Skip to main content


Showing posts from February, 2016

Rare Disease Day 2016

Today is Rare Disease Day!  It is recognized internationally, and is becoming more well known in the US.  Having a rare disease is not easy.  For many, it takes way too long to just be diagnosed, then there is the issue of treatment.  I can't even count on my fingers and toes the number of times I've had to explain my rare diseases to a doctor, or a nurse, or even friends and family.  My rare disease is Cushing's Disease.  I may also have carcinoid syndrome, but that is yet to be proven or officially diagnosed. I have included some links below to a few helpful articles and websites! 16 Reasons You Should Pay Attention to Rare Disease Day 24 Things People with Rare Diseases Wish Others Understood NORD

New Doctor

I saw a new doctor last week.  He is a neurologist, but only practices part time due to other obligations.  He spent over 3 hours with me going over my medical history from birth to present.  We talked about how long I went before I was diagnosed with Cushing's Disease, but how pathology from my pituitary gland never showed a tumor.  He mentioned carcinoid tumors, and we talked about how many times that has been mentioned, as a possible cause to some of the strange symptoms I've had over the years since my adrenalectomy. There have been a number of abnormalities on imaging studies in the last 2 years, so we went over each of those.  His hunch is that I do have a carcinoid tumor, and it's probably in/near my residual thymus tissue that recently showed some enlargement. I am looking forward to working with him over the next few months to try and find a cause for the shortness of breath and fatigue.


I have this struggle, especially at work, with how much to talk about my health issues.  I feel like I want to yell at a coworker when they complain about stomach aches, or headaches, or other minor aches and pains.  I want to say that it's only a fraction of what I deal with every single day.  I want to say I would gladly trade them for a migraine that lasts only 2 days.  I would love to be tired because of a baby up all night instead of sleeping for 10 hours only to wake unrefreshed. I always struggle with speaking up for myself, or not caring what people think.  I feel like a horrible person for thinking these things when someone complains about normal things that everyone complains about.  I do care, but it's hard to relate.  I wish I could talk openly about how I actually feel today, when someone asks "How are you?".  I know they are expecting "well" or "okay".  One time I would like to say, I'm struggling to get through the day because