Today, I think I'm going to write about me for a change. Not to say that this blog isn't about me in a sense, but this one is more about me than the world around me.
Yesterday, I had my 8 week reminder that I've got an incurable disease. I hate even writing the word "disease". It sounds so sinister and menacing like I could die at any given moment. I'm guessing I've got a better chance of being hit by a bus than I do of dying of my disease, but you get the picture.
I was diagnosed with Crohns disease about a year and a half ago. And every 8 weeks I head into our local hospital for IV therapy to administer a drug that keeps me going for the next 2 months.
I also take one pill a day along with a multi vitamin and an iron supplement. I hate having to take any sort of drugs. A bottle of acetaminophen would go past its expiry date in our house waiting for me to consume it. I just don't like having to take them, it seems wrong on some level.
I'm not some holistic, cure by using seaweed and dandelion juice person by any means. I don't have a ton of faith in that approach either, but moreso I just really would like to avoid having to take anything to cure what ails me.
It's unavoidable in some cases, especially mine. Left untreated, the Crohns probably would kill me in some way shape or form. I look back now and realize that I've likely been sick for a good 10 years or more, I just didn't notice it.
I had a really bad "flare" as they call it and my haemoglobin levels dropped to dangerous levels. They were talking blood transfusions, severe anemia etc… not really a good scene. I was really really not feeling good, and no one knew why.
By comparison, after all these drugs I feel good right now. My haemoglobin level is double what it was a year and a bit ago, so that in itself is an accomplishment. There's some good folks taking care of me in the medical profession and for that I'm thankful.
And I do realize it could be much worse. There are those who struggle getting their disease under control. Those who can't afford or don't have access to the medications/medical facilities that we do. I know I'm fortunate and I try to be grateful everyday because you don't know when it might change.
Will my body start rejecting the drugs that I'm getting? Will we have to start over at square one? How long will I have before side effects from the drugs come into play? Will I obtain a long lasting remission? Will I ever be able to be drug free again, or is this a lifelong thing?
So many questions that are left unanswered everyday.
But I don't dwell on it. So many people let a diagnosis such as this monopolize their whole life. They let their disease define who they are. They live and breathe it so its at the forefront of everyday. An excuse or reason for everything they do and say.
I vow that won't be me. Ever. Period. Yes, I have this disease, yes, it can be very nasty and debilitating, but it's not ever going to be who I am. It's not going to be a reason I can't do or be something I want to be.
I want people to be surprised when they hear I have Crohns, to say wow, look at all the things she can do and accomplish while living with this. I don't want any "oh you poor thing" looks.
If it takes 5 hours hooked up to an IV every 8 weeks and pills for the rest of my living years so be it, I will fight to be just me every step of the way…
To all those fighting your own health battles…keep your chin up and kick the crap out of whatever you've got...
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