My Invisible Life

A personal account about living with multiple sclerosis (MS).


Work/Life Balance – Part 2

by on April 15, 2014 0 Comments
Work/Life Balance – Part 2

In my last blog, I promised I would share some of the tips I learned from my visit to the counseling service, Encompass, provided by my employer, Spectrum Health. I’ve also done quite a bit of reading on the work/life balance topic and tried some of my own strategies. Below are six of the ideas that best fit my lifestyle, and I hope they help you, too.

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Work/Life Balance

by on April 3, 2014 0 Comments
Work/Life Balance

People who know me, especially those who work with me, know that I am forever on a quest for a thing called work/life balance. Recently, I felt that my balance was so far off that I turned myself into the career counseling service at Spectrum Health to see if they could do anything for me.

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I’m So Tired I Can’t Remember If I’ve Written About Fatigue Before

by on May 15, 2013 1 Comment

Fatigue is one of the most insidious symptoms of MS. It’s not as obvious as muscle incoordination or unsteady gait; it’s not as embarrassing as slurred speech or tremor; and it’s not as problematic as vision loss. It won’t necessarily put you in a wheelchair or require you to carry “barf bags” for uncontrollable vertigo with nausea (so not my favorite!). Instead, fatigue creeps into your life like a shadow you just didn’t notice you had before. It’s suddenly always with you. A new best friend you never wanted. A heavy backpack you can’t take off. It isn’t just that…

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On Gratitude

by on November 21, 2012 0 Comments

It’s Thanksgiving Eve, and as I think of all that I have to be thankful for, I ask myself if I’m one of those people that can say I’m thankful for my disease. Can I reflect on the past couple of years and say I have a newfound and deeper appreciation for life because of the lessons that living with MS has taught me? Can I say that I wouldn’t trade MS because of the wisdom it’s given me? Well, frankly, no. I like to think I’m a good person, but I’m not quite that good. If given the choice,…

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Coming Full Circle

by on June 13, 2012 0 Comments

I haven’t posted a blog update since December 1 of last year. There were a number of factors that contributed to my absence, but the main reason was that MS has really taken its toll on me this calendar year. I took my last dose of Tysabri in September 2011 and have been off MS meds since. My first relapse began on January 31, my daughter’s birthday. My symptoms included serious vertigo and painful electrical shocks throughout my body, leading to uncontrolled eye and muscle movements. The vertigo was bad enough to make me very sick and I rapidly lost…

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Being a Professional Patient

by on December 1, 2011 0 Comments

The online community of MS friends I have built has been one of the best resources I have found since being diagnosed. One of my friends, Roger, shared a medication spreadsheet with me that has been invaluable – particularly with a challenged memory and a plethora of doctor and emergency room visits. I’ve tweaked it to make it work for me, and I’d like to share it with you. At the top of my spreadsheet, I’ve listed my current diagnoses and the approximate date of diagnosis. I’ve included the physician currently treating the condition, the practice phone number and the…

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The Day I Cried

by on November 23, 2011 0 Comments

I’m not sure if this is normal, but I never really cried about my MS diagnosis until recently. I can recall a few times when I got tears in my eyes – when the primary care doctor first told me he saw white matter spots on my MRI, when the neurologist told me he believed it was MS, and when I told certain friends and family members of the diagnosis. But I never broke down and cried. I was too busy trying to absorb information, trying to deal with new medication regimens and side effects, trying to deal with bizarre…

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Exercise and MS

by on November 21, 2011 0 Comments

Like many women, I have struggled with weight and body image since I was a teenager. I reached my highest weight after my second (yes, second) divorce and decided enough was enough. I began a simple program of portion control and exercise with a primary focus on walking. I followed this program for many months and slowly but surely, the weight came off. All told, I lost 51 pounds in 62 weeks. And it was during those 62 weeks that my initial MS exacerbation and diagnosis occurred. When I had my first relapse between MS medications #2 and #3, however,…

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The MS Medication Treadmill

by on November 9, 2011 0 Comments

For 13 months, I had been taking an MS treatment called Tysabri. On the manufacturer’s website, below the pictures of the happy, smiling people who love this treatment is this special statement: “Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability called progressive multifocal leukoencephalopathy (PML). There is no known treatment, prevention or cure for PML.” I read this statement before starting the treatment and determined that I did not have any particular risk factors that put me above the general 1 in 1,000 average. And given that I’d been through the…

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When You Don’t Have Anything Nice to Say, Say It With Jewelry

by on October 31, 2011 0 Comments
When You Don’t Have Anything Nice to Say, Say It With Jewelry

There are some days when I get tired of MS and my other ailments. I get tired of self-injections or infusions (depending on which MS treatment I’m on at any given time.) I get tired of counting out the pills I’m supposed to take to control nerve pain, musculoskeletal pain, fatigue, headaches, thyroid function, depression and whatever else is cured by the contents of my old lady pill container. I get tired of making doctors’ appointments or using my handicap parking sticker to save my “spoons.” I get tired of MS intruding into my life as an uninvited guest who…

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