D-Day, Zero Hour

Well, the day is finally here. The day I will start my new life. I do not know a life without Cushing's so its a bit intimidating. But I know it is for the best. Im so hungry, and I have sinus drainage so my stomach is not good this morning. I didn't sleep well, tossing and turning, but I did sleep. I woke up sore, but to a smiling round face wishing me a good morning! Im excited and very positive, even with the good/bad news from yesterday. 

I got to see my MRI yesterday and it looks like it is larger than the scan original said. It is 3.5mm thick. But it looks like 6-7mm long, nearly half of my 13.5mm Pituitary. And it is close to my artery. Its GOOD that he can see it, but that large and that close to the artery, well he has his work cut out for him. I dont know when my next blog will be, so keep up with the Caring Bride site for Mrs. Zebra's updates. I love you all. Time to shower and get ready...

"And I think it’s gonna be a long long time

Till touch down brings me round again to find
I’m not the man they think I am at home
Oh no no no I’m a rocket man
Rocket man burning out his fuse up here alone"

The Weary Zebra

See and download the full gallery on posterous

Posted via email from The weary Zebra: Zebra Snippets

Courage

A good friend of mine and I talked over Facebook yesterday and she suggested I make a list of things I hope will happen in my life. Ive had this disease my entire life and dont know what "life" is really like with out Cushing's. But I KNOW I need this surgery so I can have some sort of chance at a "normal" life.
But this morning, I went to church.

My body said no. My body needed rest. It did not want to get out in the heat. It did not want to walk or climb stares. But I knew that I would not be able to go after surgery for quite some time. The congregation prayed over me and people actually care, even though they have no idea what is wrong. But what surprised me was that a woman stopped me on our way out. Her daughter was told she has a pituitary tumor, has nearly ALL the Cushing's symptoms, and has an endocrinologist that is messing with her. So I told her about Dr. Ludlum and his Cushie Camp and that her daughter needs to get there ASAP! I will be emailing her the info shortly.
Me having this disease has brought, including this woman, 4 people to Dr. Ludlum and closer to getting their lives back. If that is His will, so be it. I will be an ambassador of hope. And Courage. If I can do that, if I can bring others to doctors or at least to knowledge that they have a chance at getting cured, at a normal live, it makes it all worth it.
I hope...

to have children

to direct major motion pictures as well as inde films

to travel the world

to visit all my new, Cushie friends

to work and march for a better future with my comrades

to take Mrs. Zebra out dancing

to get Mrs. Zebra "cured"

to cook huge meals

to mow my own lawn

to have the energy to mod my own car

to feel like my own age

to not be winded by walking from my car to a building

to move to a cooler climate

to be happy

I love the quote in the picture above. There ARE more important things than my fear.
The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

Cushing's Study Today

Well, I go to the Cushing's study here in Dallas tonight. I was asked to write about when my symptoms first started, how Cushing' s has affected my life, and explain two instances where Cushing's has made life difficult. These questions were to get me thinking about this for the interview tonight. And the answers have to match. Thats what they said in the instructions. If they didn't match, I wouldn't get paid. The obviously have never met a Cushie before.
Anyway, I was also told to make a collage to help explain to someone what Cushing's means to me. What it is like. I couldn't fit it all on the 17X11" paper I used, but most of its on there. So I thought I would share it with you all. Maybe you all will have fun guessing what they all mean?

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

Official Diagnosis and Surgery

Well, I got the call today....

I knew it was important when they called Mrs. Zebra first, and conferenced me in. Kind of like when you are called into the principal's office and your mom is standing there when you walk in the door... yea, that kind of stomach turning nervousness... but I knew what he was going to say. Why so nervous...

I went to the back and Dr. Ludlum got on the line.

His pauses as SOOOO long...

He starts off by asking me how I felt toward the end of the week. Truth be told, I don't remember. Its been a week, and I didn't sleep that week... but I remember it wasn't great, and I was up late against my will, red face, stripes, etc. Apparently, my tumor turned off about Thursday. My dex reaction was high normal. My UFCs from Monday through Wed were 150, 180, 190 (take that OLD PCP DOC!) but my IPSS didnt show anything. Except..

long pause

The tech said he wouldn't trust the numbers if they came out normal. He said my left sinus cavity is way to large, and will throw the numbers off, lowering them. And it did. Made them normal.
Long pause

Then he said that the UFCs should be enough to officially diagnose me. His exact words were, "You have The Cushing's" And my world stopped. My journey for a cure only really started this year and already I have a diagnosis. It is elating, but t the same time I feel guilty that so many others fight for years for it. But he wasn't done. He said he needs a bit more proof. My CT of lungs and abdomen look good, and he wants another Dex test, but wants an Octreotide scan to show any tumors. Kind of proving that it isn't anywhere else!
Now the problem is financing. Our savings is blown, tax return gone. I will get a bit of cash when we go to the convention in early June from our hotel mates, but we might need more. And... Mrs. Zebra cant come that first week. If she did, she would miss surgery because she would have to go back to work. And the Inn, while less expensive than a hotel, costs us more in rent for two weeks. So we ask for prayers and if you have any donations you would like to give, I will be attaching a paypal button on the blog. Its easy and you can use a credit card or checking account. Anything is appreciated.

So, here we go again....

Posted via email from The weary Zebra: Zebra Snippets

Confirmation! And doubt?

Well, I talked to Dr. Ludlam on Friday and baised on my UFC, he says I have Cushing's YEA!!! He still wants me to come in for the one week workup that is nick named "Camp Cushie" but he says that by failing the Urine Free Cortisol test, it should be realitivly easy to fail one or two more tests.

At Camp Cushie, he has people come in for 5 days and test every day. Not just one test a sdy, but blood, urine, saliva, etc every 4 hours for the first 2 days. The next 2 days I take a pill every 6 hrs to supress the cortisol (I think) and the last day there is some testing. For me, he also wants to do a IPSS test where they stick a tube from a vein on my thigh into my brain to determine what side of the pitutary gland the tumor is on. Its a two hour test total. I am SOOOO excited. The down side? The cost.

The tests at The Sweedish Medical Institute will cost over $30,000! So, because of this, we got ME insurance. The misses is still uninsured. It will be very tight here. for a long time now. And we are PRAYING they dont secrew me out of this before next year with pre-existing BS. But Dr. Ludlam was so impressed with my results that he was talking about me staying for 2 weeks to do the surgery the next week! I will have to see what happens, but things are looking up! It IS all in my head!

So we have started the process of telling friends and family. But, after the discussion with my mother in law, I feel like I must talk about this:

Faking it?

 

Well, it seems that my mother-in-law thinks I am sick so that we ask for money. In her mind, I am not sick and I am really just faking it or that it isnt as bad as we make it out to be, so that they will give us money! I haven't been this insulted since the LAST time she accused me of stupid crap! Like being in a cult and a devil worshiper, or EVIL! (yes, she said I was evil for taking her baby away from her. Issues? Just a little). Anyway, even to people in their right mind, this is a hard disease to explain. They are seemingly unrelated symptoms (chest pain, fat face, fatigue, urinating more, bruising, thin skin, etc) and its RARE so you cant have it. Its too rare for ANYONE to have it, right? It is said that 20% of the population has a brain tumor. That isnt rare, that is UNDER DIAGNOSED! And tonight's stress is brought to us by a woman who SHOWS many of the symptoms and has just undergone weight loss surgery to correct the symptoms! On top of it being hard to explain, my mother-in-law has trouble FOCUSING (symptom) on anything not inside her head or in front of her face! So a phone convo that is more complicated than, "It is snowing" is more than my wife can handle. I have given up talking to the woman about anything important, but like I said, its hard enough with normies. 

My dad really tried to understand and so have the friends I have told. Im scared to tell those at work just yet, but it will have to happen sooner or later. I really should just adopt the attituede of "either try to understand or STFU!" Well, time for der Shower and to ride this cortisol high out... still hard to beleve that a) Im 25 years old and need a cane and b) this might all be over soon... wow...

wow....