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Sunday, July 1, 2018

It’s Not Called An Immunity Disease

It’s Not Called An Immunity Disease

We Can’t All Avoid The Bad Apples
Recently I was reading through the post in an AS support group on Facebook, yes I know, the land of the offended. When we are in a group like that we don’t expect to see the things that are meant to knock us down. This is one place we go as a safe place to confide in others with an understanding of what we are dealing with. I Said safe place, like we need to be sheltered from something, when that is far from the truth. We actually probably need worried about a little less than everyone else if you ask my opinion. We all know what it is like to live a life that you physically have to work at in order to get through each day. We all know how easy it is to forget how simple some things can be until that moment when doing that simple thing is no longer easy. This having been said, I ran across a bad apple in the group and it brought on inspiration to write a little more.

This individual posted using his free right to express his opinion, however some opinions are like ASSHOLES, ya know. It was said that we were selfish, cry babies, because we post in the group about medications not working, or being incapable of doing certain task, and venting of family stress.  This post was a bit lengthy and repeatedly used bullyish wording. It referred to the individuals ability to live with no medications and what task can be completed each day. Well, That’s great for them that they can ride their Bike a great distance. Guess what, I can hike a mountain gaining thousands of feet of elevation. It’s not easy, but I can do it, have done it and will do it again. That does not make it okay to throw insulting language at anyone else.

Life Isn’t Hard Until It’s Hard

I can promise you everything in my life hasn’t always been hard, nor easy for that matter. It has been a mixture of up and downs. As I believe it is in most cases. We are all one in the same, some of us just get caught up on some elevated platform and forget that we break, bleed, and die just the damn same. I Don’t care how fast you pedal your bicycle,  if a semi truck comes along and runs you over you are still the same amount of DEAD! Now that we have all established that, lets move on. 

Words don’t hurt me, they used too, it took counseling and a long time forcing myself through uncomfortable situations to prevent words from hurting me. Why is that, because when your body puts limitations on you that all the world doesn’t see and also doesn’t believe to be acceptable it tends to take a toll. It’s hard to feel confident and strong and brave when nobody understands you have no energy, get confused easily and don’t even know why yourself.

Like I said, it’s not hard until it gets hard, right? Climbing a mountain is easy when it is flat, or goes down hill. It gets tough when the incline comes into play. Being sick isn’t hard when all you do is take some Tylenol and the fever breaks right way. Being sick is only hard when you can’t take medicine to relieve the symptom. Or when the symptom is so difficult to connect to a diagnosis that you can’t get help. It’s all easy, up until it’s not any more. Nobody gets to put down anyone else for having a hard time doing anything. Especially not when you have limitations placed on you that you sure as crap didn’t ask for.

When You Are Sick, But You Get Sick

Having this disease means one thing, you now have a weaker immune system. Your body attacks good things because it does not understand what is good or bad. Then Bad things come along and your body doesn’t have what it needs to fight it off. Did I forget to mention that I am on an Immunosuppressant for disease management? This means I have an even weaker immune system. With that being said, my everyday life becomes hard. Why because nobody else out there is thinking that anyone else around them could be at risk of their dirty germs. All day everyday I risk picking up someone else’s cold. A cold that might be super simple for them could mean hospitalization for me, Pneumonia, who knows what. So yes, Life is harder because I have to think about whoever is around me and if I hear them cough or sneeze or did they wash their hands.

Then I get sick, and when I do, it is harder to get rid of, and I have to think, when do I go to the Doctor, because this isn’t getting better, or is it progressing into more? Oh and my insurance only pays for five medications a month, so then there is the whole out of pocket expense if I get sick and need additional medication. Does that mean I cant physically get through my day? No, it does not. However, it means I change my way of thinking greatly dependent on certain things. Does it make my life harder than it might be, yes, do I vent about it, yes, but do I whine about it and expect someone else to handle life’s problems…No, I Don’t! Missing work means missing pay, and that means stress on paying the bills. If I am sick and I go to work, I could catch even more contagious germs and get even sicker. So something simple becomes more complicated for someone like me.

Just another day

For many of us living with AS this I have described is really just another day in the life. One of the many things we face because of the disease we have. Most people never realize just how much it actually impacts us. Never batting an eye at how much it might be taking for you to accomplish certain task, because day to day we get up, get dressed and go to work. We return home raise the family and repeat it everyday. Making those phone calls, and texting the loved ones about plans for the next get together. Routine is something that you get so accustom to that we all get lost in, this makes it easy to forget that others may not be dealing with the exact same set of circumstances as us.

In my day, its just another day to feel pain, to be mostly miserable over the pain. I struggle to breath, sleep, complete certain task and the list goes on each and everyday. That is my everyday, I still have no choice but to get up and go to work, pay my bills and provide for my children. This world is not one designed to accommodate a one income family, so yes I need to work. Some days, working is so hard that I physically think there is no possibly way I will make it through the day. I do though, I make it, and I do it again over and over again. This to me is real strength and bravery. This is what just another day in most lives looks like. This to me calls out the presence of a true warrior far more than one that can alter their diet and pedal a bike down the road. More power to those of you who get that lucky. To the rest of us…..

Bitch, Whine, Complain, Vent ALL You Want, You Deserve It!

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