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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.



Struggles

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 I…