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Sunday, May 27, 2018

I wonder if you even know?

Does A Person Ever Really Know

Today I ask myself this question. Do we really know what another person is experiencing? I don’t think there is any way for us to actually understand the suffering of another human being! If we did, I believe this world would be a far nicer place. Nobody would intentionally cause such distress if they truly got how it felt to be on the receiving end of a bad situation.  I think this holds true to any life problem we encounter as well. For example, my children lost their father, and I my Ex Husband, but does that mean I understand how they feel? I have never lost a parent as they have. In the same token, they will never understand where my pain comes from and how deep it runs. We share a common tragedy, but we all feel differently about it. I used that example, because it ties into my story as we go further. 

It is no secret that I have Ankylosing Spondylitis, I’ll assume if you are reading this, you have read my other blogs, if not take the time to catch up on those. I think they are worth the read. I try to be informative and educational as I tell my story, all of which I do in hopes to help raise awareness for AS. In the past 14 months my life has changed so dramatically. I have kind of watched as it’s changed. Many things not very noticeable to anyone other than me. This brings me to the question that entered my mind today, Does anyone REALLY understand it?

Well, I Know You’re In Pain

Many people say this to me, “ Well, I know you’re in pain, but that’s all I know.” I have even heard this, “ You went out and enjoyed some time at ____, you must not feel to bad.”  One might think because I go to work, or attend my sons graduation, even take a short road trip, that I can’t possibly be too sick. That’s where they are wrong. When attending my sons graduation, I couldn’t keep up with my family walking over. Do you truly have any idea what something so trivial is like for me? No, because 14 months ago I was hiking trails 10+ miles in length and several thousand feet in elevation. Now, I can’t even walk across the street up a couple of feet in elevation. Stairs, forget that, climbing stairs feels like I’m climbing Mount Everest! 

The Part You Can’t See

What you don’t see is the smothering and crushing weight I feel in my chest. This feeling seldom ever goes away. What you don’t see is the 59 times my Oxygen level dropped into the 80’s or lower. Have you ever truly known how it feels to not be able to get enough air? I’m always exhausted. I get frequent headaches, I cotnstantly get sudden urges to vomit. I have a cough that never goes away. At this very moment I am just sitting here, rather comfortable and typing my blog, would you guess that my oxygen level is at 83% currently? Just in case you don’t know, anything below 95% is not normal and anything below 90% is definitely not normal, in fact just a few short minutes is all it takes for tissue to start dying from oxygen deprivation. Just a few minutes in an abnormally low range, say 83% and you could begin to have a lot of life threatening problems.

The Part You Don’t Hear

As I walk along looking at the amazement of items in the museum, or laughing with family, or taking that scenic drive, you don’t hear the massive pounding heartbeats in my chest. You don’t hear the squeezing in my chest. You don’t hear the pain that’s coursing through my body. If you listen closely, you will hear when I’m struggling a little more, because I have to breath before finishing a sentence. Or because I’m stubborn as all get out, and try to rush the hole sentence out before I run out of breath. If you listen closely you will hear it. You might even hear labored breathing, and shallow breathing. If you watch, you will see how frequently I am “belly breathing”. Abdominal breathing can occur when shortness of breath is present.  


What If You Did Have All This Knowledge 

Just knowing details doesn’t mean anything. I can know a lot of things, but that doesn’t mean I really know how those things feel. I know a broken bone hurts, but I have never had one, so how can I know what it really feels like? A lot of people are sick, stressed out, wore out, does that mean they know exactly how I feel? They might have a sense of it, but they don’t know. Not a soul on this earth knows how tired I really am. I don’t mean tired that taking a nap or getting a good nights sleep can fix. I mean really tired. I a, tired of hurting, I’m tired of things going wrong with my body, I’m tired of always being sick, I’m tired of being tired. I’m tired of not getting to live my life to the fullest. I’m tired of not being able to hike, I’m tired of not having answers, I’m tired of fighting, I’m tired of being scared. 

Would You Want To Know The Future

People get asked this all the time, it’s just fun and games. Would you really want to know though? Is it easier to not have answers or is it better to know what the future holds. For me I don’t think it will change anything. I’ll still be sick either way. I’ll still be raising awareness and I’ll still be doing exactly what I am doing now. However, I also know what I have to loose. I know that the future is always uncertain, but I have watched my health decline over the past 14 months. So this makes me think a lot about my future. What things I want to accomplish before I die. Do my kids have all they need to succeed in life? Will Barbara be taken care of? Those are real questions for me, for anyone honestly. For me, it’s more a matter of the things nobody sees, that bring these questions to light. My days are filled with crushing chest pain, shortness of breath and oxygen drops. Lots of Doctors and more questions. My total lung capacity has decreased and so has my diffusion capacity. 

What’s This All Mean

It means I wait for answers, and push for Doctors to act quickly and without hesitation. It means I need them to hear me now more than ever. My body is not moving Oxygen and Carbon Dioxide properly in and out of my lungs. This is clear in symptoms and testing. I have a low CO2 level in labs, and more testing to come. What else does this mean? It means I have to think about the what if’s and the future. It means everyday that I feel worse, it’s harder to hold on to hope for a positive outcome. It means you may not see all the ways this is impacting me, but I’m suffering terribly. It means that it’s harder and harder to fight when I’m losing more and more strength. It means my life might forever be different, even if that just means a life of disability. It’s not easy, and nobody will ever understand how it feels to look at your children who lost their father 2 years ago, and wonder how long they will have their mother. 


Please hear my cries when I ask you to share my story, my words, my journey, be a part of raising awareness and in helping me #KickSomeAS