Skip to main content

Cushing's Awareness Challenge - Day 6

So, I've changed the name of this blog.  I've been thinking about it for a long time, and Life with Cushing's didn't really make sense anymore.  I don't have Cushing's at this time, and Life with Chronic Illness is a more accurate phrase to describe my life.  Of course, this doesn't change the fact that Cushing's is still a big part of my life, and will continue to be a big part of my blog.  

What do you think? 

Onto today's post for the Cushing's Awareness Challenge...

As you may have read over the last week or so, I had a PET scan scheduled for yesterday.  It didn't go as planned.  I had been having insurance issues, and waiting for special approval to change plans even though it was outside of the window to do that this year.  I called every day, waited on hold for up to an hour, and on Thursday, the approval came in.  Just in time.  Well, as usual, that was the end of my luck.

I arrived at MGH, and they started prepping me for the scan.  The first red flag, they didn't make me change.  They ALWAYS make me change (see the post from a few days ago!).  I was thrilled, of course, but something didn't seem right. Then, the person getting me set up mentioned something about me only needing a portion of the regular dose of the tracer used.  I questioned this in my head, but was still trusting.  As he was escorting me back to the waiting room, he mentioned something about "figuring out the cause of these seizures". Wait a second...I don't get seizures!

I told him, he was wrong, I've never had a seizure, and he said he must have looked at the following patient's chart. I told him I was planning on having a PET scan of my entire body, or at least my chest to check for neuroendocrine tumors. I was having a PET scan on my brain!  I think they tried to call my doctor, but he was unavailable. I ended up having the scan anyway, maybe I was mistaken!

 I emailed him immediately following the scan to tell him what had happened, and maybe I was mistaken when I assumed the PET scan would be on my chest, or maybe my abdomen too.  

I'm still waiting to hear back, but may have to go back for another scan, this time on the right body part.  (Yes, I'm rolling my eyes!)



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

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

MGH Round 2

Hi all, I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights. After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which w