April 5, 2024
I alluded to my chronic illness in my blog main page. Since I was about 7 years old, I have had almost daily nosebleeds, massive bowel bleeding, migraine headaches, and anemia. I have had weekly or monthly bloodwork since I was 7, and monthly or multiple surgeries per year for nosebleeds. I have had 2-5 bowel scopes every year since I was 8 years old, and 5 major bowel surgeries, where the same 10-inch incision was opened.
When I was 19, I was diagnosed with HHT: Hereditary Hemorrhagic Telangiectasia (see how ANGIE is right in the middle of telANGIEctasia?!?!), and I have the gene mutation on the SMAD4 gene, which also causes JPS: Juvenile Polyposis Syndrome. I had my entire large intestine removed when I was 9, and my rectum removed when I was 19. That summer, I had an ileostomy, and what an experience that was! That was hard to deal with mentally, as there was a 50-50 chance I’d be stuck with a permanent ileostomy if the surgery didn’t go well. Thankfully, the ostomy was able to be removed. I’ve had 35-40 surgeries for all types of surgeries for nosebleeds.
My mom was always encouraging me to be positive and focus on the good stuff. Growing up, all I wanted was to be at school because I loved school. I was home a lot, recovering from surgeries and procedures, or I just wasn’t well enough to go. When I was able to go to school, I was so hyper and excited to be there. I annoyed a lot of people, as I was “too cheery” and said “Good Morning” to too many people (actual comments from some classmates). I just wanted to be a normal kid. Fast-forward to now, and I am a teacher with 20 years experience in special education and regular classroom settings. I still feel the same: I just want to be normal. Three years ago, my dad died, and then my dog died, 3 months later. I have been in counseling since, and it usually comes back to my health. I hadn’t dealt with most of my health anxieties & procedural traumas. I always cried when I went under anesthetic, or when I was getting an IV that turned out to be tricky. For the last 2 years, for each surgery, I have not cried, and have only cried during an IV maybe twice. I have been working so hard on accepting that I have limitations. After much consultation with my doctors, I now know (and accept) that I no longer can be a classroom teacher. My body can’t handle the intensity and workload of the days at work, the hours of planning and marking at home each night and on the weekends, and the stress of new curriculums, and new and increased expectations on teachers. I am on disability from my job now as I was so ill, I couldn’t be at work. I have had 2 surgeries, monthly bloodwork,1-2 infusions per month, and several procedures since I’ve been off.
We will see what happens when I am able to go back to a job… I hope to stay with my board in a non-classroom role. My doctors think I should not work in a school anymore, due to the fast-pace and high risk of germs. I spoke to my doctor about taking some online writing classes, and he was supportive that I do some courses while I am off work. My goals are to write some health memoirs and perhaps a children’s book.
