Skip to main content

Cushing's Awareness Challenge - Day 15 - The Emotions of Diagnosis

Before my diagnosis, I was having a hard time just getting through a day. I couldn't bear to walk up a hill to classes (which my deteriorated leg muscles clearly couldn't do), sitting through a class and trying to concentrate, and not being able to do fun things like college students do. When I found out a pituitary tumor, I thought that the nightmare I was living would be over pretty fast.

I imagined that a tumor would be a sure sign that I did have this disease I had been campaigning for.  For the week between my MRI and my endocrine appointment, I was able to joke about my "brain tumor" with my roommates, I cried my eyes out to my academic advisor, but most of all, I was angry.  Angry that it took so long to get this clue, angry that I was actually right about my probable diagnosis, angry at everyone who doubted me or told me to go exercise more.

Going back and reading this post that I wrote just weeks after being diagnosed with Cushing's, I realized I still struggle with those feelings of loss.  In the post, I wrote that I will be getting back to normal soon.  I didn't realize how long this journey could take.  More than 2 years later, I have come to the realization that  THIS is my new normal.  I will never be a "normal" 26 year old, or 40 year old, I will always have to be careful about my medications and worry about anything that could compromise my new version of health.


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