Having rare diseases creates many challenges. Stumbling blocks and brick walls you run smack into only to be turned around to do it all over again! Frustrating to say the least. And unless you are famous or world reknown, you are likely to be dropped off into the web filled cracks of our health care system. No where to turn, no where to lay your tired being. Terrified, worn out and simply hopeless.
Have you ever been so sick and tired of being sick and tired that you want to just give up on all the doctors, specialists and professionals? I have! But I suggest you don't. Be your own advocate and ask all the questions until you get answers! Make them work for you, with you, not against you or in a dictating fashion. Honey is sweet and kindness, expression of your fears or troubles will help guide them in the proper direction. Building a team rather than preparing for a fight.
Family that doesn't understand or who refuses to try to understand are huge problems, because we depend on them to help and pull us through our darkest hours. Don't be too hard on yourself or them. Realize that they may not be capable of understanding complex problems and if they request, show them a diagnosis and simply show them how to follow through on research. Trying to make them read or understand is only going to upset the family unit. So connect with others that do understand and want to help. Build your support system from the outside in. You will be amazed at who and what is available in your community and on the internet. And allow your family to help in ways that work for everyone. Maybe it's helping around the house or making a few frozen dinners, be grateful. Gratitude gets you everywhere!
My greatest obstacles are all the testings and unanswered questions to what it might be and what it might not be. Doctors who have told me these other doctors are smart enough to test, yet not smart enough to connect the dots to diagnose. Ignorance on that doctors part in my experience, because I found a specialist who understood the methods of testing and answers it produced. An Immunologist! Although I did fire my first and second Primary Care Physician, I found an acceptional one on my third attempt! These two have worked like a well made watch, in sync and step..... Not missing a tic!
It's been a long journey. Difficult and challenging along the way and have almost lost my life several times. I will discuss my many diagnosises in the next blog so be sure to sign up, comment and ask questions! I'll be checking back in very soon!