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Showing posts from 2012

Holidays and a potentially scary new diagnosis in the DSM-5

Christmas and Hanukah are over but New Year's Eve and day are still to come!  I worked Christmas Eve and Christmas Day but had Christmas Eve and most of the day with my mom and siblings and Christmas night with my dad.

I got a present I've been wanting for a while from my brother and sister - a Clarisonic!  I can already feel a difference in my skin, it seems so much cleaner.  I got new black boots, a new sweater, some more skin care things,fleece lined leggings (something I was extra excited about given my lack of body fat this winter) and pajama pants.  I am relieved that Christmas is over, every year it is stressful due to my divorced parents and my work schedule.

For NYE, I usually go up to NH with some friends.  I happened to get sick right around Christmas this year so I was hoping I would be well enough to go.  I love sitting by the fire and seeing the snow, and being with such great friends that have supported me through the last few years of bad health.  

Something …

Clothing Sizes

For a long time when I had Cushing's, I was afraid to "go up a size" in anything, instead squeezing into clothes that were probably too small.  I refused to shop at plus size only stores, thinking it meant "giving in" in some way.  I wore stretchy yoga pants and hooded sweatshirts to hide the hump on my back and my bulging belly, but prove that my legs were still normal sized. Towards the end, I found that maternity clothes offered the best fit, and stocked up on jeans and tops that were comfortable to wear AND looked ok.  Sometimes, when shopping in a store instead of online, and was asked about my pregnancy, I lied because it was easier than explaining a brain tumor that cruelly, would take away any natural ability to GET pregnant in the first place.

Now, when I shop, I tend to make a big deal out of it in my head.  It's almost an accomplishment, that I lived through Cushing's and now can go back to buying normal sized clothes.  Recently, I was able …

Allergic Reaction? Bleeding Disorder?

I had ANOTHER kidney stone on Friday.  It started while I was at work, and I was trying to wait as long as possible to leave, thinking maybe it was just the way I was sitting, so I did a few laps around the department and when things began to get worse, I decided to call my mom and meet her at the ER.  When I got there, they asked about my medical history, which is usually not a great thing to do.  As soon as the nurse heard my list, she brought me right back to a trauma room so they didn't have to wait to get me hooked up to an IV and some pain meds.

The nurse was the same one I had when I had my Last Kidney Stone, it's always nice to see a familiar face when you are in pain!  I got IV antibiotics, pain meds, and went on home.

Saturday, I caught a glimpse of myself in the mirror and noticed my face looked red and blotchy, I didn't think much of it but when I woke up this morning it was purplish and had filled in the rest of my face.  I went to my PCP and had some blood te…

Welcome, New Readers!

If you are new to this blog, welcome!  Before you start reading, you may want to check out the new link above called From The Beginning.  It explains my story with Cushing's and how to get help if you think you may have Cushing's Syndrome.  Another good post to check out is Why I Blog About My Health, which is pretty self explanatory.  I hope you find some useful information, please feel free to email me at lifewithcushings at gmail dot com if you have any questions or if I can help you through this in any way.


Psychics

Have you ever been to a psychic?  I have always wanted to but didn't want to go alone.  I think especially in a situation like mine, where things have been less than awesome for the last 10 years, that something like this, true or not, would be helpful to me.  Maybe it would help me look forward to the future, instead of bracing for the next big thing.  Maybe I would get some validation about what has happened and why.

Tonight, I went to a gathering at my cousin's house, and we had a psychic come to speak to each of us.
She told me that I don't have a fake bone in my body and that no one has to ever analyze anything about me, I'm an open book to others, but I analyze everything.  She asked why I wasn't a nurse of a doctor, and told me I had probably already met the person who I will marry someday.  She mentioned my grandparents that have died, and one who I never had a chance to meet.  She talked about my best friend and how it was a very unique relationship (anyo…

Midnight Blogging

As you may know, Cushing's can cause insomnia, or a change in your diurnal rhythm.  People with Cushing's often can't get to sleep at night but could sleep all day long if you let them!  I had months at a time where I was out of work and only slept between 7am-3pm.

Now, even though I don't have Cushing's anymore, I am still a night owl.  I rarely stay awake until 7am, but I can usually fall asleep around 1am and get up for work at 8 or 8:30.  Often, my best thinking is done when the house is quiet and I'm up all alone burning the midnight oil.  Don't get me wrong, I LOVE my sleep, but I like it even better when I can sleep from 2am until noon (sometimes later, I won't lie).

Are you a night owl or an early bird? How do you cope with having to stick to a sleep schedule?  I for one, cannot NOT sleep in on my days off.  I can't force myself to wake up when I don't have somewhere to be.  I need to collect those sleep spoons!


Thanksgiving

Thanksgiving is this week, and my good friend Melissa over at Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of, had a great Thanksgiving quote for people with less than great things going on and I thought it would be appropriate to share with you.

In other news,  I was in the ER last night with another episode of vocal cord dysfunction that wouldn't quit.  I sat, walked, and layed at home for about an hour before deciding to drive myself to the local ER (that I swore I would never go to again.) It's close, it was a Monday night, and therefore not busy at all, and I needed help and was not comfortable driving myself very far.  They just watched me and gave me humidified oxygen until it got better, and sent me home!  No big deal.  I was a little hoarse today and had some congestion and a sore throat but nothing too bad.

I will not be working for the first time since I was 16 so I'm excited for a holiday off. I hope you all have a wonderful Thank…

Flu Shot

This year, my place of employment is requiring me to get a flu shot, even though I have not had to get one in the past due to a possible egg allergy. This year, they have a new policy that says if you have a minor reaction like hives, you have to get one.

I'm waiting after a teeny test dose at my doctors office, they are watching me for any allergy signs. To make things a little more interesting, they are prepared with an epi pen as well as my solucortef shots. I have a feeling I'll be fine but I should be able to choose if I want to take this risk, not my place of employment.

Have you ever been forced to put something like a vaccine into your body even though there was a greater risk of an adverse reaction? What did you decide?

Vocal Cord Dysfunction

Remember when I was hospitalized in February?  I had a breathing issue and stayed the night so they could make sure I could breathe normally before I left.  On my way home, one of the doctors I had seen in the hospital had a new idea about what happened - vocal cord dysfunction.  It's when your vocal cords spasm, which sort of gives you the feeling that your airway is blocked and has a similar wheezing sound to asthma but it is coming from your throat.  I saw ENT and everyone else to rule out another cause and nothing.  It didn't happen again so I kind of forgot about it.

Well,  as I was walking the long and cold walk from the parking lot to work last week, it happened again.  My worst nightmare came true about this new parking lot - I was about halfway between my car and work, and had no one to help me.  I decided to keep walking towards work and finally got up to my department and by then things were much worse.  I could barely breathe and they called a code on me.  If you h…

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Lions, Tigers, and KIDNEY STONES, Oh My!

I had my 6th or 7th kidney stone a few weeks ago.  I had the bulk of them in college when I still had undiagnosed Cushing's Disease, and these horribly painful tiny things were the missing piece of the puzzle, for me at least.  Since college, I have gotten one every year or two, and after an ER visit and a day or two the painkillers can be stopped and life goes on.  Except this time, the wonderful nurses and physician assistant realized that this has been going on for too long without an answer or help to minimize the risk of getting more. 
I went BACK to MGH, my home away from home, to see a urologist today.  She and her student/fellow (?) came in and asked me if I had any significant medical history.  20 minutes later and a full history behind us, they focused in on my parathyroid hormone, which has been elevated before, and I had assumed, which is not a great thing to do with a history like mine, that the endocrinologist who found that abnormal test, had re-tested after my calc…

Almost 10,000 Views this year!

I can't believe I have over 9,000 views since the beginning of the year!  I was just telling one of my cousins at a family party this past weekend that I need to do 30 blogs in 30 days again, it really got me into a routine, even if I had to do a "catch up" blog or two.

As for me, I've been doing pretty well.  I just got back from Colorado, my cousin's wedding was the main reason we went but we got to do a lot of other things while we were there.

My health has given me a little break, as I haven't had any major issues since June.  I had another kidney stone that had probably been hanging out just waiting for the most inconvenient moment ever to decide to lodge itself in my ureter, but other than that I've been great!  I have traveled so much this summer, to Ft. Lauderdale to Christine's school, then Houston for ENDO, then DC to see some of my favorite people ever, and now Colorado!  I don't remember the last time I was able to do so much in one …

Houston - Day 2

I was sooo tired at the end of the day yesterday that I just crashed without blogging.  Ellen, my counterpart for this trip, has gone home for work tomorrow so I am on my own for a day before going home.  So far, I think it's been pretty good and a lot of people have stopped by our booth to talk to us.  We've given out a lot of reading material and diagnostic and testing guidelines, and of course business cards and newsletters.  (My story is in the CSRF newsletter this month!)

I've eaten my fill of frozen yogurt from Merck, who is right in front of us with that machine all day, and have a few stops I would like to make before the end of tomorrow, but I'm not sure if it will be possible now that I'm the only one.

I also got the opportunity to go to a presentation today given by an endocrinologist from Case Western on Adrenal Insufficiency.  The huge room was full, there was not an empty seat to be found, and I was surprised to not learn a single new thing!  They dis…

Off to HOUSTON!

I'm at the airport waiting for my flight to Houston.  You may be thinking "WHAT is in Houston?" The ENDO 2012 conference!  I'm going to represent the Cushing's Support and Research Foundation at their exhibit booth.  I'm excited for the experience, and as you may know, not too excited for the flying to and from part.  The good news, is already I can spot some endocrinologists that I have seen before so I know I would be in good hands if something were to happen (which it's not).  
I have downloaded the ENDO app for my phone and found that we will be in booth #1829.  I got to bookmark booths that I would like to stop by, as well as the food and relaxation booths.  I am going to try and blog as often as possible while I'm there, probably at the end of each day. 
We will be boarding soon so I should pack up and get ready!  Talk to you from Houston!

TED Talk on Stroke

As I rushed to post in our little BLA support group as soon as I could use my computer, this post came up with a TED talk by a woman who had a massive stoke.  She later had surgery to removed a golf ball sized clot in her brain and had 8 years of rehab after her stroke, but as she was having a stroke she was aware of that.  I never knew that when one area of your brain is oxygen deprived because of a stroke, EVERYTHING ELSE is working.  I knew what was happening, what I wasn't able to do, and why.  I recognized my family as they came in, first my mom, then my dad.  I showed people that I knew who they were by pointing and saying "Yes, yes, yes..." over and over again.  It was one of my 3 words I was able to say.  Yes, and thank you.

I loved this video because she talks about drifting from her perfectly functioning right brain, to her damaged but still hanging on left brain.  My very very mild stroke was on the left side of my brain, leaving my speech and right arm impai…

Just as things were improving...

Yet another setback.  I didn't see this one coming at all.  I was at a conference that I go to every year, and on Saturday I woke up with a headache.  Nothing big, just a little annoying headache.  I went through the day, even calling my endocrinologist on a weekend to get a refill for a medication I forgot.  After dinner, I was walking back to the main building and felt a little off. By the time I got back, I was slurring words and having a LOT of trouble with word retrieval.  This progressed until I had no speech that was intelligible and my right hand felt all tingly and numb.

My friends mom is a nurse and she was there to give my my injection of solu-cortef and Andrew called 911 (I think he did, someone did).  They took me here, to Mass General, where I was treated in the ER with tPA which breaks up clots that cause strokes in the brain.  I had scans, tests, and more tests, and finally as I was regaining some speech they sent me up to the Neuro-ICU to stay.

 Through the night…

Memorial Day and a new laptop!

One of the reasons my blog posts have slowed down is my old laptop from college had become a desktop.  It didn't hold a charge and would shut down when I moved a little too far away from the outlet it was plugged into, causing many lost blogs that I didn't have the patience to re-write.  This week, I finally got a new laptop!  Thank god for refurbished, MUCH cheaper macs.

I hope this new computer will inspire me to write more, and I have a list of ideas for future blog posts that I thought of while computer-less.
In other news, I went to my mom's second grade concert at her new school (she is a music teacher) last week.  It was for memorial day, and it was AMAZING.  I am always impressed with the work she does with such little kids. They invited veterans to the show and showed a video along with the last song, which definitely made me cry.  (I think I saw some of those tough men and women in front of me wiping their eyes too!)  

Florida!

So I wrote the last post in the airport waiting for my flight, so didn't get to share too much about my trip.  I was so excited to have a mini vacation and see where my good friend, Christine, had been living for the past 2 years.  As I wrote, the flight down was horrendous.  A thank you goes to the tall man who sat beside me, he kept his tray table down the whole flight and kept most of my belongings on it because I spent the flight with my head on mine.  Great guy who was more than patient in a gross situation.

Anyway I got there, was fine as soon as I got off the plane, and was sweating in my leggings long sleeved shirt in the Florida heat.  For the first time, maybe ever, I didn't mind being a little warm!  I was just so relived to be on the ground.  It was an early morning the next day and we made our way too school for their presentation on ME!  The presentation was great, and I fought tears every time I saw a picture of myself up on the screen, but I made it through wit…

Leaving Florida

I've spent the past few days in Ft Lauderdale with a good friend who is finishing PA school. She did her final project on Cushing's and invited me down to see it and tell my side of the story.

The flight down was awful, I was extremely sick the entire flight. The few days I was here were great, I don't want to leave! I'm in the airport now waiting for the flight to board, wish me luck! Hopefully I will be able to just fall asleep.

Cushing's Awareness Challenge - Day 29 - Pictures!!

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!

Cushing's Awareness Challenge - Day 28 - What This Month has Meant to Me

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…

Cushing's Awareness Challenge - Day 27 - Weight Chart

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 …

Cushing's Awareness Challenge - Day 26 - The Spoon Theory

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…

Cushing's Awareness Challenge - Day 25 - Life Isn't Fair

(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…

Cushing's Awareness Challenge - Day 24 - Horses and Dogs get Cushing's too!

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





Cushing's Awareness Challenge - Day 23 - The Diagnosis and Treatment Process of Cushing's Disease

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…

Cushing's Awareness Challenge - Day 22 - If I had a friend with Cushing's, What would I tell their family and friends?

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…

Cushing's Awareness Challenge - Day 21 - Looking in the Mirror

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 …

Cushing's Awareness Challenge - Day 20 - Other Bloggers

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/

Cushing's Awareness Challenge - Day 19 - What Cushing's has Taken from me

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 …