The Psychosocial Aspects of Disease

13 Nov

When I was in undergrad at UF, I took a class about the psychosocial aspects of rehabilitation. The term “psychosocial” defined means relating to the psychological and the social aspects of something, in one fell swoop. In treating disease and disability, this is often an overlooked entity, as a traditional or specialist MD doesn’t specialize in the psychological aspects of the medical condition. In treating my disease, I have a treating endocrinologist, a supplemental/second opinion endocrinologist, a neurosurgeon who specializes in pituitary tumors, a new neurosurgeon who specializes in a different type of brain surgery, a general doctor/nurse practitioner duo, a psychiatrist, a therapist, and then numerous people with various specialties. For convenience’s sake, it would be ideal to set aside a day a month or so and have 10 various appointments, but that’s not realistic by any means, and I have to travel to see my specialist team members at Shands, which is located about 2 hours from my home.

If you’ve followed my story at all, you’re well aware that Cushing’s is a very complicated disease, and it manifests itself in so many ways. It all started with a brain tumor that caused an over-production of cortisol in my body, which in turn tried to ruin my life. It changed me both mentally and physically, and I am still recovering on both sides. Psychologically, I’ve been all over the place, from being severely depressed/suicidal, to being manic and blowing through my savings account and drinking way too much and waking up at 4:30am everyday, regardless of what time I went to bed. I went from having an overly flat affect and not being able to really have any sort of emotion (other than the desire to die) to being too emotional, with a vocabulary that mainly consisted of the “F word” and other words that a well-educated young woman should not use in the company of others. I made new friends along the way, while damaging pre-existing relationships with others. It’s not something I look back on with fond memories, but the only thing I can say, is that it wasn’t me, it was my disease, and I apologize.

I have greatly recovered from many of the physical and psychological manifestations of Cushing’s Disease, but I’m not sure that I’ll ever be “cured” of this monster that lives inside of me. I recently went to Shands for an appointment with my endocrinologist down there, and she had my latest lab results, and bluntly told me that I’m “not cured”. She recommends I have my adrenal glands removed (bilateral adrenalectomy is the technical term), as a quick fix to my ongoing health saga, but failed to mention the possible complications from that. In doing my own research, I’ve found that I would trade Cushing’s Disease for something called Addison’s Disease, meaning I’d go from making too much cortisol, to not producing any at all. In addition to the trade-off in diseases, I’d have to be on replacement hormone pills for the duration of my life, and literally could never be caught without my meds, or I’d run the risk of dying. Cortisol production is not the only function of the adrenals. An alternative option I have is for stereotactic radiosurgery, which is “bloodless brain surgery”.

Unfortunately, there’s no magic elixir for healing from the after-effects of Cushing’s Disease. I am trying my hardest to live an extremely healthy lifestyle, and be overly aware of what I put into my body. I cut out all processed “foods” for the most part, and try to just do whole foods that don’t have ingredients that I can’t pronounce. I recently bought a bunch of food-related books, dealing with the food-body connection, pH balance in the body, obesity in America, etc. etc…They should keep me busy until my next doctor’s appointment, which is coming up on December 10th with a new neurosurgeon, one who specializes in stereotactic radiosurgery. By doing what I’ve been doing since coming off of steroids following my third surgery, I’ve lost 30ish pounds (120 sticks of butter, barf) and have an increased level of motivation to get back to my pre-Cushing’s weight.

I’m so motivated to lose the weight, because I feel as it is a big hindrance in pretty much every aspect of my life. Thinking back about my entire life, I don’t think there’s ever been a point in time where I’ve actually loved myself; I’ve always found fault with basically everything I do and always see the room for improvement rather than focusing on what I have accomplished. However, throughout this whole ordeal with Cushing’s, I have finally developed a self love from within, and I’ve accepted this disease for what it is. It took me quite awhile to realize that some greater force (in the form of a brain tumor) did this to my body/life; it wasn’t my choice. I am worth the end result of looking and feeling amazing, therefore I’m going to work my ass off in order to achieve those results. I don’t think the general public knows that a brain tumor can literally make you become obese in a matter of months, regardless of what you do to combat the weight gain. But that happened to me and I can’t go back and change that.

I’ve spent the last year and a half hiding from cameras and not wanting people on the innernet to see my face. Along with my newfound self-love and acceptance, I’ve come to terms with the fact that this is who I am and I shouldn’t be ashamed of my physical appearance. I’ve put together a nice little photo collage of me over the years, in chronological order, from a wee lassie to this past Saturday. The bottom 2 pics on the left are 2 of the only pictures I took while in the height of my disease, as I shied away from the camera more often than not. The bottom right picture is me during the recovery phase of this Cushing’s nonsense, a drastic improvement from around this time last year. One day you’ll be able to see my dimples again, they’re simply staying warm during the cooler weather we’ve been having.

I’m getting better all the time!

I’ve never been rail thin throughout the 26 years I’ve been alive, but I have always been relatively healthy. Body image is something I’ve battled for as long as I can remember, and I think I’m ashamed of my body largely due to the societal norms we have in place here in America, and how I no longer fit into those norms. I’m not being vain, this is straight up how I feel. Underneath the copious amounts of fat I’ve gained, I’m still the same person on the inside. I’m a much better person on the inside, and I’m proud of that. Most people will be fortunate enough to go through life without a serious health complication (except maybe in old age) and a crazy rare disease, but I wasn’t so lucky. It’s a major road bump I’m having trouble getting over, but I know that I will one day. I’m still battling the medical side, in addition to the psychosocial factors that go into treating disease. It’s not an easy thing I’ve had to deal with, but I am so thankful for my friends and family (and even strangers from the interwebs) who have been by my side every step of the way.

In addition to my phenomenal support system, I’ve had the pleasure of working with some amazing (and not so amazing) doctors and nurses. I have no idea when this will all come to an end, but the month of December will be a joyful time of lab tests, a consultation with a new neurosurgeon, an MRI, and of course the holidays!

I like to think that pop songs all have an element of truth behind them, so I’ll close with some lyrics for the song I’ve been stuck on lately: “You shoot me down, but I won’t fall…I am titanium…” (thanks, David Guetta!)

…or a mass of fat, organs/tissue, fluid and bones, but you get the point.

With love and a microscopic brain tumor still in tow,

Laura

88 Sticks of Butter

10 Oct

Gone. Which is the equivalent of 22 pounds of fat. I know it’s not the greatest thing since sliced bread, but it is great progress, from a personal standpoint. Coming from someone who would gain 2-4 pounds a week this time last year, regardless of what I did, this is HUGE. So after all this time of waiting around to see if my 3rd brain surgery was successful from April 2k12, it appears as though it was indeed. And if that’s not a reason to celebrate, I don’t know what is!

Maybe the fact that today is World Mental Health Day gives me another reason to celebrate. For overcoming a somewhat severe mental illness, that was caused by a major physical illness. The brain tumor I used to have in tow caused me to have Cushing’s Disease, which is horrible in and of itself.  My depression (caused by Cushing’s but unbeknownst to anyone at the time) is what landed me back on US soil after having spent the previous 20 months living/working as a Peace Corps Volunteer in Ethiopia. Major Depression is the diagnosis that was given to me that was the reason I spent 28 days living on a psychiatric ward of a hospital in Washington D.C. This depression is the reason I had to be on 4 potent psychotropic medications for a duration of many months. This depression is what caused me to pretty much retract entirely from society, to withdraw from my loved ones, colleagues, and life in general. This depression is what caused my mind to only entertain suicidal thoughts. This depression is something I overcame.

To see me today versus where I was when I first came back from Ethiopia is amazing. Granted I am many pounds heavier, I am so much healthier. From a mental and physical health perspective, I am “punishing it” (in the words of my dear friend, Kate Boyd)! I feel better than I have in ages, and recent blood work revealed that I am in fact pretty damn healthy. Thanks to modern medicine, I no longer have a brain tumor, and a hormone that was once insanely out of whack and the cause of my disease (cortisol, aka my personal devil), is finally within the “normal” range. Now that my body is on the verge of being disease-free and things are returning to the way they once were, weight loss should (and already has) occur. It’s something I’m going to have to work for, as the pounds won’t just fall off, but it’s a commitment I’m more than willing to make.

World Mental Health Day seeks to raise awareness for a problem that plagues many people worldwide. I know from experience that having a mental illness is not fun for anyone involved, but it is something that can be treated. But above all else, people with mental health issues are still people. They deserve the same respect you’d give to a person without mental illness. Stigma needs to be decreased when it comes to dealing with people who have mental health issues, as they are much more common than you may think.

I don’t know what I’d be doing right now had I not had this crazy setback related to medical problems and I’d probably still be living overseas. I’m not ashamed of my past diagnosis and I’m still unsure of what the future holds. I’m pretty sure no one sets out in life with the dream of having mental health issues one day, but life events and certain medical conditions can cause it to simply happen to people just like you (and me!). 

While it was hella strange to go through some of the stuff I’ve been through over the past year and a half, I don’t have any regrets. Surely I wish I had never been burdened with a brain tumor that caused Cushing’s Disease, but it happened, and no one can go back in time and change that. I have learned so many life lessons about myself and others throughout this whole ordeal, and ultimately, it has made me a much stronger person. I’ve been through a lot, and have seemingly come out victorious, when I was somewhat near death not too long ago. I have the desire to continue healing and to share my story with others, because if I can help just one person out there, that will have made my experiences worth going through.

We all fight different battles, and some are similar, while others are unique. I still have never met another human with Cushing’s Disease, so I tend to think that my situation falls on the unique spectrum. But I haven’t given up hope, or my belief that things happen for a reason. Who knows what I’ll be doing 5 or 10 years from now, but I know that I will never be plagued by having had a mental health issue. 450 million people worldwide have a mental illness diagnosis, while many more go undiagnosed and untreated. It’s OK to reach out for help, as no one should have to go through something of that nature alone. It’s time for the world to be educated about something that is pretty near and dear to my heart.

I’m 1 in a Million

19 Jun

Literally. That’s the likelihood of getting Cushing’s Disease if you’re human. Although it is a rare disease of the endocrine system in humans, Cushing’s is somewhat common in dogs, affecting about 1/1000 of our furry friends a year. The clinical presentation is similar in both humans and our canine pals, and I guess I should throw it out there that it can also occur in horses and cats. Lucky me, right?!

Along the lines of my prognosis with Cushing’s Disease, I recently went for my first post-operative brain scan following my 3rd surgery pituitary surgery. Upon his initial reading, my neurosurgeon deemed the tumor gone, and that I’m pretty much out of his care. However, for the rest of my life, I’ll have to have bi-yearly MRIs, to check on any regrowth of the tumor (there’s a 10% chance of it happening). I’ll be 26 in a month, and I’ll consider it an early birthday present to myself that I don’t necessarily need a neurosurgeon in my life anymore!

I will go back to Shands (the hospital I go to for treatment) at the end of this week to meet with my endocrinologist, Dr. Quinn, Medicine Woman. She will most likely order a couple lab tests in the form of a 24-hour urine collection (who doesn’t love handling a gallon sized jug of their own urine!), and/or a Midnight Salivary Cortisol collection (these tests give accurate readings of cortisol in the body), to be performed the following week…so it will be a few more weeks before we’re certain if the Cushing’s is still present in my body. Once I am free of my my ‘roid intake and if in fact my cortisol is at a normal level, I will be free of Cushing’s and my life will hopefully return to what it once was. If my cortisol is still high, there may be a need for a 4th surgery, and this time it would be to remove my adrenal glands.

The adrenal glands sit on top of the kidneys, like little party hats, and these fun things are responsible for the production of cortisol (among other things). Having a bilateral adrenalectomy (both adrenal glands removed) is not something I want to have happen in my life, but there may not be another option. Time/lab tests will tell, and if that’s my latest punch, I’ll just have to roll with it. It’s already been a crazy year, and what’s one more surgery going to do to me?! I just hope daily and cross my fingers that this is the beginning of the end of Cushing’s Disease for me.

At times I feel like a 25 year-old trapped in a 75 year-old’s body, but here’s to hoping that this will all change within the coming months. Battling a crazy illness at such a young age hasn’t been the most fun, but it has been important to keep a positive attitude throughout. As I’ve learned the hard way, life really is too short to take things for granted. My life has been greatly impacted in many ways from the burden of disease, but I’m trying not to let it slow me down. I can just take things one day at a time, and you should too!

Thanks for all of your continued positive energy, love, support, and encouragement – it really does help get me through my days. Happy June/Summer – and don’t be surprised if your dog gets Cushing’s!

With love and a brain tumor no longer in tow (for real this time),

Laura

 

1-Year Anniversary!

30 Apr

It’s been pretty much a year to the day since I was medically evacuated out of Ethiopia and brought back to ‘Merica, to the land of the free and the home of the crazies (I spent my first month in a psych ward in a hospital)…Times flies when you’re sick, and a lot has happened in the past year! I left without getting a chance to say goodbye to my Peace Corps friends and family, as well as the townsfolk and family where I lived and worked. I thought I was going to Addis Ababa for a few days to visit the doctor, but surprise! I came back to the States instead.

3 brain surgeries because of a small tumor that tried to ruin my life. A weird thing called Cushing’s Disease. 85 lbs of weight gain due to the aforementioned – who saw these things coming? Not me at all. This time last year, I was going into the final stretch of my service as a Peace Corps Volunteer (PCV) and if you’d told me that this is the turn my life was going to take, I would have looked at you as if you’d lost your mind.

I was uprooted from a life that I had come to enjoy quite a bit. Living in Ethiopia was at times very taxing, but for the most part, it provided me with much happiness. Coming from a country where everything is so comfortable, to a land where that term doesn’t really exist in the way I once knew it, proved to be a challenge that I quickly overcame. Moving from my own apartment to a room in a house shared by an Ethiopian family was at first a big shock. Learning to use the bathroom without the lavishness that is a Western toilet also threw me for a loop at first. Heating my water for a bucket bath soon became quite a luxury in my life as a PCV. Hand-washing my laundry became therapeutic to me. Getting sick out of both ends at the exact same time was humorous. Life without creature comforts, or modern conveniences in general, became the norm in my life. I didn’t have anything to compare it to, so I just took in my surroundings and tried to make the most of my situation.

And now that I’ve been back to the land of choices for a year, I still feel overwhelmed whenever I leave the house. My simple life in a small Ethiopian town doesn’t translate to living here. For real – we take things for granted on a daily basis because America is so comfortable. Until you’ve lived in a developing country, you might not notice that there’s an entire aisle at the grocery store devoted to toilet paper, and another one just for salad dressings and other condiments. In my small town, we had one choice for toilet paper, or “softi” as the locals called it. Condiments didn’t exist, and there was one option for salad dressing – oil, vinegar, and a squeeze of lime. I do miss the simplistic nature of living in Abyssinia, but life in America ain’t all that bad! It is nice to be back in a place where people understand me when I speak. And I will not complain about the never-ending supply of hot water and the multiple toilets that are in my current home!

I learned so many invaluable lessons while being a PCV, both from my fellow PCV friends/colleagues and the locals, that I could write a whole different blog, or even a novella! I want to commend all of my Peace Corps friends and colleagues, past and present, on a job well done. You guys truly are all amazing and I’m glad to be back in touch with most everyone from my original group. You’ve all touched my life in so many different ways and I’m a much better person after having met each and every one of you. And to my Habesha friends and family – I love and miss you all! I am planning a return trip just to visit and say “Dahan dikum” to you all, but I must first be medically stable for a few months before my doctors will allow me to travel to the developing world.  I can’t believe it’s already been a year since I left…So on the 1-year anniversary of my homecoming, I have been reflecting over my service, and I want to thank everyone who was a part of it, from the bottom of my heart. I couldn’t have made it through without your love and support, and the same applies to my medical nonsense. You are all awesome!

With love and a return trip to Ethiopia in my somewhat near future,

Laura

Brain Surgery Numero Tres

8 Apr

It’s weird to say it, but in the past year, I have had more brain surgeries than menstrual cycles. True story, as my hormones are wayyyyyyyy out of whack with this Cushing’s Disease nonsense. My body produces too much cortisol, which is caused by a small tumor on my pituitary gland, which kind of sits behind the eyes, right on top of the optic nerve in the brain. A few days ago, on April 4, 2012, I had my third brain surgery, or transsphenoidal pituitary tumor resection, if you want to get technical. Hopefully this one will have done the trick and will prove to be 100% effective this time around.

Looking at me, you’d have no idea that I just got out of the hospital after having had an operation on my cranium. No head shaving or skull cracking for this girl. My neurosurgeon operates through the nose! Thank some higher being for modern medicine, as this operation used to be done through the upper lip/gum area or through the skull. With the exception of a sore left nostril and a forearm that looks like it belongs to a heroin junkie, I am feeling great. However, I never really can sense when my body is way out of balance (hormonally speaking), so lab tests will have to tell. I have to get lab work done 4 times in the coming 2 weeks – my doctors are wanting to test my cortisol and a bunch of other hormones, to see if my pituitary is still functioning as it should. I go back to Shands for my first post-operative follow up appointment in 2 weeks.

I got good news from my neurosurgeon that the tumor he removed was indeed an ACTH (adrenocorticotropic hormone) – secreting one, which is what they were going for. ACTH is the chemical from the pituitary gland that stimulates the production of cortisol in the body to come from the adrenal glands. Too much ACTH in turn means too much cortisol! Endocrinology 101 for you. Kidding – I don’t know the half of it, but have come to understand a bit about what’s ruining my innards. It is still crazy to me that something the size of a BB or pencil eraser can have such a negatively profound impact on one’s health and general well-being. Before going into this round of surgery, my blood cortisol level was 15, and the day after surgery, it had dropped down to 1.2. Anything under 3 is ideal, so my neurosurgeon and his nurse were rather excited by the extreme drop in my hormone level. Cross your fingers that it stays down and doesn’t spike back up, as it has in the past.

So now it’s back to my old routine – no nose blowing, sneezing, drinking out of a straw, or swimming for two weeks. Don’t want to blow my brains out. Literally! Anywho, I’m really thankful that I came out of surgery alive and [hopefully] better off than before. I’m just really ready at this point to get on with my life and for all of this to be over with. I hope to goodness that this is the last surgery I’ll need and that this past one is the beginning of the end that I have had in sight for awhile now. I genuinely thank everyone for their love and support, calls, texts, emails, cards, etc, etc…You’re all rock stars in my book :) Especially my family – you guys have been nothing short of amazing throughout this whole ordeal.

With love and a brain tumor no longer in tow (doesn’t that have a nice ring to it?!),

Laura

Out of Surgery

April 4th will be my lucky day!

25 Mar

Salamta!

It’s a good thing that I enjoy lemonade, as life sure has thrown a few lemons my way this past year. The latest with my ongoing health saga is that I am indeed a candidate for a third brain surgery…duh! But this all had to be confirmed through a saliva test and then a 24 hour urinary cortisol collection test, wherein for 24 hours, I was fortunate enough to dump all of my urine into a neon orange gallon sized jug for the lab. The problem with this was that the incompetent imbeciles at LabCorp initially gave me an expired test kit, so I had to redo it. When I brought it to their attention, the response I got was, “Oh, guess we should have checked it before we gave it to you, haha! Actually, we just like seeing you around here all the time!” (Side note – they do know me by name there…) Just can’t sweat the small stuff, but all of these minor annoyances just feed into the bigger annoyance that is Cushing’s Disease.

Cortisol can be tested through many different bodily fluids – blood, urine, and saliva. My salivary cortisol test came back normal, but my urinary cortisol was way high, and coupled with me still having a bit of a brain tumor, weight gain, high BP, etc.,  a third surgery sounds like a lot of fun right about now. My neurosurgeon has never done 3 of the same operation for someone with Cushing’s, but I guess that just makes me a wee bit special. Here’s to hoping that the third time will in fact be the charm that sets me straight once and for all.

I requested that Shands and the Department of Labor duke it out with each other before scheduling me for surgery, as a lot goes into mentally preparing for such an occasion, and I didn’t want to be cancelled on once more. I got word Friday morning from the DoL that my procedure had been approved, then Shands called me yesterday afternoon to schedule a time. I chose Wednesday, April 4th as my lucky day, and am calling it an early Easter gift to myself. I seem to enjoy spending the holidays in/around the hospital!

IF this surgery isn’t successful, I’ll have to get my adrenal glands removed, but I do believe there is some truth in the cliché saying of the third time being a charm. 3 is a lucky number for many people, and I’m counting on myself as being one of those lucky individuals this time around. I would appreciate your positive energy/good vibrations being sent my way YET again! This stuff gets old, doesn’t it?! You think the hospital could work out a deal where I buy 2 and get 1 free. Or at least give me a punch card of sorts for these surgeries. Heck – I’d even settle for a gift certificate to the hospital gift shop as a way of them thanking me for all of the money I have fed into their bucket. Ha ha.

The Copeland family is always down for a good casserole in dire times. Kidding – I’m not dying or anything but I do enjoy food as you well know. This surgery has not yet been deemed a “medical emergency” like the last one, and that’s why we’re doing it at my earliest convenience. Please keep me, my family, and my doctors in your thoughts/prayers again, as it really will be happening soon! It’s on the books and unless my surgeon has somewhere else to be at the last minute, should be a go for April 4th…Thanks so much for your continued love and support, as it really means a lot to me. Don’t be a stranger and cross your fingers for a successful upcoming cranium surgery! And, download the app called Draw Something so we can play – it’s addictingly fun! Happy Spring!

With love and a camel no longer in tow,

Laura

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

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

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