Playlist

Mom just brought me a 6inch turkey sub from Subway. I wolfed it down. I Love Subway.

Btw... I just changed my playlist to songs that fit ataxia... falling, and being clumsy, rolling up (wheelchair), etc. How do u like it?

Food Baby

I look pregnant. I eat too much and drink too much pop. I don't walk a lot (it's hard) and I can't do a sit up to save my life.
Thus, I have decided to put myself on a diet. Starting on Monday, March 18, 2013, I stopped drinking pop and started eating smaller portions. I want to keep track of my progress here as well as my FA lifestyle. They kind of go hand in hand.
So, Monday I only had 1 pork chop at dinner, a small portion of corn, and a small amount of mashed potatoes, and a glass of milk with dinner, then water.
Tuesday I missed breakfast, but had water at lunch and dinner, and 6inches of a turkey and black forest sub with lettuce, tomato, and lite mayonnaise for lunch and the other 6 for dinner. Then I had half a bag of popcorn while iwatched Pretty Little Liars.
Wednesday I missed breakfast again (i've never been big on breakfast). I had 6innches of an oven grilled chicken sub from subway with lettuce, tomato, black olives, and lite mayonnaise for lunch. i had the other 6 for dinner.
Thursday was a busy day. I didn't eat until 3pm, I had a few granola bars and water. Then around 7 I had a cheese and broccoli baked potato.
Friday, yesterday, I  actually ate breakfast! I had 1 pack of instant oatmeal. For lunch I had 2 granola bars about an hour apart, and for dinner I had 2 small pieces of pizza. Water all day of course.
Today, I have been doing so good this week, i decided to reward myself with a 20oz bottle of Orange Sunkist for breakfast. :-)
Here's a before pic. This is why I am cutting pop and portions. Portion cutting has me hungry most of the time. It's hard.

I'm back!

I'm back!!
It's been a rough week for falling. I even put a scratch up my butt cuz i slipped on the floor getting into the shower.
Well this is a short post cuz I can't  think of anything to say!
More later!!

3 years?

Wow. It has been nearly 3 years since I last posted an entry. A lot has happened and changed... even in the blogger world. I need to spend time learning the new features.
Instead of trying to catch you all up on what has been happening, I am just going to start new.
Here's a random list of facts about me right now:
I turned 27 on February 5th
I LOVE to read
I am in the process of moving out of my ex bf's house.... a 16 month relationship. (Danny)
I have 4 cats

I was diagnosed in 2010 with Friedreich's Ataxia which has caused me symptoms such as:
heart problems (chest pains)
balance issues
lack of coordination
slight hearing difficulty
slurred speech
motor skill issues

I use a walker and I am in the process of finding a supplier to get me fitted for a wheelchair. I miss things such as the mall, amusement parks, anything with a lot of walking.
I am going to try to post as much as possible. Right now it might only be on Saturday's because I am nowhere with internet.
Well, I am going to go change up the look of my page, or try to anyway.
Take Care.

Reality Shows

Sorry it's been so long. I know some people, *cough*rhonda*cough*, read my posts all the time and miss it when I don't write. I really need to try to get better about keeping it up. I just don't have much to write everyday aside from "I fell again today" lol. I can write about my everyday life and stuff, like a diary, but this was meant for me to write about my ataxia.

So, I've been thinking over the last couple weeks. Almost everyone watches a reality TV show. Whether it is Bachelor or Bachelorette or like me who LOVES Big Brother.
WHY don't the creators of this show ever have a season with people in Wheelchairs or with other problems? I mean, I would so sign up to be on Big Brother if they did a wheelchair or a walker episode. I can't physically do their competitions without the good use of both of my legs.
Everyone in this world is not perfect like the people they put on these shows. I honestly do not think any1 in a wheelchair could ever do survivor. Well, maybe, I have never really watched the show. But if they could make the competitions in Big Brother wheelchair/walker friendly, such as thinking games and things not timed and stuff, then it'd be awesome. And Bachelor and Bachelorette? Why not make the girl/guy in a wheelchair? Why do we get left out and not involved because we are in wheelchairs? It isn't fair. I want a chance to meet people and win money on Big Brother, and I should be able to have a chance. Maybe on Big Brother, people in wheelchairs can go in the house with a walking friend to help them some. They could be voted out together and what not.

I like my idea.

Knock On Wood

Most of you who have been around me and do not know a whole lot about Freidreich’s ataxia probably think that it is something that only affects your walking. However, it affects all of your coordination (arms too).
I have heard stories of some people around my age that have a lot of trouble doing their eyeliner and some that have problems with things such as ketchup bottles.
(Knock on Wood) I do not have these problems to the same affect. My coordination in my arms is still pretty good. Maybe it is because I have always been a computer geek, I have always been an avid video game player, and I have always done tedious things with my hand such as cross-stitch and making jewelry.
If you know me, I am sure you have noticed my eyeliner. It is never perfect, never the same on both eyes, and my right eye is usually a wider width of black than my left, but I do it. Every day (almost).
I have trouble cutting meat… I feel like a little girl always asking for people to cut my steak or chicken or whatever. When I am in a restaurant, I try not to order things that need cutting, but when I do, I embarrass easily by having to ask my Dad, Mom, Boyfriend, or whoever to cut my food.
I have not yet had any trouble with condiments. I put my own mustard on my hotdogs and ketchup on my meatloaf, and I spoon my own sour cream on everything else (haha, I love my sour cream).
I type pretty fast, but not as fast as most computer people. I hit wrong keys lots, especially on laptops, and have to go back and fix it and I can’t type the way I was taught in high school and college… “home keys”
I count money slow, it’s the hand coordination. I could never work in a bank or running a register in a busy store. I feel bad now sometimes working in my mom’s store because sometimes people are in a hurry and I move slow.
I cannot do anything fast. I read slow, count money slow, write slow and sloppy, bag stuff slow, walk slow, snap my fingers slow, everything. Well, ok I lied. I drive kinda fast sometimes. LOL
I CAN still do my eyeliner, work ketchup bottles ;), put in my earrings, work jewelry clasps, play video games (wii, nintendo ds, play station, xbox360), drive, ride escalators, swim, etc. if I am sitting on my butt =)

Saturday, May 15 - Rhonda's wedding

Everything seemed to go wrong for me on Saturday.
First, Rhonda's wedding was at 4:30. Brandon shouldn't have gone, but he had an EMS call at about 2:30 and he went. Regardless of the fact that he should or shouldn't have gone, he tried to get back in time. He had the squad drop him off at home around 4, ran inside and got the quickest shower and shave known to man, lol, and we were out the door and at the church doors at 4:28. I was sooooo relieved. I couldn't imagine missing one of my best friend's wedding. Well, I didn't only have to imagine it, I have to live it because THE CHURCH DOORS WERE LOCKED! I cried and cried =(
Second, after we failed to get in the church, we walked back to my car, that my keys were locked in!!!
As we were waiting for Brandon's pap to bring my extra set of keys up, the church doors opened and the guests started coming out. His pap came to the rescue.... with the wrong set of keys!
We had to ride back to Brandon's with his pap, and as we were getting in the car, Rhonda and Brian came out of the church. When we got home, we had to take Brandon's grandparent's extra car (Brandon's truck was at the fire house), he dropped me off at my car, drove to his truck and parked his grandparent's car, we parked my car, and we hopped in his truck. All of this mess made us slightly late for the reception where we met up with newly engaged Amanda and Chad.
I took a pi of Amanda and she took one of me and of me and B and I got one of her and Chad and I got a few of Rhonda and Brian's first dance (in which he sang to her "You Had Me From Hello") and then my bateries died!!! In all the hustle and bustle, I had forgotten to take an extra pack of batteries!!
Did I mention that I also forgot their wedding card in my car so now I have to mail it, and I forgot a book I had taken for Amanda to borrow in my car too!
OMG - Saturday was a mess... but Rhonda looked absolutely beautiful!!!!!!!

Hair

Wednesday, Cassie came to Dad's and did my hair. I got the purple out and some red in. It is so bright right now that Dad says my hair is bleeding. LoL
Anyway, I had it done because my roots were so bad and I wanted my hair nice for Rhonda's wedding.
It was much easier to have her come to me instead of going to a salon... because I have to walk to the seat, then after sitting for a good hour I would have to walk stiffly over to wash my hair and back and out of the salon.... it's just a hassel (NOT that Miranda doesn't help me, it was just less embarrassing). Esoecially having been so dizzy, which btw I havent been lately =)

Repligen Files Investigational New Drug Application with FDA for First Drug Targeting the Core Genetic Defect of Friedreich's Ataxia

WALTHAM, Mass., May 13 /PRNewswire-FirstCall/ -- Repligen Corporation (Nasdaq: RGEN) announced today that it has filed an Investigational New Drug Application (IND) with the Food and Drug Administration (FDA) for a Phase 1 study of RG2833, a selective histone deacetylase 3 (HDAC-3) inhibitor. This is a double-blind, single ascending dose, Phase 1 study in healthy volunteers to evaluate the pharmacokinetic and safety profile of RG2833 in up to 40 subjects. This study will also evaluate the pharmacodynamic response of various biomarkers in peripheral blood to RG2833. Pending FDA approval, this study will be the first step in the clinical development of RG2833 as a potential treatment for Friedreich's ataxia.

"We are very pleased to file this IND with the FDA," stated Walter C. Herlihy, President and Chief Executive Officer of Repligen Corporation. "RG2833 is an orally bioavailable compound that targets activation of the defective gene responsible for Friedreich's ataxia. If this therapeutic approach is successful, it has the potential to change progression of the disease and significantly impact patients' lives."

Friedreich's ataxia is an inherited neurodegenerative disease caused by a defect in a single gene that results in inadequate production of the protein frataxin. Low levels of frataxin lead to degeneration of both the nerves controlling muscle movements in the arms and legs and the nerve tissue in the spinal cord. Preclinical studies in animal models and patients' cells have shown that RG2833 crosses the blood brain barrier, activates the defective frataxin gene and increases production of the protein frataxin. These results indicate that RG2833 may increase frataxin production and arrest disease progression in patients with Friedreich's ataxia.

RG2833 is a new chemical entity which is the subject of a composition of matter patent application which if allowed, will remain in force until 2029 prior to any patent term extensions. Repligen is also evaluating HDAC-3 inhibitors in animal models of Huntington's disease and cognition. RG2833 has been developed in collaboration with scientists from The Scripps Research Institute and a broad network of international scientific thought leaders. Repligen's research efforts have been partially funded with grants from the Muscular Dystrophy Association, the Friedreich's Ataxia Research Alliance, GoFAR and the National Ataxia Foundation.

About Friedreich's Ataxia

Friedreich's ataxia is characterized by limb ataxia, sensory polyneuropathy, hypertrophic cardiomyopathy and diabetes. At present, there are no effective treatments for Friedreich's ataxia and generally within 15 to 20 years after the first appearance of symptoms in adolescence, affected individuals are confined to a wheelchair. In later stages, patients become completely incapacitated and generally die in early adulthood from the associated heart disease, neuromuscular or diabetic complications. There are approximately 15,000 people worldwide with Friedreich's ataxia.

It's been a while!
So, after I found out that being without my Lexapro was the cause of my dizziness and stuff, I started on it again and was fine for a few days.
Then it started again and I have no clue why... I am going to my Doctor tomorrow, however I have been feeling a bit better... hence, why I am able to write. =)
My neurologist put me on this pill a few weeks ago for dizziness. She said it helps some people with FA. However, it made me soooooooo tired that when I was awake, my speech was more slurred and I was walking worse. (When I get tired everything is worse) I was also getting short of breath which was causing more chest pains (heart). Needless to say that I backed off it, and it helped some, so I fully quit taking it. Why take a pill that might work but is making me so tired that I am actually worse?
I went walking the other day at the cemetary. 3 laps around the pond is a mile and I only made it half way around before I got tired and started getting my daily dose of dizziness.
Rhonda's wedding is Saturday! I better not be dizzy and sick for it. Hopefully my doc can figure out what's wrong. I honestly think it is the weather.
I was supposed to be a bridesmaid, but I lost my job and couldnt pay for my dress or anything. I was also a bit nervous about walking down the aisle. At least she knows that I Love her very much!!!

Friedreich's ataxia is an inherited disease that damages your nervous system. The damage affects your spinal cord and the nerves that control muscle movement in your arms and legs. Symptoms usually begin between the ages of 5 and 15. The main symptom is ataxia, which means trouble coordinating movements. Specific symptoms include

Difficulty walking
Muscle weakness
Speech problems
Involuntary eye movements
Scoliosis
Heart palpitations

People with Friedreich's ataxia usually need a wheelchair 15 to 20 years after symptoms first appear. In severe cases, people become incapacitated. There is no cure.

Lottery

Well, I found out why I was so sick! While my allergies were bad, I had been off one of my pills for a few weeks and my body was so used to it that it was making me dizzy, nauseous, tired all the time, headches... Now I am back on it and feel sooooo much better. Which means, I feel good enough to start trying to get motivated to work my butt off. I'd like to lose maybe 10-15 lbs. and tone up my tummy and legs (While my arms are tiny, I look pregnant and my thighs have gotten real big). Plus, my diagnosis came back from Ohio State and I do have Friedreich's Ataxia (FA). My neurologist said that even though I cannot get back what I have lost, I can help slow down the process by staying active. As with everything else, it's hard to do without money. I would LOVE to join a gym.... prefferably one with a pool because I feel that my aquatic therapy has been the most beneficial for me.
I decided that since nothing much has been going on to write about, I can write about FA and what it causes and how I have noticed things with me.
Haha, I told Dad I should play the lottery. My neurologist said that I had a 1 in 40,000 chance of getting FA, and I did. Then she said I had a 25% chance of it being full blown and getting most of the symptoms, and I did. So, I guess I have a good chance of winning the lottery if I won the FA titles. lol
Speaking of lottery, did anyone see the guy who won the Powerball Lotto? He had $27 in his pocket. It's people like that who deserve to win, and I couldn't be happier for him!!

Sick

So... like 3 weeks ago today I started getting dizzy. It progressively got worse and it is to the point that I can't turn my head without getting nauseous or wanting to fall over. I thought it was a sinus infection, and my doctor perscribed me a Z-pack (antibiotic) to get rid of it, but it either didnt work or something else is wrong with me.
It makes me wonder: If I can stay up and not fall (well, sometimes...) when I feel like this, then why can't I walk normal when I feel good?
Anyway, today is pretty bad. I'm getting sick and a headache from typing. I'll write more soon.

LET ME DO IT!

Alright, I'm not in a good mood.... as you'll be able to tell from reading this.
The more people tell me that I can't do something, the more I'll believe it and won't be able to do it.
If I say I can do something, LET ME DO IT! Don't insist on helping me and then not listening to me when I say something.
I might have balance problems, but that doesn't mean I can't do anything on my own. I want to be able to do things by myself. Let me at least try, and if I need help, then I'll ask.
I'm just frusrated with the fact that there are some people out there who, no matter how much I offer to do something alone, insist on helping me or taking over and doing it themselves. Then they complain that since they are doing that, they don't have time to get other stuff done. I OFFERED TO DO IT BY MYSELF SO LET ME! I am able and I know how... my balance does not affect my intelligence!!! So, don't ask me a million times if I know how to do something as simple as putting a collar on a dog.
I'm not mindless, and I CAN DO THINGS!!!!!!!!!!
GRRRRR........

On a plus note, it's sunny and maybe I can get out to walk soon.

Laugh

I dont want anyone to think I was trying to put down Brandon. I was giving an example to show that not everyone knows how to act or what to do when something like that happens. Sometimes he handles things great, and others, well, he makes me feel worse. He's not the only one though. No matter how much my friends and family, and I have really great people in my life, no matter how much they think that they will always handle a situation well, there are going to be times, and have been times, when someone is going to make me feel worse.
I LOVE Brandon with all my heart, and I LOVE my family and friends so much it is unreal. It's amazing to me that one person can have such a huge support
system.
My point is, unless I fall and am crying because I am really hurt, I tend to laugh it off so I don't feel so dumb and embarrassed. Laugh WITH me. Not at me, and not if I am hurting, lol, but with me.

I haven't really had much on my ataxia to write about lately. I have no recent falls, nothing to say. Well, yesterday, Brandon and I went to books-a-million (the best store EVER) and then we went to target. I was looking at their swim suits when I rolled my ankle. I was pushing the buggy so I had something to hold onto, but my ankle didn't want to hold me up no matter how hard I gripped the buggy, and I more or less ended up sitting down. I think when things like this happen, and result in me sitting on the floor in a store, it embarrasses Brandon. His reaction is almost like "oh no, not again" and he hurriedly tries to get me off of the floor, all the while looking around to see if anyone is watching.
It's not like I intentionally fall in stores. You'd think he almost blames me when I draw attention. I sit there, on the floor, in pain, and he is rushing me to get up. All I am concerned about at the time is making sure my ankle stops so that I CAN get up. I don't need his attitude... I need him to laugh with me so that I don't feel so stupid.

I recently told you that I got a walker. As my Dad calls it, he bought me a new "sports car". It's a real pretty blue, on 4 wheels, with a bench, basket, and handbrakes! If it had pedals, I'd consider it looking like a bicycle, with the exception of it's length. I'll post pics of it soon =)

Saturday, I went to the Pittsburgh Penguin game with my Dad, Scott, and Janel. I had left my handicap parking thing in Brandon's truck, so we ended up having to park about a half mile away. It was an uphill walk - both ways!! No, just kidding, it only felt like it. It was up hill on the way to the arena and down on the way to the car. So, basically, I walked a mile to and from our seats. Well... I was drug a ways, lol. My legs got tired and my feet started dragging.

Sunday, Brandon picked me up and we went to Walmart (Wally World), and then dropped me back off at Dad's to pick up my car. Brandon and Dad put my walker together, and that night, Brandon and I went to the cemetary to walk. He told me that 3.5 laps around the pond was a mile, and, well, I made it 1 lap =) Hey, it's better than nothing. I got the pretty pictures that I posted on here too! When we were leasving, we chased a beaver but he was camera shy. I want a pic of one!

Monday, my legs hurt soooooooo bad!!!

We went to the cemetary again today and I did a lap. WooHoo! It feels good to be able to go walk, even if it is in a big circle =)

And I do get embarrassed there. At first, I was hesitant to walk because I was worried other people might show up, but I am starting to believe that I am embarrassed by looking so weak infront of Brandon.

When we got back tonight, he cooked me dinner while I played with Lulu and then gave her a bath.

Myself

I’m scared that by being me, by having ataxia and having a hard time finding a job, and by relying on other people, that I not only embarrass myself, but I am embarrassing to my friends and maybe my family. People not only look at me and wonder what I have been drinking, but they look at the people helping me. I’m sure they are just wondering why they are bothering with me.
See, no one thinks of this stuff. No one, not even the people closest to me understands what it is like. No one realizes how depressing it is to be me. I try to be positive. I have to. Without a positive outlook, what do I have? I have to know how to laugh at myself. My laughter hides my tears a lot of time.

Sorr y I haven't written lately. I have had a bad few days... personal problems. I'll write soon. I promise. I would now but I am doing a bit of Spring cleaning and I want to get done.

2001-2006 (in summary)

I was 15 in 2001. It was about a month before school started. I was going to be a sophomore. I mysteriously ended up with mono. (Yes it was mysterious, because even though they call mono the kissing disease, I had not kissed anyone, and I have no idea how I got it, but I had it bad). This might have been the cause of my ataxia. That’s what one of my past neurologists said anyway.
Haha. Funny story that doesn’t have a lot to do with anything, but I don’t want to bore you with my blabber all the time, so I’ll tell you. When I had mono, my Dad, Steve, and Step-Mom, Nancy, were re-doing the kitchen, so we had boxes of stuff, including the microwave, in the living room. I had woken up in the middle of the day hungry. Everyone was at work and I had a cheeseburger from Wendy’s in the fridge. They don’t do it anymore, but at the time Wendy’s wrapped their sandwiches in foil wrappers. See where this is going? I wasn’t thinking and put the cheeseburger in the microwave while it was still in the wrapper. Fire! Haha. It scared me to death! On the plus side, I realized what I had done before it was in there long and it only burnt a hole through the wrapper.
2001 was so fun for me, NOT! I don’t remember having mono anymore, but it was maybe a week before school started and I was at my Dad’s alone, and I had a new inhaler. You’ve probably seen the commercials for it. It’s a purple disk, Advair. Anyway, it’s full of steroids. Wondering why this matters? I used the inhaler and it put me on the floor in the living room, unable to move without my chest killing me with pain. My mom was the only one I could get a hold of, 20 minutes away, and she rushed there and found me in the same spot on the floor gasping for breath. Needless to say that I was taken to the ER where they found out I had a heart problem. Heart problems and steroids don’t mix.
They thought I had WPW, Wolf Parkinson White, which is an extra nerve or something in the heart and blah blah. They did a heart catheterization with the intentions of getting rid of the extra nerve and "fixing" me. In order to do this, I was of course out of it with anesthetic; they had to get my heart to race like it does when I have chest pains. Two or three times they had my heart racing to the point where they couldn’t get it to slow down and they had to use the paddles on me. And then, as if not fixing me wasn’t bad enough, I threw up all night and was in bed for a week because I had such a hard time coming out of the anesthesia. I couldn’t even open my eyes until the next day.
So they finally found out I have left ventricle hypertrophy and I went through all that crap for nothing. (I swear I was having anxiety attacks that caused this) I think they can fix this. I have heard something about alcohol burning the excess muscle or something.

Back to my ataxia. I don’t even remember when it started. I went to all of my high school homecomings and proms, in high heels I might add! I just thought I sucked at walking in heels. I think that was my problem my freshman, sophomore, and maybe my junior year. Senior year I knew something was wrong because I was scared of the steps and nervous about falling all the time, not just when I wore heels. I made it through graduation in heels without any incidents! I was so proud of myself! I graduated from high school in May 2004.
In September of 2004, I started at a technical college to obtain my degree in Business Management (even though writing and photography are my passions). This is where I met my best friend, Bill. I met a lot of great people.
I had to teach myself how to play euchre though because everyone played and no one would teach. I turned out to be a pretty great euchre player, if I do say so myself.
I graduated in 2006 with my associates in business management.
In 2005 I went to the beach with one of my best friends from high school and two new friends. This was the place of my first and last hangover, and the place where I realized that it’s easy to fall for a jerk if you are at the beach. Haha. I made new friends, and new memories, and I can tell you that I fell coming out of out hotel one night on our way to a club, and a ton of people saw my underwear (I was wearing a skirt). I learned that I can’t go into the ocean past my ankles or I’ll never get out. With my balance messed up, I went out to my waist and had the hardest time getting back in. We’ll just say that I drank a lot of water and spent the rest of my time in a chair at the waters edge.
Up until 2005 or 2006, everything was bearable. I got around pretty good and I was able to work at a retail store. I had a normal life. I went out with friends and even though I have only drank a few times; I am good at acting stupid, so I got along with drunks good. I just never expected to one day walk like I am drunk most of the time too.