Living with Lupus — How Lupus Changed Our Lives
Our Story of How Lupus Changed Our Lives
Our story begins in early May 2010 when something changed in our then 15-year-old son Tanner. He was usually a very active child, but suddenly he became very lethargic and lacked the energy and ambition to do so many things he normally loved to do. We watched him closely with concern, but thought that maybe he was not getting enough sleep and perhaps treatment for his sleep disorder needed to be re-evaluated.
When he started to complain of intermittent chest pain, we were not sure what to think anymore. Was this something new, or perhaps just a pulled muscle? His softball season had just begun, so we continued to watch him closely to try and figure out what was going on.
Frightening Symptoms
When these symptoms continued, getting worse and more frequent, we could no longer sit back. On one occasion he looked very distressed, and I took him in to see the Doctor immediately. They did some blood work as well as an EKG, both with abnormal findings. We were sent to our clinic the following day but had to see a different pediatrician because our regular pediatrician was not in. They did numerous blood tests including another EKG, all with abnormal results. We remained at the clinic for more than 4 hours trying to figure out what was causing these abnormal test results. While at the clinic Tanner began to experience some new and frightening symptoms, triggering many more tests resulting in more abnormal and alarming findings. With these results specialists were contacted immediately, and a plan was set for us to follow for the next three weeks to see if the problem would resolve itself. The outward symptoms did disappear, but we were still left with no definitive answer nor explanation for his issues, and Tanner was still not himself. We had an appointment for a routine physical exam set up with our regular pediatrician in less than a week, so we decided to discuss this with her.
At the appointment, one of the first things she asked was if we were happy with how the recent events were handled. We told her that we were not satisfied, and something was still not right. She agreed and ordered more lab tests immediately. These and subsequent tests came back worse than ever, spurring renewed, and urgent, consultations with specialty groups at the University of Minnesota who wanted to see Tanner as soon as possible. We were scheduled to be seen at the U of M in about 10 days.
A World of Change
About a week before our appointment, we received a call from the specialty clinic at the U of M that they had a cancellation and they would like to see Tanner the following day because he was on a high priority list. That was terrifying! At this appointment they told me that they had no doubt as to what was going on, Tanner has Systemic Lupus Erythematosus (SLE), a devastating Auto-Immune disease in which your immune system gets confused and attacks your own healthy organs and tissue, for which there is no cure.
Our whole world changed in an instant.
Tanner was immediately scheduled for a day of nonstop tests checking out every major organ system. That day it was determined that Tanner should begin treatment for SLE immediately, before the medical evaluation was even complete because the disease was VERY active.
After nearly seven weeks, we finally had an answer, an answer that only raised more questions.
Almost immediately we began searching for more information about this devastating disease that was going to be playing a huge role in our family for the rest of our lives. We found the search very disappointing and frustrating. We were not only disappointed with the lack of awareness for this disease, but frustrated at the lack of information available concerning children and adolescents with Lupus.
When sharing Tanner's diagnosis with others, not only was our disappointment and frustration validated, but it became evident that what little awareness there was of this disease was filled with many misconceptions about the disease and who it affects. Compared to many people Tanner's Lupus diagnosis was relatively quick, but we feel that it could have been quicker if there was better awareness of this disease. The first set of doctors we saw had quickly dismissed Lupus despite the reoccurring lab tests indicating it as a possibility. They just didn't know what it could be and we felt that they were baffled and taking stabs in the dark at senseless things. We are forever grateful to our Pediatrician, Dr. Kuper at Monticello Clinic for her determination to get answers.
Taking Action
Now, we have turned our frustration into determination to make a difference, to raise awareness, educate others as well as raise funds to support research and support services.
In early 2011 we began the process of forming our own Non-Profit organization, Living With Lupus & Fighting Together. When we shared our ideas with family and friends, the ideas grew into something we could never have imagined. We began to plan a Family Fun Day that was held in May of 2011 to raise funds for the Lupus Foundation of Minnesota. The response from our community was nothing short of amazing. Despite cold and rainy weather we raised nearly $6,000 and donated it to the Lupus Foundation of Minnesota, to be used specifically for services benefiting children and families. Our efforts and determination were recognized and we were asked to serve as the Ambassadors for the Lupus Foundation of Minnesota in 2011, an honor we gladly accepted. During our time as Ambassadors we traveled to events around Minnesota and participated in the Cory Cove Lupus On-Air Marathon, gladly doing anything we could to help raise awareness and funds to support research and client services.
Since The Diagnosis
Since Tanner's diagnosis there have been many challenges. Living with Lupus, or any type of chronic disease is difficult for any individual, but the impact on the entire family is often overlooked and not addressed.
Our family is in a unique situation because Tanner has struggled with many disabilities from an early age. However, none of them have been potentially life threatening until his Lupus diagnosis. Some of the things that others have to deal with as a result of a Lupus diagnosis- taking medications, lots of medical testing and lab work, and an altered appearance due to side effects of the medications were not a big obstacle. Tanner already had to deal with these things. But emotionally it has been taxing for everyone in the family.
Our other children have experienced many emotions. They have experienced the fear of losing a sibling or possibly being diagnosed with Lupus themselves one day. Disappointment when plans are cut short or altered if Tanner is not feeling well or we have to rush to the doctor's office. They also have hurt feelings at times when we may not be able to take any more time off of work since a lot of our time is used up with Tanner's medical appointments. It can also be difficult for them to accept how much of Clayton's and my time is spent on keeping Tanner healthy, even though they are aware and understand that it is necessary. Then, there is the guilt for even having these emotions.
As parents, it was not only hard for us to accept what this meant for Tanner's future, but it is very stressful to try and maintain a balance for our family that looks out for everyone's physical and mental well-being, often neglecting our own. As parents we are not only responsible for educating our families, but teachers, school nurses, coaches or anyone that has frequent contact with Tanner. In addition, Tanner is intellectually disabled so finding the words to describe how he is feeling, what type of pain he is experiencing, or how a medication makes him feel is not always easy. This makes our observations of him extremely important in determining how he is really doing, and also places some of that duty in the hands of his siblings to tell us if they notice anything out of the ordinary. With Tanner's immune system suppressed to help control his Lupus, we worry when our other children become ill, or there is an outbreak at school that he may become ill and we may not notice the subtle changes that may indicate he is coming down with something until he is very ill.
Even though Tanner's understanding of the disease process is limited, emotionally it is still hard for him. Because sun exposure for those living with Lupus can cause the disease to "flare", he deals with the annoyance of not being able to just run outside and play like other children without putting on sunscreen first, having to go to the school nurse to reapply his sunscreen before going outside with his classmates, and frequent trips to the nurse's office if he experiences dizziness, or a racing heart. Tanner is also involved in Special Olympics and loves to participate, but it is extremely exhausting for him and at times he may need to sit out more, especially when it is taking place outdoors. Emotionally that is not always easy for him.
Beyond the emotions, it has also meant much more careful planning and consideration when taking trips, attending the children's sporting activities or special outings. Minimizing sun exposure when you are a family that is very active in sports and other outdoor activities is difficult. It requires special planning, lots of sunscreen, special clothing, pop up tents and special chairs, or sitting in areas that are not necessarily good for watching your child's activity or event. We also need to take into account that beyond the risk of a flare with sun exposure, it is also extremely exhausting for Tanner and he wears out quickly.
Moving Forward
In 2012 we held our second annual Family Fun Day to raise funds for our own established Non-Profit, Living With Lupus & Fighting Together. As we begin 2013 plans are already well underway for our Third Annual Family Fun Day to once again be held at Lake Side Park in Big Lake, Minnesota on May 18th, 2013. With the proceeds we plan to offer financial aid and support to families dealing with a Lupus diagnosis, and develop programs so that children diagnosed with Lupus can connect with and do ordinary things with others that understand their limitations.
We believe raising awareness is critical for making advances in the management, treatment and search for a cure for Lupus. Simply put, the more awareness there is the more funds that can be raised to support the research and fund programs and services.
Our hopes are that by sharing our story with you, you will help us to achieve our goals and bring about more awareness of this devastating Auto-Immune disease.
Living With Lupus? Loved One Living With Lupus? How Has Your Life Been Impacted by Lupus? Everyone's Lupus Story is Unique, Share Yours and Help Raise Awareness
You've read our unique Lupus story, and no doubt your Lupus story is unique as well. Share your Lupus story here and help raise Lupus awareness!
Read What Others Living with Lupus Have Shared About Their Unique Lupus Story
Click below to see contributions from other visitors to this page...
I have been diagnosed too, I feel like I am broken. Life has really changed.
I have always been a sunworshiper, been very active in motorcyle riding, quad riding, swimming, hiking, sking. Spending time with family and friends. I...
Living with Lupus: the invisble disease.
My sister and I were both diagnosed at age 15. She was diagnosed May of 2011 and I was diagnosed April of 2012. My dad also has it, and he was diagnosed...
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