song writing

All my life I have loved music. About 20 year ago when we where up at JohnsHopkins, my dad was like since you know to all these songs why dont you become a song writter. And that has always in the back of my mind. If you have been following my blog you know I want to be a song writter. I have been writing for a few months and now I need help rearranging the words and putting music to them. If you can help in any way please email mail or facebook me.

friends

When I was in elementary school it was easier to make friends before I was in the wheelchair. In middle school and high school it was harder to make friends, because most of kids saw me in a wheelchair and thought I was different, it was also because I have a shy personality, and it was hard for ME to overcome being in a wheelchair, and having motor and speech problems. Over the years, I still have contact with a few of my friends that grew up in my neighborhood. A couple of them have moved out of state, but we still have contact, and I cherish there friendships. Facebook has also helped me reconnect with old friends. Since I don't go out socially with other people my age, it's hard to meet new friends, I guess finding a boyfriend is going to be pretty hard. As embarrassing as I feel it is, I'm 27 and never had a boyfriend.

ER

I ended up in the ER last weekend, my chest pains got worse and I had a low grade fever, after 5 hours there, they said I had very low potassium. They gave me 2 potassium pills , then started a IV with Potassim. OUCH--------------potassium really burns going in. The nurse had the IV rate too high, someone else came in and lowered the rate, but it still burned too badly, so they stopped the IV, then they gave me 2 more potassim pills and sent me home, telling me to see my regular doctor. The low potassium is probably from all the diarrhea I 've been having, I started taking pancreatic enzymes to help with that, maybe I'll be able to get up tp a whopping 95 lbs, only 10 lbs to go, but I've been trying to gain the same 10 lbs for 10 years now!

Dr. Oz

Today while at the Drs. office, the nurse asked about the Tattoo I have on my leg that says AT with cure and hope on either side. She had never heard of AT, (surprise) so I started to fill her in. She mentioned that I would be a good spokesperson about AT. I let her in of my dream on being on DR. OZ. I'd like more people to know about the disease, but I think it's just as important to let people know there is life after the diagnoses of this disease.

medical update

My attempt to gain weight has not been going very well. I have colitis that really acted up, it gave me severe abdominal pain, & I put in a lot of time in the bathroom. This caused me to go down from 87 lbs. to 82 lbs. within a month or less. If I was on the Biggest Looser, I may have won with a 6% weight loss! My gastroenteroligist told me to use Pepto Bismol 4X's a day, and it seems to be working, I've gained a couple of lbs. back. Once that started to get better, I was getting chest pain when I took deep breaths, this went on 2 weeks and I ended up at a Pulmonologist, who ordered a CAT scan and Pulmonary Function Test. Shortly after having the tests, I began to feel better. the pain went away completely. The Dr said both tests were OK, and he felt I probably aspirated something. It didn't block my lung, but probably irritated and inflammed them, giving me the pain.

traveling by myself

The other day I went out to eat dinner with a friend, She'll be going to med school on Grand Cayman Island. She asked me if I would ever be interested in going down there to visit her, but that's something I could never do by myself. Once I did go visit a girlfriend that lived around Washington, DC, I flew up there by myself, but she was there to meet me at the gate, and we stayed at her house up there. She helped me with whatever I needed. But it would be pretty impossible to fly somewhere and get to a hotel by myself. I am unable to push myself in my wheelchair, and I couldn't handle the luggage. Even taking a bath or just getting around a hotel room is pretty impossible.

shoes

Shoes are so hard to buy. Sneakers are hard because when you put them on my big toe curls up, and when you do get them on you have to get your fingers in there to straighten the toe. Sandals are hard because you can't buy the cute strappy ones because of the big curve in my feet. And with any shoe I take the risk of them coming off if they don't have straps or laces. Also with sandals I can't plant my foot so its like I'm standing on the sides of my ankles.