Skip to main content

Cushing's Awareness Challenge - Day 3

One of my least favorite things about my life with chronic illness is having imaging appointments.  Whether it's my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful.

Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait. 

They almost always make you change, even if you follow their instructions on what to wear.  I almost always go into these appointments in a sports bra, t-shirt, and leggings or yoga pants with no metal.  9 times out of 10, they still make me change into a hospital gown.  I don't know about you, but I would feel much more comfortable in my own clothes.  A hospital gown is not the most comfortable, or flattering thing to wear.  

Next, sometimes you have to have an IV for contrast, or worse, DRINK contrast. Yuck.  Most people with chronic illnesses have so much scar tissue in their arms from countless sticks for labs, IVs, etc., which makes the process that much more painful.  

Then, you wait seemingly forever for results.  No one ever calls you in a reasonable time frame.  I often find out results for myself online before I ever get a call from my doctor.  

I do however, have a few suggestions to make the process easier.  

First, if there is going to be a wait, let me know!  Even just announce to the waiting room, or have a board with waiting times up.  That way I know if I have enough time to use the restroom again, or get a drink (if allowed).  

If you give me guidelines on what clothes to wear to exam, let me wear them!  I will even let you check them for metal. I get that not everyone follows these guidelines, so you make everyone change into hospital gowns, but then don't give me instructions on what to wear.  Someone needs to design more comfortable hospital clothes, that are not so degrading.

There should also be a quick, 2 minute phone call within 3-4 days of the test to confirm everything was normal.  If everything wasn't normal, please let me know as soon as possible.  I lose sleep over this!  

Do you have any suggestions for common problems faced living with chronic illness?  If so, let me know in the comments!


Me, in an uncomfortable, unflattering hospital gown before my appendectomy

Labels:

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 re
Post a Comment
Read more

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
2 comments
Read more

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
Post a Comment
Read more