Alone and Sick
Posted by The Weary Zebra at 8:06 PM 0 commentsShackled by my Sentence.
Posted by The Weary Zebra at 3:03 AM 1 commentsI 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
Communication Disconnect
Posted by The Weary Zebra at 9:34 AM 0 commentsPick Your Poison
Posted by The Weary Zebra at 11:27 AM 0 commentsA good friend that reads this blog was talking to be about how Cushing's effects our sleeping patterns. And she said that "it feels like I am getting shots of Nyquill and expresso at the most inappropriate times," I thought that was one of the most brilliant explanations I have ever heard! The only thing was that I would have said energy drink instead of coffee because I hate coffee and dont know what it really does to the body, but tomato, tomaato.
Let me explain a typical Cushie day for me, in the light of energy levels. I have to get up earlier than most people would, because it takes me longer to get up and dressed. Truth be told, it would be MUCH earlier than that if I didnt have help. It is embarrassing to say, but Mrs. Zebra helps me every morning by picking out my clothes from the closet and drawers, putting together my shorts with belt and such, and helping me up so I can put them on. She also feeds the bunny and cat and fixes breakfast all because I feel like I just took a shot of Nyquil. At least a shot. And I usually feel like this all day, with aches and pains, and the crushing tiredness like I want to fall asleep. Even while driving. In fact, imagine driving a bus full of kids feeling like this. I did, for 4 years and a full time student. HELL.
So around 2am, sometimes as late as 4am, I finally fall asleep. Sometimes earlier if the sleeping pill works. Then I have to get up about 6am. Sometimes earlier. And I toss and turn all night, sweating and I wake up sore and tired again.
This morning was nice because that happened last night, but today is my first day off in months! I dont have any cash to shop with, no where to go and nothing to do. I got to sleep in a bit, and am about to take a nap.
I think Im dressed for the occasion!
The Weary Zebra
Zebra Snippet 6: Alone
Posted by The Weary Zebra at 2:25 PM 4 commentsI 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.
Day For Night
Posted by The Weary Zebra at 2:18 AM 1 commentsDo you see what time I am posting this? Yes, I am up that late. My heart is pounding, my chest hurts and I am WIDE AWAKE! The last week, I probably have slept less than 10 hrs. I cycle really hard, and seem to do it randomly, although I am just starting to figure all this out. When I THOUGHT I had figured this out, I was awake at night, starting about 8pm, until 2am or so, and tired all day. This week? It was like my adernals said, "HOLD UP! Lets throw him for a loop!" This week, I have been at least fairly wired durring the day (and except for the brain fog and innatentiveness, it was mostly great. One day was really painful, but ok otherwise), then would go into a lull around 6pm until close to 9pm. Then the high started until 2am! Couldnt sleep well from 2am-6am then it was time to get up. I probably got up every hour each night.
Then today, I got to sleep in (well, I mean Saturday)!
I was able to fall asleep around 3am, and slept preaty badly until 5:30am. Then it was nightmares (not usual for me to dream) until I woke in a panic at 9:45! My chest already hurt, pulse was high, and I was already angry. I was ticked off all teh way until 1:30pm, when my low started. I had to run errands till 3:00 pm, at which point, I passed out for a few hours.
Now Im up again. I *LOVE* not sleeping! At least I had something construtive to do earliler. And the rest of my time has been spent wondering why my ice machine hates me! I cant function in this world like this anymore! I need to get a diagnosis soon.
Speaking of: I got my first UFC back early Friday morning (yep, was up when I got the email at 3am). It shows I have Cushing's. I emailed the endocrinologist I saw, since I dont have his number, and have not heard from him yet. And I called the Swedish institute and am waiting on a call from them and a couple of studys. Not if we can my wife on the same road to a DX! Getting sleepy finally so G-Night!
Zebra Snippet 3: Brain Fog
Posted by The Weary Zebra at 10:45 AM 0 commentsI can barely think today. I cant remember what was going on 10 min ago, and I need to. My ADHD meds are not helping today at all. I need to sleep. I cant think straight, It's hard to put together sentences for this post. I was very high on cortisol last night, and I think today, I am paying for it. Really hard to think, and I don't wanna. Well, I do, but its really hard. I can't brain today, I have teh dumb.
The Weary Zebra

