Skip to main content

How to Help a Sick Friend

As I sit in bed tonight, wishing I could really sleep for the first time in over a week, I was flipping through my newly opened issue of allure magazine.  I try to save these silly magazines for moments like this - in waiting rooms, when you can't focus on a book, or before bed, where anything too exciting will just make me wide awake again.  A short article caught my eye - "How to Help a Sick Friend", an interview of Letty Cottin Pogrebin, the author of "How to Be a Friend to a Friend Who's Sick".  The article was fine, short and sweet, and did contain some helpful, but pretty obvious tips, like listen carefully, and stop by, but I am hoping for the book to be a little more substantial and helpful for people wondering what to do in a tough situation.

Through the years, as I have struggled through tough diseases, surgeries, and now a lifetime of surgeries and tumors ahead of me, I have seen friends walk away, not know how to act, and I lie on a daily basis when someone asks "How are you?", because they often don't know the true answer to what they are asking.  The truthful answer would be something like awful, devastated, terrified, or just tired.  I sometimes feel like my small group of friends can't handle the hard, often teary conversations about the newest tumor, and the tumors to come.  So I, the sick one, protect them from it, because I can no longer protect myself.

I often turn to my mom to talk about these things, burdening her, because she is one I know won't be able to run away.  We talk about trips that I would like to have a chance to take before I someday have a tumor that can't be treated, how even my own brother and sister don't really understand what is going on.  I cry about the scariness of all of this.  Asking why this is happening to me.  I am not the strong, brave patient you see on TV.  I cry, I complain.  I don't pretend not to be scared.  I am not sure if I am supposed to be honest, or put up a brave front.

I will be reading this book, and if you want to read with me, I would be happy to discuss it!  Either on my blog, on the phone, or over lunch!  Leave a comment below if you have any other book suggestions like this!

Comments

  1. I don't know if you get this too... I just went to visit a NEW endocrinologist who (hopefully) will start treating some of the issues I still have instead of just managing my symptoms.

    Visiting new doctors is so hard for me. I'm a very emotional person too.... but what I dread most about new doctors "Really? You had a confirmed diagnosis of cushings??" Its at that moment I always feel like some type of zoo animal. Do you ever get the same feeling?

    ReplyDelete

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…