Mixed Feelings

December 4, 2013

Hello my readers! I hope your Thanksgiving was a great one. I had a pretty good one. It was the most relaxing day of the week. My wonderful husband made a beef brisket in the smoker for the first time. My brother's birthday was also on the 27th. I made sure to call him since I was in Detroit.

Speaking of Detroit, I made it there and back in one piece with thanks to my chauffeur and bestie, Buffy. It was actually a good trip even though it was a medical trip. I made two new friends, Katrina and Wally, who are amazing people and I thank them dearly for letting me crash at their place and live in the dark for two and a half days.

So, the trip to Detroit was so I could have photo patch testing completed and get some answers to my condition. I got answers and I have mixed feelings about hem. I'm happy that I know what the issue is, but I'm concerned/angry/sad about the results. My doctor was Dr. Henry Lim with Henry Ford Health Systems and he is wonderful. Very good bedside manner and an awesome person all around.

So what they tested me for was allergies to UVA, UVB and visible light. As it turns out I have Systemic Solar Urticaria, and I'm allergic to UVA light. In fact, the UVA light was the last test and I was so allergic I didn't even get all the way through the test. I ended up having an allergic reaction that was severe enough to have them observe me for an hour after the office closed and required immediate antihistamines. They thought they were going to have to use my Epi-pen on me. Super scary, and I don't want to do that again.

So, it's official...I am a freak or a medically proven vampire. I'm allergic to sunlight and artificial light both. This leaves me with a total and complete life style change. I'm relieved to know what's wrong with me but truthfully, I'm scared to death about my future. I cried for 3 days when I learned this is permanent and I pray. I pray a lot for many things. God answered my first prayers when I needed to know what was wrong with me. Now I pray to give thanks for faith, for health, for understanding, and for peace. But most of all I pray for a miracle of total healing. Miracles happen everyday and one day I will be healed whether here on earth or in Heaven.

After my three days of feeling miserable for myself I got up and dusted off my big girl panties and said, "okay, my life will never be the same." So, what do I do now? I learn ways to cope. I learn how to live as healthy as possible for as long as possible, and remember it could be worse. Yes, this is debilitating but it's not the end of my world. There are people out there who have it much worse off.

At this point there are two treatments available to try to control my system and get me living some what normally. Depending on how controlled I am, I may be able to return to work, but only time will tell. I'm praying for the best possible outcome.

As I figure out how to cope and live daily I will share what works and what doesn't work. I will share my fears and my joys, and even my adventures. My goal is to live as normal as possible and as healthy as possible. I don't want to withdraw from society or lose my friends and family. One of my biggest fears is being alone and losing contact with people. You really do learn who your true friends are and who loves you.

I always try to remember that God is in control and we may not understand why things happen but we need to have faith. Until next time, take care readers!