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!