Skip to main content

Florida!

So I wrote the last post in the airport waiting for my flight, so didn't get to share too much about my trip.  I was so excited to have a mini vacation and see where my good friend, Christine, had been living for the past 2 years.  As I wrote, the flight down was horrendous.  A thank you goes to the tall man who sat beside me, he kept his tray table down the whole flight and kept most of my belongings on it because I spent the flight with my head on mine.  Great guy who was more than patient in a gross situation.

Anyway I got there, was fine as soon as I got off the plane, and was sweating in my leggings long sleeved shirt in the Florida heat.  For the first time, maybe ever, I didn't mind being a little warm!  I was just so relived to be on the ground.  It was an early morning the next day and we made our way too school for their presentation on ME!  The presentation was great, and I fought tears every time I saw a picture of myself up on the screen, but I made it through with no noticeable breakdowns.  At the end of the presentation, I was invited to talk for a few minutes about my experience as a patient.  I was trying so hard not to cry that I ended up thinking I was funny (I'm not) and made some jokes about getting through security with my huge needles.

The next day was spent mostly in the sun, and it was time to leave way too soon!

I am so glad I went, so happy the flight back was fine (I finally have found the right combo of drugs to fly!), and proud of the group that presented because theirs was obviously the best presentation of the day.

Next trip - Houston (maybe?) for the ENDO Conference!!!!!





Comments

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 re

Happy New Year!

Happy 2018!  I hope this year is a good one for everyone.  2017 was not the best year for me, and it seems like a lot of people relate to that, either for personal reasons or global ones. 2017 started off with me being in the second month of unemployment.  I had just been denied social security disability for the first time this go around, and was feeling sicker than ever. Over the last year, I've faced more challenges than I ever thought I could, and somehow made it to where I am today. In 2018, I'm looking forward to finally being approved for disability.  I am also looking forward to some resolved health issues, or at least next steps in figuring out what is wrong. I hope 2018 is a happy and (relatively) healthy year. Happy New Year!

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you. I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia .  The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule