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Rare Disease Day



Today is Rare Disease Day. There are over 7,000 rare diseases and I have one of them. All of the diseases are different, but the one thing that is the same is that it affects people no matter what your race or religion is. The effects of being ill often times can cause death, it can also detour and change relationships, and the most common one and one that I fight often is my own self-worth.

Laurie Edwards says that there are two classes of people ones who live a healthy life and ones that live with an illness. I am one who lives with an illness. “The symptoms are invisible. Symptoms and disease progression vary from person to person. Disease progression and worsening or improvements of symptoms are impossible to predict. It is treatable not curable” Laurie Edwards from her book “In the Kingdom Of The Sick.”  For almost 5 years I have lived and managed my disease. I have had 34 surgeries, 3 near death experiences, changes in my appearance, and a long time to recover from the new changes. I am not dwelling on the negatives, I can’t. If I did I would not be where I am today. I have chosen to look at the positives, the love, and the joy that I am allowed to experience in my life. It is far different than anything I have every wanted, but the new changes also have brought me to an appreciation of my own life and the relationships that I want to cultivate.

Healthy individuals would consider my long road a devastating one and not worth all the time and effort I have put into just living. They consider my life miserable and often times I am told even by family members I don’t think I could do that. Having a rare disease has not changed who I am. I am still the fighter, I am still the colorful butterfly soul who flutters around and says things bluntly, and I am still able to laugh and enjoy my music. I just make different noises than I use to. The core of who I am is a woman who knows God intimately and experiences His love every second of the day. Every time I am able to take a deep long breath and feel it reach into my lungs and diagram I feel that love and am reminded of that love.

I am a blessed woman. I have an excellent support system. I have great insurance that has paid and will be paying for my care-giver, medical care, and the supplies it takes for me to take care of myself. Often times I am bewildered that it took a life threatening event to show me who I am, what I am capable of, and what I can take. I am using my voice. I am choosing to live well, even if living well seems impossible at moments. I am still in charge of how I think, use my voice, and take care of my relationships.

One thing I do want to remind people is that we are all human, we all need love, and we all need support even if we don’t understand what the other person is going through. These core things are still valuable and required by everyone.  Remember that today. We are worth fighting for. Let’s thrive…

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