Skip to main content

Houston - Day 2

I was sooo tired at the end of the day yesterday that I just crashed without blogging.  Ellen, my counterpart for this trip, has gone home for work tomorrow so I am on my own for a day before going home.  So far, I think it's been pretty good and a lot of people have stopped by our booth to talk to us.  We've given out a lot of reading material and diagnostic and testing guidelines, and of course business cards and newsletters.  (My story is in the CSRF newsletter this month!)

I've eaten my fill of frozen yogurt from Merck, who is right in front of us with that machine all day, and have a few stops I would like to make before the end of tomorrow, but I'm not sure if it will be possible now that I'm the only one.

I also got the opportunity to go to a presentation today given by an endocrinologist from Case Western on Adrenal Insufficiency.  The huge room was full, there was not an empty seat to be found, and I was surprised to not learn a single new thing!  They discussed medications and dosing for people with adrenal insufficiency and most of the questions were about changing doses.

I guess it's a good thing that nothing was new, if there were new things I didn't know, I think I would be a little upset that I didn't know that before.

Overall, it was a good two days.  I'm so glad we can help a lot of doctors that have Cushing's patients (a lot of them said it was their first!) and give them information to take home to their patients.

I hope tomorrow is just as exciting as the last 2 days!

Comments

Post a Comment

Popular posts from this blog

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…
Post a Comment
Read more

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…
5 comments
Read more

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…
Post a Comment
Read more