A.S. Face 0141: Ashley Latsch

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Greetings all! My name is Ashley Latsch and I currently reside in Muskegon, Michigan. I have been officially diagnosed with Ankylosing spondylitis for nearly four years; however, I have dealt with the pain for a significantly longer period of time. I have switched medications numerous times! I began with the basic anti-inflammatory drugs and have eventually moved on to medications like Enbrel and Humira. With all of this being said, there have been a million things about having Ankylosing Spondylitis that have caused me to become a better person. However, I feel that it is imperative that people try to understand how devastating of a condition AS can be and just how much of an emotional toll it has on a person. Now, here’s the drag; at this point in life I am only a sixteen year old high school student with many, many years ahead of me.

‘Pain is inevitable, Suffering is optional’, right? It is much easier said than done! There are so many things at this young age that I have to think about. Like what I need to be doing to take care of myself and what medication I should take. And, trust me; it is NOT easy to do what is best for you at this age. It killed me to give up most of the sports that I play, because I physically couldn’t do it anymore. & to see the disappointment in my coaches faces, it is devastating. I can’t expect them to understand though. How could I? I mean, it’s not like they can see my illness. It’s all internal at this point. So all they see is someone who claims they are in severe pain.

Being someone who greatly values knowledge, it pains me to say that I feel that in this situation ignorance would actually be bliss. Between the pain of the actual condition (which is beyond comprehension to those who haven’t experienced it) and the medications and their side effects, focusing has become a very large problem of mine. Being that I’m in school, this is not ideal!! Sitting in desks for six hours at a time is nearly debilitating and weighs down any chance at a decent mood that I have. In fact I actually can’t even recall a time when I did not feel even the slightest hint of pain. I do my best to mask it, I usually manage to hide how bad it is, but it’s still quite obvious that something is wrong.

Now, there are many things that kill me… Suffering from As,

• I cannot help my family out as much as I’d like

• I want so badly to take care of people, but I cannot even take care of myself

• I can’t do things with my sister all the time and I know it upsets her. I don’t blame her, she can’t understand

• I can’t perform as I’d like in my sports and everything else.

• I can be a very angry person

• I can’t even do something as simple as brush my hair without my arm and shoulder hurting terribly.

• I can see when people distance themselves from me, because I’m ‘sick’.

• One word, NEEDLES! Ahh

• People think it’s just my spine, Trust ME. It’s not.

• I put all of my problems on the people that I love most.

• Knowing that at the age of 16…my greatest fear is the future.

Now, “what doesn’t kill you makes you stronger”. Right now it may be difficult to see, but dealing with all of this is a part of my life that has led up to where I am today. I wouldn’t trade my experiences for anything. I have so many incredible people in my life that have shown me that I am not alone in this struggle. I have a family that has given me anything that I need in order to succeed. I have a sister, younger than I, who has dealt with me thus far in all of my poor health days. I have a best friend who has stuck with me through the thick and thin, when many would have distanced themselves. I have a basketball coach, who holds my hand for every injection that I get, mind you these are weekly. She had every reason to stay away, yet she chose to stay and take the time to know me and my condition. I love these people more than anything in this world. Having this condition has given be the ability to have relationships with people and value them more than I could have ever even comprehended, had I not had these experiences.

Ankylosing Spondylitis has been the greatest influence in my life. Spreading the word about AS means the world to me. I feel strongly that sometime in the future, working together, things will get better ❤

With much Hope,

Ashley

Ashley Latsch Overcomes Arthritis Through Athletics

Ashley and Kendra

Muskegone, Michigan United States of America


24 Responses to “A.S. Face 0141: Ashley Latsch”

  1. Wonderful story Ashley! Thank you for taking the time to write it. I have a 17 year old son who has alot of pain and problems with his back, and my greatest fear is him having AS too. We will find out soon – but your story helps me and I think your beauty and strength are awesome

    • Thank you soooo much Valerie! It means a lot to hear things like that && I’m sorry about your son :/ That is never fun. Especially being this young and active.. I hope that everything goes well for him! He’s in my thoughts!

  2. Dear Ashley,
    Thank you so much for sharing your story with us. I think you should be the Poster Person For Ankylosing Spondylitis. The strength, courage, wisdom and attitude you show at your age is remarkable. I look forward to seeing the wonderful things you accomplish. KickAS girl!

    Sincerely Cookie

  3. Ashley, you are an amazing young lady. Thanks for sharing.

  4. WOW ASHLEY ,take a bow i was so impressed with your comment i had to reply , 1st my name is Derek Matthews and i am a married man of 41 wit 3 wonderful kids and a wonderful wife Carmela , I had all the early signs of A/S since 15/16 but was never diagnoised till i was 34 , i was not put on embrel until a yr or so later and it has made a big difference to all our lives ,I too am scared shit less of needles even going for bloods in the hosp i break into a sweat ,but strangely i give all my embrel injections to myself without any problems , i find it is so much easier knowing i am the one giving the medication and if i need to stop and take a breather or just wait for a moment until i am ready i can . i am not sure if you are on embrel injection but you can inject into your tummy or thigh or back of your upper arm i find the best place is the thigh as it doesn,t bruise like the tummy does . I hope this is as much help to you as your comment was inspirational to me at your age . also the fact your A/S was spotted at your young age hopefully you will have a much less painful late teens early 20s than i and enjoy them all . from all in Dublin, Ireland…merry xmas

  5. You have a very mature out look and i wish you a wonderful future Ashley, thank you for sharing your story x

  6. Wow Ashley! Just read your story. I wish you didn’t have
    AS especially at such a young age. I am 57 and can barely cope….my age and life experience helps me I am sure yet I look at you and say “I want to be like Ashley when I grow up”. Hang in there and do your best! All the best! Claudia

  7. You are so articulate! So insigtfull. Such beautifull writing certainly can’t be from a 16 year old can it? I think you should be a writer. That is what you should be. We are witnessing tallent. We are witnessing your gift Ashley.

    Turn a negative into a positive. Ten years ago, when my AS really “burst” onto the scene, something inside me made me “get involved” in a cause. It’s hard to explain, but I think I needed to “try” and do something positive out of the blackness. I had to. In an even stranger way- awhile back , when I first got published, I actually thanked God for crippling me. In a strange way I feel a little less like my life was ruined by AS, and a little more like it has been “shaped” by AS. There’s a certain amount of peace that comes with that. Don’t get me wrong- I certainly haven’t overcome the mental distress we all know of – but amidst all the black I see some light.

    Find a cause Ashley, become the expert in it, occupy your mind with learning instead of AS grief, and then share your insights with others by using the gift of writing you obviously have . Get revenge on AS by using it to make the world a better place. Turn a negative into a positive. Maybe the opportunity to do that is the gift we all have been given.

    I had a nurse tell me once ” that Enbrel needle is the size of a culvert.” No truer statement! I couldn’t even feel the “diabetic” needles for metho. Why can’t Enbrel make them smaller! I inject on the top of my thigh-Look for the “dead zones” where it doesn’t hurt as bad-and remember them. I had a doctor tell me once that “when you find them you want to tatoo an “X” there”. No truer statement. Unfortunately, that takes a lot of trial and error- and Enbrel still makes me want to cry every time. I’ve started shooting up on the “side” of my thigh-seems it’s not so sensitive.

    When one door is closed, another opens Ashley. I sense good things will come from you. Thanks for making me feel better by writing down your insights. In our world where no one understands-it’s beautifull to hear someone who does.

  8. Thank you all for your kind words. They mean the world to me. Stay strong ❤

  9. Ashley, you are a very brave person. I know you have your bad days and your worst days. I also know you’re loved deeply by your family. Stay strong and live for today and live for tomorrow because you have a great future waiting for you! Please don’t hesitate to ask for help, that’s why we’re here.

    • Thank you Denise<3 It really means a lot to me. I wouldn't be able to handle it without family like you!

  10. Hey, kiddo, if I may, you’re a great girl, your parents must be very proud and so are the people who stay by you, as they understand how much they benefit too from your shining through the pain-mask and the tears.
    In France we have, within the national AS association, a sub-group that is devoted to the young patients, as it is quite specific indeed to be ill at that age when you should worry about skin outbreaks, the right dosage of I-m-cool and I-am-a-young-woman/man-and-I-acknowledge-my-innate-sexy-self, and the hormones raging. Try and contact your national association, American Spondilitis association or whatever, get involved and suggest to set up that sub-group and run it on a chat group on FB like our Magalie does here in France. She makes herself available through FB and MSN every now and again, a whole evening, for anyone to chat and share.
    The rest of us, I guess, start suffering in the 30s and get diagnosed on average at 37 or.. 70 years old when your spine is folded like a croissant. It’s still bad, as we’re in the hight of activity, career, partner, kids… I was diagnosed very quickly at 33, but I actually envy those who could have a job waiting for them to return to when they’re better, a husband to support them, kids to marvel at and whose love makes you strong enough to go through every day. I used to be hyperactive, hypersocial, so I’m in therapy cause mourning my “before AS” life is very hard, trust me I understand what you say about sports. I’m such a lame loser in agony now, I cannot believe I’m waking up in that achey exhausted body every day : “who are you, you are NOT my body, will you leave me and fetch MY proper enveloppe, you miserable sloth ?!”
    It does affect your mood, your personnality, your behaviour, I find it unbearable, far more so than pain and fatigue. I don’t want AS to “have me”, change who I am on top of what I can do. Keep the faith, “pain is only information”, at some point you’ll get back on top of the game and get to manage your body like a sorry-ally in the life battle, and you’ll be back to your Real Self. You’re right, you’ve grown a lot through AS trial, that’s why it takes a bad time like Hell … A pharmacist friend told me “it will be terrible for the 1st 4 years, and after that you’ll be not only ok, but so much better for knowing what matters in life, who your real friends are etc and enjoying it instead of crazily running in a rat wheelcage like most adults.”
    It’s like being a teenager really, it sucks as a transformation time, it lasts a few years when you feel up and down but it’s for the beautiful butterfly to come out ! We shall be patient. we shall be patient for the butterfly, my dear. You’re a teen, you’re gonna live 2 teenages at the same time, except the small game will just not matter and you’ll become a top-kickass lady !
    Take care Ashley, love and hugs from France
    Old Ana
    34 now,
    but 303 years old inside,
    as I often explain to people who ask

    • Thank you Ana for the kind words. I enjoy the idea of a sub-group. I am glad we have sites like this, even. It’s terribly difficult to deal with something like this on your own. I mean I have people to try to understand and want to help more than anything! buttt, It’s very nice to hear from some people who have the same struggles. Otherwise, if I didn’t have these types of groups, I would be clueless. I’ve received so much advice from people on these. It’s incredible! It’s nice to chat.
      Best wishes ❤ ,
      Young/old Ashley
      17 now,
      But 200 years old inside 😉

  11. Tess Johnson commented on Ashley Latsch: Face 141

    Ashley, I appreciate your story so much! I just discovered this “Faces” page over the weekend, and through both of your stories (this one and the recent one about your amazing coach, Kendra), I was deeply moved and given hope. You see, my nearly-16 y.o. daughter was diagnosed with AS about 2 years ago, and she’s also on Enbrel (along with other meds.) She’s an accomplished athlete in the field of competitive swimming, so like you, she has had to re-evaluate her goals in her favorite sport, due to limitations from pain and fatigue. It seems that her reasons for swimming now have more to do with maintaining mobility than striving for national time standards, yet she still works her tail off to improve her times when her body allows her to. (Wish she had the support of a coach like your Kendra!! Hers is not quite that sensitive, unfortunately, and she struggles with the constant feeling that she is disappointing him.) Anyway, my main message to you is one of gratitude~you took the time to write your story, and that of your coach, and that gesture has touched more people than you realize. In fact, I looked up at the box in the corner of this page and it currently says that there have been 106,514 views of this page, so I’m thinking those would all be people who have been touched by your story. Thanks for shining some light on what it’s like to be a kid with AS. From what I can tell, it’s not the only light you shine~you seem radiant in many ways to me!
    Best and warmest wishes for a bright future~
    Tess
    P.S. I’m going to encourage my daughter to join this page of faces, too!

    This message is under Ashley Latsch: Face 141 if you wish to reply.

    • Tess, I can completely relate to the ‘feeling as though you are letting the coach down’, Luckily my coach is an incredible person, and very understanding. I give a ton of props to your daughter for still sticking with the athletics; it is extremely tough to do! I wish the absolute best for you guys! If she ever wants to chat or anything, I would be extremely happy to! I have a facebook, I’m on most of the groups on facebook. So, just look me up! Ashley Latsch. I would love to chat with her! & Keep working on her to write a faces story! 🙂

      • Wow~Thank you, Ashley! I know she would love that, because she really enjoyed reading your page here, and she also loved the news segment on your story. (You did a great job on that, too, by the way!) Her name is Bethany Johnson, so if you receive a friend request from her, you’ll know who she is! I think you two have a lot in common. You’re both so strong in sports and academics, and such warm, friendly, optimistic people. Anyway, thank you again, Ashley. I’ll be praying for you and I wish you much health and happiness.

  12. Ashley! (: I just read this. And I wanted to say I love you. You inspire me so much. You make me want to do better things. You make me a better person in the world. You’re so strong. Everytime I look at you, I really just want to give you my spine and all the other joints thats are bad. You deserve so much. I hope your spring break is going good. I love you Ash. You’re beautiful. Stay strong. ❤

  13. I’ve been told to come and talk with you by Cookie seeing as we are a close age group, hello. 🙂 x

    • Hey there Hannah!! I emailed you, so hopefully you check that soon. I cant wait to get to know you 🙂

  14. Thank you for sharing your stary. You are a beautiful person inside and out.

  15. Tough times dont build charecter…….it reveals it!!!!#

  16. What a wonderful, inspiring and positive attitude. I admire that very much being a fellow AS patient who on most days feels like I do not have to strength to get through the day.

  17. Thank you Ashley for sharing your story. Heartbreaking to read the impact has had on your body. Your spirit is amazing.

    • Thank you! Life has definitely not left me untested. I’m 22 years old now and just celebrated my two year anniversary of having brain surgery (chiari malformation on top of it all!) But, as my favorite quote goes, “pain is inevitable, suffering is optional”! Spondylitis definitely demands respect and attention, but I’m not letting any of It stop me!

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