Just wondering where all of our awesome writers are??? I miss reading the stories, the poems, the heart felt words to each of us. So. . . if you are out there and you are reading this. . . it is time to post.
Thanks, Leola
Friday, November 4, 2011
Monday, August 29, 2011
Tuesday, August 16, 2011
Living a day with MS
I have not posted in awhile but felt it was time. Traveling for the past 4 months has really shown me the difficulties, and yet the triumphs of living each day one day at a time. As we journeyed towards California this summer I experienced some wonderful times and some low times. I would not know each day how the day was going to proceed. Just small things such as "parking" an RV a long way from the door to the restaurant or the service station made it quite a trek to get places. The constant climbing in and out of the cab became wearisome. When my eyes decided to double, as they often do, I could not follow the map or follow the beautiful countryside. There were days that fatigue would set in and lethargy. BUT. . .
On a lighter note; I was able to see my family. We spent months playing with the grandbabies. Helping out our daughter in her business. Baking cookies. Visiting the wonderful mountains and rivers and lakes around Northern California.
My words to you today; DON'T LET YOUR DREAMS FADE. Just because you are having a bad day today does not mean you will have one tomorrow. When you are feeling great, get out and enjoy it. When the rough times hit you as they are sure to do, lay back, relax, soak in a good book and warm bath and allow your body to recover. Just know that this too will pass and tomorrow might be the best day yet.
Thanks for listening,
Leola
On a lighter note; I was able to see my family. We spent months playing with the grandbabies. Helping out our daughter in her business. Baking cookies. Visiting the wonderful mountains and rivers and lakes around Northern California.
My words to you today; DON'T LET YOUR DREAMS FADE. Just because you are having a bad day today does not mean you will have one tomorrow. When you are feeling great, get out and enjoy it. When the rough times hit you as they are sure to do, lay back, relax, soak in a good book and warm bath and allow your body to recover. Just know that this too will pass and tomorrow might be the best day yet.
Thanks for listening,
Leola
Monday, August 1, 2011
poem from Karma Jones
*There may be times when you feel
as if you have taken a million steps towards
your dreams, and acted on your plans, only to find
yourself in the same place that you began from.
At times like this, you must not give up.
You must continue on. Though you may feel
lost, bewildered, and alone, continue to believe
in yourself. Do not allow discouragement and
doubt to blur your vision and wash away
your dreams. Visualize your way beyond the
detours, standstills, and obstacles.
You will realize your dreams. You have
worked hard and taken so many productive
steps in a positive direction that you are bound
to succeed. Whatever the hurt of the moment
may be, it will pass. Tomorrow is always a
new dawn. Today, you must pause, rest, catch
your breath, and then look ahead. Each step
will bring you closer to your dreams. The
rainbows and the love that you deserve are in
sight. Happiness is just around the next turn. *
as if you have taken a million steps towards
your dreams, and acted on your plans, only to find
yourself in the same place that you began from.
At times like this, you must not give up.
You must continue on. Though you may feel
lost, bewildered, and alone, continue to believe
in yourself. Do not allow discouragement and
doubt to blur your vision and wash away
your dreams. Visualize your way beyond the
detours, standstills, and obstacles.
You will realize your dreams. You have
worked hard and taken so many productive
steps in a positive direction that you are bound
to succeed. Whatever the hurt of the moment
may be, it will pass. Tomorrow is always a
new dawn. Today, you must pause, rest, catch
your breath, and then look ahead. Each step
will bring you closer to your dreams. The
rainbows and the love that you deserve are in
sight. Happiness is just around the next turn. *
Thursday, June 30, 2011
poem from Karma Jones
"When things go wrong as they sometimes will,
When the road you're trudging seems all up hill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow,
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit."
When the road you're trudging seems all up hill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow,
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit."
Wednesday, June 22, 2011
Quotes from Karma
*BEING DEFEATED IS OFTEN A TEMPORARY CONDITION, GIVING UP IS WHAT MAKES IT PERMANENT*
Thursday, June 9, 2011
poem by Marianne
Marianne Maserati
You can cry all the tears in your eyes
until all tears are wept.
You can rest all the hours of the day
until all sleep is slept.
You can talk all the words that you know
until all words are told.
You can fight tooth and nail with your will,
hold your head up so bold.
You can take all the drugs on the shelf,
jab your skin till it's raw.
You can spend all the cash in your bank
on a miracle cure.
You can bury your head in some game,
hide a while - for a day.
You can lift up your head to the sky,
find some hope, you can pray.
You can learn all the facts you can find -
all the books you can buy.
You can drink all the booze in the bar,
drain the bottles all dry.
Still the beast feeds itself on your brain
and it won't go away.
And it is you, my friend, understand
that the beast's here to stay.
It's not over for you, not this time,
and you've still much to give.
And there's still so much love in your heart
and so much life to live.
And the beast won't define you at all,
you must be who you are.
In your soul there's a spirit of love
so just make it go far.
You can cry all the tears in your eyes
until all tears are wept.
You can rest all the hours of the day
until all sleep is slept.
You can talk all the words that you know
until all words are told.
You can fight tooth and nail with your will,
hold your head up so bold.
You can take all the drugs on the shelf,
jab your skin till it's raw.
You can spend all the cash in your bank
on a miracle cure.
You can bury your head in some game,
hide a while - for a day.
You can lift up your head to the sky,
find some hope, you can pray.
You can learn all the facts you can find -
all the books you can buy.
You can drink all the booze in the bar,
drain the bottles all dry.
Still the beast feeds itself on your brain
and it won't go away.
And it is you, my friend, understand
that the beast's here to stay.
It's not over for you, not this time,
and you've still much to give.
And there's still so much love in your heart
and so much life to live.
And the beast won't define you at all,
you must be who you are.
In your soul there's a spirit of love
so just make it go far.
we are m.s. by Marianne Maseratti
We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out... to the Church or Temple every weekend; we are your peers; we are human beings.
We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.
Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.
Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"
Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."
We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Every person. We are the People with Multiple Sclerosis. We are People, Just Like You....
We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.
Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.
Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"
Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."
We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Every person. We are the People with Multiple Sclerosis. We are People, Just Like You....
Thursday, June 2, 2011
Today is not the best
Today is not the best day
Why should I let it stay?
I will choose to chase it away
For MS will not have its way.
I might cry, pout and complain
But really why let it have its way?
MS is not my life, my wants, my desires.
I will not let it beat me down.
I am far more than all of that
I will not succumb to even a "tat
As I feel myself giving into this disease
My mind tries to fight with all its ease.
I fight, scream and fall
"Get me out of this somehow"
MS is not my life, my wants, my desires
I will not let it beat me down.
As I ponder this dilemma
I know that I am in a better place
So change your thinking into good
Then you can go on with your life just as you should
Why should I let it stay?
I will choose to chase it away
For MS will not have its way.
I might cry, pout and complain
But really why let it have its way?
MS is not my life, my wants, my desires.
I will not let it beat me down.
I am far more than all of that
I will not succumb to even a "tat
As I feel myself giving into this disease
My mind tries to fight with all its ease.
I fight, scream and fall
"Get me out of this somehow"
MS is not my life, my wants, my desires
I will not let it beat me down.
As I ponder this dilemma
I know that I am in a better place
So change your thinking into good
Then you can go on with your life just as you should
poem by Tyah
Tyah Butler
I am woman,
Proud and free,
More to me,
Than what you see,
I stand alone,
A world apart,
Just holding fast,
To wayward heart.
I am healer,
Poet too,
I see colour,
Rainbow hue,
All at one,
With God above,
Forever bright,
Eternal love.
I am fire,
Burning gold,
Cold as ice,
If truth be told,
Just a spark,
Light a flame,
Glowing embers,
Die again.
I am woman,
Proud and free,
More to me,
Than what you see,
I stand alone,
A world apart,
Just holding fast,
To wayward heart.
I am healer,
Poet too,
I see colour,
Rainbow hue,
All at one,
With God above,
Forever bright,
Eternal love.
I am fire,
Burning gold,
Cold as ice,
If truth be told,
Just a spark,
Light a flame,
Glowing embers,
Die again.
Wednesday, June 1, 2011
Poem by Cathy Herndon...
If Tomorrow Starts Without Me
If tomorrow starts without me, and I’m not there to see,
If the sun should rise and find your eyes all filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
while thinking of the many things we didn’t get to say.
I know how much you care for me, and how much I care for you,
and each time that you think of me I know you’ll miss me too;
But when tomorrow starts without me, please try to understand,
that an angel came and called my name and took me by the hand,
and said my place was ready in heaven far above,
and that I’d have to leave behind all those I dearly love.
But as I turned to walk away, a tear fell from my eye,
for all life, I’d always thought I didn’t want to die.
I had so much to live for and so much yet to do.
it seemed almost impossible that I was leaving you.
I thought of all the love we shared and all the fun we had.
If I could relive yesterday, I thought, just for a while,
I’d say goodbye and hug you and maybe see you smile.
But then I fully realised that this could never be,
for emptiness and memories would take the place of me.
And when I thought of worldly things that I’d miss come tomorrow.
I thought of you, and when I did, my heart was filled with sorrow.
But when I walked through Heaven’s gates, I felt so much at home.
When God looked down and smiled at me, from His great golden throne,
He said, "This is eternity and all I’ve promised you,
Today your life on earth is past but here it’s starts anew.
I promise no tomorrow, but today will always last.
and since each day’s the same, there’s no longing for the past.
But you have been so faithful, so trusting, so true.
Though there were times you did some things you knew you shouldn’t do.
And you have been forgiven and now at last you’re free.
So won’t you come and take my hand and share my life with me?"
So if tomorrow starts without me, don’t think we’re far apart,
for every time you think of me, please know I’m in your heart.
If tomorrow starts without me, and I’m not there to see,
If the sun should rise and find your eyes all filled with tears for me;
I wish so much you wouldn’t cry the way you did today,
while thinking of the many things we didn’t get to say.
I know how much you care for me, and how much I care for you,
and each time that you think of me I know you’ll miss me too;
But when tomorrow starts without me, please try to understand,
that an angel came and called my name and took me by the hand,
and said my place was ready in heaven far above,
and that I’d have to leave behind all those I dearly love.
But as I turned to walk away, a tear fell from my eye,
for all life, I’d always thought I didn’t want to die.
I had so much to live for and so much yet to do.
it seemed almost impossible that I was leaving you.
I thought of all the love we shared and all the fun we had.
If I could relive yesterday, I thought, just for a while,
I’d say goodbye and hug you and maybe see you smile.
But then I fully realised that this could never be,
for emptiness and memories would take the place of me.
And when I thought of worldly things that I’d miss come tomorrow.
I thought of you, and when I did, my heart was filled with sorrow.
But when I walked through Heaven’s gates, I felt so much at home.
When God looked down and smiled at me, from His great golden throne,
He said, "This is eternity and all I’ve promised you,
Today your life on earth is past but here it’s starts anew.
I promise no tomorrow, but today will always last.
and since each day’s the same, there’s no longing for the past.
But you have been so faithful, so trusting, so true.
Though there were times you did some things you knew you shouldn’t do.
And you have been forgiven and now at last you’re free.
So won’t you come and take my hand and share my life with me?"
So if tomorrow starts without me, don’t think we’re far apart,
for every time you think of me, please know I’m in your heart.
Friday, May 20, 2011
Thoughts for life
I am sitting here in a hotel in Arkansas. I have been visiting my 97 year old grandmother. As I listened to her telling stories of my childhood it brought such warm feelings to my soul and spirit. How is it that we get so busy with life that we forget what life is about? How is it that we do not find time to say "I love you" to those we care about? Makes me ponder the impression that I am leaving behind. Will my children and grandchildren have fond stories to pass down the family tree? Will they get together "just because" and visit and share memories with one another? As I look at this disease, I say, "This will not get me down". I will live each day with purpose!!! I will make the best of all situations. I will record my thoughts and feelings more often and share those thoughts with others. I will be an inspiration to others who are crossing my path. Won't you join me in this endeavor?
Tuesday, May 10, 2011
quotes from Karma
Karma Mzred
*I'M A MULTIPLE SCLEROSIS SURVIVOR*
I WALK CAUSE I'M A MULTIPLE SCLEROSIS SURVIVOR
I WALK 4 OTHER MSER'S 2 GIVE THEM LOVE & STRENGTH
I WALK 4 MOTHERS,GRANDMOTHERS,FRIENDS,SONS,DAUGHTERS,UNCLE WHO'S LIVES HAVE BEEN TOUCHED BY MULTIPLE SCLEROSIS AND THE ONES WHOSE HAVE LOST LOVE ONES ALONG THE WAY
I WALK BECAUSE I AM AN INSPIRATION
I WALK CAUSE I BELIEVE
(I BELIEVE IN A CURE)
*WHEN U ARE HAVING A TERRIBLE DAY WITH (MS) JUST REMEMBER ITS ALWAYS TOMORROW AND IT WILL BE THE BEST DAY OF UR LIFE WE WILL MAKE IT*
*I'M A MULTIPLE SCLEROSIS SURVIVOR*
I WALK CAUSE I'M A MULTIPLE SCLEROSIS SURVIVOR
I WALK 4 OTHER MSER'S 2 GIVE THEM LOVE & STRENGTH
I WALK 4 MOTHERS,GRANDMOTHERS,FRIENDS,SONS,DAUGHTERS,UNCLE WHO'S LIVES HAVE BEEN TOUCHED BY MULTIPLE SCLEROSIS AND THE ONES WHOSE HAVE LOST LOVE ONES ALONG THE WAY
I WALK BECAUSE I AM AN INSPIRATION
I WALK CAUSE I BELIEVE
(I BELIEVE IN A CURE)
*WHEN U ARE HAVING A TERRIBLE DAY WITH (MS) JUST REMEMBER ITS ALWAYS TOMORROW AND IT WILL BE THE BEST DAY OF UR LIFE WE WILL MAKE IT*
Thursday, April 28, 2011
Who you are.
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
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
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
Friday, March 25, 2011
poem by karma!
*(A GIFT FROM GOD)*
BY:KARMA MZRED
2 PEOPLE THINK I'M CRAZY
I THANK (GOD) 4 MY GIFT
EVEN WITH THIS DEMON INSIDE ME (MULTIPLE SCLEROSIS)
ACT UP EVERYDAY I STILL HAVE MY GIFT FROM (GOD)
LIFE HAS IT'S UPS ,YES IT HAS IT'S DOWN
IT HAS GIVEN ME THE ABILITY
2 LAUGH THROUGH ALL THE FROWNS
AND THE TIMES I WANTED 2 GIVE UP
MY GIFT FROM (GOD) IS A TREASURE
I CELEBRATE EVERYDAY
I LIVE MY LIFE AS BEST AS I CAN,HELP OTHERS ON MY WAY
IT IS A CHALLENGE LIVING WITH (MULTIPLE SCLEROSIS)
ACCEPT IT AND NO MATTER WHAT FORM IT TAKES
BUT IT'S A NEW LIFE
BUT I TRULY LEARNED HOW 2 LIVE WITH (MULTIPLE SCLEROSIS)
UR LIFE IS NOT OVER
BY:KARMA MZRED
2 PEOPLE THINK I'M CRAZY
I THANK (GOD) 4 MY GIFT
EVEN WITH THIS DEMON INSIDE ME (MULTIPLE SCLEROSIS)
ACT UP EVERYDAY I STILL HAVE MY GIFT FROM (GOD)
LIFE HAS IT'S UPS ,YES IT HAS IT'S DOWN
IT HAS GIVEN ME THE ABILITY
2 LAUGH THROUGH ALL THE FROWNS
AND THE TIMES I WANTED 2 GIVE UP
MY GIFT FROM (GOD) IS A TREASURE
I CELEBRATE EVERYDAY
I LIVE MY LIFE AS BEST AS I CAN,HELP OTHERS ON MY WAY
IT IS A CHALLENGE LIVING WITH (MULTIPLE SCLEROSIS)
ACCEPT IT AND NO MATTER WHAT FORM IT TAKES
BUT IT'S A NEW LIFE
BUT I TRULY LEARNED HOW 2 LIVE WITH (MULTIPLE SCLEROSIS)
UR LIFE IS NOT OVER
Sunday, March 20, 2011
via Lisa Morris
MS makes it's attack on me
Whack after whack, oh where can I flee?
My body feels weak, my movements so slow,
I duck and I dive to avoid the next blow,
It beats me up. I'm black and blue,
Nine rounds with Mike Tyson,
how many more can I do?
My body is numb, I start to shake,
Please Rescue me, I need a break!
But no one hears my desperate plea,
So I have to search inside of me,
I reach inside, what can I find?
A Will to Live and Strength of Mind,
I am so determined to Survive,
To Live my Life, to Stay Alive,
So this torture I must withstand,
With Faith I'll find a helping hand,
Deep inside myself I find a Strength,
To help me swim that extra length,
My stubbornness drives me from within,
To continue my search and Never Give In,
So I ride the storm. The skies WILL clear,
I KNOW that sunshine will appear,
And my sinking feet in the Quick-Sand,
Will find themselves on Solid Ground,
and Gingerly I'll get back on my feet,
For I will Never Accept defeat!
© Sylvia Brown, April 2000
Whack after whack, oh where can I flee?
My body feels weak, my movements so slow,
I duck and I dive to avoid the next blow,
It beats me up. I'm black and blue,
Nine rounds with Mike Tyson,
how many more can I do?
My body is numb, I start to shake,
Please Rescue me, I need a break!
But no one hears my desperate plea,
So I have to search inside of me,
I reach inside, what can I find?
A Will to Live and Strength of Mind,
I am so determined to Survive,
To Live my Life, to Stay Alive,
So this torture I must withstand,
With Faith I'll find a helping hand,
Deep inside myself I find a Strength,
To help me swim that extra length,
My stubbornness drives me from within,
To continue my search and Never Give In,
So I ride the storm. The skies WILL clear,
I KNOW that sunshine will appear,
And my sinking feet in the Quick-Sand,
Will find themselves on Solid Ground,
and Gingerly I'll get back on my feet,
For I will Never Accept defeat!
© Sylvia Brown, April 2000
Thursday, March 3, 2011
poem from Karma
(THE BEAST)
You can cry all the tears in your eyes
until all tears are wept.
You can rest all the hours of the day
until all sleep is slept.
You can talk all the words that you know
until all words are told.
You can fight tooth and nail with your will,
hold your head up so bold.
You can take all the drugs on the shelf,
jab your skin till it's raw.
You can spend all the cash in your bank
on a miracle cure.
You can bury your head in some game,
hide a while - for a day.
You can lift up your head to the sky,
find some hope, you can pray.
You can learn all the facts you can find -
all the books you can buy.
You can drink all the booze in the bar,
drain the bottles all dry.
Still the beast feeds itself on your brain
and it won't go away.
And it is you, my friend, understand
that the beast's here to stay.
It's not over for you, not this time,
and you've still much to give.
And there's still so much love in your heart
and so much life to live.
And the beast won't define you at all,
you must be who you are.
In your soul there's a spirit of love
so just make it go far.
You can cry all the tears in your eyes
until all tears are wept.
You can rest all the hours of the day
until all sleep is slept.
You can talk all the words that you know
until all words are told.
You can fight tooth and nail with your will,
hold your head up so bold.
You can take all the drugs on the shelf,
jab your skin till it's raw.
You can spend all the cash in your bank
on a miracle cure.
You can bury your head in some game,
hide a while - for a day.
You can lift up your head to the sky,
find some hope, you can pray.
You can learn all the facts you can find -
all the books you can buy.
You can drink all the booze in the bar,
drain the bottles all dry.
Still the beast feeds itself on your brain
and it won't go away.
And it is you, my friend, understand
that the beast's here to stay.
It's not over for you, not this time,
and you've still much to give.
And there's still so much love in your heart
and so much life to live.
And the beast won't define you at all,
you must be who you are.
In your soul there's a spirit of love
so just make it go far.
Thursday, February 24, 2011
quotes from Karma
*U CAN'T TELL ME WHAT MY (GOD) CAN'T DO DOCTORS MIGHT SAY MEDS WILL GET ME UP AND GOING BUT I SAY (GOD) IS MY DOCTOR FEELING GOOD TODAY BACK DRIVING DOING 4 MYSELF HE HAS BROUGHT ME FROM A MIGHTY LONG WAY WHAT A AWESOME (GOD)*
*I MIGHT HAVE (MS) BUT IT DOES NOT MAKE ME (MS) NUTHIN BUT A DEMON THAT'S Y I STAY PRAYED UP AND READ DEMONS FEED ON SICKNESS GET ALL IN UR HEAD MAKE U FEEL SORRY DEPRESSED I HAVE 2 LAY HANDS ON MY (MS) EVERYDAY THAT'S Y WE MUST FIGHT EVERYDAY IT'S TRULY A BATTLE WITH THE ENEMY IS TRYING IT'S BEST 2 TAKE US BUT IT'S A LIE WITH (GOD) ON MY SIDE NO DEMON IN HELL WILL GET ME DOWN STAY STRONG BE BLESSED*
*CLAIM IT,SPEAK IT,RECEIVE IT I AM HEALED NO NEED 2 BE DOWN CAUSE OF (MS) A.K.A. SATAN U HAVE 2 LET HIM 2 KNOW WHO'S THE BOSS AROUND HERE CAUSE IF U THROWING A PITY PARTY U LETTING OL SATAN WIN NOT WITH ME CAUSE HE KNOW I DON'T PLAY HE KNOW I WILL JACK HIM UP*
*NOTICE ME NOT MY DISEASE*
*TO DO LIST:*
- LAUNDRY
- CLEAN HOUSE
- COOK DINNER
- BEAT (MS)
*I MIGHT HAVE (MS) BUT IT DOES NOT MAKE ME (MS) NUTHIN BUT A DEMON THAT'S Y I STAY PRAYED UP AND READ DEMONS FEED ON SICKNESS GET ALL IN UR HEAD MAKE U FEEL SORRY DEPRESSED I HAVE 2 LAY HANDS ON MY (MS) EVERYDAY THAT'S Y WE MUST FIGHT EVERYDAY IT'S TRULY A BATTLE WITH THE ENEMY IS TRYING IT'S BEST 2 TAKE US BUT IT'S A LIE WITH (GOD) ON MY SIDE NO DEMON IN HELL WILL GET ME DOWN STAY STRONG BE BLESSED*
*CLAIM IT,SPEAK IT,RECEIVE IT I AM HEALED NO NEED 2 BE DOWN CAUSE OF (MS) A.K.A. SATAN U HAVE 2 LET HIM 2 KNOW WHO'S THE BOSS AROUND HERE CAUSE IF U THROWING A PITY PARTY U LETTING OL SATAN WIN NOT WITH ME CAUSE HE KNOW I DON'T PLAY HE KNOW I WILL JACK HIM UP*
*NOTICE ME NOT MY DISEASE*
*TO DO LIST:*
- LAUNDRY
- CLEAN HOUSE
- COOK DINNER
- BEAT (MS)
Tuesday, February 15, 2011
One of Life's Miracles
A smile is one of life's miracles. It brings hope to a really bad day.
It brings to a heart that is empty and bare a reason to trust, come what may.
A smile can lift the sadness that falls heavy inside a soul.
A smile can brighten a little child's heart when his home is lonely and cold.
A smile can say "I love you." A smile can whisper, "I care."
A smile can shout, "Cheer up, my friends; your burden, I will always share!"
Be generous with your smiles today; give a smile to your loved ones dear.
Share a smile with each person you meet; work a miracle, spread some cheer.
(from Mature Living by Shirley Scruggs)
.I thought it was a great poem for all of us dealing with MS.
It brings to a heart that is empty and bare a reason to trust, come what may.
A smile can lift the sadness that falls heavy inside a soul.
A smile can brighten a little child's heart when his home is lonely and cold.
A smile can say "I love you." A smile can whisper, "I care."
A smile can shout, "Cheer up, my friends; your burden, I will always share!"
Be generous with your smiles today; give a smile to your loved ones dear.
Share a smile with each person you meet; work a miracle, spread some cheer.
(from Mature Living by Shirley Scruggs)
.I thought it was a great poem for all of us dealing with MS.
Thursday, February 10, 2011
HOPE
If I can put new hope within the heart
Of one who has lost hope,
If I can help a brother up
Some difficult long slope
That seems too steep for tired feet to go,
If I can help him climb
Into the light upon the hill's far crest,
I shall begrudge no time
Or strength that I spend, for well I know
How great may be his need.
If I can help through any darkened hour,
I shall be glad indeed.
For I recall how often I have been
Distressed, distraught, dismayed,
And hands have reached to help, and voices called
That kept me unafraid.
If I can share this help that I have had,
God knows I shall be glad.
- Grace Noll Crowell
(received this as a special "Happy Birthday" this morning).
Enjoy, Leola
Of one who has lost hope,
If I can help a brother up
Some difficult long slope
That seems too steep for tired feet to go,
If I can help him climb
Into the light upon the hill's far crest,
I shall begrudge no time
Or strength that I spend, for well I know
How great may be his need.
If I can help through any darkened hour,
I shall be glad indeed.
For I recall how often I have been
Distressed, distraught, dismayed,
And hands have reached to help, and voices called
That kept me unafraid.
If I can share this help that I have had,
God knows I shall be glad.
- Grace Noll Crowell
(received this as a special "Happy Birthday" this morning).
Enjoy, Leola
Tuesday, February 8, 2011
over my shoulder
As I looked over my shoulder
To all I thought I’d lost.
I cried as I grieved
For what my MS had cost.
I missed my old body
And what I used to do.
How I made plans freely,
And met my friends at noon.
When I didn’t worry how I’d feel
As I began each day.
When I didn’t continually struggle
To find the words to say.
I kept looking over that shoulder,
Crying for what I missed.
I would go through my mind
Making a mental list.
Then a funny thing happened
I realized something true.
While I was looking over my shoulder
I almost missed something new.
I had learned to count my blessings
To really budget my time.
I had learned to value what’s important
And appreciate what’s mine.
I found out who my friends were,
I knew who’d be there through my pain.
I learned to be spontaneous,
And saw what I had gained.
I made new friendships
I put my health first.
I spent more time with my children
And hugged them til they burst.
I valued the time with my friends
And I learned when to say “no”.
For my time was much more valuable
I could choose when to stay or go.
I loved with all my heart
And gave a part of me away;
But only to the ones deserving
Of the best I had to give each day.
The saddest part of this story
Is what I stood to lose.
I forgot what I had in front of me
That I had the right to choose.
While I was looking over my shoulder
To all I thought I’d lost.
I almost missed what I still had
And what my regret would cost.
I stopped looking over my shoulder
I appreciate what’s new.
I have a new life now
And MS is included too.
But now I live each day
Finding my smile in my heart
I laugh, I love, I live my life
Cuz MS is just one part.
~Tammy Malkowski (1/21/2011
To all I thought I’d lost.
I cried as I grieved
For what my MS had cost.
I missed my old body
And what I used to do.
How I made plans freely,
And met my friends at noon.
When I didn’t worry how I’d feel
As I began each day.
When I didn’t continually struggle
To find the words to say.
I kept looking over that shoulder,
Crying for what I missed.
I would go through my mind
Making a mental list.
Then a funny thing happened
I realized something true.
While I was looking over my shoulder
I almost missed something new.
I had learned to count my blessings
To really budget my time.
I had learned to value what’s important
And appreciate what’s mine.
I found out who my friends were,
I knew who’d be there through my pain.
I learned to be spontaneous,
And saw what I had gained.
I made new friendships
I put my health first.
I spent more time with my children
And hugged them til they burst.
I valued the time with my friends
And I learned when to say “no”.
For my time was much more valuable
I could choose when to stay or go.
I loved with all my heart
And gave a part of me away;
But only to the ones deserving
Of the best I had to give each day.
The saddest part of this story
Is what I stood to lose.
I forgot what I had in front of me
That I had the right to choose.
While I was looking over my shoulder
To all I thought I’d lost.
I almost missed what I still had
And what my regret would cost.
I stopped looking over my shoulder
I appreciate what’s new.
I have a new life now
And MS is included too.
But now I live each day
Finding my smile in my heart
I laugh, I love, I live my life
Cuz MS is just one part.
~Tammy Malkowski (1/21/2011
Tuesday, February 1, 2011
I'm still me
MS hides, inside of me,
Invisible to the naked eye.
I can feel the MonSter
Trying to make me cry.
...
It’s a part of me, it’s true.
That, I cannot forget.
It rears it’s ugly head
And some days are filled with regret.
There are some bad days
You’ll hear me complain.
But if it consumes me,
Then what will I gain?
I am still “Me”,
The person you’ve known.
Even though inside
The disease has grown.
I won’t allow it
To take over me.
To steal my laughter,
My smile or faith in “HE”.
I choose to laugh
About my life.
To handle it with grace
Dignity and less strife.
So laugh with me, smile with me
But please remember this:
There is rarely a moment
That MS does not exist.
But through it all, the highs & lows,
I have my family & friends.
Remember I’m still “Me”.
I will not let MS be my end!
By Tammy Malkowski 1/30/2010
Invisible to the naked eye.
I can feel the MonSter
Trying to make me cry.
...
It’s a part of me, it’s true.
That, I cannot forget.
It rears it’s ugly head
And some days are filled with regret.
There are some bad days
You’ll hear me complain.
But if it consumes me,
Then what will I gain?
I am still “Me”,
The person you’ve known.
Even though inside
The disease has grown.
I won’t allow it
To take over me.
To steal my laughter,
My smile or faith in “HE”.
I choose to laugh
About my life.
To handle it with grace
Dignity and less strife.
So laugh with me, smile with me
But please remember this:
There is rarely a moment
That MS does not exist.
But through it all, the highs & lows,
I have my family & friends.
Remember I’m still “Me”.
I will not let MS be my end!
By Tammy Malkowski 1/30/2010
Bee therapy
found here It is estimated that between 5,000 to 10,000 people with MS in the United States use bee sting therapy, so some people must find that it helps them and isn’t unbearable. Read on for more details.
What Is It?
Bee sting therapy is one type of “apitherapy,” a term which refers to the use of bee products to treat medical conditions. Other forms of apitherapy include the use of bee pollen, propolis (a waxy substance produced by bees), raw honey and royal jelly. Bee sting therapy, also referred to as “bee venom therapy,” is pretty much just what it sounds like -- getting stung with bees in a controlled setting.
What Is It For?
It is used by people with many different autoimmune disorders, including MS, rheumatoid arthritis, lupus and scleroderma. It is also used for a number of other diseases and conditions, including depression, skin conditions, menstrual cramps and varicose veins.
How Is It Supposed to Work?
It is claimed that bee sting therapy works with the patient's own body to reduce inflammation. The theory is that because the stings produce inflammation, the body mounts an anti-inflammatory response. Presumably, this would then work to reduce inflammation where the myelin is being attacked by the immune system in a person with MS.
What Happens During a Treatment?
Bee sting practicioners include nurses, acupuncturists, naturopaths and interested laypersons, including beekeepers. Some patients eventually just order some bees and perform the sessions themselves. Bee sting therapy is also given by physicians, who use venom in an injectible form and inject it under the skin, rather than live bees.
Before the treatment begins, the therapist may inject the patient with a weak form of the venom to test for an allergic reaction. A bee (usually a honeybee) is held with tweezers up to a part of the body. The stingers are left in for up to 15 minutes, then removed with tweezers. Between 20 to 40 stings are done each session, and a patient typically gets three sessions a week.
What Does It Feel Like?
Monday, January 31, 2011
quotes from Karma
*I CAN'T HELP MY BEAUTY OR MULTIPLE SCLEROSIS*
*HEY, KEEP STARING AT ME AND U MIGHT CURE MY MULTIPLE SCLEROSIS.THEN WE WORK ON UR SOCIAL SKILLS*
*WARNING:TAKE BACK FIVE STEPS BACK AWAY FROM THIS WOMAN OR MAN I HAVE MULTIPLE SCLEROSIS I HAVE CONSTANT NEED 2 STUMBLE AND TWITCH AND HAVE SLURRED SPEECH WITHOUT WARNING...UNTIL NOW*
*I GIVE THANKS 2 (GOD) EVERYDAY WAKING ME UP 2 SEE ANOTHER DAY AND I HAVE THE ACTIVITIES OF MY LIMBS EXCEPT MY LEFT HAND BUT IN DUE TIME I WILL SOME OF US COMPLAIN ABOUT THE SMALLEST THINGS BUT IT'S ALWAYS SOMEONE OUT THERE THAT IS WORST THAN URS BE GRATEFUL 4 WHAT WE HAVE JUST HAVE SAY THANK U (LORD) CAUSE U COULD BE ...BEDRIDDEN OR IN A WHEELCHAIR PERMANENTLY I KNOW (GOD) GOT ME*
*EVERYONE IS NOT MEANT 2 HANDLE A CHALLENGE BUT WHEN U HAVE (MS) WE CAN AND WE WILL*
*I DON'T KNOW ABOUT Y'ALL ME AND (MS) GOING 2 TAKE A RIDE 2 THE SHOOTING RANGE I'M GOING 2 PUT 3 BULLETS IN HIS HEAD LIKE A BOWLING BALL I'M NOT PLAYING WITH HIM *
A beautiful soul who inspires us all!
*HEY, KEEP STARING AT ME AND U MIGHT CURE MY MULTIPLE SCLEROSIS.THEN WE WORK ON UR SOCIAL SKILLS*
*WARNING:TAKE BACK FIVE STEPS BACK AWAY FROM THIS WOMAN OR MAN I HAVE MULTIPLE SCLEROSIS I HAVE CONSTANT NEED 2 STUMBLE AND TWITCH AND HAVE SLURRED SPEECH WITHOUT WARNING...UNTIL NOW*
*I GIVE THANKS 2 (GOD) EVERYDAY WAKING ME UP 2 SEE ANOTHER DAY AND I HAVE THE ACTIVITIES OF MY LIMBS EXCEPT MY LEFT HAND BUT IN DUE TIME I WILL SOME OF US COMPLAIN ABOUT THE SMALLEST THINGS BUT IT'S ALWAYS SOMEONE OUT THERE THAT IS WORST THAN URS BE GRATEFUL 4 WHAT WE HAVE JUST HAVE SAY THANK U (LORD) CAUSE U COULD BE ...BEDRIDDEN OR IN A WHEELCHAIR PERMANENTLY I KNOW (GOD) GOT ME*
*EVERYONE IS NOT MEANT 2 HANDLE A CHALLENGE BUT WHEN U HAVE (MS) WE CAN AND WE WILL*
*I DON'T KNOW ABOUT Y'ALL ME AND (MS) GOING 2 TAKE A RIDE 2 THE SHOOTING RANGE I'M GOING 2 PUT 3 BULLETS IN HIS HEAD LIKE A BOWLING BALL I'M NOT PLAYING WITH HIM *
A beautiful soul who inspires us all!
Friday, January 28, 2011
my story
I guess this is my story about my journey with m.s. So...
The summer of '07 I spent a week at a lake with my family! I rested through alot of it, but I basically baked. When we came home my hand was numb in three fingers. Weird, okay, so I told my doctor about it and we thought nerve entrapment. So a routine mri was scheduled.
I Took my Valium and tried to zen and yoga breathe through my first mri. Later that day, I was called back for another MRI NOW. They would not say why, but I went in at midnight. By then I had read my referral and was freaking out!
I got to a neurologist very quickly and well he said m.s. almost immediately. I have a large lesion at C2 that was suspect. So, I did another MRI in three months, repeat x 2. This continued until I went through what was personal hell of a lumbar puncture.
Again, he said he felt it was M.S., but most of my other tests were negative and I didn't really have any spots on the brain.
So, I started copaxone on a more than likely diagnosis. Long story short, I moved to Idaho and got a new neurologist. More MRI's and she questioned the M.S. diagnosis. So I stopped the copaxone and waited for an answer again.
I ended up at a M.S. specialist in Seattle. Another Mri and this time spots showed on my brain. As for my monster lesion at C2, she felt I have a brain, body disconnect and may change as I age. ( I personally say screw that, there will be the right medication or a cure first )
So I went home to grieve and then start what I consider the worst 4 months of my life, taking rebif. OMG It was pure hell. I have been offered tysabri which I declined, but I await the gilenya data after its been out a for a little bit longer.
I take a bucket of medication and right now I am doing well. I walk into walls and forget my words, loose concentration, coordination, and sometimes wake up in excruciating pain, but I am okay!
Overall, I am in love and happy to be alive. I am a woman who has m.s., m.s. does not have me!
The summer of '07 I spent a week at a lake with my family! I rested through alot of it, but I basically baked. When we came home my hand was numb in three fingers. Weird, okay, so I told my doctor about it and we thought nerve entrapment. So a routine mri was scheduled.
I Took my Valium and tried to zen and yoga breathe through my first mri. Later that day, I was called back for another MRI NOW. They would not say why, but I went in at midnight. By then I had read my referral and was freaking out!
I got to a neurologist very quickly and well he said m.s. almost immediately. I have a large lesion at C2 that was suspect. So, I did another MRI in three months, repeat x 2. This continued until I went through what was personal hell of a lumbar puncture.
Again, he said he felt it was M.S., but most of my other tests were negative and I didn't really have any spots on the brain.
So, I started copaxone on a more than likely diagnosis. Long story short, I moved to Idaho and got a new neurologist. More MRI's and she questioned the M.S. diagnosis. So I stopped the copaxone and waited for an answer again.
I ended up at a M.S. specialist in Seattle. Another Mri and this time spots showed on my brain. As for my monster lesion at C2, she felt I have a brain, body disconnect and may change as I age. ( I personally say screw that, there will be the right medication or a cure first )
So I went home to grieve and then start what I consider the worst 4 months of my life, taking rebif. OMG It was pure hell. I have been offered tysabri which I declined, but I await the gilenya data after its been out a for a little bit longer.
I take a bucket of medication and right now I am doing well. I walk into walls and forget my words, loose concentration, coordination, and sometimes wake up in excruciating pain, but I am okay!
Overall, I am in love and happy to be alive. I am a woman who has m.s., m.s. does not have me!
Thursday, January 27, 2011
poem by Tammy
If you don’t understand MS,
Could you just trust me?
If you don’t “get it”,
Can you just love me?
...
If you can’t see what I’m going through,
Can you just believe me?
If you can’t understand my pain,
Can you just comfort me?
If you can’t find a way to fix it,
Can you find an ear to lend?
If you don’t know why this happened,
Can you help my spirit mend?
I love you for trying,
Don’t ever forget.
The effort you’ve put forth,
Please don’t regret.
I have this disease
And I have confusion.
Just don’t ever think
MS is some illusion.
Can you love me anyway?
Can you be my friend?
You may never understand it,
But MS is a part of me in the end.
~By Tammy Malkowski, 7/26/10
Could you just trust me?
If you don’t “get it”,
Can you just love me?
...
If you can’t see what I’m going through,
Can you just believe me?
If you can’t understand my pain,
Can you just comfort me?
If you can’t find a way to fix it,
Can you find an ear to lend?
If you don’t know why this happened,
Can you help my spirit mend?
I love you for trying,
Don’t ever forget.
The effort you’ve put forth,
Please don’t regret.
I have this disease
And I have confusion.
Just don’t ever think
MS is some illusion.
Can you love me anyway?
Can you be my friend?
You may never understand it,
But MS is a part of me in the end.
~By Tammy Malkowski, 7/26/10
the funny
Maribel Rosa These were actual hospital patient reports...enjoy!
1. The patient refused autopsy.
2. The patient has no previous history of suicides.
...
3. Patient has left white blood cells at another hospital.
4. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.
5. Patient has chest pain if she lies on her left side for over a year.
6. On the second day the knee was better, and on the third day it disappeared.
7. The patient is tearful and crying constantly. She also appears to be depressed.
8. The patient has been depressed since she began seeing me in 1993.
9. Discharge status: Alive but without permission.
10. Healthy appearing decrepit 69-year old male, mentally alert but forgetful.
11. Patient had waffles for breakfast and anorexia for lunch.
12. She is numb from her toes down
1. The patient refused autopsy.
2. The patient has no previous history of suicides.
...
3. Patient has left white blood cells at another hospital.
4. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.
5. Patient has chest pain if she lies on her left side for over a year.
6. On the second day the knee was better, and on the third day it disappeared.
7. The patient is tearful and crying constantly. She also appears to be depressed.
8. The patient has been depressed since she began seeing me in 1993.
9. Discharge status: Alive but without permission.
10. Healthy appearing decrepit 69-year old male, mentally alert but forgetful.
11. Patient had waffles for breakfast and anorexia for lunch.
12. She is numb from her toes down
poem by karma jones
*TRY 2 BE US BY:(KARMA JONES)
COVER UR EYES AND EARS VISION OUR DARKNESS
COULD U HANDLE BEING BOUND 2 A WHEELCHAIR OR WALKING ON A CANE EVERYDAY
...
DO U THINK HAVING (MS) IS EASY ?
TRY 2 BE US AND SURVIVE REAL LIFE.
IT'S HARDER THAN U THINK
SPEND SOME WEEKS OR MONTHS IN A IN A HOSPITAL OR PHYSICAL THERAPY REHAB
REMEMBER NOT 2 USE UR LEGS
TRY STANDING ON UT OWN WITHOUT FALLING
TRY 2 READ OR DRIVE BUT CAN'T
TRY 2 WRITE UR NAME BUT U CAN'T U HAVE NO FEELING IN UR HANDS OR DRAW A
STRAIGHT LINE
WE LEAN 2 ADAPT EVERYDAY
WE NEVER ASKED 4 (MULTIPLE SCLEROSIS)
EVERYTHING HAPPENS 4 A REASON
WE ASK OF U 2 TRY 2 BE US 4 AN EXTENDED LENGTH OF TIME
IF UR GOING LAUGH OR CALL US NAMES
COVER UR EYES AND EARS
PUSH URSELF AROUND IN A WHEELCHAIR BEFORE U SAY A NASTY COMMENT
TRY 2 PICTURE URSELF AS ONE OF UR 4 THE REST OF UR LIFE
COVER UR EYES AND EARS VISION OUR DARKNESS
COULD U HANDLE BEING BOUND 2 A WHEELCHAIR OR WALKING ON A CANE EVERYDAY
...
DO U THINK HAVING (MS) IS EASY ?
TRY 2 BE US AND SURVIVE REAL LIFE.
IT'S HARDER THAN U THINK
SPEND SOME WEEKS OR MONTHS IN A IN A HOSPITAL OR PHYSICAL THERAPY REHAB
REMEMBER NOT 2 USE UR LEGS
TRY STANDING ON UT OWN WITHOUT FALLING
TRY 2 READ OR DRIVE BUT CAN'T
TRY 2 WRITE UR NAME BUT U CAN'T U HAVE NO FEELING IN UR HANDS OR DRAW A
STRAIGHT LINE
WE LEAN 2 ADAPT EVERYDAY
WE NEVER ASKED 4 (MULTIPLE SCLEROSIS)
EVERYTHING HAPPENS 4 A REASON
WE ASK OF U 2 TRY 2 BE US 4 AN EXTENDED LENGTH OF TIME
IF UR GOING LAUGH OR CALL US NAMES
COVER UR EYES AND EARS
PUSH URSELF AROUND IN A WHEELCHAIR BEFORE U SAY A NASTY COMMENT
TRY 2 PICTURE URSELF AS ONE OF UR 4 THE REST OF UR LIFE
Tuesday, January 25, 2011
My M.S. Story
I will begin with some basic information about myself. I am currently 58 years old, soon to turn 59. I am a wife, mother, grandmother, Retired Nurse. I have three grown children and 6 grandchildren. I have a step granddaughter who has a little boy, so I guess that makes me a Great Grandmother (ah, way too young to be called that). Anyway, it is what it is.
I was born in Arkansas but grew up in California. Got married at 19 and soon after began to raise a family. Life was good. I was a Registered Nurse, made good income, had three wonderful children and a great husband. As time went on, I began to have lots of back problems; from all the travel I did as a Nurse Consultant and years of lifting and caring for patients. So, I ended up with 5 back surgeries which ended my nursing career.
We decided to move to Georgia where our daughter and her family lived. Wouldn’t it be grand to see our grandchildren growing up and be involved in their lives? The rest of our children, parents, sisters and brothers all were in or around California. This was a great, giant step for us. Moving across the country. A culture shock for sure. We moved to Georgia in 2006 and after a year of crying every day, we began to make it “home”. Now, I can say that we do love living here, the people with their Southern charm, the year round gardening and lifestyle. So many great reasons to enjoy being here. In the beginning, all I saw was a “foreign” country. Seems like people did not even use the same language here in the deep south. I had to learn English all over again. What does it mean; “I am fixin’ to do something?” Or, “I am carrying Jim to the store?” I had no idea. I had not even heard the word “ain’t” but began to hear it on a daily basis. Needless to say, it seemed like a far, far, far away place from my California upbringing.
Back up a piece. We love to camp. We spent lots of weekends, and weeks, after I was disabled camping in the luxury of our Camp trailer. One summer day in or around the year 2000, we were camping and I had laid down for a nap in the trailer. I remember waking up and trying to sit up. I immediately fell back down on the bed. I tried again. But, again, I fell back onto the bed. I laid there a moment, not quite sure why the place seemed to be swarming in circles around me. I could not tell up from down. So, I just lay there.
A few moments later my husband came in and he helped me outside in the fresh air. I remember walking, or rather, him carrying me outside. I had never been drunk, as I do not drink, but felt that I looked rather silly; staggering, as he tried to keep me upright out to my chair. Our friends who were camping with us thought this a strange sight, for sure. I sat there around the campfire ring and slowly my head began to clear. I had been feeling a little nauseous at the time and just could not figure out what was going on.
When we arrived home from camping, I decided that I needed to see my doctor. I made an appointment and was told I had “vertigo”. OK. No problem. I was given a prescription of Meclizine (Antivert) and went on my way, feeling that this was the end. Fast forward, years later to the hot summer of Georgia. My husband and I were mowing the lawn (Georgians would say, “we were cutting the grass”) for some friends. I again had the same experience as years earlier where the world around me was spinning and I had to fall to the ground and stay there. This began to happen once or twice a month and then weekly. I also began to see double. I would see an image on top of another image. If I shut one eye, it would clear. But the nausea became a problem. About the same time I began to have trouble with my right leg; numbness, tingling and pain. I just pushed it aside feeling that it was a result of all the back injuries and surgeries I had in the past. I would begin to trip over my leg just catching myself before I would fall. Never actually hitting the ground.
I really just felt that I would just live with it and not get it checked out since I had been told it was vertigo and had medicine that I could take to relieve this symptom. But, in the meantime, I had begun a ministry of visiting shut ins, the chronically ill; folks in our neighborhood that needed a visit. One of the times I was visiting a woman who was recovering from a stroke. As she asked about me, she was concerned, because the symptoms I had, were the same as she had, prior to her stroke. I got the message and began the search for a real diagnosis of what was going on with me.
I was first sent to a Neurologist who took his time in asking questions and began the tests that would confirm or deny an accurate diagnosis. I had my first MRI of the brain and the findings were indicative of a small vessel disease or demyelinating disease. Nothing firm. We waited a few months and repeated the MRI with the same findings. Lots of white matter. Many lab tests were done to rule out other diseases that mimicked one another. I had an elevated sedimentation rate of 22 (showing an immune response to an inflammatory process outside the Central Nervous System) – ANA of 299, which is extremely high, so was diagnosed with Lupus – myelin protein 1.4 which was elevated – anti scleroderma 278 with a normal below 99 , so was also told I had Scleroderma.
More tests followed; MUSK, negative; Sjogrens, negative. I was referred to a Rheumatologist, a Neuro Opthomologist, and it seems the list became endless. The eye doctor said my Optic Nerve was good, which was a good thing. She also, jokingly said, that since I was diagnosed at such an advanced age, 57, that I would probably not get any of the bad symptoms of Multiple Sclerosis. I think that was a good thing!!!
The Rheumatologist visit, was OH SO EMBARRASING. I mean really, a doctor, in todays world that does not have hospital gowns. Expects you to undress and then just sit on the table and wait for him, then answer a thousand and one questions. NEVER again. I told his nurse so and told him also. I was then sent to XRay where I insisted on a gown. Was given the XRay and then sent back to his waiting room. I visited him every 3 months with no real outcome. Finally, last Christmas, I was visiting him and could not see any point in going there. He said I had Scleroderma. He said I had Lupus. His job was to check on how I was doing with these two diagnoses. My neurologist felt that I did not have any signs of either one. When I began complaining about the real things that were going on with me, he said “What do you think I am here to do for you?” I replied, “I haven’t a clue”. I could tell he was mad at me and also fed up. His nurse came in and I was crying. She said, “You’re not coming back are you?” I said, “NEVER!!!” She was the only sympathetic person in that place. I do miss seeing her. But I fired that doctor due to irreconcilable differences.
Well, my neurologist wasn’t too happy about that, but I have survived just fine since then. I have since seen another neuro in Reno, Nevada, who ordered another series of tests; Evoked Potential Test, Nerve Conduction Test, and a 3T MRI. All of the above, plus, my second Lumbar Puncture. The interesting thing about the spinal tap; my doctor called me to inform me that the lab had not handled the specimen correctly and therefore the important test he needed to confirm this diagnosis, was not done. He hated to tell me, but that, I needed to repeat the spinal tap. He was so apologetic. He was very unhappy with the lab.
I proceeded to have my third spinal tap which came back with OG bands. Finally, the diagnosis was clear; Multiple Sclerosis. Think of the relief, the fear, the future, and it all passed thru my mind in one instant. Would I end up in a wheel chair having to rely on someone else to care for me? Would I need a catheter because I would not be able to manage getting to the bathroom? All the things I knew about this disease came storming down on top of my brain. I had finally been given a reason as to why my body was misbehaving. It wasn’t exactly a death sentence. I could go on! Couldn’t I? I was then given a treatment plan which included a once weekly injection. ICK. I thought. I am a nurse. Shots are no big thing. But, to have to give myself one? NO WAY. I just could not do it.
My church has a lot of nurses that belong. So, I found one who was willing to give me my first injection and to teach my husband to give it to me weekly. Of course, I was not instructed in the need to premedicate or increase fluids, or really any knowledge ahead of time. Yes, I was given a book. Yes, I was given a DVD. But, when you are given such a diagnosis, you cannot retain much information on the topic. I was one of those who read everything given to me, researched the internet, looked in my medical literature, but, when it came down to the actual time of getting the injection, all that knowledge went out the window. I must say that my husband gave me the injections from February to June. I then went on a trip to visit my daughter and had a friend give me two of the injections. She was not available for my final shot before I flew back home. SO, I DID IT. HAD NO CHOICE. JUST WENT AHEAD AND DID IT. I have been doing it ever since. No biggy.
My first injection was February 11, 2010 (one day after my 57th birthday). I had been told by my brother, whose wife has MS, to take the shot at night so I could sleep thru the effects. I had the injection at 6pm. Went to bed as normal around 9 or 10pm. What a horrible night. All night, cold, shivering, burning up, couldn‘t get warm, literally shaking the bed, not enough covers to keep me warm. I felt like I had the worst case of the flu, ever. Every muscle in my body was screaming out in pain. My jaws hurt so badly from all the shaking. The following day, I could barely move. It took all the energy I had to just get up and move to the couch, where I spent the day.
The next day, I seemed to be all better. But, I did not forget what that shot had done to me. I began researching again, on how to overcome the side effects of the medicine. My nurse friend told me to take Benadryl 50mg and Tylenol 1000mg about 1 hour before the injection and then again afterwards. I began that regiment. Only I figured out that if I take it 2 hours before and 2 hours after and again 4 hours into the night, I could go without any of the side effects. At about the 6 month period of this treatment, I was able to sleep thru the night and wake up totally without any ill effects. I could have a normal day “after”.
I have some strange aches and pains. My left arm on the inside goes numb and painful at the same time. Now, how can that be. If it is numb, you aren’t supposed to feel it??? Well, I feel it. I also have my left little finger that burns like fire most of the time. Don’t know what that is all about, but it does. Almost feels like it is broken in the joint. Oh well, it will not be the death of me, this little finger. So, I carry on. I type. I blog. I play games on the computer. I bake and cook. I love to bake. I love to write stories of Gods goodness to me and my family. It helps to focus on others and the goodness that I have received, then to dwell on what is happening to my body which is not of my choosing.
Many funny and interesting things have happened along this journey. I teach a Sunday School class of ladies who are all over 80. We call them the Fidelis Class, which means Faithful. I always taught children in the church so I continued on using Object Lessons with this new class of wonderful Seniors. One Sunday I had taken all kinds of objects into the room to teach them their lesson. I was doing just fine, until I held up a fire extinguisher. I could not think of the name for it whatsoever. I stammered along, stuttering, trying to come up with the name, when one of the deal ladies said, “it is called a fire extinguisher!” I was so relieved that the name had somehow come up. I surely could not have found it. This seemed to happen pretty regularly when I would be talking to folks. My grandchildren just laugh at me now. We will be baking and I would keep telling them that something was in the dryer, meaning the oven. I guess, I got the HOT part of it right, just the wrong appliance. I just cannot seem to find the right words at times but I always get in the general area. If it is something in the kitchen I am trying to recall, I might say freezer and mean ice. OR, possibly knife when I meant shot. Oh well, who knew this was to come after me. But, I can do it.
My mother In law, who is 83, lives with us. She is as sharp as a tack. She is constantly correcting my words and putting in the right ones. The ones I cannot think of. Between her and my husband, I do not stand a chance, of coming up with the right words. They both know exactly what I mean even if I cannot get the words out. That is one of the most frustrating symptoms I have of this disease. Not being able to recall words. Familiar words. Words I always knew and could spell and now am at a loss to bring them to remembrance.
I often will play bowling with them on our WII. Only after I bowl a couple of times, and I am good, I begin to fall into the walls or the couch or them. They just laugh and think it is funny. Cannot walk down the halls at church without having to lean on the walls to get to where I am heading. All of the church people have figured me out by now, but still are concerned that I am going to get hurt. No falls as of this point. No injuries. I drop things. Cannot seem to hang on to anything that I put in my hands, but have learned that it is going to happen and have adjusted how I do things now. I have learned to slow down. Take my time. Not be in a rush. I do not plan things in the morning or evening hours if I do not have to. Afternoons are my best time. I schedule myself rest times. I am learning to take care of me.
It has now been almost 1 year since I have begun treatment. I have only had one relapse which was corrected with a 6 day course of Prednisone. Do I have pain? Yes. Do I have daily symptoms? Yes. Can I do anything about that? Yes. I believe that as I educate myself, reduce the amount of stress in my life, keep myself hydrated (I later learned to drink lots of fluids the day of and the day after my treatment) exercise and eat right, that I will have a better day. This is a day to day disease. Sometimes it is moment to moment. Right now, I am having a good week. But, I do not know about tomorrow. I have learned to live today because tomorrow I might not be able to move, and make decisions, and go places. I am learning to love in greater depths. To do things I would never have thought I would want to try. To spend more time with my family and my loved ones.
Multiple Sclerosis has no cure. It is sometimes an “unseen” disease as we often look “normal”. It does its work underneath, in hiding, behind the brain matter. It is sneaky and sly. Comes and goes where it wishes. Robs you of motion, and the freedom to live without pain, and yes, robs you of life itself. Many have lost their battle with this disease. Many more have become crippled, wheel chair bound or even bed bound. Some cannot feed themselves, or dress themselves or even go to the bathroom on their own. They are the heroes in this story. They have suffered the most and yet, the ones I hear about, have fabulous stories to share. They have not given in. They have not given up. There is still hope. They are still praying, seeking a cure.
What can you do? How can you help? First of all by listening. Not having a ready answer. Not giving a tongue in cheek response. But really listening. Listen to what is said and what is not said. Offer to do small acts of servanthood. Bring a meal. Stop by and mop a floor. Offer to sit with the afflicted one so that a caregiver can have a much deserved break. Send an encouraging card or scripture. Offer up a prayer. Call them on the phone or drop by for a “cup of tea”. There are so many small things that are huge to those who are in the midst of the storm. Take yourself out to the waters with them for a time, and allow them to begin to heal.
Submitted by words2bless (Leola Stotts)
Monday, January 24, 2011
Poem by Karma
Just The Way I Am
Doing time for no known crime
Has been difficult for me
It's hard to live with chronic pain
That others cannot see
The thief that robbed my body
Stole my strength and left me pain
I do my very best to cope
I struggle to stay sane
I miss our get-togethers
I miss shopping at the mall
It hurts me to be left behind
It's not my choice at all
I long for how it used to be
When I could join right in
To do the fun and simple things
With family and friends
You seldom call or visit
You're tired of it, I guess
Of always asking, "Come along"
And never hearing, "Yes"
I ache to be with all of you
I wish I could explain
How doing 'normal' things in life
Can cause me so much pain
I'm trapped inside this body
With pain that has no end
I grieve for all the things I've lost
I'd like them back again
When I decline to join you
Please try to understand
It's not that I don't want to
It's just the way I am
Doing time for no known crime
Has been difficult for me
It's hard to live with chronic pain
That others cannot see
The thief that robbed my body
Stole my strength and left me pain
I do my very best to cope
I struggle to stay sane
I miss our get-togethers
I miss shopping at the mall
It hurts me to be left behind
It's not my choice at all
I long for how it used to be
When I could join right in
To do the fun and simple things
With family and friends
You seldom call or visit
You're tired of it, I guess
Of always asking, "Come along"
And never hearing, "Yes"
I ache to be with all of you
I wish I could explain
How doing 'normal' things in life
Can cause me so much pain
I'm trapped inside this body
With pain that has no end
I grieve for all the things I've lost
I'd like them back again
When I decline to join you
Please try to understand
It's not that I don't want to
It's just the way I am
Sunday, January 23, 2011
quotes from Karma Jones
*HELLO,U HAVE REACHED A NERVE ENDING THAT HAS BEEN TEMPORARILY DISCONNECTED OR IS NO LONGER IN SERVICE, IF YOU FEEL YOU HAVE REACHED THIS NERVE IN ERROR PLEASE TRY YOUR CENTRAL NERVOUS SYSTEM AGAIN THIS IS MULTIPLE SCLEROSIS*
Friday, January 21, 2011
Tammy's poem
Wednesday, January 12, 2011
A Mom with MS ( A Poem)
A Mom with MS (A Poem)
A Mom with MS,
This is me, that is true.
But I will prove I am more.
In all that I do.
I refuse to be negative,
to dwell on the past.
The journey of MS
is one that will last
I am more than MS,
I am more than a label.
I can get my kids to school
And get dinner on the table.
The kids may see me nap,
More than their friend’s moms do.
But they will know my strength
And the effort I put forth in all I do.
I want them to be proud & learn from me;
That even when you face a challenge
Your life can be yours.
We are all still free.
It’s how you handle the storm
That makes you who you are.
By weathering the storm of MS,
My attitude will take me far.
I stand here stronger than MS
I won’t let you break me.
Because I am who I am
The best of me is all you’ll see!
~Tammy Caramagno Malkowski
A Mom with MS ( A Poem)
A Mom with MS (A Poem)
A Mom with MS,
This is me, that is true.
But I will prove I am more.
In all that I do.
I refuse to be negative,
to dwell on the past.
The journey of MS
is one that will last
I am more than MS,
I am more than a label.
I can get my kids to school
And get dinner on the table.
The kids may see me nap,
More than their friend’s moms do.
But they will know my strength
And the effort I put forth in all I do.
I want them to be proud & learn from me;
That even when you face a challenge
Your life can be yours.
We are all still free.
It’s how you handle the storm
That makes you who you are.
By weathering the storm of MS,
My attitude will take me far.
I stand here stronger than MS
I won’t let you break me.
Because I am who I am
The best of me is all you’ll see!
~Tammy Caramagno Malkowski
Discovering unity
From my personal blog dated Dec 2,
I will not quote statistics to you, but there are a lot of people suffering from M.S., guesstimate 400,000. in the USA alone. I have befriended quite a few on face book and one thing I am noticing is that there is a special kin ship.
I can guarantee not one of us wants the dreaded disease, but the sufferers tend to rally around one another. I suppose I should be ashamed, but as an O.T. practitioner I hated working with M.S. patients. In the acute settings they were happy folk, but I always seemed to think that "they were gonna beat this thing!, Why are they so positive?" This was over 15 years ago and the options then were nil' to nothing.
I know find myself saying things like, " I"m not going down without a fight!" Or even better... " I have this disease, but it does not have me!" This is not uncommon in chronic illness, but it seems especially so with this particular disease. I can only hypothesise that its because of the unpredictable nature of this disease. What else can we do? Sit around and mope or try to make the best of what we have.
I know personally, I am physically an enigma. The size and location of my lesions generally result in some major gross motor problems. The neurologist looks at my mri's, meet me then repeats the process. My balance sometimes really sucks and I have assorted issues that pester, but for a monster C2 lesion.... I am a walking miracle. I have decided I am just not going down like that! Mind over body is my tune and I am not changing it!
I am watching the boards of the people taking the brand new oral med (all others are shots or infusions) and waiting now 4 more months while my doctor awaits the data. The downside to the drug would be that it is an immunosuppressant, up side little to no side effects. It also is showing up to be 3-4 more times effective than the present older medications. Will I rock the Michael Jackson Mask.... hells yeah! Will I stock up on Clorox sanitizing wipes, absolutely! Will I bathe in pure-ll, if I need to!
I normally don't fuss too much about my dis-ease, but I am finding a group of people who share one hell of a common bond. We all got this crap disease that we did nothing to catch and it affects our lives, like it or not!
I can say with all the new developments such as a surgery to detox the brain, the brain stem project I am dying to get into and now a new med.... things are looking up. I have been told to be diagnosed now may well be the best time if you have to be.
You will not find a more supportive group of people, so I just want to give props to my fellow M.S.ers and a thank you to my kind and sweet blog peeps! Life always seems to give you what you need and kind people must have been on my list! You guys rock!
I will not quote statistics to you, but there are a lot of people suffering from M.S., guesstimate 400,000. in the USA alone. I have befriended quite a few on face book and one thing I am noticing is that there is a special kin ship.
I can guarantee not one of us wants the dreaded disease, but the sufferers tend to rally around one another. I suppose I should be ashamed, but as an O.T. practitioner I hated working with M.S. patients. In the acute settings they were happy folk, but I always seemed to think that "they were gonna beat this thing!, Why are they so positive?" This was over 15 years ago and the options then were nil' to nothing.
I know find myself saying things like, " I"m not going down without a fight!" Or even better... " I have this disease, but it does not have me!" This is not uncommon in chronic illness, but it seems especially so with this particular disease. I can only hypothesise that its because of the unpredictable nature of this disease. What else can we do? Sit around and mope or try to make the best of what we have.
I know personally, I am physically an enigma. The size and location of my lesions generally result in some major gross motor problems. The neurologist looks at my mri's, meet me then repeats the process. My balance sometimes really sucks and I have assorted issues that pester, but for a monster C2 lesion.... I am a walking miracle. I have decided I am just not going down like that! Mind over body is my tune and I am not changing it!
I am watching the boards of the people taking the brand new oral med (all others are shots or infusions) and waiting now 4 more months while my doctor awaits the data. The downside to the drug would be that it is an immunosuppressant, up side little to no side effects. It also is showing up to be 3-4 more times effective than the present older medications. Will I rock the Michael Jackson Mask.... hells yeah! Will I stock up on Clorox sanitizing wipes, absolutely! Will I bathe in pure-ll, if I need to!
I normally don't fuss too much about my dis-ease, but I am finding a group of people who share one hell of a common bond. We all got this crap disease that we did nothing to catch and it affects our lives, like it or not!
I can say with all the new developments such as a surgery to detox the brain, the brain stem project I am dying to get into and now a new med.... things are looking up. I have been told to be diagnosed now may well be the best time if you have to be.
You will not find a more supportive group of people, so I just want to give props to my fellow M.S.ers and a thank you to my kind and sweet blog peeps! Life always seems to give you what you need and kind people must have been on my list! You guys rock!
Thursday, January 20, 2011
Angela's Song
An exceptional kind soul fighting PML!A song made for our dear friend Angela, by the MS Community of Facebook and YouTube. Angela has PML Progressive multifocal leukoencephalopathy and is fighting this horrible disease. She has her own foundation to raise money and awarness for MS. She also has been a huge advocate for CCSVI and has helped so many, it only seems right that we show her how much she means to all of us. Many of the clips are from her own videos, I wanted the world to see her through our eyes!
Nerve cell facts by plush microbes...
Facts: there are a lot of different kinds of nerve cells. Motor neurons shock our muscles into action. Motor neurons shock our muscles into action; sensory neurons in our eyes and ears are stimulated by light and sound, on our nose and tongue by chemicals for small and taste and on our skin by touch; and an untold number of other intereurons transmit impulses within the central nervous system and the brain. But they all work in a similar way.
When the dendrites on the dendric tree of the body of a nerve cell receive a a sufficiently strong signal, it irresistibly triggers an electrical impulse inside the cell that travels down the long thing axon ( which is protected by a fatty myelin sheath). When the impulse reaches the axon terminal at the base of the nerve, special signaling chemicals are released that float across the gap (or synapse) between one nerve cell and the next and process continues.
Most nerve cells are tiny. But some are as long as your leg, literally. They extend al the way from the base of the spine to the tips of your toes.But unlike most cells, nerve cells cannot reproduce- or if they get injured, loss of feeling and even paralysis can occur. (Abnormalities in the neurotransmitters or in the nerve cell itself can also lead to conditions such as Alzheimers disease, Parkinson's disease or MULTIPLE SCLEROSIS ).
But don't get nervous; nerve cells are shockingly reliable. And if you are feeling jittery, it's probably the neurotransmitters that are to blame anyway. So wipe off your sweaty palms, take a deep breath , close your eyes and listen to some music, smell something sweet.... and relax. Your nerves will help you do it!
Recently someone asked why m.s. affected the nerves and caused pain. This is one of the best explanations and a great toy!
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