MS Maze

Lisa Emrich of Brass and Ivory presents her Carnival of MS Bloggers #3. It’s a great opportunity to sample the writings of our fellow MS bloggers all in one location. Thank you, Lisa, for organizing the carnival.

While you’re at it, take a few moments to navigate around Brass and Ivory and read Lisa’s thought provoking posts regarding multiple sclerosis and big pharma. Her blog is a must read!

Multiple Sclerosis is a fascinating topic. I’d be interested in it even if I didn’t have it. It’s like a long mystery novel filled with twists and turns.

Still, there are times that I’d rather not think about it. I often wish we could go a full day in our home without mentioning the words. Alas, it is all but impossible.

Impossible because the signs and symptoms rarely give us respite. Impossible because I’ve become an MS blogger at two sites. Being an MS blogger has given me the opportunity to explore the topic fully and to express my own emotions and opinions on important issues. On the other hand, it forces me to give thought to MS at times when I’d rather not. It’s the yin and yang of life.

I try to keep in mind that every day there are new people being diagnosed with MS. They and their loved ones will be searching for kinship and answers and, hopefully, will find what they need in the vastness of the internet.

To the newly diagnosed I would recommend that you educate yourself and learn all you can about how to manage multiple sclerosis through reputable sources. Reach out to others who are living with the reality of MS and share your experiences. With the proliferation of websites and blogs on this topic, you are sure to find someone you can relate to. You are not alone.

Still…just once I’d like to be able to say, “MS? No thank you. Not today.”

More from Mandy on MultipleSclerosisCentral.com

I feel a groundswell coming on. Two recent blog posts have taken on the subject of the under-insured with chronic illness and have managed to provoke powerful images.

Jake Crest, writing at BetweenTheBlogs.com, lays out the financial facts of one couple’s (our own) health care conundrum in his post, “The Most Important Political Issue”. With a diagnosis of multiple sclerosis, no access to group coverage, spiraling costs of individual health insurance policies with high deductibles and expensive MS medications, we can honestly claim a “crisis”. Millions of families are caught in this cycle and are rapidly spinning out of control.

Lisa Emrich, blogging at BrassAndIvory.blogspot.com in her post, “The Value of Money or the Value of Health - What Do You See?” has posted photographs of $7,000.00 in cash and $7,000.00 worth of MS medication. When you read the details of her story and view the images, you can’t help but be moved.

When you hear us talking about the “health care crisis”, we are not speaking of nickels and dimes. We are talking about making life-altering decisions regarding our health based on finances. These two posts have put dollar signs and faces together in a way that brings the issue home.

Let’s work together to generate some attention to these two articles and the real people behind them. Let’s face it, our blogs are read in large part by other people who live with chronic illness and already know the facts all to well.

Let’s take it to the streets, so to speak. Put your story on your own blog, and add another face with financial facts. Add these story links to your own site. Comment on other blogs and link to these posts. Email people you know who would otherwise not read these articles and include the links. Write members of congress. Do all you can to put this issue front and center. We need to work together in an effort to educate others. With an election approaching we must make this a top priority.

What the answer is…I don’t know. Reading other blogs and blog comments, I haven’t come across anyone who does have the answer. That’s exactly why we need to get more people involved. There’s the issue of the 47 million Americans who are un-insured. Add to that the under-insured and those totally or partially disabled by chronic conditions. Stir in the high cost of prescription drugs. Then there’s the problem of group health insurance being directly tied to employment. COBRA and HIPPA buy you time, but eventually you are on your own. Put it all together and you have a bona fide HEALTH CARE CRISIS.

Let the movement begin.

BetweenTheBlogs.com: “The Most Important Political Issue”
BrassAndIvory.blogspot.com: “The Value of Money or the Value of Health - What Do You See?“

A while back, I did a post titled, “MS and That’s Not All”. I was talking about having MS as well as another major condition, but there’s more to that story.

Since being diagnosed, I’ve had the usual MS-related conditions to contend with, but nothing else more than the common cold. Last July, when my right arm began to hurt, I didn’t realize I was heading down a long road which would be complicated by my MS. I’ll never know for certain, but it seems that MS, in its sneaky way, caused the situation to be more difficult to correct.

Part of my troubles can be attributed to the difficulties in getting in to see a specialist and receive a diagnosis in a timely manner. In addition to that, my right arm is severely effected by my MS exacerbations. Over the past several years it has become markedly weaker, even between bouts. During an exacerbation, I cannot lift my arms over my head (to blow dry my hair, for instance) for any length of time and a two-pound weight is more than I can lift.

That extreme muscle weakness has contributed to a prolonged rehabilitation and physical therapy for what was finally diagnosed as chronic bursitis, tendinitis, and arthritis, which resulted in “frozen shoulder”. Three weeks post surgery I’m told that it may take several more months to regain the full use of that shoulder and arm — if ever.

The lesson I take away from all this is that I must be ever vigilant with exercising whenever I am able. Those of us with chronic conditions such as MS must do everything in our power to remain healthy in every way that is within our control. A balanced diet and exercise are of the utmost importance in our fight to maintain good quality of life.

Okay, everybody now: One, Two, Three…Stretch. One, Two, Three…Stretch!

More from Mandy at Health Central.com’s Multiple Sclerosis site.

“Life Interrupted, It’s Not All about Me“ by multiple sclerosis sufferer Chris Tatevosian, promises to provide insight into the world of one man with MS.

I have not yet read the book, but you can follow the link below to read the book review.

Life Interrupted Book Review

If you decide to give it a read yourself, Chris asks that you purchase it through this link and Amazon.com will donate a percentage of the purchase price to Chris’s organization, MSworld.org.

HealthCentral.com’s Multiple Sclerosis Site has been updated with a brand new look and feel. Now it’s easier than ever to keep up with the latest news and information about MS. And keep an eye out for more improvements in the months to come.

Click on over and connect with HealthCentral’s MS community. Register to create your own Share Posts, leave comments, suggest topics and choose email newsletters. Read what patients, doctors and other interested parties are saying.

Take a moment to subscribe to my Share Posts — then sit back, relax and let your inbox do the work. I’m very excited to be part of this wonderful group and look forward to your participation. See you there!

Read Mandy’s Posts:

Strength in Numbers
Keep the “Hustle and Bustle” in Perspective
MS Lives Here
Diagnosis: Now What?
Health Care Crisis is All Too Real
Hmmm…..I DO Look Pretty Good!
Health Care Crisis Gets Personal
A Third Party in Our Marriage
Health Care on the Front Lines
There’s Something I Need to Tell You…

Please take a moment to visit the Blog Carnival of MS Bloggers at the link below.

Brass and Ivory MS Blog Carnival

There you will be able to read posts from the MS blogger community in one convenient location — come on over and find out what others are saying! Don’t forget to read “My Spouse, My Caregiver” from MS Maze.

Many thanks to Lisa Emrich of BrassandIvory.blogspot.com for hosting the carnival.

You can read more from Mandy at HealthCentral.com.