Alone and Sick

Today was especially hard. Mrs. Zebra would help me out on days like this. I honestly dont know how I even made it to work and home. On days like today, she would drive me to work or I would get enough support that I could barely make it in, and would let me relax when I got home. I fell out of bed this morning. I literally had to crawl to my steroids and take some. My memory decided to elude me and I couldnt find my cane. It was in the car. The last week, Ive been on a steroid high, my adrenals working overtime. They are gone now; empty. Drove like 10 under the speed limit all the way to work, after running late as it was. Just couldnt get going. I hurt constantly, but worse now. Depression really does hurt. After work, I had to pick up an Rx so I stopped by the store on the way home. It took me an hour to pick up a frozen pizza, and my Rx. All the electric carts were taken. My brain fog was in full effect as I wondered the 20°F parking lot for nearly 20 min, because I couldnt remember where I parked. Turns out I passed it twice, once being when I exited the store. I called my dad today, and he just told me to "get over" my illness. Because brain tumors are easy to ignore, right?

I usually cheerfully take these trials on, knowing my sweetheart is home waiting to hug me. I have no reason to live now. Why fight?

What is the point?

Depressed and in pain Zebra. 

Really? I mean REALLY?

I dont get it.

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

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

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

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

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

The Weary and very Annoyed Zebra

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

Click here to Donate to our Rent fund.

In gratitude,
A Humble Zebra

Shackled by my Sentence.

I hope you all forgive me for not updating my blog sooner. Nothing has really gotten much better. My testosterone was replaced since last I posted. That has helped some things. But overall no big change. Thats why I havent posted anything. Nothing much to post.

Today was an interesting day. Overall a great day, in my book. And on days like today, Im able to better reflect on my situation. And its worse than I ever imagined. Today, I was in a cortisol high. So today was a different mind set than usual. Let me take you through the day.

I didnt sleep well at all last night.

I was hot, I have pinched nerves everywhere. Both arms are going numb no matter what positon Im in. But when I was able to sleep, I got the most vivid dreams. The only times Ive ever had these kind of dreams is when Im able to sleep durring a cortisol episode. And as usual, it was a nightmare.

In the dream, my mother and brother were both alive again. I was telling them all about our new home in Washington. My sister was there, and she was laughing and having a good time like we were. My dad was there, so happy. Like nothing was wrong. And my brother gets in his car to get something from the store, and he's T-Boned, right in front of me. Of us. My mother is there, sobbing as her baby is taken from her, and passes away in front of me. I loose them all over again. Over the next several hours, I drift between awake and asleep, seeing this over and over.

After one fit, I realise Im running late and it makes me so angry. Trying to keep it under wraps, I fumble through my morning, warning Mrs. Zebra that she is ok, but to watch out for me. She is so sweet. I just want to hold her and thank her, but this train isnt going that direction. All I can do is pull as hard as I can on the brake if I know the train is headed the wrong way, and hope for the best. I dont even remember what was setting me off, but I remember dropping everything I touched. The clumsiness comes with the corisol, and with that comes embarrassment  which turns to anger. To make my morning worse, I remember that I am broke after both of us the night before were too exhausted to cook dinner. We splurged on two Jr hamburgers. And that ate up what little money we had left. So I couldn't take the ferry, but instead had to drive the full hour to work. On my spare.

The enire way to my part time job (yep, only place that will take me, 1hr away), I tried so hard not to beat the cops to the police station. Luckly, traffic was on my side, and only a few people were told where to stick their hand and attitude. By now, Im very worried about the people who I have to make nice with to get donations. What will happen when the part of my brain that tells me to hang up on the crude, rude person on the line stops functioning? At least Im not in ANY pain. Yep. No pain. Thats what a cortisol high will do for you in the short term. Unfortunately  I had forgotten to grab my urine jug and cooler, or call in. I wasted several good urine collection opportunities. But Im collecting now.

Anyway, no rude people. Not one. Not a great day, mind you, but not one rude person. So I didnt blow up like I should have for my case. Doubled edged sword. The easy ride home gave me chances to reflect on my situation. My depression is almost 100% fatigue and stress. Doesn't cure the issue, but reaffirms my theory  And if something doesn't change soon, we will be homeless. Ive been very fortunate so far. But Im scared. If this day were every day, I could work. But Im up at 2:30am, and my mind and body feel good enough to write this. There is always a price. And that price will be any productivity when I crash, and for several days later. Probably tomorrow. But maybe this will last. Im hoping it does.

And of course, I have all this energy, and I cant focus on anything  This may SEEM put together, but I come back and add and take things as I come and go to other things. Thats probably one of the worst parts. That and the misplaced rage. Thats what I hate about this disease. Plans? I cant make plans. If I dont push myself to my breaking point, I cant do anything. I cant work. I cant go to school. And Im terrified every day of talking to people. I havent talked to some people in months. Im AFRAID to. Why? Lots of reasons. Only some rational. IDK. I just wish I could get someone to listen. I even wrote Jay Inslee, the WA governor. Not even a big EFF YOU.

Its pouring outside. Sounds so nice.

I just wish I could escape. Not just for me, but for everyone around me. I hate being so goddamn useless. And thats what I am. Useless. Im a wage slave, and because of it I cant do anything I can ACTUALLY do. In an ideal situation, I can work when I can, form home. But thats ideal. Not reality. And the longer I stay underemployed, the further I fall behind.

No wonder my family wont speak to me. Im useless.

The doctors dont care. They have all but said those words. So if I can get a few good UFCs, maybe I can get teh warden to raise an eyebrow. Because the system doesn't care that Im a prisoner of my own body. I got a day furrow, and Im tempted to keep going. To supplement this with my steroid pills. Its so hard being an addict to something your body makes too much of, especially when there is no on/off switch. For one day, I got to see what a semi-normal life might feel like. It wasn't my first taste, but it was just as sweet. Everyday, I loose hope of that every again.

Did anyone see the warden?

The Wired Weary Zebra

Tumor strikes unsuspecting bystanders

So a good friend decided to come see us after many months of fellowship over the phone and online, and check out the Seattle scene. We got him situated on Saturday, then took the day to rest, as we were all exhausted. Sunday, we decided to surprise him with a trip up Mt. Rainier, as Mrs. Zebra and I could share driving. Our good friend even paid for gas! Was a great trip!

Yesterday, I casually took him around Downtown Seattle, and had a great time. Very tired, but so much fun. But unfortunately Mrs. Zebra stayed behind and cleaned the house for our guest. But she wore herself out. She was ready for bed, and unfortunately had a bit of a hormone explosion and misunderstood what was to be a quick stepping out as an exit for the evening and let loose. He thought it was his fault and now is considering leaving early. I fucking hate this disease. It's why we have such few friends.

How sick am I?

So for the last five days, I have been home off work. The office where I work was closed Wednesday through Friday so I had to tack on two extra hours each day for 5 days before. Those extra two hours killed me. I was barely treading water.

To a healthy person, this wouldn't be a problem. I have a two hour commute, mostly by ferry and bus, and minimum walking. Well, maybe just over a mile, most of it down hill. But for me, it's the hardest thing I have ever had to constantly endure. Just getting to the ferry winds me, and if I don't make the first bus after work, by sprinting over half a mile in 5 minutes, the I have to sprint 5 blocks down a 50° incline to make sure I don't miss that ferry.

The work also wears me out. I have to repeat the same script to people, most of whom are either idiots, jerks, or don't remember who we are or that I am a human and not a robot. By the time I get home, remember two hours each way, I can barely peal myself out of the car, or string together sentences. Mrs. Zebra has had to feed me dinner before because of how exhausted I am.

I'm really scared of what is going to happen to us.

Long time, no see...

Hey all. How have you been?

Im sorry its been so long. A lot has happened since I last posted. Mrs. Zebra lost her job, and to be closer to my doc in Seattle, we scrimped and scraped and barely made it up here. Just in time for the huge budget cuts to happen to social services. So we are in line to fill out paperwork to get in line to see a doctor. Mrs. Zebra is really sick, but we arent 100% sure what with. Her skin is thinning and her hands and feet are always in pain. I thought that I could go back to work and for the last month I have been commuting 2hrs one way to get to a part time job that makes just over minium wage. So after this month, we will probably be evicted. But maybe someone can help us out. Check out the video below and see if you can help.

The very weary zebra.

TOO stressed out!

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

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

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

Dejected

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

Posted via email from The weary Zebra: Zebra Snippets

5 Weeks Post Op

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

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

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

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

Posted via email from The weary Zebra: Zebra Snippets

Fireworks

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

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

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

Posted via email from The weary Zebra: Zebra Snippets

Communication Disconnect

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

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!

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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Lil' Buddy

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

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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The Zebra Wife has something to say!

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

The Weary Zebra

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