The Void and The Sun

"Moon of my Life."

Kahl Drogo

"My Sun and Stars."

―Daenerys Targaryen

What do you do when you sun, moon, and stars disappear from your sky? I am so sorry for not keeping this up. The last year has been very bad for Mr and Mrs Zebra. We have been waiting for my disability to come, and we got another denial letter, this time denial for an appeal. Mrs. Zebra had finally gotten into a therapist to cope with her anxiety, and as of Jan 1, had both health and mental health available. This is why we moved here: so we could both have the help we needed. But she couldn't hold on I guess. 

After planning Thanksgiving dinner with close friends, after holding me and telling me how much she loved me, after tell me I was "her big heater" and "I'll see you when you come home" after all of this, I found our home empty of the warmth and happiness that is my Mrs Zebra. Nothing but a note: "I am leaving you. I will not be back. I am safe." I have not heard from her since 9am on 11/27/13. She is avoiding everyone's calls and voicemails. I hope she really is safe. 

After speaking with our doctor, because we share one, all I could come up with was that she was more depressed than she let on. Maybe it is because she didn't want to bother me, or pull me down. I hope some day I will know. But when they changed her meds, she got so much worse. She must be in so much pain, because I know I am. I just want to hold her and stroke her hair and love on her. Her well being is all I care about. I only want to improve myself so I can be the pillar on which she can lean. I want to be her strength when she is weak. 

What do you do when your sun, moon, and stairs are suddenly gone from your life? The gaping maw of a black hole left when best part of you is ripped away with no explanation, no advance warning, and no immediate recourse? Without my love, my darling, I am a shell of a man, condemned to wander the endless void, looking for my lost soul mate. I know people say that you must be your own person, and I think maybe she lost herself in me, but I lost myself in her, weaving myself in her magical fibers, bathing in the wonderment that was her mind and body. When we touch, when I hear her smooth, silky voice, my world is complete. I can die happy each and every time she whispers in my ear "I love you. I will never leave you." She told me over and over I would never come home to this. But I am, and I am left to hope that she will contact me and someday, we can work this out. 

Almost 10 years of being with the most wonderful person I have ever known. She wasn't perfect, but I had learned and was learning to accept her for what she was, and in that she was perfect. -IS- perfect. The maw is so deep, it so fracturing my crushed soul, it feel as if she is lost for good. But if there is to be any repair of the bridge that connected our two hearts, she cannot come home to a broken man: the broken man who didn't realize he had become dependant on her to prop my illness up. No, not again. I am going to a therapist on Monday. I know he cant give me the answers I need. Only she can. But maybe he can help me find the man she married again, and present that to her again some day. Maybe she will get over her pain and anxiety, or learn how to communicate her feelings to those who want her to be happy. All I know for sure is I love her deeply, deeper than the deepest oceans, and I will not give up on us. I will give her the time she needs, and pray to whatever is out there to tell her I love her and miss her. 

What I know is that my sun, moon, and stars are gone. And the void is here. Deeper and darker than ever before. I want to tell her so bad, the feelings I have inside. To borrow from Staind:

My love, 

You're my world, the shelter from the rain
You're the pills that take away my pain
Youre the light that helps me find my way
You're the words when I have nothing to say

And in this world where nothing else is true
Here I am still tangled up in you
I'm still tangled up in you
Still tangled up in you

You're the fire that warms me when Im cold
You're the hand I have to hold as I grow old
You're the shore when I am lost at sea
You're the only thing that I like about me

And in this world where nothing else is true
Here I am still tangled up in you
I'm still tangled up in you

How long has it been since this storyline began
And I hope it never ends and goes like this forever

In this world where nothing else is true
Here I am still tangled up in you, tangled up in you
Im still tangled up in you
Still tangled up in you

Come back, my love, my wonderful wife. The best wife in the world, no matter how hard I was on you. I am working on that, I have been. I promise that I am fixing it. Cushing's or not, I will find a way to not let those rages affect you again. You saw I was working on it. I was getting better, and will get better. If disability wont help me, I will work what I can. I will provide a living for us. I will not let this sickness devour me anymore. I will do anything just to hold you in my arms. Please, my wonderful sweetheart, please talk to me. 

Without your love as my anchor, there is nothing but the void where our story ends. Please, dont let this end like a hollywood tragedy. Lets make this a sappy love story, where we both work on ourselves and come back and talk. Please?

If you can read this, my love, know I will keep the home fires burning. I will move mountains to be with you again. Whatever you need, as long as we can be together. I mean that. 

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

Emotional Blackmail and Cushing's

For those of you who know me personally, you probably know how hard the last month has been. If not let me give you a recap:

Two good friends of Mrs. Zebra and I broke up and one is living with us while they each figure out life without the other. The person staying with us is also chronically ill. She has fibromyalgia and severe migraines, among other things. We have a small sickie commune going on. Mrs Zebra and I both have been in and out of hospitals lately. I'm testing to confirm that the first surgery was not successful, and the last week, Mrs Zebra has been fighting a MRSA infection in her foot from an infected blister. Mix this with a new schedule with commuting the both of us that work, and it's not been exactly a restful time.

What you probably don't know is the other friend hadn't been taking this breakup kindly. He is also suffering from an illness, but I am not qualified to speak about it. Over the past month, he has been harassing our new housemate and to a lesser degree, both of us Zebras. But it's draining what little energy I have.

At first, I saw it as lashing out at her, and then us, for the break up and perceived "taking of sides". I won't get into details because it's not important. Suffice it to say that it's happening only from his end. But the threats on us keep happening. The calls at all hours, the text messages that say things like "well, you aren't answering right away, so I guess we aren't friends anymore" all hours, I mean the man doesn't get that I have a chronic illness, and have to rest or sleep every chance I get. Today, I realized he doesn't care.

This morning, we all were treated to a stressful morning where he was doing it again. He wasn't even letting me use the restroom or get dressed, which both can take considerable energy and time. And stress makes me worse. It makes me more sick. To have to worry about what kind of text message or phone call it is, makes me sick to my stomach.

You can't treat people this way. That's goes for anyone. You can't emotionally blackmail people into giving you attention and expect keep them around. It just doesn't happen. But to do it to people you know can't handle it, that takes either someone who really needs help, or is so beyond caring for people that it isn't worth the time or energy investment to find out.

And if you are reading this, and any of this rings a bell, here is a message straight to you: understanding goes both ways. I understand you are lonely and hurt, but a) its not my god damn fault, b) its not fair to take it out on sick people, and c) keeping it up isn't helping anybody. You have to understand that I don't have many friends because of this disease. People choose not to understand what's going on with me. They judge me for my lack of energy, my lack of social skills, my lack of money, my lack of anything else that makes them want to be friends. If you feel that you are one of these kinds of people, then I'm sorry but I cannot spend so much time and energy propping up your low self esteem if you wont or cant reciprocate. I just cant. I don't have the energy to properly take care of myself. If I spend energy on you, you have to do the same. You cannot expect to get positive results by emotionally blackmailing people, especially ones that are limping along as it is. And your actions have made us very worried about coming over. I'm not sure what you will do.

Now, if you feel you can properly give and take and handle an adult-like relationship with people, then not only will this work out, but I want to be that friend myself. I understand you are hurting. I understand that feeling, like sinking into a hole of worthlessness. I understand what its like to not have enough energy to wipe yourself in the bathroom, let alone get out of bed to do so. Understanding goes both ways. 

No one really wants to be alone all the time. And no one really has to. But lashing out isnt the answer, and for me, at least, I cant handle it. I'm too sick. And I don't have to. We can still be good friends. We can still work together. But that is really up to you. That's what we want. 

Specifically to our friend, you are a smart guy. One of the smartest I know. But I can only spend so much time trying to convince you to sober up from the funk you are in, and realize that. I'm too sick. And for that, I am sorry. 

The Emotionally Drained Weary 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.

1 year post op: kick me while Im down why dont you?

Im sorry its been a while since my last update. Ive been so down and low in energy, and depressed that I just havent wanted to. That and I really feel like no one cares. 

Since my last update, I lost my insurance, and Mrs. Zebra lost her job thanks to the stalker and a co-worker dogging on her so much she snapped. Both of us are unemployed, both are sick. Im not sure what we are going to do, but we both feel we need to move west. Please, if you can, donate to help us move closer to Dr. Ludlum, by clicking the button in the upper left hand corner.

Last week, I had my 1year post op. I felt like crap all day after my Cortisol Stimulation Test, and couldnt get out of bed the next day.

I got a call from Dr. L's office today and I was kind of frustrated at it. Those of you who know what is going on with me might know why, but in a nutshell I had my pituitary slaughtered to rid myself of the tumor inside. They missed some, my numbers never crashed, and my pituitary never woke up again. In September, and January, same thing. I went to Seattle to do yet another CST, and now they are saying I have enough ACTH and cortisol to be life sustaining, but I still have Cushing's. My frustration comes from this: Later last week, I coudlnt get out of bed. Actually, I felt like crap all day Wednesday (the day of the test) and couldnt get out of bed Thursday morning either. So assuming Im still cyclical, and assuming my pituitary, until last week, was dead or zombified at least, wouldnt it be the TUMOR causing that? And if it is, is it really smart to be weening? How do we know if it is or not?

They want me to ween by 2.5mg a week, which is very slow. But last time I tried weening I ended up in the ER each time. I probably should have been in the ER last Thursday but I hadnt thrown up my stress dose (thanksAdrienne Brandstetter) and thats usually the point in which I go. What do you experts think? I know 20mg/day is high but if it is the tumor doing this, is weening off the steroids really that smart?

The pit is dead still, because Im not making GH or Testosterone either. The tumor is the only thing that could be making ACTH, even according to them. So why ween? If the tumor was "ON" that morning, even at a low enough level to look normal, I dont understand why that means Im ok to ween.

I hope this gets sorted soon, or I dont know what will happen.

Frustrated Weary Zebra

Laid Off

Due to medical, or the economy, or whatever, I was let go today. It was supposed to be my first day back and although I wasnt ready to go back to work physically, I was a little excited to get back in the editor's booth.This is has been such a hard year, I really hope and pray this is the last major obstacle we have to deal with. Im not sure either of us can take much more.
I have some options in both regarding this position, and others. But I am forcing myself to take one thing at a time. It is so hard dealing with this when you are so sick. I dont know how people do it. I really dont.

The Weary (jobless) Zebra

Posted via email from The weary Zebra: Zebra Snippets

Afraid

Today I am 17 Days out from surgery. Im beginning to have some 2nd and even 3rd thoughts about it. This is battling with the rational thought that I NEED this surgery. I just thought I would get some of these out.
Im afraid I might not make it through surgery.

Im afraid my personality might change drastically.

Im afraid they wont get it all, and it will have been for nothing.

Im afraid I will get a Cerebrospinal Fluid Leak.

Im afraid of how I will feel afterwards.

Im afraid I will be an invalid.

Im afraid I will make Mrs. Zebra too jealous of my being able to stay home while she works.

Im afraid they wont find ANY tumor at all.

Im afraid we will go bankrupt because of my illness.

Im afraid Mrs. Zebra will leave me for a healthier man.

Im afraid my work will let me go because of my illness.

Im afraid of being hospitalized (though its been on my list of things to experience in this life)

Im afraid my family will become even more distant than they already are.

Im afraid of being more lonely than I am now.

Im afraid adrenal insufficiency.
Im afraid of giving myself injections.

Im afraid of weening.

Im afraid of being alone.

Im afraid I will be a burden on my father-in-law.

Im afraid no one will visit me, as is common with Cushing's.

Im afraid my pituitary will never turn back on.

Im afraid my adrenals wont ever work right again.

Im afraid I wont know what to do with myself when I AM better.

Im afraid of my life being so different afterwards.

Im afraid nothing will happen.

Im afraid the surgeon will sneeze during surgery.

Im afraid an earthquake will strike during surgery.

Im afraid of an electrical outage during surgery.

Im afraid I wont be thought of.

Im afraid.

Posted via email from The weary Zebra: Zebra Snippets