more than anything.

    For those of you who may be interested,
    This is my soundcloud: http://soundcloud.com/kaseyfrancis
    There, I post DJ mixes and I’m currently working on an EP release with my cousin, along with my own remix from an unfortunately deceived old school Pop Legend.
    All of which will be FREE ❤
    And I will tell you why…

    My alias for music/DJing is "Konflict".
    The name is symbolic to me in the form of something I think we all can relate to, the terrible, pointless civil war fought by our immune systems and our bodies that rages on every single day. The constant battle in our heads with negativity that is presented to us in such a unique way.

    For me, I hope, through "Konflict", I may find peace.
    It may be a bit corny but dreaming about music got me through more than anything.

    Due to this surgery, I've been really late on posting new material (I'm almost done regardless ;)) and if you have any interests in electronic dance music, you may enjoy my old DJ mix and some of my new ones!

    Also feel free to add me on Facebook!
    I spend about 90% of my time inside of a music program but I do love to chat!

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