Carnival of MS Bloggers #70

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

On the Journey and Self-Identity

A New Way to Travel

by Judy at Peace Be With You

My mind is open.
I will try anything once
if it shows promise.

Experimenting,
an avenue for testing
possibilities.

In my eagerness
for taking roads less traveled,
I expand my world.

Don't Be the Patient 
by Christie of The Lesion Journals

Be the friend. Be the colleague.
Be the partner, lover, and best friend.
Be the artist. Be the writer.
Be the surfer, swimmer, and diver.
Be the gardener. Be the cyclist.
Be the horn player, conductor, and flutist.
Be the bingo player. Be the deep sea fisher.
Be the cousin, sister, and daughter.
Be the baker. Be the photographer.
Be the wine connoisseur, cheese monger, and chef.
Be the person other than just the “Multiple Sclerosis” patient.

I Was Fully Me

by Judy at Peace Be With You

Met some friends today.
We talked about a book.
It was like old times.

I felt myself soar.
My walker sat on the side
ignored by us all.

I got to pretend.
Briefly my world expanded.
I was fully me.

I am Still Me 

by Lisa Emrich at Brass and Ivory

When I read about chronic illness in discussions of public health policy, I note the following information is shared and sited repeatedly.

Chronic diseases – such as heart disease, stroke, cancer, diabetes, and arthritis – are among the most common, costly, and preventable of all health problems in the U.S.  Chronic diseases are the leading cause of death and disability in the U.S.  Four modifiable health risk behaviors—lack of physical activity, poor nutrition, tobacco use, and excessive alcohol consumption—are responsible for much of the illness, suffering, and early death related to chronic diseases.
- Centers for Disease Control and Prevention (CDC)

I live with chronic disease but I'm not represented in the top five diseases.  It is assumed that people could prevent their chronic illnesses if only they led a healthier lifestyle.  But you don't develop multiple sclerosis or rheumatoid arthritis because you ate poorly, drank alcohol or were physically inactive.  (Smoking, however, has been shown in studies to increase the likelihood of developing MS.)

For next week's “Patients For A Moment” edition, Leslie asks the following question:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

What would I want people to know?  That's a tough one because I don't often think that non-chronically ill people would want to know more about my illness, honestly.  Not unless they had a direct connection to me personally.

Who are the non-chronically ill?

 In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.²

Let me use my own my own family (and that of Rob's) as an example.  There are three adults aged 60-75 and five adults aged 34-41.  Of those eight adults, four live with chronic disease.  Myself and our parents.  Our siblings are "healthy."  (So we do represent 1 out of 2 adults living with at least one chronic illness.)

What would I want the healthy siblings to know?  Let me think (type) out loud.

I don't enjoy having these diseases.  In fact, I despise them.  But they are a part of me now, so I can't comfortably despise them too much.  I don't want to hate myself just because I have illnesses.

Notice I didn't say that I am ill.  I'm not "sick."  If I have a cold or bronchitis, then I am sick.  But MS and RA are not sicknesses, they are diseases which are constantly working within my body.  They are always active whether we know it or not.

There is the underlying fear of waking up one day and finding that one of the diseases has decided to attack and flare such that it takes away another little part of me or my abilities.  That fear can become oppressive and in the quiet of the day, I am afraid. 

How do I deal with that fear?

Sometimes I cry.  Sometimes I look to the people who have been more affected by these diseases and observe how wonderfully they live their lives.  That gives me inspiration that no matter what, I will be okay.  I have already adapted to changing circumstances, I will continue to adapt as necessary.

That's what humans do so well.  We adapt.  We are flexible creatures who do not need generations to adapt to new circumstances.  We don't have generations, we only have our own life to live.

One life to live.

That's what I would want the non-chronic illness people to know.  We only have this one time through life.  It isn't a straight journey, but has many twists and turns.  True for all of us, non-chronically ill or chronically ill.

Now I'm highly adaptable (I have no choice) but I can't do this alone.  I need your help and support.  I don't need to be pitied or ignored.  I don't need to be coddled or stifled.

I do need your love and support.  Treat me as you would like to be treated if you were in my situation.  I am just like you, but traveling a slightly different path.  I may be "diseased" but I am still me.

I am still me.

Behind the Smile

by Judy at Peace Be With You

The quiet courage
so many MSers show
just leaves me in awe.

People have no clue
how much sadness lies hidden
behind a bright smile.

This challenge is tough.
We all make the best of it.
Sometimes it's too much.

This concludes the 70th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 9, 2010. 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, September 7, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #69

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

Summer Effects, Inspiration, and Determination

Every day, I embrace
by Dan Digmann

My days are numbered. Medical experts essentially tell me this all the time.

I heard it most recently when I attended an MS conference last weekend hosted by the University of Michigan Hospital in Ann Arbor.

In not so many words, they said that most people with Multiple Sclerosis live with the relapsing-remitting form of the disease for so long and eventually transition to the secondary-progressive form after they’ve had the disease for 10 years.

I hate it when I go to these kinds of things because they often provide a subtle yet very in-my-face reminder that I truly have a chronic, progressive disease. I don’t blame them for their pessimistic forecasts because I realize the medical facts don’t lie.

With a decade under my belt, I guess I’m living on borrowed time.

While I don’t consciously think about it, I wonder if I unconsciously realize this with every step I take. Every stair I climb. Every race I run. Every shoe I tie. Every workday I complete. Every book I read. Every sentence I write.

Everything I do.

Such a reality check has the potential to throw me off my game and into a woe-is-me abyss that could consume my life. But I won’t let this happen. Guided by the charge of Coach Jimmy Valvano who said, “Don’t give up. Don’t ever give up.”

With a decade under my belt I know I’m living on, regardless what form of Multiple Sclerosis I have.

I consciously realize this with every challenge I face. Every obstacle I overcome. Every frustration I feel. Every battle I lose. Every battle I win. Every moment I live to its fullest.

Every day, I embrace.

Showing No Mercy...Unless You Control IT
by Blinders Off

I WILL BEAT YOU DOWN IF YOU LET ME!!

This heat wave is no joke! If hell is hotter than what it has been for the past three months...I pray living my life by the Golden Rule is my ticket into heaven. :-)

Multiple Sclerosis and I have been battling during this heat wave. IT is getting upset with me because I have not allowed IT to take over. IT needs to know I am in control of my body! There was a time I allowed IT to control my body, but I did not like the way IT played. I use to go about my daily routine as if I was not living with MS (IT) during the summer months and would have to be injected with 3000 mg of Solu-Medrol two to three times during the summer because IT would affect my body in a negative way for days.

This is the first summer in years; I have not had to have an IV Infusion. I know that is because instead of allowing IT to control me, I took control of IT by LISTENING to MY BODY. I have learned to say NO, and still be productive in my LIFE and that is the greatest feeling ever. When I was forced to quit working in my dream job eight years ago, I thought my life was over. I like my new non-paying job better. I now utilized the skills I have learned over the years to help and be a voice for others and work with disadvantage children.

Yes, I have Multiple Sclerosis, but to me MS means I AM Mighty Strong!

There’s a Reason They’re Summer Fruits and Vegetables
by Mark and Yumi

Summer is almost over but yet we’re still feeling the heat. Although officially fall has arrived, the thermometer is not agreeing because we’re at our peak of temps here in Japan. To make things worse, we live in a big city where the asphalt and high rises seem to magnify the heat.

I’m sure most patients with Multiple Sclerosis dread this season because of the effects, increased fatigue and the like. The heat of summer exacerbates MS symptoms, (Uhthoff’s symptom,) arguably bringing them to their worst. We all have our ways of trying to cope, but often it’s difficult to find relief short of just staying home under the air conditioner. In an attempt to stay cool my first summer out of the hospital with MS, I carried around an ice-pack and traveled by cab as much as possible. But as time went on I realized that there is a way to lessen the effects of the heat.

I’m sure many of you have wondered why there are some days you’re relatively symptom-free, yet other days you feel absolutely miserable. Perhaps what you’re putting into your body each day is to thank or to blame for this.

For centuries the Chinese have viewed human beings as part of the natural environment. As such, our bodies are not always the same throughout the year: rather, they’re continually changing with the changes in season. To adjust to these changes, nature has provided what we need in the form of seasonal fruits and vegetables.

It’s easy to forget what fruits and veggies are actually in season, however, thanks to modern horticulture technology. As much as anyone, I appreciate that I can buy my favorite veggies any time of year, should I be in the mood. But by eating things out of season, we’re not in tune with the seasonality and can in turn get sick.

In general, any fruits or veggies are good for you. But there’s a reason that they’re ‘summer’ fruits and vegetables. To counteract the heat brought on by summer, fruits and vegetables that are in season at this time actually have a cooling effect on the body. Specifically, cucumbers, zucchini, asparagus, tomatoes, eggplant, water melons, and tropical fruits are good to cool us down. On the other hand, garlic, ginger, onions, and leeks could exacerbate symptoms because they warm the body, and so their use should be avoided or minimized in summer.

Throughout history, our ancestors have adjusted to the changes in nature by eating what was available seasonally in their environment. Of course, this wasn’t by conscious effort. It was just a matter of eating what they could find. But because nowadays many fruits and veggies are accessible year-round, and especially because we’re dealing with a difficult illness like MS, we need to take special care of what we put in our bodies so we can properly adjust with the seasonal changes.

Take care of yourselves and enjoy the effects of what nature has provided for us.

SoluMedrol and Home PT
by Maryann Rubin

First of all, I had a 3-day course of IV SoluMedrol last week because my MS was getting worse. It helped with my energy level and a little bit with leg weakness. The RN used something called a Mediball. It was the neatest thing. The solution is in a small ball, which is pressurized to deliver the medicine over a 1-hour period. The beauty is, you can stick it in your pocket and walk around--you are not attached to a pole IV set-up.

While the RN was here, she mentioned that I could get Physical Therapy through their company (Gentiva) to help me with my balance and walking. This morning, a physical therapist came out and gave me an assessment. She will be coming twice a week for four weeks, giving me tips and exercises to do on my own. Then, the company has something called Safe Strides. This is a program that works with your eyes, your ears and your body, to help you walk and stand better.

I have a good feeling about this. I've been falling more often, and running into walls and doorways. Of course, the tremors don't help my walking any.

I feel like a real mess!

Because of stress and the hot weather we've been having, I had an MS flare and I was getting depressed--crying, feeling very sad, and getting angry. My PCP started me on Celexa, which actually is doing a very fine job leveling out my mood. The only side effect I've gotten is dry mouth, which is no big deal.

This concludes the 69th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 26, 2010. 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, August 24, 2010.

Thank you.

Comments for this post.