Archive | January, 2012

Fat is my new black.

30 Jan

When I was in high school, I had an affinity for wigs. Yes, wigs. My favorite was one that allowed me to have a mullet hair cut, and the tag on the inside read “Black is beautiful”. Well, fat is my new black.

With Cushing’s, everything is way out of my control and I’m literally unable to do anything to control the things that have happened and are happening to my body. Other than going with the flow, living a healthy lifestyle, and taking a few medications, there’s not a thing I can do to stop the symptoms from piling up. I have always had a very poor body image, and when I was a size 8 and weighed 165ish pounds, I thought I was morbidly obese every time I looked in the mirror. My BMI was in the “healthy” range. Now, categorically speaking, I am classified as “obese”.

Being fat is not ideal, but I have come to accept it for what it’s worth. This is a temporary situation, and this too, shall pass. But when?  I’ve been enduring the madness that is Cushing’s Disease for quite some time now and I’m ready for it all to just be over. My brain tumor is apparently gone, but there’s a 10% chance it will grow back (but that leaves me with a 90% chance that it won’t!)…I go back down to Shands on February 21st for a follow-up MRI and more results. If this past surgery wasn’t 100% effective, there’s a very good/real chance that I will have to have my adrenal glands removed, which is not exactly what I’m hoping for.

Back to the bigness I have encountered, it really has opened up my eyes to a whole new world. I don’t move like I used to and I can’t do some of the things I once used to love. People look at me differently and probably assume the worst – that I am fat and can’t take care of myself. Quite the opposite is true, aside from being fat. I have a very serious medical condition that has MADE me this way. I promise I did not ask for this condition to be bestowed upon me, that I can say. I am sometimes embarrassed to leave my house because I don’t want to be judged for the way I look, but I am coming to terms with the way I have become for the time being.

Being this size doesn’t change who I am. If anything, I have become a much nicer person and much more accepting after having been diagnosed with Cushing’s. It goes to show that you literally cannot judge anyone for anything, especially things that are physical. At first glance, you have NO IDEA what someone has gone through, is going through, or will go through in life. Moral of the story: Be nice to everyone you encounter!

To make a long story short, fat is the new black and I wear it well. In the words of the trashy pop band, LMFAO, “I’m sexy and I know it.”…I work out (sometimes)…

With love and a camel no longer in tow,

Laura

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Empty Bladder…on the floor.

25 Jan

So my blog is probably not as exciting as Bob Lob Law’s Law Blog (What what, AD!), but I think it’s still pretty informative and entertaining.

 
Going back to my previous entry, I have another story about muh bladder. Reader beware – it’s hysterical and only happens to the best of us. Are you ready?! OK: Go.
 
So, this happened a couple years back (October 2009), about 2 weeks after I arrived in Ethiopia as a Peace Corps Trainee (PCT for short – get used to PC-related acronyms)…Prior to being in PC, I had never in my life had bladder problems. Perhaps this was this start of my time with Cushing’s, although we’ll never know. Anywho, during training, our internet time was very limited – in that we only had access to a computer with The Innernette about 1x/week, usually to the tune of about 10 minutes per person (there were 41 trainees in my group, and most everyone wanted to check their sites/emails on a weekly basis…). So, I would always go to the internet bet (translation: Internet House) with my flash drive in hand, open up gmail, pull all my emails into a big word document, and throughout the course of the week, respond to each email on my computer back home, then send them out 1 week later. 
 
Well, on one particular Saturday, I think it was the first or second time going to our favorite Internet Bet, I was checking my sites, when I got the most incredible urge to pee. Before I could do ANYTHING about it, I just started peeing, while sitting down checking my Gmail. I was somewhat mortified, and also somewhat relieved that my full bladder was being emptied against my will. In the midst of my urine flow, I stood up and announced to the others in the room that I was in fact peeing on myself, and that there was nothing I could do about it at that point. Keep in mind that I didn’t really KNOW anyone in my group of trainees, and at the time, there were roughly 10 others in the internet place with me. 
 
Instead of crying, as a normal person would do, I just started cracking up, while a pool of urine formed underneath my feet. The ladies who worked at the store brought over a mop, cleaned up my mess, and acted as though what I had done was perfectly normal. Embarassed but still laughing, I paid for my Innernette use and went along my merry way, wet skirt in tow. One of the other kind trainees lent me her scarf to tie around my waist, and no one ever spoke of it again. Somehow my story never made it into the PC rumor mill, as vicious lies and funny rumors often did. I think everyone just felt bad for me, wouldn’t you?!
 
That’s all for today! Hope that made you laugh 🙂
 
With love and a camel no longer in tow,
 
Laura

Forever Lazy? Nope, Forever Thirsty for This Girl :(

14 Jan

Salamta!

e.e. cummings once said, “The most wasted of all days is one without laughter”.  And how true this statement is. I have no idea where I would be in life without my sense of humor – it’s my one saving grace.

I had my first post-op appointment following my 2nd brain surgery yesterday down at Shands. I should have known beforehand – bad omen on Friday the 13th, right?! It was less than desirable, but I just have to keep my head up. I now have another bizarre rare hormonal disorder to add to my list of ailments. This one is called Diabetes Insipidus. Basically, during surgery, my pituitary was nicked on the posterior lobe, thus giving me this rare form of diabeetus. In a nut shell (I like cocoa dusted almonds), I will be dehydrated for the rest of my life. There’s a slim possibility that it could correct itself, but that’s not too likely to happen. I now have to get a medical alert bracelet and a card thing to keep in my wallet, alerting paramedics/life savers that I HAVE to have this medication if I am incapacitated, or else it will end badly. To make a long story short, be sure you have plenty of water in store if I ever come visit you…For the rest of my life I will be thirsty and have to take something called DDAVP 2x a day to control my thirst and muh bladder. Blerg!

So that’s fun point number one. Number two is that my cortisol went down after surgery, but then spiked back up, and so it can’t be measured again for 3 weeks, until I am off of my steroid medication. But, my endocrinologist is not yet ruling out the very real possibility of me having to have my adrenal glands removed. Not ideal, but if I have already survived 2 brain snurgeries, I think I can handle this one. I have always lived by the fortune cookie “fortune” I once got that said, “Don’t let statistics do number on you”…but ultimately, I feel as though I have failed this fortune. It has become somewhat of a misfortune in my life…

I asked my endocrinologist for a prescription for more cowbell cause I had a fever. She actually laughed and was very pleasant during our entire appointment (but only prescribed me more DDAVP). Hahaha. Love me some old SNL, Will Ferrell style. She’s on par with me doing cool things with my life and gave me the go-ahead to fly and to attend my silent meditation course. Starting this Wednesday, I’ll be doing some traveling for a little more than a month, which I’m really looking forward to. I am going to ATL, Wisconsin, Meditation course (no talking/texting/facebooking/AHHHH!!), ATL again, and my bestie from PC, Kate, is coming to visit!! We’re going to listen/meet Aaron Williams, the director of Peace Corps in Gainesville on Feb 21, then make a trip to Orlando to check out the Wizarding World of Harry Potter! Should be a good time…

A conclusion that I drew while at Shands yesterday is that Canadian tuxedos (jean on jean) are never a good idea…I saw 3 people wearing them at the hospital. Also, please don’t bring your Chihuahua to the hospital. I have now seen 2 of them, neither of which were service dogs…both of which were wearing dog clothing. Come on people!

What would YOU give a world renowned neurosurgeon who has literally saved your life 2x in 6 months?! I got Dr. Roper a pretty clever little gift in the form of a fair trade, sustainably made hand-carved wooden nose that sits on a desk and is a glasses holder. He LOVED it, as he operates through schnozzes and he wears glasses. I also got a set of fake staches for all of us to wear yesterday (he has a sweet stache), but neither my parents nor my case manager wanted to wear them! Go figure.

I am looking forward to being active again and losing some of this weight. I can’t wait to hit the pavement in the form of biking and even power-walking/yogging! Also, my first tat tat has to be put on hold, until I get down to the size I want to be. I am going to get a tattoo in the form of a gnome riding a camel. It’s going to be somewhat amazing, so you should probably be jealous! But, my endocrinologist said if I get it now, it will most likely morph into a blob after I lose the weight. Again, not ideal!

Well, Happy New Year to you and yours and I hope it’s off to a good start thus far. My year is going to be nothing short of awesome, and I hope yours is the same way. To quote my favorite pop star, Rihanna, “Life’s too short to be sittin round miserable….” Hahahahaha how true. Get out there and do something adventurous with your life. Hang glide on a dorito like Marcel the Shell. Eat chocolate if you want to eat chocolate. Why? Because it’s worth it. And YOU’RE worth it as well. Thanks for your continued love and support – you’re all wonderfully amazing people and I’m lucky to have you in my life.

With love and a thirst for ice water in tow,

Laura

I devoted my life to a good cause and came home early with a brain tumor??? Read on.!.!.!.

6 Jan

Salamta!

I don’t know if you noticed, but I’ve been MIA for about the past year or so. I’ll tell you what happened, as it’s been a whirlwind of a year…or 2 years, really.

After graduating in December 2008 with a degree in Health Education from the University of Florida, I applied to join the US Peace Corps. It took months to get accepted.  However, after everything was said and done, I received an invitation to serve in a health program in Ethiopia. I left for Ethiopia in October 2009 as a very young, healthy, and motivated individual, in hopes of changing a few lives.

I loved living in Ethiopia and being in the Peace Corps. However, in February 2011, I started withdrawing from life and things I enjoyed.  Eventually, I stopped communicating with my family and friends, and quit going to work at the local health clinic where I was stationed. My parents started to worry; they got in touch with the Peace Corps medical staff in Ethiopia, who in turn flew me down to the capital city so I could be evaluated. This was on Easter Sunday, 2k11 (late April).

At first, the doctors thought I was severely depressed.  I was medically evacuated from Ethiopia and sent to Washington DC, where I was evaluated by “mental health professionals”.  From this encounter I was admitted to a psychiatric ward of a hospital and within a matter of days put on four pretty potent antidepressants. I kept getting worse. I rapidly gained weight, lost a lot of my hair, my period, and basically, all joy in life. So, being that I was in a hospital setting, the doctors started running all kinds of tests;  lab work in the form of blood and urine tests, MRIs, a spinal tap, CT scans, etc…by the third week of my hospital stay it was determined  that the cortisol in my body was being produced at a rate of 5x the normal limit. Cortisol is the body’s stress hormone, and it also controls your metabolism and blood pressure.

When the doctors took a collective look at all of my symptoms, I was the poster child for something called Cushing’s Disease. I literally had every single symptom of the disease. Cushing’s, a rare hormonal disorder that affects very few people worldwide was affecting me!. After 28 days of being locked up in the psych ward, Peace Corps signed me over to my parents and drove me back to Florida. Upon my return to Florida, I was seen by a team of specialists at Shands Hospital at the University of Florida. I started seeing an endocrinologist down there, and through more lab work, it was discovered that I had a small tumor on my pituitary gland, which was causing the Cushing’s. I had my first brain surgery on August 24, 2011. I had to take steroid medications after my surgery, so my cortisol levels couldn’t be measured until after being on the meds for 2.5 months.

While waiting to get off the steroids, I kept putting on weight, to the tune of about 2.5 pounds a week, even while participating in Weight Watchers. My blood pressure had gone up 40 points, and my feet were swollen to the point that I could only wear old stretched out flip flops and Ugg boots (in Florida when it’s 85 degrees!). I retained fluid like it was my job!

To make a long story short, I got a call from my endocrinologist a couple days before Thanksgiving, saying that the Cushing’s was still in my body and that the first brain surgery wasn’t 100% successful. My only option at this point was to have another operation, or I will ultimately die from heart failure due to all the secondary complications of Cushing’s. I had a second pituitary tumor removal on Thursday, December 22nd.  Fortunately, I was released on Christmas Eve and was able to spend the holidays back in Tallahassee with my family!

All signs point to the second surgery as being a success, but I’ll know for sure when I go back to Shands next Friday, January 13th. Already my cortisol in the blood is down where my doctors want it, my BP is down like 25 points, and I have lost 5 lbs instead of gaining 2.5/week. Also, all of the swelling is out of my feet/legs, so I can FINALLY wear shoes again. Small victories, or baby steps, I call them!

Before I was diagnosed with Cushing’s, I was a size 8 and weighed 165 pounds. The last time I was weighed by my doctors, I weighed 239 pounds. I have gone from a size 8 to a size 18.  Additionally, I’ve taken an extreme blow to my sense of self.  Cushing’s is not necessarily a physically painful disease, but it’s taken so much of an emotional toll over my entire well being. Plus, there is really not a whole lot out there about Cushing’s Disease.  I want to bring awareness to this Cushing’s situation and maybe be a source of inspiration for others out there facing the same problems.  From what I’ve found out.  I am indeed very fortunate.  It only took me a matter of months to get diagnosed and treated.  Too many individuals are only evaluated one symptom at a time and suffer needless self degradation for years and years.  I’ve had an amazing support system of friends and family behind me the whole time, and everyone is just happy that I am in good hands with world renowned doctors at Shands.

I am trying my best to stay positive throughout this whole ordeal, and I have a feeling that everything will work out in the end. Nonetheless, I want to write a book about my experiences in Ethiopia, the mental ward of a community hospital, and my bout with Cushing’s Disease.  How does one go about doing such a thing? I want part of the proceeds to go to my bank account so I can further my world travels, part to Cushing’s research and treatment, and part to a foundation I want to set up in my old village to do health related work in Ethiopia. I would also like to become a spokesperson for Cushing’s, as I am the face of this disease.

If you are interested in talking more or meeting with me to further discuss my crazy situation, please do not hesitate to contact me at 850.544.1614, or you can email me at CopelandLE@gmail.com. If you want to see pictures of my time in Ethiopia, I have a website: http://pioneerdaze.shutterfly.com , and I have 2 years worth of mass emails (highly entertaining), that I used to send as updates to my friends and family back home. I was medically separated from Peace Corps on June 29, 2011; I am still technically considered to be a “Returned Peace Corps Volunteer”, even though I was unable to complete my 27 month commitment.

With love and a brain tumor no longer in tow,

Laura Copeland