Recently http://www.theadventuresofsupermom.com/ had a contest throughhttp://www.uprinting.com/ . Where you enter for business cards and reason for using them.
I am always out needing to tell someone about Pepper Knows Best. Michelle and Uprinting hope to help me and my hydro peeps spread the word about hydro even if we do it one card at a time. Thank you for your Helpful Gift.
Thursday, January 28, 2010
Is it going to Snow?
Local weather has been telling that we could see 6 to 12 inches of snow in the northern areas of Western North Carolina. I love the snow but I really did not enjoy being without power for 8 days. I love my parents but it was hard on me and hard for them to live with me and my animals.
I know something is going to happen I have the famous "Weather Doppler Headache" If it could only give predictions. I just know the pressure system is changing.
I am adjusting to this dose of the Topamax. I am starting to get my appetite back. Sugar still tastes like dirt but I am feeling hungry every so often.
I know something is going to happen I have the famous "Weather Doppler Headache" If it could only give predictions. I just know the pressure system is changing.
I am adjusting to this dose of the Topamax. I am starting to get my appetite back. Sugar still tastes like dirt but I am feeling hungry every so often.
Tuesday, January 26, 2010
First day of class
I have issues getting up of the mornings anymore. So I woke up several hours before my class to have tome to get some caffeine in my system. I was hoping the class would be all newbies like me , but no... Sixteen women one one that was like me and I wanted as far from her as possible. That is all I need is the blind leading the blinder.
I have got to sit down and play with my Mamaw's sewing machine the ones in the sewing class were really trying my patients. But I did not feel too bad a lady sitting with me was also having issues and she is a quilter.
My fatigue is really showing it's self today. It was a 3 hour class which I was watching the clock but I made it. As soon as I got home I got Pepper and layed down and fell asleep. He woke me sometime up in the evening to feed him and get him up and down out of the bed. But I was mostly doing all this in my sleep. Pepper still can't get up on the bed by-himself since he got hurt at Christmas. So I am still playing poodle mobile. He whines until I help him with what he needs.
I have got to sit down and play with my Mamaw's sewing machine the ones in the sewing class were really trying my patients. But I did not feel too bad a lady sitting with me was also having issues and she is a quilter.
My fatigue is really showing it's self today. It was a 3 hour class which I was watching the clock but I made it. As soon as I got home I got Pepper and layed down and fell asleep. He woke me sometime up in the evening to feed him and get him up and down out of the bed. But I was mostly doing all this in my sleep. Pepper still can't get up on the bed by-himself since he got hurt at Christmas. So I am still playing poodle mobile. He whines until I help him with what he needs.
Should have posted this Sunday
It started Saturday with a bruised kinda headache like when I would have a shunt adjustment. Then Sunday it was worse. I was dizzy and my head was splitting. Every time I would move my ears would stop up, I would get dizzy, about to pass out, then the rush of pain to my head.
Sitting at dinner with Momma and Daddy I started wondering if it could be a reaction to Topamax then we remembered. Friday we went swimming. So as soon as I came in the door I put some swimmers ear in and it went away. I can't believe how terrible I felt for it to just go away in a matter of minutes. I had water in my ears.
Sitting at dinner with Momma and Daddy I started wondering if it could be a reaction to Topamax then we remembered. Friday we went swimming. So as soon as I came in the door I put some swimmers ear in and it went away. I can't believe how terrible I felt for it to just go away in a matter of minutes. I had water in my ears.
Sunday, January 24, 2010
It was all a LIE!!!
It started yesterday with a slight headache while I was cleaning. So I took a break and layed down (flat) and this made it worse. It was crazy I felt like I had the programmable shunt once again. I had that stupid bruised headache I always got right after they did an adjustment.
The crazy bruised headache does not seem to be around too much this morning but I have my Weather Doppler headache back. I was seeing the sings of the Topamax working really fast in the instructions it says it takes at least 2 weeks to get in your system.
Maybe it was all just a teaser of what the meds can do or will do.
The crazy bruised headache does not seem to be around too much this morning but I have my Weather Doppler headache back. I was seeing the sings of the Topamax working really fast in the instructions it says it takes at least 2 weeks to get in your system.
Maybe it was all just a teaser of what the meds can do or will do.
Friday, January 22, 2010
I'm feeling so selfish
The Topamax is helping this time. Really fast too. Four days and I can tell I am not reacting as much to weather. My tremors are not near as bad. The hurt is gone. Well not gone. But, nearly. I have a bit of energy.
I feel terrible that so many of my friends are not having good results though.
But I also worry this will only last a short while.
I feel terrible that so many of my friends are not having good results though.
But I also worry this will only last a short while.
Continued from yesterday
I post a surgery of a programmable shunt yesterday. Which I have had several. And my body did not like and I had constant issues with.
I have a non-programmable VA shunt. Below is the difference in the 2. There are several other places the distal can drain it just is not as common.
ventriculo-atrial (VA) shunts: a shunt that is placed into a brain ventricle to drain cerebrospinal fluid (CSF) from the ventricular system into the heart.
ventriculo-peritoneal (VP) shunts: a shunt that is placed into a brain ventricle to drain cerebrospinal fluid (CSF) from the ventricular system into the abdomen.
I have a non-programmable VA shunt. Below is the difference in the 2. There are several other places the distal can drain it just is not as common.
ventriculo-atrial (VA) shunts: a shunt that is placed into a brain ventricle to drain cerebrospinal fluid (CSF) from the ventricular system into the heart.
ventriculo-peritoneal (VP) shunts: a shunt that is placed into a brain ventricle to drain cerebrospinal fluid (CSF) from the ventricular system into the abdomen.
Thursday, January 21, 2010
Just About Me?
When I first started my blog it was just about me. I had plans to journal my medical issues online. Mostly for myself to keep track of my own issues. Then something happened someone could understand. Then I got someone without hydro to listen.
I have found a group of friends that share my condition and can relate to everything I do. So It is no longer "just about me".
I have found a group of friends that share my condition and can relate to everything I do. So It is no longer "just about me".
Tuesday, January 19, 2010
Day 3 of Topamax
I have always known this is a drug that takes some time to get into my system and to be able to see the effects. I know for sure I am seeing some side effects. On dopamax 3 days lost 3 pounds ~ not complaining~ I still get hungry I just get repulsed by whatever I am trying to eat.
My headache does not seem to be as bad. At least I am not taking as much medication. I still feel the tremors but not as bad. A really big thing I had been aching and that is getting a lot better.
I had a visit from Loopy Lucy yesterday while talking to Michelle. I'm not totally sure it I gave up some really good black mail material or not. I remember thinking I should try to fly off the back 3 steps of my deck ~maybe not real exciting~
My headache does not seem to be as bad. At least I am not taking as much medication. I still feel the tremors but not as bad. A really big thing I had been aching and that is getting a lot better.
I had a visit from Loopy Lucy yesterday while talking to Michelle. I'm not totally sure it I gave up some really good black mail material or not. I remember thinking I should try to fly off the back 3 steps of my deck ~maybe not real exciting~
Saved from Senility (repost)
Saved from Senility
(CBS) ..For many people, it's the worst possible news. They're diagnosed with Alzheimer's or Parkinson's, and they're told to put their affairs in order and prepare for years of suffering, and eventually, death.
Millions of Americans have to live with that diagnosis -- and all the heartache that goes with it. But what if the diagnosis is wrong? What if they're suffering from something that's treatable? Correspondent Vicki Mabrey reports.
"I was totally convinced I was dying. I was totally convinced I'd be gone in a month or a so," says Bob Fowler, who wrote his own obituary five years ago, at the age of 69.
"It was hard to write it. I was totally convinced because I'd been to doctor after doctor after doctor with absolutely no positive results. No diagnosis of what was wrong with me at all. It was a very traumatic time for us."
For nearly a decade, Fowler had struggled with debilitating symptoms – trouble with balance, memory, and incontinence. Doctors suspected Parkinson's or Alzheimer's, but weren't sure. His condition worsened so terribly that he ended up in a wheelchair and had to stop working. Eventually, his wife Bonita began making plans to put him in a nursing home.
Fowler says he also developed a severe case of dementia: "One morning, I wandered out to the sidewalk to get our morning paper. And Bonita was at the door and she yelled at me. She said, 'Why don't you have anything on?' I said, 'Well, I've got a towel.' I had a towel around my neck and nothing else on. Now, I've always been a shy, kind of private person. And yet, it just didn't seem to matter."
He says he's probably been to 15 doctors over the past nine years. And in all of those years, none of his doctors suggested he have an MRI or CT scan, and he never got a definitive diagnosis of what was wrong with him.
In Phoenix, retired dentist Milt Newman suffered for 15 years from the same symptoms as Fowler. In Newman's case, a CT scan was performed, yet none of his doctors could pinpoint what was causing his decline.
"My concentration was nil. There wasn't any. Reading a book was difficult because I couldn't remember what happened 10 pages back," says Newman. "And later on, conversation was difficult because I'd forget what people would say."
He says it started when he was 55. His wife, Phyllis, says she remembers watching her once vibrant husband simply slip away: "It was like his brain was sinking into his body. That's the only way I could say."
Eventually, he was diagnosed with Alzheimer's. "I was floored by that because to me that was a death sentence," says Newman. "I said to myself,'Well, let me get prepared.'"
What Newman wasn't prepared for, however, was the news that it was all a mistake – and that there was hope.
Last year, after 15 years of suffering, Newman met Dr. Harold Rekate, a neurosurgeon at the Barrow Neurological Institute in Phoenix. He realized that what Newman had wasn't Alzheimer's but a condition called normal pressure hydrocephalus or NPH. NPH is caused by excess fluid putting pressure on the brain.
"There's 10 times too much fluid in here than there is in a normal person," says Rekate. "It's pushing the brain outward and stretching the nerve fibers so they can't function properly."
The result can be the very symptoms that plagued both Newman and Fowler – problems with gait, or walking, with thinking and bladder control.
To Dr. Rekate, those symptoms – especially a shuffling walk – are a giveaway. But doctors rarely realize that the cause might be NPH and a surprising number of cases go undiagnosed, and untreated.
Alzheimer's and other forms of dementia afflict more than 7 million people in the United States, but medical professionals estimate that between 5 and 10 percent of them -- at least 375,000 people -- might actually have NPH. And most physicians are missing it. Why?
"It's hard to make the diagnosis. You have to sit down and you have to listen and you have to examine the patient. And you have to do it in a thorough way. And then you have to order an expensive test," says Rekate. "An MRI scan will cost somewhere around $2,000-3,000. It's not that the insurance carriers want you to do that."
So what do those who are misdiagnosed need to do? "You don't have to go gently into that good night," says Rekate. "You need to fight. And we need to give you the tools to fight."
The first tool is knowledge, because once the condition is discovered, the treatment is a 45-minute procedure in which neurosurgeons surgically insert a tube called a shunt into the brain. That tube drains the excess fluid from the brain and moves it to the belly where it can be absorbed.
The shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now it is done painlessly with a magnet in the doctor's office.
After the surgery, Newman said he "felt like the old Milton."
Fowler said he had a similar transformation in 1999, when he was finally told that he had NPH: "I never anticipated feeling that good again in my life. And all of a sudden I felt fantastic. I'm 74 years old now and I'm doing things that I would have dreamed of doing any time during my 60s."
Today, five years after his surgery, Fowler is back at work and back at play. But he's also a man with a mission to spread the word about NPH.
He's starred in a public-service announcement, re-enacting what his symptoms were like then, and showing how he is now. The ad was produced by one of the shunt manufacturers.
"We've had hundreds of calls from patients who saw those commercials and said, 'That sounds like me. It sounds like my mother, my father, someone that I know,'" says Dr. Gail Rosseau, a neurosurgeon at the Chicago Institute Of Neurosurgery and Neuroresearch.
Rosseau is working to raise awareness in both doctors and patients about the three classic signs of the condition.
"Patients and their families should know that if someone is aging and their gait is worsening, their mental thought processes are becoming less clear, and they have urinary incontinence, they need a scan," says Rosseau. "They need to insist on a scan and they need to see a specialist who knows about normal-pressure hydrocephalus."
But even that, she says, might not lead to a dramatic recovery.
"We can improve the symptoms of normal-pressure hydrocephalus, but we can't make you look younger," says Rosseau. "We can't slow down the other things that make you feel old that have happened during that same period: arthritis, perhaps heart disease, the other medical problems that we all seem to accumulate as we get older. This only helps one of them, but when we're right about it, it can help a lot."
No one understands that more than Fowler, who says he feels like he's been given a second chance, and he wants to share it with others.
"I can spot 'em quickly. I've even walked up to people and had the audacity to walk up to a person and say, 'Have you had an MRI or a CT scan in the last few years?' And they say, 'No why, what business is it of yours,'" says Fowler.
"And I say, 'Because I know your gait and I know your walk. I want you to go from here and have a CT scan or an MRI. Do yourself a favor.'"
(CBS) ..For many people, it's the worst possible news. They're diagnosed with Alzheimer's or Parkinson's, and they're told to put their affairs in order and prepare for years of suffering, and eventually, death.
Millions of Americans have to live with that diagnosis -- and all the heartache that goes with it. But what if the diagnosis is wrong? What if they're suffering from something that's treatable? Correspondent Vicki Mabrey reports.
"I was totally convinced I was dying. I was totally convinced I'd be gone in a month or a so," says Bob Fowler, who wrote his own obituary five years ago, at the age of 69.
"It was hard to write it. I was totally convinced because I'd been to doctor after doctor after doctor with absolutely no positive results. No diagnosis of what was wrong with me at all. It was a very traumatic time for us."
For nearly a decade, Fowler had struggled with debilitating symptoms – trouble with balance, memory, and incontinence. Doctors suspected Parkinson's or Alzheimer's, but weren't sure. His condition worsened so terribly that he ended up in a wheelchair and had to stop working. Eventually, his wife Bonita began making plans to put him in a nursing home.
Fowler says he also developed a severe case of dementia: "One morning, I wandered out to the sidewalk to get our morning paper. And Bonita was at the door and she yelled at me. She said, 'Why don't you have anything on?' I said, 'Well, I've got a towel.' I had a towel around my neck and nothing else on. Now, I've always been a shy, kind of private person. And yet, it just didn't seem to matter."
He says he's probably been to 15 doctors over the past nine years. And in all of those years, none of his doctors suggested he have an MRI or CT scan, and he never got a definitive diagnosis of what was wrong with him.
In Phoenix, retired dentist Milt Newman suffered for 15 years from the same symptoms as Fowler. In Newman's case, a CT scan was performed, yet none of his doctors could pinpoint what was causing his decline.
"My concentration was nil. There wasn't any. Reading a book was difficult because I couldn't remember what happened 10 pages back," says Newman. "And later on, conversation was difficult because I'd forget what people would say."
He says it started when he was 55. His wife, Phyllis, says she remembers watching her once vibrant husband simply slip away: "It was like his brain was sinking into his body. That's the only way I could say."
Eventually, he was diagnosed with Alzheimer's. "I was floored by that because to me that was a death sentence," says Newman. "I said to myself,'Well, let me get prepared.'"
What Newman wasn't prepared for, however, was the news that it was all a mistake – and that there was hope.
Last year, after 15 years of suffering, Newman met Dr. Harold Rekate, a neurosurgeon at the Barrow Neurological Institute in Phoenix. He realized that what Newman had wasn't Alzheimer's but a condition called normal pressure hydrocephalus or NPH. NPH is caused by excess fluid putting pressure on the brain.
"There's 10 times too much fluid in here than there is in a normal person," says Rekate. "It's pushing the brain outward and stretching the nerve fibers so they can't function properly."
The result can be the very symptoms that plagued both Newman and Fowler – problems with gait, or walking, with thinking and bladder control.
To Dr. Rekate, those symptoms – especially a shuffling walk – are a giveaway. But doctors rarely realize that the cause might be NPH and a surprising number of cases go undiagnosed, and untreated.
Alzheimer's and other forms of dementia afflict more than 7 million people in the United States, but medical professionals estimate that between 5 and 10 percent of them -- at least 375,000 people -- might actually have NPH. And most physicians are missing it. Why?
"It's hard to make the diagnosis. You have to sit down and you have to listen and you have to examine the patient. And you have to do it in a thorough way. And then you have to order an expensive test," says Rekate. "An MRI scan will cost somewhere around $2,000-3,000. It's not that the insurance carriers want you to do that."
So what do those who are misdiagnosed need to do? "You don't have to go gently into that good night," says Rekate. "You need to fight. And we need to give you the tools to fight."
The first tool is knowledge, because once the condition is discovered, the treatment is a 45-minute procedure in which neurosurgeons surgically insert a tube called a shunt into the brain. That tube drains the excess fluid from the brain and moves it to the belly where it can be absorbed.
The shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now it is done painlessly with a magnet in the doctor's office.
After the surgery, Newman said he "felt like the old Milton."
Fowler said he had a similar transformation in 1999, when he was finally told that he had NPH: "I never anticipated feeling that good again in my life. And all of a sudden I felt fantastic. I'm 74 years old now and I'm doing things that I would have dreamed of doing any time during my 60s."
Today, five years after his surgery, Fowler is back at work and back at play. But he's also a man with a mission to spread the word about NPH.
He's starred in a public-service announcement, re-enacting what his symptoms were like then, and showing how he is now. The ad was produced by one of the shunt manufacturers.
"We've had hundreds of calls from patients who saw those commercials and said, 'That sounds like me. It sounds like my mother, my father, someone that I know,'" says Dr. Gail Rosseau, a neurosurgeon at the Chicago Institute Of Neurosurgery and Neuroresearch.
Rosseau is working to raise awareness in both doctors and patients about the three classic signs of the condition.
"Patients and their families should know that if someone is aging and their gait is worsening, their mental thought processes are becoming less clear, and they have urinary incontinence, they need a scan," says Rosseau. "They need to insist on a scan and they need to see a specialist who knows about normal-pressure hydrocephalus."
But even that, she says, might not lead to a dramatic recovery.
"We can improve the symptoms of normal-pressure hydrocephalus, but we can't make you look younger," says Rosseau. "We can't slow down the other things that make you feel old that have happened during that same period: arthritis, perhaps heart disease, the other medical problems that we all seem to accumulate as we get older. This only helps one of them, but when we're right about it, it can help a lot."
No one understands that more than Fowler, who says he feels like he's been given a second chance, and he wants to share it with others.
"I can spot 'em quickly. I've even walked up to people and had the audacity to walk up to a person and say, 'Have you had an MRI or a CT scan in the last few years?' And they say, 'No why, what business is it of yours,'" says Fowler.
"And I say, 'Because I know your gait and I know your walk. I want you to go from here and have a CT scan or an MRI. Do yourself a favor.'"
Monday, January 18, 2010
My letter to Hydrocephalus (repost)
Ok, roomie , you evidently have me confused with some one else! I am never up for just a resonable fight. I love a good fight- so pack a lunch you son of a bitch; you have met your match with me. And I am not ashamed to admit that I fight dirty.
Did you ever think that maybe I chose you? Or that maybe it wasn't just coincidental that we ran into each other? Did you really think that I just let you walk in? You need your ass kicked and I'm gonna be the one to do it. I'm your worst nightmare.
Friends? We'll never be friends you piece of shit. The needles are just a start as to what I'm going to do to you. It's like Chinese torture-- I'm just starting out with the little things. Needles and steroids are minor compared to the horrifying things I have up my sleeve for you. Sure, I like to avoid pain and suffering BUT I'll also be the first to dish it out. I can be just as vengeful as you. Don't you worry, I'll serve your ass with an eviction notice soon enough!
Keep thinking that I'm calm..that's exactly what I want. Go ahead and keep trying to mess with me. When you least expect it- I'm gonna Muhammad Ali your ass. Sure you may get some blows in but, do you really think that messing with my vision or mobility is really gonna take me down? I'm bigger than that. I love life and I'm not going to let anyone or anything get in my way of being happy. It's going to take a lot more than something as sorry as you to hold me back. Oh, and by the way, you think that you're hurting me if I wet myself?? I'm pissing on your face ass hole! Screw with my bowels next and see what happens!
It's you who has to learn to respect me. I DEMAND respect and eventually you'll give it to me. I don't mind long fights. What's the fun in a three round match? I'll take greater pleasure in TKO'ing your ass in the 12th. Before long you'll be begging for mercy. You'll hate surprises when I'm through with you. I have something that you don't-- HEART AND DETERMINATION. That's why I'm gonna win this fight!
You got the short end of the stick when you showed up here! Are you wondering now if you had the wrong address? Nope, I've been waiting for you. I was born with a mission-- it just took me awhile to find out what it was. So, be prepared, I've been in training for over 30 years!
And for the record- screw your perspective and screw you too.
Very truly yours!
THE LAST ONE STANDING"
Did you ever think that maybe I chose you? Or that maybe it wasn't just coincidental that we ran into each other? Did you really think that I just let you walk in? You need your ass kicked and I'm gonna be the one to do it. I'm your worst nightmare.
Friends? We'll never be friends you piece of shit. The needles are just a start as to what I'm going to do to you. It's like Chinese torture-- I'm just starting out with the little things. Needles and steroids are minor compared to the horrifying things I have up my sleeve for you. Sure, I like to avoid pain and suffering BUT I'll also be the first to dish it out. I can be just as vengeful as you. Don't you worry, I'll serve your ass with an eviction notice soon enough!
Keep thinking that I'm calm..that's exactly what I want. Go ahead and keep trying to mess with me. When you least expect it- I'm gonna Muhammad Ali your ass. Sure you may get some blows in but, do you really think that messing with my vision or mobility is really gonna take me down? I'm bigger than that. I love life and I'm not going to let anyone or anything get in my way of being happy. It's going to take a lot more than something as sorry as you to hold me back. Oh, and by the way, you think that you're hurting me if I wet myself?? I'm pissing on your face ass hole! Screw with my bowels next and see what happens!
It's you who has to learn to respect me. I DEMAND respect and eventually you'll give it to me. I don't mind long fights. What's the fun in a three round match? I'll take greater pleasure in TKO'ing your ass in the 12th. Before long you'll be begging for mercy. You'll hate surprises when I'm through with you. I have something that you don't-- HEART AND DETERMINATION. That's why I'm gonna win this fight!
You got the short end of the stick when you showed up here! Are you wondering now if you had the wrong address? Nope, I've been waiting for you. I was born with a mission-- it just took me awhile to find out what it was. So, be prepared, I've been in training for over 30 years!
And for the record- screw your perspective and screw you too.
Very truly yours!
THE LAST ONE STANDING"
Sunday, January 17, 2010
Drive By was a success
Went out to breakfast and did an early morning drive by the local drug store. I demanded Topamax. Seeing that my demand was through the drive through it did not get the desired effect.
Oh wait... Dopamax on board. The doctor called it in so I could put the water gun and pop rocks away.
I'm being a real hugh chicken this time and only starting out with 25 mg. I had to stop taking it before because I totally turned into "Loopy Lucy" But I also kept going up on the dose as directed thinking the side effect of not knowing my name or how to call 911 would go away.
PS. Just thought this was funny...My spell check wants to change Topamax to tampax...lol
Oh wait... Dopamax on board. The doctor called it in so I could put the water gun and pop rocks away.
I'm being a real hugh chicken this time and only starting out with 25 mg. I had to stop taking it before because I totally turned into "Loopy Lucy" But I also kept going up on the dose as directed thinking the side effect of not knowing my name or how to call 911 would go away.
PS. Just thought this was funny...My spell check wants to change Topamax to tampax...lol
Saturday, January 16, 2010
Topamax is back
I finally gave in and decided the tremors are not going away. I had to cancel and reschedule my appointment with my neurologist Tuesday to sometime in April. ~Loud sigh~ So I talked to his PA since he was not in the office. She talked with the other neurologist Dr. P is in with and he decided to put me back on Topamax.
This time I have done my research. The PA wanted me to start out at a higher dose but I knew that it comes in 25 mg. I ask if I could start there. She agreed but really suggested the higher dose.
So give me a couple of weeks if anyone has any really important legal papers you need me to sign get them ready because "dopamax" is back on the job...
This time I have done my research. The PA wanted me to start out at a higher dose but I knew that it comes in 25 mg. I ask if I could start there. She agreed but really suggested the higher dose.
So give me a couple of weeks if anyone has any really important legal papers you need me to sign get them ready because "dopamax" is back on the job...
Friday, January 15, 2010
Blog came in real handy...
Wednesday I had to go see my doctor in South Carolina. The trip really did a number on me. Ever since taking the Christmas tree down I have had my tremors back. Not extremely bad but they are back. But when I took the ride to Dr. S I was miserable. The shaking was so bad I could not even hold a fork to eat. The more fatigued I get the more I shake and it hurts. I feel like my muscles are in constant contractions all over my body.
I have tried a medicine once before to help with the tremors but I could not remember why I could not take it. This is where my blog came in real handy. I looked through old post which I could not even remember why I quit taking it or the name of it.
I have a call into my neurologist now to see if there is something else I can try. Really glad I could take a look and see why I quit the Zonegran because I am sure he would try me on it again. It is suppose to have less side effects than other medicine but it caused me kidney problems and more fatigue issues plus I could not sleep.
I had forgot these things. Thank goodness for the blog. Waiting for Doc to call back. I had to cancel my appointment with him Tuesday because of ice on the roads.
This twitching and aching and hurting is wearing me down. The more I try to control the tremors the more tense I get. When I get tense I have the muscle contraction. You would not think a little thing like shaking would hurt so. And to answer your question no pain medicine helps at all.
I have tried a medicine once before to help with the tremors but I could not remember why I could not take it. This is where my blog came in real handy. I looked through old post which I could not even remember why I quit taking it or the name of it.
I have a call into my neurologist now to see if there is something else I can try. Really glad I could take a look and see why I quit the Zonegran because I am sure he would try me on it again. It is suppose to have less side effects than other medicine but it caused me kidney problems and more fatigue issues plus I could not sleep.
I had forgot these things. Thank goodness for the blog. Waiting for Doc to call back. I had to cancel my appointment with him Tuesday because of ice on the roads.
This twitching and aching and hurting is wearing me down. The more I try to control the tremors the more tense I get. When I get tense I have the muscle contraction. You would not think a little thing like shaking would hurt so. And to answer your question no pain medicine helps at all.
Thursday, January 14, 2010
Tuesday, January 12, 2010
Back to the grind
For me this use to mean back to work. Back to going in at 5:30 to open the store to lip through the windowed door to contractors "We are not open yet" The stress of stressed out customers that were sure there problem was mine and was going to be mine until they either made me cry of got half the store for free... I don't really miss this.
But do you know what I traded. I don't work. But I am now busier than ever with doctors appointments. You think that is not so bad. But I also have to attend water exercise ( which I am suppose to be doing at a local rehabilitation) But I talked my doctor into this seeing the reality in not having to pay a co-pay every visit.
Several of my doctors are not local. My surgeon is in Charlotte and my pain management is in South Carolina. Why so far away? I begged and chased doctors all over 2 states to help me because I was dieing. Sometimes I did not really realize how bad things were. I looked fine so many doctor think I must be fine. So now that I have found doctors that will listen and understand pain that can not be seen I wont change anytime soon.
I'm unable to drive long distances anymore so in the future as my parents age ( and it becomes difficult for them to drive) I will have to look into other forms of transportation. I have an online friend that offered me a bed for the night to recover from the drive down before I have to drive back. She is a great friend and I feel like I have known her forever but it is not right for a basically unknown person to come into her home like that. I told her it was not safe for her to offer such things but her heart is in the right place. I love her dearly for wanting to help.
But do you know what I traded. I don't work. But I am now busier than ever with doctors appointments. You think that is not so bad. But I also have to attend water exercise ( which I am suppose to be doing at a local rehabilitation) But I talked my doctor into this seeing the reality in not having to pay a co-pay every visit.
Several of my doctors are not local. My surgeon is in Charlotte and my pain management is in South Carolina. Why so far away? I begged and chased doctors all over 2 states to help me because I was dieing. Sometimes I did not really realize how bad things were. I looked fine so many doctor think I must be fine. So now that I have found doctors that will listen and understand pain that can not be seen I wont change anytime soon.
I'm unable to drive long distances anymore so in the future as my parents age ( and it becomes difficult for them to drive) I will have to look into other forms of transportation. I have an online friend that offered me a bed for the night to recover from the drive down before I have to drive back. She is a great friend and I feel like I have known her forever but it is not right for a basically unknown person to come into her home like that. I told her it was not safe for her to offer such things but her heart is in the right place. I love her dearly for wanting to help.
Just a few causes from a few of my FB friends
Monica Ball Request to all my hydro peeps: I want to know what caused your hydro or family members hydro...
Tyanna Thomas Diagnosed @ 28. Arachnoid cyst.
10 hours ago ·
Sandi Hoitsma I was born with it but my mom noticed it one nite @ dinner when I was 2 months old.
10 hours ago ·
Alicia Harper Although the exact cause is unknown, a large portion of Braydens brain was destroyed, likely by stroke, in the first trimester. His brain is replaced my sacs of cerebrospinal fluid...you can read more about him at his CB~ http://www.caringbridge.org/visit/braydenharper or learn more about his condition or fin resources/inspiration for parents of children facing terminal prognosis at my personal blog~ http://hydranjourney.blogspot.com
10 hours ago ·
Dave Callan mine arrested when i was a baby but restarted when i got a severe knock to the head
Monica J. Foster I was born with spina bifida which contributed to my hydrocephalus as a baby.
Alicia Harper But I'm also happy to say that after having a VP shunt placed at 1month of age, he has progressed greatly and is doing amazing things despite the grim prognosis!! Nothing short of a miracle ♥
Monica Ball Monica the other conditions related to hydro reall puzzle my brain...Dave I have heard of several people that develope hydro after a head trama
9 hours ago ·
Monica Ball Alicia I was not suppose to walk or be able to correct the damage to my eyes...Doctors don't know it all
9 hours ago ·
Sandi Hoitsma I think we all are miracles!!! I remind myself when things go wrong sometimes that I am lucky to be alive b/c of a shunt :) We all should tell our stories more often.
9 hours ago ·
Dave Callan my parents were told i wouldnt talk read or write
9 hours ago ·
Monica Ball I'm hoping to repost this on my blog... for myself and to show others...this could be you. Just because I look fine does not mean we are fine
9 hours ago ·
Alicia Harper I absolutely agree Sandi, then babies or families facing similar diagnosis would not get only the doom and gloom end of story, but hear the mNy stories of hope and inspiration too!
9 hours ago ·
Sandi Hoitsma that's true monica. Dave, we are all miracles and I am glad you should them otherwise what you can do.
9 hours ago ·
Monica Ball Many babies would be given the choice of life
9 hours ago ·
Denise Cameron Birth defect. SPINA BIFIDA.
9 hours ago ·
Sandi Hoitsma I agree alicia, families need to hear that their babies will live a long life with a shunt and technology that we have now that's out there.
9 hours ago ·
Sara-Lynn Metschke My hydro was caused by something unknown!...
9 hours ago ·
Monica Ball Sara...at birthor as an adult?
9 hours ago ·
Madalyn Russek Hey Monica! It is guessed that my hydro was caused by my aqueductal stenosis. Otherwise it is unknown
9 hours ago ·
Keyt Harrington I was probably born with it, but it wasn't discovered til i was 5 when i had cerebral meningitis. but had loads of other problems from seizures to blindness from day of birth. its rare to have meningitis once, ive had it 4 times!
9 hours ago ·
Monica Ball Keyt...% years with hydro untreated that is scary
9 hours ago ·
Keyt Harrington yup and i died several times too. but, this was the early 70's when no one knew what they were looking at still
9 hours ago ·
Madalyn Russek I completely agree with Monica Keyt! I can understand how hard blindness would be at such a young age
9 hours ago ·
Keyt Harrington No one knew i was blind til i started walking into walls. Fortunately (and unfortunately) my mom was an RN and knew something was up. After the shunt, i was just legally blind, but it was accidentally cured when i was 18
9 hours ago ·
Monica Ball WOW!!!
9 hours ago ·
Keyt Harrington look at all these hydro-related peeps. how'd you get em all monica, i only have a few hahaha
9 hours ago ·
Hope Elizabeth Welker Far's I know, it's congenital acqueductal stenosis, possibly arrested but "awakened" by my high forceps delivery (which also resulted in a subdural hematoma and, more than likely, my epi).
9 hours ago ·
Madalyn Russek Keyt THATS AMAZING! So what was it like being blind then being able to see ?
9 hours ago ·
Monica Ball Keyt number one I started searching online support groups where I found Liz (Hope) who helped me find others... so much of my life I did not know and now I want to know everything...
Liz I was wondering where you were at...
I just wish I hasd half this many following my blog...but how ever I get my message out I am happy
Keyt there are 200 others here on facebook that have not spoke4 up yet
9 hours ago ·
Hope Elizabeth Welker LOL! Busy sending my book to my FB buddies! :D
9 hours ago ·
Monica Ball Madalyn I'm wondering the samething...
9 hours ago ·
Keyt Harrington Well, I'll never forget the day my vision was normal. I could see light and dark and shapes, but nothing else. Both of my eyes crossed into my nose and i got teased all the time, so an eye doc who specialized in treating kids with neuro deficiencies just cut the nerve to one eye so it would go back to "normal". it was an outpatient surgery. Surgery...
See More
was done, then we went to a hotel room and i took a nap. When I woke up, i could see the picture on the wall and screamed for my mom. I described it and she thought i was joking (my dad and I used to play tricks on her all the time) and thought my dad had told me what the picture looked like til I began describing other stuff on the walls. We both just cried for hours. It took me a while to get used to not needing help and i got bad headaches from the colors for a while.
9 hours ago ·
Monica Ball Go Hope!!!! Great job!!!
9 hours ago ·
Hope Elizabeth Welker It's mushy and sad as hell, but anyone who's interested, just holler. :)
9 hours ago ·
Monica Ball I am!!! you know I am!!!
9 hours ago ·
Hope Elizabeth Welker :D Send me your E, and I'll get Part 1 to ya. Gotta feed the husband. :)
9 hours ago ·
Madalyn Russek WOW KEYT !!!! THATS AMAZING!!!!
9 hours ago ·
Keyt Harrington Thanks. I used to consider myself a rarity til i started meeting more people online like on the hyceph-l list or here. Although back when i was a kid it was all much more rare than it is now. I think of all the things i went through and although i wouldnt wish it on anyone, its made me a stronger person in so many ways!!
9 hours ago ·
Monica Ball Keyt...I also had crossed eyes...I had 3 surgeries to fix them...
9 hours ago ·
Debbie Kuminski my hydro is cuz my body produces too much water goes to my brain and stays there so shunt drains it off my brain
9 hours ago ·
Keyt Harrington Monica. I was gonna have both eyes fixed, but he decided just to do one and the other one another time. Turned out the first one was such a miracle the 2nd one wasn't needed
9 hours ago ·
Kathi DeGrand I think Agenesis of the Corpus Callosum....I was just diagnosed w/ ACC this past summer and was reading that the absence of the corpus callosum can cause hydro, so it made sense.
8 hours ago ·
Haylea Lynn Blank I was born premature at 26 weeks. I had a 3rd degree brain bleed, I also discovered when I was 13 years old that I have Dandy-Walker Syndrome (present at birth probably but never told until I was 13) and Agenesis of the Corpus Callosum.
8 hours ago ·
Walter Thomas LIttle Jr Monica mine is congenital. It occurred at birth. Actually it was present at birth and progressed on the next few days. Add to that I was something like six weeks premature and that didn't help matters at all.
8 hours ago ·
Megan M Moore I had an arterio-venous malformation that burst when I was 3 hours old, which caused a stroke. Oddly enough though, my hydro "resolved itself" after 20 or so years, and I've been shunt-free since September 2008. Still waiting to see if it will come back though...
8 hours ago ·
Monica Ball Megan I would not worry enjoy life without a shunt...
8 hours ago ·
Haylea Lynn Blank Hey Megan... I have been living w/o a shunt for 7 years... :) Only a few revisions of the ETV and 2 other procedures b/c of scar tissue and the Dandy-Walker... Occasional Headaches but life is good. :-)
8 hours ago ·
Lynn Dudenhoefer congenital aquaductal stenosis, but not diagnosed until I was 30.
Lynn
7 hours ago ·
Keyt Harrington Wow i recognize some of these names from the hydro list! Ive been a member there forever but dont post much lately. Great to see everyonE. Feel free to add me if you all like i could use more hydro friends like Madalyn =)
7 hours ago ·
Sue Skinner this is fantastc monica, we dont know were my hydro came from i have a blocked third ventricle and n.p hydro which was diagnosed when i was in my late 20s i am 44 now and was shunted 2 yrs ago which caused a major bleed so i also have two burr holes the opposite side of my shunt
about an hour ago ·
Tyanna Thomas Diagnosed @ 28. Arachnoid cyst.
10 hours ago ·
Sandi Hoitsma I was born with it but my mom noticed it one nite @ dinner when I was 2 months old.
10 hours ago ·
Alicia Harper Although the exact cause is unknown, a large portion of Braydens brain was destroyed, likely by stroke, in the first trimester. His brain is replaced my sacs of cerebrospinal fluid...you can read more about him at his CB~ http://www.caringbridge.org/visit/braydenharper or learn more about his condition or fin resources/inspiration for parents of children facing terminal prognosis at my personal blog~ http://hydranjourney.blogspot.com
10 hours ago ·
Dave Callan mine arrested when i was a baby but restarted when i got a severe knock to the head
Monica J. Foster I was born with spina bifida which contributed to my hydrocephalus as a baby.
Alicia Harper But I'm also happy to say that after having a VP shunt placed at 1month of age, he has progressed greatly and is doing amazing things despite the grim prognosis!! Nothing short of a miracle ♥
Monica Ball Monica the other conditions related to hydro reall puzzle my brain...Dave I have heard of several people that develope hydro after a head trama
9 hours ago ·
Monica Ball Alicia I was not suppose to walk or be able to correct the damage to my eyes...Doctors don't know it all
9 hours ago ·
Sandi Hoitsma I think we all are miracles!!! I remind myself when things go wrong sometimes that I am lucky to be alive b/c of a shunt :) We all should tell our stories more often.
9 hours ago ·
Dave Callan my parents were told i wouldnt talk read or write
9 hours ago ·
Monica Ball I'm hoping to repost this on my blog... for myself and to show others...this could be you. Just because I look fine does not mean we are fine
9 hours ago ·
Alicia Harper I absolutely agree Sandi, then babies or families facing similar diagnosis would not get only the doom and gloom end of story, but hear the mNy stories of hope and inspiration too!
9 hours ago ·
Sandi Hoitsma that's true monica. Dave, we are all miracles and I am glad you should them otherwise what you can do.
9 hours ago ·
Monica Ball Many babies would be given the choice of life
9 hours ago ·
Denise Cameron Birth defect. SPINA BIFIDA.
9 hours ago ·
Sandi Hoitsma I agree alicia, families need to hear that their babies will live a long life with a shunt and technology that we have now that's out there.
9 hours ago ·
Sara-Lynn Metschke My hydro was caused by something unknown!...
9 hours ago ·
Monica Ball Sara...at birthor as an adult?
9 hours ago ·
Madalyn Russek Hey Monica! It is guessed that my hydro was caused by my aqueductal stenosis. Otherwise it is unknown
9 hours ago ·
Keyt Harrington I was probably born with it, but it wasn't discovered til i was 5 when i had cerebral meningitis. but had loads of other problems from seizures to blindness from day of birth. its rare to have meningitis once, ive had it 4 times!
9 hours ago ·
Monica Ball Keyt...% years with hydro untreated that is scary
9 hours ago ·
Keyt Harrington yup and i died several times too. but, this was the early 70's when no one knew what they were looking at still
9 hours ago ·
Madalyn Russek I completely agree with Monica Keyt! I can understand how hard blindness would be at such a young age
9 hours ago ·
Keyt Harrington No one knew i was blind til i started walking into walls. Fortunately (and unfortunately) my mom was an RN and knew something was up. After the shunt, i was just legally blind, but it was accidentally cured when i was 18
9 hours ago ·
Monica Ball WOW!!!
9 hours ago ·
Keyt Harrington look at all these hydro-related peeps. how'd you get em all monica, i only have a few hahaha
9 hours ago ·
Hope Elizabeth Welker Far's I know, it's congenital acqueductal stenosis, possibly arrested but "awakened" by my high forceps delivery (which also resulted in a subdural hematoma and, more than likely, my epi).
9 hours ago ·
Madalyn Russek Keyt THATS AMAZING! So what was it like being blind then being able to see ?
9 hours ago ·
Monica Ball Keyt number one I started searching online support groups where I found Liz (Hope) who helped me find others... so much of my life I did not know and now I want to know everything...
Liz I was wondering where you were at...
I just wish I hasd half this many following my blog...but how ever I get my message out I am happy
Keyt there are 200 others here on facebook that have not spoke4 up yet
9 hours ago ·
Hope Elizabeth Welker LOL! Busy sending my book to my FB buddies! :D
9 hours ago ·
Monica Ball Madalyn I'm wondering the samething...
9 hours ago ·
Keyt Harrington Well, I'll never forget the day my vision was normal. I could see light and dark and shapes, but nothing else. Both of my eyes crossed into my nose and i got teased all the time, so an eye doc who specialized in treating kids with neuro deficiencies just cut the nerve to one eye so it would go back to "normal". it was an outpatient surgery. Surgery...
See More
was done, then we went to a hotel room and i took a nap. When I woke up, i could see the picture on the wall and screamed for my mom. I described it and she thought i was joking (my dad and I used to play tricks on her all the time) and thought my dad had told me what the picture looked like til I began describing other stuff on the walls. We both just cried for hours. It took me a while to get used to not needing help and i got bad headaches from the colors for a while.
9 hours ago ·
Monica Ball Go Hope!!!! Great job!!!
9 hours ago ·
Hope Elizabeth Welker It's mushy and sad as hell, but anyone who's interested, just holler. :)
9 hours ago ·
Monica Ball I am!!! you know I am!!!
9 hours ago ·
Hope Elizabeth Welker :D Send me your E, and I'll get Part 1 to ya. Gotta feed the husband. :)
9 hours ago ·
Madalyn Russek WOW KEYT !!!! THATS AMAZING!!!!
9 hours ago ·
Keyt Harrington Thanks. I used to consider myself a rarity til i started meeting more people online like on the hyceph-l list or here. Although back when i was a kid it was all much more rare than it is now. I think of all the things i went through and although i wouldnt wish it on anyone, its made me a stronger person in so many ways!!
9 hours ago ·
Monica Ball Keyt...I also had crossed eyes...I had 3 surgeries to fix them...
9 hours ago ·
Debbie Kuminski my hydro is cuz my body produces too much water goes to my brain and stays there so shunt drains it off my brain
9 hours ago ·
Keyt Harrington Monica. I was gonna have both eyes fixed, but he decided just to do one and the other one another time. Turned out the first one was such a miracle the 2nd one wasn't needed
9 hours ago ·
Kathi DeGrand I think Agenesis of the Corpus Callosum....I was just diagnosed w/ ACC this past summer and was reading that the absence of the corpus callosum can cause hydro, so it made sense.
8 hours ago ·
Haylea Lynn Blank I was born premature at 26 weeks. I had a 3rd degree brain bleed, I also discovered when I was 13 years old that I have Dandy-Walker Syndrome (present at birth probably but never told until I was 13) and Agenesis of the Corpus Callosum.
8 hours ago ·
Walter Thomas LIttle Jr Monica mine is congenital. It occurred at birth. Actually it was present at birth and progressed on the next few days. Add to that I was something like six weeks premature and that didn't help matters at all.
8 hours ago ·
Megan M Moore I had an arterio-venous malformation that burst when I was 3 hours old, which caused a stroke. Oddly enough though, my hydro "resolved itself" after 20 or so years, and I've been shunt-free since September 2008. Still waiting to see if it will come back though...
8 hours ago ·
Monica Ball Megan I would not worry enjoy life without a shunt...
8 hours ago ·
Haylea Lynn Blank Hey Megan... I have been living w/o a shunt for 7 years... :) Only a few revisions of the ETV and 2 other procedures b/c of scar tissue and the Dandy-Walker... Occasional Headaches but life is good. :-)
8 hours ago ·
Lynn Dudenhoefer congenital aquaductal stenosis, but not diagnosed until I was 30.
Lynn
7 hours ago ·
Keyt Harrington Wow i recognize some of these names from the hydro list! Ive been a member there forever but dont post much lately. Great to see everyonE. Feel free to add me if you all like i could use more hydro friends like Madalyn =)
7 hours ago ·
Sue Skinner this is fantastc monica, we dont know were my hydro came from i have a blocked third ventricle and n.p hydro which was diagnosed when i was in my late 20s i am 44 now and was shunted 2 yrs ago which caused a major bleed so i also have two burr holes the opposite side of my shunt
about an hour ago ·
Monday, January 11, 2010
I have hydro,hydro doesn't have me
I will always have hydrocephalus just like the millions of others that have this condition. I face numerous surgeries in my life time. But as someone with this condition I accept the things I have to do to stay alive.
But I blog to tell my story. I blog so we will find a cure. There will never be a cure for the ones of us that already have this condition. But I pray for a cure for the babies not born yet that my voice will be heard to keep another child from suffering.
I will take on more surgeries if it means that someone will not have to live this life.
But I blog to tell my story. I blog so we will find a cure. There will never be a cure for the ones of us that already have this condition. But I pray for a cure for the babies not born yet that my voice will be heard to keep another child from suffering.
I will take on more surgeries if it means that someone will not have to live this life.
Tuesday, January 5, 2010
WNC Brain Tumor Support Group
For several months probably a year maybe more I have been looking at a group I found online WNC Brain Tumor Support Group. With it being a new year and also over a year since my last surgery I thought it might be a good idea to look into finding other people like me. Or at least people that can understand what I have faced and maybe others that know about hydrocephalus and how I came to have it after my brain tumor surgery.
So I contacted the group to see what the founder thought about me attending a meeting. I was greeted with open arms. And was even ask some questions about my hydro. The meeting is toward the last of this month and I am looking forward to being able to attend.
When I blog I mostly blog about hydrocephalus because it has been such a major part of my life. But what I forget to mention is the brain tumor that started this journey of mine.
So I contacted the group to see what the founder thought about me attending a meeting. I was greeted with open arms. And was even ask some questions about my hydro. The meeting is toward the last of this month and I am looking forward to being able to attend.
When I blog I mostly blog about hydrocephalus because it has been such a major part of my life. But what I forget to mention is the brain tumor that started this journey of mine.
Monday, January 4, 2010
Still feeling the effects
I have decided that taking the tree down has give me problems. I ended up sleeping most of the day yesterday which this has not happened for a while. But it happens when I have pushed my self to my physical limits. I slept nearly 20 hours I would wake up to just fall back to sleep within minutes. Pepper did not even get me up for breakfast.
When I did roll out I just wanted to lay back down but Pepper had to have his insulin and pain medicine.
I am still super fatigued and have the shaky low sugar feeling. But I am not in full tremor. I wish I had blogged during the 8 years of faulty shunts and programmables to be able to look back and see how bad they were back then. Just to compair. It is really irritating but it is nothing like it was 2 years ago when I had the programmable shunt.
I did too much trying to get decorations down and now I'm paying for it...
When I did roll out I just wanted to lay back down but Pepper had to have his insulin and pain medicine.
I am still super fatigued and have the shaky low sugar feeling. But I am not in full tremor. I wish I had blogged during the 8 years of faulty shunts and programmables to be able to look back and see how bad they were back then. Just to compair. It is really irritating but it is nothing like it was 2 years ago when I had the programmable shunt.
I did too much trying to get decorations down and now I'm paying for it...
Saturday, January 2, 2010
Why Pepper Knows Best
Today is a great example of my blog title "Pepper Knows Best." Today I took down my Christmas tree ( with help). Which I have done quite a bit of bending over. I thought I was having low sugar so I have eat and it does not help. I just have a shaky feeling all over.
Pepper has seen me at my worst and would not leave my side for anything or anyone. He also showed odd signs when I had a faulty shunt. I did not realize it at the time.
So my parents and Steph left and I think I will go get on the computer for a bit. But Pepper sits at my feet scratching and whining. You also have to realize he has a lame hip also and been wanting extra attention. But this was different.
I finally get the message and we are going to go lay down now. My head hurts but no more than usual. I just wonder with all the de-decorating if I have messed with my shunt or rather CSF level. Remember I have a non programmable now so not real sure how things like this could effect the shunt.
I don't have tremors like I have in the past just feel like I have the worst low sugar feeling.
Pepper has seen me at my worst and would not leave my side for anything or anyone. He also showed odd signs when I had a faulty shunt. I did not realize it at the time.
So my parents and Steph left and I think I will go get on the computer for a bit. But Pepper sits at my feet scratching and whining. You also have to realize he has a lame hip also and been wanting extra attention. But this was different.
I finally get the message and we are going to go lay down now. My head hurts but no more than usual. I just wonder with all the de-decorating if I have messed with my shunt or rather CSF level. Remember I have a non programmable now so not real sure how things like this could effect the shunt.
I don't have tremors like I have in the past just feel like I have the worst low sugar feeling.
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