You dont get it.

Things arent going so well for us. But something a friend left on my VM irked me enough to write. Note: None of what I am about to say has been embellished.

Someone who is perfectly healthy, and owns their own home, told me how lucky I was to have a job (they are unemployed and piddled around until their UI ran out, spent loads on beer and women). Im facing eviction, Im so sick that the 3hr daily commute is literately killing me. I spend about 1/4 of what I DO make on transportation to/from work. And the worst part is HE KNOWS THIS!

I understand depression, I live it every day. Its a struggle physically and mentally to get out of bed each day. So when someone that is COMPLETELY PHYSICALLY HEALTHY tells me that I am "so lucky", its not just that they don't GET IT, they don't care too. I would trade situations with them in a hear beat. Trade being chronically ill with a disease said to be so rare, it doesn't exist, a non-functioning pituitary gland, and the fatigue of a 90 year old man, the bills piling up, the constant fear of homelessness, with that of a fairly healthy, unemployed home owner.I love the guy like family, but c'mon!

Mrs. Zebra's UI ran out and she hasn't been able to find work. Ive been busy either working or doing work at home for people to get my name out there. When I can make my own schedule, I can do some work. But that is hard to tell an employer. We've had some help from good friends, who I like to refer to as "adopted family".

Christmas was rough. I miss my brother, and I think my blood relatives are mad at me. Mrs. Zebra and I had a very quite Christmas yesterday. Just tried not to think about the fact that our first Christmas in our new home might be our last. I have a little work in the pipeline, but it could take until March to pay out. I hate asking for help, from anyone, but we desperately need it. If you can help, it would be much appreciated. If you use paypal, you can click the link on the top, left of this page. Otherwise, if you want to help, send me a message.

The very scared and humble weary zebra.

Falling Apart

Its Halloween today. My favoriate holiday. But, as with all my favoriate things, I can no longer enjoy them. I have been so sick the last few months, I havent had the energy to put up any of the decorations we have. Money has been so tight, that we cant afford to buy candy for the kids who didn't stop by. IN fact, beans and rice it is for our one meal today.

Im so depressed, it is getting harder and harder to get up in the morning. Not wake up, but to get out of bed. I just got out of sinus surgery on Monday. Turns out I had a fungal infection from the pituitary surgery 2 years ago. If we were still in Texas, I wouldn't have had the surgery. You have to be homeless to qualify for aid down there, and if you are homeless, you dont really count. Im still fighting disability, but they are relentless. Even DSHS (Dept of Social and Health Services) wants documents that either dont exist, or they have in their position already. But that is the deal. They grind you down. But today is the last day of my Charity Care at Swedish Medical Center. Maybe I will be able to get it again, but they said its not likely. They dont help indigent people or something.

Mrs. Zebra is cracking through the stress and depression. Im afraid she might leave me soon if something doesn't change. I guess I dont blame her. I am pretty worthless at this point. There used to be a significant section of my day devoted on figuring out what I could do for her next. Now, I cant do anything for her. I cant do anything to help our situation. Im helpless and hopeless. And alone.

The Very Weary and Depressed Zebra

Long time, no see...

Hey all. How have you been?

Im sorry its been so long. A lot has happened since I last posted. Mrs. Zebra lost her job, and to be closer to my doc in Seattle, we scrimped and scraped and barely made it up here. Just in time for the huge budget cuts to happen to social services. So we are in line to fill out paperwork to get in line to see a doctor. Mrs. Zebra is really sick, but we arent 100% sure what with. Her skin is thinning and her hands and feet are always in pain. I thought that I could go back to work and for the last month I have been commuting 2hrs one way to get to a part time job that makes just over minium wage. So after this month, we will probably be evicted. But maybe someone can help us out. Check out the video below and see if you can help.

The very weary zebra.

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

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Fireworks

For the first time in my life, I had the opportunity to sit outside and watch the firework on Independence Day WITHOUT SWEATING!. Unfortunately, I was too pooped to make it down to the park. And it was raining off and on. So this is as close as I got. And I misjudged the distance of the fireworks when I snapped this picture because I thought this was a big as they were going to get. NOPE! But it was bitter sweet.
I got in to Seattle about 7:30 pm and missed the cafeteria here being open. So I had to either eat ramen or order out.

I ordered out. But NOTHING is open on the 4th around here except Pizza Hut. Oh well. So I ordered and decided, since it be about 2 hrs (yea, THAT busy) I would go try to find the fireworks. A nurse was opening up the 6th floor facing that way and we had about 3 couples join us. It was cool, all the sickos huddled around the window watching fireworks. The pasta got here early so I had to bolt, but it was still neat. I just really missed Mrs. Zebra. She is still in Texas, worried sick about me. I wish I could have shared it with her. It may be something we will do next year.

I couldn't sleep. Both lonely, and hot, It was hard to sleep. And teh battle between jet lag and cortisol was waged, and this time cortisol won. I didn't sleep until 2am local time (4am central) and I was up at 6:20am local time. But its nice outside. About 54°, and they are already warning of the heat wave this weekend: 84°! HA! Home away from home!

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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