You know, when you're diagnosed with a long term disease, that currently doesn't have any cure, it truly takes a huge toll on you. All it has is a bunch of drugs, some of which deteriorate your bones and damage your cartilage. That moment you find out, it's life changing. It's not just life changing for you, it's life changing for your family - when you live at home or visit - and it's life changing for those you date or marry. Your diet changes, your weight changes, almost everything about you changes.
Everything for me is trial and error. I'm not on medication, I control my Crohn's Disease strictly with diet. I have Asacol (gastrointestinal anti-inflammatory), but I don't take it, it's mostly for if I'm having a really bad day, and this stuff is $125 for 30 days worth of anti-inflammatories.
It's almost surreal, you've been sick for who knows how long, and when you finally find out what's going on, you don't want to believe it, you live in denial for a while. You want nothing to do with the changes you're going to experience in life, or the changes you're going to be forced to take. I was 17 when I found out, I was sick for two years prior, I lived in a small town, getting the tests necessary to find out what's going on takes a long time. That and the doctors there take a really long time to even consider sending you for the tests. At 17, this seems like your life is over, like you will have to work your absolute hardest every day to stay healthy, and to be positive about your disease. And you know, that's how I felt, everything was harder, my mom had to either cook extra food for me that was different than theirs, or they had to eat according to my diet. That in itself isn't easy.
I think one of my biggest fears is and always will be that it is too much for my family or my significant other. That's what I thought about when I first met Wade, I almost didn't want to tell him I had such a debilitating disease, something that could kill me, or that I could have multiple surgeries for and it would never truly go away. I told him, and within three months of us dating, I was in the hospital for a flare up due to stress. He somewhat surprised me, he stuck with me, at the hospital, and through everything. (I've already talked about this in a past post so I won't go on) That's when you know someone is willing to make every sacrifice to make sure your health and wellbeing are the best it can be.
Wade has adjusted his diet to what mine is, he only eats what I do. I don't know if it's simply because he's that incredible and nice, and would rather not make me make different meals for him and I, or if it's simply because he doesn't care. He knows what I can and cannot eat, and what may and may not bug me, and he makes sure that I keep up with that. He does buy some stuff that I can't have strictly because of Crohn's Disease, like oranges. I can't even be around the smell of them when they're being peeled, so he takes them strictly for his lunches and doesn't eat them in the house.
Your life changes when you have a disease like Crohn's. It can change for the better, or it can change for the worse. You have to make it what you want it to be. Lately, I've been doing incredible health wise, I'm also not working a 9-5 job (I sell coffee/tea products), and I'm getting adequate amounts of sleep. Generally, to have a good day I need about 8 hours of solid sleep, uninterrupted. I have been sticking to my diet, and well breaking into some of my avoids list, simply to test how the Mycelium and Ganoderma capsules have been treating me. I am now out of the Ganoderma capsules, so I'm taking the Spore Powder and Mycelium, along with a prenatal vitamin. This is day two of the Spore Powder, so I don't have much to report just yet.
I guess what I'm trying to say is that, you need to make the necessary changes in your life to make your debilitating disease manageable. Keep positive, and stress free, take vitamins and eat healthy. Also, go for at least a half hour walk every day, or mow the lawn. Something equivalent, that is exercise, because it truly has some of the best effects on you, and the fresh air is always nice. I don't do yoga, or exercise videos or anything. My weight has been maintained by walking, yard work, house work, sometimes I go for some bike rides, but mostly I eat healthy and keep up on my nutrients. Make this new life of yours with a disease, the best your life can be, and continue to live that way. There is no better feeling in life, than when you are feeling the best you've felt in a long time.
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