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

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…

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…

Keeping in Touch

I have found it harder and harder to keep in touch with friends lately. I feel like it should be the opposite, with these smartphones in our hands 24/7, but I just feel more isolated.

A big part of the problem it is that I live at least an hour away from most of my friends, if not more.  There's not a lot of friends that I can call last minute to say "Hey, want to do something?".  Any activity takes more planning, more effort on both sides.  I often hesitate to plan something too far in advance because I'm worried I might have to cancel if I don't feel up to it.

I tend to plan more group events where I have the control, like yearly trips to Martha's Vineyard (which is so so soon!), where I usually have my own car, and it tends to be a slower paced weekend.  I won't inconvenience anyone when I need to take a break.

I need to make more of an effort, I know that.  And if I cancel on you once or twice, don't take it personally.  It's probably just be…