new wheels

I still have my old manual chair but I got a new power chair. The joy stick broke on my old power chair but t I had it for about 12 year so I guess I got my use out of it.

Epic cruise 2010

The first day of our cruise, while we were unpacking, my dad took out his dress shoes &realized he had brought TWO LEFT SHOES only. Bad start to the trip

When went to the muster drill, we actually ran into the Dr. that was my pediatrician for 20 years, and started talking about AT. He wanted to know if there were any new developments. Most evenings we had to go back to the room kind of early, because it was hard to sit in the wheelchair for more than a couple of hours, my neck and back always starts hurting

The nights we went to the live entertainment (Blue man Group, Second City, Legends) wasn't all that great, we actually enjoyed the smallest show which was a magician-comedian, named Jeff Hobbs .

One night my mom and I decided to go to a martini making class, but it wasn't really about making them, but it was tasting them. They made 5 martinis in an hour, I didn't like most of them, they were very strong. But however my mother did get wasted, I guess she liked them.

The day we stopped in the Honduras, my mom went on a shore excursion, but it started raining, and everyone headed back to the ship.

Another unfortunate thing was that I had stomach problems for awhile, and didn't feel like eating a lot some days. We went to Cagney's for dinner,& I had the best steak I ever ate, I was able to finish that, no problem.

We had an accessible cabin that was very nice, it had automatic doors that opened when you put the key card in, the room was plenty big to get round easily, and there was a ramp so I could get out onto the balcony. The bathroom had plenty of grab bars and a big, pulldown seat in the shower.

The last day, however. my luck turned around, I was playng the 2 cent slots, and I WON 110.00!

my AT is getting worse

my feet without braces

my feet with braces

Im having more trouble with my tremors, typing, plantng my foot on the ground because my foot is curving more and tendons are getting tighter. And its harder picking up pills and small items it's also getting harder for meto use silverware and weatting pasta but nothing is stoppping pasta.I'm starting to choke on corn and mixed veggies.

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.

mom's birthday

Every year we go to Tennessee but this year we wanted something different. So we finally decided on a cruise for my mom's birthday. My mom wants a 5-7 day cruise. I'll let you guys know what we decide, and I'll post pictures and little story.

heart burn?

The last few days I've been having chest pain but now its getting worse, so n0w the question is is it really heart burn.

IM BACK

Lately I have found a few little thing I want to do (post stuff on here and ebay) but I have no motivation. ALSO...........I'v been having stomach problems and were going to see the GI Doc soon so I might be blogging about that

office meeting

A few days ago my mom had an office meeting and she said sometimes she can't find a handicap parking place because of all the people using them who don't need them. So I scratch my car getting the wheelchair up to Courtney. A couple days later my mom overheard the doctor explaining it to someone.

TAYLOR SWIFT CONCERT

This concert was great. She had 2 opening acts Gloriana & Kelli Pickler. On a scale of 1-10, I give it a 9 or 10. Because technology, the lighting, the graphics etc. Towards the end of the concert they got more rockish After the concert we used the elevator in the basement and we made up in time for the encore we went back in the concert for the last 2 songs we noticed they even made the stairs on the stage look like waterfalls.

Brittney and her kids

Yesterday my friend Brittney and her kids came over. We were in the kitchen and Ray her son asked if he could use my motorized wheelchair and I said sure, because I don't want him to be scared of wheelchairs. I want him to feel c0mfortable around them.

dressing room

We went shopping last weekend, and I decided to try on some jeans, we were at a huge outlet mall, and we stopped in at the Levi's/ Dockers store. It was very busy and we got into line to use a dressing room, as we got a little closer in line, my mom looked in the dressing area and did not see an accessible dressing room. She asked the attendant where the accessible changing room was, and he led us over to the other side, he opened the door and it was full of furniture, racks, and general junk. The kid said he was sorry, but it was full, and can't the wheelchair fit into a regular room. I said no that the doorway was to small, and I wouldn't be able to close the door anyway even if it could fit in and the kid left it at that. My mom went to the front and asked for the manager, and said we needed the accessible dressing room. When he opened the door and saw it, he immediately started cleaning it out, with the help of other employees. I hope the manager clued in the other employees that it violates the American with Disability Act not to have a dressing room that can fit a wheelchair.

celebrities

I was watching TV and it got me to thinking about celebrities I'd like to meet, and anyone that knows me would say Mariah Carey. Also Jennifer Garner and Ben Affleck because of Ben's involvement w/ AT, also after I heard about him I became more interested in him. I'm sure everybody can name a hand full of celebrities they would like to meet so I won't start naming them. Recently I've been having dreams of meeting all kinds of different musicians from Mariah Carey to Taylor Swift and Shaina Twain, and asking them about song writing.

Jen's Biochem class

My friend Jen told me "they taught AT in Biochem "I asked if she learned anything new? She said "Exact Mutation and Enzyme that causes it .It was neat to see it pop up in the lecture b/c in my Doctor, Patient, Society class we were having a lecture on genetic diseases and my professor asked if anyone knew of a genetic disease where the symptoms dont show up until after birth. I raised my hand and said Ataxia Telangiectasia.Then the next day in Biochemistry, the last powerpoint slide was on AT."

12 things to do before im 35

1.meet Mariah Carey
2.go to a real party w/o any parents.....again
3.get married
4.no matter what my parents and doctor say i want to have at least one kid
5.become a song writer
6.move to Tennessee
7.get a job at DolllyWood
8. be a guest on the Doctor Phil or Doctor Oz show
9.go sky diving
10.go to the summer Olympics
11.go back to Italy
12.go on a cruise w/ my mom (DONE)

mouth sensitivity

Recently I've having more sensitivity in my mouth, on my lips, & on my tongue, I don't know if it's just me or it's the A-T. For example the taste of toothpaste has gotten to strong for me, spicy foods have gotten to spicy, & when I bump my lip on a cup or with my hand I check to make sure my lip is not bleeding.

the reason I'm writting this blog

I'm writting this blog because I want to let people know just because you are diagnosed with something doesn't mean your life is over. It just means things are going to be a little harder. Don't give up on your hopes and dreams.

Ambienland

I recently started taking Ambien. The weirdest things started happening after I take one, I would start stacking boxes at one a.m., asking my mom for lunch at midnight, and start talking about my scrapbooking, none of this I remembered. My mom told me the next morning what I was doing the night before. Thank God I can't get out of the house by myself in the wheelchair, or they might find me driving down the highway. It does help me sleep and the doctor did tell us stuff like this could happen.

MC concert

Last night I went to the Mariah concert. This is the 6th Mariah concert I've been to and this was as good if not better then the other 5. Even my mom enjoyed it and she's not a fan.

weight update

This afternoon we weighed myself on a different scale (we think it's more accurate than the last one) it weighed me at 87 pounds, my mom said now we'll keep using the same one.

AT web site

I know there are some readers that don't klnow what AT is so visit http://www.communityatcp.org/Page.aspx?pid=1504 to learn more.

my fight to gain weight

You would have to eat 3500 calories to gain a pound. I think the doctors up at Johns Hopkins said my tremors take up 1400 calories a day. So it would take me almost 5000 calories to gain one pound. So I'm going to try to drink bottle of Equate Plus (it's Wal-mart's brand of Boost) every night (sometimes 2 bottles it's a night) 350 calories for an 8 once bottle.
Currently I weigh an embarrassing 84 pounds and my goal is to get to 88-90 pounds by my birthday (Feb. 23).
Originally I said I wanted to gain 2 pounds before my birthday, so I'd be at least 90 pounds, because I'm usually 88 pounds..

YouTube

To see my YouTube videos go to
http://www.youtube.com/results?search_query=bocababe23&search_type=&aq=f

concerts

I'm very excited to be going to the Mariah Carey (Jan. 21st) and Taylor Swift (March 7th) concerts.

diagnosis

A few months ago I had a bone density scan because of the result of severe osteoporosis we found out I'm in the beginning of menopause. So now I take estrogen to try to reverse it.

At first I was a little embarassed to be in the beginning stages of menopause, then I found out a few other people with AT that are my age have it.

high school-2009

Hershey Park in Pennsylvania

river rafting in Tennessee

grad nite 2001

Paris, France

Versailles

21st birthday

21st birthday

21st birthday

Venice, Italy

Venice, Italy

Tuscany Italy

Tennessee

in our flying suits

I'm flying

High School was pretty much the same as middle school, but a full day was very tiring. My school was good at accomodating me. My lesson plan included time for me to lie down to relax my back and neck, which often were sore and to take a quick nap so I could finish the whole day at school. I also had shortened homework assignments. In high school I had even fewer friends, I had a few friends in a some of my classes. But most of the kids wouldn't talk to me. Most of my friends were the teachers and a group of the ESE/SLD kids. Some people said senior year would be the best year it wasn't. The only thing that kept me going is the promise that my parents would take me to France after gradution. When I went for my Senior class pictures, I thought it was so funny that the photographer complimented me on my beautiful hair, because I was still wearing a hairpiece. I should have told him he could have the same great hair for $24.95 at Sally's Beauty Supply.
Maybe I still can't ride a 2 wheeler, but I have reliable wheels to get me everywhere I want to go, they have been with me coast to coast in the US. I love Las Vegas, and went there for my 21st birthday with my Mom & Dad, grandmother, Aunts and Uncles, my cousin Jess, and my friend Colleen. My wheels have also taken me to Canada and Paris and Italy, and I plan for them to see more of the world yet.
I realize that I am very lucky compared to some of the other kids with AT, because even though we have the same disease, we can have different degrees of symptoms. I"m very thankful that I haven't had any serious illnessness and can still get around to do things.
In September 2001 we went to France. We flew into Paris then we took a train to Nice for a few days. When we arrived at the train station in Nice my mom dumped me off the curb.The first night we went down by the water for dinner, and we tried to walk back hotel after dinner and we got lost in this neighborhood that looked like the ghettos.The hotel we stayed at in Paris was built in the 1500s so the elevator was so small me and my mom had to go up first then my dad and the wheelchair. The hotel hall was in a U shape so by the time we got to 2nd corner I was crawling. My favorite part of was going to Versailles even though we could only see half cause to other half was not handicap accessible. We did go up to the Eiffel Tower the elevator couldn't go up to the very top so we went to the next level and the view was great.
When we were coming home from Paris the pilot said we have to make an emergency stop in Newfoundland, so everyone started calling their relatives and they said 2 planes crashed into the World Trade Towers. To make a long story short after the plane landed we sat on the plane for 12 hours then we stayed in a college in Newfoundland for 3 days. We were sleeping on old army cots and I was scared of falling off so I had to sleep between my mom and a wall. Since we couldn't take anything off the plane they gave me a wire wheelchair, so one day we were sitting in a little courtyard and there's a little slope down to leave and my mother dumps me out of the chair right in front of the disability coordinator we just walked away laughing.
For my 21st birthday my parents took me to Las Vegas. Colleen, my cousin Jessica, and I took a gondola ride, and the gondolier sang happy birthday to me in Italian. My mom, Jessica, Colleen and I stayedat the Venetain Hotel,while my dad,Uncle Richard, Aunt Sharon, Grandma and Uncle Jim stayed at the Paris hotel. One night we all went to the Bellagio and saw Cirque du Soleil. The last day we were there, Colleen and I walked down the strip and saw all the hotels, and at night us girls my parents and Grandma went to the Rio hotel and the Palms Hotel. `
After high school I went to this job training program for a few years but they said they couldnt find me a job.
Because of my obession with Italy my parents and I went to Venice and Florence in September of 2005. I loved Venice but it was kind of hard gettting around because of all the bridges and some of them had stairs. Florence was nice but there were no street signs and most of the roads were one way.
Now most of my friends are married and having kids or away at school. I'm thankful for the computer/internet it's the only way I can really have a life outside of my parents.

What alot of people don't see (when they look at me) is a girl with hopes and dreams like most girls my age (dreams like boyfriends, marriage and kids) they just see a girl in a wheelchair. And if you tell me I can't or I won't do something I'll try to prove you wrong.
If I could give advise to parents of kids with special needs make them feel smart, important, good about themself, and proud of themself whenever you can.
I think it was back in high school I started having thoughts of suicide. I still have them but not as often. Prozac helped alot with that. I have my good days and bad days.
After high school I had foot surgery to help me plant my foot on the floor, that worked for about a year. Now that I can't plant my foot at all anymore I need leg braces. Even though I hate them they do help.
These days for fun I like to go shopping, listen to music, go to the movies, play on the computer and travel. Sometimes I might be writing a song or two, writing lyrics in hopes one day they'll become songs. Im finding writting to help me with all feeling and frustrations.
This past October my parents & I invited Jen to Tennessee. We rented a cabin as usual Jen got a kick out of the electric fireplace. My favorite part was Flyaway (indoor skydiving). I told my parents they better watchout because I'll be here every weekend when we move there.

preschool-middle school

recital costume

my love for the smokies started early

Princess Wildflower

1st halloween in my wheelchair

cake fight birthday

Colorado

Colorado

My mom & dad knew something was wrong before I was 2, because I was so wobbly when I was sitting or standing. The doctor's told us that I had mild cerebral palsy, and it wouldn't get any worse.

I had a great time in gymnastics classes with my friends Lisa & Jen. I loved the running, tumbling and the trampoline, my instructor told my mom I had great muscles in my legs, the only thing I had trouble in was the balance beam. Then I took dance classes, and was in a recital up on stage singing "Hey Good Looking".

Things got a little harder as I got older. I got frustrated when everyone else in the neighborhood could ride a 2 wheeler bike, but no matter how hard I tried I couldn't do it. The neighborhood kids would try to help. Once I actually went around the whole block, but usually would end up hitting into fences or falling. Everyone else would go off riding their bikes ande I felt left out. As they got a little older they started riding their bikes to school, but my mom always would have to drive me there. I had a lot of fun Halloweens running around with my friends door to door going trick or treating. When I was 10 years old, I had to come up with a costume that would make sense of being in a wheelchair, by that time it was too hard to walk distances and I wasn't able to keep up with my friends running house to house.

When school started and we would have PE. I did great on the pulls ups. but I would fall a lot on the track, so I brought my own bandaids and neosporin to school for the scapes that I got. As I got older, around 7, I started loosing the pigment on my dark Florida tanned, Italian face and had large white spots popping up. Then I started drooling, something you don't see many 3rd graders doing, that year I had gotten braces, and maybe because of being more aware of my mouth, or maybe just trying to keep it closed more, the drooling eventually got better. The problems with balance were geting worse. When I started losing my pigment around my mouth and thats when the bullying started kids would call me milk mouth, stuck kick me signs on my back etc. I think it was also in 3rd grade I started loosing my balance so I couldn't stay in line so in school I would kind of weave or go side to side on the sidewalk.

The doctors finally realized I had something called Ataxia Telangiectasia, because I was walking into walls and falling down all the time.

When I was in 4th grade, it was too hard to walk to the cafeteria, library or anywhere outside the classsroom, so I got my 1st wheelchar and decorated it with Chicago Bulls and Cubs bumper sticker and gave the same support ot the Florida Marlins and the Heat. Its always taking me longer to write than the other kids in my classes, by the time I got in 4th and 5th it took so long I needed help. Then in middle school I got a permanent aide to read and write cause my tremors were starting worse. Now reading still manageable but writing barely manageable. One thing I cant do is read out loud.

When I was about 10 years old I took horseback riding lessons for awhile but I stopped because it got too hot in the summer in Florida, but I loved it. Then after high school I started riding again for a few years. It was starting to get pretty hard towards the end of the lesson because of my weakening muscles. Then after a few years I stopped because of money problems and I needed a break, now a days my back is getting worse but someday I'd like to try it again. For my 11th I had a big sleepover/pizza party. So when it came around time to have cake my parents decided to leave us alone, it was a big mistake. Because one girl decided to start a cake fight, so a few of us decided to tape underwear above the kitchen doorway we even put tennis balls in her bra, my mom even helped. For a couple years after we found cake and in the weirdest places, so to this day it is still know as the cake fight birthday.

For my 13th birthday we went to Colorado. The day we arrived my parents pushed me in a pile of snow and on the way to the room I kept saying my ankles are cold, my mom kept dismissing it so finally she felt them and they felt like icicles. Once we went to dinner and the waitress asked if I wanted ajus with my steak I looked at my parents weirdly because I thought the waitress said ah-choo, I thought she sneezed. There was this little town we ate breakfast at alot, so one morning we ate at this restaurant that had stories of ghosts sightings so that night I had nightmares.

In middle school I started loosing my hair, first it was the size of a dime, but it kept getting bigger and my mom would have to put a hairpeice over it to hide it, no one at school ever figured that out. When I started middle school, many of my grade school friends got sent to different schools, and being with new kids in most of my classes, most of them didn't know me. I have always been shy around new people, and feeling so different, I had fewer and fewer friends. I was now in a wheelchair all of the time. I had an aide that helped me get around the campus, and could help me write since that was getting much harder, and it took a lot of time, also in middle school I didn't have as many friends part because of my shyness and part because of my wheelchair, so I quickly learned who my true friends are, girls that I grew up with and knew them since I was about 2 years old, (Lisa, Jennifer, & Colleen). In my classes in middle school I had a few friends. In 7th grade I had a little microphone with a battery pack to use in all my classes. I thought it would be so cool, but I hated it, it was like carrying around a briefcase and it looked like something from the 80s. My teachers kept pushing me to use it eventhough I hated it, so we finally decided to get rid of it.