Latest in my fight...

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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...

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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

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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

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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

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funny pictures of cats with captions

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

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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

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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

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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

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Testing and Loneliness

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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

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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!

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Set In Stone

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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

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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

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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

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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

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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

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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

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SHUT UP AND LISTEN!

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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

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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?

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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

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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

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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

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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

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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?

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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

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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

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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!

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

The Weary Zebra

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Cushie Camp Day 5

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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



Day TWO!

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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

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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...

Camp Cushie: Day Two

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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!
The Weary Zebra

Camp Cushie: Day One

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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.


Swedish Medical Center Prolouge

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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.

Zebra Snippet 10: Sleep

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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.

Zebra Snippet #9: Cushing's Awareness Day

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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

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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

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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

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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?

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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...