My Journey

If you have read all of my posts, most likely you remember I was diagnosed with Amplified Pain Syndrome my junior year of high school. Now that you have some background knowledge I can tell you all about my journey that got me here today!

When I was a child I was always sick, around the age of eleven I had numerous sinus infections that were causing bad headaches. Until I was 14 years old my doctor, Dr. Dove, thought I just had really bad sinus inflections. But then she made the assumption that I was getting bad migraines and it was not my sinuses.

I started having horrible migraines a few times a month, and when they hit me I was out for at least a day. As time passed I began having migraines more often than not. When I had a migraine I would stay in a cool dark room and not come out until it was gone.

You can imagine how bad that would be since all I ever did was sleep, so when I had a migraine I always ended up getting dehydrated.

By my sophomore year of high school I made it to school two out of the five days IF I was lucky. I was in and out of the hospital being pumped full of fluids and a new concoction that doctors just knew would be the trick to get me better.

I was scheduled to see my migraine specialist, Dr. Katz, once a month to catch up on how I was doing. Sadly I saw him or my mom spoke to him more than once a month because he would send me to the ER when I couldn't knock out a migraine.

Dr. Katz had me on a gallon size baggy FULL of medicines to prevent, get rid of, and reduce pain. For what felt like forever, I was on a muscle relaxer twice a day. That was the only medicine that really screwed me up and everyone hated it. The muscle relaxer made me very hateful because I was in pain, always tired, and I was sick of being sick.

That all happened in the fall of my sophomore year, then January rolled around and right before I was supposed to return to school from Christmas break a migraine knocked me on my butt. Dr. Katz had my mom bring me to Topeka's Stormont-Vale Hospital so he could be there to treat me.

My doctor said to pack clothes for at least three days, because I wasn't leaving that hospital until I was better. I was treated with D.H.E. 45 (dihydroergotamine mesylate) once every four hours. I was there for five days... I came in with a migraine of ten on the scale of one to ten, ten being the worst. I left the hospital at a four, even though I wasn't completely better they sent me home anyway. I had to be taken off of it because it was getting extremely dangerous for me to have that much D.H.E. 45 in my system.

I have to say that was my lowest point in my life and I was so scared because my body started out with just pain in my head but ventured down to my neck, back, and hips. I had several MRIs, CAT scans, and X-rays done to try to figure out what was causing a 16 year old so much pain.

Eventually, my primary care physician talked to a friend of her's that works in Pain Management at Children's Mercy and I was referred and scheduled to meet with Dr. Hoffart to see if I had APS.

The day I met with Dr. Hoffart and her team, my life changed forever. Although I am not "cured" from APS because you are never completely cured, I am in a better place than I was in high school. I am so thankful for where I am today, I couldn't have done it without my mom.

Made by Bayli Milleson on http://www.abcya.com/word_clouds.htm

So that's my crazy life! Over the course of these next four months you'll learn all about APS and the daily struggles that someone with APS goes through.