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Showing posts from April, 2017

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 …

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?

Cushing's Awareness Challenge - Day 20

Many people with Cushing's do not have a supportive primary care physician.  They either don't believe their symptoms, or won't refer them to a specialist. I was fortunate enough to never have a problem with mine.  Although she didn't know much about Cushing's, she was willing to refer me to multiple endocrinologists. I have been going to the same practice since I was born, and now, due to insurance issues, I will have to switch.

Thankfully, my new PCP will be at MGH, where I receive the rest of my care.  I am a little nervous to  "start over" with someone else, but am sure that it will be more convenient for everything to be in the same place.  Although, I am not looking forward to having to drive 45 min -1 hour if I have a sore throat and need a throat culture. I hope I can be as involved with my care as I have been, I love to participate in the diagnostic process, and sometimes even make the diagnosis myself (like with Cushing's).  
I am also plan…

Cushing's Awareness Challenge - Day 19

Do you ever come across someone you think might have Cushing's?  I feel like I can pick people out of a crowd that have Cushing's, it's all about the body type (central obesity with thin arms and legs).

I feel like I see people all the time that might have Cushing's.  But how do you address it without offending anyone?  I am a little shy, so I am not the kind of person to go up to a stranger and start a conversation.  Especially about their personal health.

My mom has given business cards with Cushing's information on them to people we think have Cushing's, but I have never been brave enough to walk up to a stranger and tell them they might have a horrible disease.

Although, I wish someone did that to me looking back, but at the time I probably would have been a little offended.

Would you consider going up to a stranger to tell them about Cushing's?

Cushing's Awareness Challenge - Day 18

What should you do if you think you have Cushing's?

1.  Click the 3 lines you see in the upper right corner, scroll down about halfway, and take a look at some of those helpful websites.  Those sites are what got me to the right endocrinologist, and helped me through the testing phase.

2. Make an appointment with one of the endocrinologists you find on those sites.

3.  Make a list of symptoms to bring with you to your appointment.  I also brought tons of photos, that showed me before Cushing's, so your doctor can see the progression.

4. Test like it's your full time job.  Midnight salivary cortisol tests every night, 24 hr urine free cortisol tests a few times a week, take as many lab orders and supplies as your endocrinologist will give you.

5.  Repeat until you get a diagnosis.  You may have to repeat this process with multiple endocrinologists.

6. Reach out for support!  To me, or on a Cushing's Facebook group, or even on a website's forums. (Where my support sy…

Cushing's Awareness Challenge - Day 17

Today is known as Marathon Monday here in Massachusetts.  A few of my friends are running the Boston Marathon today! I can't even imagine the level of fitness it takes to be able to run 26.2 miles. I know for sure it will never be something I will attempt to do!

I've talked about fitness in the past, and how I really never recovered (or gained, for that matter) any muscle tone after Cushing's.  One of the symptoms is muscle weakness, especially in your extremities.  I noticed this most when walking to class, which was uphill, or walking up and down stairs.  I have wanted to get more in shape, not really for looks but more for my general health, maybe it would be easier for me to do things.

I don't really enjoy physical activity, and never have.  I was always the slowest person when we had to run a mile in gym class, and never really felt athletic.  I have always liked to swim, but pools are hard to come by, and usually cost a lot to join.

I have been doing short yoga…

Cushing's Awareness Challenge - Day 16

Happy Easter everyone!

I spend a lot of my time with family.  Whether it's my mom, who I spend most of my free time with, or extended family, I typically enjoy spending time with family.

Today, about 30 members of that extended family are going to be getting together for Easter.  I do not celebrate Easter in the religious sense (although, typically it is a very religious holiday).  I have a hard time with faith.

My grandmother is a devout catholic, she even spent time in a convent as a teenager.  My mom was brought up in the Catholic Church, and I attended church regularly as a child.  I always had a hard time matching my love for science and faith, it seemed to me like the two things didn't really mesh well.  I stopped going to church when I was a teenager, and now don't go at all.

It is hard for me to justify that the things that have happened to me, like illness, were on purpose, or
"given" to me by some god.  I know lots of people who find faith in challeng…

Cushing's Awareness Challenge - Day 15

Cushing's is a beast.  I often say, I wouldn't wish it on my worst enemy. 
But, there are some things I would never trade, not even for perfect health.
1.  My Cushie Community - I belong to a lot of Facebook groups, some that are just for people who have had BLAs, some for anyone with Cushing's.  And I also have a few Cushing's friends that I see in person occasionally.  I don't know what I would do without them, healthy or not.
2.  The knowledge - before Cushing's made me very sick, I wanted to be a physician.  Always had, even when I was seven years old.  I have learned so much more about the human body, what it is really like to be a patient, and what it takes to be a good doctor, than I ever would have in a classroom.  I have joked, I am basically an endocrinologist, now I have to go backwards and learn the basics.
3. I feel like I have gained more compassion for others having gone through Cushing's.  I have learned what it's like to be bullied, tea…

Cushing's Awareness Challenge - Day 14

Hospital gowns, as I have said many, many times, are not fun to wear.  They can leave you exposed, they are typically too big, and are generally uncomfortable.  When I am staying in the hospital, I usually change into my own clothes as soon as possible.  I am still waiting for someone to re-design hospital gowns!

In the meantime, I am going to share what I usually pack, or have my family members bring to the hospital for me to wear.

I've already told you about footwear, and usually bring flip flops, no matter what the season.  They are easy to slip on and off, and can be easily washed when you get home.  My favorites are the these.

For tops, I love the Breathe tee's from Gap.  They are technically workout tops, but I wear them more as lounge wear.  I used to also wear them to work, with scrubs.  My favorite style is the v-neck tee.  They are super soft, stretchy, and breathable (obviously why they named them).  I love the solid colors, but my favorites are the striped ones,…

Cushing's Awareness Challenge - Day 13

Did you know other people are blogging for Cushing's Awareness this month?  This blogger needs your help!

Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of

Melissa has one of the most viewed Cushing's Blogs!  She is looking for your before and after photos to include in a video presentation about Cushing's.  Go help her out!

I take medication every single day to stay alive.  At 24 years old, it was one of my main complaints after my BLA.  Of course, I had taken medicine before that, even taken medication every day before that, but my life didn't depend on it.

I remember one of my first outings after my BLA, with my mom, sister, and brother.  We went apple picking.  I rarely carried a bag or purse at this time.  I had a toddler style meltdown when I realized I had to carry my bag with me.  It was less about the bag, more about this new consequence of the surgery that saved my life.

After a BLA, you are given prescriptions not only for your dai…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…

Cushing's Awareness Challenge - Day 11

There are a lot of expectations when you are finally treated or cured from Cushing's.  It can be harder than having Cushing's, or it might be a breeze.  Here's what I experienced after my BLA.
At first, I didn't feel well, slept a lot, and lost a little weight.
I experienced some heart problems within a few weeks of my BLA, and had to go back to the hospital twice.  This was pretty scary, but luckily it ended up being nothing serious.
I expected an overnight change, but I didn't really see or feel a positive change for about a year.  I even got a few comments from people saying "I'm so sorry the surgery didn't work!"  This was heartbreaking for me.  I really wanted to prove, more to myself, but definitely to my friends and family, that I wasn't crazy.  I felt that weight loss would finally prove that I was telling the truth, that I was sick.
Finally, a year after my BLA, I started losing weight rapidly.  I took myself off steroids (yes, I know…

Cushing's Awareness Challenge - Day 10

Medications to treat Cushing's is a newly expanding option.  When I was diagnosed with Cushing's, only about 7 years ago, these new medications were barely in trial phases.

I only tried a couple medications when I had Cushing's.  I tried to get into a clinical trial of mifepristone but was denied because my blood glucose was not high enough.  I didn't have many options outside of surgery or radiation.

These days, the medication options are endless.  Patients can be on medications from the moment they are diagnosed.  For patients with a failed first surgery, this is a great option to get some relief from symptoms before opting for another surgery.

One of the first medications I tried was cabergoline.  Typically, it is used for patients with prolactinomas (another kind of pituitary tumor), to help lower prolactin levels.  It has shown some success in Cushing's patients, but not to the same level.   I took this for about 3 months, had little risk, and I had no major s…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 8

Today is Harvey Cushing's Birthday - which means today is Cushing's Awareness Day! Harvey Cushing is one of the fathers of modern neurosurgery.  He studied brain tumors extensively.  You can read more about him here.

So, let's talk more about Cushing's.

Over the next few days, I will be writing about the different elements of Cushing's, like medications, surgeries, diagnosis, testing, and what to expect once you are treated.

Today, we are going to talk about diagnosis and testing.

For most patients, testing will include midnight salivary cortisol, 24 hour urine free cortisol, MRI, and for patients with a suspected pituitary source, inferior petrosal sinus sampling, otherwise known as IPSS.

For me, I only tested "high" on 24 hour urine free cortisol tests, which are exactly what it sounds like.  You pee into a jar for 24 hrs, then the lab measures the amount or cortisol excreted over that period of time.  I always liked to do these on days where I could m…

Cushing's Awareness Challenge - Day 7

As you can probably tell, I spend a lot of my time at doctor's offices and hospitals. I always try to plan ahead and download books, podcasts, and music onto my phone so I have things to do while commuting to and from, and while waiting.

I thought I would list a few of my recent favorites so you can give them a try!  I find they help the waiting go by faster, and make me feel like it wasn't a waste of time.

Podcasts

1. Serial - I'm obsessed! Unfortunately, they haven't released the 3rd season yet.  If you haven't listened to seasons 1 and 2, this should be at the top of your list!  If not, try S-Town, another podcast produced by the same people. (Although, I wouldn't recommend listening to either before bed - you won't be able to stop!)

2. Tara and Johnny - As in, Tara Lipinski and Johnny Weir, figure skating royalty.  This is a lighthearted, fun podcast about their lives.  I laugh out loud (literally) during almost every episode.  I love this for commuting…

Cushing's Awareness Challenge - Day 6

So, I've changed the name of this blog.  I've been thinking about it for a long time, and Life with Cushing's didn't really make sense anymore.  I don't have Cushing's at this time, and Life with Chronic Illness is a more accurate phrase to describe my life.  Of course, this doesn't change the fact that Cushing's is still a big part of my life, and will continue to be a big part of my blog.  
What do you think? 
Onto today's post for the Cushing's Awareness Challenge...
As you may have read over the last week or so, I had a PET scan scheduled for yesterday.  It didn't go as planned.  I had been having insurance issues, and waiting for special approval to change plans even though it was outside of the window to do that this year.  I called every day, waited on hold for up to an hour, and on Thursday, the approval came in.  Just in time.  Well, as usual, that was the end of my luck.
I arrived at MGH, and they started prepping me for the scan.…

Cushing's Awareness Challenge - Day 5

Social media dominates most people's lives these days.  You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.

You don't get to see the low points, the every day struggles.  You don't see what keeps them up at night with worry.

Everyone around me has a seemingly perfect life, they are traveling, getting job promotions, buying homes, dating, getting engaged, married, or having babies.  It is hard to scroll through and see all the things I thought I would be doing at this point in my life.

Instead,  I am applying for disability.  I am driving back and forth to doctor's appointments.  I am staying away from my grandmother because she is sick, and I can't get sick, not because it's an inconvenience, but because my life could be threatened by the flu.  I spend my nights awake worrying about money, or what could jeopardize my health further.

The majority of my posts on Facebook are "awareness"…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 3

One of my least favorite things about my life with chronic illness is having imaging appointments.  Whether it's my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful.
Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait. 
They almost always make you change, even if you follow their instructions on what to wear.  I almost always go into these appointments in a sports bra, t-shirt, and leggings or yoga pants with no metal.  9 times out of 10, they still make me change into a hospital gown.  I don't know about you, but I would feel much more comfortable in my own clothes.  A hospital gown is not the most comfortable, or flattering thing to wear.  
Next, sometimes you have t…

Cushing's Awareness Challenge - Day 2

A lot of people would think blogging about your personal health issues or disease would be too personal, and too revealing.  Why would someone want to reveal personal details about themselves online?

For me, it is not about giving all the dirty details.  It's about raising awareness, providing support to others with chronic illness, so they know they are not alone.  It's about the person reading this blog, that thinks they might have Cushing's, who might get help a little sooner than they would have without reading my story.  It's for friends and family, so they know what's going on in my life, with my health, without me having to tell the story over and over again.
It's been a little while since I gave a real life/health update, so I figured I would include that in this post.
As you might have read yesterday, I am having a PET scan on Monday. The hope is, we will either find a carcinoid tumor, or something along those lines that is responsible for some of the …

Cushing's Awareness Blogging Challenge

Yes, I'm doing it again!  I'm going to be blogging for 30 days in April for Cushing's awareness.  If you have any posts you want to see, or any ideas to get the word out about Cushing's, let me know.

Today, I'm going to be talking about my Cushing's story, which still continues, even 8 years after I was diagnosed.

I remember the moment I realized something wasn't right.  My mom was taking me to the mall, because none of my jeans fit me anymore.  She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn't want that for me.  But, I needed pants to wear to school, so I bought another size up.  I remember thinking, nothing has changed.  I didn't eat more, or less, I hadn't stopped any activities.  Maybe this was just my metabolism slowing down.

The summer before I went to college, I taught swimming lessons.  I was in the pool ever single day, swimming laps myself in between lessons.…