Thursday, September 14, 2017

Learn to Trust the Journey, Even If You Don't Understand It.

       Let's Admit. We have all  had days where when something goes bad at work or not as expected we feel overwhelmed and emotionally drained. But what about that moment when you receive and unexpected diagnosis? So many emotions fill in you head, so many thoughts and unanswered questions come into effect, and all you want is information on how the condition will affect you in the future. You want answers to what treatments are available. You spend countless hours behind the computer searching the internet for research only to find there is a lack of information on your diagnosis being that it is rare and there is no supporting organization. You join support groups on social media only to realize we are all in the group for the same mission.....awareness and answers.

      What about breaking the news to your family members? What about those who don't seem to understand and make it as though you did something to cause this? Or those family members who are stuck in the older generations where they believe people today are diagnosed for every little thing. The times you have to fight with insurance companies and Doctor's for approval on certain situations you feel would benefit your condition. Rare is real. Being diagnosed with a rare condition affects not only you, but those closest to us.

      Let's not forget to mention all the time needed to be taken off work/school for specialty visits, testing, and surgeries. The medical bills that pile up from medications and hospital visits that leave you in a financial hardship because this wasn't something you planned for. What about the mental effects from having a diagnosis that lead to anxiety and depression...even thoughts of suicide? Rare is real. Even if we don't understand it, we must learn to trust the journey. Unexpected things happen along the journey and although its not what we hoped for, we don't know how our story will end.....but nowhere in my text will it ever read I gave up.

-Blount's Disease Strong

Monday, September 11, 2017

You Can't Win What You Don't Fight For

          Everyone is fighting their own battle you know nothing about. Every day, someone is diagnosed with some type of condition that can change their lives in an instant. It can mentally impact the family and not everyone will understand the journey. In life we are always going to have those who judge us. Those who will stare, point, whisper, and maybe even laugh. If everyone in the world understood we each have our own battles we are going through, the world would be such a better place filled with kindness, compassion, and respect. But we all know realistically there are people in the world who don't care to understand. Maybe until something were to happen to them or to their family members, then just maybe they would have a change of heart.

        As I sit here and write this blog, I reflect back to when my daughter was first diagnosed with a rare disease. It was overwhelming and stressful to have to learn about her condition and there were times I blamed myself. There were times I would hide in my room and cry because I felt helpless when I wasn't getting the answers I needed or the right resources to get her the right treatment from the right specialist. You cant win what you don't fight for. This isn't about winning battles that make you happy. This is about advocating for yourself, or for your loved one. This is about making your voices heard. Raising awareness and making a difference. At the end of the day, no one understands your child better than you do.

        Fight for what matters most and if you don't feel you are getting the answers you want you get another opinion. Sometimes we have to be our own Doctors when it comes to rare diseases. Not everyone has the answers to every diagnosis. If that were the case, we'd all be cured right?  Whatever journey you are facing let it mold you into being that warrior who will take on any obstacle ahead that you may face. It may take more than one fight, but be that champion who doesn't give up, because you can't win what you don't fight for.

Stay Strong.......Break the silence......Fight for what you want.......

-Blount's Disease Strong