Life with Chronic Illness

I don't have "whole body" pictures but I do have some to compare.  The first one you may have seen before, it was a few weeks before my adrenalectomy. The second was taken a few weeks ago (by me) to show my sister my new haircut.  I think you'll be able to see a difference!

When I agreed to blog 30 times in April, I didn't know how it would go or what impact it would have on me.  I blogged about some suggested topics, and some I made up myself, based on how I was feeling or an experience I couldn't stop thinking about.  The best thing about all of this, is it gave me confidence to post my weight on Facebook for hundreds of people to see.  The unexpected happened, when almost no one would comment on the bad things that happened, MANY MANY people commented when I posted I lost 100 lbs.  It was great, and of course, I cried. (I shouldn't have to say that anymore - if something good or not so good happens, just assume that I cried about it!)  I was overwhelmed with the support, from family, friends, old friends, people I went to high school with but haven't talked to since then, everyone.  I started wishing I could have that outpouring of love and support no matter what news I choose to share, whether bad and difficult to discuss, or somethin…

I have been pretty open about my weight since I started losing, but would've never imagined of telling ANYONE, not even my mom, when I weighed 285lbs. Now that I weigh less, I feel more confident and proud of how far I've come.  So, I am sharing a weight chart that I have kept since 2006, to keep track of the weight I was gaining, and rarely losing. (ignore the lighter purple lines, those were my weight loss goals.



For those wanting to analyze, my starting weight in 2002 was 226lbs, when I suspected I had Cushing's but was not diagnosed.  When I was diagnosed I was 253, in October 2009.  After my first surgery, you can see the drop right before 1/2010, then it went back up to 256 over the next 10 days.  The second surgery was 2/16/10, and my BLA was 9/2/10.  I took myself off steroids 9/25/11, and went back on a few weeks ago, but have seen no slowing down with my weight loss.  I try to record my weight once a week.  I think I only have 15-20 more pounds to go to reach my …

A few years ago, someone sent a website to me called But You Don't Look Sick.  It is a website made for  people with chronic illnesses, and it's claim to fame is something called The Spoon Theory.  It was written by Christine Miserandino about what it's like to face a chronic condition every day and how much energy it takes.  I have sent it to many people over the last few years that have had medical issues and I always hear how great it is.  One of my best friends asks from time to time if I have enough spoons when we're planning to get together.  That's the kind of friend you want!

Anyway, you should definitely read it, I'm thinking of getting a print of it to hang somewhere because sometimes I need to be reminded that it's ok to say no, and the people who love you should understand that.  Just a few weeks ago at Easter, I stayed at home (sleeping) until 6, when I could just stop by for an hour instead of spending the whole day with my family.

Even if you…

(For some reason, this photo has been REALLY popular with the Cushing's group...I bet you can guess why based on the plethora of blog posts about how much Cushing's sucks!)
Everyone has heard that life isn't fair.  I seem to get this lesson over and over and over again in my life. From being 285 pounds and the sickest I hope to ever be, to unsuccessful surgeries and getting into school and not being about to go, and of course being a medical mystery for the last few months.  I didn't ask for any of those things yet they were all put in my way for me to deal with them.  Yes, it has made me a stronger person.  Yes, maybe things happen for a reason.  That doesn't mean I smile through it every day.  
One of the other things that hit me like a ton of bricks was that I will never get to be a "normal" 26 year old.  I don't even know what normal is but I would guess it involves things like living somewhere that's not your mom's house, and having a jo…

Look at these pictures of dogs and horses with and without Cushing's!  Do you notice any similarities with humans that have Cushing's?

For many people with Cushing's it takes months, years, or even decades before finally getting a diagnosis and help.  For me, it was 5 years from when I thought I had Cushing's until my endocrinologist told me I did indeed, have Cushing's Disease.

Once you read about Cushing's and think it sounds just like you, here's what you will have to do to get rid of the excess ACTH or Cortisol source

1. Find a reputable endocrinologist that other people with Cushing's have had good luck with.  You can find a list on Cushing's Help HERE.  You can also ask someone that has been diagnosed on the Cushing's Help boards or on the Facebook group which doctors they see.

2. Make and appointment, and be patient!  Sometimes the endocrinologist has to do multiple tests over a period of time, and those results can take a while to come back.  Some tests to expect are 24 hr urine free cortisol tests, midnight salivary tests, dexamethasone suppression tests, or random/midnight se…

If I had a local friend that thought they had Cushing's and wanted me to talk to their family and friends about how they could best support their "Cushie", I would tell them to read a letter from the Cushing's Help website a few times.

The first time I read this letter, after my diagnosis of Cushing's Disease, it was like reading something that I had written.  The emotions were the same, and I had been trying to find these exact words that were written on the page.  I didn't write this letter, but whoever did sure did "get it".  I found out at the end that it was written by someone else with Cushing's, and someone that I would eventually get to know a little bit.

To read the letter, you can click here to go to the Cushing's Help website or scroll through it below.



Dear friends and family:
I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome and the recovery process so that you will have sufficient in…

Just a few months ago, I would do everything in my power just to avoid mirrors.  I hated the way I looked so I figured if I didn't have to look at myself maybe I would stop thinking about it.  I even turned my full length mirror around to face the wall at my apartment, and instead used the small bathroom mirror that only reflected from my shoulders up.  
I recently saw Frank Warren of PostSecret speak.  I have always been drawn to his website each week to see if any of the postcards mirrored what I felt.  After buying a few books of his, I took pictures of postcards that I could've written, and this one inspired this post.

I don't think I ever wished to be blind, but I did dread the mirror every day.  At work, instead of looking in the bathroom mirrors, I would look at my blurred and somewhat dimmed reflection in the elevator, just to avoid the real picture of what I looked like.
Now, I am getting more comfortable, and even enjoying the way clothes fit now, but I am still …

There is a big list of other people that have been affected by Cushing's that are blogging this month.

Please visit their blogs and read some of their posts from this month, everyone has a different perspective! I've enjoyed reading ladies!

Alicia http://alliwantisworldpeace.blogspot.com/

Amber http://amber-mulnix.blogspot.com/

Catherine (hypopituitary patient) http://wheniwasyou.wordpress.com/

Christina http://christinapay.blogspot.com/

Cristina (Portugese language) http://cristinagoncalves1973.blogspot.pt/

Cyndie http://mylifewithcushings.blogspot.com/

Daisy Using the comments area on the right sidebar at http://www.cushie.info/blog/

Dawn http://mrszebra.blogspot.com/

Grace C http://adayinthelifeofatrainwreck.blogspot.com/

Judy K http://judcol.blogspot.com/

Kay http://cushiemama.blogspot.com ‎

MaryO http://www.cushie.info/blog/

MelissaTX-CA http://cushingsmoxie.blogspot.com/

Missaf http://blogforacushiecure.blogspot.com/

This is a topic I've been trying to avoid since I started blogging every day.  I wrote about a similar subject, how my life trajectory has changed, but at least there were some positive things there.

What has Cushing's stolen from me?

Cushing's stole what little self esteem I had before this mess.  I have always been very self conscious and embarrassed about my body.  I felt like I was never thin enough.  I look back at pictures and now would give ANYTHING to look like I did when I thought I was fat.  I didn't know then how bad it would get.  At almost 300lbs before my BLA, I took a weekend away with one of my best friends.  While I was changing into my bathing suit in the hotel bathroom, I couldn't stop staring at my self - I had had no idea how big I was until I put that bathing suit on.  My thighs were huge and dimpled, my belly looked like I was nine months pregnant (I often pretended I was to people who would ask), and I felt awful.  I still feel like I have a …

Have you ever spoken in front of a group of people about Cushing's?  I'm preparing to go down to Florida, where a very good friend of mine is presenting her final project - ME!  She is in her last year of PA school and has asked me to go down for the presentation.

There are going to be a lot of obstacles to this trip.  First, it is only my second time flying alone and the first time didn't go very well.  Not only am I nervous about going through security with all of my medications (and long needles), but I also get extremely sick.  I usually take medication ahead of time and have had good luck in the past, but it didn't work out so well a few years ago flying from Boston to DC to Indianapolis.

Do you have any suggestions for me?  Are you ok when you fly or do you get nervous or sick like me?

I was fat, even considered "morbidly obese" at my highest weight.  As anyone reading this blog probably already knows that one of the most devastating symptoms of Cushing's is the dramatic and uncontrolled weight gain.

This article from the New York Times explains how the fat stigma affects people all over the world.  At my highest weight, I was 285lbs.  I had trouble walking short distances and turned down a lot of activities because I was worried about climbing stairs or walking while people were with me because of how difficult it was for me.  Now, I am 179lbs (yes, every pound counts now!), and have changed almost nothing about my eating habits (which aren't that great) or activity level, though I am slowly building my exercise tolerance.

I never got attention from guys while I was fat, and even my friends might have been embarrassed for me.  My college roommates would try to convince me to go for a walk with them or walk to class, but I usually drove alone.  I ha…

Melissa over at Cushing's Moxie recently posted the Pituitary Network Association's Patient Bill of Rights.  I first read this about a year ago on her blog, and I still look back at it from time to time.  It reminds me how I need to be treated by friends, family, coworkers, and doctors, and sometimes I don't hold people to these standards, especially at work.  You can find this over at Pituitary Network Association.



PREAMBLEThe 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 international network of…

Before my diagnosis, I was having a hard time just getting through a day. I couldn't bear to walk up a hill to classes (which my deteriorated leg muscles clearly couldn't do), sitting through a class and trying to concentrate, and not being able to do fun things like college students do. When I found out a pituitary tumor, I thought that the nightmare I was living would be over pretty fast.

I imagined that a tumor would be a sure sign that I did have this disease I had been campaigning for.  For the week between my MRI and my endocrine appointment, I was able to joke about my "brain tumor" with my roommates, I cried my eyes out to my academic advisor, but most of all, I was angry.  Angry that it took so long to get this clue, angry that I was actually right about my probable diagnosis, angry at everyone who doubted me or told me to go exercise more.

Going back and reading this post that I wrote just weeks after being diagnosed with Cushing's, I realized I still …

When you have Cushing's Disease, your entire diurnal rhythm gets flipped.   Today, after 3 surgeries, no more cortisol, and many nights later, I still don't sleep at night.  Today, for example, I went to sleep around 4 or 5am, and slept the day away, only to wake up around dinner time.  I have the luxury of sleeping whenever I can for the rest of my medical leave, except for appointments, which I try to schedule in the late afternoon.

As much as I have tried to stay up and get back on a more normal schedule, I can never do it.  I end up sleeping just for a few short hours before work, and "catching up" on weekends by sleeping 14 hrs at a time, which I have heard over and over again is not going to help.

Do you have any suggestions for me?  I go back to work in less than 3 weeks!

I can't imagine what my life would be like if I hadn't spent the last 7 or 8 years dealing with Cushing's.  It often hurts to think about (like now, there are already tears all over my keyboard just thinking of writing this post.)

If I never had Cushing's
- I might've done better in college.
- I would have graduated from UVM.
- I might be finishing medical school now!
- I would maybe be living on my own.
- Maybe I would've dated someone in college or in the years after
- Maybe my parents would still be together (I often think my "made up" disease affected my family more than I would like to admit)
-I DEFINITELY would not have as many scars or stretch marks!
-I would have struggled to learn about endocrinology, now I know the pituitary and adrenal glands like the back of my hand.
- I wouldn't have had the opportunity to go through such a debilitating disease and be proud of making it through.
- I wouldn't have been able to meet so many awful, a…

Yes, I scheduled this post for the wrong day and it didn't show up yesterday! Sorry for the delay.

What does having Cushing's Disease Cost?

Well, after going through my insurance claims for the 12 months that I had my 3 surgeries, it costs A LOT of money.  And that's only including office visits, procedures, hospital stays, and emergency room visits.  The number was in the hundreds of thousands of dollars.  Imagine getting this diagnosis without insurance?  You couldn't afford to be treated. Instead, you would continue to get sicker and sicker until your heart failed or you had a stroke.

In my case, I am still dealing with medical bills from procedures or lab work that's not covered by my insurance, emergency room visits, and just regular office copays from offices that didn't accept credit/debit cards.  Cushing's has cost me my financial independence, depending on my parents for a place to live, food to eat, and help with never ending bills.

I was out today and saw a girl that looked like she might have Cushing's.  I was trying to decide if I wanted or could say something to her, incase she has never heard of it.  My mom has done it before, just telling people to look it up, but I have never done it.  I'm afraid of offending someone, or getting emotional about it in front of a stranger.

I had an opportunity when she got in line behind me, but I was still having a hard time with it, and ended up not saying anything.  I know that many people with Cushing's that have no problem going up to strangers and giving them information but today, I just didn't have the guts.

What would you have done?  Have you ever approached a stranger about this or something else that could be uncomfortable?

Today a friend sent me this video. She doesn't have Cushing's but the emotions are the same. Thanks Jen!

http://well.blogs.nytimes.com/2012/04/03/life-interrupted-a-video-portrait-of-cancer-in-young-adulthood/

Today is Harvey Cushing's Birthday, therefore, today is Cushing's Awareness Day.

To learn more about Cushing's, watch this video made by an endocrinologist.



To watch Harvey Cushing in surgery, watch this:




Happy Cushing's Awareness Day!

I blog about my health because...

- It's a good way to keep track of my journey, it's nice to get to look back and see how far I've come - It's a nice way to keep family and friends informed without tears (yes, I still cry a lot) - It's a good outlet for anger, frustration, gratitude, grief, and joy - I am able to write better than I speak most of the time, especially about the tough stuff - Last, and most importantly, I want my experience to help someone else find a diagnosis, get through a tough time, or learn more about Cushing's, so maybe they can understand how crazy and awful this disease is, even though the name may be misleading.  

This was a busy week!  I had a pulmonary function test last Thursday and got results this week that my test was great and I do not have asthma.  (I already knew that!)  I also saw the allergist/immunologist today, and unless I have another episode, he does not think I have type 1 or 2 angioedema.  There is a type 3, but we will deal with that if it happens again.  Coming up, I have a barium swallow, which is an xray that shows how I swallow, and a sleep study to determine if my lingual tonsils need to come out.  On Monday I see my endocrinologist again.

I didn't feel well at all today.  I didn't sleep well (or much) last night and spent the entire day at the hospital or in the car.  Not so fun.  Hopefully tomorrow will be better, as I'm having a small, belated birthday celebration with some friends.  
I hope everyone has a nice weekend!  Other than my birthday dinner, I think I'll just take it easy and relax.

Being prepared for appointments is something anyone with a serious illness or chronic condition should do.  Through my experience with Cushing's, I have learned to look up my test results ahead of time and try to understand what they mean and what that means for treatment, medication adjustments, surgery plans, etc.  I also like to go to appointments with a list of questions I have for the doctor or things I want to discuss.  I sometimes just keep a running list on my phone so I won't have to sit down and think of all the issues or questions I've thought of since my last appointment.

 I sometimes write things down while I'm talking to the doctor so I can remember things I have to do before my next appointment or things to research more.  I can always request records of my visit incase I have unanswered questions.  Some hospitals have an online medical records system that you can log into and get certain instructions or test results, others you can call or email medical…

There's a link that's been making it's way around Facebook thanks to our wonderful Cushing's group.  If you haven't already, please click HERE to help raise money for Cushing's research through the new drug, Korlym, which blocks cortisol receptors to relive some symptoms of the excess cortisol produced in Cushing's.
Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help. With your support, we can aim even higher!* Take part...and spread the word.


http://cushingsawareness.korlym.com

Cushing's Awareness Challenge - Day 3

How I found out that I had Cushing's Disease

When I was 18, a freshman at UVM, I realized how sick I could get so easily.  The second week of school I was taken in an ambulance to the hospital with pneumonia, that year the weight starting to pile on, fast.  The next year I had two kidney stones and waiting months for an incision to heal from a mole removal.  This is when I started researching online.  Why was I, a previously healthy and active 19 year old, dealing with these issues that usually plague much older people and with kidney stones, mostly men?

I found my answer on Cushings-help.com.  I DEFINITELY had this rare disease.  It described my life - depression, trouble focusing on school work, weight gain, kidney stones, poor healing, etc. I told my friends I knew what was wrong and I immediately made appointments with my primary care doctor as well as an endocrinologist.

After 2 years of getting "nothing is wrong, just continue …

Cushing's Awareness Day Challenge Day 2!

Five Challenges and Five Small Victories

Challenges:
1. Taking medication every day
2. Working
3. Having energy to clean my room (and get rid of all my too big clothes)
4. Not crying (over everything....)
5. This month, blogging every day!

Victories:
1. Convincing everyone I'm fine without taking my daily steroids
2. Taking a medical leave from work so I will have time to go to all my appointments (9 in the past 2 weeks)
3. Losing weight...finally! My highest weight was 285lbs, now I'm down to 190.
4. Having clothes fit!
5.Sleeping.  Whenever I can fit it in, I'll take it.

Happy April Fools Day! No jokes here as I start the 30 day Cushing's Awareness Challenge of blogging every day in April.  These blogs will answer a series of questions suggested by www.cushings-help.org

10 things I couldn't live without...

1.  http://www.cushings-help.org for providing me with endless information about Cushing's that provided me with a diagnosis.
2.  My online support groups
3.  My kindle or iPhone to keep me occupied in waiting rooms
4.  My mom for letting me move in with her and for sacrificing her days off to come with me to       appointments
5.  My friends that stuck with me through all of this
6.  My brother, sister, grandmother, aunts, uncles, cousins and dad
7.  My BLOG!  For enabling me to share my story without tears ;)
8.  Salt, salt, salt.
9.  Being trusted to take myself off of my "essential to life" steroids.  I'm fine and finally losing weight.
10.  My endocrinologist! For trusting me to make my own decisions, for providing me …