Allergic Reaction? Bleeding Disorder?

I had ANOTHER kidney stone on Friday. It started while I was at work, and I was trying to wait as long as possible to leave, thinking maybe it was just the way I was sitting, so I did a few laps around the department and when things began to get worse, I decided to call my mom and meet her at the ER. When I got there, they asked about my medical history, which is usually not a great thing to do. As soon as the nurse heard my list, she brought me right back to a trauma room so they didn't have to wait to get me hooked up to an IV and some pain meds.

The nurse was the same one I had when I had my Last Kidney Stone, it's always nice to see a familiar face when you are in pain! I got IV antibiotics, pain meds, and went on home.

Saturday, I caught a glimpse of myself in the mirror and noticed my face looked red and blotchy, I didn't think much of it but when I woke up this morning it was purplish and had filled in the rest of my face. I went to my PCP and had some blood tests, which I will find out about tomorrow. I had a nosebleed on the way home, and the site where they drew blood was still bleeding an hour later. I put on another bandaid, and well see if that helps I am waiting to see if I need to go to MGH or if I can wait to lab results tomorrow. I'll keep you updated!

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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…

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…

Life with Chronic Illness

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