Sunday, June 30, 2013
Surreal
It's been so long ago, the medical tests and procedures, the surgeries and the struggle for life. It's been a lifetime ago but it doesn't always seem like my life. I have to remind myself that it was my life and not someone else's life. I feel like I'm looking through a looking glass, peering into someone else's memories and past. Not my own. And yet it is mine. Every horrible moment, every joyous cause. It's all mine.
I never thought the terror and the battles would fade so much. They don't occupy my mind all the time anymore. I remember everyday but it's just in passing. When my stomach rumbles, when I have to run to the bathroom, when I'm sore. But it's only brief reminders. Even when I have flare ups, it's just for a night and I can forget the next day. No more constant reminders and complete worry about what I'm eating or what I'm doing. I still feel concerned but it doesn't consume me anymore. How has this change happened?? I've become so far removed from it all. I have my regular check up every three months but I don't have anymore medical tests or procedures. Not even routine. I should have an annual scope but I haven't in 5 years. My doctor knows I'm not budging on this one, I'm not going through the torture of laxatives and enemas. Find another way, I'm not doing it. That's how. I haven't had to go through pain and torture in five years except for flare ups and 1 CT Scan with dye. I'm not being forced to relive the nightmares. I've been granted a pardon, even if only for a short while.
I have to make myself remember the details of those awful years of pain and struggle. It doesn't seem possible that it all happened to me. That it was me going through it all. I swear it happened to someone else, not me. Why are people worried about my health? I'm fine, that wasn't me. But it was. It was me. And they remember. They remember the countless hospital stays and trips. The never ending medical tests and procedures. The need for another surgery. The fear and worry in the doctor's face, the nurses, the surgeons, the team of specialists. The terror I expressed, my screams and cries. My pleas for it to end, to let me die. They remember.
Once I'm thrown back into the medical den it will come flooding back and I'll be consumed again. But for now, for now I've been given mercy.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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