I feel frustrated.
I feel broken.
I feel damaged.
I feel overwhelmed.
I feel exhausted.
Above all, I feel hope!
Hopeful that life no longer has to be like this for me and it doesn't have to be like this for you either. I'm hopeful that living our lives without fear is starting to outweigh all of the frustrations, brokenness, damaging parts and the overwhelming sense that life brings to us.
For the first time there is a hope in a freedom from the anxiety that I feel has caused so much pain and suffering in my life. While there will never be a way to escape this about ourselves-we might as well embrace it my friends-we can learn to live with it. We do not have to make our lives about fighting something that is part of us. Notice that wonderful word 'part' the meant it doesn't define who we are as a whole. It's just a fragment of who we are.
The past seven years I have let my anxiety control so many aspects of my life to where I only leave the house for work or with my partner, for one friend (because most of my friendships have been ruined by my seclusion that I bring upon myself), I avoid as many social settings as possible-even shopping is hard for me.
However, last night, I stepped outside of my comfort zone and went to a get together honoring the life of a pretty special friend to this group and a friend of my boyfriends. My boyfriend knew more of these people-I only knew him and the one hosting the gathering. For me to show up at something like this, is really unheard of. I just do not do this. It terrifies me to be in a crowd like I was last night. Or, should I say it did terrify me. Typically, in events such as this you will find me in a corner by myself playing with the dog or clinging to my boyfriends arm desperately hoping that he can tell I want to leave, like NOW.
Instead, last night, for whatever reason, this all just changed. There were times, I didn't even know where he was, I think I talked to ever single person there one-on-one, feel like I made some new friends, but one thing will never change about me-I still played with the dogs!
I realized in watching as everyone who knew this young man celebrate not only his life but their lives as friends, of being together, of taking that time to stop and just have a "good time". Something I do not know much about-a good time for me, involves a book, my pjs and the couch, Netflix and online shopping.
Instead of reaching for that overwhelming feeling of anxiety, I chose to reach for hope. I want to embrace life and have experiences that I cannot have if I am shutting down and shutting others out.. I'm choosing to be open and honest about this because so many of you have expressed how you suffer as well. I want you to have hope as well.
We will overcome this!
We start by fessing up that everything we have tried hasn't worked for us.
Secondly we have to admit that we cannot keep running away, avoiding our "triggers" situations, having "THOSE" thoughts, distracting ourselves, trying to change who we are, never getting out of of our comfort zone and medicating ourselves because in the end they are only a temporary fix for a life long problem.
----This is not a suggestion to stop any medications prescribed by your doctor for anxiety. Never make a medication change without speaking with your health care professional.--
For me, I have accepted I will probably be on medication for the rest of my life-while over all they do not solve my problems, they do help me to not have random attacks anymore and I do get sleep now but I still have fears and they are irrational. One example, seven years ago, you could have found me in 6 inch heels walking across a parking lot for work-my irrational fears have lead me to only pick shoes that I have less of a chance of falling in. Yes, you read that correctly, I do not wear heels any longer because I am terrified of falling down. Nor do I ride a bike, because what if I crash. I could go on about things that I do not do based on fears but it's time to move past all those fears and accept that it's time to start living.
In closing, the thing that I learned through a death of another was there is a life that I am not living and until I embrace the anxiety that is part of me I will not get to live that life-MY LIFE-to the fullest. I have a long road ahead but I'm excited because for the first time in a long time, hope out weighs all other negative feelings.
Sunday, July 19, 2015
Monday, January 19, 2015
Crohnie & Work
I wasn't going to blog tonight but something pretty neat happened tonight at my second job...yes you read that correctly. I'm a six year "crohnie" AND have two jobs.
In case you're confused on what a "crohnie" is, it's someone with Crohns Disease & if you're confused on what Crohns Disease is...well ask anyone with it and each person will tell you something different but with a few things in common.
1. We are tired. Not just your normal, oh I stayed up too late watching a Mad Men marathon tired but I just had ten hours of sleep tired and need at least five more hours to feel normal (this often occurs for me, I come home on Friday go to bed and will not leave my bed until time for work on Monday mornings.)The levels of fatigue we feel is sometimes unbearable-so you have to learn to deal with our crankiness when we haven't gotten enough rest. But to be honest about myself, I'm the meanest one I've met with CD to date when I'm not feeling 100.
2. We live in CONSTANT pain. So pretty much when you come to us complaining about the shoulder pain, back pain, neck pain or any other pain...we want to scream at you and tell you that you should be happy it's confined in one area instead of your whole body in constant pain from the time you wake up (an hour early just in case you aren't able to move a quickly as you would like) to the time you literally feel like you are pealing your clothing from your body to go to bed at night, only to have the weight of the covers fell like it's going to crush your body-it's not glamours. It's not sexy. It's not beautiful. It hurts. Simple task such as tying my shoes, cocking a gun, sharpening a pencil, airing a tire up-or using my hands at all are sometimes not an option. Some days I have to literally force them to move and type or write. The task to put pants on to lift one leg when it feels like it's going to break can sometimes cause tears. And you will most likely never find me in shoes that tie unless someone can tie them form me. Our bodies hurt. And not just one particular area it's from the tips of our toes to our hair-yes brushing our hair is sometimes painful, especially when you're a woman and on the medication that causes you to lose your hair. (Probably the worst time for me was when I realized that my hair was falling out.)
3. We use the bathroom-don't ask questions, sometimes we need to throw up other times...well.. Just stop your complaining over our time in there and be thankful that you can hold not only a meal down but all your nutrients from that meal.
4.Sometimes we don't want to eat...others times, we want to eat everything in sight. And while I'm on this topic...don't just assume because a person appears over weight & claims they have CD it's a false statement. A lot of the medications put on a signification amount of weight, over the course of six years I've gained 100lbs, (this is hard becuase I, at one time trained at a gym for two hours every day & the next thing I know I'm to weak to even pick up my dog) getting weight off is difficult when you're on & off of steroids. And yes...sometimes we sit down and devour steak like it's our last meal because our iron count is so low and most of us have anemia. We have a very found love affair with salt due to trying to get our bodies to balance electrolytes, PLEASE stop telling us how bad the sodium is for us.
5. We have a compromised immune system and when you fail to inform us that you have something that's possibly contagious...it personally pisses me off. I don't want to miss work because you have failed to inform me that you have a stomach virus, cold or anything else contagious. The stomach virus for you may last 24 hours, for us...we can end up in the hospital with IV bags-alert us that you're sick and stay away; because if you have it and it's contagious, we WILL get it. We pretty much run a steady fever -so keep us informed if there is something we need to know & buy us GermX-we love that stuff!
6. And one last thing...we aren't going to break & we are far from weak! I have an amazing specialist who I think makes everyone one of her patients feel that they can conquer anything if they set their mind to it. My last visit with her she informed me that something I never thought would be possible for me, was in fact possible-it's not something I'm ready for yet, but the thought of being able to have children of my own died when I found I was sick, but she says it's possible. I know have a new hope that some day waaaaaay down the line I could be a mother.
When I was first diagnosed six years, I remember being terrified and the whole story of how my sickness was even discovered made matters worse. I remember the doctors telling my parents they had to be praying people because I was sick that there was no real reason physically for me to be there that part of insides were that far gone. I was scared, terrified rather. More than anything I prepared to die. I didn't know if this as something that I would ever be "normal" again & I won't. There's not a cure, just our medication that makes it's tolerable.
Soon after I was diagnosed I received a package in the mail from David Garrard. I didn't know who he was before hand and didn't know what this person was doing sending me something. But the more I looked into the things that were sent, I was encouraged! For the first time I felt that those days of passing out on bathroom floors and constantly being exhausted, there was excitement. Because here was someone whose story was so similar to mine-thought we were suffering a stomach bug, went in for a routine doctor visit and the next thing you know you're being hospitalized and rushed into surgery. Fast forward a few years and he just completed a season with the New York Jets. This man has been a major encouraging factor in my personal battle.
It's why when someone realizes that I do have a sickness that has no cure and doesn't realize it that I don't feel the least bit upset. It encourages me to know that all the pain that I'm feeling day in and day out, all the struggles that this silent sickness gives me and how I portray myself does not influences their opinions of me. Most talk about what a hard worker I am and that's a major compliment.
Nevertheless, Several people with autoimmune diseases get very upset because people don't understand and want to give them a hard time or claim they aren't really sick but I ask guys, rather than get upset...be encouraged because you're doing good they can't even tell it. This means that rather than letting CD get the best of you, you're working hard to get the best of it.
You're picking up those feet no matter how much they hurt and you're pushing yourself through every single painful step. You're sometimes having to stop and physically tell your hands & legs to move. But you are doing such an amazing job at it and showing how strong you actually are when others make these comments.
So to the person who said they felt bad tonight, please...do not feel bad. Please know that you reminded me that I'm strong . That I'm doing ok and above all not showing any signs of weakness.
In case you're confused on what a "crohnie" is, it's someone with Crohns Disease & if you're confused on what Crohns Disease is...well ask anyone with it and each person will tell you something different but with a few things in common.
1. We are tired. Not just your normal, oh I stayed up too late watching a Mad Men marathon tired but I just had ten hours of sleep tired and need at least five more hours to feel normal (this often occurs for me, I come home on Friday go to bed and will not leave my bed until time for work on Monday mornings.)The levels of fatigue we feel is sometimes unbearable-so you have to learn to deal with our crankiness when we haven't gotten enough rest. But to be honest about myself, I'm the meanest one I've met with CD to date when I'm not feeling 100.
2. We live in CONSTANT pain. So pretty much when you come to us complaining about the shoulder pain, back pain, neck pain or any other pain...we want to scream at you and tell you that you should be happy it's confined in one area instead of your whole body in constant pain from the time you wake up (an hour early just in case you aren't able to move a quickly as you would like) to the time you literally feel like you are pealing your clothing from your body to go to bed at night, only to have the weight of the covers fell like it's going to crush your body-it's not glamours. It's not sexy. It's not beautiful. It hurts. Simple task such as tying my shoes, cocking a gun, sharpening a pencil, airing a tire up-or using my hands at all are sometimes not an option. Some days I have to literally force them to move and type or write. The task to put pants on to lift one leg when it feels like it's going to break can sometimes cause tears. And you will most likely never find me in shoes that tie unless someone can tie them form me. Our bodies hurt. And not just one particular area it's from the tips of our toes to our hair-yes brushing our hair is sometimes painful, especially when you're a woman and on the medication that causes you to lose your hair. (Probably the worst time for me was when I realized that my hair was falling out.)
3. We use the bathroom-don't ask questions, sometimes we need to throw up other times...well.. Just stop your complaining over our time in there and be thankful that you can hold not only a meal down but all your nutrients from that meal.
4.Sometimes we don't want to eat...others times, we want to eat everything in sight. And while I'm on this topic...don't just assume because a person appears over weight & claims they have CD it's a false statement. A lot of the medications put on a signification amount of weight, over the course of six years I've gained 100lbs, (this is hard becuase I, at one time trained at a gym for two hours every day & the next thing I know I'm to weak to even pick up my dog) getting weight off is difficult when you're on & off of steroids. And yes...sometimes we sit down and devour steak like it's our last meal because our iron count is so low and most of us have anemia. We have a very found love affair with salt due to trying to get our bodies to balance electrolytes, PLEASE stop telling us how bad the sodium is for us.
5. We have a compromised immune system and when you fail to inform us that you have something that's possibly contagious...it personally pisses me off. I don't want to miss work because you have failed to inform me that you have a stomach virus, cold or anything else contagious. The stomach virus for you may last 24 hours, for us...we can end up in the hospital with IV bags-alert us that you're sick and stay away; because if you have it and it's contagious, we WILL get it. We pretty much run a steady fever -so keep us informed if there is something we need to know & buy us GermX-we love that stuff!
6. And one last thing...we aren't going to break & we are far from weak! I have an amazing specialist who I think makes everyone one of her patients feel that they can conquer anything if they set their mind to it. My last visit with her she informed me that something I never thought would be possible for me, was in fact possible-it's not something I'm ready for yet, but the thought of being able to have children of my own died when I found I was sick, but she says it's possible. I know have a new hope that some day waaaaaay down the line I could be a mother.
When I was first diagnosed six years, I remember being terrified and the whole story of how my sickness was even discovered made matters worse. I remember the doctors telling my parents they had to be praying people because I was sick that there was no real reason physically for me to be there that part of insides were that far gone. I was scared, terrified rather. More than anything I prepared to die. I didn't know if this as something that I would ever be "normal" again & I won't. There's not a cure, just our medication that makes it's tolerable.
Soon after I was diagnosed I received a package in the mail from David Garrard. I didn't know who he was before hand and didn't know what this person was doing sending me something. But the more I looked into the things that were sent, I was encouraged! For the first time I felt that those days of passing out on bathroom floors and constantly being exhausted, there was excitement. Because here was someone whose story was so similar to mine-thought we were suffering a stomach bug, went in for a routine doctor visit and the next thing you know you're being hospitalized and rushed into surgery. Fast forward a few years and he just completed a season with the New York Jets. This man has been a major encouraging factor in my personal battle.
It's why when someone realizes that I do have a sickness that has no cure and doesn't realize it that I don't feel the least bit upset. It encourages me to know that all the pain that I'm feeling day in and day out, all the struggles that this silent sickness gives me and how I portray myself does not influences their opinions of me. Most talk about what a hard worker I am and that's a major compliment.
Nevertheless, Several people with autoimmune diseases get very upset because people don't understand and want to give them a hard time or claim they aren't really sick but I ask guys, rather than get upset...be encouraged because you're doing good they can't even tell it. This means that rather than letting CD get the best of you, you're working hard to get the best of it.
You're picking up those feet no matter how much they hurt and you're pushing yourself through every single painful step. You're sometimes having to stop and physically tell your hands & legs to move. But you are doing such an amazing job at it and showing how strong you actually are when others make these comments.
So to the person who said they felt bad tonight, please...do not feel bad. Please know that you reminded me that I'm strong . That I'm doing ok and above all not showing any signs of weakness.
Sunday, January 18, 2015
Just Breath & Enjoy!
This is a new month, but it's defiantly not the first day of this new month of this new year. Like most things in life, it takes me a little bit to get on the move or have things click in my mind. Every New Years on the first day of the year we see the "New Year New Me" line...but for me this year, I wasn't going to fall into that because to be honest, what's so terribly wrong with the old me & my life?
So, I'm going to take just a few short minuets to write my first blog of the year to make who ever reads my blogs aware that some changes that will be made in my writing. No more of this "Starting Over, Yet Again" business because...we cannot just "start over". Whatever happened that you didn't like, learn to deal with it and not let define or break up. Pick up and begin now to make the ending the best yet.
The reason for this mind change...simple, mindfulness. I stopped looking at the past wishing all the painful things that occurred had not occurred. I stopped all the planning and never doing and started looking at the people and things that I have in my life: family, friends (their children), my co-workers, my dogs, my home, two jobs (when most struggle to find one), a car, and the needs of my life that are being met every day no matter what I do. And I told myself, stop looking for the change and ENJOY what you have right in front of you. I've got some awesome people in my life & anyone who knows me knows I think my dogs are the most awesome things that have graced our planet.
In case you are unaware of what "mindfulness" actually is, it's simply becoming aware of what is happening right now without wishing it were different. Enjoying the pleasant without holding on when it changes-it always changes and dealing with the unpleasant without fearing it will always be this way-because just like the pleasant; it too will always change.
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