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.
I know how much you push through each day. I know it's tough but you always muster enough strength to get through it. I'm very proud of you for it. I love you and the strength you have to keep power over such a cruel disease.
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