2016 Year of The Patient
MY “ROLLER COASTER RIDE” WITH LUPUS
By: Sophie Vlassis
Both of my parents emigrated from Greece. They had an arranged marriage, and had never even met until the week before their marriage. Only Greek was spoken in our home. My father operated a shoe repair shop at the former Younkers Building in downtown Des Moines, and my mother suffered from depression due to the loss of several siblings during World War II. Since my mother was hospitalized a great deal of her life, my father raised my older sister, Agatha, and me for 7 years. My two best friends were my father and my sister. My father was always giving me advice on how to make myself a better person, and tips on how to survive. My sister was manageable; however, I was a “Holy terror”. My father used to tell his friends that he thought “Sophie was born with a built-in engine, and an 'off button' that was broken, and could not be repaired”. I was into everything. I always wanted to be a cowgirl, so he bought me a cowgirl outfit. I would put on my cowgirl outfit, and take my imaginary horse...and away I would go...”galloping” around the neighborhood! I was non-stoppable!
I participated in every group, or cause, that was of interest to me, whether it be at school, for a non-profit, organization, a church activity, a political campaign or something in the community. I loved being involved.
Neither of my parents drove, and I preferred to walk, rather than ride the bus. I walked several miles a day---enjoying the sun! Little did I know that it would soon become my worst enemy! While I attended Drake University, I would walk 1-1/2 miles every day to campus; then, when classes were over, I would walk downtown and wait on customers at my father's shoe repair shop. During my summer breaks, I worked at the State Capitol Building, and would sometimes walk up the steps to the Dome before starting my work day.
My friends were a very important part of my life, and approximately 20 of us would meet every Friday evening, and go “out on the town”. Little did I realize what an important part they would play in my life after my diagnosis.
The summer of 1964, I was “on top of the World”!!! I had just “survived” my first year of teaching at a junior high school, had enrolled in graduate school at Drake University, and I had plans to marry someone the following summer. Even though my life style was a little wild, and my eating and sleeping habits were not the best, my health was good, except for a skin disease, called dermatitis herpetiformis (DH) that first erupted in December of 1962.. I was diagnosed quickly, and referred to the Mayo Clinic, where I was given a sulfa drug to which ti I reacted , so they prescribed a drug called avlosulfone. Because the drug had some severe side effects, I was advised to have lab tests every month---which I did faithfully. My lab test results were always normal.
One day in June, of 1964, I was outside for 4 hours, painting the picnic table. When I finally finished painting the table, it looked great, but I felt miserable. When I went inside, every single joint in my body ached and was swollen, I felt weak and fatigued, I had no appetite, and I had a fever. Within an hour, a very prominent weird-shaped red rash appeared on my face. I continued to feel the same way, but didn't call my dermatologist, because I knew I would be seeing him soon. I finally went for my routine lab work, and within 24 hours, my dermatologist personally called me, and said that my lab test results were “beserk”, and I needed to report to his office immediately so that the tests could be performed again. Fortunately he had just returned from a seminar on systemic lupus erythematosus, so he had learned something about the disease and its symptoms. When I walked into his office, and he saw my rash, and then looked again at the results of my blood tests, he immediately suspected lupus, and tested me for it. The test result was positive. Since tests to determine luipus were not very reliable at that time, and lupus was virtually unheard of in Des Moines, he referred me again to the Mayo Clinic where the diagnosis was confirmed. At first the physicians thought that it was a drug-induced lupus, caused by the medication I was taking for my dermatitis herpetiformus, so they immediately stopped the drug. That multiplied my problems, because not only were the lupus tests still positive after being taken off the drug, but I had a severe flare-up of the dermatitis herpetiformus, causing an outbreak of water blisters over much of my body. Within a week, they found another drug for me to take to control the DH., and prescribed prednisone for the SLE---a drug I have taken ever since I was first diagnosed with SLE....nearly 52 years. I was cautioned about the side effects of prednisone, but I had no other choice. I was told to cancel my marital plans, forget about graduate school, and think carefully about continuing to teach, because I probably had only 4 more years to live!!! My world had fallen apart.I was so distraught that I asked to see a psychiatrist---a very sweet and kind gentleman who helped me sort through ,and solve, my problems. It was at that time that I made the most improtant decision of my life. I had 2 choices: should I feel sorry for myself, and make others around me miserable, or should I set my priorities, and make the most of what time I still had on this earth? My plans for graduate school and my wedding plans went “out the window”, and I decided to pursue my career. I returned to Des Moines with little hope of what would be in store for me in the future. I turned to my father for advice....and he said “Sophie, it is now time for you to “pick up the pieces”, “roll with the punches” and “never stop fighting”. My sister and friends were waiting for me at the airport when I arrived home from the hospital...and they all helped me turn my life around.
A bad day for me is having slept 10 hours, and still feeling fatigued, having to roll out of bed, and practically crawl on the floor because my back and legs “don't operate” My joints are swollen, sore and red that I can't even turn the door knob.. As I start to walk across the floor, my peripheral neuropathy flares up, sending what feels like electrical shocks in my feet. As I remove a bottle of Ensure from the refrigerator, the Raynauds kicks in, causing my fingers to turn red, white and blue , just like the American flag! The circulation is momentarily gone, and I have no feeling in the tips of my fingers. When I bend over to pick up something from the floor, here comes the pleurisy, sending sharp jabs in my ribs. Since my esophagus is “shot”, and my epiglotus does not always function normally, when I take my pills, they get stuck in my throat, and I start to choke. My vocal chords have buoyed, so it is difficult for my husband to hear me call for him. We have a communications system, but it never seems to be in the right room at the right time. The doughnut and the fudge that I ate earlier in the day are starting to rebel , and the acid reflux kicks in. My beloved husband brings me an empty Cool Whip container, so that I can “upchuck”. If I overdo, my heart palpitations start, along with the heavy breathing from my lungs. On 3 occasions I have blacked out, and 911 has had to be called. In the early evening, I develop a fever, and I fell like I am going to burn up. The bones in my left wrist have started to collapse, and I can feel them moving around as I try to eat my dinner. Its time for me to put on that wrist brace that the physician ordered. I start to reach for something in the cupboard, and the ball in my shoulder pops out of place, because it doesn't have a rotator cuff. All I want to do is sleep...sleep...sleep!!!! I draw a face on my calendar with an unhappy face! :-(
When I've had a pain-free night, it is like a “breath of fresh air”. I feel like conquering the World---but I know better. It's so relaxing to sit on the edge of the bed, in the morning, and be able to stretch (without pain) before getting out of bed. I look in the mirror and tell myself, “This is going to be a great day”. The minute I walk into the dining room, Tom knows that I'm feeling good. Within seconds, a huge smile appears on his face. smile emoticon I desperately try to pace myself so that I won't encounter repercussions at the end of the day. I can walk on the floor barefoot and wear shoes I couldn't fit into the day before, because my feet were so swollen. My wedding bands easily slip on and off my finger, because my joints are back to normal. Getting dressed takes half the time, compared to the time it takes to get dressed on my bad days. The phone rings, and Tom answers the telephone. I hear him say, “Yes...today I think she feels like having a conversation." When he asks me if I'd like to go out for a while, I immediately say “yes”. He is aware of my “wish list”, so he asks me to look at my list, and decide what I want to do. He takes me to lunch, and then wheels me around in my rollator at Younkers. I'm still feeling great. When I return home, I take a nap. Still feeling “on top of the World”, I decide to climb on my scooter and dust the family room floor with my Swiffer mop. Then its time to take another nap. My housework was fun and pain free. Now I look forward to trying out that new recipe for my husband, who has every reason to complain about my lousy cooking, but never does. I can clutch on to a cold can of soda, and swallow my pills with out choking on them. The food gradually goes down without incident. The meal wasn't so bad after all. My husband can hear and understand me when I talk to him. My lungs feel clear, and my breathing is unlabored. Tom and I laugh as we exchange stories about the mischievious things we did as children. It has been a great day. I draw a happy face on my calendar. I thank the Lord for making another good day possible.
When I was first diagnosed, my future seemed very dismal. I pictured myself as living alone for the rest of my life, with constant life-long medical problems, and not being able to enjoy the things that I once treasured. However, as the years passed, I realized that I was the one who was responsible for many of my flare-ups, because I didn't follow the doctors' orders. I started to pace myself, and finally learned the meaning of the word “NO”.
MY LIFE HAS BEEN LIKE A ROLLER COASTER. I've had my ups and my downs....from being given the last rites 3 times, to being placed in containers of ice to break 105 degree fevers, to having had 54 surgical procedures, many a result of long-term steroid use. I was on crutches for 2-1/2 years. I have lost some of my vision, because I was too sick to visit my eye doctor to have the peripheral vision test to see if the Plaquenil I was taking had affected my eyesight. The lupus has attacked my heart (having suffered a heart attack in 2001), my kidneys, lungs, vascular system, nervous system, skin, joints, esophagus, muscles (muscle atrophy), back and other parts of my body - too numerous to list.
THE GOOD NEWS:
I am fortunate to have had physicians who have been able to diagnose me early enough so that my condition could be controlled. The biggest influence in my life is my dearly beloved husband, Tom, who treats me like a queen. He proposed to me knowing that I had severe problems with lupus, and still was willing to take the chance. On May 1, 1976 we literally had a “Big Fat Greek Wedding” with more than 1,000 of our friends as witnesses. It was the first time in 20 years that 2 local Greeks had married one another. The news of our engagement snapped my mother out of her depression, so she was well enough to help plan, and attend our wedding. We have traveled to every state in the Union, and abroad several times. Since we have no children, we have hosted 3 foreign students in our home for their entire senior year. Many foreign dignitaries have been entertained in our home, and well-fed by the expertise culinary skills of my husband, Tom. For several years, Santa Tom and Elf Sophie would visit at least 20 homes, and some hospitals, each Christmas Eve, with Santa Tom delivering a magical candy cane to each child. I'll never forget the time the snow had melted on Christmas Eve, and when we returned home, and I removed my Elf shoes, the green dye had soaked through to my feet. It took 2 weeks to get rid of the green color on my feet.
The active fun years are now gone, but the memories remain. I can no longer walk on my own; however, I used my rollator to get around. Since I can no longer drive, due to my loss of vision, Tom runs all the errands in the household, and does most of the chores. When I am feeling well, I try to share some of the household responsibilities. I can see the look on his face when I am in deep pain. He is my ROCK!!! My disability has not prevented us from staying involved with the community. We have contributed clothing and other items to the homeless, and each year “adopt” from 2-4 disadvantaged children by purchasing each of the 3 gifts on their wish lists. In 2006, we were the Des Moines Register's “Sweetheart Couple” representing the west side of Des Moines; in 2010 we were proclaimed the “Citizens of the Year” by the Des Moines Neighbors, and also received the “Beaverdale Brick” from the Beaverdale Neighborhood Association, and in late 2015, the Des Moines City Council voted to designate a lovely piece of land the “Tom and Sophie Vlassis Greenway. The dedication will take place later on this year. We go fro, day to day, and give our thanks at the end of each day for the strength the Lord has given us. Yes...we have truly been blessed.
What first turned out to be a dismal, has ended up being, a rosy ouIlook in my life. I proved to myself that I could pursue my career, and managed to make it last 30 years. I still keep in contact with my former students, and one of my goals in life is to re-establish contact with as many as possible via Facebook. To date, I have reconnected with more than 500 of them. I have either found them, or they have found me. Another goal I established was to volunteer for the Lupus Foundation, Iowa Chapter, which I did for many years, first co-founding the Des Moines Area Lupus Support Group, and serving the Board in many capacities, including several terms as President. I have always been passionate about the effort to find a cure for lupus. When I was in better health, I traveled around the State of Iowa and Nebraska giving talks about lupus.
I tell people that I would rather have lupus than some of the other diseases, because there are good and bad days with lupus. There are some diseases in which the victims never have good days. Each day I draw a face on my calendar---depending on the type of day I've had. Happy faces for good days, unhappy faces for bad days, and mouths straight across for “so-so” days. At the end of the month I look at the faces. Some months are better than others, but my calendar reminds me that not all days are bad days.
It's nearly 52 years later, but I still recall my father's advice---I'm still “picking up pieces” “rolling with the punches”, and I haven't stopped “fighting”!
Over the last 52 years Sophie has been honored with several awards, including: The Lupus Foundation of America Lifetime Achievement Award in 2005, LFA - Iowa Volunteer Award, 2nd Runner-Up for Iowa "Teacher of the Year”; Rotary Middle School Teacher of the Year; the Leading the Way Award from KCCI TV, the Northwest Bank Educational Excellence Award, Who's Who of American Teachers, Outstanding Consultant of the year for Junior Achievement 1996, Ursa Major Award for Alpha Phi Sorority, The Lower Beaver Neighborhood Association Sophie Vlassis Volunteer of the Year Award in 2006, and the Forest Avenue Library Outstanding Woman Award. I believe that it is safe to say that despite lupus Sophie has dedicated her life to others. What an outstanding legacy!