Unseen Illness
By Abby Cross
It’s hard to have an illness that no one can see. September 8th was the beginning of a very long, very difficult, three months. It all started with a headache. I didn’t think it was anything major because everyone gets headaches, right? It started while I was in my 8th hour class while I was watching a video. I went home after school to take a nap, hoping it would be gone when I woke up. The headache was still there though, three hours later. I tried to do my chemistry homework, but it was just too hard to focus. I took some advil and drank a ton of water thinking I was just dehydrated. I went to bed that night with my head still raging.
When I woke up the next morning, I could tell it was worse than the night before. Upon opening my eyes, my head exploded with pain. The light intensified the pain like crazy. I later learned this is called Photophobia. The light sent sharp pains through the back of my eyes. It even hurt to move my eyes to look around. I spent the day with sunglasses on, laying in my room with the lights off.
As the days went on, I attended multiple doctors appointments. They did an MRI, a CT, blood work, and a Lumbar puncture. The results of all of those tests were negative. The only sign that anything was wrong, was that my white blood cell count was very high. Other than that, they couldn’t find anything suggesting what could be causing such horrible headaches. The headaches persisted. I couldn’t tolerate being vertical or standing for longer than five minutes before I would feel sick or like I was going to pass out. I went through spells where I couldn’t eat or sleep; though somedays, all I could do was sleep. Other times, closing my eyes intensified the headaches and made me feel extremely dizzy. I started noticing the vision loss in my left eye. Soon, I had no peripheral vision at all.
My doctors decided it was time to let Children’s Hospital in Denver try to figure out what was going on. They decided it would be the fastest if we went in through the E.R. but I still think it took forever.
After being evaluated, they decided to admit me into the hospital. I stayed on the 8th floor for three days after that. The doctors at Children’s decided I had really bad migraines. They treated me with what they call “migraine cocktails” which was usually a combination of three or more medicines. They tried six different “cocktails” but all they did was make me fall asleep. They didn’t work.
After trying all of that with no luck, they basically said it was all in my head. They sent us home with no answers and with me feeling as bad as I did when we walked in. By this point, my parents and I were both very frustrated and stressed because no one seemed to be listening that something was wrong.
Upon arriving home, the doctors here were furious that Children’s did nothing to help us. They decided to put me on VERY high dose steroids. They figured I didn’t need to be admitted to the hospital so I did outpatient infusion through the Cancer Center. I lived with an IV in my arm for a few days in a couple different sessions.
I went to the Cancer Center three times a day for three to five days each session. The first session was steroids but the second and third were just fluids to help flush out the steroids to run more tests because more symptoms started showing up.
From my standpoint at the time, I figured the steroids would just take the headaches away and I would be all better. But that is not what happened. They made me feel horrible and I began having problems with the vision in my right eye. I lost my peripheral vision in this eye as well. They decided it was time for me to go see an opthamologist in Greeley who was very well-known.
He told me I had Optic Neuritis; he just didn’t know what was causing it. He said based on what he saw when he looked in my eyes that it was possible I has Multiple Sclerosis (MS). Hearing this was terrifying, but it was kind of a relief to know that there was something there. After they ran blood work on it, they found that was not the cause.
We went back up to Children’s to a neurologist. They ran more blood work and did a Vascular CT. They still found nothing.
By this point I was done. I was done with doctors, I was done with being sick. I wanted to be back in school and I wanted my life back. I was so over being home 24/7, only getting out to go to doctors appointments.
Overtime though, everything started to get better. One day I woke up without a headache or eye pain. It’s crazy to say but that was one of the best days I’d had for a very long time. Slowly my life started to return to normal.
To this day, I am a little over a month headache free. I take each day as a small step to getting my life back on track. We still aren’t sure what caused the headaches or why they were so bad for so long. I can definitely say I am very glad it’s all over.
When I am asked “What am I most afraid of?” before all of this, I would say snakes orspiders. But now, I say headaches. This whole experience was scary, and definitely not something I want to repeat.