Skip to main content

One year ago today...

It's hard to believe that tomorrow will be a whole year since my BLA.  I definitely think my expectations were high, and no, life post-op has not necessarily met those expectations.  Despite the many speed bumps (and brick walls), I still feel as though I made the right decision.  (Keep an eye out for upcoming posts about making tough medical decisions!)

To summarize the past year, I thought a pro-con-pro session was in order. (Thank you, Tri Delta for teaching me this important life skill of starting and ending on positives)

  • I have lost 42lbs, bringing me back to my pre-pituitary surgery weight.  About 70 more to go!  
  • I got into school!
  • I finally got to visit my bff and biggest supporter in Brooklyn - 3 apartments and almost 3 years after he moved to NYC
  • I still don't feel "well".  I have a hard time doing anything strenuous, I am still dealing with crazy swelling issues, I don't feel anywhere close to what I would imagine a normal 25 year old should feel like, and don't know if I will ever have the luxury of feeling "normal".  
  • I couldn't go to school.  Biggest disappointment ever - probably harder to deal with than all of the health issues over the past few years.  I thought I was finally going to be moving on with my life and have some positive changes coming but I guess it wasn't meant to be right now.
  • I still don't feel like I have any doctors looking out for me.  I have been the one and only person to diagnose myself each and every time there has been something wrong.  Yes, I respect and need their advice, lab test ordering, and prescription writing capabilities but I still feel like I am in this alone.
  • Watching friends from our support groups go through similar and worse things makes me so upset for the same reasons.  We are all in this together, but most of us without 100% support from the medical community.
  • I have learned more about adrenal glands, adrenal insufficiency, thyroid glands, and pituitary disorders than I could have ever learned in a classroom.  I have learned what it feels like to be a patient when doctors have no answers.  Hopefully all of this will serve me well someday as a physician.
  • I am sitting here, well enough to blog about my experiences.  Many are not so lucky.  A little over a year ago, a radiation oncologist told me I would be foolish to wait 2-3 years to see if radiation would kill my tumor.  He was afraid Cushing's would kill me before then. Thankfully, they had other options and here I am today!
So overall, no, I am not feeling great and no, I do not think this is a magical surgery that can cure everyone of Cushing's.  It was a trade off, but so far, I think I have done pretty well and can only hope to improve more over the next year.  

August 2010 (weeks before BLA)

Summer 2011 (I have decided I'm ready for more pictures in my life now - I have almost NONE from the last few years!  Until then, these are what I'm left with.)


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