Saturday, December 28, 2013
It's been awhile again, I know. I apologize. The drains of work at times, more frequent than not, are overwhelming. With changes and added responsibilities requiring later nights periodically and the fear of increased frequency has been wearing on me.
I remember my health struggle just to work. My doctor told my parents when I was a child I could apply for social security disability and I'd have a good chance of approval. My parents never did, they wanted to see what I could handle first and knew even if I had to one day, I may still require their assistance throughout life. And so that's what we did. I tried my best and they helped me along the way. And with the help of my schools I made it through that struggle. Sometimes having to be homeschooled others home study with the public school. But I made it through. And I made it through college in spite of a minimum of two hospitalizations a year. My next challenge was a full time job. Would I be as fortunate?
I worked for six months, that's all my body would allow after school as it threatened to send me back to the dreaded hospital. I was so scared for my health and if the future. The stress caused severe SBS, reminiscent of the SBS struggles in high school when my life was nothing but restrooms, pain, and ever looming death. The time when I felt death's hands on my shoulders and I felt urged to prepare my parents they were losing their little girl. I could see all this once again on the horizon. My parents agreed I had to stop, they would help me. Just after a few weeks away from that first time employer, I felt my health returning. I wanted to try again. Maybe it was the job, the employer or that it was my first full time job and I had yet to develop the right coping for this arena. I'm not sure, maybe it was all of it. But I tried again and I did better the second time. I didn't have to travel anymore and for awhile my employer was supportive and helpful. Even when it became hostile and I was overwhelmed with depression, my body withstood all the stress being thrown at it. I was amazed and relieved! Maybe I do have a fighting chance after all.
And so I've been with my current employer a few years now. I still have bad days that my body warns me to take easy and so far I've been supported. But that fear always remains. What exactly is the limit, when will I be pushed too far, when will my body rebel and force me to that dreaded hospital again? I don't know, I don't want to know and so I keep my guard up and I try to protect myself from myself.
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.