How I Got Here

I am 34 years old and have had interesting last half of decade. In 2006, my mother passed away of cancer. I started grad school two weeks after she passed and ran, like a hamster in a wheel for the next two and a half years. On the euphoric side of things, I was married in August of 2008 to the man of my dreams and MORE (there is simply NO WAY I could have dreamed of the level of support, understanding and care my life would require from my partner in such a short time).

As I neared the end of 2008, as the need to run in the hamster's wheel seemed to be lost on me, I started to notice I wasn't feeling so well. In November 2008, I was diagnosed with Crohn's disease. As my mother was home on disability with this disease since I was four years old, I can't say I was too surprised, but I was still heartbroken - I knew how bad this could get. Then, as new non-gastro symptoms began to emerge, I stopped driving, began seeing triangles in my line of view and had to spend almost every day after work in a dark room with an eye mask on and an ice pack on my head praying for the pain, the pressure and spinning to stop. I began to see a neurologist and finally got over to my eye-doctor. On the first Sunday of June 2009, I was rushed to the ER, where I stayed for the rest of the week ultimately emerging with a diagnosis of Pseudotumor Cerebri, or Idiopathic Intracranial Hypertension after getting a spinal tap with an opening pressure of 60.

This diagnosis would lead to the true twists and turns of my life up until this point. The summer of 2009 was one of doctor's visits, visiting specialists, too many eye exams to count, headaches, exhaustion, dangerously low blood pressure and it ended with yet another emergency room visit. In the month of August my vision, improving up until that point, took a sudden turn for the worse - I lost color vision and everything was suddenly blurry again. On August 21st, my neuro-ophthalmologist looked in my eyes and started making calls - I needed an emergency eye surgery called an Optic Nerve Sheath Fenestration (ONSF), and, by the end of the night, I had one. It was terrifying, but it saved my sight. By the next morning I was already seeing better on the eye exams.

However, like the obstinate, work-a-holic, fool that I am, I returned to teaching a week later. I refused to allow this disease to take me down. So, instead, in the school year that followed, I did that myself. The 2009-2010 school year was, by far the worst of my teaching career. I missed 27 days and lord only knows how many more I should have missed. I can now admit that I made a tragic mistake by not taking at least a semester, if not the year, off to recover.

By the Spring 2010, my colon seemed to get a little jealous of the decreased amount of attention it was receiving ever since the IIH/PTC arrived on the scene. From April 22 through the end of May, I came down with Antibiotic Associated Colitis from the bacteria clostridium difficle (c. diff.) and, beyond everything I have already gone through in my life, I can honestly say I never felt as bad or as close to death as I did with that condition.


I decided work was not worth it, because I obviously wasn't up to doing my job the right way anyway. And I decided that I was living in a completely unhealthy way. I also decided that I should stop thinking I knew what the heck I was doing...

I decided to change things.

The changes:
  • go to a nutritionist
  • take a medical leave from work in the Fall
  • de-stress
  • redefine myself, and ACCEPT the "new" me - she is not less than the old me, just different
There are probably a whole bunch more that have happened along the way, but these are the biggies. The last one was the hardest one and took the longest to accomplish (I am still doing it...), but just understanding that I needed a new definition of self and that my husband could love that me as much as the old me, and that my family could still love me and my friends still accept me that way, well... that was a lesson I needed  to learn.

Now there doesn't seem to be as much drama and my path to healing has finally opened up before me. I don't know how far I can go to get off these drugs and live possibly as a healthy "new" me, but I guess this blog will tell how far I can get... Let the journey begin!