Sunday, May 29, 2016

What we fight for

In a time when each month has several "Awareness" labels, it's not easy to get awareness. We are all affected by something whether it is our own struggle or a loved ones. To be honest I really hate "awareness" months. When your family is given a diagnosis you are going to live with awareness for the rest of your life. For my parents and friends with cancer, remission may have been attained but I am well aware of the emotions tied to their diagnosis and struggles. Maybe it's just me but awareness almost seems as if its a competition. Who's walk will have the highest attendance? Who's the biggest fundraiser? Yes, awareness is important but why do I have to walk or raise $100 for a T-Shirt? Why do I have to be rewarded?  Why don't we just help each other out?  What if we could just join together and celebrate and encourage those who are struggling with Cancer, Diabetes, Autism, MS, Lupus, Heart Disease, Alzheimers, and we all know this list can go on for pages.  Just share our stories and educate those who do not know their lives too are being affected. So many people are struggling, families are devastated by medical bills, hearts are broken from those who's fight ended. But what I think gets lost in these "awareness" months are the stories. Why these people need celebration and not just another walk. They need to know they're not alone, their lives are not a burden, that if today they got out of bed and made it to the bathroom alone or made eye contact their lives are Facebook worthy.
A quick note about walks and awareness events. They're not all bad. I love being able to support friends and families and seeing a community come together to support a family. My issue rests more with "corporate" events. We have been apart of one for diabetes in Fort Wayne and the walk raises money but offers no support for the families in this area. Also I thinks it's sad that many patients can't participate in a typical walk.  

So in honor of Lupus Awarness month. I am going to educate you a little bit about Lupus while celebrating two sisters with Lupus.

My sister, Brandi, and I.

She was 13 and I was 15 at diagnosis.  Most people are diagnosed in their childbearing years. Siblings rarely are diagnosed. But hey, we're not normal.  Our Lupus started out with the same basic symptoms. A rash across our face. The butterfly rash ~ looks like you've been in the sun. Anemia. Fever. Hair loss. Mouth and nasal sores. Fatigue. Joint Pain. Those are just a few of the 11 criteria for diagnosing Lupus. (Unfortunately there is no basic test for Lupus. A Lupus diagnosis is based on several blood tests along with meeting at least 4 of  the 11 criteria symptoms.) I didn't even show positive for one of the major blood tests used in diagnosis.  So I was told I was borderline. Later to be told by a rheumatologist (a doctor who specializes in Lupus) that you can't have borderline Lupus, it's like being pregnant either you are or you aren't. But Lupus is not just those 11 criteria symptoms. It can be discoid (skin) or systemic (entire body).  In my sister it manifested in her thyroid, lungs, kidneys, and liver. My Lupus manifests as vasculitis in my skin and colon, lungs, kidney, central nervous system, and severe photosensitivity. I now have the pleasure of embarrassing my children by carrying an umbrella on a beautiful sunny day and wearing a hat wherever I go.

When it comes to treating Lupus treatment plans can be just as varied as the manifestations.  Sadly there are very few Lupus specific treatments. Along with  a lack of treatments there are few doctors who treat Lupus. This has changed over the years. Brandi's Lupus battle and mine are an example of how Lupus can be treated. At her diagnosis she was given five years to live, told to stay out of the sun, and each hospital stay was used to get her symptoms under control, not fight the Lupus. When I was diagnosed 8 years later, I was given Plaquanil (a drug used to fight Malaria) an anti-inflammatory medication that I will need to take the rest of my life, told to stay out of the sun, and have blood work every 3 months to monitor the Lupus and its affects on my organs.

Five years. 

That was all our family was given with Brandi. We lost her and her unborn baby girl Krystina. Six months into her pregnancy her body was taken over by infection after a bought of bronchitis, her kidneys and liver too damaged.There would be no doctors educated in watching for organ involvement, no prednisone to slow kidney disease, no chemotherapy to stop the Lupus from attacking her body and taking her life. Even though she fought with all she had, she had no fighting chance. She was 18. Ten years before the average patient is even diagnosed.


One thing I was taught through her death it was to fight. Give my life a fighting chance until my last breath, fight for patients to receive a diagnosis, fight for their voices to be heard.

Because of Lupus complications many like my sister have lost their fight. Many like me suffer every day never knowing when we wake if our bodies will cooperate. Families and friends watch them suffer knowing they are helpless and nothing in this life will bring complete healing, This is why we have awareness we want to have our voices heard.  We want to see less die from complications. We want to know there will be a break from pain and fatigue.

I would really love to sit outside and feel the sun...

Okay. I really tried to be positive but living with Lupus or any illness, or watching our kids struggle with special needs is sad. And hard work. And sometimes lonely. But there are good moments and that is what we fight for.