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

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Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time. I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died. She lived a wonderful long life, but it was especially hard on me. She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself. Yeah, you read that right. The day after re

Yet another health update...

As many of you know, things haven't been that great with my health lately. I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting. My ACTH levels have increased dramatically since a few months ago. This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising. She seemed a little concerned about this recent increase and took a look at my MRI from July. I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries. She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus). This could be because I have tumor growth, which would make sense because of the increased ACTH. She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's. So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis. I would say this is one of the most common links I have with other "Cushies". We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland. I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on. It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner. Would I have needed an adrenalectomy? Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's? It's ha

Life with Chronic Illness

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