Afternoon Reminder

I just got the call, you know, the reminder call. The call you get the day before the appointment. I'm shaking in my slippers!

I don't know why I'm so scared that they are going to tell me I don't have Cushing's. My IM tells me that I do! She was sure in December and even documented it in her files. It's just that she isn't sure how to treat me after the diagnosis and she has only read about people like me in textbooks. And, of course she has been doing lots of reading since her first "Cushie" walked in. She believes a lot of my story because she has known me for five years so she knows I don't come in for the sniffles and I don't normally look like a human balloon. Earlier this month she did convice the rheumatologist that she might be right about Cushing's too since I don't have lupus or arthritis that's causing all these aches and pains. And I do have all the medical tests on my side. Okay, see what I mean about rambling Cushies...if you made sense out of that I'll give you a blue ribbon...

So why am I scared? It''s kinda like in high school when you knew you were the fastest runner but you still got nervous the day before the race - I think. I mean I know I have all this evidence on my side, but is it solid? What if all this is just a freak thing and I wake up like Dorothy in The Wizard of Oz and it's all just one big headache? Deep-down inside I know something is wrong with me, never in my life have I felt so weird, strange, ill, whatever, so I guess that's why I haven't dropped it yet. I have to believe that I'm not totally insane.

How could one want to feel like this? They say that mentally ill people may make this stuff up - why? I would much rather run a marathon and get attention than sit here full of aches and pains. There are far better things in life than to try and get attention this way. I miss all the fun I used to have even simply walking around everyday in the fresh air is better than being trapped here in my apartment. Bumping into someone at the coffee shop and getting hot coffee poured all over my legs is even better than sitting here. I love people, crazy, funny, all sorts of people. You can't pay for that type of interaction and I certainly don't get it going to the doctor's office or looking out my window. Although I will say people do strange things when walking around parking lots when they don't know you're looking. If you're lucky one day I'll share.

Anyway, I'm just being a normal Cushie, I guess, having strange thoughts and normal ones for someone in my position no matter the disease...damn cortisol making me ramble...

First of Many Today...

I'm sure you'll read a lot from me today...I'm beginning to freak out about my all important doctor's appointment tomorrow with the new endocrinologist. Please let this doctor see that I'm not crazy and I have two MRI's showing a tumor to prove it! So far I've seen six doctors including endos, gynos and a rhuematologist and only my Internal Med doc seems to believe me enough to keep seeing me. I wish she could just treat me! My endo tomorrow will be the third endo and this time I'm going with a woman - hoping she'll be more open and not tell me "I'm hormonal" or "It's my size" or any other strange reason the men had for turning me away. Hello, I have a tumor in my head you morons!

I have had 4 or 5 high 24-hour urinary cortisol tests and a few other questionable hormone levels...what else do they need? My blood pressure has hit the roof and my sugar levels have been strange I've had two kidney infections and I take more pills than I have in my entire life...all for someone who had been an entirely healthy 31-year old woman just 6 months ago...

Okay, I'm off to throw up or cry or all of the above more later!

Drug Abusers Get Off Easier

Over the weekend there was a news article that really pissed me off…don’t worry I plan on letting the reporter know. The article discussed the possible implications of steroids but failed to mention Cushing’s! What the hell is he thinking? There are possibly millions of us out there suffering and he can’t do enough homework to look beyond shit that we all already know about…talk about a lack of creativity…no wonder no one watches the news. Between that and the war who the heck wants to watch a bunch of repeat performances every night. And to think I thought it was just PR that was inserting drug and disease and repeating the same crap over and over again, I guess the journalists are too. Okay so let’s get you some real information.

The article appeared on Saturday, written by a reporter at HealthDay, a fairly well known internet news source, discussing the possible long-term risks of steroids. The article clearly mentions Jason Giambi’s pituitary tumor, and while I am not saying that Mr. Giambi has Cushing’s it was a perfect opportunity for the reporter to provide an education to his readers. In my opinion this is a huge missed opportunity to shed some light on both drug-induced and non-drug induced Cushing’s. And yes, factually not all pituitary tumors are Cushing’s it is safe to say that those related to steroids and the adrenal system are highly likely to be Cushing related!

The reporter thinks that changes in libido, voice and liver size are huge health issues and boy do I have a bit of an education for him…he should do some reading on Cushing’s. Let’s see high blood sugar, huge weight gain, high blood pressure, insomnia, vision changes, and that’s just the beginning…people can die from this crap if it goes on too long. Okay, sex drive is one thing but you don’t die from not having sex…you might think you will at some point but news flash – you don’t! And if he needs medical science to back up all this, fine do a little home work and even just read through my blog once and he has it. UGH!

To make matters even more humiliating he provides links to the National Institute on Drug Abuse…and what do they say the risks of steroids abuse are…AIDS…because that makes sense! If someone gets proper treatment for AIDS it is possible for them to live a longtime with AIDS and possibly like Magic Johnson for an entire lifetime. How many times though have you heard of a steroid user getting AIDS? If someone with AIDS walks into a doctor's office they get treatment but if someone with Cushing's walks in we get looked at like we have five heads and they won’t even give me pain meds since the Advil isn't working. Trust me I know AIDS is bad but so is Cushing's - if left untreated we all die - AIDS sufferers and Cushies alike! I'm just trying to make the point the government is saying the biggest threat of steroids is AIDS, perhaps it's because for them it's an easy answer because they haven't done the homework! Ah, and they say there may be some mental depression and liver problems related to steroids…okay so that compares a little to Cushing’s but at least if someone admits to steroid abuse a doctor doesn’t tell them…

• “you’re fat”
• “you’re psychotic”
• “a hypochondriac”
• “just a little stressed – take a time out”

Sadly all true comments for someone with Cushing’s…how is it fair a drug abuser can get medical treatment and a Cushing’s patient gets emotional abuse? Hey, and maybe they are right, I just wanted to ask the question.

More websites that piss me off…

http://www.steroidabuse.org/

www.drugabuse.gov

Identity Crisis

Yesterday was a very hard day, probably one of the hardest yet. As I sat on the end of my bed drying the 50 percent of hair I have left in preparation for my photo shoot and day of “fat” shopping I lost it. I mean, completely lost it. Now I know you have two questions. 1) How do I know I have lost 50 percent of my hair? 2) Lost it, how?

Being the science geek that I am, I have seen a recent decline in the pumps on the shampoo bottle from four to two. The pumps are on a rapid decline to 1.5. It also now only takes me four wraps with a hair band vs. that of the previous two – please note I use a new hair band so that one can not state that it may just be a stretched out old one. We must be accurate!

Lost it, hmm. Well, let’s just say my mirrors are lucky to still be standing and my fists are lucky to not be a bloody mess, As I sat to blow dry my hair I longed for the days when it would take hours and I couldn’t see my scalp. But as I sat there and it fell limp on my shoulders I began to cry. And maybe because of less hair I saw the enormous face staring back at me. I stumbled off the bed in a fit of tears and looked at the unfamiliar swollenness that had become my face. No wonder people were beginning to look at me weird and people I knew didn’t recognize me.

I searched hard into that face and ran my fingers like a blind woman over it trying to find a part of myself. Even the trademark green eyes looked foreign hidden behind puffy eyelids which remain that way all the time now. I began to pull and stretch look for any part of me as I stood naked in front of that mirror looking for any part of my body that resembled that of my former athletic-self. As tears poured down my face and my skin trembled, I pulled and tore at myself trying to find just a piece. An anger and horror I have never known sliced through me like a jagged knife.

Who could possibly understand such pain at not being able to see a piece of yourself? Such sadness and pain and anger! I wanted to scream! Who was I and where the hell had I gone! Where was I in this horrible body that had become my own?

I know the outer shell of your body isn’t who you are but it is a symbol of who you are and the kind of person you aspire to be. I don’t aspire to be a slovenly homeless person!

I curled up on the floor and reached out to anyone. I needed someone to tell me I wasn’t crazy…a “Cushie.” I called a friend of mine but she was in the shower. I felt a bit stupid since her husband answered but since he lived through this once already he understood. So I dialed another number of a good friend, and while he can’t possible understand the horrible emotional pain of this disease (and at times I think he thinks I’m crazy) he at least made sure I didn’t kill any of the mirrors. He “gets it” or at least me which is very important. (Thanks!) Anyway, she called back and immediately I broke down because I knew she understood and I felt safe again, like I wasn’t just seeing things and I wasn’t crazy. I can’t even begin to explain the torture this disease plays on you.

After a few moments I had the strength and wisdom I needed to go shopping for some clothes the “fit.” I bought a couple of outfits for comfort (for those of you who have not read cashmere and yoga pants please read).

And then came the hard part, the photo shoot. Well you see the results posted here and a picture is worth a thousand words. Again I struggled viewing the results of these shots since it brought to me a strange reality that I wasn’t that athletic girl I had known but in four short months have turned into this monster who I don’t even recognize. More tears and anger fell and I’m sure more will everyday as I try to get dressed.

I was asked whether I still wanted to post my photos. I guess that’s the point of taking them, so you don’t think I’m crazy and you can see the pain that it may cause someone. I don’t look fat, I look sick! It’s probably the scariest thing I have ever done but if it helps you understand than I have achieved my goal.

I think today I’ll cover the mirrors. Some of you will call that stupid or ridiculous, I call it self-preservation.

Let's make it easy...with and without dimples. 

A pose stolen from many brochures...you get the point. 

As promised...my CUSH debut...yikes! 

A Little Fate?

During this journey I have come across some very interesting people, other ‘Cushies.” It’s amazing the things these people will do and say for someone they have never met and most likely never will.

As fate would have it, in early November I stumbled across the Cushing’s Support and Research Foundation (CSRF) website when I was trying to define “high cortisol.” What fortune. I found others just like me, well except for the fact that they have already had their surgeries and were no longer suffering from the effects. But I can’t tell you how many times in the first conversations we all say “holy sh*t” and “me too” and “YES!” All without having any sort of stimulation.

I still chat with these people weekly as I continue on my journey and hopefully we can have one big party when this is all over…as one of them put it I’m back to "skinny bi*ch" status. But back to the story…

It seems this week brought more stimulation. I spoke with someone from CSRF this week about getting us (Cushies) more awareness and some help after sending her to read my blog. As it turns out, I have a lot of ideas and they need the help. Fate has funny plans for us. Within hours I spoke with another member of the team and yet again I was saying YES! But while they were interested in my help they were also interested in getting me better! They referred me to a few doctors to get some help. A couple of the docs happen to be at some of the largest medical centers in the country. I made the calls and am sitting on the edge of my seat waiting for the day the call comes that says “Dulcie, the doctor will see you now.”

Perhaps these are momentary friendships meant to get us through hard times. And maybe these are just strangers just lending a hand knowing we selfishly will get something out of it for ourselves. Or we just like the YES factor!

Or maybe it’s just a little fate? I’ll let you know.

Going Public

Writing about this is easy; I get to hide behind this wall of “ink” and language that serves as a barrier between me and the world. And even between me and my friends. I can’t tell you the number of lunches, I’ve canceled because of how I look and yes, because of how I feel. Mostly because of how I feel with a secondary reason of how I look but usually it factors in somewhere.

Some may call it vanity but it’s more than that. Maybe it’s some sort of weird shame. When you go to doctor’s everyday and they tell you that’s it’s because you’re fat, or they make you feel crazy when you have a list a mile long of things that are wrong with you, you begin to question your own sanity. I’ve been to more than half a dozen doctors now and only one believes my story and it’s only because she’s been around for five years and knows that all these problems are completely not normal for me. Good thing cause she keeps me somewhat sane! I’ve never been “heavy” or “looked pregnant” or had high blood pressure or been a complete basket-case to the point my hair falls out. Please I do yoga and meditate and climb big mountains when stressed. I eat healthy and enjoy nice bottles of wine – I don’t curl up in a ball at the first sign of trouble.

People ask you how you feel but they don’t really care to listen to the answer these days so when you give and honest “Cushie” answer people can’t handle it. Many people no longer call or email to see how I’m doing. Trust me I get it, this is hard. I live here every day and I know this is depressing. I know better than I would ever want anyone else to. I get it. I guess part of writing this is in hopes of trying to get you to “get it” too. I don’t need you to sympathize or really understand. Like losing a child or a loved one, no one can really understand. But you can try to be there. You can just read, or listen, or just sit with me. It doesn’t take anything special - no fireworks required. Just knowing you’re still there gets “Cushies” like me through the day. So please keep reading and I promise I’ll try to write something funny or demented here and there but just keep coming.

Anyway, this weekend I plan to go even more public. I’ll be posting pictures…if technology cooperates. Yikes, this is scary because even before all this I wasn’t one to discuss my feelings and take photos of me and now I’m showing the entire world.

Be forewarned they aren’t for the weak at heart but stay tuned…

Help, I've Fallen and I Can't Get Up!

Okay, this is so not funny. Last night I forgot to mention that I fell out of bed. Literally. I’ve been having major pains in my muscles, bones and joints lately but last night it came across loud and clear – “Help, I’ve fallen and I can’t get up!”

As I tried to get out of bed for one of my many nightly runs to the bathroom I fell. Yup, flat on my face as my knees buckled under me. It took me a few moments to figure out what had happened to me in the pitch blackness of my bedroom but then the sudden urge to pee came back to me! Yikes, I have to go!

Flashes of that horrible commercial with all the old people pressing that ugly necklace crying out came crashing through my head like a tsunami (bad reference I know but I couldn’t resist, besides that’s what my bladder felt like). As I pulled myself to my unsteady feet and wobbled to the bathroom I began to prepare. As I began to sit a terrible thing came over me once again. I couldn’t get my knees to work yet again, this time to bend. There I was in the darkness of my bathroom trying to pee but failing to be able to sit. All of a sudden I plummeted with such force I was sure that more than my pee was going to go down with the flush. I fell onto the seat. Have no fear, it only took me 20 minutes to arise from the thrown and roll back onto my bed.

Needless to say the rest of today was a trip, the knees still aren’t working and I even had a friend help me buy heating pads to wrap them in since the ice I managed to pack them in hasn’t helped.

A friend kindly suggested that I get a walker to leave by the toilet so that I don’t fall in or get an “old lady toilet.” I guess there is a strange one with handles? I think I’ll leave that for another day and hope the fates are kind.

Who knew at the age of 31 I’d be living in the body of a 90-year-old woman?

Wide Awake and I'm Not Dreaming

Help, it's 3 a.m. and I'm not sleeping. Which means that I'm not dreaming. The truth is that I haven't been now for months. At first I thought it was the trauma of the car accident I had in May. But months have gone by and I'm really not that fragile. I spend hours awake everyday and only a couple asleep. Literally only 1 -3 hours and sleeping pills don’t help. You're probably asking why I'm I writing this, the truth, I'm not sure. I just can't sleep so I thought if I spent a few minutes here with you that maybe you'd understand the what it's like to be me for a few minutes and I'd get some comfort and be able to sleep. Like some cheap version of a teddy bear I once had as a child. Or maybe I'd get whatever thoughts I had out of this head and be able to get some peace-of-mind but there really no thoughts are keeping me awake just some cortisol running through my veins like speed on a racetrack. Damn, if only I was a car we'd all be rich!

Things I've done while not sleeping over the past few months:

• Watch cartoons, mature I know but brainless TV can sometimes make you fall back asleep
• Read books that I can’t remember since the cortisol seems to also rob memory
• Write strange emails to friends
• Write strange blogs to people who may never read them
• Pet my cat for endless hours, our relationship has grown very strong
• Thought about new inventions to get rich
• Tried herbal pillows and lotions and other strange things, the cortisol always wins but I smell a little funky
• Showered and taken bathes, my neighbors probably wonder what happens in the rooms next door when I bathe at 3 a.m.
• Paint with trembling muscles
• Research other possible cures and ways I could possibly do surgery on myself since no one will do it for me
• Try to find reasons why I may be crazy and reason why I am not...I have found other people who have Cushing's and apparently we all do this so therefore I am not until we prove otherwise

Things I have not been able to do:

• Laundry, the dryer wakes people
• Take out the trash, the garbage chute also makes noise
• Play music loudly and dance, too many reasons to count
• Dream about being better, especially lately the road less traveled is quite long these days
• Go for hikes or long walks
• Bake cookies, now come on, I can’t wake the neighbors with the scent of cookies at 4 a.m., that's just rude because I don't share
• Sleep
• Dream
• Snuggle

So count your blessings that you can sleep and dream even if they aren’t always the best dreams. Okay, I think I'll go back to my cartoons. Care to join me?

When Vampires Attack

Bright and early before sunrise they got me again those bloodsuckers! They took 13 vials of my precious blood with little shame.

I helped her out though. She looked at me a little puzzled as I rolled up my sleeve and began pumping my fist. "Are you okay she asked?"

"Of course," I answered with a smile. I pointed gently to the track marks on my arm and said look it's all marked for you just point and shoot.

With a bewildered look she put the tourniquet on my arm and began to pile the vials next to me and commented at the number. I reassured her it would be no problem; I'd been doing this number almost every week for the past three months now.

With her fang poised she rubbed my arm and shot! 20 minutes later she had her fill and asked for me to make my deposit; you know the one in the bathroom.

I guess the blood wasn't enough she had to have my pee too!

Really One-in-a-Million?

So they say that Cushing's patient are only five-in-a-million but is that really accurate? Recent evidence would say not. At the most recent endocrinology meeting scientific evidence was presented indicating that people with diabetes, high blood pressure and those who are a tad overweight. Now that number doesn't include those who take steroids for medical purposes or those on steroids, including all those major league baseball players who seem above it all. If we add up all the numbers that certainly adds up to more than five-in-a-million to me. Now I know I'm special but really, I'm not "that" special! Let's take a look at the facts:

• According to a well documented study pituitary tumors occur in 22.4% of the population globally - don't worry not everyone has a problem with them
• At the most recent National Institute of Health Consensus Conference on Adrenal Incidentalomas (another way for one to get Cushing's) it was discussed that at least three percent of adults over the age of 50 have some form of adrenal mass. While most adrenal masses cause no health problems a small number can lead to serious hormonal issues and approximately one out of every 4,000 is malignant!
• Three - five percent of diabetics may actually have Cushing's (meaning that Cushing's may be causing their diabetes) according to a study out of the Department of Endocrinology, Hebrew University-Hadassah Medical Center, Israel
• In the December 2003 Issue of the Journal of Clinical Endocrinology Metabolism shows a link between Cushing's and diabetes and calls for further study
• A study from Europe that is awaiting publication indicates 11 percent of obese people may have Cushing's - meaning that they could be overweight because of Cushing's!
• A study from Japan shows a direct correlation between Cushing's disease and hypertension - could the epidemic in the US be partially caused by Cushing's?

Now let's be real, not all those numbers are hard numbers but even if only one percent of them were that would be at least a couple of million Americans. And we haven't even touched the asthmatics who take steroids as part of the medical treatment or the baseball player and other athletes who think it's cool to hit one out of the park.

In case you don’t know there are approximately:

• 50 – 60 million diabetics in the US
• More than 15 million asthmatics in the US according to the Centers for Disease Control and Prevention
• In 2000 there were more than 59 million obese people in the US
• 1 in 4 Americans has high blood pressure

That’s something to think about if you ask me. Don’t get me wrong I like being one-in-a-million but I don’t need to be a “Cushie” to be that!

Sympathy for Men

Okay, listen up all you men; I'm only going to say this once...I finally have some sympathy for you!

About 50 percent of all men will begin to lose their hair by the time they turn 50 years old and for the first time in my life I finally feel bad for those men, because let's face it, we all don't have sexy heads! While some men can pull it off how many times have you actually seen a sexy head? And even more often how many times have you seen a sexy woman's head? The reason for my recent obsession with bald heads? For those of you who want more science on the balding head here's a link from MerckSource.

Since Cushing's I have been gradually losing my hair, I know quite sexy I must say to wake up in a pool of your own hair every morning. And to put some icing on the reality cake, the doctor on Friday was kind enough to ask "So, Dulcie, do you seem to be losing your hair?" Why I asked. She rapidly pointed out that it was all over my cashmere sweater that was pulled tightly over my bulging belly and scattered across her sanitary examination table. Nice!

So what advice have I received since noticing this hair loss?

• Cut it off - it'll fall out anyway, yes because I want to see the holey patches all over my head
• Keep it long that way you can cover the holes with a pony tail, good except it's also breaking off and beginning to look like someone’s ratty horse
• It can't be that bad
• Don't worry you won't look bad with a shaved head - yes because moon faces are just as attractive painted on bowling balls

So I started to look at balding men as key examples on how to deal. I could do a comb over. How do they do that anyway? I could cut it really short and spike it but I fear the investment in hair gel could break me. But I have to say thay are much better examples than the advice I have been getting from people. Sure there are lots of ads for mircles treatments and transplants but who can afford those?

So men, I guess all you'll get from me is sympathy. And for those of you with nice heads, a little bit of jealousy.

Cashmere and Yoga Pants

Isn't that what every girl wants to wear...fat chance. It's been about a month and a half now since all my normal clothes have ceased to fit and while all my friends and family say it must be great to sit around all day in clothes of comfort I beg to differ. The operative words here are sit and comfort. While there were days in my past I would have begged to also have such days of leisure these clothes of comfort are not necessarily providing that for which they were designed.

Let's first address the comfort factor. These clothes are stretching to fit around a body that is no longer mine and is one of some woman who has been impregnated by an alien. In the past month my waist has grown such that I look as though I am five months pregnant. Kind of funny for a girl who swore she never wanted children - now I know that if this is what I look and feel like I want nothing to do with it. Now even though I only look five months I have the stomach pains and problems positioning myself as that of a woman who is about a month overdue. Yes, my belly has no room for food and often it would like to return upon the trail that it has traveled; there is little to no room for my lungs to expand and I often find myself having to catch my breath after stating a sentence or two taking away any pleasure I had of talking on the phone.

As with most Cushing's patients, I thought I was going insane and had possessed the body of a real, live couch potato. Yes, a living, breathing potato. That could be the only reason I no longer had the muscles of a runner and avid athlete to pull myself off the toilet and out of bed. And did I mention that I now walk like a 90-year-old woman. The only difference is that I still know I have to urinate and attempt to get up and go the six or seven times a night as a result of the cortisol running through my body. No worries though, I don't sleep more than 3 hours a day anyway.

So on Friday as a sanity check I went to a fabulous rheumatologist to check my various joint, muscle and bone aches and pains. Let me just say that I thought when pain got to a certain point you were supposed to pass out - yeah right! I say fabulous because she spent an hour with me and even went out of the room to call my Internal Med doc to make sure I had all my marbles. I do have them just in case you were wondering. Well the good news is I have no disease that she would treat but after speaking with my IM she agrees that I have Cushing's disease and can't understand why the endocrinologists aren't seeing it. She did "pad" it by saying she'd only see people like me in a textbook but it was very clear I had a lot of pain and no comfort despite the cashmere and yoga pants.

Okay the second point of this is the sitting around. I've been sitting here since December officially and I'm bored! I guess that's part of why I'm doing this to entertain myself and maybe someone in the vast internet world will find me entertaining as well - who knows as a good friend told me. Anyway, I started being robbed of my life and started sitting here technically in September when I could no longer workout since I began have very bad muscle tremors and spasms that would send me flying off the treadmills - gyms don't like that very much. And then I got my first kidney infection and docs don't like it much when you exercise too much with those either since you can become very dehydrated. In October I tried to go apple picking and basically passed out in the field since the activity seemed to be too much - go figure. The few blocks I walked to work in New York City also began taking their toll and my feet soon began to swell outside of their shoes in November. Damn, I just bought those shoes for my new job and they were nice! By the end of November I had passed out literally at work and told to go home and since then I have been sitting here. In the past I would pick up a book and read but these days I can barely remember the last couple of pages I read, read a recipe, write a few sentences while remembering what it is that I wanted to say...you should see the notes I need to write this...so doing a lot of the things I would do while "sitting" here in my past life are no longer enjoyable to the degree they once were and are now a struggle. I have read on several websites and medical journals that cortisol can do funny things to the mind like this. Other patient testimonials have also told me that this is true. I have added a link to a Cushing's website that I find the most useful and maybe you'll find it interesting as well.

Off to find comfort and sit here...

Hey, notice I have dimples and big eyes...in the future CUSH shots you'll notice these have gone away! 

Me before the Cush happy and healthy in the Florida Keys 

In The Beginning

Okay, so here's a story I should have started to tell about five months ago. And to keep this from being to long, you can read my profile about my stance on healthcare and my experience.

Anyway, I pitch, sell, convince people to write, produce and otherwise tell the public about new scientific advances, medicines and other things they should know about cancer and other horrible disease for a living - yes, I'm a public relations professional and I know some of you will stop reading already. So stop.

This isn't a story to be sold or for any benefit other than to help others and frankly myself - it maybe the only way I get the treatment I need! Just like you could be one day I'm someone who got caught in the system. A system that’s supposed to help us if we know how to use it – and trust me I do. A system that has probably left millions of people like me with possible life threatening conditions in the lurch because docs don’t have the time and can’t deal with us. You know, the people who they are there to help.

I thought when you hit 30 your life was supposed to fall apart, at least that’s what my friends made it sound like. Your hair is supposed to change, your skin, everything you loved in your 20s was going to be different. And wow, did I get the surprise of my life, no more than a of couple of weeks after my birthday did I get a bad case of pneumonia, now I only tell you this because of the nasty steroids they put me on, it really has little to do with the turning 30 picture. I gained a handsome 20 pounds on those steroids which led me on a rollercoaster I could never imagine. After coming home from the most amazing trip of my life with a great guy I was about ready to slit my wrists while taking these horrible meds. How does one go from blue skies and sandy beaches and the best times of their life to a nightmare waiting to happen? I was at the top of my game and all of a sudden I wanted to end it all – thanks goodness I was only on them for a could of weeks to protect me from the asthma I never knew I had until I moved to New York City after college. Anyway, life was moving on and so was I, eventually the effects of the drugs wore off and I was back to my cheer up and conquer the world self.

Later, in May I was in a serious head-on car crash, hit by some 19-year-old on a sunny Saturday afternoon. It took awhile and some rehab for my arm but by July and August I was thinking life was getting back on track. Little did I know things were just about to turn for the worse.

As part of my rehab and desire to stay in shape I began working out like a mad woman often doing 3-5 miles of running and then another 10 – 20 miles on bike on top of abs and strength training. I wasn’t losing even an ounce! My hair started changing, becoming dry after years of having sleek “oily” hair. My skin began to thin and begin getting cystic acne. Ouch, I hadn’t had that in a long time and all because I turned 30 I deserved this radical transformation. I had no idea that this was the beginning.

In September I started getting ill. So ill in fact that I thought maybe I’m pregnant. I had a kidney infection and passed it off as one of those things I get once and a while. I started gaining weight – my breasts went from a size 'c' to a 'd' overnight. I was constantly nauseous and had a migraine every day. I had all the classic signs of pregnancy and my belly even started to expand. It took my doctors three or four blood tests, five urine tests and a pelvic ultrasound to conclude that wasn’t the case.

Finally I went to my Internal Medicine (IM) doctor and she ordered a standard order of blood tests. My levels for white, platelets and sugar all came back high. High sugar? I always was told I was hypoglycemic, how could this be? So she referred me to an endocrinologist. After my initial tests for him I walked in and he said “You look like you have high cortisol” even before reading over my test results. We need to run some more tests – he didn’t think I had diabetes or thyroid issues. He walks out and I’m given three very large orange containers and a list of blood tests that I must complete ASAP. Yikes, that required a week out of work for a job I just started in October but I was already growing quickly. I had gained about 10 pounds in the past month while eating a 'veggie' diet. PS – I was no longer able to work out – I was getting muscle cramps and spasms like someone who had never gotten off the couch.

Well my tests cycled back lower as it often happens with people with cortisol issues and the endo dismissed me and told me to go back to my IM. Thank god I did! She reviewed his tests and spent almost and hour and a half just talking about me and my symptoms. She said she wanted to check something out so she left the room. About 10 minutes later she came back and said you have high cortisol and we need to figure out where it is coming from. Now being the PR and healthcare savvy woman that I am I immediately came home and said – what the hell is high cortisol and what does it do?

The answer: Cushing’s disease or Cushing’s syndrome.

My doc ordered the same tests repeated and ordered an MRI of my brain – scary stuff. The day I came in to get my results my blood pressure was very, very high and I was immediately told to lay down and relax. Now my doc and nurse both know that usually I’m the freak that has a blood pressure of 90/60 or something. I was a bit weirded out. They came back and the tests came back the same again. My doc and I chatted a bit more about my symptoms and at this point the muscle tremors I had started having were so bad they couldn’t take my pulse. She gave me some meds for the blood pressure and then told me that my MRI showed a mass on my pituitary gland – UGH the master gland! It looks like I truly have Cushing’s disease (indicated by pituitary tumor vs adrenal)!

She is still monitoring me until we find an endo with experience in treating possible 'Cushies' like myself but it has been a hard road of excues from doctors and healthcare professionals stating – we don’t take Cushing’s patients; oh, we don’t take you insurance; and a number of other excuses. Luckily, or so I thought, I used my pharmaceutical connections and found a doctor who specializes in Cushing's and I saw him in December! What a great birthday present! Then on to find a neurosurgeon who has done multiple pituitary removals…apparently only about 10% of neurosurgeons do lots of them and you need an experienced person.

Well he didn’t really pan out either…he told me my cortisol was high but not high enough and it was high because “of my size.” Duh, I was never going to a doctor before I ballooned up for no reason, stopped having periods, and my life completely fell apart! By the way, I had a second MRI confirming a possible pituitary mass and still no help from these crazy people who are supposed to help. Why can’t they just do the sinus sampling and test the mass to see if it is causing all these problems…if not move on and discover what is! I’m on a second blood pressure medicine now as well as a medication to prevent the daily migraines since they were so bad I thought I was going to stick and ice pick in my head. Did you ever hear those stories about the person who just stabs themselves in the head and dies thinking it will release the pressure and the headache – well they die but the headache is gone.

Today I have a CT of my abdomen to check my kidneys, pancreas, and adrenal glands. Yucky tasting stuff that I have to drink but if it gets me any closer, what the heck. I don’t have yet another appointment with another endo until February, that’s the fastest anyone would see me who takes insurance. I tried finding someone who doesn’t but that takes a while too and costs an arm and a leg which I’d like to keep at prices of $350 and above cash at time of visit. I don’t know about you but I can’t afford a doctor’s bill like that especially when I’m going as frequently as this.

Why is this important? Here may be some answers other than my plight and fight to find appropriate medical care for a life-threatening condition in the US. I'll cover these and more!

• One key contributor in Cushing’s is the abuse of steroids – could these athletes be giving themselves a life-threatening condition for a season of fame?
• Recent studies indicate that 3-5 percent of diabetics actually have Cushing’s disease and how do we tell who has the diabetic epidemic or the Cush?
• A study in Japan looked at hypertensive patients and found that a number of them also maybe Cushies resulting in their high blood pressure – the new epidemic in the US
• A study from Europe (I can get you exact countries) found that 11 percent of obese people my actually have Cushings!
• THAT’S A LOT OF PEOPLE FOR A DISEASE DOCS CAN’T RECOGNIZE OR REFUSE TO BELIEVE A PATIENT HAS!!!

Facts on me since this all began and Cushing’s:

• Gained 30 pounds in less than five months
• Normal clothes don’t fit and I need to wear yoga pants or suck it up and by maternity because my arms and legs are sticks – I look about five months pregnant and have had many people ask – I got sick of saying no and having folks say – well you must like food – so I just say yes, I’m due in May
• My hair is falling out
• My skin has turned acne ridden and so thin if I scratch myself it takes weeks to heal
• I’ve had a bruise since July (poor healing)
• I have a mass on my pituitary that initial measurements said was 6mm – the pituitary is only 9mm
• My blood pressure has risen to alarming levels and I’m now on meds
• I sleep only 3 hours a night even though I am completely fatigued and tired
• My muscles are in constant tremor and I can now only do very slow, short walks – no more running and biking!
• I have a moon face
• Facial hair
• Missing periods
• Excessive hunger and thirst
• Frequent urination and unexplained sweating
• Ahh, memory loss – like where’s the toilet paper and stamps
• 2 Kidney infections due to a lowered immune system
  

Oh, and more on the battle for disability and life later!