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...

You dont get it.

Things arent going so well for us. But something a friend left on my VM irked me enough to write. Note: None of what I am about to say has been embellished.

Someone who is perfectly healthy, and owns their own home, told me how lucky I was to have a job (they are unemployed and piddled around until their UI ran out, spent loads on beer and women). Im facing eviction, Im so sick that the 3hr daily commute is literately killing me. I spend about 1/4 of what I DO make on transportation to/from work. And the worst part is HE KNOWS THIS!

I understand depression, I live it every day. Its a struggle physically and mentally to get out of bed each day. So when someone that is COMPLETELY PHYSICALLY HEALTHY tells me that I am "so lucky", its not just that they don't GET IT, they don't care too. I would trade situations with them in a hear beat. Trade being chronically ill with a disease said to be so rare, it doesn't exist, a non-functioning pituitary gland, and the fatigue of a 90 year old man, the bills piling up, the constant fear of homelessness, with that of a fairly healthy, unemployed home owner.I love the guy like family, but c'mon!

Mrs. Zebra's UI ran out and she hasn't been able to find work. Ive been busy either working or doing work at home for people to get my name out there. When I can make my own schedule, I can do some work. But that is hard to tell an employer. We've had some help from good friends, who I like to refer to as "adopted family".

Christmas was rough. I miss my brother, and I think my blood relatives are mad at me. Mrs. Zebra and I had a very quite Christmas yesterday. Just tried not to think about the fact that our first Christmas in our new home might be our last. I have a little work in the pipeline, but it could take until March to pay out. I hate asking for help, from anyone, but we desperately need it. If you can help, it would be much appreciated. If you use paypal, you can click the link on the top, left of this page. Otherwise, if you want to help, send me a message.

The very scared and humble weary zebra.

Communication Disconnect

Today's blog comes to us from a good friend in the Washington area. Hopefully we will see her when we go to Seattle in 2 weeks. 

With Cushing's, there can be a huge disconnect with how we process information both input and output, especially while talking. That is why I usually like to email or instant message, or even text instead of talking on the phone or talking face to face. It has always been like this as long as I can remember, but with the tech revolution it has been easier for me to communicate my thoughts and feelings to people with tech ability. Below is what my good friend said to me, and I agree whole heartedly.

"Whenever I have to wait somewhere I organize (everything) it and write notes to myself so that when I get on the phone with these people I don't sound like an idiot. They get so irritated when you overstate what you need. I sometimes will tell them in advance when they answer. "listen..before we start I want you to know I have a brain tumor. This kind of tumor affects my thought process in a way that I can't articulate myself with a short explanation and a long explanation may even miss the point so please bear with me. It also affects me in a way that I am exhausted most of the time and I'm easily stress because I lack the proper stress and energy hormones so some of these issues weren't addressed in a timely manner. Is it possible for us to do this through IM, email, fax or snail mail so that I can get the assistance I need from another person or have time to think out your response and my answer?" I USUALLY get a decent response.

I think that when they mention that people with Cushings become reclusive that this communication problem is part of the reason. What I've noticed is that people with Cushings seem to have above average intelligence and most of us do more in a day than the average Joe does in a week - when we're sick- when we're not sick we can fit a month ... See Moreinto a week. But when we're sick something misfires in our processing. Whatever step happens between the information going out or coming in gets garbled in transition. We CAN understand and we KNOW what we want to say or do but it theres a pause for us. It makes us seem like we don't know what they mean. Most of the people around me get frustrated because they are accustomed to me being sharp. They're already talking about something else by the time I get my original response out. Some even get mad because they think I'm not paying attn. Some get frustrated because I subconsciously just keep talking while I'm waiting for the real answer to come out in order to keep them from changing the subject or having a long awkward pause or just hoping that whatever comes out will include the answer. so...I just dont start or get involved in intelligent conversations because I'm so slow."

The Weary Zebra and Friends

Posted via email from The weary Zebra: Zebra Snippets

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

Posted via email from The weary Zebra: Zebra Snippets