Today I had my annual cardiology appointment. I do not go to your typical cardiology clinic, but one located at a local children's hospital. At the age of two it was discovered that I had a heart murmur and sent to this same hospital. I was then diagnosed with Marfan Syndrome and seen there throughout my childhood. Thirty … Continue reading I’m 32, and I still see a doctor at a children’s hospital.
With the holidays just around the corner, and the stresses of finding that perfect gift to give, I decided to do a post for a special group people. When you have a rare disorder like Marfan syndrome your days can be complicated, and painful. Life can be made slightly uncomplicated with certain products that many Marfan … Continue reading Six Gift Ideas For The Person With Marfan Syndrome.
In the past few days some big news has developed in the Marfan Syndrome world. One of the Marfan Foundation representatives decided to continue his dream of becoming a professional basketball player. Isaiah Austin had big dreams of becoming an NBA superstar, but those dreams were cut short when it was discovered that he has … Continue reading When Isaiah Austin Decided To Play Basketball Again…..
This is a picture of me at urgent care. I am in my scrubs because I just got off work. I got mistaken for a nurse by a doctor who was wanting to know where the lab is located. I had no clue because I am not a nurse in this facility. He had … Continue reading This is What Chronic Pain Looks Like
When you are a mom with a chronic illness you question how exceptional of a parent you are from time to time. I have given myself too many guilt trips to count. I have wondered if I am actually good for my children. I have thrown myself so many pity parties and hoped I would be able … Continue reading Chronic illness and Mom guilt
When you have a chronic illness you sometimes have to pick and choose what activities you can do. Even though we may want to say yes to every little event we are asked to, we know sometimes we just have to say no. It's not that we want to decline. It really is a matter … Continue reading Why I may decline the invite.
I was diagnosed with my rare illness at 2. I was lucky to be diagnosed at such a young age. First and foremost, it probably saved my life, but it also saved me from knowing what life was like before a diagnosis. To me, Marfan syndrome was always known. I can’t remember a day I … Continue reading What to say to a person that is newly diagnosed with a rare disorder.
Basket of Lemons 