Thursday, April 7, 2016

Cushing's Awareness Month: What You Have vs. What Doctors will Say You Have

What Doctors Will Claim You Have Instead of Cushing's, because Cushing's is too rare

  • Obesity (lose weight, lose symptoms)
  • Polycystic ovarian syndrome (PCOS)
  • Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
  • Back and muscle pain
  • Diabetes
  • Blurred vision, visual field loss, double vision
  • Chronic fatigue syndrome
  • Dry, oily, or sweaty skin
  • Impotence or infertility
  • Joint pain, joint/bone abnormalities
  • Migraines
  • Muscle weakness, carpal tunnel syndrome
  • Temporomandibular joint/TMJ/jaw joint pain
  • Thyroid imbalance or "slow metabolism"

What your symptoms really mean if doctors put them all together - CUSHING'S

  • Facial redness
  • Rounding of the face (moon face)
  • Unexplained weight gain around belly
  • Pink or purple stretch marks
  • Thicker or more visible body and facial hair
  • Acne
  • Muscle weakness (difficulty standing or climbing stair)
  • Extreme fatigue (no amount of sleep is enough)
  • Depression, anxiety and irritability
  • Pink, red or purple stretch marks along your abdomen, arms, or thighs
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Bone thinning (osteopenia, osteoporosis), easily broken bones
  • Recurrent infections
  • Sleep disturbances, night sweats, awake at midnight or 4 am
  • High blood pressure
  • Diabetes mellitus
  • Irregular or absent menstrual periods in females
  • Clotting disorder

And whatever you do, be careful not to be labeled as a DIFFICULT PATIENT, because your likelihood of being misdiagnosed goes up to 42%!

So you say, How can I approach this "delicate genius' and expect to get help? Well, my best advice is to write down all your symptoms in a laundry list like the one above. Highlight the ones that your online research has linked to cortisol imbalance. Present the list of the doctor and simply say, "With the multitude of symptoms I face, I'd like your help in testing me for cortisol and other hormone-related imbalances. If they argue or ridicule you, that is a clear sign, a cue... Find a new doctor.

Wednesday, April 6, 2016

It's Cushing's and Adrenal Insufficiency Awareness Month!

Day 1: It's Cushing's and Adrenal Insufficiency Awareness Month

772,998 page views.

2016 not 2015. Mistake from a Cushie Mind.

I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.

I look back at the 510 posts I have made, and I have mixed emotions.
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.

I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.

I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting. 

Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.  

  • I was too sick to type.
  • I was too disappointed to share.
  • I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
  • I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share. 

Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind.  In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle.  Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.


This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.

My goal simply is to finish the awareness challenge, because there were years in the past when I just couldn't. I have no idea what I will articles, opinions, or stories I will share in the coming 30 days. I hope you stick around to see what happens!