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Life Update

The last month has been a little crazy, some good, some not so good.

On the good side, I surprised my brother for his birthday with a trip to Nashville!  I coordinated with his girlfriend, and walked into the restaurant they were eating dinner at the night before his birthday.  I think he was surprised, and we had a fun weekend together. I hadn't seen him since November.

My room has been painted and cleaned!  Or maybe the other way around, cleaned and then painted.  I am not a neat, organized person when it comes to clothes.  I have too many, and probably half of my clothes are either too big, or too small from all these weight fluctuations.  I gave away two big garbage bags of clothes to my neighbors (3 girls ranging from 14-25, and their mom). I'm still working on decorating, but I love the color!

I also volunteered at a 3 day conference for high school sophomores.  I went to the same conference as a teenager, and met most of my close friends through volunteering. It was ma…
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5 Things I'm Looking Forward To

Warmer weather, which is hopefully on it's way to the northeast.  I can't wait to wear dresses without leggings, and sandals!
Martha's Vineyard vacation this summer with friends, as always.  One of my favorite weekends of the year!  This year, we are going for a week!
Half hour long phone calls with a certain friend that never fail to cheer me up.
Volunteering for an organization that I've been super involved with in the past, but have taken a few years off.  I'm getting back into it this year by volunteering at the 3 day conference!  I am a little worried that it will be too physically taxing, but I want to try. 
Dating?  Maybe?  I'm out there on all the dating apps apps, and tried a month of Match.com...I haven't had much luck but we'll see what happens.

Cushing's Awareness Challenge - DAY 30!

Today is the last day of this Cushing's Awareness Challenge.  I want to reflect back on the month, finish up any stories I didn't finish yet (I know there's at least one), and share a few of the favorite posts from the month in case you didn't see them. 
First - in unfinished business - I still haven't had the correct PET scan, or heard back from the doctor who ordered it. I have a scheduled appointment with him in June, but would rather not wait that long.  
I saw my new primary care team this past week!  I am so happy with the new situation, and hope that this team will be taking some of the workload off my plate, just by being in the same system as my specialists.  I am usually the one coordinating care, making sure everyone is staying updated, correcting lab orders, because my health is literally in my own hands, but having an actual M.D. helping should make things a little easier on everyone.  
Your Favorite Posts:
Day 4 - I Wish I had Cancer Instead
Day 9 - Sur…

Cushing's Awareness Challenge - Day 29

Cushing's Awareness Challenge - Day 28

My appeal for social security disability was denied.  I feel so defeated. But, will fight on, because what other choice do I have?

Many people with Cushing's, adrenal insufficiency, lupus, and other chronic illnesses cannot work due to their disability.  It is not easy to apply for disability.  There is a lot of paperwork involved, which can be hard emotionally to write about how much your illness limits you.  You have to talk to all of your doctors, and get their support.  Sometimes, even they will not understand the full picture. 
My mom has said a few times in the past week, if people like me can't get approved, who is it meant for?  I think people have a hard time believing someone as young, and as healthy LOOKING as me, could have such disabling illnesses.  I have tried my hardest to continue to work.  If it were up to me, I probably would still be working part time, and being hospitalized routinely because of it. 
I made it through the entire winter, even with mono, with…

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.  

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 …