Lawrence author has full life despite having multiple sclerosis

Lawrence author Vicki Julian has written an article about what it's been like to live with multiple sclerosis over the past two decades. She says she is still able to have a full life despite having the disease.

The lowdown on MS

Multiple sclerosis is a neurological, autoimmune disease of the central nervous system that affects approximately 2.3 million people worldwide. White T-cells attack the protective coating around the brain and spinal cord called the myelin sheath, leaving lesions or scar tissue.

Because nerve impulses cannot penetrate or are diverted around the damage, this can result in symptoms such as numbness, tingling, optic neuritis, cognitive issues, extreme fatigue and weakness.

— Vicki Julian

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Vicki Julian isn’t the only person in Lawrence who hasn’t been inhibited by a diagnosis of multiple sclerosis.

Ronda Miller, who was diagnosed with MS eight years ago, runs an in-home child care facility in Lawrence, works as a life coach for those who have lost someone to homicide, writes poetry and is a district president for the Kansas Authors Club.

“I truly believe I lead a more full life than most of my friends who don’t have MS,” said Miller, who noted that she initially contemplated suicide after her diagnosis. “I appreciate that my life span is likely shorter than average, so I live as fully as I’m able. I have to really focus to stay in the moment and not rush through my life doing too many nonessential things. Moments spent with my children, family and friends have become extra special.”

Emily Zung, of Lawrence, said that despite that the challenges that come from having MS, which she started developing as a college student in 1997, she is an active mother of two who works full time as an environmental engineer for the state of Kansas. She jokes that, as a mom with young children, she even sometimes finds the time to do chores around the house and yard.

“I am just more aware and try to not take things for granted,” she remarked. “MS has also provided me with a deeper appreciation of what I am able to do, an appreciation of the support my family and friends provide, and the humility to accept and ask for help when I need it. I realize there are times I just need to stop and take a break.”

— Giles Bruce, Journal-World reporter

Looking for story subjects

Vicki Julian is currently at work on her next book, which will focus on people facing end-of-life issues who have a belief in the afterlife. If you fit that description and are willing to be interviewed, email her at vickiljulian@gmail.com. For more information, visit her website at www.vickijulian.com.

Before my own diagnosis in 1996, shortly before my 46th birthday, I knew only three people who had multiple sclerosis. They were all severe cases and one was my nephew.

For eight years I had experienced numbness and tingling in my extremities which weren’t that problematic. But when my right hand went completely numb along with the bottom of my feet, the symptoms could no longer be ignored. It’s difficult to write when you can’t feel the pen, and the lack of sensory feedback caused me to take some pretty nasty falls. It was time to see a neurologist.

The process to obtain a diagnosis of MS was almost as difficult as the emotional impact of receiving confirmation. In my case, it required two MRIs, a lumbar puncture (spinal tap), and eventually a trip to the Mayo Clinic. The tap showed evidence of an autoimmune disease, but the brain scan showed no lesions on the protective myelin covering.

A second MRI of my cervical spine indicated a significant lesion. My neurologist suspected MS, although a single lesion can also be caused by trauma to a particular area. Since I couldn’t recall any such trauma, she prescribed steroids to reduce inflammation and gave me a choice of two different interferons, the only disease-modifying therapies available at that time. Since both were very expensive injections and had possible flu-like side effects, I had only to choose between an intramuscular shot once a week, or a subcutaneous one every other day. After watching a video of the intramuscular injection, my husband and I quickly settled on the second option.

After diagnosis, I had to find a way to tell my teenage sons and other close family members that I had MS. Although the disease is considered familial and not inherited, I worried incessentantly that my sons might also someday contract the disease. I also worried about my husband maybe having to someday become my caregiver since there is no cure and no reliable prognosis.

When I visited a nurse to receive injection training, it was disconcerting, to say the least, to stare at my thigh and think I was going to have to stick myself there. It wasn’t any more pleasant to think of the other injection sites that either I or my husband, who practiced giving injections with an orange, would have to alternate between: my other thigh, arms, abdomen and posterior. Fortunately, I only had flu-like symptoms with the first injection, but after three months, it was apparent my body could not tolerate this type of drug.

I began experiencing rapid breathing and occasional nausea, and had just begun to seek additional medical attention from a clinic. (I had been so healthy in past years that I didn’t have a regular physician). Before discovering the cause of these symptoms, extreme weakness and sudden uncontrolled vomiting caused me to be taken by ambulance from my corporate office in Kansas City to an area hospital. The resulting electrolyte imbalance caused a three-day stay and a continuous course of calcium and magnesium supplements to prevent future imbalances. I also had to see a rheumatologist to rule out lupus. At that point, my colleagues knew something was seriously wrong with me and I could no longer hide my suspected diagnosis. It also became my first opportunity to educate others on the disease.

Because there were no other disease modifying drugs for MS available, I went more than a year without medication to prevent or lessen exacerbations (attacks), and my disease progressed with some permanent damage in my left leg. Finally a new drug came on the market as a daily injection and my neurologist prescribed the treatment. She was still a bit uncertain of a positive diagnosis since I only had one lesion, so my husband and I decided to travel to the Mayo Clinic in Rochester, Minn. There, I received a definitive answer and confirmation that my treatment was optimum.

During this time, working with my husband’s insurance as secondary was a nightmare. The drug was more than several thousand dollars and the copay from my insurance was high. It took numerous phone calls and letters to finally work the bugs out of the system.

Looking back well beyond the years of minor numbness and tingling, things began to make sense. At 29, I had one episode where one quarter of my body went numb and I suspected a pinched nerve. I saw an orthopedist who could not find anything, and suggested I return if it didn’t go away in two to three weeks because “it could be a symptom of something more serious.” Fortunately, it went away, and the disease stayed dormant for some time.

From the beginning, I quickly learned there is a great deal of misinformation about MS. Although the library was my initial source in the days before the Internet, it didn’t take long to discover the incorrect information and many myths that still prevail today, even among those who have the disease. For that reason, I seek only reliable sources such as The National Multiple Sclerosis Society at www.nmss.org and my neurologist.

Much has changed in the last two decades. Because there are now many MS disease-modifying drugs on the market (ranging up to nearly $5,000 per month), you might not even suspect that someone has it, and research shows promise in trying to repair damage to the myelin sheath and to identify possible triggers for onset. I have also chosen to see a neurologist who is an MS specialist. He offers clinical trials in which I sometimes choose to participate.

Today, my goal is to educate others about this neurological disease because it can affect most anyone and at any age. As an MS peer advocate, I speak with others who are about to begin the same drug therapy I have taken for 16 years, which is also now available as a three-times-per-week dosage.

A diagnosis of MS is not the end of the world as I once thought. The disease must be respected, but it doesn’t mean that life can’t still be lived well. With flexibility, much can still be accomplished. I am happy to say that I am living proof.

Vicki Julian is an author of inspirational works including four books and four anthologies, journalist for The Humanitarian Examiner writing articles on the make-a-difference theme, faith blogger, Stephen Minister, and financial secretary for the Kansas Authors Club. Visit her website at www.vickijulian.com.