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

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

Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease. Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source 1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help  HERE .  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see. 2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midn
1 comment
Read more