I had been planning to write about my experiences with ulcerative colitis for about a year. Last year was the 5th anniversary of my surgery and I thought of the idea but didn’t make a move to execute it. This was before I got this site and I have honestly been tired of posting strictly for Facebook since at least 2017. I then figured I would do it back in November since it had been 10 years since my first flare up at that time but it was still only a thought. Only in the last two weeks did I take the process seriously and figured I could give a high-level overview in a day. Then I started writing and I figured 5 days would be more than sufficient. But something happened on day 2 that changed my entire execution.
I have a draft for that day and some of it is included in part 3, but I started to skip over things to make a more concise story while realizing that there’s no way in hell that I could get it all out in 5 days, even if each day was 12 pages long. In my first year of having the disease alone, I got married, almost got divorced a month later, the health care bill happened, I lost my job, lost insurance, got job back, didn’t get insurance, and of course, Deandre not only died, but I got to have one last trip to Burger King like the good old days and didn’t know that it would be the last time. The way all of those things had an effect on my body and vice versa is too much to go over in a few days. Hell, from then on we can get into my redundant hospital visits, job changes, promotions, the music I made, the people I met, had my second daughter, took lots of pills and all of these things took a toll on me one way or another.
And so I decided to write a book about the whole damn thing.
Writing a complete book about literally anything has been a goal of mine for more than a decade and while I know I have the talent, I couldn’t really stick which of my projects I wanted to create it from. Did I want to use the stories I created with my secret pen name (later), nor did I want to work on the new idea my friend Carrie and I came up with instead? How about a book on love? None of these ideas really struck me as hard as the idea I came up with only this week. I can go into vast details about almost each and every month from November 2008 through now regarding my UC and after. It’s never really over, you just adjust better. So I’ll be working on that alongside my million other projects and of course, you’ll be hearing about it before it drops. I’m leaving this as a placeholder for how long it takes me to finish it.
Now for some final thoughts.
First - Insurance in this country sucks. The fact that your medical health is tied to your employment is some high-level skullduggery and the vast differences between plans and coverage is the worst. I started off with no coverage due to having a temp job so I couldn’t be diagnosed for 8 months, even though I got another job with trash coverage. Then when I had the best insurance possible, the health care bill swept my job up and my current coverage with it. In an ironic twist, it actually saved me after my initial surgery but was the catalyst for all the issues that happened when Sallie Mae (where I was working) was gutted. Everything was terrible. I even currently have a separate medical condition that isn’t being treated correctly right now because, you guessed it, a lack of insurance at my job. I absolutely support Medicare for all and I think we need a full overhaul of the healthcare industry.
Second - Within the healthcare industry we need to fix how we treat our issues. Having coverage isn’t everything when you aren’t getting what you honestly need from it. Our providers need to be brave enough to pull the trigger on big decisions and not just keep feeding us pills and treatments because the newest drug company supplied them. I should’ve had my colon removed within that first year but it took another 4 before it actually happened. Once I tried the most powerful options in the beginning, all bets should’ve been off. Instead, I was taken on a magic pill ride filled with placebos and snake oil. I want those 4 years back.
Third - Take care of yourself when nobody else will. From checking my own diet and looking over ingredients, I was in control of how severe my flare-ups would be. No one can take care of you like you. And as an addendum to this, make sure to treat others well because you have no idea what they’re going through. When I got my ostomy bag, the doctors told me that there are plenty of people walking around with them right now and, just like me, you’ll never know who they are until they tell you. UC was a physical condition but people didn’t always see what happened with me and you don’t always see what happens to other people. Again, just be good to yourself and other people.
And with that said, I’m taking a week off to recharge. I completed two writing series in less than 3 weeks and I need to relax. Or not. But I’ll be back. Thank you for reading along.
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