Do you remember those Magic 8 Balls from the 1970s and 80s? All you had to do was shake it and an answer would pop up for your question. Yes. Johnny likes me. Or no. He does not. LOL!

Ever wish there was one for Myhre syndrome? I feel the weight of my own health pressing down on my shoulders with very few definitive answers.

The research that has been done has barely touched the surface of this complex disorder. How do I know who I can trust? Doctors with conflicting opinions all have my best interest at heart. They all are attempting to help. Instead, I am just confused. Do I go with my gut? Do I go with genetics? Rheumatology? Gynecology? Endocrinology? The list is endless. I am left with an unsettled uncertainty that feels like one wrong step could have serious consequences. Consequences I may not even realize existed.

In the meantime, I have a nurse reviewing my complex medical data to determine if I am disabled or not. A wrong diagnosis on said disability documentation. (They decided I have scleroderma.) And disability insurance people asking me for more definitive information proving to them I am disabled.

What more do they want? I have sent them thousands of pages of documents from physicians. I have multiple physicians confirming I am unable to work. I can’t give them any more answers because THERE ARE NONE!

This week has been rough. I am feeling very beaten down and exhausted. Next week will be better…..