The Good the Bad of my Life With Stiff Person Syndrome

So last night was the benefit concert at Old No. 2 it was a great turn out. With out my cousin it would have never turned out the way it did. I'd like to thank all the people who went and as well to you know who for doing what you did. Never expected it in a million years for you to go although I wished you could have stayed. All the bands that played where amazing! Enjoyed the whole event even though I had to keep a close eye on a certain person to make sure she would go all crazy/postal like always lol you know I'm kidding! love you girlly !

The plate sale turn out was great! Most of my family showed up from out of town and the ones from Laredo, so did some of mine and Vic's friends showed up to help. It's great to know that I've got my family and friends supporting me. We sold all the plates, some sodas, waters, and for some people who shall remain name less even sold them self lol. jk! Any ways it went great! I can't believe we were able to pull it off.

So today is the Steak Plate sale my family and friends are throwing in order for my mom and I to be able to attend the Mayo Clinic this summer! I'm suppose to be asleep at the moment, but since all the hype I just cant see myself falling asleep! The support from the community has been beyond super! Family from all over Texas is coming in to help out today and are starting to set up as we speak... Last night my friend Ashley and I stayed up doing poster, t-shirts and all these little details that had to be done so everyone wouldn't have to stress. Oh my if it wasn't for some of my friends and family today wouldn't have happened! There support has been tremendous! Not to mention the fact that the local News Cast show a bulletin about today's plates. Oh do I hope its a success I don't want any burden on my family! As much as I give them now its crazy how they are still by my side ! I cant complain one bit... and with their straight and courage is what keeps me...

Hey you band students remember that! Well today I went to the band hall after Mr. Duran gave me the opportunity to talk to the students about Stiff Person Syndrome. The reason I was mostly there was to show awareness to what this disease really is, and how it effect my life and people like me. Also Mr. Duran wanted me to go in order to ask the student to help me reach my goal to get to the Mayo Clinic. I'd like the say the response was wonderful the students were receptive of what I had to say. Some weren't even afraid to ask question... including how do I go to the bathroom. Crazy HUH?! But I answers honestly because I wanted them to know that this disease effects a lot of things not just what they read online and in books like some doctors think! I was so excited to be able to see all these young faces... hehe young faces I'm just like four years older, but in all reality some of these kids had never put a face to a disease in there life and for them to now be able to do...

So right after being told I HAD to go to the Mayo Clinic my family went in to HOLY CRAP mode! How the heck are we going to get there!? How's going to pay for everything?! Does the insurance cover everything?! ALL THESE QUESTION! But with the quick reaction thinking between my cousins and aunts they came up with the idea of a steak plate sale and other crap ola! Everyone starting throwing ideas after ideas of how to get things, how people donate things and how everything works. Finally we got a cheif and the indins started to follow! lol. So everything is planned for April 24, 2010!

My mom calls my neuro doc. and right away they see us. She is amazed at the fact that she wasn't called because if it was for her I should have stayed there. She ran blood work and gave me a steroid boost. Since I had just had my IVIG a week prior. Afterward she said she wanted to see me the following week and begin pt right away. Following week, I started school and didn't know what to do. I emailed all my teachers who were some what understanding. Yeah NO! To let them know the situations that was going on. Since most of my classes where online I didn't have much to worry about except my A&P class, but at least he was the one and only teacher that understood. So the week started and so did pt evaluations, more doctor's appt. and extra treatments. AGH I was starting to go even more crazy then I already was! jk. My neuro started me on a new medication called Keppra that's suppose to be for seizure but seems to work for spasms as well. Did good for a while. My mom...

I started to get ready for school, which meant having to see all my Docs. before school starts to make sure I have the OK! PCP was first... Everything looked good heart rate a little high, but she said nothing to worry about. Endocrinologist was second... Blood work came out so so... sugar where getting better, but not great! Allergist came in third... Lung where OK she wanted to start me a new medication called Zolar for my allergies and to improve my lung function. Exam when OK just with my heart rate going crazy again! She took a note of it and sent it to my PCP. Then Last came my neuro... Spasms were OK kinda... medication was starting to work better so she gave me the all clear! Finally got registered for school and got ready for a long semester... Who would have though long would be the understatement of the year. Once school started I had the regular mumbo jumbo about me being and getting sick which got straighten out with one phone or letter cant remember from my PCP. Classes ...