Purple Rage


...You Wouldn't Like When I'm Angry."
 Well, I dropped off my 24hr UFC this morning, asured that both tests would be done: Cortisol and 17OHC. I was praying all day while trying to stay awake that the numbers would come in high and I would get a diagnosis. I didn't think they would be in so soon...

I got and email that they were in so I logged into the hospital's site and low and behold there it was. I read over the numbers at about 6pm and quickly posted them online for other Cushie's to desypher. About 7pm, someone comments that it is missing a crutial hormone: Cortisol. The make-it or break-it cause of my own personal hell. So I quickly logged back in on my phone while going to the movie ticket counter and I had missed that the test was for THE WRONG HORMONE! I quikly shot the endocrenologist an email and went into the theater to enjoy the flik.

Two hours later, I am ticked.

My pulse is high, I am agatated. I didnt enjoy the last 30 min of the movie and dont feel like myself. I usually annalize the heck out of most films, but had forgotten all about it with this change of emotions. I went into the restroom and quickly appoligized for my comments online about how the doctor Freaking cheated me. But thats how I felt. I felt so cheated. I quickly walked out of the restroom and I wanted to throttle the next person I came to, I was so ticked! And I had vissions of kicking the crap out of several people around me and.....I stopped. I thought, this isnt right. So I went back into the restroom and since no one was in there, I lifted my shirt...


Purple dots

Purple Stripes


The color of my dots and marks told me everything I needed to know. And I looked at my phone and saw it was after 9pm. Im getting high. High on cortisol. The hormone that @#$%^&*! doctor didn't order a test for! WTH!? Ooohhh, he should be SO #$%^&* glad he wasn't there....

Needless to say, it was an intesting drive to Chili's after that. Tunnel vission down the freeway. I was aggated, focused but oblivious to anything else. My frustration at why I was frustrated (cortisol) and how stupid it was, made me MORE frustrated! I felt like I was an aderline junkie (technically I am, causes the pains apperently, when I dont have it) and I was getting my fix! But, not in a good way. I want to sleep, but cant. So, purple rage continues. Thankfully, my doting wife understands and knows Im not mad at her. Im just mad. And agated. And its not my fault. Or the doctor's fault WHO DIDN'T ORDER THE F$%^&* TESTS I ASKED FOR! No, its the cortisol. So I "rest" in solice knowing what the heck is wrong with me.

At least, one thing.... can't fix crazy...

Zebra Snippet: Zebra Spoons

A good friend and fellow Cushing's Blogger, actually featured in the related area here, messaged me yesterday after I had been trying to get a hold of her to see how she was doing. That should have told me enough, but I persisted and when she did finally send a reply, she told me about the Spoon Theory. Its not really a theory as much as it is a way to explain how one measures the amount of energy they have for the day. 

For those of you who don't know what it is, you can do a google search for "You Don't Look Sick spoon theory" or click here for the story. Basically when you are sick, or have a disability, you only start out with so much energy for they day. Everything you do saps you of energy. So you have to be aware if that. For Cushing's suffers, the amount of spoons can vary from day to day, especially if you cycle like I seem to do. She told me that she was out of spoons because of how sick she had been. I know the feeling. 

So read the story and thought how it applied to my life and passed out. Apparently, my cycles have switched to somewhat "normal" yesterday and today. Except I feel like its a switch and they are too far apart. Last night, I could barley keep my eyes open, and when I was awoken this morning I was dragging and very sore. Then, as I started my routine, my heart started to pound and the high started. 

Anyway, I knew how many spoons I had today, and the files I am dealing with lately, full of scripts, are taking away my spoons little by little. They have been tough to deal with, but today they are really bad. I feel like i should have stayed home, but the Adderall is helping some. Lets see how long my spoons last!

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

My Letter To The Doctor

"...I cant hold back..."

Well, thanks to  @tealou Here blog here, I finally sat down and wrote a general letter to my current and future doctors to show what has been going on my entire life. Like the picture above says, so far the docs say this is all normal. Enjoy!

Dear Doctor,

I am writing to you before our appointment so that you don’t feel bombarded or ambushed with all of my information – it allows me to structure my thoughts and hopefully will help you see in black & white the weird journey I have been on in the last few years…

After a consult with a doctor in my hometown of Lewisville, and talking with several patients with the disorder, I have come to the conclusion that I might have Cushing’s Disorder.
I acknowledge how rare these disorders are. But I want to be healthy and I don’t know how to get through to you without appearing like I am in denial for a hidden donut stash… or something…. But I know you’re a good Doctor so here goes.

I have spent the last year on dexamphetamine after a diagnosis of ADHD, and after a year I do not think I actually have ADHD. There are a couple of reasons for this:
My ability to focus, and other “symptoms” of ADHD, eg anxiety, inattentiveness, insomnia etc, should not get worse over time. As an adult, it should get better. My ability to function is actually getting worse as time passes.

When initially prescribed Adderall, my anxiety and other anxiety-related symptoms disappeared. The effects wore off within a few weeks. I lost no weight on Adderall and actually gained 20lbs in the year I have been on it.

I received a formal diagnosis of ADHD from Dr Launis and was prescribed dexamphetamine. Again, I initially functioned well. The Dex helped with my fatigue and anxiety and I felt well for a month or so.
After a month or so of taking dexamphetamine, my body quite literally felt like it was “shutting down”. I had debilitating joint & muscle pain to the point where I could not move. I could not stay awake.
I looked on some ADHD support forums online, assuming that it was a side effect and tried tweaking my dex dose, on the assumption that it was a “crash” from metabolising the drugs too quickly. Nothing helped.
It all led back to Cortisol. Stimulants don’t help that at all. So now, I want you to consider this:

Some background:
I was 6lbs 12oz at birth. My mother was a petite 5’5 but would starve herself to be a size 10-12, until she had children. She was told she would never have children and went years with out having a period. Her middle ballooned after her second child, started loosing her hair, gaining weight in her middle only, growing facial hair, and her joints and muscles ached all the time. My father is of normal weight and 5’10 from what I know. My mother and grandmother also have a history of heart problems and both died in their early 50’s. My mother did not have high cholesterol, but had thin skin, hard to heal, diabetes, thyroid problems and sleep problems. She would have trouble sleeping at night and would stay up late trying to sleep while fighting sleep during the day. I was a skinny child & considered “underweight” until puberty.
I then steadily gained weight from the age of 8 to about 150lbs by the age of 11.
I now weigh 310 lbs

I eat an average of 1500-1800 calories a day, often less. I was active in ROTC in high school, but it got harder and harder to participate. I even trained with the Navy training to get in, but by belly would not go down. In fact, I gained weight during that time even though I was on a strict diet and exercise regiment.  Since then, when I have the energy, I exercise. I have a desk job but it is only recent that I have become less active (mostly because of health problems but also because I work long hours). But I am still moderately active.

I wanted to produce a timeline to try and paint a picture of why I am so frustrated. The timeline consists of the major events, but over the years I have had other, general symptoms (listed underneath the timeline) that have been explained away by health professionals over time, to the point where my faith in the medical system is non-existent.

At the insistence of my friends and family I have decided to grow a pair and seek diagnosis for what I suspect. I suspect I have Cushing’s, or a form of Adrenal disorder, that is affecting the thyroid, and is made worse by stress.

Birth-2000, culminating at Age 9 – Extreme, unexplained fatigue & general ill health. Could not move due to muscle & bone pain. Family GP and parents wouldn't listen to me, said it was growing pains.

1989-1999- Was told I had behavior problems early on. Had trouble focusing, would get picked on for being shy, and later for being fat. Would blow up when fed up, at seemingly random times. Always was a sad child. Anger and sad emotional problems persist through adulthood.

1993-present – Unexplained rashes that would ‘flare up’. Originally thought as some sort of allergy. To this day, I have to wash new clothes before I wear them, and usually have hydrocortozone next to my bed.  Bumps all over my arms that turn purple when my stretch marks do. During the day, they are usually pink to skin tone, but when I feel hyper or high they turn purple: both stretch marks and bumps. Clear, skintone bumps also persist. Usually filled with only clear liquid.

1993-Present– Balance issues where I would be standing, and just fall over. Same time period, I started getting bad colds that would turn into chest colds, and later bronchitis. To this day, it happens every time I get a head cold. Skin has hard time healing any wounds and acne is bad and stays bad. Night sweats persistent nearly every night despite the cool temps my mother and I keep in our homes. She had night sweats too.

1993-1999- Would wake up in the middle of the night, my heart pounding, chest hurting, not being able to breathe. Would sit on the floor and rock until it stopped or I had to get ready for school.

1994-1999 – Missed at least a week of school each year due to chest colds and bad mussel pains. Continued to gain weight. Would ride my bicycle to school each day, despite pains.

 1999 Officially diagnosed with Asthma. Was prescribed albutrol and it helps some, but the “panic attacks” still persist. Best described then as, “my lungs stop working on their own and I feel frightened and feel like I have to remember just to breathe.” Due to this, I was prescribed Advair, but still used my rescue inhaler 2x a day or more.

2000-2004 First job at Wal-Mart as a cart pusher. Worked on the lot for 2.5 years, then worked as a grocery stocker pulling pallets. Eventually, I had to move up front as a cashier when the pain got too much to pull pallets around. During this time, I trained with the Navy and would be exhausted each time I would train with them. Started throwing up breakfast each and every morning, uncontrollable diarrhea started and was random no matter what I ate. Was RXed prilosec and then Prevacid for GURD. Steadily gained weight. Lost medical insurance in 2002 after I graduated and moved out, stopped taking Advair. Was engaged, but emotional stress split us up. Met my wife in 2004 after the Navy refused to accept me at 240lbs. Red Cross refused to take my blood donations due to “ Hepatitis” readings in the blood. Was told this was a fatty liver. Hair started to thin during this time also, but has sped up in recent years.

2005- Got insurance through wife’s work. Seen by Dr. Maxwell for GURD and diarrhea. Orders colonoscopy. Comes back normal. Diarrhea persists randomly.

2005-2007 – Started seeing Christian Community Action Doctors, noticed my depression and pains. RXed Celexa, but had no effect. Weight was steady, if not fluctuating. Was told I had high blood glucose, and high blood pressure. Hurt my back from moving, all joints pop at this point, I feel grinding in my knees. Heart palpitations and late nights do not stop. Sleep is getting worse. Have trouble staying awake while driving my school bus. Considered looking into narcolepsy.

2008 – Dr. Lanius starts treating me for asthma. RXs Qvar. Still no Insurance. Focusing on work becomes harder and harder.

2009 – Dr. Lanius RXs Adderall due to job incident. Adderall works for a short time, but stops working. Too afraid to say anything, I continue taking it. July 3rd,  2009, at 11:30 pm admitted to ER for severe chest pains and heart palpitations. EKG said heart was healthy and pain only subsided when morphine was administered. Was wired until then. Admitted to hospital for further tests. Dr in hospital suggested I had Cushing’s and did a CT scan. CT showed nothing, but Dr was unconvinced that something wasn't there. Suggested I follow up with an Endo.

2009-2010 – Weight gain continues despite diet, exercise, and meds. Pain gets worse, fatigue gets worse, night palpitations and “high” feelings persist and worsen. Sensitivity to cold increases. Libido decreases. Hair loss is rapid. Constantly second guessing what people say. Depression worsens. Dr. Lanius doesn't listen to my concerns.

2010- Same chest pains and heart palpitations that sent me to ER happens again. Start cortisol saliva tests on my own, See Dr. Auchus and he allows a 24 UFC, does not believe my symptoms. Finally see pattern in diarrhea. Diarrhea happens when I am sore, achy, and tired. When I feel like my body is shutting down. Normal/Constipated stool when I feel high and wired.


- frequent chest infections when I get a cold
- Slow healing wounds

- Stretch marks that are red/purple especially at night

- Tingling/numbness in hands & feet

- Grey and thinning hair
- Reflux/Gastro pain/symptoms

- Carpal Tunnel symptoms in wrist and fingers.

- Easy bruising/blistering. Get boils & large pimples on body

- Dental problems from an early age

- Nails breaking

- Jawline acne

-Low Libido

- Malaise

- Celexa has had limited effect. ADHD meds help with mood, focus, fatigue and wellbeing some of the time and if I take a day off when feeling unwell, usually cant
- Throughout university & other deadline-based activities, my “3 day crash” after it is over whereby I can’t move, have pain, and need to sleep.
My theory is, after years and years of trying to find an answer, that I have a pituitary mass that explains all the “weirdness”. It may be Cushing’s, it may be something else, but I believe that the problem lies in this area.

Whatever the final diagnosis is, I believe that it is also affecting thyroid. Thyroid makes big arms and at least explains the lack of “looking Cushoid”.

When I read the stories of people and their journeys to a diagnosis of Cushings, I kept seeing mine. Despite what Doctors have said over the years, when I look at the faces, and the subclavical fat, I see my own body. I may not be a classic, typical case, but all I want is to be taken seriously and not called fat & lazy, or a hypochondriac.

So, I have requested a 24 hour Cortisone at the time of this writing. Any other tests you can provide to make diagnosis easier will help.

So, hopefully you’ll see that I am being quite serious about finding a diagnosis and getting well. Because ultimately I am the one who has to live in my skin, and it sucks.
Feel free to call me to talk about this anytime, otherwise I will see during our appointment.


The Weary Zebra

Who Wants To Hurt First?


"...I can't slow down, I can't hold back. But you know, I wish I could..."

Living with Cushing's is not for the weak or faint of heart. Being a self-proclaimed caffeine addict, I can deal with most of my "Highs" (though the one that put me in the hospital scared the #@$& out of me) the lows are nothing I would wish on most people. What is worse than every joint and mussel aching, your head spinning and hurting, and your mind trying to tell you that nothing matters? Living with someone going through the same lows at the same time.

Ok, hold on. I know what you are going to say: "You exploit your wife on youtube and then talk smack about the poor thing behind her back." No. I love my wife. To the depths of my soul, I love her. But... Well, here is the scenario WE thought of to explain the situation:

We were both low. Really low. But felt like we HAD to get out of our 800 sqft apartment on the poor side of town. So we flip a coin to see who will hurt more to drive us there. She looses, she drives. When we get to the theater, we argue to see if she will drop me off or not. I loose, I get dropped off.

When we meet up, we see our film (slowly walking in and out of the theater) and when we exit, we meet... the curb. We look at each other and I ask her if she wants to go first while I stabilize her, or the reverse. She tells me to go first. She holds my arm as I ease the leg that is not hurting as much (usually my left leg) and put weight on it as she eases me down. Then she places her hand on my shoulder and eases herself down using me to help support her.

These are our friends! Not just for wheelchairs anymore!

When we are both low together, it can be hard to do anything because we know each other is in pain and neither of us wants to ask for help. Because the low amount of adrenaline makes us feel inferior and depressed, we dont FEEL like we deserve any help. Its the same reason I believe most Cushing's patients go undiagnosed and drink the kool-aid that they are fat and need to diet. So if you are reading this and ANY of this sounds familer, I sugest you bring it to your doctor after doing some research. Start at www.Cushings-help.com. It is a great resource. And if it makes sense, and your doctor doesn't want to hear you, FIND ANOTHER DOCTOR!

I hope I have been some kind of encouragement! Now to hobble away and fix dinner...

"Oh, there ain't no rest for the wicked,
Money don't grow on trees.
We got bills to pay,
We got mouths to feed,
There ain't nothing in this world for free.
I know we can't slow down,
We can't hold back,
Though you know, we wish we could.
No there ain't no rest for the wicked,
Until we close our eyes for good"

"Oh, there ain't no rest for the weary Zebra... 1am


Well, this is one thing cortisol will do you! I am wide awake at 1am on Sunday. I just uploaded a video to youtube showing you the differences between high and low (well, two in fact. Better GFX to come!) and let me tell you. High is much better than LOW!

When I am low, everything hurts. It hurts to stand, walk, or even move! I have my lows durring work hours and lately its been hard. I have been organizing stacks of scripts and they get really heavy. I used to be able to leg press 400lbs. No way I can do that on a good day, let alone stand on my own. Lifting even my empty cloth lunch box can be rough.

My highs: Well, its like drinking a case of energy drinks in every since of the thought. I am wired: panicky. I feel like I am being chased while sitting down. Most of my pain is gone, but from what I understand its not a good thing. Cortisol not only turns on my adrenal glands giving me the flight or fight response and stressing my heart and body out, but also eats at my mussels. The fact I may not feel pain is due to its anti-inflammatory properties. So its killing me while acting like a pain realized. So I dont know Im dying! All the while making me fat. Fat and happy, right? Now if only I didn't have to work all day, I could catch some really good anime on TV and catch up on my netflix! Oh well, gotta try and sleep. I still have to set up the sermon projection notes for church tomorrow. I dont think they will let me bring my gallon of pee with me so then I gotta rush back and finish the GFX for the YouTube channel.

"Oh, there ain't no rest for the wicked,
Money don't grow on trees.
We got bills to pay,
We got mouths to feed,
There ain't nothing in this world for free.
I know we can't slow down,
We can't hold back,
Though you know, we wish we could.
No there ain't no rest for the wicked,
Until we close our eyes for good"