Skip to main content

Cushing's Awareness Challenge - Day 28

My appeal for social security disability was denied.  I feel so defeated. But, will fight on, because what other choice do I have?

Many people with Cushing's, adrenal insufficiency, lupus, and other chronic illnesses cannot work due to their disability.  It is not easy to apply for disability.  There is a lot of paperwork involved, which can be hard emotionally to write about how much your illness limits you.  You have to talk to all of your doctors, and get their support.  Sometimes, even they will not understand the full picture. 

My mom has said a few times in the past week, if people like me can't get approved, who is it meant for?  I think people have a hard time believing someone as young, and as healthy LOOKING as me, could have such disabling illnesses.  I have tried my hardest to continue to work.  If it were up to me, I probably would still be working part time, and being hospitalized routinely because of it. 

I made it through the entire winter, even with mono, without needing to be admitted.  I think the only reason that happened was because I was not working.  If I was still working, I would have worked through being sick, probably gone to the hospital, and spent two weeks recovering at MGH.

So, I will appeal again.  I will get an attorney.  I will fill out all the paperwork for a third time.  Because my life might depend on it.

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.

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…

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…