Cushing's Awareness Challenge - Day 18 - Speaking about Cushing's

Have you ever spoken in front of a group of people about Cushing's? I'm preparing to go down to Florida, where a very good friend of mine is presenting her final project - ME! She is in her last year of PA school and has asked me to go down for the presentation.

There are going to be a lot of obstacles to this trip. First, it is only my second time flying alone and the first time didn't go very well. Not only am I nervous about going through security with all of my medications (and long needles), but I also get extremely sick. I usually take medication ahead of time and have had good luck in the past, but it didn't work out so well a few years ago flying from Boston to DC to Indianapolis.

Do you have any suggestions for me? Are you ok when you fly or do you get nervous or sick like me?

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 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

Search This Blog