Really? I mean REALLY?

I dont get it.

I have enough on my plate to warrant the average person to wish to commit suicide. I do. Not the average person in any particular social or economic spectrum, just in general. Lets see, just a short list: I live with a brain tumor that causes me to go for days without sleeping, bouts of rage and fatigue, hormone deficiencies, nutrient deficiencies, constant pain, I cant work and because of it I face homelessness for my wife and I, I have little access to medical facilities, the only way we get food is threatened to be cut with the politics in D.C., what little I DO for money actually aggravates the disease, I spend 1/5 of my income just getting to and from the only job I can find, my living family has all but abandoned me, my wife's family all hates me, most of my friends are also sick and most are online, my wife is sick and out of work and I cant provide for her, and my life span is pretty much set in stone for me. I think I covered everything, but Im sure there is more.

The point is, there is A LOT I can point to and say "That's why I DESERVE to end it. I want the pain to end!" But so far, I have failed in that, thanks to many of you meddling people reading this. What KILLS me, no pun intended, is when people have WAY LESS to deal with, and are just having a rough day or week. Or maybe they had a fight with their significant other and are picking up the pieces. You see, Ive had that. And I had ALL OF THE ABOVE to deal with at the same time.

I know everyone's struggle is different, and maybe that rough patch IS the hardest part of their life to date. I don't know. What I do know, is that Ive had to deal with it, AND all of the above. And if I haven't, at least you dont have ALL OF THE ABOVE to deal with too. Quit bitching. Yes, its hard. Yes, its easier to give up. Yet, I do not. I find a reason to get up out of bed each day, even when it literally is the hardest part of my day. Even when I literally have to be carried out of bed, I make it. When when I have to be spoon fed, and its happened, or have had to be changed out of sheets I have urinated in, I push. And it pisses me off, again no pun intended, to see people who could carry half of MY burden and still be ok, bitch and moan and tell me they contemplate suicide. I understand depression, as it is a daily struggle with me and my wife, and most people I know. And it clouds the mind. I have to keep reminding myself that while I deserve for the pain to end, those around me dont deserve to hurt on my account. And the only thing worse to me than my life is hurting those I care about.

If you know me, you probably struggle. But any time you feel like you want end your life, read this. Or call me. Or text me. Ask me how my day was. Tell me you really want to know. If I cant make you feel better, at least I can make you thankful you arent in my shoes. And there are people who struggle just like me, sometimes even worse than me. This letter isnt for you. You know what Im talking about.

And Im not comparing who is suffering more. Im just tired of people telling me how they are going to kill themselves, how their life is so bad, and about so little, especially when you know people like me. Venting is one thing, but I feel like when people tell me this that they are again judging me and people like me. I dont kill myself, so they dont have much to stand on.

The Weary and very Annoyed Zebra

And thanks for letting me rant. Things have been rough, and we are in danger of getting evicted again. We have some irons in the fire, but nothing is for certain  If you could help us get through the next few months, we would really appreciate it. We are trying to raise $3000, which is 3 months rent. Thanks to all who have donated, and I ask only that you share the page with people you know, and we appreciate any donations.

Click here to Donate to our Rent fund.

In gratitude,
A Humble Zebra

Post Op Day 9

The last nine days have been like nothing I have ever been through in my life.

I must first apologize for being so late on my update. I have been relying on Mrs. Zebra to update friends and family but she has been exhausted the last few days as have I. Spending more than 20 minutes looking at a computer monitor makes me physically ill. This is problematic since my only link to the outside world is social networks like Facebook, Twitter, and the Cushing's Support site.

On Tuesday, July 13th, 2010 my life changed forever. At least I believe that it did. I had 70% of my pituitary gland taken out to ensure the remaining 30% was tumor free. The surgeon, Dr. Marc Mayberg, believes beyond a shadow of a doubt, that he took all of the tumor out. The part that worries me, and to a smaller extent the doctors, is that my cortisol numbers DID drop below 2.0, but did not stay there. I have not had my levels checked since I was discharged that Friday, but it feels like I did crash and stay low since then. Let me tell you, the surgery is touted to be a simple one from a neurosurgeon's standpoint but is nothing short of hell. I woke up to crushing pain from my head, and the Diabetes Insipidus was already flushing my body of liquids. Every part of my body was heavy and ached. Every sound was like an ice pick into my skull as was every beam of light. Blood freely flowed from my nose as did Cerebrospinal Fluid. Thankfully the two CSF leaks I had quickly healed themselves. Then came more blood. During surgery, blood drained into my stomach. It came back up. Mrs. Zebra said walking into my room was like walking into a horror film. I was screaming for help because I had to use the restroom and I was bleed everywhere. All of this masked the pain from my abdomen for days, where they took fat to plug my pitutary cavity. This surgery is something that, unless completely necessary, I do not ever want to go through again. It was as if all the years of suffering were boiled down and injected into my head at once.

This is but about 1/3 of what came up. They dumped the other two before Mrs. Zebra took this.

The light and sound sensitivity were present right up through my discharge, but one other side effect that was not explained to me still lingers. I can not smell or taste anything but sweet and sour. Spice is an acid so its effects are felt, as well as the effects of salt, but nothing else. This makes every meal very depressing. 

Each and every morning is hard to get up, worse than my "crashes" before and now that I have started steeping down on my medicine I shiver under my covers from being cold. For the first time in my life, the air conditioning at night is too cold for me. I am not complaining, mind you, just amazed. Between my lows in the morning, my aches and pains all day, and my cold at night, at least for the moment I think my Cushing's is finally behind me. 

I take steroids to help me function through the day. Dr. Ludlum gives high doses of Cortef to start, 30mg three times a day. Enough to give me back my Cushing's if stayed on too long. So he instructs to ween by 10mg every 4 to 7 days. I started my first ween Tuesday, day 7 after surgery and 4 days after I started surgery, so I did. I felt it for sure that night. I slept much better than I ever have. Last night, the only thing that woke me up was the nausea that ripped through my body. Not enough to make me throw up, but close. Each day I am vigilant in looking for signs if Adrenal Insufficiency. What worries me is that I truly dont know what A.I. is like because I dont know if I truly every felt it. What is A.I. and what is nausea from drainage from the never ending head cold I have now?

Besides the drainage, and the nausea, the fatigue is more than I could have anticipated. Even on the high doses of steroids, just getting up to use the restroom that is 25ft MAX away from my spot on the couch is enough to make me feel weak and tired. Milk jugs, water pitchers, even my Macbook Pro are way to heavy to carry further than a few feet. This makes dealing with every day events hard. Especially the fact that my Diabetes Insipidus is just barely under control. 

My days since arriving back home have consisted of resting and letting Mrs. Zebra's Father help with cooking, cleaning, and the like. He has been a huge help and when he leaves he will be missed more than he realizes. He is giving both myself and Mrs. Zebra a much needed break. For now, I focus on healing and fixing the vast sums of medical bills that come in. $100K just for testing is a bit much, but it is getting take care of. Mrs. Zebra is next. Hopefully she can either get on the new state insurance plan paid for by the new federal law or we will have to do something drastic. She is showing more and more symptoms of this dreaded disease every day. It is a horrible disease, and an almost as equally horrible ordeal for remission. I wish this only on those who refute it's existence or refuse to understand what living this way is like. It is nothing to wish for. My net time is about up for now. Time for a nap.

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

D-Day, Zero Hour

Well, the day is finally here. The day I will start my new life. I do not know a life without Cushing's so its a bit intimidating. But I know it is for the best. Im so hungry, and I have sinus drainage so my stomach is not good this morning. I didn't sleep well, tossing and turning, but I did sleep. I woke up sore, but to a smiling round face wishing me a good morning! Im excited and very positive, even with the good/bad news from yesterday. 

I got to see my MRI yesterday and it looks like it is larger than the scan original said. It is 3.5mm thick. But it looks like 6-7mm long, nearly half of my 13.5mm Pituitary. And it is close to my artery. Its GOOD that he can see it, but that large and that close to the artery, well he has his work cut out for him. I dont know when my next blog will be, so keep up with the Caring Bride site for Mrs. Zebra's updates. I love you all. Time to shower and get ready...

"And I think it’s gonna be a long long time

Till touch down brings me round again to find
I’m not the man they think I am at home
Oh no no no I’m a rocket man
Rocket man burning out his fuse up here alone"

The Weary Zebra

See and download the full gallery on posterous

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Afraid

Today I am 17 Days out from surgery. Im beginning to have some 2nd and even 3rd thoughts about it. This is battling with the rational thought that I NEED this surgery. I just thought I would get some of these out.
Im afraid I might not make it through surgery.

Im afraid my personality might change drastically.

Im afraid they wont get it all, and it will have been for nothing.

Im afraid I will get a Cerebrospinal Fluid Leak.

Im afraid of how I will feel afterwards.

Im afraid I will be an invalid.

Im afraid I will make Mrs. Zebra too jealous of my being able to stay home while she works.

Im afraid they wont find ANY tumor at all.

Im afraid we will go bankrupt because of my illness.

Im afraid Mrs. Zebra will leave me for a healthier man.

Im afraid my work will let me go because of my illness.

Im afraid of being hospitalized (though its been on my list of things to experience in this life)

Im afraid my family will become even more distant than they already are.

Im afraid of being more lonely than I am now.

Im afraid adrenal insufficiency.
Im afraid of giving myself injections.

Im afraid of weening.

Im afraid of being alone.

Im afraid I will be a burden on my father-in-law.

Im afraid no one will visit me, as is common with Cushing's.

Im afraid my pituitary will never turn back on.

Im afraid my adrenals wont ever work right again.

Im afraid I wont know what to do with myself when I AM better.

Im afraid of my life being so different afterwards.

Im afraid nothing will happen.

Im afraid the surgeon will sneeze during surgery.

Im afraid an earthquake will strike during surgery.

Im afraid of an electrical outage during surgery.

Im afraid I wont be thought of.

Im afraid.

Posted via email from The weary Zebra: Zebra Snippets

Another Rare Day

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

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

The Weary Zebra

See and download the full gallery on posterous

Posted via email from The weary Zebra: Zebra Snippets

Loosing More Hair

The misses found this last night, because she loves gazing starry eyed into my eyes, that I am loosing more hair. This time, it is my eyebrows.
My hair is patchy, so now I wear a hat. And she started loosing her eyebrows a few years back. Thats she she started her PCOS symptoms that no treatment is helping (hmmm, wonder why?) and the doc then said it was her thyroid which no meds are touching either. So at this rate, I will be completely hairless by the time I am 30.
Thanks Cushing's. I didnt need any self confidence...

Brandon Ivey
Post Production
Capture the Market
214.905.4331 ext.2719
brandon.ivey@capturethemarket.com

Posted via email from The weary Zebra: Zebra Snippets

The Zebra Wife has something to say!

Here is the misses and her comment on Camp Cushie. Enjoy!

The Weary Zebra

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Cushie Camp Day 5

Here is the conclusion of my trip to Dr. Ludlum's Camp Cushie. I do have one more video from that week to post in relation to Cushing's, but I will have to do that tonight/tomorrow. For now, here is Day 5. S

The Weary Zebra

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Zebra Snippet 6: Alone

I think its #6 anyway. Im not looking right now. Probably have 10 #6s up there right now. It shows how stupid I can be. This is what I wanted to talk about. The depression. I think I mentioned it in an earlier one, and if so don't bother reading this one. A reader told me on twitter that I have inspired her to blog. Well, Im glad it helped someone. I try. Sometimes I dont think I make any sense, or make any difference. I feel so alone sometimes. Like right now. My cortisol is high, I know that, but my hormones are crazy and I feel so down. Like I am alone in the world. Like the people online are so far removed, and my family doesnt understand or is avoiding me because of my illness. I just want to die when I get this feeling. And the only thing that gets me through the day is the knowledge that its hormonal. Its hard to remember with any kind of rational thought that all the feelings are wrong. That people do care about you. That your skin will stop crawling, that the cat that you see isn't really there, that the nightmares will one day stop. Its hard.
This is to anyone that finds my blogs helpful in any way: Make a comment if you can. A little feedback goes a long way. 21 days until I go to Dr. Ludlum's Cushie Camp. I just want the elephant off my chest and to feel human again.

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

Cushings and Hair Loss

Just thought I would share what Cushing's can do to your hair. No, not make it blue, but the blue dye shows how blotchy the hair loss is. It isnt typical male pattern baldness. That, and the fact that this is age 25, and it started when I was 13, shows this isnt typical. You can see more on my photo page.

The Weary Zebra

Wanna know what Cushing's Affects?

Watching the Health Insurance Reform pass, I was reading Moxie Molly's Blog and saw this picture. I think it says it all. There isnt much this disease doesn't affect. It looks like another long night...

Zebra Snippet 3: Brain Fog

I can barely think today. I cant remember what was going on 10 min ago, and I need to. My ADHD meds are not helping today at all. I need to sleep. I cant think straight, It's hard to put together sentences for this post. I was very high on cortisol last night, and I think today, I am paying for it. Really hard to think, and I don't wanna. Well, I do, but its really hard. I can't brain today, I have teh dumb.

The Weary Zebra

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Zebra Snippet #2: Cushie Meter?

Again, if you have a better idea what to call these short updates, let me know.

I had a bad attack last night, and another one this morning, though not as bad. If you read my other blog, the one on blogger (this is reposted to that one too) you will know of my "purple rage". As I learn more about this disease, I have noticed three things that happen when I get panicky/mad/frustrated/high: 1) my face flushes nearly every time, 2) my stripes turn red/purple, and 3) so do the "dots" on my arms and back. I have a built in cortisol or "Cushie" meter. Its weird to those who don't know me, and to those who have known me for a while, its just an explanation. So when I start to feel the rush of hormones, I just check my "meter" like most check their watch. Because I don't wear a watch. I sweat too much. Wow, that was a bit random. Happy Monday.

The Weary Zebra

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Purple Rage

...You Wouldn't Like When I'm Angry."

 Well, I dropped off my 24hr UFC this morning, asured that both tests would be done: Cortisol and 17OHC. I was praying all day while trying to stay awake that the numbers would come in high and I would get a diagnosis. I didn't think they would be in so soon...

I got and email that they were in so I logged into the hospital's site and low and behold there it was. I read over the numbers at about 6pm and quickly posted them online for other Cushie's to desypher. About 7pm, someone comments that it is missing a crutial hormone: Cortisol. The make-it or break-it cause of my own personal hell. So I quickly logged back in on my phone while going to the movie ticket counter and I had missed that the test was for THE WRONG HORMONE! I quikly shot the endocrenologist an email and went into the theater to enjoy the flik.

Two hours later, I am ticked.

My pulse is high, I am agatated. I didnt enjoy the last 30 min of the movie and dont feel like myself. I usually annalize the heck out of most films, but had forgotten all about it with this change of emotions. I went into the restroom and quickly appoligized for my comments online about how the doctor Freaking cheated me. But thats how I felt. I felt so cheated. I quickly walked out of the restroom and I wanted to throttle the next person I came to, I was so ticked! And I had vissions of kicking the crap out of several people around me and.....I stopped. I thought, this isnt right. So I went back into the restroom and since no one was in there, I lifted my shirt...

Purple

Purple dots

Purple Stripes

PURPLE RAGE!

The color of my dots and marks told me everything I needed to know. And I looked at my phone and saw it was after 9pm. Im getting high. High on cortisol. The hormone that @#$%^&*! doctor didn't order a test for! WTH!? Ooohhh, he should be SO #$%^&* glad he wasn't there....

Needless to say, it was an intesting drive to Chili's after that. Tunnel vission down the freeway. I was aggated, focused but oblivious to anything else. My frustration at why I was frustrated (cortisol) and how stupid it was, made me MORE frustrated! I felt like I was an aderline junkie (technically I am, causes the pains apperently, when I dont have it) and I was getting my fix! But, not in a good way. I want to sleep, but cant. So, purple rage continues. Thankfully, my doting wife understands and knows Im not mad at her. Im just mad. And agated. And its not my fault. Or the doctor's fault WHO DIDN'T ORDER THE F$%^&* TESTS I ASKED FOR! No, its the cortisol. So I "rest" in solice knowing what the heck is wrong with me.

At least, one thing.... can't fix crazy...