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Sunday, June 17, 2018

If I Was A Stranger

Do You Take Me Seriously 

Do you really? Think about that for a minute! If you said yes ask yourself one question, do you share my posts when I am raising awareness? Don’t lie to yourself, because I know the actual answer to that question. I have had my posts viewed over 5,000 times and in every country at least once. Do you know out of that how many times any of you helped spread the word on awareness? 17 total times! That’s 17 times out of more than 5,000! That leaves me asking the question, DO YOU TAKE ME SERIOUSLY! Don’t get all offended, just think about that for a minute and let it sink in. You could help me go a long way in raising awareness for AS if you just spread the word, by sharing my story? I’m doing everything I can, to change the world for a massive community of people.

You don’t have the first clue what it means to me, but to others like me too. How many of you knew what Ankylosing Spondylitis was before I started talking about it on social media? I know 1 person that knew before me. Once upon a time nobody knew what cancer was, what Multiple Sclerosis was, do you know that many ages ago, people just got cast out as freaks for genetic deformities because nobody knew what it was. It took a voice from someone not giving up to change all of that. Think about it, you all have seen my life change drastically on social media. Where are all those hiking videos, pictures and posts I once made? I didn’t give up, I didn’t change what I love, I can no longer do what I love so deeply. I have been far to sick to do it.

What If I Said The Scary Word Terminal

What if I start giving you statistics, did you know in one study it is reported that people with AS have 43% greater risk of dying from vascular  disease, a 60% higher risk of cerebrovascular death, 35% higher for cardiovascular death? With each year of age the vascular death rate increases by 12%! That’s just what the increased risk is in those ares. Do you know AS patients are at greater risk of osteoporosis, and spinal fracture? Did you know how easy it is for the wrong movement to sever the spine and be life threatening to anyone? We have a compromised spine, with weakened bone mass that increases our risk of fracture and death greatly compared to the general public. For someone healthy, a car accident can be brutal, the healing process lengthy. For a patient with AS, one car accident could mean we never get back to what we had before. The healing process goes haywire in our bodies. Our bodies are already attacking themselves, now you just damaged it and expect a broken system to preform proper repairs. No, that won’t happen, instead, we will forever loose something. This will trigger a flare, and that flare could trigger inflammation in the heart or lungs that now has become terminal.

Having AS is like many Cancers, in the fact that you can’t see it. However, unlike cancer, it’s different because nobody knows what AS is. It’s like cancer in ways like some cancers spread and force themselves all over the body. AS spreads all over your body too. You might start with just back pain and stiffness. Then something triggers the flare, and suddenly you have inflammation of the eyes, Iritis, or Uveitis. AS is like cancer in that some cancers make you sick and weak. AS makes you sick and weak. What do you think happens when you are so tired that you can’t even feed yourself? Your body eventually gets sick from lack of adequate nutrition. When you have no appetite and can’t eat because it has your stomach and esophagus so inflamed that you choke on your food, or your intestines are so irritated that you throw it up. AS is not like cancer in the way that nobody is spreading awareness for AS like they do not trying to downgrade cancer, just trying to shed some light on how difficult AS can be for us. We need your help raising awareness. Without the help of others, we can bring this to light.

We Have Come A Long Way

 A year ago, Facebook didn’t even have a profile frame for Ankylosing Spondylitis, and when it first offered the fundraiser feature, the Spondylitis Association of America wasn’t available on it. Now, those things are there. Amazon offers the Spondylitis Association of America as one of its non profits  you can choose when shopping on Amazon Smiles. Did you know that at no extra cost, you can give a little to the SAA just by shopping on Amazon Smiles verse the regular Amazon website? The SAA has big things coming, and I’m excited to see where it goes. I have big things coming and I can’t wait to see where they go. Blogging isn’t my only effort to raise awareness. It is just the easiest and most readily available option I currently have.

I’m working on my first fundraising project as well as 3 other ways to raise awareness and raise funds. I lead a support group, I’m active with the SAA, and have big big ideas. I look forward to growing more and more, but I need a little help from all of you. So show me some love, a simple gesture and start sharing my hard work to raise awareness.


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