The Home T is committed to raising money for multiple sclerosis (MS) research at the National Multiple Sclerosis Society, but we also want to help raise awareness about the disease and how it impacts people.
This interview is part of an ongoing series where we talk to members of The Home T community that are impacted by multiple sclerosis. Today, we’re going to hear from Lyn.
We first met Lyn when she sent us an email saying she saw us on Shark Tank and really appreciates our donation to MS! She ordered an Alabama Home T and a My Y’all Is Authentic shirt for her daughter who lives in California and sometimes gets homesick. Lyn mentioned that she was diagnosed in 1985 and we asked her to share her story!
What state do you call home?
I am a lifelong resident of south Alabama. My home is Fairhope, on Mobile Bay, just north of the Gulf Coast.
When did you learn you had multiple sclerosis, and do you have relapsing remitting or progressive?
My first signs that something was not quite right came just after Christmas in 1984 when I suddenly had difficulty buttoning the tiny buttons of my two year-old daughter’s dress; cracking eggs seemed strangely unnatural; and I kept sticking my mouth with my fork when eating. I was not employed at this time and with no pain or any other symptoms of any kind, I hesitated to go to a doctor for these crazy sporadic issues, mainly because I had no idea what kind of doctor to see!
Then a few days later, as a volunteer at our art museum, I attempted to take notes on a new exhibit. Unfortunately, I could not read any of my notes and I became seriously concerned. I researched “neurological disorders” in a medical encyclopedia (this was pre-Internet of course!) and I read some really frightening things. After describing the weird things happening to me, my husband asked me to write my name and an illegible scribble resulted. He called a neurologist whose initial questions I could tell were concerning a possible stroke – a scary thought for a 31 year-old mom with two small children. As my entire right side became numb and uncontrollable, I was diagnosed with incurable relapsing remitting MS on January 13, 1985. Like a birth date or special anniversary, this date was then etched in my brain forever. I still remember it like it was yesterday.
How has it impacted your life the most?
MS is a tricky disease because it doesn’t present itself in any two people exactly the same way…nor is its course the same for all. I have had MS for over 30 years now and have experienced only half dozen or so memorable attacks since 1985. I thank God for this, as I have known many others not so fortunate. In 1998, I was first prescribed a “disease modifying” drug for my MS. I do believe the weekly injections of an interferon drug helped keep my MS under control and debilitating recurrences became farther and farther apart. In 2013 I was finally switched to a new two-per-day oral capsule which had none of the flu-like side effects I had suffered for the past 17 years! It seems to be working just fine … and with a severe needle phobia, I think this is the best!
With years between exacerbations (attacks), I have been blessed to live a normal life, although each attack leaves a significant “permanent souvenir.” My hands tingle constantly, I sometimes have severe nighttime leg cramps, I feel like I’m always wearing compression hose and my balance is a true concern now as I run into walls, trip easily, and can no longer wear heels! I don’t share my concerns with even those closest to me, but since I never know what might trigger another attack, when it might hit, or how severe the next one might be, I live in constant worry. I have had symptoms begin gradually over a couple of weeks as in my first attack, and also come on very suddenly while sitting at my desk at work. I have been forced to shorten a vacation with my husband as symptoms began while away from home, supposedly enjoying rest and relaxation! One never knows. We have a cross-country vacation planned soon to visit our daughter in California, in which we have already invested money in airfare and hotel reservations, and there’s that nagging thought again… “What if?” Standard treatment for MS attacks involves high dose steroids administered by IV, so the sooner this is begun after an exacerbation begins, the sooner recovery happens.
What has multiple sclerosis helped you learn about yourself?
My first question regarding my disease diagnosis – Why me? Since it affects significantly more people in cold climates, and it gets really HOT here! (MS is almost non-existent at the equator.)
Because my particular MS is far less debilitating than most, I have hesitated to become actively involved in local support groups… I do not look like anything is wrong with me and have never wanted to give anyone struggling with the unknown path of his or her disease false hope; but on the other hand, I could give the newly diagnosed hope of having a prognosis of mild disease course like mine. I am conflicted in what comfort I may be able to offer others. I feel uncomfortable in a room with wheel-chaired MSers, as I find myself questioning, “Why not me, Lord?” Then I give thanks.
I have learned that I am unbelievably blessed to have MS in the form I have and I thank God every day.
What’s one thing those that don’t have multiple sclerosis should know about it?
Most people with MS can still contribute 100% – or more. They deserve a chance, visibly disabled or not, to actively participate in whatever they choose. Perhaps in an effort to over-compensate for MS disability, many MSers go above and beyond what is expected of them…
Especially when there are no visible signs of disease, MSers are hesitant to disclose their diagnoses with coworkers or their bosses due to preconceived – and often incorrect – understandings of the disease. MSers are intelligent people who just happen to have contracted a disease of which there is no cure – yet…but they are really close.
What’s your favorite flavor of ice cream?
My favorite “ice cream” is actually lowfat frozen yogurt! My favorites are Publix brand Espresso Chip and Black Jack Cherry. Yumm!