Wednesday, December 11, 2019
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Winding Up AS

Have you ever watched a child play with a jack-in-the-box? You see them slowly wind the handle. As the music plays they begin to giggle in anticipation of the clown that is about to appear, and then suddenly…POP! The child has a look of surprise as if they didn’t know it was coming. They wind again, and the same result happens, shock and surprise. I believe living with a chronic disease is a similar constant surprise. I have learned once you have one autoimmune disorder, it is not uncommon to get a second, third or even tenth! Each time I step into the Rheumatologist office I am confident that all is going to work out and be okay, then…POP! I have a look of shock and surprise. There is a new medical hurdle to be jumped.

It seems to be a never ending cycle. The chaos becomes almost comforting. What about when the box doesn’t open? You get to that moment of silence, which in my world becomes a very uneasy feeling. I have gotten so used to that “pop” feeling that as odd as it sounds, the calm becomes the scary. But is that any way to really live? You want desperately to be healed, but know this is no time for desperation. You must move forward and keep positive. So how do we keep that positive head on our shoulders when it seems our health is always dwindling? My answer…very carefully. I have learned that I must approach each day as a new one. I cannot bring the pain from yesterday to today. If it comes on its own so be it, but I will not be its crutch. I have learned the more stressed out I get about something the worse and faster my next flare will come. I will strive for the days when I can head to the gym and run errands and still be able to get some restful sleep that night. I cannot say I will ever get used to the news when it pops out, but I will be brave enough to face it each time.

Below is a list of some of my surprises. I have only included a few of the bigger ones. What is one, or some, of yours? How do you deal with the shock of the pop?

  • Born without the main vein to my heart (Inferior Vena Cava)
  • Born without hip sockets
  • Born with slight spina bifeda
  • Malrotation of the bowel at age 5
  • Kidney removal at age 11
  • Epilepsy at age 18
  • Edometriosis at age 26, 27, 28, 29, 30 – hysterectomy to solve the ongoing problem at 30
  • Ankylosing Spondylitis at age 31

 

 

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

 

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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5 comments

  1. Wow you have had so much to deal with in your life and yet still maintain a positive attitude. Inspiring. Along with AS, I have a non specific heart prib, heart murmur, RA and a crooked back. Like you, I’m determined to live each day the very best I can

  2. Amanda,

    You had me riveted. The description is so spot on. Each time AS pops into our world we still are surprised even though everything in us knows that it will come again and again.

    To me, this is what raising awareness is about – coming up with ways to describe a life with AS is very difficult and I want to thank you for this article.

    You are brave and strong and beautiful. Keep fighting Girl!

    Love, Jenna

  3. Thanks so much Jenna! You know your words & friendship mean the world to me! Love ya!

  4. Sounds like you have a lengthy list yourself. Thank you for your kind words. I really do believe that the only way to approach life, especially one with hurdles like health issues, is to try hard to stay positive. We may not be able to choose what hurdles will be set up for us, but we sure can choose how to jump over them. Wishing you a pain-free day

  5. Wow Jenna, you sure do have a lengthly list. Thank You so much for writing this and giving me a litle more insight to stay positive. I’ve been diagnosed with AS, Reynolds, Psoratic Arthritis and now a muscle autoimmune disease and two bulging disks with 4 herniated discs…. I’m 28 years old and feel like I’m 80. I’ve been in the darkness latley with all the pain but I still push forward. Your words are comforting and maybe moving forward with a positive attitude will help. Thank You Again!

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