Always the Student

***Written November 20, 2013***

Hello readers! Hope all of you are well where ever you are in the world. I went to school to be a teacher, even though right now I'm not working as a teacher. I may not always be a teacher, but I will always be a student. You never stop learning new things, and frankly I never want to stop learning new things. I the last 8 weeks, I have learned more than my little brain can hold, but I'm grateful, for every little piece of knowledge and experience that I gain. It means I'm still alive and human...or somewhat. My close friends tease me that I have turned into a vampire, and that is fine. I love humor, and without it I think that I would lose my mind. However, I have to say, if given the choice between the type of vampire that sparkles in the light versus the type that burn and die in the light...go for the sparkle kind; it's so much more fun! See, even sick I still have humor, and I try very hard to keep a good attitude.

This week I have learned many things. I've learned that to my close friends and family I will always be beautiful and loved. I am funny and good spirited and when challenged I will rise and fight. I love a challenge it keeps me on my toes. I've also learned always be prepared and expect the unexpected, you never know who or what lurks around the corner.

Living with SU has taught me all of this and continues to teach me daily. I'm learning my limits and what I can and cannot do, and even though I get knocked down sometimes, I always get up and dust myself off and try again. I'm learning that even with my limitations I can still have some normal stuff in my life. So, I'm still trying to remain active and stay in contact with my friends and family as much as possible. It keeps me centered and keeps me going. One of the hardest parts of living with an allergy to light is not getting depressed and not withdrawing from society and the world. I've always had a close group of friends. I wasn't uber popular growing up. I was a band geek and had band geek friends, my close friends then are still friends now. My close friends from my twenties are still my friends now that I am in my thirties and nearing 40! My family is family and has always been there and God willing will always be near, and a part of my life.

Recently in the last 8 weeks I've also learned that no matter how crappy I feel I must get up, shower and get dressed; even if I'm just sitting around doing nothing. Always at least get your body moving in the morning. You'll feel a whole lot better. I'm also learning how to be physically active and not be a slug. With the fact that I used to be very active, always on the go or heading out to the gym 3-4 days a week, this is a struggle for me. I haven't gained any weight. In fact my clothes fit better now and I've lost 10 pounds, but I've also lost muscle mass and I'm jiggly. I don't like it. So, I find myself trying to walk the basement stairs, or wandering around the house dusting or cleaning. Fortunately, I live in a pretty safe neighborhood and have a big dog that likes to go for walks. I've been trying to walk after dark or play outside with  the dogs after dark. Since winter is coming I'm not sure how long that will last.

I'm also learning my limits still. I live day to day and I feel like an experiment. Some days are awesome and I feel almost normal and other days I'm exhausted by noon. On those days I curl up with the puppy dog and we nap. She loves it too because she gets time with her mama. But, beyond the physical limitations, what this has taught me is that I'm loved and it has taught me to give back to others as much a possible. Be kind and don't judge others for you don't know what journey God has given them to travel. So, if you're having a bad day, take a moment and clear your mind and step back and breathe. Sometimes that's all you need.

Next week I'll tell you all how my trip to Detroit went. (*now this week, since Ms. Buffy is a slacker*) Hopefully I'll come home with more answers than questions. I'm having photo patch testing done on Tuesday and Wednesday. They are going to test me for allergies to UVA, UVB and visible light. I will be meeting with Dr. Henry Lim, and I've heard he is wonderful and has a lot of experience with PMLE and SU. Beginning today I'm tapering off all meds so that the test will be accurate. That;s the scary part, but I'm armed with Epi-Pens in the mean time. And saying prayers for safe travel and not complications.

*This was typed in late due to a loss in Buffy's family, she is not really a slacker :)*