Just to let anyone that is curious know how AT is affecting my daily living, I thought I'd write a little about it.
Already being quite thin at 5 feet and 87 pounds, my difficulty in getting food into my mouth is keeping me model runway thin. My decreasing muscle control makes it very hard to get food into my mouth, I have been known to stab myself more than a few times, even with a spoon somtimes the food can disappear from the time the food is on the plate and gets to my mouth, it usually ends up somewhere on the dining room table. On these day my mom needs to help. My dog, Vinnie appreciates it when it lands on the floor, and becomes HIS dinner.
Opening food wrappers and packaging is very hard, my lack of dexterity and my coordination makes it hard to pinch and grasp... no more picking up M&M's for me.
When I operate my wheelchair, I can no longer use my fingers. I move the joystick with the web area between my thumb and finger. I've put many holes in the walls and scratches on the kitchen appliances and furniture. It's a good thing my dad is handy with spackle.
My tremors are increasing, they are especially bad when I am sick or tired. No one can tell by just looking at me, that my muscles are constantly twitching. If some one sits next to me on the couch, they can feel the muscles constantly going into spasms and twitching. Valium can help a little, but it makes me tired and I fall asleep. I've noticed that I get more tired easier now, if I go out for an hour or two, I'm pretty beat, and headed for the couch for a nap. I know tremors use a lot of calories, and they eat up my energy.
Wednesday, December 19, 2012
Thursday, October 25, 2012
Reclast & AT advocator
Today I want to talk about acouple things. I finshed my 2 years of Forteo in Augest, I just had Reclast treatment (throuhg IV). The guy that gave me the injection said I might have a delaie reaction. About 12 hours later whille in bed I get the sweats and joint pain when I woke up I had very ba tremors.
Also I'd like tell you why I want to be an AT advocator. I would like to teach people espeially doctor about AT. When I (probably like most with AT do) go to a new doctor my mom and I have to tell them what AT is.
If you'd like help go to:n http://www.andersoncooper.com/be-on-the-show/798/
Also I'd like tell you why I want to be an AT advocator. I would like to teach people espeially doctor about AT. When I (probably like most with AT do) go to a new doctor my mom and I have to tell them what AT is.
If you'd like help go to:n http://www.andersoncooper.com/be-on-the-show/798/
Sunday, August 12, 2012
medical update
A new health problem started a couple months ago when I went to the ER after having a very bad cough and some bronchitis I was at home by myself and started to have severe tremors and muscle twitches. Also I couldn't keep my head still, my whole body was writhing,and my face was contorting. My mom came home and had to hold my head in her lap because my neck was so painful from the contortions .
At the ER they gave me morphine for the neck pain and put me on oxygen and IV fluids. Then they gave me ativan through the IV tube and within minutes the tremors stopped. They ran a urinalysis and found out that my tremors were so severe that my urine was dark which was caused by proteins from my muscles breaking down. They said it was the same thing that happens to marathon runners.
They released me from the ER and gave me a RX for valium, in case the tremors started again. The next afternoon I started up with some twitching and tremors, but nothing as bad as the day before, I took a valium, and they stopped about 20 minutes later.
I was just at the Neurologist because my tremors returned, but not as bad as the first time it happened. I had a yeast infection and used an over the counter medication, which I then had an allergic reaction to. A couple of days after the infection and reaction, the tremors started up. I went to the Neurologist he said some people that already have tremors can have them get worse from stress or physical illness. This is what seems to be happening to me. He gave me a RX for ativan since that helped me in the ER, I took one that afternoon and it did help.
Afew days ago my mom and I were in the car and I said I dont tell you half the stuff that Igo through. She said she appreiates it. She said she rather live in denial.
At the ER they gave me morphine for the neck pain and put me on oxygen and IV fluids. Then they gave me ativan through the IV tube and within minutes the tremors stopped. They ran a urinalysis and found out that my tremors were so severe that my urine was dark which was caused by proteins from my muscles breaking down. They said it was the same thing that happens to marathon runners.
They released me from the ER and gave me a RX for valium, in case the tremors started again. The next afternoon I started up with some twitching and tremors, but nothing as bad as the day before, I took a valium, and they stopped about 20 minutes later.
I was just at the Neurologist because my tremors returned, but not as bad as the first time it happened. I had a yeast infection and used an over the counter medication, which I then had an allergic reaction to. A couple of days after the infection and reaction, the tremors started up. I went to the Neurologist he said some people that already have tremors can have them get worse from stress or physical illness. This is what seems to be happening to me. He gave me a RX for ativan since that helped me in the ER, I took one that afternoon and it did help.
Afew days ago my mom and I were in the car and I said I dont tell you half the stuff that Igo through. She said she appreiates it. She said she rather live in denial.
Monday, March 26, 2012
coffee
For some reason when I drink coffee my tremors get worse. My dad thinks it's the caffeine and I dd too. But the more I thought about it my tremors don't get worse when I drink soda or anything else with caffeine. Most people would stop but I love my Starbucks Caramel Frappuccinos they are like my drug of choice. Usually a nap helps so I drink coffee about lunchtime or at night shortly before bed. Good thing caffeine doesn't keep me awake.
Sunday, March 18, 2012
memorable birthdays
3 of my most memorable birthdays were the ages of 10, 13 and 21.
My 10th birthday is known as the food fight birthday. It was a sleepover and we had pizza and cake for dinner. After we cut the cake it gets very quite so my parents decide to go in their room (BIG MISTAKE), then everyone starts screaming .My parents walk into the living room and the kitchen was covered with strawberry whipped cream cake. One of the girls took her piece of cake, and threw it across the room, everyone else started to do the same thing, and a food fight was on! Afterwards a girl takes the rest of the cake and throws it up to the fan. Eventually my parents get us in my room to take showers and change while they clean up, and there laughing but in front of us acting serious. After my parents went to bed we talked and played games. Guess who was the first to fall asleep yep the one that started the food fight. We deside to pull small prank on her at the same time my mom wakes up and actuallly helps plan the prank. We decide to tape her underwear over the doorway and we put the dog's tennis balls in her bra. (I guess a little pay back too.) For years after we (me and ,my parents) were finding cake in the oddest places like under tables, on phone cords, behind the frig the couch and the TV.
There was my 13th in Colorado I like to call this one the birthday I almost froze to death. I always said I wanted to see snow. We live in South Florida. First thing after we leave the airport my parents search for some snow, when we find a big pile my parents say get out of the car so I do then they push me in the snow. On the way to the hotel they talk about stopping for dinner first and I say but I'm freezing my mom's like your such a Florida kid until she felt my ankles, she told my dad they felt like ice cubes.
So after went to the hotel and I took a hot bath we went to dinner, I ordered prime rib when the lady gave me my dinner she asked if I wanted au jus. I thought she sneezed so I didn't say anything, my parents were like, juice do you want juice. (We have an on going joke about this)
For my birthday we went snowmobiling, the place that gave the snowmobile tours was on top of a hill so my parents pulled me in a little plastic sled since wheelchair don't work to well in snow.yThere's a little town we always ate breakfast in (called Georgetown), so the morning we leave my parents deside to eat at a new place in Georgetown, and there's a story that there is a ghost that haunts the restaurant. I have a big fear of dead people so I end up sleeping in my parents room for next night or 2.
My 21st was in Las Vegas with my parents, dad's brother and sister, her husband, grandma, cousin Jessica, and friend Colleen. It was so big because my the day after my 21st was my aunt's 50th.
Myself, mom, Colleen and Jessica stayed at the Venetian hotel, everybody else stayed at the Paris hotel. There was little shopping on the strip. On my birthday myself, mom, Colleen and Jessica ordered room service for breakfast. Then me, Colleen and Jessica got in line for a gondola ride, before the ride the guy sang happy birthday to me in Italian. Later, mom, Colleen and Jessica and I went to the spa for awhile. That evening we went to dinner at Lawry's, and to see Cirque du Soleil at the Bellaigo. The last day Colleen and I walked around the strip and we meet up with everyone at the Paris hotel, then we stopped at the Palms hotel where Colleen and I had a drink at the Ghost bar.
My 10th birthday is known as the food fight birthday. It was a sleepover and we had pizza and cake for dinner. After we cut the cake it gets very quite so my parents decide to go in their room (BIG MISTAKE), then everyone starts screaming .My parents walk into the living room and the kitchen was covered with strawberry whipped cream cake. One of the girls took her piece of cake, and threw it across the room, everyone else started to do the same thing, and a food fight was on! Afterwards a girl takes the rest of the cake and throws it up to the fan. Eventually my parents get us in my room to take showers and change while they clean up, and there laughing but in front of us acting serious. After my parents went to bed we talked and played games. Guess who was the first to fall asleep yep the one that started the food fight. We deside to pull small prank on her at the same time my mom wakes up and actuallly helps plan the prank. We decide to tape her underwear over the doorway and we put the dog's tennis balls in her bra. (I guess a little pay back too.) For years after we (me and ,my parents) were finding cake in the oddest places like under tables, on phone cords, behind the frig the couch and the TV.
There was my 13th in Colorado I like to call this one the birthday I almost froze to death. I always said I wanted to see snow. We live in South Florida. First thing after we leave the airport my parents search for some snow, when we find a big pile my parents say get out of the car so I do then they push me in the snow. On the way to the hotel they talk about stopping for dinner first and I say but I'm freezing my mom's like your such a Florida kid until she felt my ankles, she told my dad they felt like ice cubes.
So after went to the hotel and I took a hot bath we went to dinner, I ordered prime rib when the lady gave me my dinner she asked if I wanted au jus. I thought she sneezed so I didn't say anything, my parents were like, juice do you want juice. (We have an on going joke about this)
For my birthday we went snowmobiling, the place that gave the snowmobile tours was on top of a hill so my parents pulled me in a little plastic sled since wheelchair don't work to well in snow.yThere's a little town we always ate breakfast in (called Georgetown), so the morning we leave my parents deside to eat at a new place in Georgetown, and there's a story that there is a ghost that haunts the restaurant. I have a big fear of dead people so I end up sleeping in my parents room for next night or 2.
My 21st was in Las Vegas with my parents, dad's brother and sister, her husband, grandma, cousin Jessica, and friend Colleen. It was so big because my the day after my 21st was my aunt's 50th.
Myself, mom, Colleen and Jessica stayed at the Venetian hotel, everybody else stayed at the Paris hotel. There was little shopping on the strip. On my birthday myself, mom, Colleen and Jessica ordered room service for breakfast. Then me, Colleen and Jessica got in line for a gondola ride, before the ride the guy sang happy birthday to me in Italian. Later, mom, Colleen and Jessica and I went to the spa for awhile. That evening we went to dinner at Lawry's, and to see Cirque du Soleil at the Bellaigo. The last day Colleen and I walked around the strip and we meet up with everyone at the Paris hotel, then we stopped at the Palms hotel where Colleen and I had a drink at the Ghost bar.
Wednesday, January 25, 2012
help
It's frustrating when I have to let people help me, and I know I can do it sometimes. For example feeding myself, transfering from chair to chair, buckling your seat belt, picking up my pills in the morning or holding a cup. Sometimes I have to say ok I need help and I don't like it.
Im a stuborn Italian so, I don't like asking for help.
Im a stuborn Italian so, I don't like asking for help.
Tuesday, January 24, 2012
cell phones
Tring to find a phone is so frustrating. The buttons aren't big enough, and flip phones are to hard for me to open and usually the flip phones have bigger buttons. So I'm trhng to find a bar phone (that's not a touch screen). And buy a rubber cover (skin). Cause I drop em alot. Mission impossible?
Thursday, January 12, 2012
my dailly meds
Since it's getting harder for me to type and my tremors are getting worse my mom did most of the typing.
Daily Multiple Vitamin
ALPHA LIPOIC ACID 200mg is an antioxident
NEURONTIN 800 mg 4 x a day. This is for tremors. It becomes less effective once you're on it for a while, so it was increased to 600 3x a day, and now it up to 400mg 3 x a day
PROPRANOLOL ER 120MG, once a day, this is also for tremors, it is normally used as a blood pressure pill or for anxiety and panic. My tremors were getting very bad, it was geting difficult to feed myself, but once I started taking this, I saw a good improvement.
VITAMIN D2 1.25 MG once a week. This is for my bone health, I have very severe osteoporsis
My T score was -4, 2 years ago, which is about the worst it can get, my Rheumatologist said it was like having bones of an 85 year old, and I was only 26. My T-score improved to 3.1 over the last 2 years
LO LOESTRIN FE 1-10, this is a birth control pill which I use because on my hormone tests, it showed I was post menopausal, it help to regulate my hormones to help with my bone production
FORTEO 20 MG injection. This treats osteoporsis. You can only be on it 2 years, I have about 8 months to go. My mom gives me an injection in my thigh every night. It hurts a little from the pressure of the fluid.ffe
PREVACID 30 mg. I have gastritis, so this helps prevent heartburn and nausea
PROZAC 40 MG wouldn't you be depressed?
AMBIEN 10 MG I was having trouble going to sleep, sometimes it would take an hour or two, so this helps me fall asleep fast and stay asleep.
PS- I've gotten a few emails telling me how I helped younger families w/ AT childern. Even my cousin said "I never knew how hard Court's life is." I'm tring to get on the Anderson show so I can help other families or help people undetand what AT is, so if you could help me I'd appreciate it.
Daily Multiple Vitamin
ALPHA LIPOIC ACID 200mg is an antioxident
NEURONTIN 800 mg 4 x a day. This is for tremors. It becomes less effective once you're on it for a while, so it was increased to 600 3x a day, and now it up to 400mg 3 x a day
PROPRANOLOL ER 120MG, once a day, this is also for tremors, it is normally used as a blood pressure pill or for anxiety and panic. My tremors were getting very bad, it was geting difficult to feed myself, but once I started taking this, I saw a good improvement.
VITAMIN D2 1.25 MG once a week. This is for my bone health, I have very severe osteoporsis
My T score was -4, 2 years ago, which is about the worst it can get, my Rheumatologist said it was like having bones of an 85 year old, and I was only 26. My T-score improved to 3.1 over the last 2 years
LO LOESTRIN FE 1-10, this is a birth control pill which I use because on my hormone tests, it showed I was post menopausal, it help to regulate my hormones to help with my bone production
FORTEO 20 MG injection. This treats osteoporsis. You can only be on it 2 years, I have about 8 months to go. My mom gives me an injection in my thigh every night. It hurts a little from the pressure of the fluid.ffe
PREVACID 30 mg. I have gastritis, so this helps prevent heartburn and nausea
PROZAC 40 MG wouldn't you be depressed?
AMBIEN 10 MG I was having trouble going to sleep, sometimes it would take an hour or two, so this helps me fall asleep fast and stay asleep.
PS- I've gotten a few emails telling me how I helped younger families w/ AT childern. Even my cousin said "I never knew how hard Court's life is." I'm tring to get on the Anderson show so I can help other families or help people undetand what AT is, so if you could help me I'd appreciate it.
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