Camp Cushie Day Three and Four

Here are the video updates for Day three and four. Hopefully now, you know how rough this week is. I dont even have a Day Two video anymore. Im still looking for it...I lost a day of updates...

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Camp Cushie: Day Two

For some reason, I cant find the video I did for Day Two. I will look for it again, but I remember doing it... Does anyone remember watching it...? The travel lag and the Cushing's is not playing with my head well... So instead, here are some pics of our "accommodations". Dont except much!

http://gallery.me.com/iveybrandon#100273

The Weary Zebra

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Camp Cushie: Day One

Day 1: Rough Shot over the Bow
I am still working on the VLOG, and it will have better info than I do now. Day one was rough. Whatever you do, if you come, go shopping in a TAXI! Dont take the bus for groceries! Lugging $70 WORTH OF $40 grocery all over downtown was not fun. Especially with a picc line in your arm. Im doing blood work every 4 hrs, and I met with Dr. L yesterday. He is SOOOO cool! His staff is great and the staff at Cherry Hill is the best! They are so friendly and funny. Im sleepy now, but I did a 15min vlog at midnight that is much better and has more info.

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Swedish Medical Center Prolouge

Well, today was amazing, though we are exhausted. We had two hours of sleep before our flight left this morning for Seattle, WA to see Dr. Ludlum at the Swedish Hospital. It was my first commercial flight and the first time I had ever been further west than Denver. The view was amazing and I will have a really cool vid about the flight later.
We took a nap after we checked in at the Inn at the hospital. I will post a pic of the room later, but if you are coming, do not expect much. It is a converted patient floor. We spent the afternoon at Seattle Center. We hope to do more over the course of the week but the schedule is very tough. One day this week, I cant eat most of the day. I will keep you all informed. Tip #1: If you decide to come, try to be back before 9pm. If you get back later than that, you will be locked out and will have to go in the ER entrance. Night folks! Oh, if you want pics from today, copy and pate this into your browser and enjoy!
http://gallery.me.com/iveybrandon/100242
The Weary Zebra.

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Zebra Snippet 10: Sleep

Sleep. The night time rest that mocks me. That mocks most Cushing's sufferers. For the first time in so many months I can not count, I got 8 straight hours of sleep. Heck, This is the first time in so many months that I got more than 2 straight hours. And I feel like I didnt sleep at all.
From my experience and what others tell me, Cushing's Patients have a love/hate relationship with it: We love it, it hates us. Some people, like myself, have two options when it comes to sleep usually. We can try to sleep and end up tossing and truing, dozing in and out, heart beating out of our chests, not resting. Or we can stay up, wait the cortisol out and hopefully get a few hours of light sleep before we have to go back to work again. As I write this, I can barely keep my eyes open. I feel like a train hit me and wondered what happened in the 8hrs I spend unconscious. It feels like I spent the entire night drinking vodka and tequila. And no, I didn't. Just saying this must be how it feels to do so.
5 more days until I step foot in the Land Of Port, to see Dr. Ludlum.

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Zebra Snippet #9: Cushing's Awareness Day

Yesterday was Cushing's Awareness Day. Never heard of it? Not surprising. Its not covered in the corporate media and as Cushing's is relatively unknown, so is its awareness day. Kind of ironic, right? As we find more and more about this disease, doctors are discovering that it is much more common than once thought. 1/5 the population, 20%, are said to have a pituitary tumor. That cant be normal. But the doctors of this country who are not researchers are going by what they were taught in school: It cant be a platypus because they are to rare! If you are reading this and you think you have ANY of the symptoms of Cushing's, please see a couple of doctors. And pass along our cause to others. The more we talk about this, the more we all will know. And knowing is half the battle.

(...G.I.Joe!)

The Weary Zebra

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Zebra Snippet #8: A Good Day

Saturday, I felt like junk. I was having GI issues all week. I couldn't eat because I was not digesting anything. But the cortisol made me hungry. Saturday, our small apartment was flooded with sewer backup. Our entire building was affected. I couldn't sit still during the film we went to. And I felt like a slug all day.
Sunday.... Sunday was wonderful. I didn't need a cane, I had an appetite to eat! I had enough energy to clean our apartment getting ready for our trip on the 18th. I paid for it Monday morning, but by Monday afternoon was ok too, I even replaced R2D2's headlights. Good thing I felt good too, because my wife has a stomach bug. So this morning, I decided to brand my droid. I added one last decal to the window. Its in the upper right hand corner. When they happen, days like Sunday and yesterday afternoon are Godsends. I cant thank God enough for them. The fallout can be bad, but I get so much done its worth it.

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets