Shackled by my Sentence.

I hope you all forgive me for not updating my blog sooner. Nothing has really gotten much better. My testosterone was replaced since last I posted. That has helped some things. But overall no big change. Thats why I havent posted anything. Nothing much to post.

Today was an interesting day. Overall a great day, in my book. And on days like today, Im able to better reflect on my situation. And its worse than I ever imagined. Today, I was in a cortisol high. So today was a different mind set than usual. Let me take you through the day.

I didnt sleep well at all last night.

I was hot, I have pinched nerves everywhere. Both arms are going numb no matter what positon Im in. But when I was able to sleep, I got the most vivid dreams. The only times Ive ever had these kind of dreams is when Im able to sleep durring a cortisol episode. And as usual, it was a nightmare.

In the dream, my mother and brother were both alive again. I was telling them all about our new home in Washington. My sister was there, and she was laughing and having a good time like we were. My dad was there, so happy. Like nothing was wrong. And my brother gets in his car to get something from the store, and he's T-Boned, right in front of me. Of us. My mother is there, sobbing as her baby is taken from her, and passes away in front of me. I loose them all over again. Over the next several hours, I drift between awake and asleep, seeing this over and over.

After one fit, I realise Im running late and it makes me so angry. Trying to keep it under wraps, I fumble through my morning, warning Mrs. Zebra that she is ok, but to watch out for me. She is so sweet. I just want to hold her and thank her, but this train isnt going that direction. All I can do is pull as hard as I can on the brake if I know the train is headed the wrong way, and hope for the best. I dont even remember what was setting me off, but I remember dropping everything I touched. The clumsiness comes with the corisol, and with that comes embarrassment  which turns to anger. To make my morning worse, I remember that I am broke after both of us the night before were too exhausted to cook dinner. We splurged on two Jr hamburgers. And that ate up what little money we had left. So I couldn't take the ferry, but instead had to drive the full hour to work. On my spare.

The enire way to my part time job (yep, only place that will take me, 1hr away), I tried so hard not to beat the cops to the police station. Luckly, traffic was on my side, and only a few people were told where to stick their hand and attitude. By now, Im very worried about the people who I have to make nice with to get donations. What will happen when the part of my brain that tells me to hang up on the crude, rude person on the line stops functioning? At least Im not in ANY pain. Yep. No pain. Thats what a cortisol high will do for you in the short term. Unfortunately  I had forgotten to grab my urine jug and cooler, or call in. I wasted several good urine collection opportunities. But Im collecting now.

Anyway, no rude people. Not one. Not a great day, mind you, but not one rude person. So I didnt blow up like I should have for my case. Doubled edged sword. The easy ride home gave me chances to reflect on my situation. My depression is almost 100% fatigue and stress. Doesn't cure the issue, but reaffirms my theory  And if something doesn't change soon, we will be homeless. Ive been very fortunate so far. But Im scared. If this day were every day, I could work. But Im up at 2:30am, and my mind and body feel good enough to write this. There is always a price. And that price will be any productivity when I crash, and for several days later. Probably tomorrow. But maybe this will last. Im hoping it does.

And of course, I have all this energy, and I cant focus on anything  This may SEEM put together, but I come back and add and take things as I come and go to other things. Thats probably one of the worst parts. That and the misplaced rage. Thats what I hate about this disease. Plans? I cant make plans. If I dont push myself to my breaking point, I cant do anything. I cant work. I cant go to school. And Im terrified every day of talking to people. I havent talked to some people in months. Im AFRAID to. Why? Lots of reasons. Only some rational. IDK. I just wish I could get someone to listen. I even wrote Jay Inslee, the WA governor. Not even a big EFF YOU.

Its pouring outside. Sounds so nice.

I just wish I could escape. Not just for me, but for everyone around me. I hate being so goddamn useless. And thats what I am. Useless. Im a wage slave, and because of it I cant do anything I can ACTUALLY do. In an ideal situation, I can work when I can, form home. But thats ideal. Not reality. And the longer I stay underemployed, the further I fall behind.

No wonder my family wont speak to me. Im useless.

The doctors dont care. They have all but said those words. So if I can get a few good UFCs, maybe I can get teh warden to raise an eyebrow. Because the system doesn't care that Im a prisoner of my own body. I got a day furrow, and Im tempted to keep going. To supplement this with my steroid pills. Its so hard being an addict to something your body makes too much of, especially when there is no on/off switch. For one day, I got to see what a semi-normal life might feel like. It wasn't my first taste, but it was just as sweet. Everyday, I loose hope of that every again.

Did anyone see the warden?

The Wired Weary Zebra

Lost

As I am writing this, my brother is being memorialized back in Texas. On November 12th, 2012 he was in a horrible accident and is no longer with us. Luckily  no one else was hurt in the accident. But he left a huge hole in the hearts of his friends and family. Thanks to this wretched disease, I cant afford to fly back and be there like I should be. Ive been having to stop my steroid taper not only because of the stress of his loss, but of the constant attacks from family that, until Monday, wanted little to do with me. If you have read my blog before, or even know about Cushing's, you know that people dont understand this disease from the outside. And instead of trying to understand, or just being understanding, most people turn to neglect or even hate, to deal with you. Well, thats happening right now.

My brother and I were always closer than we were to our sister. Its not her fault, really. Just circumstance. But after she married and had children, I really tried to get to know her. Even if it were just as friends, I wanted to be part of her life. I wanted my nieces and nephews to have cousins to look after and big Christmas gatherings. But the last 10 years has been hard on everyone. Im chronically ill, our mother died of complications of what I believe was Cushing's, my brother was uprooted and moved out to the country because of financial reasons, and my sister has had to re-establish herself so many times that I wonder if she will ever find a place in her life where she can just let her guard down.

After our mom died, she really came and joined the family again. I know its hard. She only had three families to try to see: ours, her husbands, and her ex's. But at some point my sister decided she no longer wanted to return phone calls or voice mail from anyone from our side. I didnt want to push it, but after months of phone calls from me, my brother, my dad, and even my wife, we all just gave up. She claims it was a technical issue, but I dont know any handset issues that effect the kids cell's too. I still think its something to do with me, but she doesn't want to hear it from anyone so she just cut everyone out.

Thanks to this disease, I cant afford to fly back to Texas to pay my respects to my little brother who died at 23 years old. Thanks to this disease, I have lost the only mother Ive ever known. And thanks to this disease, I have lost my sister. She decided that, instead of talking to me and having a family, she would rather not deal with me. Even in the wake of our brother's terrible accident, she wont call. She writes to me via Facebook, but I wont read her words anymore. They hurt too badly. She knows we tried to call, but still wont call and talk to her brother, who may never recover from this disease.

So I sit here, absolutely lost. I dont know what to do. I want to talk to my sister again, but cant until she wants to. I dont know how to handle this. By all rights, it should have been me. He had his whole life ahead of him, while Ive been sick my whole life. If I had died, no one would have been surprised. It wouldn't hurt this bad. I wish I could fix all this. I wish I could fix our family and have everyone come out to our enchanted forest and have a good time. But how do I get from here to there? I dont know. I mean, Im working on my phone anxiety. This disease isolates you. Some days its all I can do just to be social online, let alone in person. I just wish I could get my sister to understand this. Or anyone really.

I escaped death 3 weeks ago when I went through surgery. But I should have died. My dad escaped death when he survived his motorcycle crash and surgery. So much death. I wish I knew what to do. I just want us to be family again. I love my sister, despite all faults. And I choose my family, and I choose her. Just like my father decided he didn't want me, but my dad did. I just dont know what to do.

Im so lost.