Thursday, June 4, 2015

Facing My Mortality & Limitations

I was not sure why I started a blog. Mostly I want to focus on education, as that is my passion; however, from time to time, I may foray into a little self-indulgence by writing about personal issues. I do not look for pity or sympathy (I know others are much worse off than I), but sometimes writing and pushing it into the ether can be cathartic.

In my almost forty years, I have dealt with three autoimmune diseases: psoriasis, Crohn’s disease, and lupus. I had psoriasis as a child. It mostly went away, except for a few spots, after about a year. When those spots would appear, I used lye soap directly on them for a few days, and they went away. Mostly, psoriasis was a disease that affected my vanity: it could be embarrassing, but wasn’t life-threatening. That almost completely went away in 2004, the year I was diagnosed with Crohn’s.

Crohn’s disease is your immune system attacking your digestive system. It can be debilitating and life-threatening. I have had stress-related stomach issues for much of my life, but in 2004, I hit a new low. My weight hovers around the 115-125 range, but that summer, I lost 18 lbs. and went down to 97. Over the course of the summer, I was tested for Lyme’s, West Nile, Rocky Mountain Spotted Tick Fever…everything but the plague. I was finally admitted to the hospital after two days when I couldn’t even keep down water. As I lay on the table in the doctor’s office, I felt myself floating above my body (probably because I was so weak and tired). I really believed I was going to die. My only regret was not being able to finish raising my daughter, who was six at the time). I wanted to give up, but hung on for her. Several tests later, after a phone conversation with my father (a nurse), he mentioned they should test me for Crohn’s. Yes, my father was correct. I credit him with saving my life because we were getting nowhere with other tests.

I unsuccessfully lived with Crohn’s for a couple years before I found a fantastic gastroenterologist. I was cutting increasingly more food/beverages from my diet and not improving—while continuing to teach. He told me there were medications and a possibility of remission. Finally, a spark of hope! I kept a few foods out of my diet, but began returning to normal. My last colonoscopy was in 2013, where my doctor told me I was about 90ish% in remission.

Sadly, I was already dealing with some weird symptoms (that I had no idea were part of a larger issue) from about spring 2012. I was getting red spots around my eyes and my voice would get husky off and on. My general doctor thought it was allergies and gave me steroid cream and pills. Those helped some, but not really. Throughout the 2012-13 school year, my hands and wrists began bothering me—usually just a “perk” of being an English teacher who grades piles of papers and types a lot. I worried about carpal tunnel, but (like all other health issues when you’re a teacher) that would have to wait till summer. J Summer 2013, I also began having shoulder pain, sometimes so bad I couldn’t sleep or drive. My doctor basically gave me a standing prescription for Prednisone and trusted me to self-medicate. As I HATE taking medicine, this was a good idea on his part and saved me money on co-pays.

Through 2013-2014 school year, my hands and other joints continued to worsen. I finally saw a rheumatologist. She first bet me I had a wheat allergy (I won that bet), then moved to arthritis, for which I always tested “negative.” She started me on methotrexate, which barely worked for me. I even got to do injections for a few months. For someone who used to have nightmares about needles as a child, this was an act of courage. Yes, I made myself do my own injections. I have always fought being a “burden” to my family.

When my rheumatologist left her clinic, I chose to find a new one. I found a wonderful doctor at the Oklahoma Center for Arthritis and Research. Thank you, Dr. Z! She has worked with me to find what’s wrong and to treat it. She also told me when someone has one autoimmune disease, s/he is more likely to get another one. She got my records and decided to run some more tests. I still dread needles, but I am getting good at letting people poke me (especially when I usually have 5-9 vials of blood taken at a time J). I think it was my second appointment when told me I’d tested positive for lupus. I wasn’t sure how to react: I’d heard of it, but I knew little about it. I immediately began educating myself, including all the horror and success stories. She and I have tried several paths, including many natural treatments, and have settled on Plaquenil (medication for malaria, which carries its own toxicity risks) and Benlysta (a once a month infusion which suppresses my immune system, leaving me open to other illnesses). I just started Benlysta in January 2015.

I finished off 2013-2014. Thank God for my students. For a while, my feet were too painful to do much walking and my hands were so swollen and painful I couldn’t hold a pen, making grading nearly impossible. They helped me come up with creative solutions for grading and feedback. They were patient when I took months to return research papers—something I normally grade extensively with copious feedback. They wrote notes for me when I couldn’t. When I was so tired and in pain I couldn’t walk around the room as I normally do, they came to me. They forgave me for my limitations—not that they thought I needed forgiveness, but I sure apologized anyway. My students are such beautiful and amazing people. They worked and met my every expectation even when I had to miss class. I could not have made it through this without them and the community of Sperry.

We relocated to Oklahoma City in June for my husband’s job. Thankfully, I was able to take a year off to deal with this crappy disease. I didn’t want time off, but I had to. I have found new strengths, but I have also discovered new weaknesses—dark places to which I don’t like to admit. I am a driven person, a person who was born to educate. Not fulfilling that role or earning money or positively contributing to society was a major blow. I have done some type of work since I was ten. I am a horrible sick person, plus I deal with depression, which can be exacerbated by lupus. Yes, it hit me like a ton of bricks this winter. Insomnia coupled with depression is an ugly place to find oneself. I have some ugly thoughts scribbled on scraps of paper hidden in my dresser. Thankfully, I wasn’t suicidal, but I did flirt with the monster.

I believe God found me a job at Piedmont. How often to AP positions open up, especially at such a competitive school? I am so excited to head back to the classroom (now Oklahoma has 799 positions open instead of 800—sorry, bad joke). If God provided this job, He will help me, but I cannot help looking at my mortality again. Lupus has so many possible symptoms: crippling fatigue and “arthritis” are my nemeses (I have also had to embrace a vampire lifestyle since I’m hyper-sensitive to the sun, and the sun can cause flair-ups). Fatigue is especially frustrating to someone like me. For example, I was busy with meetings from 9-noon today. By the time I got home, I wanted a nap. How in the hell am I going to be able to teach? I am also an introvert who already has to have alone time after spending the day with people. How am I going to cope? But, how can I cope if I don’t go back into the classroom? I worry I will have to use so much energy and effort to simply get through the day that I will not have enough left to give my students what each of them needs and deserves.

I have to be real and look at myself in the mirror and admit I am not a superhero, I am simply a human being working to overcome the seemingly insurmountable in order to better society. Now, does someone have a radioactive spider or toxic waste I could use? Maybe I’ll discover those superpowers…


  1. Hi, I found your blog through #oklaed tonight and wow, we have similar stories! Long story short, I'm a teacher with RA. I've been though several meds and they all fail. Right I'm ok, a steroid shot and Xeljanz have me closer to normal than I have been in years. Keep fighting and keep blogging.

  2. I feel your pain--pun intended. :-) Thank you for connecting. Sometimes chronic pain/illnesses force you to be "selfish" (as you take care of yourself) and makes you feel alone. I appreciate knowing there's another teacher warrior out there! Keep fighting!