Life with Chronic Illness

Today, I am a guest blogger over at Five Hundred Pound Peep about weight, and how people treated me at 285lbs and now at 170lbs.  Go check it out!

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!

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…

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…

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…

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…

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…

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…

Today, please take a look at these images, after last week's devastating bombs at the Boston Marathon and explosion in West, Texas, THIS is definitely needed.

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 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…

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.�…

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…

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…

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…

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…

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.

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?

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?

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…

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…

My life as a girl with Cushings

My Life As A Cushie


Brain Tumors can make you Fat!
CushieBlog

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…

Today is Harvey Cushing's Birthday!  As you can probably gather from his name, he is the neurosurgeon that discovered Cushing's and developed a lot of the modern neurosurgery techniques still used today!

To read more about Harvey Cushing, visit Cushing Exhibit at Yale.

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…

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 …

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…

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…

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…

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…