Day 5: Cushing’s Awareness Challenge 2015

Posted on April 5, 2015 by MaryO

The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!

MaryO
         MaryO

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Spoons

Posted on April 4, 2015 by MaryO

I did not get a chance to blog yesterday because I ran out of spoons. The past couple of days have been rough. I was talking on the phone with my mom and said that I was really dragging today and I didn’t know why. She then reminded me that I have felt this way for several days. Today is even worse but because it is the weekend, I can make this the first thing that I really finish. FYI It is early evening.

via Spoons.

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Emily Post for Cushing’s, Part II

Posted on April 4, 2015 by MaryO

“5. “I wish I could stay home and sleep all afternoon/I wish I could take a few months off work/I don’t have the option of staying in bed – I have children” or anything in that genre. This one kind of follows the same theme as the others. I didn’t stop working because I had the luxury to do so. I got a call from my boss one evening and was told I was being taken off a case because I was too sick to go to the office and I was trying to meet a deadline by working in three hour shifts from my bed around the clock. I didn’t choose to sleep all day or choose to not get out of bed – if you get sick enough, your illness takes those choices away from you…”

attot's avatara tale of two tumors

This post is a continuation from Part I and covers what to say (or not say) when trying to be supportive to someone in your life that is struggling with Cushing’s or another serious illness.  Part II, below,  focuses on the topics of giving advice and commiserating with someone suffering with Cushing’s.

4.   “Oh, I know all about how bad hormones are – I had wicked PMS last week!”  or “Oh, I know all about exhaustion, my [kid, job, etc.] kept me up all night too!”   You may understand how PMS or sleepless nights for work or a child may feel.  That does not mean you understand how it feels to have a brain tumor pump high levels of hormones into your bloodstream and to have no idea if and when it is ever going to stop.  Attempts to commiserate by comparing the two can give a person with…

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Day 4: Cushing’s Awareness Challenge 2015

Posted on April 4, 2015 by MaryO

 

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

 

 

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

 

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Cushing’s Awareness Month Day 3: Relax, Part Two.

Posted on April 3, 2015 by MaryO

Hopefully the tips and tricks I borrowed from Greatist.com yesterday helped you take a break from reality and relax. If not, here are more tips and tricks to help you stay focused, stay calm, and stay healthy.

via Cushing’s Awareness Month Day 3: Relax, Part Two.

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