Carnival of MS Bloggers #104

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Celebrating FOUR years of the Carnival of MS Bloggers!

This community began as an attempt to connect the individuals online who were talking about multiple sclerosis on their personal blogs.  As a health policy blogger, I had witnessed the power of the weekly carnival to connect persons in the health policy community as well as the medical blogging community.  I wanted to do the same for patients and caregivers in the MS community who were talking about any and all aspects of their lives with MS.

The MS blogging community barely had 100 bloggers at the end of 2007.  Now there are over 600 listed blogs in the MS Blogging Community.  As new bloggers contact me, I update the listing so that everybody can be included.  Take a look, even the blog of the National MS Society is listed.  You can be too!!

(c) Julie Baker of Maybe I'm Just Lazy

If you have MS and blog about it (even if only occasionally), send me a quick email introducing yourself.  Be sure to include the URL of your blog, please.  However, I must say upfront that websites/blogs which are strictly commercial in nature will not be listed.  If you are promoting a book, a consulting business, or product, I'm sorry...that is not what this community is about.

As the founder and leader of the Carnival of MS Bloggers, I personally read as many blog posts as possible each and every week from throughout the community.  Sometimes I will select excellent blog posts to feature, however it is much appreciated when persons submit a chosen post to be included in an edition of the Carnival.  Don't be shy, send me your links!

A Special Role?

by Judy of Peace Be With You

We MS bloggers

though quite vocal comprise a

small minority.

If ten thousand blog,

we're only .4%

of world MSers.

In our special role,

should we be spokespersons for

the ones with no voice?

Let your voice be heard.  I'm excited to continue the Carnival tradition into our FIFTH YEAR of community blogging.  I wish everybody very happy holidays and safe travels this season.  Best wishes for a healthy year in 2012.

This concludes the 104th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #103

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:

• You work for an ADA-covered employer
• You are “qualified” to do the job; AND
• You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

• How is MS affecting your job, potential job, or application process?
• Why are you requesting accommodations?
• What accommodations or changes to your work will be effective?
• What information will you need to provide to your employer (or potential employer)?
• When should you speak with your employer (or potential employer)?
• Who should you involve in the conversation?
• How should you follow-up on your request?
• What are your rights if things go wrong?

These resources can provide more help and information:

• The Win-Win Approach to Reasonable Accommodations
• ADA - Your Employment Rights as an Individual With a Disability
• Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
• SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.


This concludes the 103rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #102

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Thanksgiving, Gratitude, and Faith

Reflecting on Abundant Beauty

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

Loved Ones

by Judy of Peace Be With You

A loved one’s presence

provides prized companionship

and valued support.

Buoyed by precious love,

one’s spirit takes flight and soars

past stressful moments.

Though hard times exist,

a sense of kinship prevails.

One is not alone.

Wait a Minute

by Mary of Travelogue for the Universe

Wait a minute,

just a slice of time,

does it look like a pickle slice?

Wait a minute,

catch your breath,

can you hold it,

in your hands?

Wait a minute,

did you ever hear,

"Wait a minute,"

and it really meant to

"stop?"

Wait a minute,

60 seconds,

how far does Earth travel

in that time?

Wait a minute,

adult time out,

wait a sec is

another way to say,

Wait a minute,

or a second,

take a moment,

for a change.

Our circumstances have nothing to do with our happiness

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.


Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.


The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.


When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.


The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.


The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?


This concludes the 102nd edition of the Carnival.  Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 6, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #101

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Unexpected Surprises

Sticks

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard.  These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked  like  trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a  little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard  for these three sticks.  Much to my surprise, all three of them took root.  Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but  I had  planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow.  She made the move while I was at work, and to my dismay she had taken the wrong tree.  Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to  a height of over 6 feet.

That middle sized  tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings.   The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen.   The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now  8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care.  I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug.  I’m not sure that those daily injections will ultimately make a difference in the course of my disease.  But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

A Letter

from Travelogue for the Universe

from the clinic,

nearly left it

there,

on the table,

by my diary,

of my shots

i have had

for

4 years

now,

but the letter,

had a feel there,

out of place,

i had a

feeling,

it was not a simple

letter

but a message

that

my study

will

end soon.

I told

my patty,

my sweet voice

who monitors

my

progress,

that

it was

weird,

being told after

4 years

that this will all

change,

somehow.

She said,

everybody felt

that way.

Seemed like I was just getting used to it,

having more faith that this is the right

regimen.

Knowing the

funding

has a lot to do

with

well,

everything,

and politics,

is right up there too,

and when we feel

powerless,

it is because

we

are.

stay tuned, you know as much as i do.

will find the results of my study in January

and discuss next steps.

4 years no exacerbation,

hope they keep me on what i am on,

whatever that turns out to be.

mary

Secondary Progressive MS, When MS Retires

by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.


This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 22, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #100

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."


This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 8, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #99

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Parking with MS, It's Not Always MS, Living Drug Free, Grabbing Life

Marking Time With Parking Permits

by Lisa Emrich of Brass and Ivory: Life with MS and RA

As is true for many who are newly-diagnosed, my first year after diagnosis was full of learning experiences. I had a significant relapse that created a need for months of occupational therapy to regain use of my fingers on my left hand. I had another relapse only months after diagnosis and underwent the 5-day Solumedrol treatment twice in one year.

Another thing which happened only one year after I first joined the neurology clinic was that I began tripping. I fell on our stairs a number of times, leaving bruises on my shins. I fell on the sidewalk outside. I was having doubts as to my ability to walk any distance at all, for good reason.

It was early October and the weather was turning wet and chilly. My neurologist suggested that I get a handicapped placard. (Actually I had asked him about getting a placard during our previous appointment, but that was before I told him that I had fallen several times.) He wanted me to be safe. He didn't want me walking on cold, wet (and soon to be icy) sidewalks while tired. That last thing we both wanted was for me to slip in a crosswalk and be hit by a car.

So in October 2006, I applied for my very own disabled handicapped parking permit. In the state of Virginia, these permits are valid for five years. This past week I received my renewed parking permit. Somehow seeing the new expiration date (October 2016) on this valuable piece of plastic makes me realize how long I've been living with MS already.

On one hand, not very long at all. On the other hand, the next time I have to renew my parking permit, it will have been more than 16 years since I first went blind. Just made me stop and think.

When is it Time to Get the Blue Placard?

by Christie of The Lesion Journals

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it. Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too.

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard. I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

It’s Not What it Seems

by Laura of Inside My Story

A recent conversation with my daughter went something like this:

Daughter: (looking worried)  Mom, are you alright?

Me: (puzzled)  Yes, why?

Daughter:  I’m worried about you.

Me:  Ok, why?

Daughter:  Because you put boxes of macaroni and cheese in the freezer.

Me:  (laughing and very tempted not to explain) Relax, I’m not losing it.  I know I put it there because I’m  trying to conquer some moths that have taken over my pantry.  The pasta is safe in the freezer.

Daughter: (looking relieved) You had me worried,  I thought it was  your MS.

Now  first of all, remember that tip because if you ever get those moths that want to take over your boxes of cereal or other dry goods, the freezer is the best hiding place to stash their favorite grains.

The second point in sharing this episode is it illustrates how it is entirely too easy to worry and identify all unusual symptoms and behaviors as being connected to my MS.  So many times I think this MiSerable disease is acting up, only to slowly realize it was something entirely separate and unrelated.

My right foot great toe had a problem a while back and the podiatrist treated it as a neuropathic pain, complete with a compounded formula gabapentin cream to put on it two times a day for several weeks to quiet the nerve.  It solved the problem and that toe hadn’t bothered me for over a year when suddenly last week the same toe was back to throbbing.  I hobbled around on it, assuming it was my MS once again.  I was cursing myself for throwing away that jar of leftover cream.  I was pleasantly surprised when on day three of agony, I discovered by trimming my nail the pain went away.  I was working on an ingrown nail, but had assumed it was my MS.

Do you and your family just jump to the conclusion that your MS is to be blamed when problems arise?  We sure do in my house.  It’s much too easy to do when MS is a constant companion and a source of so many problems.

Macaroni in the freezer?  Ingrown toe nails?  Sometimes it is good to have an explanation other than it’s my MS;  it takes the blame way too often and it’s nice to give it a break.

PTSD: A Head Case Study

by Kim Dolce from Doc, It Hurts When I Do This...

I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.

I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.

Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.

Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.

It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.

I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.

Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.

I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.

Learning To Live Again With Multiple Sclerosis!

by Nickey at Multiple Sclerosis And Our Battles With Autoimmune Disorders

WOW! Things have changed since I last posted. Have you found yourself in a slump or depressed telling yourself everyday "tomorrow I will do it" or "tomorrow will be better" but it just doesn't happen? I was there! I was stuck in what I call my funk. I woke up one day and said "NO MORE". No matter how much it hurts I will Learn To Take My Life Back. You see, I had let Multiple Sclerosis take my life from me but not anymore. It was like I was stuck inside myself screaming to get out.

It all started back in October of 2010 when I went in to my local general practitioners office just to get my pulse and blood pressure taken. After sitting for 15 minutes with no movement they came in and took them both. The poor nurse nearly fainted and did it again then ran out of the room. She came back with a wheel chair and said "your doctor wants you in the Emergency Room NOW". After lots of IV fluids and medications to get my pulse and blood pressure down they admitted me for all the wonderful testing. Thank God I wasn't having a heart attack. See we lost our father when he was just one year older than me now at 34yrs old of a massive heart attack.

After being admitted they did all the stress test. I barely started the stress test and they hurried and got me off of there b/c they just knew I was going to have a heart attack. After that hospital could not figure out why this was happening they transferred me to another, bigger hospital in the Cities. This hospital just knew I had what my fathers fate was. They then decided I had to have and angiogram to see if my artery needed to be ballooned. Come to find out my arteries were as clean as a new born baby.

During my stay in the hospital a picture was taken of me. At the time of the picture I was shocked to say at 5 "8" I weighed 290 pounds. When my mother seen me she told me "Nickey, if I didn't know it was your truck you were getting out of I would have never known it was you". She didn't even recognize her own daughter and neither did I. This picture did something to me. I didn't know the person I was looking at. I stared at myself in the mirror and had no idea who that person was anymore. I didn't recognize her. I was over medicated, over weight, depressed and ready to give up. Through my faith and looking at my little boy who needs his mommy so bad I said once and for all "NO MORE!!"

That day I started taking my life back. Without telling anyone of my plans I started my journey. I began by doing a complete lifestyle change by getting off of all those medications I didn't need to be on and eating the healthiest foods I could find. At first I couldn't add any exercise b/c I was at such a weight were just walking to the kitchen would cause me chest pains. I had also found out that one of the meds they put me on caused depression so I immediately got off of that one and OMG did the clouds clear. I could think again! I could live again! I could Love again, not just others but MYSELF!

I was so overweight that my cholesterol was off the charts. They couldn't even calculate it. My blood pressure was crazy high and my blood sugar was on the brink of me being a diabetic. Just from changing my portions and what I ate I lost 60 pounds. After the 60 pounds was off I began exercising to get my legs working again. I am happy to say that I am now down 80 pounds and weigh 210. My goal is 150-160. So I still have some work to go.

I now juice all my fruits and vegetables, which is so good. I also upped all my vitamins. I had my labs drawn again and I am happy to say that everything came back perfect. My blood pressure is perfect, my cholesterol is perfect, my sugar is in the normal range but a little high. I no longer eat meat unless it is turkey or fish and eat or drink lots of fruits and veggies.

My latest add on to my journey has been getting a recumbent bike. All those spasms I was having in my legs are now cut in half if not more. I make myself do a minimum of 30 minutes a day and if I am having a good day I do an hour. My energy is up and I am feeling better. Don't get me wrong MS'ers I still have all the wonderful pains and aches, fatigues and struggles that come with MS but life is so much better. For the first time in 4 years I feel like I am living again. You see it's all in how you look at yourself and were your mental status is.

With all this said I want you all to know that no matter your weight or if your in a wheel chair or using a cane like I was YOU CAN DO THIS. Never give up and always push yourself to do something everyday to make yourself feel good about YOU. It can be something as small as looking in the mirror and saying to yourself "I love myself and like loving myself". If you feel lost or hopeless remember you are never alone and Never Give Up. I am a spiritual person and I believe through mindful breathing, meditation and pushing ourselves past that mental block we can get our lives back. Never say Can't but always try.

To all my readers out there we may have never met or may not have even spoken with one another but please know you are not alone in this battle called life. Life is so much better when we fight for ourselves. I will be writing more about the juicing and bike riding.

With Love and Hugs NEVER GIVE UP!!


This concludes the 99th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 27, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 25, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #98

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Eager Bladders, Fatalistic Humor, Caregiver Survey

I. P. Freely

by My Odd Sock

Nah, this isn’t about the work of legendary folk-lore author, I. P. Freely

It’s about bladder control pure and simple.  Or lack thereof in regards to many of us with multiple sclerosis.

You see, most of the time I HAVE bladder control.  This is about the times when my bladder controls ME!  Like a loyal dog to its master, when it goes–I go!

My problem usually occurs in the morning when my eyes are bloodshot and my bladder is brimming like a cup of Maxwell House.

I do my quickest spasticity-induced, “quasi-shuffle-foot drag” (Government moves faster!) into the powder room.  But it isn’t quick enough for my seemingly ping-pong ball sized bladder.

Typical view of preferred potty distance.

Vicinity when my bladder opens flood-gates.

Because my bladder likes to get a jump start on the day as soon as I cross the threshold of the bathroom.  (In Track & Field, this is known as a “false-start.”)

Needless to say, my day begins with damp UnderRoos.  (Stealing the slogan from Folgers….”The worst part of waking up is urine in your lap!”)

My sometimes accidental basement bathroom.

But the bathroom isn’t the only place where yours truly has had bladder issues…outside in the yard…in the basement…in the shower–wherever I suddenly find myself far enough away from the potty…and not enough leg umph to get me there!

My problem seems to occur when I wait too long.  Then, when it is too late–I have to go–and go NOW!

Luckily the urge has never struck when I have been in public.

I’m sure you can relate to urgency mishaps.  Do they happen to you?  Are you prone to have problems any particular time of day?  Ever have an accident in public?

Please share your story in a comment.  Your words will have me sitting on the edge of my (toilet) seat with anticipation!

So I doubt the work of I. P. Freely will ever match the popularity of a James Mitchener, Stephen King or J. K. Rowlings, but the impact of the author’s words influence nearly everyday of my MS filled life.

Why the long face?

by Andy of our lady of the multiple sclerosi

New Neurologist: The First Visit

 

Props: 

Projected Sign:  No Eating Nor Drinking While in This Office (We’ve had too many spills!!!)

Table

Eyeglasses

Hospital Gown

File and pen

Neurologist (writing): “Do you have any problems with your eyes?”

Me (seated – table): “Not yet.”

Neurologist (writing): “Do you have any problems with bladder, bowel control?”

Me: “Not yet.”

Neurologist (Removes glasses, looks up appearing exasperated already): “You really shouldn’t be so fatalistic. Any problems swallowing?”

Me (pausing): “No.”

Perfect Chicken Broth

by Whitney at Nutrisclerosis

Use 1 whole chicken don't forget the feet. Cut the chicken up, put the whole thing in the stock pot and just barely cover it with water. Add 2 Tbs. of apple cider vinegar and let it soak for a half an hour to an hour. The chicken should be truly free range, preferable raised by someone you had a face to face conversation with about it's eating habits (lots of grass, bugs, lizards, seeds, snakes, and corn with  no rat or mouse shit in it) and habitat. Also no hormones or antibiotics. I am very  much into finding delicious heritage breeds like Dorking or Rhode Island Red. Ok, moving on.

Bring to a slow boil all the while adding: a slice of lemon (I use the end about a third of an inch slice), 2 bay leaves, salt, pepper, 1/2 cup of fresh parsley slightly chopped, 1 or 2 carrots, 1 onion, 1 or 2 stalks of celery, 3-5 cloves of garlic crushed. Once it boils, turn down to low and simmer for 2 hours. Skim the scum.

After 2 hours take the meat off the bones and put the bones back in and simmer them for another 20 or 30 minutes. Turn the heat off, let it cook a little and then strain it and throw all the chunks out. That's it there's the broth. Don't skim the fat off it when it cools. Eat the fat, or skim it off and use it to cook something else. Or give the fat to me, I will use it. I use the meat in recipes, and usually freeze it. I also triple this recipe and make it in my giant zillion quart stock pot.

MS Caregiver Survey

I (Lisa) received the same following email asking me to post this survey in the Carnival, but Patrick went beyond the call of duty.  Read his post below and complete the survey before October 21, 2011.

[Patrick] Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

 www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the [National] MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer


This concludes the 98th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 13, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 11, 2011.

Thank you.

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