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

Comments

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

Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help. For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease. Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source 1. Find a reputable endocrinologist that other people with Cushing's have had good luck with. You can find a list on Cushing's Help HERE . You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see. 2. Make and appointment, and be patient! Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back. Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midn

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

Search This Blog