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Coffee cup on counter

Emotional Breaking Points with Ankylosing Spondylitis

By | Experience, Featured | 8 Comments

When it comes to Ankylosing Spondylitis, and we hear the word “broken”, we usually assume it must mean a bone of some sort. But, in the case of this post, I’m focusing on emotions. This isn’t a disease we volunteered for and the challenges test our limits daily. I’m honorably a mother, wife, sister, aunt, and friend and to constantly battle to pretend is exhausting. I find myself wrestling with my words as they want to leave my lips as to catch them so my loved ones won’t continue to hear my broken record or complaining. Sadly, I’ve realized this has become their mindset or even worse that I’m exaggerating, but as you know there is no way to exaggerate this pain. It is real, if anything we underplay the pain for their sake. Although, I try to limit my health hurdles talk, I find myself venting to my loved ones. When something, unfortunately, consumes so many of your days between doctors, flares, insomnia, infusions, medicines, and so on, you pretty much live a life that makes this become one of your unintentional topics. So I continue on my path of pretending to be well.

A few weeks ago, I got to that point. The point so many of us hit many times in our journey. I broke. I shattered really. I was going about my normal routine of playing pretend and something triggered me to break. It was something that an onlooker would think was so silly, but for me it was that last and final thing that I just couldn’t pretend to smile through for one more second. I’m embarrassed to share it with you, but at the same time I know as fellow AS’ers it is vital that you know you’re not alone and hopefully you can empathize with me so I must tell you the simple silly final straw that sent my week into a tailspin. Ready?

A cup was left on our kitchen counter.

Can you believe it!? I mean how dare the culprit in my family drink something and not clean it straight away! Normally, I would’ve just put it in the dishwasher. This time, I broke into a million pieces. I went from there and just shut down to everything around me. I know it had nothing really to do with the cup, but I needed something to focus on, and I found it in the cup.

When I wear down like that I go through an array of emotions of what I like to compare to a visit to the zoo. I start at the lions. I roar in nice and loud, make my presence known. Really what that is in our AS world is I can’t pretend I’m not hurting for one more minute. I need to release all my hurt somehow. Next, onto the bears. I say this because they hibernate. My bed becomes my friend. I don’t want to be unkind with any frustrating words or be bothersome to my family since I’m not feeling well. Next, onto the aquarium. Here you can choose whichever aquatic animal your imagination desires. I relax in the bath to get the warmth on my hips and back for a bit. I have music on that relaxes me. Finally, as I begin to feel stronger I’ll move to the giraffes and go for a walk or to my Pure Barre class to start stretching out again. Trying to stay long and flexible is so important to our fusing bodies. It works for me, not sure why or how, but it does. If you haven’t found anything yet, feel free to try my zoo. If anything, it’s entertaining and keeps your mind busy.

I think as AS Warriors we can control so little of what is happening in our own bodies and it becomes extremely overwhelming. We look for any possible control we can have in our life. For me it was a cup, for you it may be grocery shopping or mowing the lawn, but we all have something that will make us break. Mine are different each time. I always think I’ll accept that I will not be able to control what is happening to my body, but to be honest I’m just too stubborn and hopeful. On one hand, I have never been good at taking “NO” for an answer, so the fight remains in me. The other end of this is my enormous feeling of hope. I truly believe if we continue to spread awareness, we will find a cure.

Jump for joy

The I CANS Of Ankylosing Spondylitis

By | Featured, Support | 20 Comments

Having AS has presented many opportunities for me to throw up my hands and give in to my disease. I know that if I do this it WILL get the best of me and staying positive is the only way to move forward. I know I must live “with” AS but refuse to ever live “for” it. I may not be able to completely control what will happen. Will I ever live pain-free? Will I completely fuse? Why me? So many questions run through my head as they do for many AS patients. We MUST all realize how strong we are! We may no longer have the physical strength but our mind and hearts must stay strong and never give up.

I put together a list of “I CANS” about a year after my diagnosis and I thought I would share it with everyone. I will admit that the first year of my diagnosis was one of shock and lack of acceptance. I quickly learned that I wanted more than just to be a person with this disease and that is when I chose to battle Ankylosing Spondylitis head on. My hope for you is that some items will help inspire you to stay strong and continue moving forward.

  1. I CAN live life with AS
  2. I CAN be thankful for my husband’s support
  3. I CAN hug and kiss my children daily even if it means not being a hard squeeze every day
  4. I CAN be strong even if my physical body is not
  5. I CAN be beautiful even with thinning hair and bruises
  6. I CAN smile at others
  7. I CAN love God and know he is there for me
  8. I CAN envy the “healthy” without being critical
  9. I CAN do something even if I cannot do everything
  10. I CAN love with all my heart
  11. I CAN help others even when I feel helpless
  12. I CAN and will be my biggest advocate
  13. I CAN accept I have Ankylosing Spondylitis
  14. I CAN be afraid of what will happen
  15. I CAN be okay with not having all the answers
  16. I CAN have less painful days
  17. I CAN cry
  18. I CAN wonder why me
  19. I CAN stay positive
  20. I CAN inspire and be inspired
  21. I CAN be a fighter
  22. I CAN learn as much as possible about AS
  23. I CAN have a successful future
  24. I CAN share my AS story and experience
  25. I CAN help spread AS awareness
Winter weather

Weather vs. Ankylosing Spondylitis

By | Featured, General | 13 Comments

Now that Fall has arrived I sit and wonder what the cooler weather will bring to my adventure with Ankylosing Spondylitis. I’m not sure how I exactly blocked out last year’s colder season, but realize it is here to stay, at least for a few months. When it comes to a person with AS I have learned that it all depends on the individual patient on weather preference. Some love the warmth of the Summer, some the brisk chill of the Winter months and some of us just want a split of the two. You know, the “perfect” weather.

Summer Sighs

As I bundle up and head to the bus stop for school with my kids I’m already hoping for the warmer days. I then think I must have forgotten those days where the heat left me almost immobile. Those days just recently slowed down since September just left us. With AS I look for every opportunity for pain relief and would often head to the pool to cool off in hopes that maybe the pain would be a little less. I would then get out of the pool and that Georgia sun is once again scorching down on me and instantly swells my body all over again.  Air conditioning is definitely a best friend of mine in the Summer time. I was always a sun bunny in the past but, unfortunately, I have had to learn my limits now.

Winter Woes

The cold nights keep me snuggled up looking for any form of relief from the stiffening of my joints. When Winter comes, for me, it is pretty impossible. The winds can be brutal here in the Winter which makes our cold weather slap me around a bit.  I never know if it will effect my hands, feet or back that particular day but unfortunately I wake up knowing something is going to be sore daily in those few months. I have accepted Mother Nature’s cruel weather tricks, but really wish there was something more than a heating pad and meds I could use to find some relief during the frigid weather.

70 and Sunny

For me, there is NOTHING like a Fall day. Not to hot, not to cold, just perfect.  The sun shining yet not with radiating an uncomfortable heat or cold.  A stroll around my neighborhood with the cool wind blowing gently through my hair.  The air massaging my skin as to say, Mother Nature is not a complete witch, she does want you to enjoy some type of weather. I seem to feel more energized and just happier all around. I guess it comes back to when you feel well physically, the emotional drain picks itself back up to help you push on.

Share With Me

AS’ers – Which do you prefer hot or cold? What helps you through those uncomfortable weather days?

Support System – Can you notice a change in your AS loved one when the weather changes, either physically or emotionally?