A.S. Face 0443: Casa DeLeon

Casa D

Hello my Name is Casa DeLeon, I am 32 and I live in Webster, Texas and have probably been walking around with an A.S. diagnoises for about 3 or 4 years. Its really hard to tell. I mean I know I have it written down somewhere, but my days pretty much flow together and my mind is not as sharp as it use to be.

I hadn’t planned on writing a story because I felt somewhat inadaqaute. I know that I sill cause there are many people out there who are like me. But I have always been over weight since high school when my troubles began…first doctor said it was Britiathis in my hips and if I was to lose the weight that I would be just find. The pain levels  occured during this time were severe I had to use a can to get around school at times and sometimes I was normal. But that is where it stopped at with the diagnose. gave me Mobic to control inflamation. Like I said i was just recently diagnose with A.S. but before that it was Fibromyalga..which that truned out to be only partially correct. But since from the time I have been having pain back in 1995 to now it took them so long to determine what I was dealing with that the Crippling effects where starting to take its toll on me…My family tried everything that they possibly knew how to stop my spine from curving and getting worse but with out a diagnose pain meds were all they could give me.

Currently I am pretty much hunched over when I stand. Its so lonely and depressing I havent found the right supposrt system here but I pray that I will. My days get pretty dark. Even though my family is there for me…I can get pretty down right dark. ANd others just do not get what’s really going on. I have come close to ending it all but something pulls me back from the depths….

I am considered no permenatly disabled….I want to work cause I am such a people person…but finding the medium of what I can and can’t do has been impossible for me anyways.

I am 32 I do not work, married, can’t have children because of the A.S. at least the stage I am in. I am in pain 24/7 even on good days..this is just a breif start to my story because now I am siting at a computer and its starting to hurt. hopefullly I can continue or add some of the poems I have written about  it. I really appreciate this site and the people of Faces of Ankylosing…it means so much. I wish I had a shirt to wear that could explain cause I do get tired of explaining, its like no one believes you. Well thanks again

Texas United States of America

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7 Responses to “A.S. Face 0443: Casa DeLeon”

  1. Casa my daughter just turned 40 and has suffered like you , but she does have a beautiful 5 year old daughter. The good Lord took care of her and CoCo during the pregnecy. CoCo only weighed 4 lbs. and I’m sure God did that so the baby would not crush Heathers lungs. Heather has severe bending to her back and lots of pain but she goes to work daily and takes care of her child, husband, and family. Stay brave young woman; you and my daughter are my heroes of courage. Deepest Respect, Judy

  2. Hi, Casa!!!

    Nice to meet you…

    Maria

  3. Dear Casa,
    Thank you so much for sharing your story with us. I understand about the darkness. My husband is the reason I am still alive today, not because of how much I love him, but because he stopped me. Now I am in a place in my life that I am thankful he did. Remember from this day forward you have 400 plus people who care.
    Sincerely Cookie

  4. Casa, it is us who appreciate YOU. I think you have just found the right support system in FACE’s. Keep reading, every day, and I think you’ll find understanding, caring, and most importantly-HOPE. The common thread with all of us is the “darkness”-and then the HOPE. WE have to have hope. I think you’ll see, that those who have AS the longest-are the ones who have made peace with it the most-and that in itself is HOPE. It’s a journey isn’t it-one I sure haven’t mastered. But together, all of us together helping each other with our stories-I hope we can all make peace with AS. Casa, I think if we percevere in patience, I know both of us will eventually make peace with AS.

    Please share your poems. Over and over again, when I read these FACE’s, I see the beautifull flower of creativity coming out of the darkness of AS. Big time. And to me that IS hope.

  5. Dear Casa,
    you are so beautiful,
    I feel outraged and ashamed for thos miserable doctors and people who dared telling you all your issues were because of your overweight and made you feel bad. It makes me angry to see how incompetent and lazy doctors can be, letting you go so bad and disabled, your vertebrae fusing, instead of making a proper differential diagnostics and paying attention to your clinical symptoms !
    It’s a shame indeed you are disabled now, try and make a fuss about your condition so you get the best care and try and recover as much mobility as possible. You’re worth it !
    Sometimes people and health workers think I’m a pain in the backside getting so much information and insisting to get various therapies and carers, but is it normal or any good for me and society if you are stuck outside of life, work, couples, families, friends, in your thirties, when you are eager to be part of the community and contribute !? No, I see physiotherapists 4 times a week at the moment, Humira failed and I’m waiting to see specialist again to get another biotherapy, I don’t want to my vertebrae to fuse, I’d do anything to prevent this. I’m disabled enough, as you mention, being exhausted all the time, in pain constantly, working with a can etc does isolate you already.
    Anyway, keep the faith, I have faith in my phoenix self being reborn from its ashes, again. I don’t know when yet (it’s been 2 years now) but I know that at some point the inflammatory flare will calm down, and I will be able to control the illness with treatment, so I can start to live again : sleep and eat like any living thing, have days active like any person, be back to my bubbly active self, surrounded with my friends, full of projects, and maybe in love, who knows. Do keep the faith, it WILL get better ! Work FOR your future better life, not AGAINST the illness and the bad phase now, see the positive in the horizon, don’t look down or back.
    You ARE A GORGEOUS young woman, emphasize your good points, highlight your clivage with open necks and empire-cut top/dresses, your luminous chocolatey skin with bright colors, ditch all black/grey/white/brown/dark colours, always dress and wear make up, colours, jewelleries and head jewels. Surround and cover yourself with beauty and life, flowers, plants, art, colours, music, it does impact your quality of life and mood.
    Lots of love from France,
    Ana

  6. Thank you guys so much for the encouraging words and motivation.

  7. Thank you for sharing your story. You are a lovely lady.

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