The Weary Zebra- Cushing's Patient w/o Insurance

TOO stressed out!

2011-10-27T02:15:00.001-05:00

Wow. It has been one hell of a day.

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.

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.

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...

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 happy 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!

The Weary and deflated Zebra

Sick AND Moving

2011-09-21T17:09:00.001-05:00

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.
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.
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.
Sorry for not blogging more but with the low energy, and the harassment, I just didn't feel like it.
The Weary and Depressed Zebra.

Posted via email from The weary Zebra: Zebra Snippets

1 year post op: kick me while Im down why dont you?

2011-07-11T20:54:00.001-05:00

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.

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.

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.

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?

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 (thanksAdrienne Brandstetter) 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?

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.

I hope this gets sorted soon, or I dont know what will happen.

Frustrated Weary Zebra

Stalker from former employer

2011-03-25T13:58:00.001-05:00

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.

You know nothing. You have no clue what happened the day I was told to come back to work from Family Medical Leave (Act) 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 (M.S. § 609.749, Subd. I) 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.

The Weary and Angry Zebra

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Waiting

2011-03-23T15:24:00.001-05:00

I know I havent done an entry in a while. Mostly because not much has changed.
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.
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.

The Weary, and worried, Zebra

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Sinus Surgery

2011-02-06T10:39:00.001-06:00

Today is day three of post op sinus surgery. I had surgery on Thursday, and it ie yet another one I really would rather not to again, but might have to anyway.

Apparently, the swelling was so bad, the ENT could not finish after four hours and gave up. He did fix my septum, and I have the splints to prove it. And he packed me full of foam for some reason. He didn't tell me anything about what he did, and told Mrs. Zebra very little.

This is so much worse than the pitutary surgey for the simple fact that at least with that surgery, I was kept as comfortable as possible. This time, they gave me low strength vicodin and said tough it out. I hate the doctors here, and I really get the feeling they don't like me at UT SW. They have on my file not to give me oxycotton or dilaudid, even after the latter was explained. Why no oxycotton? Got me.

The Weary Zebra

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Laid Off

2011-01-17T09:36:00.002-06:00

Due to medical, or the economy, or whatever, I was let go today. It was supposed to be my first day back and although I wasnt ready to go back to work physically, I was a little excited to get back in the editor's booth.This is has been such a hard year, I really hope and pray this is the last major obstacle we have to deal with. Im not sure either of us can take much more.
I have some options in both regarding this position, and others. But I am forcing myself to take one thing at a time. It is so hard dealing with this when you are so sick. I dont know how people do it. I really dont.

The Weary (jobless) Zebra

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A rock and a hard place

2011-01-15T21:09:00.002-06:00

Well, its been a rough road. Its been a while since I did an update so here goes.

First: after the six months post op, I am not completely better. In many ways, I am worse. But the docs told me to expect much of this and I was a bit to optimistic when I began this journey. We still do not know conclusively if I still have Cushing's. The MRI that was taken last week doesn't show any tumor left, but I still show many cushing's symptoms. We cant test to see if I still have it because I have a massive sinus infection since surgery and the last few months I have had to take massive amounts of steroids to just keep it at bay. Those would throw off any testing on my adrenals.

My pituitary still isn't working. I am low on several hormones, including testosterone and growth hormone. Because of this, I hurt all over and many of my systems are not working correctly, including my immune system.
And because of my sinus infection, I am due into surgery in the next few weeks. Thankfully it is local, at UT Southwest. But these guys dont like me much. Hopefully they will now, since I am going under THEIR knife. Its supposed to be as bad as my immediate post op from pituitary surgery. Fun stuff. Just found out today!

So hopefully none of this will affect me trying to get back to work. I miss cutting video and making graphics! I need to stay off of work, but waiting on disability will break us. We cant afford to wait years. Maybe I can find a loophole in the mean time.

More to come as it happens!

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Latest in my fight...

2010-12-06T18:16:00.002-06:00

I know I haven't updated in a long time so I thought I would. There hasn't been much to update honestly. I still feel like junk, but its slowly getting better. I still have no Growth Hormone, and my sinus infection is as bad as ever. I finally got a perception for nebulised antibiotics but I cant find a place that will work with my small insurance company named Blue Cross/Blue Shield.
My motion sickness that was going away, has come back and the steroids Im on now for the infection make me SICK AS HECK!
The good news? Well, the swelling has REALLY gone down. I have dropped several pants sizes, which is nice. Now I just need to quit sweating when its 20˚F outside!

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2.5 mo post op: ugh...

2010-10-25T23:25:00.001-05:00

Sorry I have not posted in a while. I've been extremely depressed for weeks now. The lack of growth hormone and testosterone has really done a number on me. I still have no function in my pitutary, at least as far as we can tell. But I am having spikes of cortisol that I can feel, and it sends me into a panic rage. This is consistent with the post op cortisol numbers that never stayed below 1. This means I am still not producing growth hormone, which would give me energy and motivation, as well as help with the aching and stiff mussels, and not making testosterone either, which would help my motivation and depression too. I am taking HCG to make me produce testosterone, but I only see small improvements, none effecting my mental state. This is also week 5 of the third sinus infection I have had since surgery. I'm on my 2nd round of antibiotics and nothing is helping. I'm scared to go to the ENT because last time they sent me to UTSW and they hate me there, prompting them to send me out the door and not filing correctly with insurance and charging me with the full bill. I'm still fighting it.I'm tired of being told I should be better, that I need to fake it, that I just need to get over it. No, I feel miserable, I feel like a giant green blob is inside my nose and lungs, I have not tasted or smelled a damn thing over a month, I can't sleep, and I refuse to take peoples crap anymore. Either there is a tumor somewhere, or my pitutary is freaking out and trying to wake up in spasms. That's what I'm hoping for anyway. I never want another pitutary surgery again...

via sendy

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Dejected

2010-09-17T15:18:00.002-05:00

What a day.

I went to my 2 month check up on Monday. I had two doc appointments and a battery of blood tests. I got the results yesterday. Most of the results I was ready for. I am extremely low in all my hormones: Testosterone, prolactin, Growth Hormone. I was prepared for that. These things are fixable. Or at least I thought they were. What I was surprised at is my cortisol is still higher than it needs to be. They want to retest, but cant until I am completely weened off the steroids. That should happen within a few weeks. They warned me I was an oddball case. Im not worrying over the cortisol as much. Im worried about the other hormones right now.

Without Testosterone, I dont have the energy or motivation I need, and the lack of it kills my bones. The GH will also make me feel better and help my mussels rebuild. I cant have the GH yet because my sugar was high the day of the test. I had been out of my meds for a few days and coupled with stress, didn't help my sugar. So they want proof it is ok. Plus, if I DO have a tumor still, or even just tumor cells, the GH will make them grow faster.

I was going to get the Testosterone perception, but that might kill my chances to have children. The docs suggested I see a reproductive specialist to get other hormones that can boost my testosterone. The problem with this is that out of all the reproductive doctors I have talked to, most do not deal with men, and the rest just tell me to go back to my endo. I HATE doctors here!

So Im stuck. I dont know what to do. I was hoping I would stain deficient because I could get meds that way, but I cant get any meds. I am beginning to think surgery was a bad idea.

The Weary, Dejected, Zebra

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7 weeks post op

2010-09-07T14:05:00.002-05:00

Well, its been a while since I posted a blog so I thought I would. I have weaned from 90mg, or 30x3 day to 20mg x1 a day. I feel deflated by 2pm, which is 6 hrs after my dose. I have no strength or energy to do anything. I hurt constantly, but except for needing help up and down and showering, I seem to be taking the weens better now. I found out last week that I can't drive without a high dose in me yet, and I still have nights I can't sleep.

But at least my appointment with Dr. Ludlum is a week away. I hope he hooks me up with some hormones. I have not regained any sexual urge since before surgery. And other Cushies tell me my growth hormone is probably low now too. But hopefully we will find out soon.

I'm getting stir crazy so as the weather starts to cool in the morning (we wake up in the low 80s now) I have been trying to get the mail and will be trying to go for a "swim" in the pool, which is really just laying on a float or wading in the water until I exhaust myself.

Keep us in your thoughts. It's time to lay down.

The Weary Zebra

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5 Weeks Post Op

2010-08-18T09:28:00.002-05:00

Well, it's 5 weeks after surgery. I got a call from my doc on Friday when I sent them an email about my last ween. The last ween I did, the morning after I was not functional at all. Mrs. Zebra and her father nearly dragged me to the living room to take my meds and eat. I honestly woke up an hour later, not knowing how I got there, in a great deal of pain. I sent my nurse practitioner an email about it.

My doc called and I explained it wasn't getting any better over the weens and that the NP kept pushing me. He told me I messed up a ween (not bad, just mis read it) and to go back one week. So I ended up actually going back 2 because I messed up on one. But Friday, I'm scheduled to ween again. Almost the same one: no evening dose.

I think I still might have a small CSF leak, but it comes and goes. It didn't help either that I was battling an upper respratory infection. This whole this is still a huge struggle. I know almost for certain my pit is not awake yet. No libido at all, and I think my Growth Hormone is low. I won't get that checked until September. I just hope AFLAC pays soon so we can get plane tickets.

My taste isn't 100% back, but much better. Smell too, sometimes I wish my smell was still gone! My lengthy visits to the rest room are not fun at all! Try being so constipated that you have to push hard CAREFULLY, then right after the plug is loosed, having the runs so bad, a Bantha would run from the smell. Sorry. Just a fact of life for me now. And so weak still. And people stil want me to do this and that. And in 110° heat! No way! I can't wait to explore life after cushing's.
Mrs. Zebra is scared though. Mostly, because she is afraid we won't be able to have kids now. I just tell her that we will cross that bridge when it come and if worst comes to worst, there are so many kids out there that need moms and dads. God may have some picked out for us. It's hard dealing with my own hormonal and emotional issues, but to have to deal with both of ours is harder. Then again, she has had to do the same. Neither one of us stands straght up, we lean on each other. And it if it were not for her, and all of you readers, I could not have made it this far. Now, its nap time!

The Weary Zebra

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3 weeks post op

2010-08-03T12:53:00.002-05:00

Im sorry I have not posted in a while. I have been so tired and sick lately I just have not had the energy.

Mrs. Zebra and Dad-in-Law really pushed me the first few weeks to get out and do more and well intended as they were, I think I way over did it. I ended up in the hospital last week for a CSF (Cerebrospinal Fluid ) leak. I started dripping in a restaurant and that evening I was being transported from UT Southwestern ER to their Neuro ICU. Thats where I met the real reason I went to Swedish and Dr Ludlum/Mayberg instead of here. Once they found out I traveled to Seattle for my surgery, the docs became hostile and wanted to change up all my meds, and got really mad when I asked them to talk to the doctors whom care for me currently! I couldn't get the drip to reproduce but my drainage got worse. All the while, I am weening off my hydrocortisone which is the only thing standing between me and another trip to the ER. In fact, every morning between 2am and my 8am dose, I get to experience Adrenal Insufficiency. They dont worry because Im sleeping and its for a short time. And using this, its supposed to jump start my pituitary and so far it hasn't worked.

So, friends, family, etc. I really cant go anywhere anymore. I had brain surgery. I look fine, but in the past week, I had a CSF leak and started bleeding internally again. I did way too much. Im sorry. I dont mean to disappoint you guys but my daily workout has been going to the bathroom in time to make it. If I have to, Ill start wearing bandages around my head. But feel free to come over and visit. Lord knows Im up for that! The apt is clean and you can move around it! And we do need some help with stuff. And just to come over and hang would be cool. But Mrs. Zebra canceled her old plans for my birthday this week and so far the plan is just for you guys to come over and hang out. She will have more details tonight. Thanks for understanding. If it helps, pretend I have cancer!

I ween again tomorrow. The last one was scary, this one is even scarier. Keep me in your thoughts. For now, Im off for a nap. Doc appointment wore me out. Thanks Mike! You really came through!

The (very) Weary Zebra

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Post Op Day 9

2010-07-22T13:11:00.002-05:00

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

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D-Day, Zero Hour

2010-07-13T10:54:00.002-05:00

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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Testing and Loneliness

2010-07-09T00:31:00.001-05:00

Well, yesterday I completed the first part of my tests while here. It I had what is called an Octreoscan. On Monday, I started laxatives and Tuesday I was injected with radioactive isotopes. Then Tuesday I had a full body scan. But my abdomen wasn't coming out good, so I was told to drink an entire bottle of Magnesium citrate. I usually have daily diarrhea because of the cortisol, or rather the lack there of, but when I come here it stops. SOOOO I went to down town and looks at kilts and over did it and that night I tried to down the entire 10 oz bottle. Last time I had to take this, I was trying to get into the Navy. I had to do it twice. I literally spent the night both times on the toilet. I couldn't get the entire bottle down this time, but the half I did get down did the job and then some. I couldn't eat meat still, and the ramen was not sitting well on the laxative all day. On top of that, I has crashed so EVERYTHING hurt. All my family was busy I guess, even Mr. Zebra didn't want to talk to me yesterday. For two days in fact. So I was felling very alone. Then during my 2nd scan, I had to hold my hands above my head for almost 2 hours. It was not a good day. I felt like I could sleep all day.
Today, was much better. A cushie from Ireland Skyped me and helped cheer me up early this morning while I was still up (2am local time). Had a cushie friend in the area come down and hang out with me. She was great (very high, like I was) and her daughter was a riot! Mrs. Zebra talked to her on the phone and wants to clone her! I took bunches of pictures and we both had a blast on the ferry! Thank you so much!
4 days left before surgery, and tomorrow Mrs. Zebra comes up from Texas! I miss her so much!

Oh, and the photo? Thats me. Im glowing. All the white specks are radioactive particles! Im super geek now! I can... well.. glow. Thats about it. And whine.

The Weary Zebra

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Fireworks

2010-07-05T08:53:00.002-05:00

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

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

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

Posted via email from The weary Zebra: Zebra Snippets

Set In Stone

2010-06-30T08:44:00.002-05:00

Yes, steal is a mineral and minerals are considered stones. My blog, I win.
I got the tag for my bracelet in about two weeks ago, but the bracelet I had wouldn't work so I had to order a new one. It came in yesterday. So I re-sized it (thanks Mom!) and put it together. I decided to start wearing it just to get used to it. I didn't want it bugging me while weaning. But as I put it together, the road ahead seems more solidified. It also seems long and arduous, but at least it is more clear than it was before. I have much more to go, but the crest looks to be neigh. IN 13 days, I will have my pituitary gland sliced, minced, prodded, poked at, sucked and snipped. I am ready. Lets DO EHT!

I just hope while up there, my marbles don't come out. I need those.

And Yes, my name is on my tag. Photoshop took care of that.

The Weary Zebra

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Courage

2010-06-27T20:25:00.003-05:00

A good friend of mine and I talked over Facebook yesterday and she suggested I make a list of things I hope will happen in my life. Ive had this disease my entire life and dont know what "life" is really like with out Cushing's. But I KNOW I need this surgery so I can have some sort of chance at a "normal" life.
But this morning, I went to church.

My body said no. My body needed rest. It did not want to get out in the heat. It did not want to walk or climb stares. But I knew that I would not be able to go after surgery for quite some time. The congregation prayed over me and people actually care, even though they have no idea what is wrong. But what surprised me was that a woman stopped me on our way out. Her daughter was told she has a pituitary tumor, has nearly ALL the Cushing's symptoms, and has an endocrinologist that is messing with her. So I told her about Dr. Ludlum and his Cushie Camp and that her daughter needs to get there ASAP! I will be emailing her the info shortly.
Me having this disease has brought, including this woman, 4 people to Dr. Ludlum and closer to getting their lives back. If that is His will, so be it. I will be an ambassador of hope. And Courage. If I can do that, if I can bring others to doctors or at least to knowledge that they have a chance at getting cured, at a normal live, it makes it all worth it.
I hope...

to have children

to direct major motion pictures as well as inde films

to travel the world

to visit all my new, Cushie friends

to work and march for a better future with my comrades

to take Mrs. Zebra out dancing

to get Mrs. Zebra "cured"

to cook huge meals

to mow my own lawn

to have the energy to mod my own car

to feel like my own age

to not be winded by walking from my car to a building

to move to a cooler climate

to be happy

I love the quote in the picture above. There ARE more important things than my fear.
The Weary Zebra

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Afraid

2010-06-26T22:44:00.002-05:00

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.

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Hallucinations

2010-06-21T10:46:00.002-05:00

I've talked to a few people about this and may have even touched on this before. From the people I have talked to, and the research I have done, the weird things I have seen all my life a most likely due to my high levels of cortisol. I remember growing up, and at night I would have these vivid nightmares. I still do. Thing was, and is, that I wasn't sleeping when some occurred. I remember being in 4th grade and sitting in the living room at 2am, because it was the coolest room in the house, rocking because I was having a cortisol attack, and I wasn't alone. There were people in the room behind and to my sides. Just starring at me. So I starred at the TV, watching Cartoon Network's old reruns, until my chest stopped hurting and I got sleepy again, usually around 4am.
I still have them now.
The last 5 years, we have had a black cat live with us. He has piercing eyes that shine at night. HE doesn't like to come near me. Usually stays a few feet away. Doesn't eat much. And has followed me to work a few times. When he followed me to work, it was concrete to me that the was not real. He would walk by the door to my office, and repeat the same pass over and over without regard to anyone there.
Last week, when Mrs. Zebra and I went to bed, the room changed paint, and all the furniture was rearranged all of a sudden. Nothing made sense. It scared me. Or my wife's shirt will change colors from when I look at her one minute to the next.
22 days and this bugger gets cut out!

The Weary Zebra

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Communication Disconnect

2010-06-17T11:34:00.002-05:00

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

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

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

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

The Weary Zebra and Friends

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Pick Your Poison

2010-06-12T13:27:00.002-05:00

A good friend that reads this blog was talking to be about how Cushing's effects our sleeping patterns. And she said that "it feels like I am getting shots of Nyquill and expresso at the most inappropriate times," I thought that was one of the most brilliant explanations I have ever heard! The only thing was that I would have said energy drink instead of coffee because I hate coffee and dont know what it really does to the body, but tomato, tomaato.
Let me explain a typical Cushie day for me, in the light of energy levels. I have to get up earlier than most people would, because it takes me longer to get up and dressed. Truth be told, it would be MUCH earlier than that if I didnt have help. It is embarrassing to say, but Mrs. Zebra helps me every morning by picking out my clothes from the closet and drawers, putting together my shorts with belt and such, and helping me up so I can put them on. She also feeds the bunny and cat and fixes breakfast all because I feel like I just took a shot of Nyquil. At least a shot. And I usually feel like this all day, with aches and pains, and the crushing tiredness like I want to fall asleep. Even while driving. In fact, imagine driving a bus full of kids feeling like this. I did, for 4 years and a full time student. HELL.

Sometimes I will get my expresso feeling around 3-4pm (1500-1600), but usually happens around 8pm (2000). I feel so much better! I have all this energy! My aches and pains start to fade away! So time to do something constructive, right? Not a chance. I cant focus. I had too much "coffee". Now all I can do is shake and rock and try to tire myself out because I need to go to sleep soon! Then my chest starts to hurt, and every vein in my body feels like its going to burst. And my head starts to hurt. Then, as it gets closer to midnight, I get a dose of BOTH Nyquill and expresso. So now I feel so tired but CAN'T sleep! And I feel like Im going to explode!
So around 2am, sometimes as late as 4am, I finally fall asleep. Sometimes earlier if the sleeping pill works. Then I have to get up about 6am. Sometimes earlier. And I toss and turn all night, sweating and I wake up sore and tired again.
This morning was nice because that happened last night, but today is my first day off in months! I dont have any cash to shop with, no where to go and nothing to do. I got to sleep in a bit, and am about to take a nap.
I think Im dressed for the occasion!

The Weary Zebra

See and download the full gallery on posterous

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SHUT UP AND LISTEN!

2010-06-03T13:14:00.003-05:00

Ok, before I start this rant, I want to thank the DFW Smart Car Club for their generosity. My friends in the club showed how much they appreciate what I do for the club and gave a substantial donation to help Mrs. Zebra and I up to Seattle. Thank you all!

But something else has really started to bother me and I had only really heard of this. I had never experienced it, at least in my face before. I had a co-worker ask me, and later my boss did too, why I need so much time off after surgery. "Its not like its cancer or anything." WTH? (I mean I know they just dont understand, and they are really awesome people but I need to blow off some steam so just bear with me). Then my aunt tells me that Cushing's doesn't have the "torture and death" that cancer has. EXCUSE ME? Oh, so Im not SICK ENOUGH for anyone, am I?
Look, I don't want to down play down cancer. It can be a very horrible condition. But I know more people that have had cancer and have told me "you know, they caught it early and treated it, and Im fine. Kemo was bad, but now its like it never happened." I have YET to meet or talk to ANYONE with Cushing's that said ANYTHING like that! First is the fact that there is a SIGNIFICANT number of people who have Cushing's and don't know it. MY MOTHER WAS ONE, at least as far as I can tell. We will never know for sure. I say WAS because one of the symptoms of untreated Cushing's is an early heart attack and early death! Aside from that, Cushing's is hard enough to get diagnosed. Some people wait years, or die waiting because the treatment for their weight gain, diabetes, high blood pressure, constant agonizing pain all over, insomnia, depression, constant diarrhea, mood swings, hair loss, hirsutism, blindness, nasal issues, ADD/HD, infections, thin skin, constant feeling of heat or cold, body wide acne, cysts, bone and joint problems, thats all I can think of off the top of my head. THATS NOT BAD ENOUGH FOR YOU PEOPLE? THATS NOT SICK ENOUGH? AND Cushing's can LEAD to cancer!
THEN, there is the treatments! Its not as simple as cancer in many cases. Best case scenario, you get your pituitary tumor taken out and try to ween yourself off the overdose of cortisol your body is used to. I've had tastes of this time and I want to die. No, not "Im emo, and I want to die", no I mean "Please kill me so the pain goes away." But thats not sick enough.
So, that surgery fails. You can go back in, or they can try radiation. I have a good friend that tried that. So much, her pituitary is shot and has the texture of an eraser because of it. In that case, you get the lovely decision of living the way you are, or trading your disease for Addison's by having your adrenals taken out! Ok, so you choose that and take meds the rest of your life... Except that THIS procedure might make you grow tumors all over your brain that they cannot operate on. Thats called Nelson's disease. And this is SOOOO much better than Cancer! SURE!

Look, just because YOU don't understand what I am going through, doesn't give you the RIGHT to tell ME Im not sick enough. You have NOT FREAKING IDEA WHAT I HAVE BEEN GOING THROUGH FOR 18 YEARS! Either ask me questions and talk to people who have this for STFU!!!!

"My invisible disease is MORE REAL than YOUR medical degree!" SO STEP OFF!!!

If you Cushies have anything to add, comment so the ignorant people who read this can get a better idea of what we go through.

The Weary AND ANGRY Zebra

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Cushing's Study Today

2010-05-25T08:34:00.002-05:00

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

The Weary Zebra

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Severe Pain?

2010-05-23T18:19:00.003-05:00

Good Lord, did that hurt! I was eating lunch and slamed my left knew into the solid wood table leg! The legs are very close together here so it wasn't hard to do! But what happened right after had not happened in a long wile, at least not in response to pain. I started to pass out! The pain made me cry, then I got dizzy. I started to black out, and all the sound got muffeled! Just as I started to fall asleep, something kicked in and I woke right up! Not only did the pain subcide, but my aches from withdraw were dulled! After about 30 min, my knew hurts again and I ache. But good night! I still don't know what happened...

The Weary Zebra

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Another Rare Day

2010-05-16T20:22:00.002-05:00

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

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Lil' Buddy

2010-05-10T10:46:00.002-05:00

Well, I felt pretty crummy last week, and especially Saturday. I was either super high and miserable or low and miserable. And it seemed our cat, George DeKat, knew it. He usually does. We have a routine every day. I come home first usually and when I open the door, he is waiting for me literally at the door. He follows me around while I get ready to decompress, and we sit on the couch and I do nothing but pet him and watch TV. If I try to check email, he gets mad at me.
The day I took this picture, Friday, I got off early and went to lay down before going out with friends. Knowing how exhausting it is, I knew I needed to rest. He didn't like this, and usually will ignore me the rest of the evening because of this. Not this time. This time he got right up and laid on me. He knew I needed to have some company. He did the same thing when we got home that night. He knew I needed to pet him, to relax.
Our daily routine may seem like its just for him, but really it is therapeutic for the both of us.
The Weary Zebra

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Errands and Pride

2010-05-06T10:04:00.003-05:00

I wont lie. I hate mundane shopping. I love cool shopping. Shopping for gadgets, computer parts, movies, action figures (don't judge me!), costume parts, etc. But shopping for clothes sucks (I cant wear most of the cool stuff, but Big and Tall is getting some cool stuff. Will post pics of dork pants later!), and grocery shopping kills me.
Two days ago, I had to make yet another quick trip to Wal-Mart. This weekend, we need to make a list of stuff we need. Anyway, everything was grocery except the Miracle-Gro. Funny they come in singles, like Kool-Aid. My mother always used to say she fed us the stuff. And the way the store is laid out, all the plant stuff is on the other side of the huge store. So I grab a cart and head that way. Now, I remind you that even though I have had Cushing's for 18 years, my symptoms have only gotten really bad the past 3-5 years. I used to pull 10 of these carts in at a time with rope hundreds of times a day. When I was a cart pusher at this same store, I could push 100 of them with two guys helping and one to steer. I didn't make it half way to the other side of the store with ONE empty car before I had to stop and rest. I was pouring sweat and ached all over like I HAD pulled 10 of these. You can imagine what it was like when I got it this full. This was most of it. I juts got some fresh veggies and checked out at the self check out.
When my back was out, I had no problem using the electric carts. And to some degree, it is still out. But I didn't want to use the stupid things again. This trip showed me that I just might have to the next time.
Or just drive my smart inside.

The Weary Zebra

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Nightmares

2010-05-05T08:39:00.002-05:00

Not all Cushies I have talked to have experienced this, but many have. It seems that in some Cushing's patients, when cortisol is high and the patient is able to sleep deep enough to dream, they can have horrible nightmares. These nightmares are fueled by the cortisol and what it does to your mind and emotions. It already wreaks havoc on your body and daily emotions, and one's ability to sleep soundly. But these nightmares can border on real. I had one last night that was so real, I was actually depressed most of the morning. Most of the time, I don't dream. When I do, it usually is a nightmare. And when I have them, I usually wake up screaming or crying.
The saving grace is that even though I wake up just as or more stressed than when I laid down, my wonderful wife is there to greet me on the other side. If you know a Cushie, today give them a hug. Not too hard, but hard enough. We don't want any bruising.

The Weary Zebra

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Is Blood Thicker Than Water?

2010-05-03T12:22:00.002-05:00

The newest and one of the worst possible symptoms of Cushing's disease: Relationships suffer.

I am very blessed to have a wonderful, understanding wife. I dont know if she would understand what I am going through if SHE were not going through it too. I need to get her on to talk about her struggles. Anyway, this month is the one year anniversary of my mother passing away. Shortly after, in July, we found out that I probably had Cushing's. Since then, family has been growing ever distant. Some even expressed they wanted me to die and stop making Mrs. Zebra suffer (paraphrasing). It has been a rough year, but you would think that a tragedy such as my mother passing would bring the family closer together. In fact, I don't think anything has changed, if it hasn't gotten worse.
My brother, whom can be the coolest guy ever, seems to ignore that I am sick. I dont know if it for his own mental health (very likely) but a little acknowledgment would be nice. He DID invite me to a local concert which was great but I had to work and I don't think I would have had the energy. Its not saying much, but we are actually closer to each other now than growing up, but he is 5 years younger than me and we never got along that well. He was the spoiled brat and I had to work twice as hard for every bit of attention I got. He is still spoiled, but he is enjoying being single, and no bills. Be he is so wrapped up in his own life, he just glazes over me or anything I say.
My dad is the kindest person I think I have ever known. He is really my step father, but I only know that as a title. He married my mother in April of 1989, 5 months before my brother was born, and took me in as his own. We had struggles with my mother got sick 10 years ago, and he made some mistakes. But after my mother died, and seeing the personal hell he went through, I forgave him. But now that he is alone (his girl friend left, now the loneliness hurts again-been there, done that) he has withdrawn. He doesn't know what to do about me and he live far enough away that its hard to get out there. I know he cares, but he seems helpless and withdrawn. And he cant fix it like he fixes my car! So that suffers. NOTE: He is not blood related, very important

My sister.... To start, my sister did not live with us. She lived with her father, my mother's second or third husband, in Kansas while she was in Tulsa, OK. It wasn't until we all moved to Texas that I even remember meeting her, and barely. She was always around, but never too involved. One summer, she came to stay with us and found out how good she had it back home. She always resented our mother for making sure she would be taken care of. I think she saw me as an extension of my mother and resentment was transferred. She promised for years she would come hand out with my brother and I, but she was 16 and I never held it against her. Others did, but when I was that age, and a but older, I knew better than to promise those things. I learned why she was so busy! When she had her kids, they were hardly ever allowed over to visit us. But she was always there in the background. She even helped with our wedding. Helped isn't the right word. She MADE SURE the church was well decorated and stayed late that night, and after the wedding the next day to clean it up as her gift to us. I will always remember that. But she got really distant after that. Im not sure what happened. We go over and visit, and after about an hour, the air would get thick and we felt uncomfortable. Then my mother got sick, her and my sister fought for nearly 5 years and I finally got her to visit our mother. My sister took over when our mother passed. I didn't even have a chance to panic.
I really thought that this would be what brings the family close. She shut herself off from everyone. When I got out of the ER in July, we went over to try to catch the tail end of the July BBQ, but it was too late. So we told her then what we had found out. At christmas time, we told her about the information we had gathered. In February, we told her about the tests I was doing in Dallas, and the doc in Seattle. I emailed and messaged her, and when I got the courage to call, it would always go to voice mail. Now a days, I really feel shy on the phone.
All this time, no calls. No emails, no social network posts. She reads my posts, she told me so. But nothing. Even when we told her we were in Seattle, she said she didnt know. And that was that. It bugged me enough that I messaged her as to why this was going on. I have a brain tumor, but it is nothing as bad as leaving her husband and kids or "possible" cancer (which we talked about and prayed over wit her) or her hysterectomy (we visited her in the Hospital for that one too). And she starts this pissing war about how bad her life is living on her own for the first time and how I need to feel bad for her! I just want acknowledgment! I want her to be my sister! And today, she tells Mrs. Zebra that she never wants to talk to me again (3rd time in so many years).
My uncle refuses to talk to me, and my aunt is kind enough to drop a line every once in a while. She's got her own medical case to deal with.

So my own flesh and blood, sans my aunt, has seen fit to practically, and literally, disown me. Because of this damn tumor in my head. 18 years of dealing with it, and all of a sudden relationships die. This isn't even including all the friends I have lost. But friends come and go.
My inlaws, while they used to want me to forget about this disease and kick it, are coming around. My father in law is offering to help me around the house while in remission.
But my own flesh and blood disowns me.
My step father and in laws step up how they can but even they only can do so much. I haven't felt this betrayed since my mother kicked me out of the house 7 days before I left for boot camp. Even then, people not related to me took me in.
Sorry this one was a novel. I just needed to get it off my chest. Hell of a way to start my week.

Back to work...

The Weary Zebra
WRITER'S NOTE:
Ok, so no one is reading the posterous blog I post this to first for connivence, so Im throwing away the Zebra Snippet thing. For those of you who don't know, I use posterous.com to post my blogs when Im not able to really get to blogger easily. I can just email the blog post, after composing it for as long as I need to, then come back to blogger to add my tags. Sorry, not relevant to the update, but it popped in my head that I needed to clarify that.

Also, Yes, I have insurance now, but not having insurance for such a long period of time, and not having it when I started this blog, gave me the idea to not only show how hard it can be to live with this disease, but to do it with out access to proper medical care here in the states, and what it would cost to do it cash and carry. My wife does not have insurance, and she will start testing soon for Cushing's.
Thanks Beth!

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Official Diagnosis and Surgery

2010-04-29T16:57:00.002-05:00

Well, I got the call today....

I knew it was important when they called Mrs. Zebra first, and conferenced me in. Kind of like when you are called into the principal's office and your mom is standing there when you walk in the door... yea, that kind of stomach turning nervousness... but I knew what he was going to say. Why so nervous...

I went to the back and Dr. Ludlum got on the line.

His pauses as SOOOO long...

He starts off by asking me how I felt toward the end of the week. Truth be told, I don't remember. Its been a week, and I didn't sleep that week... but I remember it wasn't great, and I was up late against my will, red face, stripes, etc. Apparently, my tumor turned off about Thursday. My dex reaction was high normal. My UFCs from Monday through Wed were 150, 180, 190 (take that OLD PCP DOC!) but my IPSS didnt show anything. Except..

long pause

The tech said he wouldn't trust the numbers if they came out normal. He said my left sinus cavity is way to large, and will throw the numbers off, lowering them. And it did. Made them normal.
Long pause

Then he said that the UFCs should be enough to officially diagnose me. His exact words were, "You have The Cushing's" And my world stopped. My journey for a cure only really started this year and already I have a diagnosis. It is elating, but t the same time I feel guilty that so many others fight for years for it. But he wasn't done. He said he needs a bit more proof. My CT of lungs and abdomen look good, and he wants another Dex test, but wants an Octreotide scan to show any tumors. Kind of proving that it isn't anywhere else!
Now the problem is financing. Our savings is blown, tax return gone. I will get a bit of cash when we go to the convention in early June from our hotel mates, but we might need more. And... Mrs. Zebra cant come that first week. If she did, she would miss surgery because she would have to go back to work. And the Inn, while less expensive than a hotel, costs us more in rent for two weeks. So we ask for prayers and if you have any donations you would like to give, I will be attaching a paypal button on the blog. Its easy and you can use a credit card or checking account. Anything is appreciated.

So, here we go again....

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Loosing More Hair

2010-04-28T12:51:00.002-05:00

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

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The Zebra Wife has something to say!

2010-04-27T19:56:00.002-05:00

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

The Weary Zebra

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Cushie Camp Day 5

2010-04-27T08:40:00.003-05:00

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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Day TWO!

2010-04-26T22:51:00.001-05:00

I must have been tired when all this was going on because HERE is day two! I was out of it for a few days. I feel like I am finally recovering... still bruised pretty bad though. Sorry for the confusion, but here is day two!

The Weary Zebra

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Camp Cushie Day Three and Four

2010-04-25T21:13:00.004-05:00

Here are the video updates for Day three and four. Hopefully now, you know how rough this week is. I dont even have a Day Two video anymore. Im still looking for it...I lost a day of updates...

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Camp Cushie: Day Two

2010-04-25T21:06:00.002-05:00

For some reason, I cant find the video I did for Day Two. I will look for it again, but I remember doing it... Does anyone remember watching it...? The travel lag and the Cushing's is not playing with my head well... So instead, here are some pics of our "accommodations". Dont except much!

http://gallery.me.com/iveybrandon#100273

The Weary Zebra

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Camp Cushie: Day One

2010-04-21T02:53:00.002-05:00

Day 1: Rough Shot over the Bow
I am still working on the VLOG, and it will have better info than I do now. Day one was rough. Whatever you do, if you come, go shopping in a TAXI! Dont take the bus for groceries! Lugging $70 WORTH OF $40 grocery all over downtown was not fun. Especially with a picc line in your arm. Im doing blood work every 4 hrs, and I met with Dr. L yesterday. He is SOOOO cool! His staff is great and the staff at Cherry Hill is the best! They are so friendly and funny. Im sleepy now, but I did a 15min vlog at midnight that is much better and has more info.

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Swedish Medical Center Prolouge

2010-04-19T02:05:00.002-05:00

Well, today was amazing, though we are exhausted. We had two hours of sleep before our flight left this morning for Seattle, WA to see Dr. Ludlum at the Swedish Hospital. It was my first commercial flight and the first time I had ever been further west than Denver. The view was amazing and I will have a really cool vid about the flight later.
We took a nap after we checked in at the Inn at the hospital. I will post a pic of the room later, but if you are coming, do not expect much. It is a converted patient floor. We spent the afternoon at Seattle Center. We hope to do more over the course of the week but the schedule is very tough. One day this week, I cant eat most of the day. I will keep you all informed. Tip #1: If you decide to come, try to be back before 9pm. If you get back later than that, you will be locked out and will have to go in the ER entrance. Night folks! Oh, if you want pics from today, copy and pate this into your browser and enjoy!
http://gallery.me.com/iveybrandon/100242
The Weary Zebra.

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Zebra Snippet 10: Sleep

2010-04-13T08:35:00.002-05:00

Sleep. The night time rest that mocks me. That mocks most Cushing's sufferers. For the first time in so many months I can not count, I got 8 straight hours of sleep. Heck, This is the first time in so many months that I got more than 2 straight hours. And I feel like I didnt sleep at all.
From my experience and what others tell me, Cushing's Patients have a love/hate relationship with it: We love it, it hates us. Some people, like myself, have two options when it comes to sleep usually. We can try to sleep and end up tossing and truing, dozing in and out, heart beating out of our chests, not resting. Or we can stay up, wait the cortisol out and hopefully get a few hours of light sleep before we have to go back to work again. As I write this, I can barely keep my eyes open. I feel like a train hit me and wondered what happened in the 8hrs I spend unconscious. It feels like I spent the entire night drinking vodka and tequila. And no, I didn't. Just saying this must be how it feels to do so.
5 more days until I step foot in the Land Of Port, to see Dr. Ludlum.

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Zebra Snippet #9: Cushing's Awareness Day

2010-04-09T14:44:00.002-05:00

Yesterday was Cushing's Awareness Day. Never heard of it? Not surprising. Its not covered in the corporate media and as Cushing's is relatively unknown, so is its awareness day. Kind of ironic, right? As we find more and more about this disease, doctors are discovering that it is much more common than once thought. 1/5 the population, 20%, are said to have a pituitary tumor. That cant be normal. But the doctors of this country who are not researchers are going by what they were taught in school: It cant be a platypus because they are to rare! If you are reading this and you think you have ANY of the symptoms of Cushing's, please see a couple of doctors. And pass along our cause to others. The more we talk about this, the more we all will know. And knowing is half the battle.

(...G.I.Joe!)

The Weary Zebra

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Zebra Snippet #8: A Good Day

2010-04-06T15:36:00.001-05:00

Saturday, I felt like junk. I was having GI issues all week. I couldn't eat because I was not digesting anything. But the cortisol made me hungry. Saturday, our small apartment was flooded with sewer backup. Our entire building was affected. I couldn't sit still during the film we went to. And I felt like a slug all day.
Sunday.... Sunday was wonderful. I didn't need a cane, I had an appetite to eat! I had enough energy to clean our apartment getting ready for our trip on the 18th. I paid for it Monday morning, but by Monday afternoon was ok too, I even replaced R2D2's headlights. Good thing I felt good too, because my wife has a stomach bug. So this morning, I decided to brand my droid. I added one last decal to the window. Its in the upper right hand corner. When they happen, days like Sunday and yesterday afternoon are Godsends. I cant thank God enough for them. The fallout can be bad, but I get so much done its worth it.

The Weary Zebra

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Zebra Snippet 6: Alone

2010-03-25T16:25:00.002-05:00

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

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Cushings and Hair Loss

2010-03-22T00:53:00.001-05:00

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?

2010-03-21T23:21:00.001-05:00

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...

Next Stop: Camp Cushie!

2010-03-16T22:21:00.000-05:00

Today, I kicked my PCP to the curb! I haven't told him yet, but the last few days have been THE HARDEST dealing with him. He didn't believe in Cushing's until Friday, then all of a sudden knows everything about it. He told me he would not refer me to Dr. Ludlum for a workup unless I went and got a workup from one of HIS endocrinologists. Knowing him, he would have told them to ignore me and send me back. He refused on all accounts. I mean, obviously, Im just a fat and lazy sack of crap!

But I still need a referral. So Dr. Ludlum sugested I find another doctor and try to just get referall. I decided to go to a doc-in a-box (PrimaCare= ER walk in clinic) and not only were they able to do the referal (CareNow wouldnt) but the doctor I saw is so intrested in my condition, she wants me to update her on it when I get back. If she ever gets her own practice, I will pay her a visit!

We are getting flights now for April 18th and the 23rd. This is finally hapining.... It hasnt fully sunk in yet....

Next stop, Camp Cushie....

The Weary Zebra

Zebra Snippet 5: The Walk

2010-03-14T16:39:00.002-05:00

Many people take for granted the ability to do every day activities. Going out on the town is something most people just "do". People with Cushing's, however, do not have this luxury. We have to plan for every part of our day. The planning alone can sap your energy with what this disease does to ones mind.
Take a trip to the mall, for instance. Just park and go in, right? Not for us. First you have to figure out which way is the right direction to go, then remember it. Then, comes the hard part: finding a close enough place that you won't be TOO tired or TOO out of breath to do your errands. As usual, I dropped the misses off as close as possiable. But after having to park way out, I really wish I had a handycap plaquard. It's harder for the misses to do the walk, but after seeing this sight, I really can't wait for tha diagnosis. This summer, I can forget about walking this in the 110° heat...

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Green Light for Tests, But Need Referal

2010-03-12T16:25:00.002-06:00

"Dear, Dr. XXXX
I have been tracking my symptoms for a few months and based on my symptoms and the research I have done and people I have talked to, I elected to do testing for Cushing's disease. I did a 24hr UFC and my results are attached. It is 3X the normal high. Because of this, I requested a second opinion froma specialist in Seattle. Baised on his recomendation, I am asking for a referal to see him. They need it for me to cross state lines. They have requested the following faxed to them:
" Refer to Dr. William Ludlam for extensive workup and treatment for potential complex Cushing's Syndrome and pituitary disease. "
Because of my test result, we got insurance on me just in case I am positive. If you have any questions, you can call me, or Dr. Ludlum's Coordinator

Thanks,"

I was given the go a head for testing from Swedish and my *spit*insurance company after a $500 deductible. But now I need to convince my primary doctor or the doctor I did the test with for a referral . Both are very egotistical, but since my doc wont loose any money on the deal, I went with him first. I got a conformation that he got it and will get back with me. Whatever prayers or good vibes you can spare, please send them my way!

The Weary Zebra

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The Porcelain God

2010-03-09T08:34:00.003-06:00

This is what I saw most of yesterday. Well, this isn't MY toilet, but you get the picture. It all started Sunday night. I think I overworked myself when I got my "high" by doing some major cleaning. Well, trying to anyway. Moving furniture, boxes, my wife yelling at me to stop. I should have listened. I got light headed and laid down. About 10 min later, I couldn't move. It hurt to breathe. I was nauseous, dizzy, and confused. I figured I had just done too much so I went to sleep.
By 6am yesterday, I was puking my guts up. I had to about three times before I left out the door for work. A little cola and I was fine for a few hours, then visited the porcelain god four more times in 4 hrs. I couldn't concentrate on work so I left and spent the entire day in bed, trying to either sleep or find out if this was a bug, or a sign I have cyclical cushing's.
I read later that evening if I put 1/4 teaspoon of 1% hydrocortisone cream (anti-itch) that if I was having Adrenal Insufficiency symptoms, it might help pull me out. SO after throwing all day, thats exactly what I did. And about 30 min later, I had an appetite (small one, but it was there), and I didn't feel as achey or dizzy. I don't believe in coincidences, but Im still not 100% this morning. I guess either way, its Cushie. Either its cyclical, or just bad immune system. Oh well. Hopefully, Dr. Ludlam's office will get a hold of the insurance company and I can be on my way to a cure.

The Weary Zebra

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Zebra Snippet #3 or 4?

2010-03-01T15:22:00.002-06:00

Brain Fog is bad today. SO I don't remember which one this is. But I wanted to do a quick update. I feel like trash today. I have the usual bad feeling, plus the ache and painful joints and mussels, but my mood is horrible too. Im so depressed. Im worried about if work will let me take off if I am cleared for surgery, Im anxious to hear back from Dr. Ludlam if i was authorized by my *cough*insurance*couch* to get tested. It is very tight, but we were able to get ME insurance. The misses still SOL right now.
So I just want to curl up in a ball and cry myself to sleep. And as tired as I am, it wouldn't take long.
Still looking forward to my first commercial flight...
The Weary Zebra

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Confirmation! And doubt?

2010-02-21T00:49:00.002-06:00

Well, I talked to Dr. Ludlam on Friday and baised on my UFC, he says I have Cushing's YEA!!! He still wants me to come in for the one week workup that is nick named "Camp Cushie" but he says that by failing the Urine Free Cortisol test, it should be realitivly easy to fail one or two more tests.

At Camp Cushie, he has people come in for 5 days and test every day. Not just one test a sdy, but blood, urine, saliva, etc every 4 hours for the first 2 days. The next 2 days I take a pill every 6 hrs to supress the cortisol (I think) and the last day there is some testing. For me, he also wants to do a IPSS test where they stick a tube from a vein on my thigh into my brain to determine what side of the pitutary gland the tumor is on. Its a two hour test total. I am SOOOO excited. The down side? The cost.

The tests at The Sweedish Medical Institute will cost over $30,000! So, because of this, we got ME insurance. The misses is still uninsured. It will be very tight here. for a long time now. And we are PRAYING they dont secrew me out of this before next year with pre-existing BS. But Dr. Ludlam was so impressed with my results that he was talking about me staying for 2 weeks to do the surgery the next week! I will have to see what happens, but things are looking up! It IS all in my head!

So we have started the process of telling friends and family. But, after the discussion with my mother in law, I feel like I must talk about this:

Faking it?

Well, it seems that my mother-in-law thinks I am sick so that we ask for money. In her mind, I am not sick and I am really just faking it or that it isnt as bad as we make it out to be, so that they will give us money! I haven't been this insulted since the LAST time she accused me of stupid crap! Like being in a cult and a devil worshiper, or EVIL! (yes, she said I was evil for taking her baby away from her. Issues? Just a little). Anyway, even to people in their right mind, this is a hard disease to explain. They are seemingly unrelated symptoms (chest pain, fat face, fatigue, urinating more, bruising, thin skin, etc) and its RARE so you cant have it. Its too rare for ANYONE to have it, right? It is said that 20% of the population has a brain tumor. That isnt rare, that is UNDER DIAGNOSED! And tonight's stress is brought to us by a woman who SHOWS many of the symptoms and has just undergone weight loss surgery to correct the symptoms! On top of it being hard to explain, my mother-in-law has trouble FOCUSING (symptom) on anything not inside her head or in front of her face! So a phone convo that is more complicated than, "It is snowing" is more than my wife can handle. I have given up talking to the woman about anything important, but like I said, its hard enough with normies.

My dad really tried to understand and so have the friends I have told. Im scared to tell those at work just yet, but it will have to happen sooner or later. I really should just adopt the attituede of "either try to understand or STFU!" Well, time for der Shower and to ride this cortisol high out... still hard to beleve that a) Im 25 years old and need a cane and b) this might all be over soon... wow...

wow....

Emotional Rollercoster

2010-02-14T22:59:00.000-06:00

Cushing's can be a ride for sure. But not nearly as cool as a rollercoaster. Maybe, like one you are strapped to and cant get off.

Imagine, one moment you are depressed and tired. You ache and have really bad anxioty. Then, all of a sudden, you have all this energy and get ticked at the smallest thing! And this happenes daily. Day in, day out. Oh, and you dont sleep. Maybe 3 hrs a night.

But whats worse: When you finaly get your test results back, and they look like they point tword a diagnosis... and your doctor craps all over them telling you a bunch of BS about them. Saying that your faking the tests out and cheating! It makes me so mad! And depressed. Like I messed up or something. IDK, I just look to my friends for support... family still doesnt get it yet.

The Weary Zebra, still riding the loops...

Day For Night

2010-02-07T04:18:00.003-06:00

Do you see what time I am posting this? Yes, I am up that late. My heart is pounding, my chest hurts and I am WIDE AWAKE! The last week, I probably have slept less than 10 hrs. I cycle really hard, and seem to do it randomly, although I am just starting to figure all this out. When I THOUGHT I had figured this out, I was awake at night, starting about 8pm, until 2am or so, and tired all day. This week? It was like my adernals said, "HOLD UP! Lets throw him for a loop!" This week, I have been at least fairly wired durring the day (and except for the brain fog and innatentiveness, it was mostly great. One day was really painful, but ok otherwise), then would go into a lull around 6pm until close to 9pm. Then the high started until 2am! Couldnt sleep well from 2am-6am then it was time to get up. I probably got up every hour each night.

Then today, I got to sleep in (well, I mean Saturday)!

I was able to fall asleep around 3am, and slept preaty badly until 5:30am. Then it was nightmares (not usual for me to dream) until I woke in a panic at 9:45! My chest already hurt, pulse was high, and I was already angry. I was ticked off all teh way until 1:30pm, when my low started. I had to run errands till 3:00 pm, at which point, I passed out for a few hours.

Now Im up again. I *LOVE* not sleeping! At least I had something construtive to do earliler. And the rest of my time has been spent wondering why my ice machine hates me! I cant function in this world like this anymore! I need to get a diagnosis soon.

Speaking of: I got my first UFC back early Friday morning (yep, was up when I got the email at 3am). It shows I have Cushing's. I emailed the endocrinologist I saw, since I dont have his number, and have not heard from him yet. And I called the Swedish institute and am waiting on a call from them and a couple of studys. Not if we can my wife on the same road to a DX! Getting sleepy finally so G-Night!

Zebra Snippet 3: Brain Fog

2010-02-03T12:45:00.002-06:00

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?

2010-02-01T09:35:00.002-06:00

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

2010-01-30T00:46:00.003-06:00

...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...

Zebra Snippet: Zebra Spoons

2010-01-28T09:44:00.001-06:00

A good friend and fellow Cushing's Blogger, actually featured in the related area here, messaged me yesterday after I had been trying to get a hold of her to see how she was doing. That should have told me enough, but I persisted and when she did finally send a reply, she told me about the Spoon Theory. Its not really a theory as much as it is a way to explain how one measures the amount of energy they have for the day.

For those of you who don't know what it is, you can do a google search for "You Don't Look Sick spoon theory" or click here for the story. Basically when you are sick, or have a disability, you only start out with so much energy for they day. Everything you do saps you of energy. So you have to be aware if that. For Cushing's suffers, the amount of spoons can vary from day to day, especially if you cycle like I seem to do. She told me that she was out of spoons because of how sick she had been. I know the feeling.

So read the story and thought how it applied to my life and passed out. Apparently, my cycles have switched to somewhat "normal" yesterday and today. Except I feel like its a switch and they are too far apart. Last night, I could barley keep my eyes open, and when I was awoken this morning I was dragging and very sore. Then, as I started my routine, my heart started to pound and the high started.

Anyway, I knew how many spoons I had today, and the files I am dealing with lately, full of scripts, are taking away my spoons little by little. They have been tough to deal with, but today they are really bad. I feel like i should have stayed home, but the Adderall is helping some. Lets see how long my spoons last!

The Weary Zebra

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My Letter To The Doctor

2010-01-24T23:06:00.000-06:00

"...I cant hold back..."

Well, thanks to @tealou Here blog here, I finally sat down and wrote a general letter to my current and future doctors to show what has been going on my entire life. Like the picture above says, so far the docs say this is all normal. Enjoy!

Dear Doctor,

I am writing to you before our appointment so that you don’t feel bombarded or ambushed with all of my information – it allows me to structure my thoughts and hopefully will help you see in black & white the weird journey I have been on in the last few years…

After a consult with a doctor in my hometown of Lewisville, and talking with several patients with the disorder, I have come to the conclusion that I might have Cushing’s Disorder.
I acknowledge how rare these disorders are. But I want to be healthy and I don’t know how to get through to you without appearing like I am in denial for a hidden donut stash… or something…. But I know you’re a good Doctor so here goes.

I have spent the last year on dexamphetamine after a diagnosis of ADHD, and after a year I do not think I actually have ADHD. There are a couple of reasons for this:
My ability to focus, and other “symptoms” of ADHD, eg anxiety, inattentiveness, insomnia etc, should not get worse over time. As an adult, it should get better. My ability to function is actually getting worse as time passes.

When initially prescribed Adderall, my anxiety and other anxiety-related symptoms disappeared. The effects wore off within a few weeks. I lost no weight on Adderall and actually gained 20lbs in the year I have been on it.

I received a formal diagnosis of ADHD from Dr Launis and was prescribed dexamphetamine. Again, I initially functioned well. The Dex helped with my fatigue and anxiety and I felt well for a month or so.
After a month or so of taking dexamphetamine, my body quite literally felt like it was “shutting down”. I had debilitating joint & muscle pain to the point where I could not move. I could not stay awake.
I looked on some ADHD support forums online, assuming that it was a side effect and tried tweaking my dex dose, on the assumption that it was a “crash” from metabolising the drugs too quickly. Nothing helped.
It all led back to Cortisol. Stimulants don’t help that at all. So now, I want you to consider this:

Some background:
I was 6lbs 12oz at birth. My mother was a petite 5’5 but would starve herself to be a size 10-12, until she had children. She was told she would never have children and went years with out having a period. Her middle ballooned after her second child, started loosing her hair, gaining weight in her middle only, growing facial hair, and her joints and muscles ached all the time. My father is of normal weight and 5’10 from what I know. My mother and grandmother also have a history of heart problems and both died in their early 50’s. My mother did not have high cholesterol, but had thin skin, hard to heal, diabetes, thyroid problems and sleep problems. She would have trouble sleeping at night and would stay up late trying to sleep while fighting sleep during the day. I was a skinny child & considered “underweight” until puberty.
I then steadily gained weight from the age of 8 to about 150lbs by the age of 11.
I now weigh 310 lbs

I eat an average of 1500-1800 calories a day, often less. I was active in ROTC in high school, but it got harder and harder to participate. I even trained with the Navy training to get in, but by belly would not go down. In fact, I gained weight during that time even though I was on a strict diet and exercise regiment. Since then, when I have the energy, I exercise. I have a desk job but it is only recent that I have become less active (mostly because of health problems but also because I work long hours). But I am still moderately active.

I wanted to produce a timeline to try and paint a picture of why I am so frustrated. The timeline consists of the major events, but over the years I have had other, general symptoms (listed underneath the timeline) that have been explained away by health professionals over time, to the point where my faith in the medical system is non-existent.

At the insistence of my friends and family I have decided to grow a pair and seek diagnosis for what I suspect. I suspect I have Cushing’s, or a form of Adrenal disorder, that is affecting the thyroid, and is made worse by stress.

TIMELINE
Birth-2000, culminating at Age 9 – Extreme, unexplained fatigue & general ill health. Could not move due to muscle & bone pain. Family GP and parents wouldn't listen to me, said it was growing pains.

1989-1999- Was told I had behavior problems early on. Had trouble focusing, would get picked on for being shy, and later for being fat. Would blow up when fed up, at seemingly random times. Always was a sad child. Anger and sad emotional problems persist through adulthood.

1993-present – Unexplained rashes that would ‘flare up’. Originally thought as some sort of allergy. To this day, I have to wash new clothes before I wear them, and usually have hydrocortozone next to my bed. Bumps all over my arms that turn purple when my stretch marks do. During the day, they are usually pink to skin tone, but when I feel hyper or high they turn purple: both stretch marks and bumps. Clear, skintone bumps also persist. Usually filled with only clear liquid.

1993-Present– Balance issues where I would be standing, and just fall over. Same time period, I started getting bad colds that would turn into chest colds, and later bronchitis. To this day, it happens every time I get a head cold. Skin has hard time healing any wounds and acne is bad and stays bad. Night sweats persistent nearly every night despite the cool temps my mother and I keep in our homes. She had night sweats too.

1993-1999- Would wake up in the middle of the night, my heart pounding, chest hurting, not being able to breathe. Would sit on the floor and rock until it stopped or I had to get ready for school.

1994-1999 – Missed at least a week of school each year due to chest colds and bad mussel pains. Continued to gain weight. Would ride my bicycle to school each day, despite pains.

1999 Officially diagnosed with Asthma. Was prescribed albutrol and it helps some, but the “panic attacks” still persist. Best described then as, “my lungs stop working on their own and I feel frightened and feel like I have to remember just to breathe.” Due to this, I was prescribed Advair, but still used my rescue inhaler 2x a day or more.

2000-2004 First job at Wal-Mart as a cart pusher. Worked on the lot for 2.5 years, then worked as a grocery stocker pulling pallets. Eventually, I had to move up front as a cashier when the pain got too much to pull pallets around. During this time, I trained with the Navy and would be exhausted each time I would train with them. Started throwing up breakfast each and every morning, uncontrollable diarrhea started and was random no matter what I ate. Was RXed prilosec and then Prevacid for GURD. Steadily gained weight. Lost medical insurance in 2002 after I graduated and moved out, stopped taking Advair. Was engaged, but emotional stress split us up. Met my wife in 2004 after the Navy refused to accept me at 240lbs. Red Cross refused to take my blood donations due to “ Hepatitis” readings in the blood. Was told this was a fatty liver. Hair started to thin during this time also, but has sped up in recent years.

2005- Got insurance through wife’s work. Seen by Dr. Maxwell for GURD and diarrhea. Orders colonoscopy. Comes back normal. Diarrhea persists randomly.

2005-2007 – Started seeing Christian Community Action Doctors, noticed my depression and pains. RXed Celexa, but had no effect. Weight was steady, if not fluctuating. Was told I had high blood glucose, and high blood pressure. Hurt my back from moving, all joints pop at this point, I feel grinding in my knees. Heart palpitations and late nights do not stop. Sleep is getting worse. Have trouble staying awake while driving my school bus. Considered looking into narcolepsy.

2008 – Dr. Lanius starts treating me for asthma. RXs Qvar. Still no Insurance. Focusing on work becomes harder and harder.

2009 – Dr. Lanius RXs Adderall due to job incident. Adderall works for a short time, but stops working. Too afraid to say anything, I continue taking it. July 3rd, 2009, at 11:30 pm admitted to ER for severe chest pains and heart palpitations. EKG said heart was healthy and pain only subsided when morphine was administered. Was wired until then. Admitted to hospital for further tests. Dr in hospital suggested I had Cushing’s and did a CT scan. CT showed nothing, but Dr was unconvinced that something wasn't there. Suggested I follow up with an Endo.

2009-2010 – Weight gain continues despite diet, exercise, and meds. Pain gets worse, fatigue gets worse, night palpitations and “high” feelings persist and worsen. Sensitivity to cold increases. Libido decreases. Hair loss is rapid. Constantly second guessing what people say. Depression worsens. Dr. Lanius doesn't listen to my concerns.

2010- Same chest pains and heart palpitations that sent me to ER happens again. Start cortisol saliva tests on my own, See Dr. Auchus and he allows a 24 UFC, does not believe my symptoms. Finally see pattern in diarrhea. Diarrhea happens when I am sore, achy, and tired. When I feel like my body is shutting down. Normal/Constipated stool when I feel high and wired.

OTHER ONGOING/GENERAL CONDITIONS

 - frequent chest infections when I get a cold - Slow healing wounds 

- Stretch marks that are red/purple especially at night

 - Tingling/numbness in hands & feet 

- Grey and thinning hair - Reflux/Gastro pain/symptoms

 - Carpal Tunnel symptoms in wrist and fingers.

 - Easy bruising/blistering. Get boils & large pimples on body

 - Dental problems from an early age 

- Nails breaking

 - Jawline acne 

-Low Libido 

- Malaise 

- Celexa has had limited effect. ADHD meds help with mood, focus, fatigue and wellbeing some of the time and if I take a day off when feeling unwell, usually cant - Throughout university & other deadline-based activities, my “3 day crash” after it is over whereby I can’t move, have pain, and need to sleep.
My theory is, after years and years of trying to find an answer, that I have a pituitary mass that explains all the “weirdness”. It may be Cushing’s, it may be something else, but I believe that the problem lies in this area.

Whatever the final diagnosis is, I believe that it is also affecting thyroid. Thyroid makes big arms and at least explains the lack of “looking Cushoid”.

When I read the stories of people and their journeys to a diagnosis of Cushings, I kept seeing mine. Despite what Doctors have said over the years, when I look at the faces, and the subclavical fat, I see my own body. I may not be a classic, typical case, but all I want is to be taken seriously and not called fat & lazy, or a hypochondriac.

So, I have requested a 24 hour Cortisone at the time of this writing. Any other tests you can provide to make diagnosis easier will help.

So, hopefully you’ll see that I am being quite serious about finding a diagnosis and getting well. Because ultimately I am the one who has to live in my skin, and it sucks.
Feel free to call me to talk about this anytime, otherwise I will see during our appointment.

Regards,

The Weary Zebra

Who Wants To Hurt First?

2010-01-24T18:09:00.001-06:00

"...I can't slow down, I can't hold back. But you know, I wish I could..."

Living with Cushing's is not for the weak or faint of heart. Being a self-proclaimed caffeine addict, I can deal with most of my "Highs" (though the one that put me in the hospital scared the #@$& out of me) the lows are nothing I would wish on most people. What is worse than every joint and mussel aching, your head spinning and hurting, and your mind trying to tell you that nothing matters? Living with someone going through the same lows at the same time.

Ok, hold on. I know what you are going to say: "You exploit your wife on youtube and then talk smack about the poor thing behind her back." No. I love my wife. To the depths of my soul, I love her. But... Well, here is the scenario WE thought of to explain the situation:

We were both low. Really low. But felt like we HAD to get out of our 800 sqft apartment on the poor side of town. So we flip a coin to see who will hurt more to drive us there. She looses, she drives. When we get to the theater, we argue to see if she will drop me off or not. I loose, I get dropped off.

When we meet up, we see our film (slowly walking in and out of the theater) and when we exit, we meet... the curb. We look at each other and I ask her if she wants to go first while I stabilize her, or the reverse. She tells me to go first. She holds my arm as I ease the leg that is not hurting as much (usually my left leg) and put weight on it as she eases me down. Then she places her hand on my shoulder and eases herself down using me to help support her.

These are our friends! Not just for wheelchairs anymore!

When we are both low together, it can be hard to do anything because we know each other is in pain and neither of us wants to ask for help. Because the low amount of adrenaline makes us feel inferior and depressed, we dont FEEL like we deserve any help. Its the same reason I believe most Cushing's patients go undiagnosed and drink the kool-aid that they are fat and need to diet. So if you are reading this and ANY of this sounds familer, I sugest you bring it to your doctor after doing some research. Start at www.Cushings-help.com. It is a great resource. And if it makes sense, and your doctor doesn't want to hear you, FIND ANOTHER DOCTOR!

I hope I have been some kind of encouragement! Now to hobble away and fix dinner...

"Oh, there ain't no rest for the wicked,
Money don't grow on trees.
We got bills to pay,
We got mouths to feed,
There ain't nothing in this world for free.
I know we can't slow down,
We can't hold back,
Though you know, we wish we could.
No there ain't no rest for the wicked,
Until we close our eyes for good"

"Oh, there ain't no rest for the weary Zebra... 1am

2010-01-24T02:05:00.000-06:00

Well, this is one thing cortisol will do you! I am wide awake at 1am on Sunday. I just uploaded a video to youtube showing you the differences between high and low (well, two in fact. Better GFX to come!) and let me tell you. High is much better than LOW!

When I am low, everything hurts. It hurts to stand, walk, or even move! I have my lows durring work hours and lately its been hard. I have been organizing stacks of scripts and they get really heavy. I used to be able to leg press 400lbs. No way I can do that on a good day, let alone stand on my own. Lifting even my empty cloth lunch box can be rough.

My highs: Well, its like drinking a case of energy drinks in every since of the thought. I am wired: panicky. I feel like I am being chased while sitting down. Most of my pain is gone, but from what I understand its not a good thing. Cortisol not only turns on my adrenal glands giving me the flight or fight response and stressing my heart and body out, but also eats at my mussels. The fact I may not feel pain is due to its anti-inflammatory properties. So its killing me while acting like a pain realized. So I dont know Im dying! All the while making me fat. Fat and happy, right? Now if only I didn't have to work all day, I could catch some really good anime on TV and catch up on my netflix! Oh well, gotta try and sleep. I still have to set up the sermon projection notes for church tomorrow. I dont think they will let me bring my gallon of pee with me so then I gotta rush back and finish the GFX for the YouTube channel.

"Oh, there ain't no rest for the wicked,
Money don't grow on trees.
We got bills to pay,
We got mouths to feed,
There ain't nothing in this world for free.
I know we can't slow down,
We can't hold back,
Though you know, we wish we could.
No there ain't no rest for the wicked,
Until we close our eyes for good"

A Long Time Ago, In A Galaxy Far, Far Away...

2010-01-23T15:54:00.000-06:00

Well, thanks for reading my blog. Im kind of new to this so please bear with me.

It has come to my attention that I have Cushing's Syndrome. If you dont know what that is, please go to www.cushings-help.com. You will find everything you need to know there. Basically, I have a tumor either in my head or in my adrenal glands that secrews with my hormone levels; specifically cortisol. This causes me to be large, in pain, and tired nearly all day while wired at night. Thankfully today I am wired so maybe I can get some sleep tonight.

I started showing signs of Cushing's when I was between 8 and 10 years old. No one knew it then, so I was not diagnosed then. I started gaining weight, having red and purple stretch marks, loosing mussel strength, joints started to hurt and I was told that all of this was normal. I also started showing signs of asthma around this time. My weight would fluctuate, but steadily go up as I got older no matter how much I worked out or dieted. I started loosing my hair when I was 13, and started growing gray hair about the same time. I was finally diagnosed with asthma when I was 14. Since then, symptoms have gotten worse.

Did I mention the things it does to you mentally? I was always mentally "unstable". I was the shy kid who always got picked on for being fat, but once I started panicking, dont stand in my way. I once threw a desk at a kid for messing with me. Now I can barely lift my back pack. I always had a low self esteem, and would fight with depression on a daily basis.

After working with the Navy for a year and a half, training with them to loose weight, and nearly ending up the hospital from their crazy, no carb diet, I gave up. Im fat, Im gonna die fat. In time, I grew to like being fat, except for the joint pain, the mussel pain, etc. Well, that's gotta be from working out hard the day before, right?

I met my big, beautiful wife in 2004 and we were married in 2005. She was the first to notice my purple stretch marks and say anything about it. I gained even more weight in the year before my wedding, even though we were very poor then and did not have much money for food. A few years after we married, she started having the same pains I had had, but worse and faster. We attributed it to her weight and carried on.

Then, July 3rd, 2009 at 11:30pm, I was sent to the ER with chest pains. They ran EKGs and said my heart was fine, but my BP was high (about 150/100) and my chest hurt like hell! So after 10 hours in the ER, they gave me morphine and the pain went away. The feeling of panic went away, the feeling of being chased went away and I calmed. I was admitted to the hospital for testing right then. By then all I wanted to do was sleep. The doctor there said it looked like I had Cushings and did an MRI but found nothing. So I put it back out of my mind... until just a few weeks ago. I found www.cushings-help.com, and Mary and Robin and everyone there is helping me figure all this out.

Because of that site, we have deduced that my late mother, who died in May of 2009, could have had Cushing's, my wife might have it, and her mother could very well have it. Studies that Dr. Freidman in California have conducted suggest 1 in 4 people have a pituitary tumor. The so called "rare" disorder may not be so rare.

My journey begins, and I hope you all will be along for the ride.

Oh, and why the moniker "The Weary Zebra"? Well, my good friend Robin and a song gave me the idea.

She posted on her daily blog here that Cushies are like zebras. And thinking about how cortisol keeps us up at night, I was reminded of the song by Cage the Elephant called "Ain't No Rest for the Wicked" Well, I would call myself wicked, but maybe Weary...

And did I mention, we are going through this in the United States without any kind of medical insurance... the lyrics seem to fit now...

Oh, there ain't no rest for the wicked,
Money don't grow on trees,
I got bills to pay,
I got mouths to feed,
There ain't nothing in this world for free.
I know I can't slow down,
I can't hold back
Though you know I wish I could,
Oh no there ain't no rest for the wicked,
Until we close our eyes for good