Skip to main content

Cushing's Awareness Challenge - Day 25 - Life Isn't Fair




(For some reason, this photo has been REALLY popular with the Cushing's group...I bet you can guess why based on the plethora of blog posts about how much Cushing's sucks!)

Everyone has heard that life isn't fair.  I seem to get this lesson over and over and over again in my life. From being 285 pounds and the sickest I hope to ever be, to unsuccessful surgeries and getting into school and not being about to go, and of course being a medical mystery for the last few months.  I didn't ask for any of those things yet they were all put in my way for me to deal with them.  Yes, it has made me a stronger person.  Yes, maybe things happen for a reason.  That doesn't mean I smile through it every day.  

One of the other things that hit me like a ton of bricks was that I will never get to be a "normal" 26 year old.  I don't even know what normal is but I would guess it involves things like living somewhere that's not your mom's house, and having a job where you make enough money to pay bills and maybe have a little left over, and not taking and carrying around syringes and medications everywhere you go.  (True story - I cried a few weeks after my adrenalectomy when I realized I will always have to carry a bag with me because of medications.  We were apple picking and I couldn't deal.) That's not fair, but that's my life and I have gotten used to it since then.

Yes, I cry a lot and have very hard days but I think I have to give myself (and all the other Cushies out there) a little credit because we are STRONG.  I have had many days where I just want to sleep and never wake up to deal with another hard or disappointing thing, but I haven't given up yet.

















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

Happy New Year!

Happy 2018!  I hope this year is a good one for everyone.  2017 was not the best year for me, and it seems like a lot of people relate to that, either for personal reasons or global ones. 2017 started off with me being in the second month of unemployment.  I had just been denied social security disability for the first time this go around, and was feeling sicker than ever. Over the last year, I've faced more challenges than I ever thought I could, and somehow made it to where I am today. In 2018, I'm looking forward to finally being approved for disability.  I am also looking forward to some resolved health issues, or at least next steps in figuring out what is wrong. I hope 2018 is a happy and (relatively) healthy year. Happy New Year!

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