Dear MS,

We’ve been corresponding for some time now, but it’s been mainly a one–sided relationship. I wish you would take the time to listen to me and not make this so lopsided. I try to send you the message that I’m tired of this and would like to move on, but you don’t seem to be getting that message and you get in touch with me at the most inopportune time. I am not amused.

I never dreamed I would be the type of person to write a Dear John letter, but that’s exactly what I want to tell you. I want to break up – would you please just go away?

Tired of you,

Laura

We are fortunate that there are a tremendous amount of resources to assist people with Multiple Sclerosis. In fact there are so many that it can be confusing as to where to turn.

 First and foremost, if you are newly diagnosed, contact the National Multiple Sclerosis Society (NMSS), and in particular your local chapter.  They have online materials as well as printed ones,  that cover just about every MS topic for you and your family and friends.

The MS Foundation (MSF) and Multiple Sclerosis Association of America (MSAA) offer many ways to support the individual patient and are just a phone call away.

 Any of these three organizations are great places to begin your journey of understanding Multiple Sclerosis – knowledge is power and you need all the knowledge you can take in when living with MS.

 Even more powerful than these organizations, though, is the ability to talk directly with other people living with MS.  Most people don’t have a support group in their home town, but you don’t have to worry.  There are several excellent patient forums on line  – the people on these sites are  always ready to welcome a newly diagnosed person and lend support and are willing to answer your questions. Long established, MedHelp.org has an active MS Community and someone is almost always around to strike up a conversation with, most hours of the day. 

There is a fledgling site – multiplesclerosis.net  – that is worth a second look, too.  There is an extensive amount of information and areas for input from people with MS, including discussion forums and places to post your own story when you are ready to share. There is also an active blog section where many of us regularly share our thoughts.   

 If you are newly diagnosed, remember you don’t have to know everything immediately – your MS is going to be around and you have plenty of time to learn more.

Be well, be proactive-

Laura

If you are a new visitor to my blog, Inside MyStory: Life with MS and More, let me introduce myself.  If you already know me and my story, you might skip this blog and read something else.

I was diagnosed with Multiple Sclerosis in 2008 and after the initial disbelief, I quickly moved on to wanting to learn more and in turn help other to also understand more about this mysterious disease.

For the uninformed, MS is a disease of the central nervous system (brain and spine) and is sometimes viewed as an invisible disease.  We may look good, but our immune system is overactive and slowly creating havoc internally. Common problems with MS include balance, vision, bladder dysfunction and cognitive problems.  There’s lots of great information on the web to learn more about Multiple Sclerosis.

One site I am pleased to be associated with is http://multiplesclerosis.net, where  you will find factual answers to just about every question you might have about MS.

Support from others who have the same disease is beneficial and if you are living with a chronic disease I encourage you to find others who understand the challenges you face.  A good place to talk with other people who also have MS is at http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

You can find me at both sites – MS Net as a blogger and at MedHelp as a Community Leader.  If you come to either one, please be sure to say hi and let me know you are there.

Wishing you well,

Laura

Welcome to the third year of the  Health Activist Writer’s Month Challenge – sponsored by WEGO – this is a chance to get in the Blogging/Tweeting mode and produce something new each day in April. I participated in this HAWM challenge last year in a limited way, but I hope to be present more of the month this year. The challenge of producing something new and fresh each month is a fun one to consider.

WEGO Health is an excellent gathering point for people who want to use social media to advocate for their particular health awareness cause. WEGO has tips and ideas on how to build your advocacy network and the opportunity to interact with others who are experienced. The exchanges of ideas and encouragement through the WEGO network is excellent and the WEGO folks are regular participants in many national conferences on E-health and social media. They also sponsor Health Activists to attend these forums (and WEGO often covers the costs, too!).

Although I am not extremely active with WEGO in their forums and discussions, I follow many of their conversations and know it is an organization that does good in the online world. If you are interested in joining a health advocate network, be sure to check them out – new members to the advocacy network are always welcome (and it is free, of course!).

You can follow the blogging activity in April from WEGO advocates through their website, Facebook page or the Twitter feed at #HAWMC. And it’s not too late to join the Health Activist Writers challenge – become a member of WEGO through WEGOhealth.com and get those thoughts going – I would love to hear yours.

See you through the month.

Wishing you well, Laura

A brief update -  I have been blogging regularly, but am doing so on a new website, multiplesclerosis.net.  I’m excisted to be a part of a great team of writers who each bring their own perspective to MS.

Beginning  April 1 you should see me here quite a bit because it is the annual Health Advocate Writers Challenge (HAWC) sponsored by WEGO.  This challenge  is to use their prompts to post one new blog each day in April.  I did pretty good with that last year, but fell short of the entire  month.  We’ll see how I can do this year.

In the meantime, you can find my writings as well as those of my blogging peers over at

http://multiplesclerosis.net/blog/

be well,

Laura

March kicks off the season for Walks and Bike Rides and even tumbles in the mud, all for the purpose of raising awareness and funds for NMSS research and support programs.  This will be the fourth year for my MS Walk team, RAY OF HOPE – UD Alumni and Friends.  The first few years I was diagnosed, I didn’t think much about forming a team or even just walking as an individual.  I am not one much for asking for donations and soliciting money,  and certainly a longer walk on a chilly spring morning isn’t my idea of an ideal way of spending a Saturday morning.

When I finally did think through the idea a bit more, I pictured I would just give this a try once.   Our team is named after the former president of the University of Dayton, Brother Raymond Fitz,S.M, who was diagnosed with MS in the late 1980’s.  Brother Ray continues to work, teach and model living gracefully with MS on our campus.  He also plans to again make the walk with us this year, this time at our new venue in Kettering – Delco Park.  We are a mixture of friends, family, university employees and students and we come together for the purpose of raising awareness in our community about the need for support of programs and people with Multiple Sclerosis.

I’m so glad I didn’t stop after just one year of walking  -while I’m preparing to email people about joining us this year on our team,  I look at the lists from these previous years and can’t help but think about the participants who came out in support without knowing much about MS and how it affects our lives.  Inviting them to join a team certainly raised their Awareness of MS and added to the cause.

Then I think of the walks on the sidewalks of Kettering, the cars driving past us and their occupants seeing a wave of orange shirts making the way around the MS Walk route. Over the years, how many of those people were aware of the Orange campaign in March before seeing the walkers on the streets? From the simple decision to step out of my comfort zone and form an MS walk team, how many people have I reached and made aware of MS?

How many people have you touched and raised their awareness of MS? Probably so many more than you realize, even if it is just through the simple gesture of wearing your orange t-shirts.

The challenge this month is for everyone to find a way to do just a bit more – whether it be to come to a local walk, write letters,  or talk to people about your experiences with Multiple Sclerosis; we can all add to the awareness of this miserable disease and what still needs to be done for a cure.

I hope you will join  us one way or another in MS Awareness month activities.  We’re in this together.

Wishing you well,

Laura

Warning – mature audience conversation ahead….

Multiple Sclerosis is much like the weather these days- you don’t know what the next day or even the next hour might bring.  Here in Ohio we have seen the extremes and experienced all the seasons in one short week.  Last weekend, people were in shorts and enjoying outdoor activities in near 70 degree temperatures. The sun was bright and you could feel that people’s spirits were light and celebrated shedding the winter garb. Wise folks knew better than to think an early spring had arrived, but we couldn’t help but hold on to that hope.

Mid-week, you would have sworn we were in the midst of a hurricane, although we live 1,000 miles from any ocean shore.  Sustained winds of 60 mph and torrential sideways rain woke me in the predawn hours.  Fortunately the winds slowed to just the 25-30 mpg range in the daylight, but the heavy rains continued.   The balmy temperatures continued and hovered in the upper 60’s and gray skies lingered through the day .

It didn’t take but one more  cycle of the setting moon and rising sun to plunge the temperatures by 50 degrees, and we woke to single digits with the wind chill well below zero – that’s Fahrenheit and not Celsius.  We’ve begun to warm again a bit and it made to 20 degrees already this morning, but the snow is falling and the forecasters say we might get up to 4 inches of the white stuff.

My MS has been much the same as the weather -  mix in the good days with the not so good and you come up with a sloppy mix that’s hard to guess what’s next. There’s no big map to see what’s coming and there is no national forecast for people with MS to use to plan out the week.  What we all would give for a long range forecast, even if it matches the crazy ups and downs like our weather patterns.   Knowing in advance makes planning a easier, but that’s a luxury we don’t have for our daily health. And even if we did, there would always be the chance just like the weather  folks, that the forecast is wrong and we continue to be surprised.

Don’t say you weren’t forewarned – I just talked about the weather and my health in the same paragraphs, those two topics that  I used to joke that only the elderly would go on for hours about.  Maybe next time we can chat about blood pressure and toilet habits as well.

Wishing you well