tag:blogger.com,1999:blog-12854354758219873252024-03-13T04:55:53.812-07:00The Weary Zebra- Cushing's Patient w/o InsuranceMy journey to being diagnosed with Cushing's Syndrome and getting treated... with and without insurance.The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-1285435475821987325.post-25632639011617731112014-01-07T02:14:00.001-08:002014-01-07T02:14:25.195-08:00Waking Nightmare<div dir="ltr" style="text-align: left;" trbidi="on">
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I know I have to be strong. I know that I have to be a better person. But I know I failed as a husband and somehow as a friend. And no one told me. Now I live this nightmare every day.<br />
<br />
I dont know if she remembers, but Mrs. Zebra would keep me calm when I would wake from nightmares where she was gone, and I was alone. She would tell me that "We are stuck, you and me. Im not going anywhere." I wake from short stints of sleep, screaming or crying, and its not a dream. Its my reality. The one thing keeping me going through all the bullshit was her. When I came to after my tumor surgery, and she was there, I knew I had to be tough. I know that if I cant fix myself in time to save our marriage, I wont survive. I know because its already happening.<br />
<br />
I was diagnosed with PTSD a couple of weeks ago. Something I saw while visiting friends made me see things I had repressed, including times the love of my life and I argued. I wish I could tell her. I would relive abuse from my childhood and block it out. She would get the brunt of it until I came to. Her depression and her PTSD was worse than she let on. If she had told me, I would have dropped everything to get her the help she needed. But she is gone.<br />
<br />
I lost my job on Friday. The car she left me will be repoed soon. I dont know what to do. And I cant even tell if Im awake or asleep. No one seems real. Between the lack of sleep, and the one thing that kept me grounded for the past 10 years being ripped away from my life, I cant function. I just want a chance to work it out with my love. Maybe court online. Something. I just need her. I want to heal her. But if I cant get passed this, I dont know what to do. I cant live without her.<br />
<br />
She is my PTSD safe place. And she doesnt even know it. So Im slowly going insane. No one I know knows my pain. She is my soulmate. I want to go to her so bad. If she would just talk to me, and tell me she loves me, and she wants to work things out, I dont care how long it takes. I will do whatever I have to. But how do you prove that your mental issues are under control?<br />
<br />
The day she left, she told me she loved me.<br />
<br />
I have to believe she was telling me the truth.<br />
<br />
But the hospital scares me. I dont have anyone to support me now.<br />
<br />
Without her, I have no reason to live. Half a man is useless. So I am useless. This may be my last post. Ive started my last letters to friends and family if things turn that way. I dont plan on it, but she means the universe to me. I could live in a box, and as long as Im with her, I dont care.<br />
Two months ago, we decided our girl would be named Olivia. Our son, Benjamin. I cant just let that go.<br />
I pray that she cant either, and is just very ill. I want her to let me focus on her, and not the other way around.<br />
If you are reading this, my love, and I dont know if you are, know that we have been through worse. You just dont remember. And we can get through this, together. Ill come to you. Ill support us. Thats what YOU need. I dont care how sick I am, I am nothing without you. Just knowing that your love is strong is all I need. Ill do the rest. Know that.<br />
<br />
Every day is a living nightmare. Something I have dreaded for a decade. Please, my love, just talk to me.<br />
<br />
I love you.<br />
<br />
Please know that.<br />
<br />
I will be checking in to a inpatient facility soon. I have to work the courage to. And Im afraid to be evicted. I just dont know what to do after my brother dying, the love of my life leaving, the memories flooding back, and the job loss. You are my anchor, just you. I know you dont think you are a good wife. I dont know who told you that, but even at MY worse, I never said that. You are the best. The best for me. The best for us.<br />
<br />
Im not making sense.<br />
<br />
-The lost zebra</div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-69707404290815052672013-12-10T19:28:00.000-08:002013-12-10T20:09:29.661-08:00My life is falling apart<div dir="ltr" style="text-align: left;" trbidi="on">
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I saw my wife last night.<br />
<br />
<br />
She was sitting right next to me.<br />
<br />
She looked so worried.<br />
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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.<br />
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.<br />
<br />
Ill forgive her<br />
Its ok<br />
I understand<br />
I just need you<br />
Without you, breathing is a chore<br />
Without you, there is no point in getting out of bed<br />
I don't want to eat<br />
or bathe<br />
or anything<br />
To be rejected by the one person who loves you more than anything<br />
The one person who said that no matter what, no matter how sick we were, that they would be there<br />
And for unconfirmed reasons, she's just gone.<br />
I have the phone tied to me at all times, just waiting for a phone call that never comes<br />
Waiting for an email that never arrives<br />
A text message 3 weeks late in arriving<br />
And any day, both our phones will be turned off<br />
And that will be the end, Im sure<br />
<br />
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.<br />
I didnt mean for any of this to happen<br />
I was seeking help<br />
So was she.<br />
Why not let us go to counseling?<br />
Why not talk to me?<br />
<br />
And then Allsup decided to drop me for disability.<br />
Ill have to become homeless to get any help.<br />
Guess thats the next step.<br />
<br />
She was here, and then gone<br />
Maybe next time, we can talk<br />
Maybe next time, she will stay<br />
Dr says that wouldn't be good, for her to appear and talk to me<br />
I don't think I would be too upset.<br />
<br />
<br />
<br /></div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-47594440113593140292013-12-09T23:30:00.000-08:002013-12-09T23:30:00.587-08:00I crushed my ladybug<div dir="ltr" style="text-align: left;" trbidi="on">
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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. </div>
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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. </div>
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She took half of me with her, all the good parts. </div>
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Im left in pain, a pain so deep I will never escape. </div>
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I dont deserve to. </div>
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I deserve to die. </div>
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And we have ice on the roads tomorrow. </div>
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convenient, I think. </div>
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One can hope to be sideswyped...</div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-12944358123776498602013-12-05T20:06:00.001-08:002013-12-05T20:08:01.037-08:00Alone and Sick<div dir="ltr" style="text-align: left;" trbidi="on">
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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?</div>
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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?</div>
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What is the point?</div>
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Depressed and in pain Zebra. </div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-53883200529303243062013-12-02T22:54:00.003-08:002013-12-02T22:59:57.271-08:00So hard<div dir="ltr" style="text-align: left;" trbidi="on">
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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. </div>
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My Wichita Girl</div>
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She is my world</div>
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She came into my life</div>
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Then became my wife</div>
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It was us against the world</div>
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Me and My Wichita Girl</div>
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I was in a dark place</div>
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And then I saw her face</div>
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Her dimpled smile</div>
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blond hair blue eyes</div>
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and a body to die for</div>
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I had to speak to her</div>
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Then she messaged me</div>
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That wichita girl.</div>
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When we first met</div>
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my heart skipped a beat</div>
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I couldn't believe it</div>
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She really drove to met me</div>
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She became my world</div>
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My wichita girl</div>
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When my mama died</div>
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When my brain did fry</div>
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When I almost died</div>
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she was standing right beside me</div>
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When I couldn't walk</div>
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When I couldn't talk</div>
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when I needed a helping hand</div>
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She is the best wife in the land</div>
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My wichita girl</div>
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Now Im all alone</div>
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Now Im on my own</div>
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A broken man</div>
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That great big blonde</div>
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is broken too</div>
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and just couldn't withstand</div>
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But I still pine</div>
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and dream at night </div>
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For my wichita girl.</div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com1tag:blogger.com,1999:blog-1285435475821987325.post-90435319310426627142013-12-01T14:07:00.000-08:002013-12-01T14:07:27.509-08:00The Void and The Sun<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">"</span><i style="font-family: Arial, Helvetica, sans-serif;">Moon of my Life.</i><span style="font-family: Arial, Helvetica, sans-serif;">"</span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><div style="font-weight: normal; text-align: center;">
Kahl <a href="http://gameofthrones.wikia.com/wiki/Drogo">Drogo</a></div>
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"<i>My Sun and Stars.</i>"</div>
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―<a href="http://gameofthrones.wikia.com/wiki/Daenerys">Daenerys</a> Targaryen</div>
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<span style="font-size: small;"><span style="font-weight: normal;">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. </span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">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. </span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">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. </span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">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. </span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">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. </span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">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:</span></span></div>
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<span style="font-size: small;"><span style="font-weight: normal;">My love, </span></span></div>
</span><br />
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; font-size: medium; font-weight: normal; line-height: 16px;">
You're my world, the shelter from the rain<br style="box-sizing: border-box;" />You're the pills that take away my pain<br style="box-sizing: border-box;" />Youre the light that helps me find my way<br style="box-sizing: border-box;" />You're the words when I have nothing to say</div>
<span style="font-family: Arial, Helvetica, sans-serif;"></span><br />
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<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; font-size: medium; font-weight: normal; line-height: 16px;">
And in this world where nothing else is true<br style="box-sizing: border-box;" />Here I am still tangled up in you<br style="box-sizing: border-box;" />I'm still tangled up in you<br style="box-sizing: border-box;" />Still tangled up in you</div>
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; font-size: medium; font-weight: normal; line-height: 16px;">
You're the fire that warms me when Im cold<br style="box-sizing: border-box;" />You're the hand I have to hold as I grow old<br style="box-sizing: border-box;" />You're the shore when I am lost at sea<br style="box-sizing: border-box;" />You're the only thing that I like about me</div>
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; font-size: medium; font-weight: normal; line-height: 16px;">
And in this world where nothing else is true<br style="box-sizing: border-box;" />Here I am still tangled up in you<br style="box-sizing: border-box;" />I'm still tangled up in you</div>
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; font-size: medium; font-weight: normal; line-height: 16px;">
How long has it been since this storyline began<br style="box-sizing: border-box;" />And I hope it never ends and goes like this forever</div>
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In this world where nothing else is true<br style="box-sizing: border-box;" />Here I am still tangled up in you, tangled up in you<br style="box-sizing: border-box;" />Im still tangled up in you<br style="box-sizing: border-box;" />Still tangled up in you</div>
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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. </div>
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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?</div>
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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. </div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-90380605659293076762013-08-03T23:49:00.003-07:002013-08-03T23:49:24.087-07:00Nobody's Listening <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Trebuchet MS, sans-serif;">What day is it? Monday? <br />
I thought it was Thursday. <br />
I thought yesterday was too. <br />
What do you mean I wasn't at work<br />
Yesterday? I thought you said <br />
Yesterday was Sunday, not Thursday? <br />
Is it true? </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">No, I'm fine. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(The ants crawling over your face<br />
They are supposed to be there.) <br />
What do you mean I don't look good? <br />
(I can barely stay awake, this isn't fair.) <br />
What do you mean? (Did I fall asleep in my chair? )<br />
I haven't got a call since you've been standing there. <br />
Fuck this, </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'm stepping out</span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">When did the hall become a tunnel? <br />
Just focus. This will all be over soon. <br />
The ants are crawling. Be careful. <br />
Tomorrow you have an interview. <br />
Like that will help. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The stairs are so far down. I'm dizzy. <br />
The ants are following. <br />
The cat is back. Just keep busy.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><br />
And I just want to be home again. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Step. Breathe. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Step, Step Breath<br />
Step. Breathe. <br />
Hold the rail. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">
Step. Breathe.</span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">Step, step breath</span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">Step Breathe. <br />Use the cane. <br />
Step. Breathe </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">
Step. Breathe. <br />
Hold the rail. <br />
HOLD IT! <br />
sigh<br />
That was close. </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">Step<br />
Step. Breathe. <br />
Step. Breathe. <br />
To the bottom <br />
Out the door. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The car feels so far away. <br />
I just need to get there. <br />
Step. Breathe. <br />
Step. Breathe. <br />
I just have to make it<br />
Through the day. <br />
And the next. And next. <br />
Step. Breathe. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'm still in the tunnel, <br />
Now it's outside. <br />
Nothing looks real. <br />
Pastel colors. <br />
Styrofoam <br />
It's all made of chalk. <br />
The ants look real enough. <br />
(but they aren't) <br />
People are looking at me. <br />
Have I been talking out loud? <br />
Sorry, just thinking out loud <br />
(please someone help me) </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">Unlock <br />
Get in<br />
Jack in<br />
Crank it up, <br />
Roll them down <br />
I need to wake up<br />
Get the pain down<br />
Inhale <br />
Hold it<br />
Exhale<br />
Hit play</span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">Don't think about the ants. </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">HONK HONK! <br />
Where am I? <br />
What's their deal? <br />
Why am I driving? <br />
Fuck off ass wipe. <br />
I was at work <br />
Taking a break <br />
Now Im here<br />
Swerving jerks <br />
What day is today? <br />
Thursday <br />
Still? Are you sure? <br />
Ok<br />
Maybe tomorrow will be better. <br />
Maybe the ants will go away<br />
And the cat will follow <br />
And time will make sense<br />
Not like today <br />
And the tunnel will lift<br />
And colors return<br />
And life will fill this man<br />
Or someone will learn<br />
What this is like,<br />
your own personal hell<br />
Where yelling and screaming <br />
And feeling insane<br />
From raging and fighting<br />
And panic are the main<br />
names of the game<br />
That you'd rather play<br />
Because it masks the pain<br />
And gives you energy <br />
And sometimes focus <br />
And clarity to see<br />
Even for a moment, <br />
Before the waves <br />
Of rage and and self hate<br />
Wash over, <br />
That the last few weeks<br />
You were pushing too hard<br />
Killing yourself <br />
Getting charred <br />
And burnt out </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">And I tell my friends. <br />
They can't help <br />
Most don't understand <br />
And in that pit, <br />
Nobody's Listening </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">And I tell my family <br />
But few are there<br />
Most chosen<br />
And there happily <br />
But can't help <br />
And in that pit, <br />
Nobody's Listening. </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">It hasn't been this bad in years. <br />
I'm falling apart. <br />
I'm being dragged into that tunnel <br />
By my worst fears. <br />
And even the doctors join in. <br />
And it feels <br />
And seems<br />
And looks<br />
As if </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;">No<br />
Body<br />
Is<br />
Listening </span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div dir="ltr">
<span style="font-family: Trebuchet MS, sans-serif;"><i>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. </i><br />
<i>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><br />
<i>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. </i><br />
<i>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></span></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">I don't know how much longer I have. I'm scared, and feel like I have no hope. </span></i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The Weary and Worried Zebra </span></div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-77048765885795286732013-07-02T21:56:00.000-07:002013-07-02T21:57:05.062-07:00Really? I mean REALLY?<div dir="ltr" style="text-align: left;" trbidi="on">
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I dont get it.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
The Weary and very Annoyed Zebra<br />
<br />
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.<br />
<br />
<a href="https://www.giveforward.com/fundraiser/n9l2/the-iveys-fund-drive" target="_blank">Click here to Donate to our Rent fund.</a><br />
<br />
In gratitude,<br />
A Humble Zebra</div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-5762402162579671122013-05-21T03:03:00.000-07:002013-05-21T03:03:43.350-07:00Shackled by my Sentence. <div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
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.<br />
<br />
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.<br />
<br />
I didnt sleep well at all last night.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br /><br />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.<br /><br />Its pouring outside. Sounds so nice.<br />
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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.<br />
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No wonder my family wont speak to me. Im useless.<br />
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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.<br />
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Did anyone see the warden?<br />
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The Wired Weary Zebra</div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com1tag:blogger.com,1999:blog-1285435475821987325.post-72561369019032973392013-02-22T15:38:00.000-08:002013-02-22T15:38:50.017-08:00Emotional Blackmail and Cushing's<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Arial, Helvetica, sans-serif;">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:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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 <u>many</u> 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.<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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. <b>I </b>understand you are hurting. <b>I understand </b>that feeling, like sinking into a hole of worthlessness. <b>I understand</b> what its like to not have enough energy to wipe yourself in the bathroom, let alone get out of bed to do so. <b>Understanding</b> goes both ways. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The Emotionally Drained Weary Zebra</span></div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com2tag:blogger.com,1999:blog-1285435475821987325.post-57873101974660462442013-02-04T17:19:00.002-08:002013-02-04T17:20:33.746-08:00Good News Everyone!<div dir="ltr" style="text-align: left;" trbidi="on">
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Thanks again for reading!<br />
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The Weary, and cautiously optimistic, Zebra. </div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-19989104153258548732013-01-17T15:57:00.001-08:002013-01-19T21:11:46.093-08:00What a week. <p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>And afterwards, they called us heroes. </p>
<p dir=ltr>Let me repeat that. They. Called. Us. Heroes. </p>
<p dir=ltr>It still shocks me. </p>
<p dir=ltr>Heroes don't suffer like this. <br>
Heroes don't get the shift like this. <br>
Heroes do something to better others lives. </p>
<p dir=ltr>But I guess we are doing that last bit. </p>
<p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>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. </p>
<p dir=ltr>If I hadn't gone, I think I would have completely lost hope. I was close, for sure. </p>
<p dir=ltr>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.</p>
<p dir=ltr>And it's a good step in the right direction, right? </p>
<div class='separator' style='clear: both; text-align: center;'> <a href='http://lh3.ggpht.com/-p-92LLbCvr8/UPt8eXe6ulI/AAAAAAAANyo/YLUGMELTRIM/s1600/IMAG0375.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='http://lh3.ggpht.com/-p-92LLbCvr8/UPt8eXe6ulI/AAAAAAAANyo/YLUGMELTRIM/s640/IMAG0375.jpg' /> </a> </div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com2tag:blogger.com,1999:blog-1285435475821987325.post-49588252728361438392012-12-26T18:00:00.000-08:002012-12-26T18:40:59.859-08:00You dont get it.<div dir="ltr" style="text-align: left;" trbidi="on">
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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. </h3>
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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!<br />
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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!<br />
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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".<br />
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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.<br />
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The very scared and humble weary zebra. </div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-75490076400265952522012-11-17T11:51:00.000-08:002012-11-17T11:51:56.015-08:00Lost<div dir="ltr" style="text-align: left;" trbidi="on">
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Im so lost.<br />
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com1tag:blogger.com,1999:blog-1285435475821987325.post-79140625826509121672012-11-07T20:31:00.000-08:002012-11-07T20:33:38.788-08:00Letter to the new Governor!<div dir="ltr" style="text-align: left;" trbidi="on">
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<i><span style="font-family: Arial, Helvetica, sans-serif;">I wrote and mailed this letter in to Governor Pro-tem Inslee and emailed his campaign. Hopefully, he can pull some strings to help us. </span></i><br />
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Dear Mr. Inslee</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Let me first congratulate you on your victory of being elected as the new governor of the great state of Washington. I was really pulling for you, and the fact that you are our governor makes us feel much better about living here. My wife and I, as well as several people we know in Tacoma, canvassed and worked for your campaign the last few months either knocking on doors or making calls to voters. We hope that you will kick some butt as out governor. </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">The reason I am writing to you is that I am in need of your help. Before I get too far into that, let me tell you about myself. My wife and I recently moved here from Texas to be close to my doctors here. On December 30th, we will have been here one year. I have a rare disease called Cushing’s disease. It is, usually, a tumor in one’s pituitary gland that makes your body produce excess cortisol which effects every system in the body. As you may or may not know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands and is vital to regulate the body’s cardiovascular functions and metabolism, to boost the immune system and to fight inflammation. But its most important job is to help the body to respond to stress. The adrenal glands release cortisol in response to stress, so athletes, women experiencing pregnancy, and those suffering from alcoholism, panic disorders and malnutrition naturally have higher-than-normal levels of cortisol.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">People with Cushing’s Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of “fight or flight,” which ravages the body and tears down the body’s major systems including cardiovascular, musculo-skeletal, endocrine, etc.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Symptoms vary, but the most common symptoms include rapid, unexplained weight gain in the upper body with increased fat around the neck and face (“moon facies”); buffalo hump; facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding and steroid-induced acne.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Attached, you will find a sketch of a typical Cushing’s patient. As you can see, the effects of the disease on the body are dramatic.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Worse, the psychological and emotional effects of having a chronic, debilitating and disfiguring disease range from distressing to demoralizing.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Imagine that, in the space of a year, you became unrecognizable to those around you and to yourself. You look in the mirror, but the person staring back at you is a stranger. You endure the stares and looks of pity from those who knew you before Cushing’s, fully aware that they believe you have “let yourself go” or otherwise allowed this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying and resolve to live your life in a stranger’s body. While I have been living with this my entire life, this still affects me because I have lost family that went from accepting me to thinking I was lazy, fat, etc. </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">You feel increasingly sick, but when you explain your array of symptoms to your doctor, you are dismissed as a depressed hypochondriac who needs to diet and exercise more. Worse, your family members think the same thing — and are often quick to tell you how you need to “change your lifestyle” to overcome the effects of what you eventually will discover, once properly diagnosed, is a serious and rare disease.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">If only it were so simple! No one would choose to have Cushing’s. Those of us who have it would not wish it even on our worst enemy.Most people with Cushing’s long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">One of the worst parts about this disease is the crushing fatigue and muscle wasting/weakness, which accompanies hypercortisolism. Not only do we become socially isolated because of the virilzing effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing’s patient. Holding down a job has been difficult, especially with the economy like it is. So in 2010, I had surgery at Swedish Medical Center in Seattle. I flew from Texas to find a cure. Instead, I found that it can get much worse. The pitutary is the command center hormone wise, and I am missing almost 3/4 of it, trying to remove a tumor that as far as we can tell is still active. After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body’s production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people’s adrenal glands never return to normal, and those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy and extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles and bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can’t feel the effects of the muscle-wasting and bone deterioration because of the anti-inflammatory action of cortisol. Upon weaning, however, these become painfully (literally!) evident.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue (”like a wet cement blanket laid on top of me”); weakness and exhaustion; nausea; headache; vomiting; mental confusion. It is imperative for people who are on replacement steroids after Cushing’s surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possibility of adrenal insufficiency in the event of an adrenal crisis.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">People who have struggled with Cushing’s Syndrome all hope to return to “normal” at some point. Though none of us want to have Cushing’s, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing’s symptoms within a few years of surgery or other successful treatment, and a good quality of life can be achieved. But regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor and lead to shortened life expectancy and diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism. Recovery to this point has been grueling. So we moved up here thinking that we would be closer to people who understand the situation and a better social safety net. </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">While both are still very true, especially compared to Texas, we are not doing so well. My wife, Kaylie, also cant work due to a nerve issue with her hands and feet but is getting the help she needs thanks to the doctors we are now able to see. But we are still on the verge of homelessness. I worked what I could during the summer, but was fired, and even though it wasn't gainful employment I was denied disability because of it. I don't qualify for unemployment benefits, and my wife’s is about to run out. On top of that, DSHS keeps requiring us to turn in paperwork that either doesn't exist, they already have, or they wont specify what they need. Thats just so we can get $50 a month in food stamps and maybe get me Medicaid. </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">We are struggling just to make sure food is on our plates and all the bills are paid. </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Governor Inslee, we need your help. Is there any way you can intervene in my disability case on my behalf? Or help us get more aid for medical and food? We aren't looking for handouts, but how is anyone supposed to heal so they can get back to work when they have to constantly worry about where their next meal is coming from? We are down to one meal a day to make what we have last as long as we can. I don't want to live on disability. I want to work. I want to help make this state as great as it can be, but with the symptoms still present, and the stress of every day life making them worse, if something doesn't happen soon I wont be around in a year or two. Between my condition and the poverty, this will kill me. But if this doesn't kill me, I want to enter politics and serve the people of Washington just as you have. Please, if there is anything you can do for a 28 year old who worked on your campaign, for someone who is being discriminated against by a system rigged to do so, please do it! </span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">If you would like to read more about this debilitating disease, please go to:</span></div>
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<span class="s2" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.cushing-help.com/">www.cushing-help.com</a></span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">or my blog:</span></div>
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<span class="s2" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://wearyzebra.blogspot.com/">http://wearyzebra.blogspot.com</a></span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Thank you.</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Love peace, blessings, and solidarity!</span></div>
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<span class="s1" style="font-family: Arial, Helvetica, sans-serif;">Sincerely yours,</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The Weary Zebra</span></div>
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The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-17844835306621559532012-10-31T22:55:00.003-07:002012-10-31T22:55:17.346-07:00Falling Apart<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://3.bp.blogspot.com/-QBXT3vvhgnw/UJIMSLsy99I/AAAAAAAAJvM/I4ORADdeAH4/s1600/crumbling+bear+for+Brandon+Ivey.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-QBXT3vvhgnw/UJIMSLsy99I/AAAAAAAAJvM/I4ORADdeAH4/s320/crumbling+bear+for+Brandon+Ivey.jpg" width="241" /></a></div>
Its Halloween today. My favoriate holiday. But, as with all my favoriate things, I can no longer enjoy them. I have been so sick the last few months, I havent had the energy to put up any of the decorations we have. Money has been so tight, that we cant afford to buy candy for the kids who didn't stop by. IN fact, beans and rice it is for our one meal today.<br />
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Im so depressed, it is getting harder and harder to get up in the morning. Not wake up, but to get out of bed. I just got out of sinus surgery on Monday. Turns out I had a fungal infection from the pituitary surgery 2 years ago. If we were still in Texas, I wouldn't have had the surgery. You have to be homeless to qualify for aid down there, and if you are homeless, you dont really count. Im still fighting disability, but they are relentless. Even DSHS (Dept of Social and Health Services) wants documents that either dont exist, or they have in their position already. But that is the deal. They grind you down. But today is the last day of my Charity Care at Swedish Medical Center. Maybe I will be able to get it again, but they said its not likely. They dont help indigent people or something.<br />
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Mrs. Zebra is cracking through the stress and depression. Im afraid she might leave me soon if something doesn't change. I guess I dont blame her. I am pretty worthless at this point. There used to be a significant section of my day devoted on figuring out what I could do for her next. Now, I cant do anything for her. I cant do anything to help our situation. Im helpless and hopeless. And alone.<br />
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The Very Weary and Depressed Zebra</div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com1Gig Harbor, WA47.385333517742573 -122.68432617187547.213662017742571 -123.000183171875 47.557005017742576 -122.368469171875tag:blogger.com,1999:blog-1285435475821987325.post-5355825318957758462012-10-12T17:15:00.001-07:002012-10-12T17:21:27.690-07:00Too tired to cary on...<div dir="ltr" style="text-align: left;" trbidi="on">
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Its been several months and my followers deserve an update. Ive been so sick and down that there hasnt been much to post.<br />
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Summer finally came and went here in Washington state. But it didnt happen without me getting fired from my job at Working America. I was $3 short of my weekly deposit quota. You can read about it <a href="http://www.change.org/petitions/working-america-stop-posing-as-a-labor-organization#" target="_blank">HERE</a>.<br />
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Ive been trying to get my job back while doing as much freelance work as I can. Mrs. Zebra is still unemployed and still battling many internal demons as well. When I do get work, I get the run around as far as what the client wants, all the settings change, etc. Why cant I just work and get paid?<br />
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We are so broke, we cant afford to go and do anything to get our minds off of things. We are eating once a day now too. Not even a big meal. We are slowly starving to death.<br />
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In September, I had my hearing for disability and it was post-poned a couple weeks because my lawyer was a hack and didn't show up. The new lawyer found that none of my docs had been helping me at all either, including those at Swedish. My hearing finally comes and the judge is conservative and dosent care that the docs have listed me as disabled, and according to SSI rules I qualify in several categories Nope. Got the report today.<br />
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So on to the next level. If I survive.<br />
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Does anyone even give a shit?</div>
The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com2tag:blogger.com,1999:blog-1285435475821987325.post-85910005562425659542012-05-29T13:34:00.001-07:002012-05-29T13:35:28.481-07:00Tumor strikes unsuspecting bystanders<div><p>So a good friend decided to come see us after many months of fellowship over the phone and online, and check out the Seattle scene. We got him situated on Saturday, then took the day to rest, as we were all exhausted. Sunday, we decided to surprise him with a trip up Mt. Rainier, as Mrs. Zebra and I could share driving. Our good friend even paid for gas! Was a great trip! </p>
<p>Yesterday, I casually took him around Downtown Seattle, and had a great time. Very tired, but so much fun. But unfortunately Mrs. Zebra stayed behind and cleaned the house for our guest. But she wore herself out. She was ready for bed, and unfortunately had a bit of a hormone explosion and misunderstood what was to be a quick stepping out as an exit for the evening and let loose. He thought it was his fault and now is considering leaving early. I fucking hate this disease. It's why we have such few friends. </p>
<br/><img src='http://lh4.ggpht.com/-ZWfyNRsz6OU/T8Uy4e8FF2I/AAAAAAAABt0/WfoGxX-l12M/Disappointed_Cartoon_by_anime1861.png' /></div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-42109147609895729742012-05-21T13:23:00.001-07:002012-05-21T13:30:55.346-07:00How sick am I?<div><p>So for the last five days, I have been home off work. The office where I work was closed Wednesday through Friday so I had to tack on two extra hours each day for 5 days before. Those extra two hours killed me. I was barely treading water. </p>
<p>To a healthy person, this wouldn't be a problem. I have a two hour commute, mostly by ferry and bus, and minimum walking. Well, maybe just over a mile, most of it down hill. But for me, it's the hardest thing I have ever had to constantly endure. Just getting to the ferry winds me, and if I don't make the first bus after work, by sprinting over half a mile in 5 minutes, the I have to sprint 5 blocks down a 50° incline to make sure I don't miss that ferry. </p>
<p>The work also wears me out. I have to repeat the same script to people, most of whom are either idiots, jerks, or don't remember who we are or that I am a human and not a robot. By the time I get home, remember two hours each way, I can barely peal myself out of the car, or string together sentences. Mrs. Zebra has had to feed me dinner before because of how exhausted I am. </p>
<p>I'm really scared of what is going to happen to us. </p>
<br/><img src='http://lh3.ggpht.com/-Cr-YVUeFMWk/T7ql9-lVRLI/AAAAAAAABq0/zLNSt0QvTdo/sick_7.png' /></div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0Seattle, Seattle47.60621 -122.33207tag:blogger.com,1999:blog-1285435475821987325.post-66367126176714704742012-05-16T17:53:00.001-07:002012-05-16T17:55:01.924-07:00Long time, no see...<div dir="ltr" style="text-align: left;" trbidi="on">
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Hey all. How have you been?<br />
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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.<br />
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The very weary zebra.<br />
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<br /></div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com0tag:blogger.com,1999:blog-1285435475821987325.post-16837235955979749212011-10-27T00:15:00.001-07:002011-10-27T00:15:15.181-07:00TOO stressed out!<div><p>Wow. It has been one hell of a day. </p>
<p>Before I continue, thanks to all of you who read this. I still get new readers all the time. To answer the latest questions, we have not moved yet. We have 39 days until our scheduled date. But we might have to push it back. And we got some solid leads for homes. So that's good. </p>
<p>Anyway, I've been super stressed lately. I have had to ween faster than I was ready, so I haven't been able to do much. I had to ween because my meds were too high last time we got unemployment. So I couldn't get my steroids. And at the time I thought I was tough enough to do it. Yea, well no. To boot, I've also been out of pain meds for the last few days. So I have tried not to move much. Just typing this is killing my thumbs. </p>
<p>Now add all that to the stress of finding a place to live in an area where rentals operate in a totally different way, and the stress of trying to deal with freaked out people when they find out you aren't full of crap and are actually moving, so they need to gain all your experience at once (notice I said experience, not knowledge because I figured it out for myself, so can they with a bit of help from me ;-)) and neighbors who's only car has been in the shop for weeks, so you are giving rides (Mrs Zebra has been having to lately because I can't drive much) and THEN, all of a sudden, the car battery won't hold an effing charge and you constantly have to go out and jump it! Lucky, we got unemployment two days early, so now we have a battery. Probably can get much food now, but at least we can drive past grocery shops and drool... </p>
<p>Sorry, we both have just had it lately, especially today. We were fighting the urge to bite each other's heads off tonight even. My sweet, sweet wife is a very mean person where she is in pain. And I know I'm no <u>ha</u>ppy camper either. 39 days until we move. And at least that long until we can get cannabis medical cards. I sure hope it's good pain relief. But at least we will be close to good docs either way. And wonderful friends who can COOK! </p>
<p><b>The Weary and deflated Zebra</b></p>
<br/><img src='http://lh5.ggpht.com/-mgpKkzMYvpo/TqkFAWZeANI/AAAAAAAAAVQ/-4zppHMPvM0/Meg%252520pot.png' /></div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com1tag:blogger.com,1999:blog-1285435475821987325.post-82507342813388460082011-09-21T15:09:00.001-07:002011-09-21T15:09:38.702-07:00Sick AND Moving<div class='posterous_autopost'><div class='p_embed p_image_embed'> <img alt="Chickenmoving2" height="389" src="http://posterous.com/getfile/files.posterous.com/thewearyzebra/Ts25xa967YJEYvxCFP9gSGL83AfgOk06VKzYGvSiZVN3qsOuC55EC5MiN8zC/chickenmoving2.jpg" width="400" /> </div> <p>Yes, we are moving. No longer do I have to take this heat! How can we afford to move, you ask? I cant tell you. Not yet. I will be able to after the move, for sure. Its a tricky predicimate. Honestly, Im hoping the lawsuit against Capture the Market goes through before December, but that is going slow. Mrs. Zebra has finally stopped getting harassed, for the time being at least, and is slowly getting her new career online. It really sucks being sick, and needing to work. In any other industrialized nation in the world, we would both have jobs and be on sick leave until better. End of story. So we are doing the closest thing we can and leaving Libertarian Texas for a more kind and gentler state- the great Soviet of Washington! LOL! Yea, not really. But still going to WA. My doc is there, and more friends family are there than speak to us here. I will miss my sister, brother, dad, and my close friend from child hood, but it will make visits that much better. <br />But, we have been trying to move for three years this October. We live surrounded by two year old boxes full of stuff we need, but have no room for. And we dont have the energy to unpack, repack, move, then unpack. Hopefully getting to WA will allow us to afford a storage unit or garage to store our heirlooms and stuff. <br />I have been in quite a low the last few weeks, but I think Im coming out of it. Mrs. Zebra is going into a low though, so its time to step up and do my share. But because of my limited energy, I cant make good on commitments I have made to others. It makes me feel horrible enough that I cant support my wife yet, let alone the feeling that I am making others upset that I am a flake. But soon, I WILL be making money. IN WA, I have a "job" of sorts that will allow me to work from home, and finance our health and eventually my first documentary. <br />Sorry for not blogging more but with the low energy, and the harassment, I just didn't feel like it. <br />The Weary and Depressed Zebra.</p> <p style="font-size: 10px;"> <a href="http://posterous.com">Posted via email</a> from <a href="http://thewearyzebra.posterous.com/sick-and-moving">The weary Zebra: Zebra Snippets</a> </p> </div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com2tag:blogger.com,1999:blog-1285435475821987325.post-44808200408807310862011-07-11T18:54:00.001-07:002011-07-11T19:41:35.530-07:001 year post op: kick me while Im down why dont you?<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/--oBm2Oq17Ms/ThumsXVLOXI/AAAAAAAAAE4/WHQV8y8Nsoc/s1600/kicked%2Bwhile%2Bdown.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: left;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><img border="0" height="237" src="http://2.bp.blogspot.com/--oBm2Oq17Ms/ThumsXVLOXI/AAAAAAAAAE4/WHQV8y8Nsoc/s320/kicked%2Bwhile%2Bdown.jpg" width="320" /></span></a></div><div style="text-align: left;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br />
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<div class="p1"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">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. </span></div><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"> <div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
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</div><div class="p3">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?<span class="s1"><br />
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</span>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 (thanks<a href="https://www.facebook.com/profile.php?id=100001222077994"><span class="s2">Adrienne Brandstetter</span></a>) 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?</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">I hope this gets sorted soon, or I dont know what will happen.</div><div class="p2"><br />
</div><div class="p4"><span class="s3">Frustrated</span> Weary Zebra</div></span></div><div style="text-align: left;"></div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com13tag:blogger.com,1999:blog-1285435475821987325.post-75600548705265617472011-03-25T11:58:00.001-07:002011-03-25T11:58:01.269-07:00Stalker from former employer<div class='posterous_autopost'><div><div class='p_embed p_image_embed'> <a href="http://posterous.com/getfile/files.posterous.com/thewearyzebra/F8QrR7ok86xmgJviWg4PJ9V8RkQCzScaADLneaBWt5ueeQ0q16tZqko8seo9/Eff_you_big_boy.jpg.scaled.1000.jpg"><img alt="Eff_you_big_boy" height="313" src="http://posterous.com/getfile/files.posterous.com/thewearyzebra/8nF2eyQ29bAwmYaapSRmQQZLBURtviI4EYD9zPoX7EUJQovY9nqTdhO0wb1t/Eff_you_big_boy.jpg.scaled.500.jpg" width="500" /></a> </div> </div><p />First, I want to thank everyone that reads this and either shares it or offers advice, or any number of positive things. It helps me cope with the aftermath and the long road to recovery I am on. Thank you all so much. But there is at least ONE person who is sitting at their computer, reading this, that has decided that they know more about me and my condition, they think I am faking or lying about my condition and have decided to threaten my wife and I. They worked with me at my former place of employment, and have taken it upon themselves to break the law and send a harassing and threatening letter to Mrs. Zebra's place of employment. I keep her, and my name for that matter, off here for just such reasons, but there is only a three people at my former work place that I have told exactly where she works. And one of them actually had her husband look into getting a job there. So Im pretty sure who this was. So this post is for that person.<p /><div>You know nothing. You have no clue what happened the day I was told to come back to work from <b>F</b>amily <b>M</b>edical <b>L</b>eave (<b>A</b>ct) and you have no idea what myself, and my wife, and my family have been going through. And instead of coming to me, and asking me what happened you decide to break the law and send a threatening and harassing letter to my wife, who is having a hard enough time coping with what happened in January. If you want to grow a pair and actually have an adult discussion about it, then why dont you come to me and ask? Well, now you can't because that would ensure your guilt in sending the letter, but your finger prints will probably be enough anyway <span style="">(M.S. § 609.749, Subd. I) </span> But Ill let you off the hook just to educate you. But you have to come to me. Until then, the above photo tells you all you need to know.</div><p /><div>The Weary and Angry Zebra</div> <p style="font-size: 10px;"> <a href="http://posterous.com">Posted via email</a> from <a href="http://thewearyzebra.posterous.com/stalker-from-former-employer">The weary Zebra: Zebra Snippets</a> </p> </div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com6tag:blogger.com,1999:blog-1285435475821987325.post-58588128597194037562011-03-23T13:24:00.001-07:002011-03-23T13:24:47.656-07:00Waiting<div class='posterous_autopost'><div class='p_embed p_image_embed'> <img alt="Waiting" height="269" src="http://posterous.com/getfile/files.posterous.com/thewearyzebra/XkCfL7kpOwX5h6LBMx934B81pJgAoSSfeLFe9QsjuhZRAFA94UZRuQwSf7Qc/waiting.jpg" width="337" /> </div> <p>I know I havent done an entry in a while. Mostly because not much has changed. <br />I had sinus surgery almost two months ago and while I am breathing a bit better, Im still not out of the woods as they say. Its not healing properly, probably due to the extra cortisol Im still producing. At least, I think I am producing. I am having cushing's symptoms still, and they are getting worse. I am waiting on a medfusion from Ludlum but they are supposed to call me. That will prompt a 8am blood test to see weather or not I need a full work up or not. And my insurance runs out after april. If I want, I can pay the full $600/mo but thats one unemployment check. So unless something happens soon, Im screwed. Im still waiting on growth hormone from Dr. Ludlum and honestly I dont know what to do at this point. <br />The last few weeks, I have been so depressed. I cant find work, I cant get my hormones fixed, and now Im about to not have insurance anymore. I just hope something happens soon to fix this. <p /> The Weary, and worried, Zebra</p> <p style="font-size: 10px;"> <a href="http://posterous.com">Posted via email</a> from <a href="http://thewearyzebra.posterous.com/waiting">The weary Zebra: Zebra Snippets</a> </p> </div>The Weary Zebrahttp://www.blogger.com/profile/03773530801107317584noreply@blogger.com2