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...

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

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?