Cushing's Awareness Challenge - Day 27

Cushing's Awareness Challenge - Day 27 - Weight Chart

I have been pretty open about my weight since I started losing, but would've never imagined of telling ANYONE, not even my mom, when I weighed 285lbs. Now that I weigh less, I feel more confident and proud of how far I've come. So, I am sharing a weight chart that I have kept since 2006, to keep track of the weight I was gaining, and rarely losing. (ignore the lighter purple lines, those were my weight loss goals.

For those wanting to analyze, my starting weight in 2002 was 226lbs, when I suspected I had Cushing's but was not diagnosed. When I was diagnosed I was 253, in October 2009. After my first surgery, you can see the drop right before 1/2010, then it went back up to 256 over the next 10 days. The second surgery was 2/16/10, and my BLA was 9/2/10. I took myself off steroids 9/25/11, and went back on a few weeks ago, but have seen no slowing down with my weight loss. I try to record my weight once a week. I think I only have 15-20 more pounds to go to reach my pre-cushing's 16-17 year old weight. I used to think I was HUGE at 160lbs, now it's the thinnest I've been in 10 years.

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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…

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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…

Life with Chronic Illness

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