Monday, May 29, 2023

Where Does It Hurt?

Many people who suffer from not only ankylosing spondylitis, but also other autoimmune disorders are familiar with these four words. The problem with the question is that there is no simple answer. For me, my symptoms can change daily. For example, yesterday I couldn’t turn my neck, but today my feet hurt so bad I can barely stand on them for longer than 5 minutes at a time without cringing in tears, and tomorrow I may be just fine. So when I get asked from the doctor what is hurting I have to ask a question right back…are you asking for today only?

Here is the topper: The list doesn’t end with physical ailments. When you are experiencing a flare, haven’t slept in days, smile through pain, and had to adjust your day due to something you cannot control, your emotions can hurt. The frustration you feel is at an erupting peak and helplessness sets in. Anger jumps on board and then you are begging for a few hours of shut eye. You hope your body can re-coop so that whatever physical hurt you have will help your emotional hurt mend. I am still learning how to accept the fact that I can’t plan what will happen tomorrow or even in a few hours. I want so badly to control the pain that when I am at the point of complete exhaustion, instead of breaking down in tears my temper can let loose. I then get frustrated because I know why I am feeling this way, but I just can’t seem to control it. I get upset with myself, my disease, and this loss of control in my life.

So what do I do? Do I curl up in a ball and give up? NO WAY! I fight like a girl! I know that pain is now a part of me, but it is NOT all of me. I put on my sparkly shoes and step out into  the world, pain and all, and face it with strength I never knew I had. I may not be 100% but I am someone. I will walk this rocky path knowing that there is only one reason I was meant to face these hurdles in life. I was meant to become stronger because of them. It may hurt everywhere in my body, but I know if I need to stop once in a while to rest that it is okay and should be acceptable. It is all part of the experience. Every experience has good and bad,and no matter how unfair it seems I will be up for the challenge. So if you ask me where it hurts…I will say my list is long, but it won’t stop me from facing them with strength, courage and my whole heart.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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  1. Jenna Visscher

    I love this blog post. You are so right – it depends on the day and it challenges our emotional well being day after day after day but – We won’t give in! We’ll just pick ourselves up and charge ahead.


    • Amanda

      Thanks Jenna! You know your support means the world to me!! xoxo

  2. Reatha

    Yep thats the question I hate most from doctors. Nice post.

  3. Aimee

    I have lived with RA since I was 16 & 1/2. I will be 54 in just a few weeks. Somedays I want to just smack someone and be done with it. I go from day to day, and minute by minute. I moved from a southern state to a northern state to be near my grandchildren, and there ARE days I question my sanity in moving. BUT, I won’t give in, give up or quit. I just keep keeping on because I FIGHT LIKE A GIRL. God Bless us all and GO US!

    • Amanda

      Aimee-You’re strength is very inspiring. I wish you a pain-free tomorrow!

  4. Tara Smith

    Where does it hurt? It hurts everywhere and every aspect of my life. It hurts not being able to ride on the back of my fiances motorcycle feeling the wind in my face. It hurts not being able to go for long drives in the car exploring the world around me. It hurts not being able to dance the way I used to feeling the rhythm in my soul. It hurts knowing this autoimmune disorder has prevented me from having children. The physical pain is nothing compared to the hurt inside of my heart. I am hopeful for I am still on this earth and can enjoy the sun on my face. I am grateful for still being able to garden and enjoying the sights, smells and sounds of nature. I am grateful for being able to enjoy a day at the beach feeling the mist of the ocean and the feel of its great power of healing. I am thankful for a great partner in life who accepts me for me. I may be hurting but I am hopeful for one day there will be a life without pain for all who suffer from it every day!!!!

    • Amanda

      Tara-Your words are written so beautifully. I think so many of us with chronic illnesses hold on to hope very tightly. I think many of us have also learned, as you have, how to be grateful for what we do have. Many say attitude is everything. Although our illnesses can be extremely frustrating and discouraging focusing on the good can help us get through anything. Wishing you a pain-free tomorrow!

  5. Lindy

    This made me tear up. We are AS-Kickin’ WARRIORS! Spondys are truly some of the most hardcore people on the planet. Go, girl!!! 🙂

    • Amanda

      I love that…AS-Kickin” Warriors!!

  6. VICKI

    I too live with AS. It hurts everyday and not always the same area. I started on all kinds of meds and settled for a few months on Enbrel. Unfortunately AS wasnt the only thing causing pain. I later had very painful migraines. I stopped taking the Enbrel thinking that the migraines were a side affect. Nope I have Chiari Malformation of the brain. So now I have focused ion trying to control the migraines without surgery so I can also take care of the pain from the AS. So far I was getting the headaches under control but with the AS flare ups it is getting more stressful and difficult to the point of wanting to give up. But, I have 3 wonderful children I need to be there for and be a good role model for them. I can’t let them see me give up so I FIGHT LIKE A GIRL!!! EVERYDAY I fight and am in ALOT of pain and EVERYDAY I fight to get out of bed and take my meds and go to work to help support my family. So when the doctor asks me where it hurts I laugh and ask her today, yestarday or tomorrow? Everyday is different and everyday seems worse. Not only physically but emotionally and mentally as well. I am so glad to have found this website from a friend to read your stories and not feel so alone anymore.

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