Thursday, January 29, 2009

Online Health Networks getting Bigger!

Take a look at everydayHealth, a network dedicated to good health. Called the preeminent online health destination, everydayHealth was enhanced in October 2008 by a merger of Revolution Health and Waterfront Media.

This site focuses on maintaining good health, but there are articles and groups that support specific conditions and diseases as well. Check out the Revolution Health Multiple Sclerosis Support.

everydayHealth provides health information from A to Z, including active discussions, expert advice, and even recipes. There is so much to take in, but take your time. There is more.

is "combining forces" with Health Central., a leading publisher of online health

In a joint message from
Christopher M. Schroeder, CEO of HealthCentral and Ron Gutman, Founder and CEO of Wellsphere, they said, "Our communities offer unparalleled insight, practical advice, and inspiration for people who want to live better and fuller lives."

Look at the tips on fashion recently posted by MerelyMe in the Health Center's Multiple Sclerosis Central. Browse through this section and you will find columns written by other favorites such as Lisa Emrich and Mandy Crest.

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Wednesday, January 28, 2009

January Health Observances

The month of January has important health observances and I want to talk abut two of them.
January is National Glaucoma Awareness Month, sponsored by Prevent Blindness America.

Glaucoma? Many of us know people who have had glaucoma without having a disability. It cannot be cured, but it is often manageable. There are several treatments including eye drops, oral medication, and surgery. My uncle had surgery and has enjoyed good sight for years now. So if there are treatments, why is an awareness month needed?
(read more about glaucoma awareness
and preventing birth defects)

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Tuesday, January 27, 2009

Someone's Mother

Seventeen years ago, I was scared. I felt so alone.
My life, on that very night was about to take a turn that I could never, ever change.
Life as I knew it, was over.

Seventeen years ago, on the eve of today, I cried myself to sleep.
The next day, I was to become a mother. My first son was to be born. Man, was I scared. I remember pacing around my room. Folding clothes, placing them in the dresser. Then refolding them. People call it nesting, I called it freaking out.

Four days prior to this moment, I was told the baby was breach. The next day, I went back to the hospital, they were going to move him manually.
Yes, manually.'s as fun as it sounds.
They began the procedure, by pushing on my belly. "This baby wasnt budging." a nurse said as she pushed with all her might on my swollen body.
A specialist entered the room, examined me(which at 34 weeks is no pleasure walk in the park), and then the ultrasound. The baby was stuck. The head under my rib cage, the feet, legs in a sitting position. And, there was not enough fluid to attempt the procedure again. They would push,the baby could move right back, the cord could be collapsed and then the rest of what the Doc said just blurred. The last thing I remember was, "Considering the kidney issues(mine), the baby in breach, you will have to come in on Monday for a C-section". Dazed, I could only say, "O.K."

Monday came, I was awake during the whole surgery. That was a trip in itself. My mother came in the operating room with me. Well to make a long story short, we had no idea if the baby was boy or girl. Twenty minutes into the surgery the Doc asked what names I had picked out. I replied Haley or Paul. Then he popped this little tiny baby with mounds of hair over the blue surgical barrier, and there he was, Paul Michael. I will never forget that moment. Nothing at that very second mattered. Not the burning in my back from the epidural, not the fact that my face felt like it was going to explode from being tilted. His eyes were wide, his lungs were strong. I was strapped down still unable to hold him, to feel him, Gramma had the honors. God he was beautiful! I remember weeping. After that I don't remember much. The pain medication kicked in pretty quick. lol... wooo hooo loopy yes I was.
Then the news came. He had to stay in the nursery. He was tiny, just 5 pounds. He was 6 weeks early. Then more news came. There something wrong with his heart. He needed to see a specialist. They scheduled an appointment with the top pediatric cardiologist in the state, for the day we left the hospital. They assured me, it was just a mur mur, and common in babies born early.
They were wrong. That day is a blur as well. I remember standing in a dark room with my precious son, staring at a screen. On this screen was a color image of his heart. Dr. Diana was pointing out the hole in his heart. The nurse had to catch me as my knees gave way. I cried all the way home.
They avoided surgery and monitored how he was doing, at 8 weeks old he was back in the hospital. He had turned blue, I rushed him to the ER. We spent the next 2 weeks in the hospital. This child had tubes everywhere, needles probing him, and he had to stay in a tent. He was only allowed to be out of it a total of an hour a day. Devastating. But again, he pulled through. By the time he was 5, he got the all clear. The muscle had grown over/around the hole. That had to be the most joyous day.
Today, he is known here, as the Teen, Cave Dweller, Rocker. Yes the rebel gum chewer. He turns 17 today. I turn with him.
Bless this precious precious son. To see him now as he towers over me.(Although he knows I can still take him out. I know he is reading this,hi Paulie)To watch silly movies or even deep serious film, and discuss the topics. To see a comedian and burn the punch lines for the next month or two. He gets Monty Python(need I say more?). To sit and chat with him, there are moments when I get lost in his eyes. Those dark chocolate eyes, I am transported back to that day when I first looked into them. Like a short film, all the moments of this little man deluge my brain. From day one to the present.
At 17, I feel pangs of my growing as well, and yet I am satisfied, comforted in knowing what kind of human being he truly is in his heart. His talents are incredible from his music to his writing. I am in awe and I am jealous, his thoughts and his style of writing blow me away. My pride wells, that he is my son. That he is who he is.

His fortitude, his common sense, his outlook on life and his own future.
His future. There was a time when I had thought that was limited. Yet he fought, and he survived, from day one.
I will never forget that day. The day I became someone's mother. The day I became Paul's mother.

Happy Birthday Paul! 143
(Baloney hater)


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Saturday, January 24, 2009

MS and Depression?

If you have MS, or even another chronic disease, chances are you are familiar with depression. Merely Me interviewed a psychologist about the relationship between biology and psychology when a chronic illness is involved.

Read her interview. As usual, she did a good job.

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Thursday, January 22, 2009

It's All in the Attitude

"Ability is what you're capable of doing.
Motivation determines what you do.
Attitude determines how well you do it."
~ Lou Holtz (January6, 1937 - )

My particular disability is Multiple Sclerosis, however, MS did not take away all of my abilities. I cannot walk, but I can guide my chair. I can no longer work full time, but I can earn a little and manage my finances. MS has not yet tampered with my memory or cognitive abilities, so I can still think and write and enjoy. I am a person with a disability, but I am also a person with abilities. I should take advantage of them.

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Thursday, January 15, 2009

My Wheelchair Needs Brakes!

Let's look at the wheelchair wildly careening down the hill because the caregiver's hand accidently slipped. There is a solution, and it's surprising no one thought of it before.

It's as simple as customizing a wheelchair with bicycle brakes so the pusher has control. Veech Breakwell received an inventor's award, and he expects to have brake kits available for sale before too long.

But not so fast! Read the comments where a former caregiver and potential wheeler voices his objections to that method of managing an occupied wheelchair on an incline. At any rate, be careful wheelers, when traveling in hilly terrain!

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Tuesday, January 13, 2009

Learning from the Innocent

socks from Taylor
I can no longer walk. My grandchildren have known me only in my Amigo scooter. When the grandkids were very young, each one of them, in their own time and in their own way, asked me why I couldn't walk. I did my best to explain to them about how MS results in less function. Not easy to explain to children. Not easy for children to understand.

Taylor, barely more than a toddler herself, was the first to offer to teach me to walk. She was so sure she could teach me, because it really isn't too difficult. She learned to walk, so surely I could learn, too, if only I would try. She wasn't one to give up, and we went through that scenario several times.

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Monday, January 5, 2009

MS Without Borders

Life is not easy with MS. It is even more difficult to have MS in the wrong country. MS is such a personal disease, MSers may be unlikely to stop and look at the bigger picture. How is the world coping with MS? How are various countries researching, treating and providing diagnoses?

Multiple Sclerosis does not discriminate based on geographic boundaries, but treatment, management, and even awareness relies strongly on national ties. In one country, an MSer has access to state-of-the-art diagnostics, doctors and disease-modifying treatments. In another neighboring country, an MSer does not even know what is happening and has no idea where to go or what to ask. Some doctors do not have diagnostic tools or training, and there are few treatments available anyway. The difference is circumstance of birth country. MS is everywhere, but managing MS differs drastically in different countries.

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Saturday, January 3, 2009


Dramatic entrances I always figured I came in this world screaming, I plan on going out the same.Now don't get all in a tizzy. I am not going anywhere...yet. One day, yeah I guess's the way of this life. Where we begin and we end.
And all the in between we call living.
Hmmm...We all live so very differently. Yet in a very simplistic view of it? We all have the same common goal. To make it to the next day. The other side. Maybe a little more haggard...a little more muddied...more confused......or on a good day...with some clarity.

From the moment we awake...or goal stretches us to just make it to that soft pillow again. And then renew to another day. All that....that "stuff" we complete in the meantime...fills the time to get to the otherside.
Some having nothing to do with that endeavor. Some, having everything to do with it.

Seeking solitude. Each finding our serenity in places others would never venture. Dreaming of new ventures. New lives. the big picture, It's all the same. We may look different, act different..change day to day. We are all the same. Just looking for our piece. Our piece of???? This life.

Living in bubbles. Living in our own little worlds. For a time or forever. Whatever gets us through. Wanting. Yearning. Lusting. To? Feel alive? Feel the ticker beat like crazy. To have beautiful images pass before our eyes. Burning within our souls.

Some never see parts of us. Some only see what we want them to see to know. Waiting for the questions. The answers sit.
Sharing our deepest most secretive ramblings. Resting assured, there are others like us. Living parallel lives. exist. To breathe. Blood pumping through the veins. Wild passionate. Calm and serene. Rage filled. Melancholy. To catatonic. All striving for the common, the same, no different. To feel alive. To know it here, pounding in your chest. Breathless at times. Suffocating others. Claiming a stake. Wandering off.
Returning to the fold. Trapping within the negative. Pulling out of it with an indifference. Jaded. Yet vibrant. All to just get to other side.
To exclaim, I made it...once again. Maybe a bit bruised and battered. A worse for wear. Stronger. Undying. Doing it for ourselves. For our love. No one else's. Along this trek, we embrace new lives within our own. Taking comfort in the similarities, apparent. All unique in our own singularity. And all soo much the same. In the core. Understanding, forgiving. Forgiving, for there will be a day when we seek that redemption upon ourselves. Coming around and going around. It happens. It is the hum of life. The murmur we hear when alone within our thoughts. The droning white noise. Bright. Piercing at times. Startling. For all that comes my way...I give it back.

I will not be broken. I will not allow it.

Keeping my bright world tempered...dim. Occasionally rekindling. Igniting those fires. Other times, smoldering.


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Thursday, January 1, 2009

As he lay in his coffin, Alucard pondered how to explain to

Carrie the depth of aloneness he felt as vampire. “Do you know the feeling you have upon awakening? In that instant when you are truly alone? There is that brief second before the people return, before you are able to orient yourself to that which surrounds you, before all of the data of previous perceptions are reloaded. It is a fearful time, that instant when all that defines your oneness is nonexistent. It is the closest that humans can approach death. For humans, ego is what is of primary importance when they try to imagine life everlasting. As they view infinity, it is always from the perception of self; there is simply no other way to experience it.