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

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Zebra Snippet 6: Alone

I think its #6 anyway. Im not looking right now. Probably have 10 #6s up there right now. It shows how stupid I can be. This is what I wanted to talk about. The depression. I think I mentioned it in an earlier one, and if so don't bother reading this one. A reader told me on twitter that I have inspired her to blog. Well, Im glad it helped someone. I try. Sometimes I dont think I make any sense, or make any difference. I feel so alone sometimes. Like right now. My cortisol is high, I know that, but my hormones are crazy and I feel so down. Like I am alone in the world. Like the people online are so far removed, and my family doesnt understand or is avoiding me because of my illness. I just want to die when I get this feeling. And the only thing that gets me through the day is the knowledge that its hormonal. Its hard to remember with any kind of rational thought that all the feelings are wrong. That people do care about you. That your skin will stop crawling, that the cat that you see isn't really there, that the nightmares will one day stop. Its hard.
This is to anyone that finds my blogs helpful in any way: Make a comment if you can. A little feedback goes a long way. 21 days until I go to Dr. Ludlum's Cushie Camp. I just want the elephant off my chest and to feel human again.

The Weary Zebra

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Cushings and Hair Loss

Just thought I would share what Cushing's can do to your hair. No, not make it blue, but the blue dye shows how blotchy the hair loss is. It isnt typical male pattern baldness. That, and the fact that this is age 25, and it started when I was 13, shows this isnt typical. You can see more on my photo page.

The Weary Zebra

Wanna know what Cushing's Affects?

Watching the Health Insurance Reform pass, I was reading Moxie Molly's Blog and saw this picture. I think it says it all. There isnt much this disease doesn't affect. It looks like another long night...

Next Stop: Camp Cushie!

Today, I kicked my PCP to the curb! I haven't told him yet, but the last few days have been THE HARDEST dealing with him. He didn't believe in Cushing's until Friday, then all of a sudden knows everything about it. He told me he would not refer me to Dr. Ludlum for a workup unless I went and got a workup from one of HIS endocrinologists. Knowing him, he would have told them to ignore me and send me back. He refused on all accounts. I mean, obviously, Im just a fat and lazy sack of crap!

But I still need a referral. So Dr. Ludlum sugested I find another doctor and try to just get referall. I decided to go to a doc-in a-box (PrimaCare= ER walk in clinic) and not only were they able to do the referal (CareNow wouldnt) but the doctor I saw is so intrested in my condition, she wants me to update her on it when I get back. If she ever gets her own practice, I will pay her a visit!

We are getting flights now for April 18th and the 23rd.  This is finally hapining.... It hasnt fully sunk in yet....

Next stop, Camp Cushie....

The Weary Zebra