My life is falling apart

I saw my wife last night.


She was sitting right next to me.

She looked so worried.

I was having an asthma attack, and I leaned into where she normally sits, and when her soft and warm body didn't stop me, I jumped back and she was there, so worried. Then she was gone. Just like that. I want to kill myself. I have no purpose without her. She is what drove me to get better. She's who made sure I could support us. Without her, my life has little meaning. I miss her more than words can describe. She used to tell me "Look, you are stuck with me. Im not going anywhere." usually after a nightmare of her leaving. Now, she is gone.
The therapist said it was most likely a reaction of the trazadone I had just taken, and cortisol on a stressed out mind. Id like to think maybe, just maybe, she was dreaming of me. Probably not.

Ill forgive her
Its ok
I understand
I just need you
Without you, breathing is a chore
Without you, there is no point in getting out of bed
I don't want to eat
or bathe
or anything
To be rejected by the one person who loves you more than anything
The one person who said that no matter what, no matter how sick we were, that they would be there
And for unconfirmed reasons, she's just gone.
I have the phone tied to me at all times, just waiting for a phone call that never comes
Waiting for an email that never arrives
A text message 3 weeks late in arriving
And any day, both our phones will be turned off
And that will be the end, Im sure

To boot, I walked in the door, and Dr. Phil was on, because I leave the sound on the TV for when I wake up, and come home, and he was talking to someone about their PTSD and taking it out on his wife. And I lost it.
I didnt mean for any of this to happen
I was seeking help
So was she.
Why not let us go to counseling?
Why not talk to me?

And then Allsup decided to drop me for disability.
Ill have to become homeless to get any help.
Guess thats the next step.

She was here, and then gone
Maybe next time, we can talk
Maybe next time, she will stay
Dr says that wouldn't be good, for her to appear and talk to me
I don't think I would be too upset.

Really? I mean REALLY?

I dont get it.

I have enough on my plate to warrant the average person to wish to commit suicide. I do. Not the average person in any particular social or economic spectrum, just in general. Lets see, just a short list: I live with a brain tumor that causes me to go for days without sleeping, bouts of rage and fatigue, hormone deficiencies, nutrient deficiencies, constant pain, I cant work and because of it I face homelessness for my wife and I, I have little access to medical facilities, the only way we get food is threatened to be cut with the politics in D.C., what little I DO for money actually aggravates the disease, I spend 1/5 of my income just getting to and from the only job I can find, my living family has all but abandoned me, my wife's family all hates me, most of my friends are also sick and most are online, my wife is sick and out of work and I cant provide for her, and my life span is pretty much set in stone for me. I think I covered everything, but Im sure there is more.

The point is, there is A LOT I can point to and say "That's why I DESERVE to end it. I want the pain to end!" But so far, I have failed in that, thanks to many of you meddling people reading this. What KILLS me, no pun intended, is when people have WAY LESS to deal with, and are just having a rough day or week. Or maybe they had a fight with their significant other and are picking up the pieces. You see, Ive had that. And I had ALL OF THE ABOVE to deal with at the same time.

I know everyone's struggle is different, and maybe that rough patch IS the hardest part of their life to date. I don't know. What I do know, is that Ive had to deal with it, AND all of the above. And if I haven't, at least you dont have ALL OF THE ABOVE to deal with too. Quit bitching. Yes, its hard. Yes, its easier to give up. Yet, I do not. I find a reason to get up out of bed each day, even when it literally is the hardest part of my day. Even when I literally have to be carried out of bed, I make it. When when I have to be spoon fed, and its happened, or have had to be changed out of sheets I have urinated in, I push. And it pisses me off, again no pun intended, to see people who could carry half of MY burden and still be ok, bitch and moan and tell me they contemplate suicide. I understand depression, as it is a daily struggle with me and my wife, and most people I know. And it clouds the mind. I have to keep reminding myself that while I deserve for the pain to end, those around me dont deserve to hurt on my account. And the only thing worse to me than my life is hurting those I care about.

If you know me, you probably struggle. But any time you feel like you want end your life, read this. Or call me. Or text me. Ask me how my day was. Tell me you really want to know. If I cant make you feel better, at least I can make you thankful you arent in my shoes. And there are people who struggle just like me, sometimes even worse than me. This letter isnt for you. You know what Im talking about.

And Im not comparing who is suffering more. Im just tired of people telling me how they are going to kill themselves, how their life is so bad, and about so little, especially when you know people like me. Venting is one thing, but I feel like when people tell me this that they are again judging me and people like me. I dont kill myself, so they dont have much to stand on.

The Weary and very Annoyed Zebra

And thanks for letting me rant. Things have been rough, and we are in danger of getting evicted again. We have some irons in the fire, but nothing is for certain  If you could help us get through the next few months, we would really appreciate it. We are trying to raise $3000, which is 3 months rent. Thanks to all who have donated, and I ask only that you share the page with people you know, and we appreciate any donations.

Click here to Donate to our Rent fund.

In gratitude,
A Humble Zebra

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

Hallucinations

I've talked to a few people about this and may have even touched on this before. From the people I have talked to, and the research I have done, the weird things I have seen all my life a most likely due to my high levels of cortisol. I remember growing up, and at night I would have these vivid nightmares. I still do. Thing was, and is, that I wasn't sleeping when some occurred. I remember being in 4th grade and sitting in the living room at 2am, because it was the coolest room in the house, rocking because I was having a cortisol attack, and I wasn't alone. There were people in the room behind and to my sides. Just starring at me. So I starred at the TV, watching Cartoon Network's old reruns, until my chest stopped hurting and I got sleepy again, usually around 4am.
I still have them now.
The last 5 years, we have had a black cat live with us. He has piercing eyes that shine at night. HE doesn't like to come near me. Usually stays a few feet away. Doesn't eat much. And has followed me to work a few times. When he followed me to work, it was concrete to me that the was not real. He would walk by the door to my office, and repeat the same pass over and over without regard to anyone there.
Last week, when Mrs. Zebra and I went to bed, the room changed paint, and all the furniture was rearranged all of a sudden. Nothing made sense. It scared me. Or my wife's shirt will change colors from when I look at her one minute to the next.
22 days and this bugger gets cut out!

The Weary Zebra

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Pick Your Poison

A 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.

Sometimes I will get my expresso feeling around 3-4pm (1500-1600), but usually happens around 8pm (2000). I feel so much better! I have all this energy! My aches and pains start to fade away! So time to do something constructive, right? Not a chance. I cant focus. I had too much "coffee". Now all I can do is shake and rock and try to tire myself out because I need to go to sleep soon! Then my chest starts to hurt, and every vein in my body feels like its going to burst. And my head starts to hurt. Then, as it gets closer to midnight, I get a dose of BOTH Nyquill and expresso. So now I feel so tired but CAN'T sleep! And I feel like Im going to explode!
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

See and download the full gallery on posterous

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SHUT UP AND LISTEN!

Ok, before I start this rant, I want to thank the DFW Smart Car Club for their generosity. My friends in the club showed how much they appreciate what I do for the club and gave a substantial donation to help Mrs. Zebra and I up to Seattle. Thank you all!

But something else has really started to bother me and I had only really heard of this. I had never experienced it, at least in my face before. I had a co-worker ask me, and later my boss did too, why I need so much time off after surgery. "Its not like its cancer or anything." WTH? (I mean I know they just dont understand, and they are really awesome people but I need to blow off some steam so just bear with me). Then my aunt tells me that Cushing's doesn't have the "torture and death" that cancer has. EXCUSE ME? Oh, so Im not SICK ENOUGH for anyone, am I?
Look, I don't want to down play down cancer. It can be a very horrible condition. But I know more people that have had cancer and have told me "you know, they caught it early and treated it, and Im fine. Kemo was bad, but now its like it never happened." I have YET to meet or talk to ANYONE with Cushing's that said ANYTHING like that! First is the fact that there is a SIGNIFICANT number of people who have Cushing's and don't know it. MY MOTHER WAS ONE, at least as far as I can tell. We will never know for sure. I say WAS because one of the symptoms of untreated Cushing's is an early heart attack and early death! Aside from that, Cushing's is hard enough to get diagnosed. Some people wait years, or die waiting because the treatment for their weight gain, diabetes, high blood pressure, constant agonizing pain all over, insomnia, depression, constant diarrhea, mood swings, hair loss, hirsutism, blindness, nasal issues, ADD/HD, infections, thin skin, constant feeling of heat or cold, body wide acne, cysts, bone and joint problems, thats all I can think of off the top of my head. THATS NOT BAD ENOUGH FOR YOU PEOPLE? THATS NOT SICK ENOUGH? AND Cushing's can LEAD to cancer!
THEN, there is the treatments! Its not as simple as cancer in many cases. Best case scenario, you get your pituitary tumor taken out and try to ween yourself off the overdose of cortisol your body is used to. I've had tastes of this time and I want to die. No, not "Im emo, and I want to die", no I mean "Please kill me so the pain goes away." But thats not sick enough.
So, that surgery fails. You can go back in, or they can try radiation. I have a good friend that tried that. So much, her pituitary is shot and has the texture of an eraser because of it. In that case, you get the lovely decision of living the way you are, or trading your disease for Addison's by having your adrenals taken out! Ok, so you choose that and take meds the rest of your life... Except that THIS procedure might make you grow tumors all over your brain that they cannot operate on. Thats called Nelson's disease. And this is SOOOO much better than Cancer! SURE!

Look, just because YOU don't understand what I am going through, doesn't give you the RIGHT to tell ME Im not sick enough. You have NOT FREAKING IDEA WHAT I HAVE BEEN GOING THROUGH FOR 18 YEARS! Either ask me questions and talk to people who have this for STFU!!!!

"My invisible disease is MORE REAL than YOUR medical degree!" SO STEP OFF!!!

If you Cushies have anything to add, comment so the ignorant people who read this can get a better idea of what we go through.

The Weary AND ANGRY Zebra

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Is Blood Thicker Than Water?

The newest and one of the worst possible symptoms of Cushing's disease: Relationships suffer.

I am very blessed to have a wonderful, understanding wife. I dont know if she would understand what I am going through if SHE were not going through it too. I need to get her on to talk about her struggles. Anyway, this month is the one year anniversary of my mother passing away. Shortly after, in July, we found out that I probably had Cushing's. Since then, family has been growing ever distant. Some even expressed they wanted me to die and stop making Mrs. Zebra suffer (paraphrasing). It has been a rough year, but you would think that a tragedy such as my mother passing would bring the family closer together. In fact, I don't think anything has changed, if it hasn't gotten worse.
My brother, whom can be the coolest guy ever, seems to ignore that I am sick. I dont know if it for his own mental health (very likely) but a little acknowledgment would be nice. He DID invite me to a local concert which was great but I had to work and I don't think I would have had the energy. Its not saying much, but we are actually closer to each other now than growing up, but he is 5 years younger than me and we never got along that well. He was the spoiled brat and I had to work twice as hard for every bit of attention I got. He is still spoiled, but he is enjoying being single, and no bills. Be he is so wrapped up in his own life, he just glazes over me or anything I say.
My dad is the kindest person I think I have ever known. He is really my step father, but I only know that as a title. He married my mother in April of 1989, 5 months before my brother was born, and took me in as his own. We had struggles with my mother got sick 10 years ago, and he made some mistakes. But after my mother died, and seeing the personal hell he went through, I forgave him. But now that he is alone (his girl friend left, now the loneliness hurts again-been there, done that) he has withdrawn. He doesn't know what to do about me and he live far enough away that its hard to get out there. I know he cares, but he seems helpless and withdrawn. And he cant fix it like he fixes my car! So that suffers. NOTE: He is not blood related, very important

My sister.... To start, my sister did not live with us. She lived with her father, my mother's second or third husband, in Kansas while she was in Tulsa, OK. It wasn't until we all moved to Texas that I even remember meeting her, and barely. She was always around, but never too involved. One summer, she came to stay with us and found out how good she had it back home. She always resented our mother for making sure she would be taken care of. I think she saw me as an extension of my mother and resentment was transferred. She promised for years she would come hand out with my brother and I, but she was 16 and I never held it against her. Others did, but when I was that age, and a but older, I knew better than to promise those things. I learned why she was so busy! When she had her kids, they were hardly ever allowed over to visit us. But she was always there in the background. She even helped with our wedding. Helped isn't the right word. She MADE SURE the church was well decorated and stayed late that night, and after the wedding the next day to clean it up as her gift to us. I will always remember that. But she got really distant after that. Im not sure what happened. We go over and visit, and after about an hour, the air would get thick and we felt uncomfortable. Then my mother got sick, her and my sister fought for nearly 5 years and I finally got her to visit our mother. My sister took over when our mother passed. I didn't even have a chance to panic.
I really thought that this would be what brings the family close. She shut herself off from everyone. When I got out of the ER in July, we went over to try to catch the tail end of the July BBQ, but it was too late. So we told her then what we had found out. At christmas time, we told her about the information we had gathered. In February, we told her about the tests I was doing in Dallas, and the doc in Seattle. I emailed and messaged her, and when I got the courage to call, it would always go to voice mail. Now a days, I really feel shy on the phone.
All this time, no calls. No emails, no social network posts. She reads my posts, she told me so. But nothing. Even when we told her we were in Seattle, she said she didnt know. And that was that. It bugged me enough that I messaged her as to why this was going on. I have a brain tumor, but it is nothing as bad as leaving her husband and kids or "possible" cancer (which we talked about and prayed over wit her) or her hysterectomy (we visited her in the Hospital for that one too). And she starts this pissing war about how bad her life is living on her own for the first time and how I need to feel bad for her! I just want acknowledgment! I want her to be my sister! And today, she tells Mrs. Zebra that she never wants to talk to me again (3rd time in so many years).
My uncle refuses to talk to me, and my aunt is kind enough to drop a line every once in a while. She's got her own medical case to deal with.

So my own flesh and blood, sans my aunt, has seen fit to practically, and literally, disown me. Because of this damn tumor in my head. 18 years of dealing with it, and all of a sudden relationships die. This isn't even including all the friends I have lost. But friends come and go.
My inlaws, while they used to want me to forget about this disease and kick it, are coming around. My father in law is offering to help me around the house while in remission.
But my own flesh and blood disowns me.
My step father and in laws step up how they can but even they only can do so much. I haven't felt this betrayed since my mother kicked me out of the house 7 days before I left for boot camp. Even then, people not related to me took me in.
Sorry this one was a novel. I just needed to get it off my chest. Hell of a way to start my week.

Back to work...

The Weary Zebra
WRITER'S NOTE:
Ok, so no one is reading the posterous blog I post this to first for connivence, so Im throwing away the Zebra Snippet thing. For those of you who don't know, I use posterous.com to post my blogs when Im not able to really get to blogger easily. I can just email the blog post, after composing it for as long as I need to, then come back to blogger to add my tags. Sorry, not relevant to the update, but it popped in my head that I needed to clarify that.

Also, Yes, I have insurance now, but not having insurance for such a long period of time, and not having it when I started this blog, gave me the idea to not only show how hard it can be to live with this disease, but to do it with out access to proper medical care here in the states, and what it would cost to do it cash and carry. My wife does not have insurance, and she will start testing soon for Cushing's.
Thanks Beth!

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Purple Rage

...You Wouldn't Like When I'm Angry."

 Well, I dropped off my 24hr UFC this morning, asured that both tests would be done: Cortisol and 17OHC. I was praying all day while trying to stay awake that the numbers would come in high and I would get a diagnosis. I didn't think they would be in so soon...

I got and email that they were in so I logged into the hospital's site and low and behold there it was. I read over the numbers at about 6pm and quickly posted them online for other Cushie's to desypher. About 7pm, someone comments that it is missing a crutial hormone: Cortisol. The make-it or break-it cause of my own personal hell. So I quickly logged back in on my phone while going to the movie ticket counter and I had missed that the test was for THE WRONG HORMONE! I quikly shot the endocrenologist an email and went into the theater to enjoy the flik.

Two hours later, I am ticked.

My pulse is high, I am agatated. I didnt enjoy the last 30 min of the movie and dont feel like myself. I usually annalize the heck out of most films, but had forgotten all about it with this change of emotions. I went into the restroom and quickly appoligized for my comments online about how the doctor Freaking cheated me. But thats how I felt. I felt so cheated. I quickly walked out of the restroom and I wanted to throttle the next person I came to, I was so ticked! And I had vissions of kicking the crap out of several people around me and.....I stopped. I thought, this isnt right. So I went back into the restroom and since no one was in there, I lifted my shirt...

Purple

Purple dots

Purple Stripes

PURPLE RAGE!

The color of my dots and marks told me everything I needed to know. And I looked at my phone and saw it was after 9pm. Im getting high. High on cortisol. The hormone that @#$%^&*! doctor didn't order a test for! WTH!? Ooohhh, he should be SO #$%^&* glad he wasn't there....

Needless to say, it was an intesting drive to Chili's after that. Tunnel vission down the freeway. I was aggated, focused but oblivious to anything else. My frustration at why I was frustrated (cortisol) and how stupid it was, made me MORE frustrated! I felt like I was an aderline junkie (technically I am, causes the pains apperently, when I dont have it) and I was getting my fix! But, not in a good way. I want to sleep, but cant. So, purple rage continues. Thankfully, my doting wife understands and knows Im not mad at her. Im just mad. And agated. And its not my fault. Or the doctor's fault WHO DIDN'T ORDER THE F$%^&* TESTS I ASKED FOR! No, its the cortisol. So I "rest" in solice knowing what the heck is wrong with me.

At least, one thing.... can't fix crazy...