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Cushing's Awareness Challenge - Day 27

It is hard to be a good friend when you are sick.  Illness is all consuming.  Not many people my age really understand that.  At 30-something, most are consumed with careers, finding who you want to spend your life with, having kids, even buying homes.  Illness is a foreign subject.  No one knows what to say when I bring up anything health related.  The room gets quiet.  
On the other hand, illness is my whole life.  I don't know anything about having a real career, having a boyfriend, buying anything major, let alone a home.  And kids are not even on my radar yet.  My life is filled with medications, appointments, side effects, disability applications, lab tests, and trying to keep on top of all of that, because I can't count on anyone else to. I live a lonely life.  Not on purpose, but almost by default.  Sure, I have friends.  I even sometimes talk to, or see these friends.  But we often can't relate to each other's worlds.  

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Cushing's Awareness Challenge - Day 26

The Pituitary Network Association is one of my favorite resources for getting information about pituitary related things.  They have published a Patient's Bill of Rights that I have referred back to hundreds of times.  I used to have it hanging at my desk at work.  I have posted it on this blog before, but will post it again today, just because I think it is so important.  I especially love the second to last one. 


Patient's Bill of Rights  Preamble The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders. PNA is supported by an in…

Cushing's Awareness Challenge - Day 25

Did you know that dogs and horses get Cushing's too?

Horses and dogs have similar symptoms to humans, like muscle weakness in their legs, and central obesity.  Horses' hair gets curly too!  That is a newly recognized symptom of Cushing's in humans.  When I told people about Cushing's, one of the common responses was "My friend's dog had Cushing's!"  Veterinarians know a lot about Cushing's, often even more than a regular endocrinologist!






Cushing's Awareness Challenge - Day 24

What do you think of when you imagine someone who is disabled?  Do you picture someone in a wheelchair?  Or someone who uses another mobility aid?  I'm guessing, if you are reading this blog, that might not be the first image that comes to mind.

So many people around the word have invisible illnesses, many of those illnesses can be disabling.  For me, it is not one illness alone that can be disabling. It is the combination of many, and maybe even medication side effects also.  But, no one would know from the outside that anything is wrong with me.

My doctors know, they are the ones who suggested I might benefit from a handicap placard, not to be used always, but on the days where I have the most fatigue, trouble breathing, or joint stiffness.

My friends and family are aware of my invisible illnesses, they are the ones who pick up on the blue tinge to my finger tips and lips when I am walking, and suggest slowing down, or even sitting to take a break.

I also think this is where …

Cushing's Awareness Challenge - Day 23

Being a caretaker is hard work.  Especially when you are taking care of someone with a chronic illness.  I have experienced being on both ends, as the person being taken care of, and the caretaker.

My mom is my main caretaker.  She is the one who sometimes comes with me to appointments, or will be the one in charge when I get very sick.  She is also my health care proxy, so she makes decisions about my health when I am not able to.

I help take care of my grandmother.  Since I can not work, I have the most time to drive her to the post office, or to the bank.  I also take her to appointments, or just sit with her at her home.  She is still able to do some things by herself, but at 91 years old, she needs more and more help with simple tasks.

To be a caretaker, you need to take care of yourself FIRST.  You can't help someone else if you are not helping yourself.

With Cushing's, most people benefit from having someone around them most of the time.  You never know when you will …

Cushing's Awareness Challenge - Day 22

Steroids are my BFFs, but at the same time, they are the enemy.  When I had Cushing's, steroids, whether produced from your body or taken in pill form, were the absolute worst.  Now, my life depends on them.

It's a hard switch to flip, and years later, still finding myself battling the need to hate them.  
I hate taking medication daily. I hate bringing pill bottles, needles, and vials filled with steroids everywhere I go.  I often have pity parties, or bribe myself with a treat in order to get those medications down every day.  
It seems like, instead of getting easier and more routine over time, it has been getting more and more difficult. 
I am always terrified of taking too much and gaining weight.  I am not as scared of taking too little and ending up very sick.  It seems so backwards, but I think that is the leftover mindset from Cushing's.  
Do you take medicine every day? How do you stay positive about it?

Cushing's Awareness Challenge - Day 21

I always struggle with what to say, or how much to say, about my chronic illnesses.  Someone might make a comment like, "You look so tan!  Have you been on vacation?"  and I am not tan from the sun, I am tan because of my rising ACTH levels, or maybe because I am jaundiced.  I sometimes have given the full, real answer to people I encounter in a hospital setting, like lab techs, or nurses, but what do I say to everyone else?

I have the same trouble when people ask how I'm doing.  I have a hard time being honest and saying I feel horrible, all the time.  My canned answer is always "I'm OK".  How much do you tell people?  And really, how much do they want to know?  Are they looking for the full story, or just asking out of politeness?

How do you face these challenges?   How much do you disclose?