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.

I crushed my ladybug


Thats what her nickname was. Ladybug. Our first night in Seattle, I ran and made a copy of the key to our home, and gave her a ladybug key. She loved that key. I crushed my ladybug. I drove her away. I didnt mean to. Im sick. But I didnt have the tools to control my cortisol-fuled temper. 

Ive been bawling nonstop for an hour. She wont pick up my phone. If she would, Id call her. If I wants afraid of making her mad, I would call her. BUt I am. I need her so bad. And shes gone. The one who stood by me when I was covered in urine and blood from brain surgery. Shes gone. Because the surgery didnt fix me, and because no one gave me tools to fight the mood swings. The most wonderful women in the world left me. 
She took half of me with her, all the good parts. 

Im left in pain, a pain so deep I will never escape. 
I dont deserve to. 
I deserve to die. 
And we have ice on the roads tomorrow. 
convenient, I think. 
One can hope to be sideswyped...

Alone and Sick


Today was especially hard. Mrs. Zebra would help me out on days like this. I honestly dont know how I even made it to work and home. On days like today, she would drive me to work or I would get enough support that I could barely make it in, and would let me relax when I got home. I fell out of bed this morning. I literally had to crawl to my steroids and take some. My memory decided to elude me and I couldnt find my cane. It was in the car. The last week, Ive been on a steroid high, my adrenals working overtime. They are gone now; empty. Drove like 10 under the speed limit all the way to work, after running late as it was. Just couldnt get going. I hurt constantly, but worse now. Depression really does hurt. After work, I had to pick up an Rx so I stopped by the store on the way home. It took me an hour to pick up a frozen pizza, and my Rx. All the electric carts were taken. My brain fog was in full effect as I wondered the 20°F parking lot for nearly 20 min, because I couldnt remember where I parked. Turns out I passed it twice, once being when I exited the store. I called my dad today, and he just told me to "get over" my illness. Because brain tumors are easy to ignore, right?

I usually cheerfully take these trials on, knowing my sweetheart is home waiting to hug me. I have no reason to live now. Why fight?

What is the point?

Depressed and in pain Zebra. 

So hard


I saw the therapist today. He saved me from the psych ward. The doctor saw me break down from entering the clinic, since the moon of my life wasn't there, and wanted to admit me. He brokered a deal where I give my firearms to a friend. Hopefully I can get some tools to recognize the physical symptoms of the hulk before I wake up him again, so I can at least escape and not hurt anyone. While I try and hold it together, read this. 

My Wichita Girl
She is my world
She came into my life
Then became my wife
It was us against the world
Me and My Wichita Girl

I was in a dark place
And then I saw her face
Her dimpled smile
blond hair blue eyes
and a body to die for
I had to speak to her
Then she messaged me
That wichita girl.

When we first met
my heart skipped a beat
I couldn't believe it
She really drove to met me
She became my world
My wichita girl

When my mama died
When my brain did fry
When I almost died
she was standing right beside me
When I couldn't walk
When I couldn't talk
when I needed a helping hand
She is the best wife in the land
My wichita girl

Now Im all alone
Now Im on my own
A broken man
That great big blonde
is broken too
and just couldn't withstand
But I still pine
and dream at night 

For my wichita girl.

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. 

Nobody's Listening

What day is it? Monday?
I thought it was Thursday.
I thought yesterday was too.
What do you mean I wasn't at work
Yesterday? I thought you said
Yesterday was Sunday, not Thursday?
Is it true?
No, I'm fine.
(The ants crawling over your face
They are supposed to be there.)
What do you mean I don't look good?
(I can barely stay awake, this isn't fair.)
What do you mean? (Did I fall asleep in my chair? )
I haven't got a call since you've been standing there.
Fuck this, 
I'm stepping out

When did the hall become a tunnel?
Just focus. This will all be over soon.
The ants are crawling. Be careful.
Tomorrow you have an interview.
Like that will help.
The stairs are so far down. I'm dizzy.
The ants are following.
The cat is back. Just keep busy.

And I just want to be home again.
Step. Breathe. 
Step, Step Breath
Step. Breathe.
Hold the rail. 
Step. Breathe.
Step, step breath
Step Breathe.
Use the cane.
Step. Breathe 
Step. Breathe.
Hold the rail.
That was close. 
Step. Breathe.
Step. Breathe.
To the bottom
Out the door.
The car feels so far away.
I just need to get there.
Step. Breathe.
Step. Breathe.
I just have to make it
Through the day.
And the next. And next.
Step. Breathe.
I'm still in the tunnel,
Now it's outside.
Nothing looks real.
Pastel colors.
It's all made of chalk.
The ants look real enough.
(but they aren't)
People are looking at me.
Have I been talking out loud?
Sorry, just thinking out loud
(please someone help me)
Get in
Jack in
Crank it up,
Roll them down
I need to wake up
Get the pain down
Hold it
Hit play
Don't think about the ants.
Where am I?
What's their deal?
Why am I driving?
Fuck off ass wipe.
I was at work
Taking a break
Now Im here
Swerving jerks
What day is today?
Still? Are you sure?
Maybe tomorrow will be better.
Maybe the ants will go away
And the cat will follow
And time will make sense
Not like today
And the tunnel will lift
And colors return
And life will fill this man
Or someone will learn
What this is like,
your own personal hell
Where yelling and screaming
And feeling insane
From raging and fighting
And panic are the main
names of the game
That you'd rather play
Because it masks the pain
And gives you energy
And sometimes focus
And clarity to see
Even for a moment,
Before the waves
Of rage and and self hate
Wash over,
That the last few weeks
You were pushing too hard
Killing yourself
Getting charred
And burnt out
And I tell my friends.
They can't help
Most don't understand
And in that pit,
Nobody's Listening
And I tell my family
But few are there
Most chosen
And there happily
But can't help
And in that pit,
Nobody's Listening.
It hasn't been this bad in years.
I'm falling apart.
I'm being dragged into that tunnel
By my worst fears.
And even the doctors join in.
And it feels
And seems
And looks
As if 

The last few weeks, I've been suffering from severe adrenal fatigue. The day I described above actually happened to me recently. I feel like this just takes over and I have been told I don't need extra steroids. That may be true, and I'm sure it is on average, yet my body doesn't know that.
For the past few months prior, I started what is called by some as "rapid cycling". My cortisol highs would happen in the early morning and evening, with two crashes, as it felt. Then, I remember realising that wasn't happening anymore. And my hallucinations were starting back up, with new ones. The ants are new.
I decided to take 5mg of hydrocortisone to help alleviate the symptoms. Two hours later, nothing. I dosed again, another 15, and I felt more normal. This broke the stagnate low, and I'm cycling again. Now I can see what was happening.
The worst part was being suicidal, but not having the energy to act on it. The irony being if I had, I wouldn't be suicidal. But I could have stepped into oncoming traffic, and the thought or dream occurred often. And breaking the stagnation helped me feel more creative, even if it was shit. It is from the heart.
I don't know how much longer I have. I'm scared, and feel like I have no hope.
The Weary and Worried Zebra

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

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

Good News Everyone!


Well, last week I saw my new (hopefully) doctor and did a follow up at Swedish. The new doctor is a natureopath who used herbs along with western medicine to treat illness. She wants me to try an herb from India that regulates adrenal function and cortisol. That sounded good until I went to Swedish.

At Swedish, they acted as if they actually believed me. They sent me home with a jug to pee in and told me that they wanted to try me on one of two medicines. Corcept and Signifor.

Here is the catch: I can get Signifor, a $25,000/yr drug, for free if I can prove I am having cushing's symptoms. If I get on Corcept, my health insurance is free. And from what I understand, signifor works better and is more long term. So, I dont know what will happen. NORD wants to cancel my insurance because they didn't tell me I had to be on any medication for the program I am enrolled in. So I will probably loose my access to medical care until I can get approved for charity care, but they don't cover lab work . Which is a big deal seeing as the original testing came to just over $25,000 (everything cushings related must be a multiple of 5) and the surgery was around $50k.

This week also saw two other good things. Well, sort of. A very good couple of friends who were domestic partners ended this part of their relationship and one moved in with us to get back on their feet. I don't transition well, but its been easier with them helping us with bills and house work. Its going to be a good thing. We also finally saw a raise in our food stamps. Substantial raise. I wont get into how much, but we don't have to worry about food for a while.

I cant get hold of the place I was applying for close to home. They wont even return my calls. So Im stuck driving an hour each day and its killing me. But all in all, it was a stressful but good week.

Thanks again for reading!

The Weary, and cautiously optimistic, Zebra. 

What a week.


I had the most amazing week of my life, and it was only for two days. I can't go into too much detail, but I will try my best to fill you all in.

I was in Phoenix teaching a nationwide team of medical professionals how to teach Drs, nurses and insurance companies how to use whole healing through treating the patient's whole as a person and not just their disease. It focused on patients with Cushing, a rarely diagnosed type of brain tumor in the pituitary gland . I had to go alone, as we had no one to watch the cat while gone.

It was amazing how interested and goal oriented each member of the sales and patient advocates were. They were so grateful for our input and really validated what we've gone through. They agreed with us that this type of tumor doesn't just wreak havok on your brain. It effects your whole system and subsequently your whole life. Therefore, the medications, radiation and chemo shouldn't be the only defense against this disease. It's so exciting to KNOW that there are real life angels out there that are on our side and fighting for us. Our disease usually falls through the cracks because it is so rarely diagnosed, that the diseases that are more rampant like breast cancer, leukemia, and heart conditions get the most attention and response due to the per capita patient to assistance ratio they get treated first because it's easier and more profitable.

I went with a fellow cushie and we met two others when we landed. In the two days that followed, I met many of you who read this blog. They were sales reps who are going to teach doctors about us, and about how many doctors have Cushing patients and don't even know it.

They each had to go through a month long "diagnosis" simulation where they got a glimpse of what it's like to just try and get validation. Then, they were walked through a 30min rundown on each of our lives using a sales app and our stories. Finally, they were treated to a very brief 45min talk where we shared what Cushing's has done to us and how hard living day to day was.

And afterwards, they called us heroes.

Let me repeat that. They. Called. Us. Heroes.

It still shocks me.

Heroes don't suffer like this.
Heroes don't get the shift like this.
Heroes do something to better others lives.

But I guess we are doing that last bit.

Between the steroids that the stress of it all caused to flow through my veins, and the extreme feeling of hope I feel again, I'm still coming down off of the high it created. Being in the midst of people, normal healthy people, who care about you, who believe you, who believe IN you, was something I have never experienced in my life.

Those of you who know what company we helped, please know that from the first email through my getting off the plane back home, I was treated with more dignity, more care, and more understanding than the vast majority of the health care profession. And I think I know why.

The man who diagnosed me was THERE! He left practice to consult with the people who are reaching out to doctors to re educate them on the reality of Cushing's. I was so upset to see him go, but he is truly doing "the work of God" as the saying goes. And it seems he is much happier too.

If I hadn't gone, I think I would have completely lost hope. I was close, for sure.

And in a way, I have. I got to meet someone who has been "cured" for years, and she explained to me that she never really got better. She just didn't get worse. So my goal is no longer getting better. My goal is to rearrange my life to suit this disease and what it has done to my body. It isn't ideal, but it is possible.

And it's a good step in the right direction, right?