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.
Saturday, March 9, 2013
Friday, July 23, 2010
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.
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.
Saturday, June 5, 2010
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 =)
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 =)
Monday, May 17, 2010
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!!!!!!!
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!!!!!!!
Sunday, May 16, 2010
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 =)
Friday, May 14, 2010
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.
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.
Tuesday, May 11, 2010
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!!!
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!!!
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