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 return…

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…

Keeping in Touch

I have found it harder and harder to keep in touch with friends lately. I feel like it should be the opposite, with these smartphones in our hands 24/7, but I just feel more isolated.

A big part of the problem it is that I live at least an hour away from most of my friends, if not more. There's not a lot of friends that I can call last minute to say "Hey, want to do something?". Any activity takes more planning, more effort on both sides. I often hesitate to plan something too far in advance because I'm worried I might have to cancel if I don't feel up to it.

I tend to plan more group events where I have the control, like yearly trips to Martha's Vineyard (which is so so soon!), where I usually have my own car, and it tends to be a slower paced weekend. I won't inconvenience anyone when I need to take a break.

I need to make more of an effort, I know that. And if I cancel on you once or twice, don't take it personally. It's probably just be…

Life with Chronic Illness

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