Its 7:12am on a sunny Friday morning. I woke up at 5:00am to a message from a friend needing support. For those of you not knowing, I'm LIVING with Crohn's Disease. I have been LIVING with this disease for close to 10 years. The friend was a fellow "Crohnie Brother". For weeks now, he has been battiling the pain, and begging for his chemo therapy infusion of Remicade. (same chemo drug I am on for 5 years). He told me he is an emotional mess. No one in his life seems to understand what he is going through, and he feels alone in his fight against this horrible disease. My heart sank when he told me this.
I am known as the "Warrior". So, I gave him my "Warrior" speech, and Im going to share it with all of you, who are either having your own battle with health, disease, sadness, despair or just feeling alone. I told my friend, that number one, that the "Key to wellness is an endless and loving support system". Without that, who will stand by you? Who will be there to wipe the tears, or just give a hug when the pain is too unbearable to tolerate? He agreed. He also mentioned that the people in his life "Just dont understand me Amanda". Its not that they dont understand, its just that some people are naive and choose NOT to learn and become familiar with Crohn's Disease, therefore know NOTHING about what its like, and dont give the unconditional love and support that is needed.
My husband of 13 years, Jeremy, has stood by me through this all. Pain, internal bleeding, basically living at the hospital, the 5 years of infusions I undergo, days I cant get off the toilet and so much more. I know that without my husband, whos my biggest supporter, I wouldnt be where I am today. Case in point. We all need support as we endure this. My heart goes out to my friend. I explained that sometimes loved ones can just stand beside us as we face the challenges of Crohn's, but its us who walk this battle field alone. Meaning, some choose to live with it, and some choose to suffer. But no matter what, we have to physically feel the horror by ourselves. I tell alot of my fellow Crohnie brothers and sisters this, when one of them is flaring up and has no positivity at the moment. "We are in this together, one wipe at a time." They laugh and it puts that smile on their face. Maybe its that one "Angel" (previous blog) that they needed for the one second in time.
Being in a support system runs like this. Here's a good analogy, and I say this alot to get people thinking and to know we are all here for eachother. This can be applied to anything trials or struggles in life. "Your a ship out in a rocky sea. The waves are high, and you see no help in the far distance. Not even a spotlight. And right when the storm gets so bad, and you think the ship will sink, here come these little tugboats, pulling you in to safe and calm seas". This is what it is about folks. Lending any kind of support to your fellow brother and sister.
This is all connects to my personal life and my work ethic. My message is simple, and should always be applied. My message applies to my work. Here at Arc Angel, we are giving back and supporting those who have no support, no little tugboat to bring them ashore, no Angel in sight. Its my personal mission and calling to help and support anyone whos going through times like this. Sometimes just a few simple words can make someones day. Just knowing someone whos there, on the other end of the phone, or the computer screen, understands what the other is dealing with. It gives a comfort zone, a safe haven you could call it, that we are not alone in any of this.
I hope this has inspired you somehow. Because everyday I come across people who are inspirations to me, who deserve the recognition for trying and battiling what most people cant. Please visit www.CCFA.org for more information on Crohn's Disease and Ulcerative Colitis. You will find stories that will touch your heart, and very useful information that can help you understand what us Crohnie's have to live with for the rest of our lives.
My love to all my little tugboats,
"Warrior"
My blogs are based on fact, love, food, laughter, health, workplace,& family
Your friends' support system sounds like mine. Non existent. Only rather than just being clueless and not caring, they also like to walk all over you when you're laying there on the floor. I don't know how i've been able to get to the place where I'm at, which is almost remission when i've been struggling to get better now for 5 years. The damage was that bad that it has taken until now to finally feel better. Believe it or not, I still have so much fight in me still I just give all the credit to God because there is no way i could have done this on my own
ReplyDeleteWhen it comes to my family, it has been a painful few years to realize that you really only have 1 or 2 people in your whole family that gives a shit. My father is getting old and doesn't want to be bothered with knowing what the disease is or anything... His wife constantly makes things difficult for me along with an evil aunt of mine and he never defends me. Last Christmas I didn't go to the family dinner that was held at my Aunt & Uncles house. At that time people actually conjured up a belief that I was a thief; all because I would come into town and sleep the whole weekend because I was anemic and unaware at the time. It looked "suspicious"!
Are you kidding me. Yes, this is my family that i've come to accept that they do not love me unconditionally and they dont care to know what Crohn's is . No one would defend me if they were faced with a situation that put them in that position. Why would i want to hang with any of these people. I don't! I rather be alone and hang out with my cat then in the company of selfish sucky people.
So, I can relate to your friends' life and being surrounded by people , but no one that really cares to understand. In tine, you just will accept them as they are. I just refuse to grow bitter because of these people. They will not get me down and my decisions will be made solely on being true to myself. i'm not taking them into consideration anymore.