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

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. 

Lost

As I am writing this, my brother is being memorialized back in Texas. On November 12th, 2012 he was in a horrible accident and is no longer with us. Luckily  no one else was hurt in the accident. But he left a huge hole in the hearts of his friends and family. Thanks to this wretched disease, I cant afford to fly back and be there like I should be. Ive been having to stop my steroid taper not only because of the stress of his loss, but of the constant attacks from family that, until Monday, wanted little to do with me. If you have read my blog before, or even know about Cushing's, you know that people dont understand this disease from the outside. And instead of trying to understand, or just being understanding, most people turn to neglect or even hate, to deal with you. Well, thats happening right now.

My brother and I were always closer than we were to our sister. Its not her fault, really. Just circumstance. But after she married and had children, I really tried to get to know her. Even if it were just as friends, I wanted to be part of her life. I wanted my nieces and nephews to have cousins to look after and big Christmas gatherings. But the last 10 years has been hard on everyone. Im chronically ill, our mother died of complications of what I believe was Cushing's, my brother was uprooted and moved out to the country because of financial reasons, and my sister has had to re-establish herself so many times that I wonder if she will ever find a place in her life where she can just let her guard down.

After our mom died, she really came and joined the family again. I know its hard. She only had three families to try to see: ours, her husbands, and her ex's. But at some point my sister decided she no longer wanted to return phone calls or voice mail from anyone from our side. I didnt want to push it, but after months of phone calls from me, my brother, my dad, and even my wife, we all just gave up. She claims it was a technical issue, but I dont know any handset issues that effect the kids cell's too. I still think its something to do with me, but she doesn't want to hear it from anyone so she just cut everyone out.

Thanks to this disease, I cant afford to fly back to Texas to pay my respects to my little brother who died at 23 years old. Thanks to this disease, I have lost the only mother Ive ever known. And thanks to this disease, I have lost my sister. She decided that, instead of talking to me and having a family, she would rather not deal with me. Even in the wake of our brother's terrible accident, she wont call. She writes to me via Facebook, but I wont read her words anymore. They hurt too badly. She knows we tried to call, but still wont call and talk to her brother, who may never recover from this disease.

So I sit here, absolutely lost. I dont know what to do. I want to talk to my sister again, but cant until she wants to. I dont know how to handle this. By all rights, it should have been me. He had his whole life ahead of him, while Ive been sick my whole life. If I had died, no one would have been surprised. It wouldn't hurt this bad. I wish I could fix all this. I wish I could fix our family and have everyone come out to our enchanted forest and have a good time. But how do I get from here to there? I dont know. I mean, Im working on my phone anxiety. This disease isolates you. Some days its all I can do just to be social online, let alone in person. I just wish I could get my sister to understand this. Or anyone really.

I escaped death 3 weeks ago when I went through surgery. But I should have died. My dad escaped death when he survived his motorcycle crash and surgery. So much death. I wish I knew what to do. I just want us to be family again. I love my sister, despite all faults. And I choose my family, and I choose her. Just like my father decided he didn't want me, but my dad did. I just dont know what to do.

Im so lost.

Fireworks

For the first time in my life, I had the opportunity to sit outside and watch the firework on Independence Day WITHOUT SWEATING!. Unfortunately, I was too pooped to make it down to the park. And it was raining off and on. So this is as close as I got. And I misjudged the distance of the fireworks when I snapped this picture because I thought this was a big as they were going to get. NOPE! But it was bitter sweet.
I got in to Seattle about 7:30 pm and missed the cafeteria here being open. So I had to either eat ramen or order out.

I ordered out. But NOTHING is open on the 4th around here except Pizza Hut. Oh well. So I ordered and decided, since it be about 2 hrs (yea, THAT busy) I would go try to find the fireworks. A nurse was opening up the 6th floor facing that way and we had about 3 couples join us. It was cool, all the sickos huddled around the window watching fireworks. The pasta got here early so I had to bolt, but it was still neat. I just really missed Mrs. Zebra. She is still in Texas, worried sick about me. I wish I could have shared it with her. It may be something we will do next year.

I couldn't sleep. Both lonely, and hot, It was hard to sleep. And teh battle between jet lag and cortisol was waged, and this time cortisol won. I didn't sleep until 2am local time (4am central) and I was up at 6:20am local time. But its nice outside. About 54°, and they are already warning of the heat wave this weekend: 84°! HA! Home away from home!

Posted via email from The weary Zebra: Zebra Snippets

Cushing's Study Today

Well, I go to the Cushing's study here in Dallas tonight. I was asked to write about when my symptoms first started, how Cushing' s has affected my life, and explain two instances where Cushing's has made life difficult. These questions were to get me thinking about this for the interview tonight. And the answers have to match. Thats what they said in the instructions. If they didn't match, I wouldn't get paid. The obviously have never met a Cushie before.
Anyway, I was also told to make a collage to help explain to someone what Cushing's means to me. What it is like. I couldn't fit it all on the 17X11" paper I used, but most of its on there. So I thought I would share it with you all. Maybe you all will have fun guessing what they all mean?

The Weary Zebra

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Another Rare Day

As tired as I am now, I know it is the price I have to pay for such a fun day yesterday. Dr. Ludlum says I have a variable tumor, that turns on and off when it wants to. My tumor was ON yesterday! We had planned on going to a good friend's graduation dinner but we had not seen a movie in a while. So we decided on a matinee viewing of Robin Hood. Very good, I might add.
But as we headed to the dinner (more like a late lunch), my dad called and wanted my advice on a laptop. I was feeling good so we decided to meet after lunch. The significance of this is that he has never owned a computer before. So we had a great time at the graduation lunch, I ended up soaking myself with crawfish before it was over and the spicy seasoning made my lips (and inner nose) tingle. I went through a pitcher of tea keeping the hot spice at bay but the pain was worth it!

We took my dad to the Apple store, since they are DA BOMB! He will be using this mac for years! He even went to a class this morning about his mac! He also got an air card for his mac to access mobile internet! So proud of him.
But as fun of a day it was, I am paying for it today and in more than one way. I felt like trash as soon as we got home. My dad walks so fast. He wore me out! I felt even worse today, but it was worth it! I just get so SAPPED and drained anymore. But when I have the energy, I try to use it.
I also upset a really good friend yesterday. She shared something that was private that I thought was not as private as it was. I was having such a good time, I didn't see that. She is hurt but hopefully will stay a friend and one day I hope to earn her trust back.
Below are some goofy pics Mrs. Zebra took of me while at Camp Cushie. Just thought I would add them since over all it was a good day yesterday.

The Weary Zebra

See and download the full gallery on posterous

Posted via email from The weary Zebra: Zebra Snippets

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!

Posted via email from The weary Zebra: Zebra Snippets