Skip to main content

Less Than? Or Enough?

For the past few weeks, I have felt on the edge of tears, almost always.  I'm not sure why, but cried it out today in the shower.  It felt good, to be relieved of all the tears, but they didn't go away like I thought they would.  I'm definitely a crier.  I cry reading books, watching movies, seeing "mushy" commercials.  But this was different.  I'm with my favorite people on vacation, I don't have to work, I feel OK physically, I've been sleeping pretty well, I can't figure it out. 

I assumed hormone fluctuation, as always, but usually that comes and goes pretty quickly.  This has been at least 2 weeks, probably more.  Of course there are more stressors over the holidays, but we've settled into a routine.  Maybe I have Cushing's again.  Maybe my questionable rest tissue is working and giving me cortisol highs.  Maybe I'm feeling the lows after the highs.  Who knows.

The past few days, on vacation, as everyone is re-introducing themselves and asking the basic questions about what you do for work, where do you live, (FYI - my least favorite questions).   I told everyone about my job triaging phones, and someone asked if I was a nurse.  False.  Not that educated.  Where do I live?  At home with my mom.  Not in Boston, not even on my own in Plymouth.  With my mom in Plymouth.  I hate these questions mostly because of my answers to them, but also because the answers to these questions give people no insight to what I've been through, no idea of how much I have accomplished, no sense of the battle I fight every day to stay alive and well.  

When people ask these questions, I feel like less of an adult.  Less than everyone else.  I posted this in my support group this morning, along with a quote from a book I was reading.   "You don't get to choose if you get hurt in this word, old man, but you do have some say in who hurts you." - John Green.  My supporters and teammates in this awful disease built me up again, I am a survivor, a fighter, stronger than anyone that I feel less than.  All of them have been through exactly what I'm going through as someone who looks healthy on the outside, but feels less than 100% most of the time.  

I hope the tears will pass, and that I won't make a fool out of myself here in front of all of my friends.    I have to remind myself that I am not less than, but equal.

Comments

  1. This gave me a little light in my tunnel of darkness... I've been feeling blue lately. I too am extremely emotional. ALL the time. Its a struggle at times, but you just have to get past feeling uncomfortable about it. Your emotions run very close to the surface and because of it you ride the ups and downs of life just a little bit more than everyone else! let yourself smile and relax. :)

    I'm still struggling with the weight gain from cushings. Its been 8 years since my surgery and I still have a long way to go :( Despite me being healthy 80% of the time (I fall off and have my days) the fat wont budge. The worst is having people tell you that "maybe you should try eating a few more vegetables?".... *sigh* the issues that medically challenged people deal with that the rest of the world will never understand. ...

    ReplyDelete
    Replies
    1. I know Cristen! I totally understand the "suggestions". I was asked if I was concerned about my protein intake when I chose to eat just salad for dinner one night. Nope. Not concerned, just had a craving for oil and vinegar, and therefore, salad. I just follow my cravings most of the time. I figure at this point, I'm a fool not to listen to my body.

      Delete

Post a Comment

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…

Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease.

Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source

1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help HERE.  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see.

2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midnight se…