Skip to main content

No good news yet...

So I'm not doing the clinical trial.  My midnight salivary tests have been too low to qualify me for it.  Everything else was there, I just needed 1 high but my body was not cooperative, as usual.

I go back on May 10th to see what we're going to do next.

In other news, I've developed another symptom.  I noticed at work last week that my forearms were covered in tiny red dots.  They didn't blanch, so I asked one of the doctors I work with about them.  She said they were petechiae, which is little burst capillaries under the skin, and told me to call my doctor ASAP so they can run some tests.  I went the next day to my PCP's office, and the doctor there was great.  He was very interested in my whole Cushing's journey, and agreed with the doctor from work that they were petechiae and ran some tests.  My blood counts were good, (they look for low platelets or other abnormal counts) and I found out today that I don't have vasculitis, which is an autoimmune disease that breaks down your blood vessels.  He thought that might have been the reason for the petechiae, since I have a strong family history of auto immune diseases anyway.  Now I have to go back on Monday to get checked out again since they're at a loss!

The testing continues, I have to do a few more UFCs in the coming weeks.  I thought maybe I was done for a little while, but I got a letter saying they want more.  I should have done them last week but wasn't thinking and didn't get the letter in time, so I guess I'll just have to do them now.  Last week I am pretty sure I was in a high cycle.  It's DEFINITELY cyclical again.

So that's it for now, more mysteries and no explanations yet.

Comments

Popular posts from this blog

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!


April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

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…