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Friday, August 24, 2018

I'm Ashamed And You Should Be Too

I once was this girl who believed love was like fairytales and everyone deserved it. Even the most unexpected beast was worthy and with the right beauty they would shine as they were always meant too. 

I guess there’s a downside to fairytales though, they are not real. Eventually we all wake up and see reality. Reality is harsh, and cruel and not everyone deserves the best of you. This presents a new challenge. How do you survive in a world without love? 

You can’t, hate only destroys everything in its path, but love, love can bring the deepest of pain to the surface. So what do you do? How do you find your place in this new world? 

News reminds us everyday that what I’m saying is true. Our world is full of terrorist attacks, school shootings, husbands murdering their wives and children, mothers murdering their children. People dying because of their color, or gender preferences, or who they love. 

We are full of a society of people who need to be reminded that they have a child in the car. Phrase like “put something  important in the backseat” tell us that somehow people don’t value their children enough for them to be that one important thing. Animals are abused and images are passed around social media all while doing nothing to stop this from happening. People look the other way and don’t even bother to report it when they see it, they just catch it in action and make it a viral post in social media. 

We have children recording fights like it’s the highlight of their day. Spreading hate among social media just to rip apart someone’s pride, self esteem and emotional stability. They think telling them to die is okay. They are mean and clueless and we just allow it to happen. 

Our world is no longer designed to make a happy home. Families full of divorce, children left alone in the system wishing someone would love them. Politicians and Religions telling us that if we give someone the right to choose abortion than we are only contributing to the harm. All while not giving the right only means more babies get murdered after birth and our system fills even faster with lonely children wishing for love. 

Drug addicts are seeking a high for a happiness they will never find, because it’s not the drug they really need, but to no longer feel the pain they are trying to hide. We don’t help them, instead we just condemn them. They are left believing nobody cares and the world has only contributed to the problem by addicting them to drugs paid for but unaffordable. So they hit the streets and do what they think they have to because they just can’t stand the pain. 

Our patients that are sick and hurting are left with no options because the system doesn’t believe in helping those in need. If pain medication wasn’t so readily available then we could fix the addiction. Now those in pain are viewed as seekers and they get ignored. Left to their own devices to cope with their pain. Wondering if anyone cares about them. 

Churches exclude people based on how they dress, if they have tattoos, who they love, and what their gender preferences are. People no longer feel safe because church shootings are a real thing, and you can’t even just worship God without fear of damnation by those who feel differently than you. It’s not just about those who are not Christian, because the Christians make mistakes too. 

What has our world come to that being a teenager means you contemplate ending your life because bullies can’t be controlled? How is it fair that our children have become so desensitized to love that they think hate is a normal way of life? When did it become okay for our children to be so misguided that they found internet fame meant more than their own life? 

We have a society of people who are offended by everything and agree on nothing. From the way we run this country to the way we spend our free time. You can’t like guns, you should support guns, you can’t like this flag, or that flag. This statue is offensive and that one stands for racism. No matter what side you are on, someone will tell you your wrong. 

Women are supposed to accept that sexual abuse only occurs because they asked for it, dressed inappropriately or acted in a way to suggest they wanted it. Men are supposed to accept that they are men and men don’t get sexually abused, but they do. Men are raised to believe that’s the way you are supposed to treat women, after all they are men and it means no harm, until it does. 

Cops are reluctant to trust civilians and civilians reluctant to trust cops. Because hate crimes towards people by cops are real, because hate crimes towards cops by people are real. Bad cops get by with a slap on the wrist and society is tired of things not changing. People are angry because social media demonizes situation they know nothing about and have no details on. Cops are painted bad, civilians painted bad. How does anyone win? Guns are pointed because fear was instilled. Fear was instilled because guns were pointed. Break the cycle, make the change. There is no trust, and without trust how can any of us truly be expected to behave without fear? 

It’s broken my spirit because I have been on the receiving end of far to much pain. It makes me sad that I no longer believe in love and that everyone deserves it. The truth is everyone is out to help themselves and nobody else. Selfishness and pride has taken over. I lost my spirit and now I don’t know where I belong. It makes me sad, but I don’t know what else to do. You can’t depend on people, and you can’t depend on the leaders of this country. 

If you could, this world would be in a far better state. It’s only gotten where it has because someone dropped the ball a long time ago and nobody has bothered to pick it up. NOBODY! This didn’t happen overnight or even in a few years. This has been in process for many, many years. So don’t go spouting of which Leader is to blame, they all are. 

I have worked hard in life to only get knocked back time and time again. I ran out of steam and can’t keep up the fight. It’s a loosing battle anyway. What I think is that somehow what I had to say, what I felt inside mattered. What is realistic is that it doesn’t matter enough. They claim one person can change the world, but only if given the opportunity. Whose going to given a crumbling girl with nothing but a dream an opportunity? That’s right, nobody is. 

Instead the world would rather kick you when you are down. Because if they keep you down, you will never accomplish anything, and they keep control. They say that we are warriors, but don’t warriors get acknowledged for the battles they face? Instead nobody knows who we are. People don’t listen, and we feel alone. 

Our healthcare system is flawed because for to long people have taken advantage of what was available. Now you have frustrated staff who no longer have empathy, and angry patients no longer receiving quality care. Each blame the other, when it’s truly neither of their faults. 

Our school system is flawed because everyone thinks they have better ideas and things have to change. They implemented new forms of learning and stopped teaching what’s truly important. No more just teaching, it’s fast paced learn or be left behind. Bullies in students and in teachers. No money and no discipline either. 

We have sick with no care, homeless with no help, and hungry without meals. Yet we send money overseas and fund people we call professionals to throw balls and play catch. How will it ever make sense that we pay more money to someone who can memorize lines, or handle a ball, then we do to someone who can memorize how to save your life? We pay our front line healthcare staff less then we pay some retail workers. 

We complain that people want more pay because we don’t value their job. We forget that we can’t all be Doctors and lawyers and famous actors, or athletes. Someone still has to work the little job. It’s not easy to have people yell at you all day that you are not fast enough, or that you messed up their food. You get talked down to, and have to deal with fast paced and busy shifts. Though it might be simple to throw a hamburger together, when someone else messed it up and you get cursed at for it, don’t think they can’t have a stressful job. Stop thinking we have to hold down the little guy, instead provide them with the tools to succeed. 

This world needs love again. This world needs hearts that believe in fairytales and souls that burn with passion. This world needs people to care again. Sounds simple right? Then tell me how we get there? We need responsibility first and compassion second. We need ownership and accountability. From those who matter most, the leaders, the people with the power to make change. If we don’t see it there, how do we ever expect to see it any where?

Maybe this makes no sense to you, but I’m saddened by it all. It’s embarrassing to know this is our country and we let it get this way. I once was a girl with so much passion for everything, now I’m a girl who looks at the world around me and just wants to cry. I used to light up when “I’m Proud To Be An American” came on, now it breaks my heart that people argue about if we should have pray in school and where God does and doesn’t belong. 

Let The Bonds Be Broken

Let The Bonds Be Broken

Power Of A Message

We all know the power a message can have. For example, a picture speaks volumes. The number of things that can be taken from an image alone are astounding. Some of my blogs are written out of pure emotional desire to speak about something that I am directly going through, my health for example. Other times I am compelled to write about something that I have observed and have strong feelings about. Each time, each blog is one done from heart, from bravery and from a place that I no longer feel silenced in. When I write, I write about my personal experiences and yes, my opinion creeps in there, but nothing that I write about is something that I have not actually been through or witnessed in my very life.

That all having been said, recently I have watched with a heavy heart words fall from others mouths on topics that need a bigger light shed on them. I have read things on Facebook that just compelled me to share the power of a message. Once again, like any other time, I have personal experience with and have been witness to things I will be speaking about. This is a way to show the world that you don’t have to be ashamed, don’t hide in silence, and don’t fear the dark place you might be. Come out into the light, rip of that gag and speak loud and be heard!

Used And Abused

Now, for some of you this isn’t going to be an easy read. This isn’t going to be easy to talk about either. Some of these things nobody wants to be reminded of, others many people in my life don’t even know about. Some things a person thinks they have to carry to the grave for shame and a world that would rather silence us then stand up for us. This today is to be the voice of those who have ever been raped, assaulted, mentally or emotionally abused, sexually abused or physically abused. Today I will share my personal accounts of a life lived in silence for the most part. Let me first start off by saying, I have some knowledge in regards to growing up in an above mentioned situation that I will refrain from going into any detail over as even though I am aware of things, they are not my stories to tell. I will leave it at this, I did spend a time of my young childhood growing up in a home that had certain forms of above mentioned abuse occurring in it.

I had a great amount of my life revolving around feelings of being used and abused. Many times feeling as though things were my fault, other times not understanding at all why things occurred. Like I told you, some of the things I will talk about here, not a single person in my life has ever heard me talk about, others only a handful of people are aware and some things a wider range of my personal connections actually know about. I have decided to talk now, to remind people just how important it is to speak up, to be supportive and stop the silence for all abuse. Nobody should have to live in that shame, that darkness and if we don’t all stand together, we cant change anything.

You Never Knew When I Was Young

Growing up, I never told anyone about something that happened to me on more than one occasion, why not, because of course I was made to feel ashamed and made to feel as if nothing was wrong with what was happening. I was a kid, I honestly didn’t understand then that what was happening really was something I shouldn’t have kept a secret. I can tell you now, that even though I am talking about it, I will never say who this person is. I do not hold any unhealthy feelings over it, I simply moved on and moved past it. That’s not okay though, a person should never do such a thing, because then its just made to appear normal or acceptable. It is never acceptable.

At the age of 11 something happened to me and it happened several times over the course of a couple years. The person doing it was not in anyway a parental figure, nor where they a relative of mine. This was someone that had a connection to my family though. Another reason I have always been hesitant to discuss this is because of that very reason, I was and honestly still am afraid that someone would get mad at me for it. I know, stupid right, why would I fear that at my age now? It is the way society is designed to make us think. I don’t know what exactly to call what happened to me, we are conditioned to believe rape doesn’t occur if you don’t say no, but an 11 year old shouldn’t be put in that position to begin with and certainly isn’t capable of understanding those choices. I was put in the position of having sex with someone, call it what you will rape, sexual assault or abuse, I am not sure what the proper terminology would be for it. I just know as an adult that no 11 year old child is capable of making the decision to have sex with someone and it be a mature thought out situation, and anyone trying to say otherwise is completely wrong for trying to make people believe it should be okay, especially not when they are of legal age!

Sometimes Once Isn’t Enough

I had long forgotten about the ignorance of some adults as I grew older. Far out of my mind never did I actually suffer any emotional damage that I was aware of from anything that might have occurred during my childhood. In fact I had a pretty strong opinion about ever letting anyone abuse me, having witnessed things as a child, I knew I never wanted to let anyone hit me. I never would be that girl who ended up in that relationship, and I was serious about that. It wasn’t right away that I even realized there was a problem once there actually was one. It kind of snuck by me super unexpected. Once I started to see something wasn’t right, and I asked about it, I was made to feel like it was my duty as a woman to please the man she is with at all cost.

So here I was a newly single mother of three in my early 20’s 24/25 ish. I was getting some interest from the young and extremely attractive neighbor. He was 21, so not too young, just younger than me. I thought it was really going to be a decent thing, and then I started having health issues that cause major problems with my ability to have intercourse.  I’m talking massive amounts of pain, completely unbearable. It was then I realized something wasn’t right, because the first time when I couldn’t take the pain and I needed to stop, he wouldn’t have it. I pushed through it, miserable didn’t even describe it, but once it was over it was over. I honestly couldn’t understand why he wouldn’t want to stop, so I decided to talk to someone and was told it was my duty to satisfy him at the cost of my discomfort.

I was not okay with this, it continued to occur sometimes I didn’t have pain and that was great, but the times I did I would be in tears and begging, “please stop, please stop” that’s how bad it hurt, and it didn’t matter, he just wouldn’t stop. we stopped being intimate and started arguing. This is when he started to show signs of physical violence. Swinging a bat wrapped in barbed wire at me and striking the bed instead and then attempting to choke me. I defended myself and choked him till he was on the ground, however it didn’t end so easily. I wanted it too and thought it would, but no. One last blow up and I was drug out of a vehicle by my hair and then after getting towards the middle of the yard, I was hit in the face. Let me say, I most certainly hit him back! That did put an end to that horrible situation. This time not leaving me so emotionally undamaged. I suffered and didn’t even realize this.  For a long time I wouldn’t let anyone touch me and would flinch if they did. It took a great deal of work to get beyond that. I’m talking up until here just very recently I would shut down if someone so much as looked at me with the wrong potential look.

History Seems To Keep Repeating Itself

Like I said, some things are not my stories to tell but lets just say that my life took me in a direction that for many years left me questioning and blaming myself for something that I may or may not have been able to change the out come of. To this very day, this is something that has changed the balance of factors in my life and honestly probably will forever.  This is once again something that makes me believe it is all that much more important to stop the silence. It has got to become easier for people to talk about all aspects of these situations. Families need to be able to lean on each other as support and for understanding and guidance. Friends need to be available for the same thing.

Once it would seem life was improving, my past would begin to catch up to me. I had met someone I thought was going to be a good husband. I was married for the second time. It was during this time I discovered quickly that I was not in a healthy place at all when it came to trusting people intimately. During those times, I didn’t want to be intimate, or due to my health I couldn’t be intimate, it was a real struggle for me to understand if it was acceptable for my at the time husband to be viewing me as and referring to me as someone who was simply there for his pleasure. This started arguments, and then religious beliefs being stacked to make me feel defeated and as if it was some how my soul purpose and intent by GOD to be a mans sex slave. Sorry, but that’s not my desire. I have a body that deserves respect. Of course this marriage didn’t last long, 1 year and divorce was finalized, but not before after waking up in the recovery room after a surgery and being told how difficult it was for him to resist just taking sex while I was unconscious. What kind of person even thinks that way?

Then Life Gets Worse

One might think I have been through and seen enough. Life didn’t have it that way, in fact the worst was all about to just get started for me. Things began with me starting a new relationship, one that I knew very  quickly was a mistake, but the way narcissistic people work is getting under your skin and making you believe you need them. Of course the shame is so high and real that you don’t want anyone to know what is really happening in your life. Smiles and false presentations of a happy life is all you are capable of.  Once again, I have never told most of the people I know a few of these things. Maybe even none of them know about some of these things.  This journey started instantly with emotional abuse. Even before we were actually dating, I was being told that I didn’t dress right, my hair was the wrong color, length, I didn’t fix it right. I had bad taste in everything. I had not one single thing about me that was a good or positive thing according to this person.

I knew from the start this was a failure, but I didn’t realize how this person was getting inside and destroying me and creating the control they wanted. I once had a Madonna style beauty mark on my check just above my lip. I was teased about it a lot as a kid, so no I wasn’t a fan of it, however, it was part of me and I couldn’t change it. Not until this person came along anyway. Never in my life had I ever been faced with someone wanting so badly to change a person that they wanted to change their physical appearance at all cost. I was told how disgusting it was to kiss with “that thing” on my face, how it was the only thing they could look at, and how I was ugly because of it.  

One day I woke up and felt something odd, I was bleeding and didn’t know why. It turned out that this individual had placed wart remover on my beauty mark while I was asleep. It had caused it to bust open and was now bleeding. I went to the doctor and they said the best thing was to remove it. I now have a scar on my face that everyday I see and am reminded of what lengths a person is willing to go to in order to break someone down. Granted, I am a million times more confident about myself with it gone, but it shouldn’t have been something done in that manner I should have been able to keep it, or remove it based on my own thoughts.

This relationship didn’t get any better. I was forced into believing everything was my fault, that I couldn’t do anything right. I was stupid. I didn’t want to be intimate because I was compared to the ex and told I would never be good enough to be as satisfying as the ex was. In fact, I was cheated on, and it wasn’t done secretively, I received a phone call as soon as they were out of town and told, “I am spending the weekend out of town with my ex. I don’t regret it, and it is your fault I am here.” I put up with any and all behavior because I was made to believe I couldn’t be anything or do anything without them. I was kept in a financial bind by my money being controlled. I was forced into doing many things I didn’t want to do, out of threats of other things happening if I didn’t.

Until You Are There You Just Don’t Get It

I never thought I would be in such a situation that I not only wouldn’t know how to get out of it, but wouldn’t have the needed qualities to do so either. I lost all self esteem I had, my confidence was zero, and I was so depressed that I honestly thought everyone in my life would be better off if I was dead. I was nothing but a useless screw up and my life had proven that over and over again. This person made sure to constantly remind me of that.  Things escalated beyond the emotional abuse and it became physical. Instead of standing up for myself I just apologized and begged and pleaded for it not to happen and for this person to just love me instead. Arguments picked constantly just so they had a reason to push me to the ground, or smack me or kick me. It went as far as me being choked in front of my children.  I thought this was as bad as it could get.

It just never stopped gaining momentum at this point they realized they had all the power and control they wanted and it was going over board. Cracks made about how they could easily push me off a cliff while hiking, and nobody would question it being an accident, or watching snapped on TV and saying, “you make me want to do that to you.” I was left stranded in a parking lot in another state, the kicker here, is it was my own vehicle. I was left stranded on a few occasions after my car breaking down and being told I would be offered no help.  On two different occasions during an argument the car was actually used as a weapon towards me. Once this individual drove into the yard trying to strike me with the car. Other times I would be getting into the vehicle and not be all the way in and they would start driving off, one of those times I was knocked off balance by the door and grabbed ahold of it and they kept driving, me hanging on to the door. It could have gone to a very bad place, but thankfully I finally was able to get away from that situation.

Then Again The Innocent Children That Suffer

Of course I have talked about a lot of ways that abuse has factored into my life. No, I am still not done, however, thanks to hard work those days will forever be gone from my life. My children didn’t get to walk away from life unscathed from any of this. Sadly the emotional abuse rolled onto them, I found all of that out after the fact. This entire situation of events has led to a difficult, trying and stressful relationship for me and my children with lots of resentment of things and lack of trust that I could and would be their protector. I failed them thanks to my inability to believe in myself. My son, not only suffered from these things, but was struggling with depression during all this because of fear of telling me, or letting me find out. To top things off, he is hanging out with what is supposed to be some friends of his, and he is at the time, 14 years old and like I said depressed and struggling form issues already that he was keeping secret.

This 18 year old girl decided to take advantage of his vulnerability and talked him into trying alcohol for the first time. After doing so, she then took advantage of his lack of ability to make good judgement calls, or to protect himself properly. She cornered him in a bathroom and when he tried to get by her, she tripped him easily as he was off balance from the alcohol. She then held him down and physically left bite marks taking out a couple chunks of skin to restrain his arms and allow herself to try and force him into sex. My child was left feeling very confused because he was a boy, why was this happening to him. Then he was also afraid he would get into trouble because he had drank alcohol. Thankfully he came to me, and we were able to do something about it. Unfortunately, I cant take it away, I cant change that my kid has had to experience these things.

This Is Why The Silence Must Stop

This is why this is something that does touch me close to home. It is so important that we stop and make it known that abuse of any kind at any age is not okay. These things can be stopped and prevented. With the right knowledge, and awareness to signs a person can protect themselves and others. If we talk about it more, we can rid the world of the shame of bringing it out into the open. Lets get real, and vulnerable and deep! We need it in order to change things. I am here to tell you first hand, I know because my family is one of those statistics, it does not discriminate, age, gender, race, financial status, its all irrelevant. Spread the word, and if you don’t want to talk about it, then don’t, but share this in order to get others taking action too. Lets do more to protect each other. Be there and offer support, let those who have experienced such things know that its not there fault and that they should never feel guilt, shame or fear that telling someone will ever be harmful to them in anyway.

Thursday, August 23, 2018

Behind Closed Doors

Behind Closed Doors

Don’t Suffer In Silence

After reading a blog from another individual suffering from an invisible disease it shed some light on something new for me today. Of course this inspired me to sit and write once again, So many out there suffer in silence, they don’t want others to know, or they just simply know that others will never understand. However, this is not true. Take some time to read the spoon theory by Christine Miserandino if you haven’t already. It was while reading her blog that I came to a very important realization. I suddenly knew that for some people in my life, they truly get it and others, they still don’t but maybe just maybe something like that read will give some clarity.

I have children and they are not to be expected to understand what I am dealing with, however I am always trying to find ways to help them truly get it. Then again, how does someone who does not have any type of medical or disabling issue ever truly understand it? I know based on spoon theory you can say that you have to give up a spoon for every task you complete and how many will depend on the level of energy required to complete this task. It made me think a lot of running on a gas tank like our car.

Is Your Tank On Full

When I started really trying to think about things I do and how my day is altered by my decisions it made so much sense to me, so why not to others as well. We get in our cars every day knowing we need to be aware of the gas level. How far can we go before needing more gas? Do we have the money to get gas if we accidently use more than planned? Say that every day that you get out of bed you are checking that gauge to see how full your tank is, its no different, some days its going to be fuller than others, some weeks its going to need replenished sooner than others.
If you are a healthy person, I can imagine that’s still a difficult connection for you to make, as I am sure you are thinking, well I fell worse some days than others myself, so it must not be so bad. That’s not true though, you are a healthy car running up to par so yes on some occasions your tank will deplete faster than others, but that is all in your control, did you do more than usual, drive some where different, any variation can change the outcome for you.

For those of us that are sick and dealing with a diagnosis, it is more like having a hole in your gas tank and knowing that you have to manage to get from a to b over and over again constantly fighting this draining tank. Not only is it draining faster, but it is also costing more and more to refill it. It might even need to take a full day of down time to try and fix the damage. This is how it feels every day to be us.

I Speak Because I am Loud

As a child I was told I talk to much and I am way to loud, Well now I know why. I was meant to use those things to benefit many others who suffer just like me. Just because I talk doesn’t mean you shouldn’t though. This is why I said don’t suffer in silence. Stand up and start talking about it, tell people how far you have depleted yourself for the day and don’t let anyone make you feel bad for it. We deserve to feel good about ourselves, we fight so hard every day in order to do what others take for granted.

It hurts sometimes just to get a hug, Being intimate, oh that’s going to make you hurt so bad. Trying to enjoy a day outdoors, or just spending time with friends, that hurts too. Often times the ones we love the most don’t understand it at all, then sometimes we get lucky and have someone dear to us that also suffers from invisible pain. They look at you when you flinch and they say they totally get it, they understand each and every sacrifice that you make to do what you do. They don’t question when you can’t or don’t do something. Rare as it may be, it is out there and it is so nice to have those

I’m Not Ashamed To Show The World My AS

I have become more and more open sharing my life with the world, opening up my most vulnerable parts in hopes to somehow connect with someone who might just need to hear my words. I am daily struggling with unexplained medical issues, having an ever so chaotic roller coaster ride of ups and downs from pain and sometimes the spiral loop that slings me spinning out of control. Many people unless they read my blogs have never heard some of the ways I struggle. I don’t expect the world to cater to me, but I want the world to understand. Let me tell you, nothing is worse than having someone get mad or irritated with you over something that is beyond your control.

Some days I am busting my butt to work as hard as I can and unfortunately that ends up being done with little to show for it. It is perceived as laziness or just thought that I simply did not do something because I didn’t want to or decided other things were more important. That might be the case at times, well, not the lazy thing. I promise if I don’t complete something just because I didn’t try at all, it is because I genuinely do not have the physical, mental or emotional ability to do it thanks to the unfortunate side effects of battling a constant  energy draining illness.

Don’t Be So Quick To Judge

Many times I have had to be on the suffering end of a rude and disrespectful individual who just doesn’t understand why something is so hard for me to comprehend. Let me be the first to tell you I get it, I hate unnecessary stupidity. I also believe that unnecessary stupidity can come in the form of  self entitlement on some peoples part. Not only in my daily life, but in my job I am constantly faced with factors that stress me out because of problems related to my medical issues. Why is this, because I know that someone else isn’t going to understand what is happening to me when I don’t understand it myself. Let me also say, I am so sick of people blowing me off with the remark “we all do that, its normal.”

We all seem to think we can judge a book by its cover and we know all we need to know in order to form an opinion that can be sometimes very harmful to another’s ability to focus on doing their best. If I say to you that I didn’t understand what you just said, I’m sure you think that I simply misheard you, or didn’t hear clearly. That isn’t always the case with me, sometimes when someone speaks to me, especially when giving me information I need to be trying to process into actions. This information is received as a scrambled mess and I am then in my head trying to figure out what was just said without having to ask for it to be repeated. Sometimes I have to have it repeated and sometimes many times.

I forget things so easily, things I shouldn’t forget, things I don’t want to forget. It is frustrating to carry on normal conversations because I slur my words and stutter sometimes, because I cant think fast enough to keep up with what I am doing. I will be asked questions and even though I should know the answer, I don’t even understand what I am being asked. I do task based on what level of strength and energy I do have, but also the mental ability to keep getting confronted by irritated people. I feel bad enough on my own over the things I struggle with, once someone makes the step of being “that jerk” and telling me I am stupid or yelling at me or any of the sort because it annoyed them that I didn’t understand properly or complete in a timely manor what they wanted, that is a moment that will change my entire day. I don’t have the energy for it, so I make decisions based on what is more important in regards to my ability to function. Can I continue this without additional symptoms occurring, if not then I wont its that simple.

Living In A World That’s Passing You By

Many times I think of how unfair it is for anyone else to have to deal with the frustrations of my illness. Then I stop and think to myself, “they can kiss my ass!” They think it’s annoying, try being me! As I said before, don’t be so quick to judge. Although I did not graduate high school and I was a single mother of 3 before I ever got a GED or any real job experience, I used to be super smart. So now, to be looked at as if I am dumb or incompetent, not only pisses me off, but it makes me feel totally useless! I graduated the GED program top of my class, with Honors and yes, they actually do that. I was Valedictorian of my class and walked the stage so proudly having my babies saying “that’s my mommy!” I was an EMT trained and certified to operate an emergency vehicle, knowing how to get just about anywhere without a GPS and knowing how to drive in high stress situations and care for others whose lives depended on my actions.

I went to college and was attending a very good college and making honor roll grades in Criminal Justice Classes. Now, not for lack of trying, I have given up on ever graduating college because I can’t regardless of the time and effort, I can’t understand the work. I lost all hope because it stressed me out and after failing to keep up a GPA to standards, I was released from school. How did I go from the girl who could have told you how to save a life during a trauma, or of a burn victim, or knowing how to treat numerous medical issues,   to being the girl that can’t even find her vehicle in a parking lot! Seriously, If I don’t have someone with me, I will not find my car for a few minutes. How did I become the girl who cant even comprehend a phone number being said to translate into me typing it on the computer instantly? It is a little frustrating, I will be the first to admit, however I can’t control when its bad or how bad it will be from day to day. The only thing I have control over is limiting my contact with the idiots that are too self entitled to be bothered by a little bit of an annoyance in their day.

Control What You Can And Forget The Rest

Sadly I am very limited to what I have control over. I can’t do anything about my pain level, how bad my cognitive issues will be, or if I will have any other random flare issues on any given day.  I can however, stop hiding from the embarrassment of it and start talking, I can share and spread awareness to the things that make my life more difficult than others might deal with. I can avoid any potential stressors that might trigger additional flares. I can avoid contact with others whom just can’t be understanding. I can’t just give up having a job, so unfortunately I have only a limited amount of control to some of that, however I can fight every day for awareness and research and answers. Why, because eventually that might lead to me having a normal life again. If not, it might lead to the needed steps to make disability an option for someone who truly struggles to do their job thanks to medical issues.

I can be a fighter, a warrior and I can own what I am and who I am and face it head on in hopes that someone else may never suffer from the things I have. I can be thankful for those who understand what I deal with and do their best to make my day a little easier. I can’t give up on life no matter how hard it gets for me. I will now and always kick some AS! I am warrior strong and each time my eyes are opened to new areas of myself, of my struggles, I look forward to sharing it with those that might need it.

Wednesday, August 15, 2018

It’s Just a Straw, What’s The Big Deal

What’s This Straw Craze All About

We live in a world that is constantly changing. We are always looking for ways to improve and protect our planet. This is great, until we forget about a large percentage of the population. I’m sure you are familiar with the current discussion of straws that has hit social media. If not, please allow me to give you a brief explanation. There is a large group of people moving to ban straws due to their beliefs that they are more harmful to our environment then beneficial for their intended use.  This is no small movement. Many companies and cities committing to ban single use straws.  

Starbucks, Hyatt Hotels, Disney, Seaworld, American Airlines, Royal Caribbean are a few companies that are moving forward with plans to pass a straw ban. Many cities are getting on board as well. New York City, Miami Beach, Portland, Seattle and many cities in California including San Francisco have joined the movement against plastic straws. In California a bill was actually proposed to make it illegal for restaurants to give plastic straws. 

Please Don’t Forget About Us

There are approximately 325.7 million people in the United States. Out of those approximately 2.7 million suffer from a Spondyloarthritis related disease. This is not the only potentially disabling disease out there. Mental and physical disabilities of all types exist. We are asking that you please don’t forget about us as you work to improve the world. What do I mean by this? For many of us, straws are a necessity. One might think the answer is clear, with production of reusable straws. However, this isn’t always the answer. 

For those of us suffering from a Spondyloarthritis diseases, we have a compromised immune system. Many of us take an immunosuppressant to manage our disease. This means our already strained system is that much more susceptible to germs. Why does this matter, because studies show that a reusable straw container can hold an average of 25 colony forming units per square centimeter on the straw. That’s just 2 units less than a toilet seat! Our health can’t take that kind of risk. This is far less then slide top or squeezable containers, but still not the answer.

It’s Not All About The Medical Concern

Having a disease like in my case, Ankylosing Spondylitis can bring on many other challenges than just a suppressed immune system. I know a lot of people with AS, some of them have complete fusion of the spine. Imagine if your head was permanently stuck in a downward looking position. Try to drink something from a cup WITHOUT a straw, how did it work out? You couldn’t actually drink from the cup without moving your head could you? This is life for some people. The only way they can drink is with a straw.

Many people with a disabling disease face a financial hardship. Purchasing a reusable straw isn’t an option because they can’t even afford to make rent or buy their medication every month. It’s not as easy as just buying one straw either. You need a specific type of brush to clean it, and a way to transport it while keeping it sterile. That comes out to more money than most of us can spend. The suitable options can range from $10-$30. It doesn’t seem like much until you realize that one medication can cost over $6000. 

Company Verses Individual Replacement 

Who is going to provide the replacement option? It’s still not simple. Companies won’t provide a replacement because that wouldn’t be cost effective. We would still run the risk of unsanitary straws being provided. Let’s face it, not everyone washes their hands when and how they should. Could you imagine the level of risk we would be at if a server didn’t wash their hands after using the bathroom and then touched the reusable straw being placed in our drink? 

Say the companies do offer a replacement. This will come at the cost of price increases. Then nobody is happy and we still can’t afford the option offered to us. People will argue if you can’t afford a replacement straw, then you shouldn’t be spending money on the extra things to begin with. What about drinking at home? We still have to provide our bodies with nourishment even if it’s never at a restaurant or other location that bans straws. Complete cities are joining in on the no straws agenda. How will we drink if we can’t even purchase the one item that makes that possible for us? 

We Deserve The Best Quality Of Life

Just like everything else I have discussed, many things contribute to the impact a straw ban has on our quality of life. Brain Fog is a real thing, and a constant struggle many of us face. We can’t always remember to grab a reusable straw every time we go out the door. We can’t always carry a bag to place the straw in, and they definitely won’t fit in our pocket. Many of us are on our own. No help to remind us, or offer to carry things for us. We deserve to live our life to the fullest we can. Without burden from others who want to take away something that is so beneficial for us. 

Did you know that straws are not even in the top five category of litter? Straws make up 3% of the plastic found in oceans. Seems a bit ridiculous to have cities making it illegal to use straws now doesn’t? In cities like Santa Barbara each straw handed out would be an individual crime. Making it possible for someone to get more time than your average felon. All this just for handing out an item that makes it possible for many to drink anything at all. 

Stand Up For Us, Stand Up For Straws

Please join me in fighting to protect our quality of life. Make disabilities matter in the eyes of the world. Stop making decisions without considering the impact they have on others. Eliminating straws won’t make the world a better place. Ensuring you don’t forget about us will. 



The United States Census 
Spondylitis Association of America 

Get Green Now 

Sunday, August 12, 2018

The World Is Not Designed For The Sick

There Is No Room For Me Here

Have you ever walked into an Emergency Department waiting room and felt this way? Surely you have, it just might come in different statements, but it’s the same concept. You enter the door and see a waiting area filled with people and your first thought is, This is going to take forever! You instantly regret the choice to make the trip to the ER, but what other choice did you have? Well, if it’s after normal business hours, or a weekend, it probably was. There was nowhere else for you to go. 

This is where I tell you, as advocates we must take actions ourselves to get the things we need. Nothing will ever change if we don’t. We need to stand up and start fighting for our healthcare rights. The right to adequate treatment at a fair cost. How many of you have a high CoPay for an ER visit? I’d bet a lot of you do. Yet, what other choice are you given? It’s time we stop allowing the healthcare industry to monopolize the services and demand we get something better. We must make noise in order to be heard. 

What Would Fair Healthcare Look Like

Well, to start with, it would be 24 hour Urgent Care at the same CoPay as regular hours. It would be changing the system used to determine who gets seen when at the ER. It would be refusing to see non emergent case in ER’s without referral from an urgent care. How about the CoPay being reduced in a referral case to equal that of the Urgent Care Facility. Things like this will overall decrease the stress load on ER staff, resulting in better care, more attentive care, and Staff wanting to continue their contracts at these facilities. 

This will also open up more jobs in the market for Healthcare Professionals, as we would need to staff the Urgent Care Centers for 24 hours. Jobs are always a positive thing for the economy. We need to push for more options on medical transportation as well. You need a company that offers affordable handicap accessible transportation for everyone, not just those on State funded insurance. Ambulances are costly and not always available for a non emergent transport. Something else to think about is the financial success of these agencies. Many ambulance services do not get insurance information and are left footing the bill when there is no response. 

Our Laws Require Us To Be Insured

We all know that Healthcare isn’t cheap, and it’s certainly not free. What works for one isn’t necessarily the best for another. Yet we don’t really have customizable plans.  They give us a few options, and usually even the good ones come at some cost. For example, my insurance only covers 5 prescriptions a month at my CoPay cost. Anything above 5 is out of pocket 100%. Yes, I am fighting for the approval for all medications to be covered under my CoPay, but that’s not simple and not quick.  When you have a Chronic disease, it doesn’t go away. Many medical issues mean life long prescriptions. Many people needing a lot of them. I take more than 5. My Biologic alone cost over $5000 a month. 

Not only does our government see fit to fine us if we are not insured, but they also think it’s appropriate to allow the cost of insurance and medical treatment to be so high that people can’t afford the expenses either. What do you do? You are not given a lot of options. State insurance has difficult to meet qualifications, you can’t customize a package to suit your needs, and you don’t even get a choice on where to seek out this treatment at times. This is not what it should be like to live healthy. It should be a basic human right to receive healthcare at an affordable cost. 

First We Start At The Beginning 

Well, my plan like I said isn’t perfect. If we get loud and start fighting for things, we can make a difference. It may take a lifetime, but it’s worth trying. So, we get loud. To start with let’s get a solid transportation source for those who have no means of travel. We need Healthcare Cabs that are handicap accessible and at an affordable cost that can be covered by insurance. 

Let’s face it, if you don’t have a vehicle, and you are sick, handing out a big upfront payment to get somewhere isn’t going to help. This will also take the load off of the Ambulance Agency’s running non emergent calls, as well as those calls to 911 dispatch. Most people don’t know the non emergent 911 number and when they don’t feel good, they probably won’t remember or look it up. We could create an overall system operated out of dispatch the same way, but on a non emergent side and through a different line such as 922 or something like that. This also creates new jobs. 

They Need A Place To Go

Once we know we have the starting operations ready to go, we get to handle where these people go. This is when we have Urgent Care Facilities operate 24 hours a day 7 days a week. The Doctors office isn’t open all the time, and the Emergency Room isn’t always the answer. We need to redesign they way the ER intake process works at the same time. There is already a system in place on what gets taken back immediately and what can wait. We just need to tweek this. If you are not emergent, then you will be referred to Urgent Care or you need to be prepared to wait it out. If you are non emergent you will be a “fit in”. When they can. This will put a stop to so much of the ER overload. 

What happens if you go to Urgent Care but they refer you to the ER, because it’s just outside their abilities? Well they contact the ER advise you are coming and at this time depending on the need, you are either transferred and taken back, or transferred and placed in a triage area only waiting behind Emergent cases and other referrals. There will be no waiting behind non emergent cases. Because The ER is not the place for them to be to start with. Again, we have created more jobs. 

If you have even bothered to look around an Emergency Room before now, you have probably noticed they have a decent amount of rooms that are not in use at any given time. I work at a hospital and at any given time only half of our ER is operational. This is where our triage referrals should go. Once in these rooms they can be placed on monitors and given a small amount of staff to monitor until they are moved to the other side of the ER for treatment. 

How Can We Make It Affordable 

We have to put a stop to companies monopolizing the system. I’m sure it’s more than just here. In my local area, the same company owns all the Hospitals, Urgent Cares, and several Doctors Offices. They also have a few pharmacies under their belt. What does this do, it means that they can charge anything they want too, where else are you going to go? To another location they own? 

We also need better and customizable insurance plans. There should be no fine for not being able to afford insurance, instead a project in place to ensure you receive insurance at whatever you can afford. Yes, I know some people need state funded insurance, but many of them don’t. I also believe they should have a customizable program. We give you state insurance and based on your income and expenses, we give you insurance at a specific rate after considering those factors. Not everyone that needs State insurance, needs it free. Some of them can afford CoPays and such just like everyone else. 

It’s Just My Thoughts

Living with a chronic disease, I feel the need to improve the world for others who experience things like me. I recently had to visit the ER. I also work at a local Hospital. I not only see what I experience, but what our patients experience as well. I see those to poor and worrying how they will pay. I see those sitting endless hours in waiting rooms. I have been that individual. I know those individuals. When you don’t feel good, have chronic pain, and any other issue, you don’t feel like sitting in a room full of other people. 

At my recent visit, I couldn’t stop vomiting. Nobody wants to vomit in a room full of people. You definitely don’t want to do so for hours. You want to lay down, and be in your own space. You want something to stop the vomiting immediately, not hours after arrival. If the system was better, if you had an option, you might not have to do that. Of course, we risk an influx at Urgent Care facilities of people needing seen. If you live anywhere like me than you have a handful of Urgent Care locations in the vicinity of one Hospital. If we divided all the patients among all facilities considering some would be Emergent and some Emergent referral as well as those who just refuse anything else and choose to wait in an ER, it would balance out quite well most of the time. 

If We Lived In A Perfect World

Unfortunately we don’t. So clearly this is just a day dream. I’m certain their is a much better solution. I have no background in business, and I’m definitely not the person to go to on politics, but in a perfect world my plan would work. We would all have free healthcare. The government would want to help those of us that are sick, rather then toss us to the wolves. In a perfect world the goal would be curing the sick, not just treating them. 

I just felt compelled to talk about this, and touch on a completely different aspect of living sick. You just feel like there is no room for you. In a world that’s not designed to consider us, from banning straws to the difficult process of gaining Disability. It’s a world we just feel like we never belong, and the healthcare industry is no different. Doctors don’t believe us, we know ER’s won’t help us. We don’t believe we need to be in an ER in most cases. What are we to do? Well, we get loud and we demand this world acknowledge us and give us what we need! 

Until Next Time Kick Some AS