A.S. Face 1511: Cara

Face 1511 Face 1511A Face 1511B

My name is Cara. I am 30 years old and have ankylosing spondylitis. It has changed me. Life will never be the same. For a moment every morning as I wake up I fear moving because I am not sure what hurts yet and how bad it will hurt. I am so tired all the time that most of the things I want to do I miss out on, putting my job before my life. My future is a giant scary question mark. There is no way to know what will happen. The only guarantee is pain. It is the most devastating feeling. I can’t even be sure that I will always have a plave to live. When you can’t be sure that you can work, you can’t be sure you have a future. And with all those overwhelming aspects of AS, from money to meds to disability to pain, the aspects of “normal” life are still there. Wanting to meet someone. Will they think I’m pretty? Will they want to go on another date? Will they kiss me? Will they leave because of my disease? Wanting to make more money. What kind of job do I want to do? Can I work more hours? Is there room for advancement? A retirement plan? Will I get along with my coworkers? Can my body take it? Playing with my nieces. Can I make them smile? How was school? Do you know how smart/amazing/beautiful/talented/loved you are? Can I handle picking you up or will I be in pain for days because I did? Spending time with friends. What activities are there in my area? How far are we willing to travel for other activities? What can we afford? What movies are out? Do my friends know how much they mean to me? What am I gonna wear? Will I have to cancel at the last minute or leave early because my body gives out? We are people that have a disease. We miss all the things that we can’t be a part of. No one would choose this.

Iowa, United States of America

 


6 Responses to “A.S. Face 1511: Cara”

  1. Dear Cara,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Cara,

    Very relatable story. God bless you and all you do.

    Soft Hugs,
    Michele

  3. Anyone would be lucky to have you in their life. You have a heart of solid gold! You’re smart, motivated, funny and gorgeous! Im so happy to have you in my AS family. Love you forever babe! Xxxx

  4. 22years of those questions building in my mind. once passing the invensabilty stages of my 20s and just fighting and fighting through the pain 30 came and reality is sitting in. How long can I work how long can I enjoy life why is my anger growing stronger why can’t anyone understand, should I apply for ss? One day I can walk next day I cant… why am I forgetting everything. Why do I have to think how to breath and move so it will cause the least amount of pain All the time. Dam just missed an appointment why am I forgetting eveyrving.
    Then it hits me it’s hard to live/enjoy life when u have to containtly think through the pain and whare a (invisible mask) I’m finding it harder and harder to make it through each day. It would be great to start groups in city’s so people with AS can meet and lean on each other.
    i too live in iowa.

    • Hi Dustin! Where in Iowa? I have never met another spondy. I have wanted to so badly but travel is difficult and I haven’t gotten the chance yet. You should add me on fb.

  5. Welcome to the group, Cara! You brought up an entire line of questions in my mind also. Will the new med my rheumatologist prescribed work for me? Will I have to use a wheelchair permanently to get around if I can no longer walk? Will my husband want to stay with me when that happens? Will I be comfortable enough to go on the trip we planned in October? Why doesn’t my daughter understand when I cannot do marathon shopping trips with her anymore? Will people at work understand when I have to call in because I’m having trouble walking? I know all of us feel this way at one time or another, but somehow we all push through and try to find our way, one painful step at a time. Stephania

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