Who you are isn't the clothes you wear,
Or the way you do your hair
Who you are is the person you choose to be
No matter what People want to see
Who you are is you
So Please
just
Stay
True,
-Hayley,
Joanna's Daughter (:
this literally took me 2 minutes:D
Thursday, April 28, 2011
Wednesday, April 27, 2011
Neurogenic bladder
Unfortunately many of us suffer from some type of bladder issue due to m.s. This is known as Neurogenic bladder wiki explains it as.. dysfunction of the urinary bladder due to disease of the central nervous system or peripheral nerves involved in the control of micturition (urination).
[edit] Causes
Neurogenic bladder is often associated with spinal cord diseases (such as Syringomyelia/Hydromyelia), injuries, and neural tube defects including spina bifida. It may also be caused by brain tumors and other diseases of the brain, and by peripheral nerve diseases. It is a common complication of major surgery in the pelvis, such as for removal of sacrococcygeal teratoma and other tumors.
[edit] Treatments
Neurogenic bladder usually causes difficulty or full inability to pass urine without use of a catheter or other method. Catheterization methods range from intermittent catheterization, which involves no surgery or permanenty http://www.blogger.com/img/blank.gifattached appliances, to the creation of a stoma, which bypasses the urethra to empty the bladder directly.
There is also another treatment method provided here from our resident nurse Michelle.
Michelle Spagnuolo-Shiner
Great Info! This will go into all types of treatments, Pay attention to bladder re-training, pelvic floor exercises, bio-feedback, vaginal weight training and electrode stimulation for treatment options of a Nerurogenic bladder. I had all these treatments to fix mine and have had no issues since. It prevented surgery and wearing a pad or diaper. They are easy to do and most insurance will cover all of them. It was way better than taking the horrible meds they have for it and all of them have horrible side effects.
Thanks Michelle this is need to know information!
[edit] Causes
Neurogenic bladder is often associated with spinal cord diseases (such as Syringomyelia/Hydromyelia), injuries, and neural tube defects including spina bifida. It may also be caused by brain tumors and other diseases of the brain, and by peripheral nerve diseases. It is a common complication of major surgery in the pelvis, such as for removal of sacrococcygeal teratoma and other tumors.
[edit] Treatments
Neurogenic bladder usually causes difficulty or full inability to pass urine without use of a catheter or other method. Catheterization methods range from intermittent catheterization, which involves no surgery or permanenty http://www.blogger.com/img/blank.gifattached appliances, to the creation of a stoma, which bypasses the urethra to empty the bladder directly.
There is also another treatment method provided here from our resident nurse Michelle.
Michelle Spagnuolo-Shiner
Great Info! This will go into all types of treatments, Pay attention to bladder re-training, pelvic floor exercises, bio-feedback, vaginal weight training and electrode stimulation for treatment options of a Nerurogenic bladder. I had all these treatments to fix mine and have had no issues since. It prevented surgery and wearing a pad or diaper. They are easy to do and most insurance will cover all of them. It was way better than taking the horrible meds they have for it and all of them have horrible side effects.
Thanks Michelle this is need to know information!
quotes from Karma
*SELF-PITY IS OUR WORST ENEMY AND IF WE YIELD 2 IT WE CAN NEVER DO ANYTHING WISE IN THIS WORLD*
*I AM ON HERE I HAVE MS JUST LIKE EVERYONE ELSE ON THIS PAGE 2 GIVE ENCOURAGING WORDS CAUSE FOLKS NEED 2 HERE AND THROWING A PITY PARTY IS NOT GOING 2 HELP U 1 BIT IF U ARE U ARE ONLY HURTING URSELF NO ITS NOT EASY HAVING MS BUT THAT DONT MEAN FEELING SORRY 4 URSELF U HAVE 2 HAVE FAITH AND BELIEVE U WILL BE HEALED IF U THROWING A PITY PARTY U NEED 2 THINK AGAIN CHANGE UR MIND SET MAKE UR NEGATIVE THOUGHTS BE POSITIVE THOUGHTS THATS WHAT SATAN WANTS U 2 DO IS FEEL SORRY 4 URSELF U PICK URSELF UP AND PRESS ON*
*JUST BECAUSE U SEE SOMEONE WHO HAS MS AND THEY ARE GOING THREW HELL WITH MS DOESNT MEAN U WILL EVERYBODY IS DIFFERENT U CANT LOOK AT SOMEONE AND SAY I HOPE I DONT BE LIKE THAT STOP THINKING NEGATIVE U WISHING BAD ON URSELF AGAIN U HAVE 2 WATCH WHAT U SAY AND WHAT COME OUT UR MOUTH HAVE FAITH AND PRESS ON OK YEA WE HAVE MS BUT THAT DOESNT MEAN WE HAVE 2 HAVE OUR HEAD DOWN THROW A PITY PARTY BABY U STILL HERE U ARE 2 BE (THANKING GOD)*
*I AM ON HERE I HAVE MS JUST LIKE EVERYONE ELSE ON THIS PAGE 2 GIVE ENCOURAGING WORDS CAUSE FOLKS NEED 2 HERE AND THROWING A PITY PARTY IS NOT GOING 2 HELP U 1 BIT IF U ARE U ARE ONLY HURTING URSELF NO ITS NOT EASY HAVING MS BUT THAT DONT MEAN FEELING SORRY 4 URSELF U HAVE 2 HAVE FAITH AND BELIEVE U WILL BE HEALED IF U THROWING A PITY PARTY U NEED 2 THINK AGAIN CHANGE UR MIND SET MAKE UR NEGATIVE THOUGHTS BE POSITIVE THOUGHTS THATS WHAT SATAN WANTS U 2 DO IS FEEL SORRY 4 URSELF U PICK URSELF UP AND PRESS ON*
*JUST BECAUSE U SEE SOMEONE WHO HAS MS AND THEY ARE GOING THREW HELL WITH MS DOESNT MEAN U WILL EVERYBODY IS DIFFERENT U CANT LOOK AT SOMEONE AND SAY I HOPE I DONT BE LIKE THAT STOP THINKING NEGATIVE U WISHING BAD ON URSELF AGAIN U HAVE 2 WATCH WHAT U SAY AND WHAT COME OUT UR MOUTH HAVE FAITH AND PRESS ON OK YEA WE HAVE MS BUT THAT DOESNT MEAN WE HAVE 2 HAVE OUR HEAD DOWN THROW A PITY PARTY BABY U STILL HERE U ARE 2 BE (THANKING GOD)*
Monday, April 18, 2011
cognition help by Krista Olson
I wanted to post something about cognition. I do not know where I saw it, but I saw that you had concerns about mild cognitive changes. Please forgive me for the therapist talk. MS does cause mild cognitive changes as well as our medications, fatigue, mental health, and overall medical status. Your cognitive functioning may fluctuate especially during times when your MS worsens. Common complaints I see and experience as well as problems with short term memory, organizing your thoughts, thinking of words you want to say, trouble concentrating/paying attention, being easily distracted, and problems completing tasks to name a few.
What I recommend for high level patients like myself and most of us is to first look at what kind of phone do you have. Most of us have some type of smart phone, i.e. i-phone, blackberry, droid,or even a phone with internet access. If you have a phone with internet access or a smart phone, you have access to a calender with an alarm feature. Highly recommend it. If you do not know where it is, take it to the store where you got it and they can help you. I also recommend downloading some applications for your phone. There are many out there that can help with storing your medical information, taking notes, and even recording conversations. If you do not want to use a phone, a good planner with a section for notes works to as well. Get used to writing things down and making lists to help you remember things. Routine, structure, and organization is the key. I have a list of my medications on my phone. I recommend that people make a list of questions they have before going to the doctor and recording the discussion with the physician. If you need to, have then print answers to your questions. Yes, they can and will do this. If they don't you need a new doctor.
If you want to do things to target your cognition, there are brain exercises/ cognitive games on the computer. Google brain games or cognitive games, and some of them are even free. A higher level one that I recommend that people consider purchase is Luminosity. The app only cost .99 cents on my phone, and you can purchase the full program on your computer. It is not very expensive. Search MS sites to as well because I have found cognitive games on them as well. If computer is not your thing, even playing board games, scrabble, and others such as outburst, etc. can help with cognitive functioning. If you do not use it you lose it. Crossword puzzles are also good as well as that puzzle game that people are playing. I forget the name, but it is something asian sounding. Sorry for the long post, but I hope this helps someone. If you are have fluctuations, you are not crazy and remember it will fluctuate and worsen depending on how you are feeling overall.
Sorry for the long post. I am a speech pathologist, and we are very verbose by nature.
What I recommend for high level patients like myself and most of us is to first look at what kind of phone do you have. Most of us have some type of smart phone, i.e. i-phone, blackberry, droid,or even a phone with internet access. If you have a phone with internet access or a smart phone, you have access to a calender with an alarm feature. Highly recommend it. If you do not know where it is, take it to the store where you got it and they can help you. I also recommend downloading some applications for your phone. There are many out there that can help with storing your medical information, taking notes, and even recording conversations. If you do not want to use a phone, a good planner with a section for notes works to as well. Get used to writing things down and making lists to help you remember things. Routine, structure, and organization is the key. I have a list of my medications on my phone. I recommend that people make a list of questions they have before going to the doctor and recording the discussion with the physician. If you need to, have then print answers to your questions. Yes, they can and will do this. If they don't you need a new doctor.
If you want to do things to target your cognition, there are brain exercises/ cognitive games on the computer. Google brain games or cognitive games, and some of them are even free. A higher level one that I recommend that people consider purchase is Luminosity. The app only cost .99 cents on my phone, and you can purchase the full program on your computer. It is not very expensive. Search MS sites to as well because I have found cognitive games on them as well. If computer is not your thing, even playing board games, scrabble, and others such as outburst, etc. can help with cognitive functioning. If you do not use it you lose it. Crossword puzzles are also good as well as that puzzle game that people are playing. I forget the name, but it is something asian sounding. Sorry for the long post, but I hope this helps someone. If you are have fluctuations, you are not crazy and remember it will fluctuate and worsen depending on how you are feeling overall.
Sorry for the long post. I am a speech pathologist, and we are very verbose by nature.
Sunday, April 17, 2011
seeing is not believing
"Seeing is NOT Believing" Poem
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
seep
"Seeing is NOT Believing" Poem
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
Saturday, April 2, 2011
Your will, faith, courage, love never ceases to amaze me
Sitting here thinking about our latest trip to the hospital and the fact that you are joking with nurses , put the moves on the security guard while telling the nurse you prefer the good looking security guard pushes your bed down to xray brings a smile to my face ! Your breathing was irregular , and they had to unhook you in order to get you to radiology, and you still flirt !!! Are you serious??? You are a true inspiration , my hero . Of course you get some negativity going on after being continuously poked with needles , and listening to them tell you that there is yet another issue with your health , but amazingly are still able to smile , to joke , to love . Your accepting whatever comes at you will always be with me , I only wish I could accept these things with your grace ! I however get angry , Angry that you feel as though the doctors think you cry wolf, angry that they aren't more compassionate to your fight , and will to live , angry that when there's something wrong and you know it but feel guilty for saying so . I am a warrior for your health , I will stand by you , support you , FIGHT FOR YOU WITH ALL I HAVE !!! You are my mother and I love you with all I have in me ! I'm here , I will be here , I'm not going anywhere . Promises Ive made I will stand by , for if the shoe were on the other foot I know you would fight for me , as you have done so many times in past . I love you !
Christine Trumbull, caretaker extraordinaire!
Christine Trumbull, caretaker extraordinaire!
Friday, April 1, 2011
m.s. story
MS Story (A Poem)
One Night, before bed
There was double-vision in my eye.
It was a little blurry,
But just enough to ask, why?
When I woke the next day,
The blurriness was gone.
I felt my concerns
Were basically wrong.
Then a few weeks later,
I lost my grip.
I dropped my glass
And started to trip.
I thought, “How clumsy of me,
To drop that glass,
To lose my balance
And land on my ass.”
But I shrugged it off
As if I had a bad day.
Pushed it from my mind
And went on my way.
Then one morning,
My legs felt weak.
My hands had tingles
And I stuttered to speak.
That’s when all the weeks
Of excuses came rushing back.
Each moment crystal clear,
As if I had kept track.
Something was wrong.
I knew it in my heart.
That this meant something,
It all played a part.
I was weak and I stumbled,
Exhausted and confused.
My body was trying to tell me,
Inside it was being abused.
Alarm, fear & panic,
Lead to the hospital’s ER.
Which lead to a neuro,
Where the tests would start.
Words & possibilities
All thrown about,
Like Lyme disease & Lupus
So many seeds of doubt.
In the end came the news,
Multiple Sclerosis is the name.
From now on my life
Will never be the same.
I buried myself in books
And internet links.
Different vitamins & shots,
New pills & veins with kinks.
I was overwhelmed with info,
Not sure where to turn.
Friends & family staying close,
But there was so much to learn.
Inside my head was swimming.
What does this all mean?
How much will my life change?
Is it as bad as it seems?
I made tough decisions
And chose my own way.
Some friends disagreed
And wanted to have their say.
Some friends stopped calling,
They weren’t on my side.
MS was too scary for them.
It was easier to hide.
But I cannot hide,
MS is always there.
I have to face it,
No matter how scared.
Each day I wake up,
MS is still there.
Physically & mentally,
Life seems so unfair.
I cried & I mourned
For my life & past dreams.
I found my future changing
So much I wanted to scream.
Then one day I woke up,
And decided I needed to change.
To find a better attitude
In my new body so strange.
I found a way to face it.
To live my life with less regret,
To get a better perspective,
My life is not over yet.
I dreamed of a new future.
Found a way for my heart to mend.
Started living my life on my terms,
Because this is not the end.
~Tammy Malkowski 3/12/2011
One Night, before bed
There was double-vision in my eye.
It was a little blurry,
But just enough to ask, why?
When I woke the next day,
The blurriness was gone.
I felt my concerns
Were basically wrong.
Then a few weeks later,
I lost my grip.
I dropped my glass
And started to trip.
I thought, “How clumsy of me,
To drop that glass,
To lose my balance
And land on my ass.”
But I shrugged it off
As if I had a bad day.
Pushed it from my mind
And went on my way.
Then one morning,
My legs felt weak.
My hands had tingles
And I stuttered to speak.
That’s when all the weeks
Of excuses came rushing back.
Each moment crystal clear,
As if I had kept track.
Something was wrong.
I knew it in my heart.
That this meant something,
It all played a part.
I was weak and I stumbled,
Exhausted and confused.
My body was trying to tell me,
Inside it was being abused.
Alarm, fear & panic,
Lead to the hospital’s ER.
Which lead to a neuro,
Where the tests would start.
Words & possibilities
All thrown about,
Like Lyme disease & Lupus
So many seeds of doubt.
In the end came the news,
Multiple Sclerosis is the name.
From now on my life
Will never be the same.
I buried myself in books
And internet links.
Different vitamins & shots,
New pills & veins with kinks.
I was overwhelmed with info,
Not sure where to turn.
Friends & family staying close,
But there was so much to learn.
Inside my head was swimming.
What does this all mean?
How much will my life change?
Is it as bad as it seems?
I made tough decisions
And chose my own way.
Some friends disagreed
And wanted to have their say.
Some friends stopped calling,
They weren’t on my side.
MS was too scary for them.
It was easier to hide.
But I cannot hide,
MS is always there.
I have to face it,
No matter how scared.
Each day I wake up,
MS is still there.
Physically & mentally,
Life seems so unfair.
I cried & I mourned
For my life & past dreams.
I found my future changing
So much I wanted to scream.
Then one day I woke up,
And decided I needed to change.
To find a better attitude
In my new body so strange.
I found a way to face it.
To live my life with less regret,
To get a better perspective,
My life is not over yet.
I dreamed of a new future.
Found a way for my heart to mend.
Started living my life on my terms,
Because this is not the end.
~Tammy Malkowski 3/12/2011
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