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Less Than? Or Enough?

For the past few weeks, I have felt on the edge of tears, almost always.  I'm not sure why, but cried it out today in the shower.  It felt good, to be relieved of all the tears, but they didn't go away like I thought they would.  I'm definitely a crier.  I cry reading books, watching movies, seeing "mushy" commercials.  But this was different.  I'm with my favorite people on vacation, I don't have to work, I feel OK physically, I've been sleeping pretty well, I can't figure it out. 
I assumed hormone fluctuation, as always, but usually that comes and goes pretty quickly.  This has been at least 2 weeks, probably more.  Of course there are more stressors over the holidays, but we've settled into a routine.  Maybe I have Cushing's again.  Maybe my questionable rest tissue is working and giving me cortisol highs.  Maybe I'm feeling the lows after the highs.  Who knows.
The past few days, on vacation, as everyone is re-introducing themselv…

Vacation, all I've ever wanted!

The week I've been waiting for all year is finally HERE!  After 5 months, finally another vacation.  It seems like I'm off from work a lot, but most of the time it's medical leaves, or surgery recovery days. I rarely have enough sick time or money to take actual vacations.  New Year's in NH is another story. I haven't missed this trip for 5 years.  A few of those years, this week fell in the middle of a medical leave, other years I've managed to save a few days of vacation for this.  It's hard when my sick time rarely covers my sick days, but for some reason, I manage to get this week off almost every year.

I'm planning on reading a lot, I'm almost done with "The Fault In Our Stars" by John Greene, and have cried my way through it.  So far, I'm loving it.   I would like to go through "How To Be a Friend to a Friend Who's Sick" and finish my book reviews also.

I'm excited to relax, have fun with friends, and get some…

GuacaMOLE

I have a TON of moles, and have since I was a kid.  I have kind of neglected my dermatologist over the last few years, mostly because I have been busy at MGH with Cushing's and parathyroid tumors and MEN-1 stuff.

I finally made an appointment, and got in fast due to a cancellation.  A few spots that I had concerns about were no worry to here, but I did have a few small spots that were pretty dark, so she decided to biopsy a newer one.  It came back with abnormal cells so the area around it will have to be removed.  My dermatologist had to reschedule so I'll have that done in January.  I have about 10 other spots like this one, that will all have to go at some point.  My endocrinologist thinks that these new ones might be due to high ACTH, but they wouldn't be abnormal if that was the case.  I am definitely noticing more and more moles/freckles in the last year or two, and I am generally careful about my sun exposure, but absolutely let it slip this past summer, and was in …

Cushing's Surgery FAQs

I get a lot of questions about my surgeries, some general questions, some come from Cushing's patients themselves.  I don't think I've ever gone into a ton of details before, so here it comes.  
Cushing's Specific Questions:
Pituitary Surgery
Q:  Did they find the tumor easily?  Why did you have 2 surgeries?
A:  I had a clearly marked tumor on my pituitary MRI (see below), but no, they did not find a tumor at all.  I had a second surgery to remove the half of my pituitary gland where the tumor was.


Q:  Did you feel any different after pituitary surgery? 
A:  After my first surgery, I felt immediately like I didn't have Cushing's Disease anymore.  I felt less swollen, and generally deflated.  After the second surgery, I felt the same going in as I did coming out. 
Q:  What medications did you have to take post-surgery?
A:  The only medication I had to take was dexamethasone.  It's a high dose steroid, that I took for a few weeks after surgery to make sure I …

4 Years of Cushie Life

So, I sort of missed the actual day, November 9th, but it's been 4 years since my diagnosis, and almost 4 years since my first surgery.  After years of doctor's appointments, testing, a lot of weight gained, many tears, and breakdowns, I finally was diagnosed with Cushing's Disease.  I remember almost canceling the appointment before, because I had chickened out during my MRI, but when I called, the secretary said no way, keep the appointment.  I had seen the MD, not the fellow the appointment before, and had done more testing than ever, and was on a strict diet.  My mom was with me, and I finally heard the words "You have Cushing's Disease".  You can read about that moment here.

It's a hard thing to explain to most people, most people are devastated when they are diagnosed with such a serious, life threatening disease.  For most people with Cushing's, the diagnosis is a long time coming.  Most of us have seen many doctors, tested for years, and alrea…

Another Stroke?

Unfortunately, I left work in an ambulance today.  I was answering phones and started to get confused, and I had not eaten lunch yet. I took few breaks from my desk thinking I was just overtired but nothing was helping.  I walked to the back of the department and then it goes blank.  I remember one of the nurses feeding me ginger ale, and another nurse taking my vitals and calling for a doctor. My boss called my parents and the ambulance, assuming I was having a stroke. Of course, the EMTs took me out the main entrance of the building, allowing patients and coworkers to see me crying and not at my best.  I know there was mention of taking me to Mass General, but due to the severity of my symptoms, I went to a closer hospital.
My last experience with a stroke-like event was much more chaotic.  I was taken to MGH and was met outside by a stroke team.  I had tPa, and stayed in the neurology ICU.
This time, no one was in a hurry, I had a slow heart rate, one of my arms was weak and tingly…

Long Overdue Update

August, September, and now October have been so busy!  I have been spending most of my time away from work with Huck, which has been clearly very time consuming.  He is growing so big and learning  how to behave.  Just tonight, he was playing with us in the living room and was standing on the couch waiting for a toy to be thrown.  I asked him to sit and he backed up so his bottom was against the back of the couch, but obviously still standing.  I asked him to sit again and he looked at me like I was nuts, he clearly doesn't understand that his bottom being on something is not exactly what we mean by sit.

He has already been to the vet emergency room, for a shoulder injury, and we have had to call the vet multiple times.  Huck seems to be accident prone already, he clearly takes after his human mom.

I have had a few more kidney stones, which are less than pleasant, and am still having weekly allergy shots.  I have an endocrine appointment coming up at the end of October, and have …

First 2 Weeks with Huck!

Huck the mini labradoodle has officially joined our family.  He has been such a good dog, very calm, very loving.  He loves to just sit on my lap, and already knows how to play fetch. He loves to play at my grandmother's house with her big yard, and has been to the beach a few times too.  Here are some pictures of our first 2 weeks!
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Mini Vacation to MV

From Thursday to Monday, I was visiting my Aunt's house in Martha's Vineyard with a few friends.  I had a great time, and wanted to share some pictures with you!









We saw 2 sunsets, got a few items off MV bucket lists (backdoor donuts being one, and no, it's not as dirty as it sounds).  We went to the beach almost every day, and I got some great color by accident (I used some expired sunscreen).  I got to swim almost every day, one day we even swam way out to a sand bar, and back in.  A lot of exercise!  I even managed to sneak in some water aerobics exercises. All in all, it was a great trip.  The only thing I didn't do that I wanted to was pick up a black dog collar or leash for Huck, who is coming home on Saturday!  I expect my blog to be flooded with puppy pictures over the next few weeks!

Guess Who's Coming Home Next Week?

HUCK!


Any suggestions for me?  I can't wait!!! Many more pictures to come soon!

Mood Swings

It's official - the Cushing's mood swings are definitely back.  I have cried for no reason, I've been mad at my family for no reason, and I just am having a hard time dealing with people.  The last time my emotions were this unpredictable was right after my second pituitary surgery, which seemed to make my Cushing's symptoms worse.  In just a few weeks after that surgery, I gained almost 20 lbs.  I haven't seen the rapid weight gain yet, but I have had flushed cheeks and a red spot under my chin, acne, darkening of scars and stretch marks, worsening insomnia, curlier hair, and of course, the mood swings.

I have one more 24 hr urine to do, I am going to try to do that on Sunday while I am still having all of these symptoms, and hopefully those results will show what I already know, that Cushing's is back once again.  I feel like after 3 surgeries, 2 that were not successful, and the 3rd which helped relieve all of my symptoms for almost 2 years, this is the har…

Doctors That Become Patients Themselves

I recently read a great entry that was written by a medical student, who thought she understood what being ill felt like, until she fell ill herself.  I'm sure most people understand that it sucks to have a cold, but don't realized the debilitating effects it has on someone who is chronically ill.  I do not remember what "well" feels like.  I can't remember the feeling of being able to walk or run up a staircase without holding on for dear life to the railing.  I don't remember being able to relate to normal people who aren't ill.  I wish I could say I remember what being well feels like, and that's what I'm aiming for, but all my mind can grasp is how hard the walk to work from the parking lot is that early in the morning, and how hard it is to shift my weight back to my feet after a long drive, and how exhausted I am at all times, despite sleeping until 3 in the afternoon some days.

This article was very validating to read, as someone who sits …

Genetics Appointment

I was trying to wait for results before sharing the details of my genetics appointment, but after reading a summary of my appointment that was sent to me in the mail, I thought I should just put it out there.

My genetics consultation was about 3 weeks ago.  Before going in, there was no doubt in my mind that multiple endocrine neoplasia type 1 (aka MEN-1) was what I had.  I had 2 out of 3 main tumor sites, and all signs pointed towards it.  After going back and forth between two offices trying to check in, they finally called us in.  My mom came with me, mostly because it was her day off but it's always nice to have a second pair of ears.

Based on my medical history and family history, they were pretty confident that genetic screening would be useful, because it doesn't really seem like I have a telling family history to figure out where this came from.  They talked about my new symptoms of low blood sugar, severe reflux, and never ending kidney stones.  They were a little su…

How to Help a Sick Friend

As I sit in bed tonight, wishing I could really sleep for the first time in over a week, I was flipping through my newly opened issue of allure magazine.  I try to save these silly magazines for moments like this - in waiting rooms, when you can't focus on a book, or before bed, where anything too exciting will just make me wide awake again.  A short article caught my eye - "How to Help a Sick Friend", an interview of Letty Cottin Pogrebin, the author of "How to Be a Friend to a Friend Who's Sick".  The article was fine, short and sweet, and did contain some helpful, but pretty obvious tips, like listen carefully, and stop by, but I am hoping for the book to be a little more substantial and helpful for people wondering what to do in a tough situation.

Through the years, as I have struggled through tough diseases, surgeries, and now a lifetime of surgeries and tumors ahead of me, I have seen friends walk away, not know how to act, and I lie on a daily basis …

Happy Mother's Day!

Over the last few years, through all of my heath struggles, my mom and grandmother have been there for me more than anyone else.  My mom has been to almost every doctors appointment, and spends days at the ER with me.  She is the one to I usually go to when I need to cry (which it often), or share happy news (which is rare these days).  I don't know what I would do without her!

Happy Mother's Day, Mom!





Is This Real Life?

Have you ever seen that YouTube video where the kid just had dental work, and is asking, "is this real life?"  That's what I'm asking myself right now.  I am considering getting a second opinion on all of this new stuff.  New tumors usually mean surgery, but I'm having to jump through hoops with specialists to get everyones opinion before we can do anything.  I also feel like I'm doing all the work here.  I am gathering all the information that I need to go into appointments educated, so I don't have to rely on someone to remember to explain what is happening, I'm scheduling appointments and calling back 10 times to make sure they are on top of a referral or letter.  I also keep track of which parent can come to which appointments, based on work schedules and general availability.  (That part is OK, the rest is not.)

I've gotten to a point where I don't fully trust anyone with my care.  So I put myself into the position of educator, patient a…

Missed Milestones

When you are a baby, everything is measured in terms of milestones.  First word, rolling over, crawling, walking, talking.  When you are an adult, going to college, getting a job, getting married, and having babies are all common and important milestones. Will I ever get to do some of these things?

Tonight, I saw some family that I hadn't seen in a while.  We were all sitting around at my grandmother's house and the conversation shifted from silly jokes to talking about weddings, graduations, and new love.  When these "milestone" topics come up, I find myself partially wanting to hear all the details, because these are all people I care about and love, but part of me just can't bear to hear it.  It's just too hard to think about all of these things that I have not yet done, and may never be able to do.

As the years have gone by while I have been dealing with Cushing's, Cushing's and more Cushing's, more of my family and friends around my age have …

We Made It!

Today is the LAST DAY of  the Cushing's Awareness Blog Challenge!  We made it!  What was your favorite post this month?  The post I was most proud of was Dating with a Chronic Illness.  I also liked the 10 Things posts here and here.

What have you learned about Cushing's?  Please share!

I enjoyed this month as much, maybe more than I did last year.  I'm glad to have all of you along for the ride!

Service Dogs

Have you ever looked into service dogs or do you have one?  I'm starting to look into it after a conversation I had recently.  I've had it in the back of my mind for a while, but never thought seriously about it.  I have looked at service dog websites, but they usually list just a few conditions that they will train dogs for.  Those conditions vary slightly from site to site but usually include hearing impairment, visual impairment, seizure disorder, PTSD, and autism.  The Americans with Disabilities Act or ADA states that a service dog is any dog that is trained to provide a task for a person that has a disability covered under the ADA.

I may qualify to get a service dog, but if not, I will get a companion dog.  I think I need someone or something to take care of, and could use some help taking care of me emotionally.  I've also always wanted another dog ever since my childhood dog died before I went to college.

What do you think about pets or service animals for disabl…

10 Things You Need for a Hospital Stay

1. Your own comfortable clothes - I prefer boxer shorts and a tank, even if it's winter to allow easy IV and EKG access.

2. Purell for your room - most of the antibacterial dispensers are outside of patient rooms, so I like to have my own for visitors or when I can't get up to wash my hands.

3. Soft tissues - especially after pituitary surgery!  The hospital tissues are so scratchy.

4. Lip Balm - again, good for after pituitary surgery with all that mouth breathing.

5. Hard Candy - for the same reason as lip balm.  It will also help when they are restricting your fluid intake to keep your mouth moist.

6. A blanket from home - to cozy up with if your room is extra air conditioned.

7. Toothbrush and toothpaste - the hospital can give you toiletries which will do, but the tooth brushes are usually flimsy and useless.  Bring your own.

8. Netflix - if you don't have it, get a free trial for when you'll be in the hospital.  You can watch movies and TV shows on your laptop, p…

Is Cushing's as Rare as the Statistics Say it is?

From what I understand from the support groups, message boards, websites, etc., most people fight for a Cushing's diagnosis for years before they are actually diagnosed by a doctor.  For this reason, along with how hard it is to test for Cushing's and get accurate results, I think the amount of people who have Cushing's is greatly underestimated.  
Almost 36% of American adults are obese. I'm sure more than 1 in 100,000 people may have Cushing's.  I see people all the time on the street that have the obvious Cushing's body type - normal sized arms and legs, bigger torso, with disproportionately fat face.  Once you know what you're looking for, it's easy to spot.  Not all of these people have Cushing's, but I would bet that half of them do, and just don't know it.  Because Cushing's is hard to diagnose, especially with the obesity epidemic in America, if you go to the doctor complaining of weight gain, they will immediately tell you to diet a…

The End of Dance, Beginning of Cushing's?

I used to dance.  For my whole childhood I was enrolled in dance classes.  I loved to dance, even though I wasn't that great, it was the only activity that I enjoyed.  I tried playing soccer, and always went back every now and then but I was not into running, and one time cried in the middle of the field because my coach yelled at me.  (He didn't actually yell AT me, he was yelling so I could hear his directions!)

When I was 13, I was FINALLY old enough to go on a trip to New York City with the dance studio.  My mom was coming as a chaperone, and 3 of my best friends were staying in the room with me.  We had a fun night when we got there, we saw a show and went out for dinner, and the next morning, my little dance dream came tumbling down.  I realize now that the criticism from my teacher that morning probably came from frustration, having to organize this huge group, and partly because of Cushing's.  I started having symptoms around 13, which probably threw my whole body…

Overwhelmed, Big Time

Have you ever been so overwhelmed that the only thing you can do is cry? I am now 185lbs.  30 pounds up from my lowest weight post-BLA.  I know that I have Cushing's again, and I'm in a horrible cycle of losing and gaining weight.  I am overwhelmed by this possibility, and just don't know how to handle it.  Every time I have known something's off, I knew exactly what it was, and have been right each time.  I'm doubting myself, thinking maybe it's what I'm eating, but I know it's not.  Maybe it's because I'm not exercising enough, but I never have been very active, due to my weak muscles and bones.

I am also overwhelmed by my new diagnoses of Multiple Endocrine Neoplasia type 1.  It means countless surgeries - the pamphlet I got said that one particular patient that has a foundation has had 28 surgeries including a total pancreatectomy, giving her surgical diabetes.  I already have had a pituitary tumor and a parathyroid tumor, and I just want th…

Do You Have Allergies?

I have always had allergies, seasonal mostly, but usually could deal with them by taking antihistamines. Last spring, I had a severe case of allergic conjunctivitis, and had to have steroid eye drops twice.  As it turned out, I was allergic to the OTC allergy eye drops.  I think my allergies really ramped up after Cushing's.  The steroid exposure in Cushing's can really suppress things like allergies.

I ended up having allergy testing and found out for sure that I was mostly allergic to cats, dogs, mold, and dust.  I did all the steps they told me, including getting a new rug downstairs because our old wool rug shed like crazy.  I went back to the allergist today because I am consistently congested, blowing my nose, and using allergy eye drops no matter what the season.  Apparently cat allergies are pretty much the worst to have because it's a light and sticky allergen, meaning it goes EVERYWHERE.  If I was around someone with a cat, and they had cat dander on their clothe…

My Dream Day

A dream day for me would be one without medications, without being exhausted despite 10 hours of sleep, without the fear of falling down and breaking bones, or catching a nasty stomach bug at work.  A dream day would be one without scars, emotional of physical, a day without dizzy showers in the morning.  A dream day spent with my favorite people, all together.  I would have no anxiety about anything, and I would be able to enjoy myself without worries.

What would your dream day be? Let me know in the comments!

I Write About My Health Because..

- I want to have a record someday to look back on the challenges I have overcome, and the amazing things I have been able to accomplish despite having a debilitating illness and a life threatening disease.

-I originally starting writing because I wanted my family and friends to be updated about surgeries and progress during my diagnosis and treatment.  It was too emotionally difficult for me to tell people over and over again what happened at my appointment, so blogging and writing it all down was easier for me.

- I think pituitary diseases are important and often overlooked, and definitely underestimated.  I wanted people to know that it isn't a small deal, it's a HUGE deal that many people don't survive.

-I think Cushing's is under diagnosed and I wanted to help people that may have Cushing's but never knew it existed.

-For people with Cushing's, either newly diagnosed, searching for a diagnosis, or post-Cushing's.  I want them to have a story that they c…

Day Trips

Because I spend most of my vacation time at work in the hospital, going to appointments, or having surgery, I have very few vacation days that are actually a vacation.  When I was in High School, I started an annual trip to Martha's Vineyard with friends and we'd all stay at my aunt's house.  From 2004-2010, I did this every year.  The past two years have been busy and I haven't had the foresight to reserve a weekend at the house, but hopefully this year or next we can start this tradition up again.

It's usually a weekend of fun times with friends, revealing secrets, and a getaway from work, school, and health problems.  Tomorrow, because I spent all day today resting, my mom and I are going to take a day trip to the Vineyard to visit my Aunt!  I love getting on that ferry, and no matter how cold it is, I have to sit outside or else I won't feel too great.  It's like a whole different world, even though the trip from door to door is only about 90 minutes.�…

Nightmares, While You're Sleeping and in Real Life

When I had Cushing's, my dreams were so vivid.  When I had a nightmare, I would wake up sweaty and tearful, like something had actually happened to me.  I thought I was done with nightmares, but this week, with all the chaos and tragedy surrounding the Boston Marathon Bombings, including a manhunt that lasted about 24 hours, I was having sleepless nights, and living basically in a nightmare.  I watched on Monday as the blasts happened, from my living room couch, commenting on the military presence right before the first bomb went off.  I sat in shock watching all of these great people run towards the bomb to help the victims, and wondered if any of the helpers or victims were people I knew.
Last night, as the suspects went on a rampage through Cambridge and Watertown, I sat awake in my bed glued to twitter to find out what was happening.  Today, I went to work, and every time someone that looked even remotely like the suspects rounded the corner, my heart raced.  Tonight, just aft…

Back to School?

Cushing's, as you may know, destroys your entire body.  You may know most of the visible symptoms, but did you know that Cushing's can also cause memory loss?  I was in college when I had the most visible symptoms, and suddenly was getting all C's instead of the usually A's and B's.  I had a hard time studying for tests, and tried ADD medications like Adderall and Concerta to see if that would help.  Years later, as I was diagnosed and treated, I read this study, that suggested the reason young people with Cushing's don't do well in school was because of short term memory loss.

Obviously, I remembered the big stuff.  What I did yesterday, who my friends were, etc., but the less important things, like what I read in my biology book or what I studied the night before disappeared.  I failed tests, couldn't remember readings, and had a hard time writing up labs, because I couldn't retain information!  This was not so obvious at the time, I only realize…

Stress Dosing Do's and Don'ts

Because I have no adrenal glands, sometimes I have to do what is called "stress dosing", which means taking more steroids or giving myself a steroid injection when my body is under stress.  Stress to my body can be an illness, an injury, like a car accident, or emotional stress, like dealing with a death or something similar.

Most of the time, a few extra hydrocortisone pills are enough, but sometimes, an injection is needed.

DO stress dose even if you're not sure if you need to.  Too much steroid will just make you swollen.  To little and you could die or end up in the hospital.

DO tell someone if you don't feel well.  Sometimes you don't have the best judgement when you don't feel well.

DO carry extra supplies, just in case.

DON'T assume people will know what to do or read your medic alert bracelet.  DO tell people around you how to give an injection and who to call for help.

DO carry information about your condition and who to call in case of emergenc…

Stylish Hospital Wear, Does it Exist?

After talking to a friend this evening, something got me thinking.  He had met someone that was inspired by a sick relative to create more patient friendly, less humiliating items for people that may not be able to care for themselves.  When allowed, I usually wear my own clothes in the hospital.  That might consist of yoga pants and a t-shirt, or even boxer shorts and a tank.  Unless required, I get out of those hospital gowns as fast as I can.  Not only are they uncomfortable, strangling you every time you move, but they are less than modest, and require you to basically be totally naked if someone has to feel your stomach or listen for bowel sounds.  They are also re-used and usually a gigantic one size fits all.

I have seen hospital gowns that you can buy when you're having a baby, to look more stylish for your guests, like this, but why just for labor and delivery?  Why not for anyone who has to be in the hospital?  And this begs the question - when the heck is someone going…

Boston Marathon Bombings

I'm going to take a day off from blogging, and instead ask all of you to please send good thoughts and prayers to Boston.  I live about 40 minutes south of Boston, and have been following the news all afternoon.  These bombings are heartbreaking and devastating for the city, and for such a wonderful event.  Stay safe out there.

Weekends

Referring back to my last post about sleep, I am the kind of person who uses my weekends and days off to rest.  A lot of people like to do as much as they can, to either get things done, or do something fun.  This weekend, and most weekends, I like to sleep late, catch up on my DVRed shows, and maybe watch a movie, read, or work on school work.

Once in a while, I will go away for a weekend or have a lot planned, and by the time I have to go to work Monday morning, I'm exhausted.  I tend to space busy weekends out so I don't get too run down.

What do you like to do on weekends?  Do you like to sleep late and relax?  Or do as much as you can while you have the time off?

Sleep, Sleep, and More Sleep

Since I learned to sleep in around age 10, I have been sleeping late every weekend and any day I can.  I am such a night owl, and Cushing's made that even worse.  When you have Cushing's, the excess cortisol production throws off your circadian rhythm and your body gets confused and doesn't know when it's time to sleep and time to be awake.  Most people with Cushing's get their best sleep between 7am and 3pm, and I fell right into that schedule a few years ago.  Now, I have to get up at some point before 3pm most days, but I will stay up until 1 or 2am, even if I'm exhausted and want to sleep before that.  On weekends, I go to sleep around 2am, and sleep until noon.  During the week, I have a hard time sleeping because I'm worried about waking up on time or sleeping through my alarm.

Do you have a hard time sleeping?  Are you the kind of person who only needs a few hours of sleep or do you like to get at least 8 hours a night?

Cushing's Reoccurrence

A lot of people that have Cushing's Disease are cured after one pituitary surgery to remove the adenoma.  Some have to have another pituitary surgery, fewer have radiation after the second pituitary surgery, and even fewer end up having a bilateral adrenalectomy (BLA).  A BLA is considered a final cure, theoretically you can never have Cushing's again because the source of cortisol production is removed.

Unfortunately, I don't think this is the case for me, and a few others.  Over the last few months, I have been either gaining weight slowly or fluctuating rapidly between weight loss and weight gain.  This hasn't happened to me since my BLA, and along with the reappearance of some other symptoms including insomnia, buffalo hump, and all of my scars and stretch marks turning red or dark again,  I think it's back.

In a small number of cases, there can be cells of adrenal tissue that are left over after a BLA, which can grow and reproduce and cause cortisol producti…

How Do You Explain what it's Like to Live with a Chronic Illness?

Do you ever wonder if you have it in you to get through a crazy week?  I had planned to catch up on sleep and reschedule a few appointments for this week, but instead, a few coworkers have been out and I ended up working all 5 days this week instead of my usual 3 days.  Each day has been crazy because of our limited staff.  I am so ready for tomorrow night and for this week to be OVER.

On days like this, when I can barely stay awake after work, I wonder how people that work full time do it.  I mean, it's a normal thing to work 40+ hrs a week, right?  Why can I barely handle 24, even when to everyone else, it seems like I'm doing really well and it wouldn't be a big deal to work another 16 hours a week.

I recently saw a friend of mine, who has different issues, but has the same issues of wondering how to fit everything into what seems like a very tiring, jam packed week already.  I shared my holy grail explanation for what it's like to live with a chronic illness...




THE…

Dating with a Chronic Illness

I'm 27.  A lot of my friends are married, engaged, having kids, let alone dating.  Dating was done ages ago when people were in high school and college.  For the past 7 years, I have either been sick, been busy trying not to get sicker, or just plain old unattractive because of Cushing's.  
I'm 27 as of March 26, and I'm just now starting to think about dating.  I'm not really sure how to go about it, and I feel old to be doing this now, especially in the small town I live in where everyone knows your business.  I don't know a whole lot of people, and even if I did meet someone, when do you bring up that you have this crazy disease that will follow you around your whole life?  I don't want anyone to be looking at my scars or seeing the extra skin from all the weight I've gained and lost.  When do you bring up the fact that since you have this other genetic illness, you don't want biological children?  How do you even approach that subject?  The easi…

Word Cloud

Happy Weekend!

Weekends are my favorite.  I get to sleep late, take a break from work and appointments, and spend time with friends and family.  Last night, I got to see some friends at a fundraiser for an organization that has given me my greatest support system and the best friends I could ever ask for. 
I have nothing planned for today, I just want to catch up on some TV shows.  My mom is away this weekend, so I am going to order pizza tonight and just hang out, maybe watch a movie. I may even go for a swim at the gym.  The pool is in a bubble now, but I can't wait for them to take the bubble down so I can swim in the sun!
What is your favorite thing to do on weekends?  Are you the kind of person that likes to rest and take it easy on the weekends or cram in as much as you can to stay busy?
Here are a few things to check out over the weekend:
Lauren's Hope for the cutest medical alert bracelets ever - everyone always comments on mine and asks where I got it!  



TouchOfModern for the coolest…

Pituitary Patients Bill of Rights

I have posted this many times, but only because I think it is so important and different points come up over and over again as I continue to struggle with my health.  I have this posted on my bulletin board at work, it is a helpful reminder of the things I have the right to expect, and reminds me not to walk away when there is something I need to fight for.  The second to last point has always made me cry every time I read it - it's that powerful.  To learn more about the Pituitary Network Association, click on the link below.

What do you go back to over and over again?  Is there something that means so much to you that you share it every chance you get?  How do you react to this?
PATIENTS 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 …

10 Things I Couldn't Live Without

Aside from family, friends, water, food, shelter, etc., here are the 10 things I would have a very hard time living without.

1.  My Laptop      I use my laptop to blog, chat with my online support group, and keep in touch with friends I don't see often enough.
2.  My iPhone      I use my iPhone for many of the things above, as well as looking up medication interactions on the go, reading or playing games while I wait for appointments, keeping track of blog ideas, and taking pictures. 
3.  Retractable pens      I refuse to use anything else if I can avoid it.  I click away my anxiety throughout the day.  My coworkers appreciate the "silent" retractable pens, like Zebra or Bic Atlantis brands.
4. Books     Either on my Kindle or actual books, to read on the go, in waiting rooms, or when I can't fall asleep. I end up reading more than one book at a time usually.
5. Blackout Curtains/Shades     When I can't sleep at night, I can sleep through the day with these.
6. G…

Appointment Update!

Yesterday I had 2 appointments at MGH and Mass Eye and Ear.  I saw ENT first at MEEI for my vocal cord dysfunction and my huge lingual tonsils. My favorite part of going to that office is the view -  the windows face south west and you can see the entire city of Boston past the Charles River.  The ENT was glad I haven't had any significant vocal cord issues and didn't even scope me!  I hate those scopes - they go up my nose and down my throat and cause serious gagging.  I don't have to go back to that office until October!
I spent some time in between appointments at Starbucks with a passion tea lemonade and a chocolate chip cookie, then headed back to MGH.
I saw the urologist next, to talk about kidney stones, parathyroid levels, and a 24 hr urine test.  Everything checked out ok there, and unless I have any major issues, I will see her in a year after another renal ultrasound.
Overall, a good appointment day, minus the traffic in and out of Boston.  
Which appointments d…

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge 2013 - Day 1

Before, With, and After Cushing's


Before Cushing's, I was a relatively happy, active, heathy kid.


As I started to have symptoms of Cushing's in High School, I started to have a fuller face- but notice, my legs and arms stayed the same.


With full blown Cushing's Disease, my whole body expanded, but my legs and arms stayed relatively the same.  I had a huge tummy, and my hair was frizzy and curly.






After 2 pituitary surgeries, a bilateral adrenalectomy, and a year (or more) of weight loss, this is what I look like Cushing's free!




Big difference, right?  Cushing's destroyed my body, I still like to wear a tight tank top or spanx under clothes so you can't see the extra skin through my clothes.  Granted, that's such an easy fix and no one would know if I didn't tell you!  It feels so good to look "normal" again.

If you're curious, I wear this tank top from Assets by Spanx almost every day - it does a good job at pretending to be a normal t…

Another Birthday, Another Year Sick

I turn 27 on Tuesday.  That is the age that my mom was when I was born.  I am now half her age.  By this time in her life, she had her dream job, a house, a husband, and a new baby.  I have spent the last 10 years sick, and those things seem like a lifetime away, and may never happen for me.  Don't most people look back at the past year and think of how happy they are to be where they are today?  I have another diagnosis to think about, surgery coming up at some point soon, lots of appointments, and I'm dreading all of that.

I try to do some happy things each year for my birthday, but the last 4 I have spent in the hospital or just getting out of the hospital.   Pneumonia (x2), uncontrolled bleeding that warranted a day in the ER for monitoring and possible blood transfusion, and last year, I couldn't even look at food despite being pretty healthy, at least compared to the past few years.

This year, yes, I am still sick, but hopefully no drastic issues or illnesses come to…