Emotional Blackmail and Cushing's

For those of you who know me personally, you probably know how hard the last month has been. If not let me give you a recap:

Two good friends of Mrs. Zebra and I broke up and one is living with us while they each figure out life without the other. The person staying with us is also chronically ill. She has fibromyalgia and severe migraines, among other things. We have a small sickie commune going on. Mrs Zebra and I both have been in and out of hospitals lately. I'm testing to confirm that the first surgery was not successful, and the last week, Mrs Zebra has been fighting a MRSA infection in her foot from an infected blister. Mix this with a new schedule with commuting the both of us that work, and it's not been exactly a restful time.

What you probably don't know is the other friend hadn't been taking this breakup kindly. He is also suffering from an illness, but I am not qualified to speak about it. Over the past month, he has been harassing our new housemate and to a lesser degree, both of us Zebras. But it's draining what little energy I have.

At first, I saw it as lashing out at her, and then us, for the break up and perceived "taking of sides". I won't get into details because it's not important. Suffice it to say that it's happening only from his end. But the threats on us keep happening. The calls at all hours, the text messages that say things like "well, you aren't answering right away, so I guess we aren't friends anymore" all hours, I mean the man doesn't get that I have a chronic illness, and have to rest or sleep every chance I get. Today, I realized he doesn't care.

This morning, we all were treated to a stressful morning where he was doing it again. He wasn't even letting me use the restroom or get dressed, which both can take considerable energy and time. And stress makes me worse. It makes me more sick. To have to worry about what kind of text message or phone call it is, makes me sick to my stomach.

You can't treat people this way. That's goes for anyone. You can't emotionally blackmail people into giving you attention and expect keep them around. It just doesn't happen. But to do it to people you know can't handle it, that takes either someone who really needs help, or is so beyond caring for people that it isn't worth the time or energy investment to find out.

And if you are reading this, and any of this rings a bell, here is a message straight to you: understanding goes both ways. I understand you are lonely and hurt, but a) its not my god damn fault, b) its not fair to take it out on sick people, and c) keeping it up isn't helping anybody. You have to understand that I don't have many friends because of this disease. People choose not to understand what's going on with me. They judge me for my lack of energy, my lack of social skills, my lack of money, my lack of anything else that makes them want to be friends. If you feel that you are one of these kinds of people, then I'm sorry but I cannot spend so much time and energy propping up your low self esteem if you wont or cant reciprocate. I just cant. I don't have the energy to properly take care of myself. If I spend energy on you, you have to do the same. You cannot expect to get positive results by emotionally blackmailing people, especially ones that are limping along as it is. And your actions have made us very worried about coming over. I'm not sure what you will do.

Now, if you feel you can properly give and take and handle an adult-like relationship with people, then not only will this work out, but I want to be that friend myself. I understand you are hurting. I understand that feeling, like sinking into a hole of worthlessness. I understand what its like to not have enough energy to wipe yourself in the bathroom, let alone get out of bed to do so. Understanding goes both ways. 

No one really wants to be alone all the time. And no one really has to. But lashing out isnt the answer, and for me, at least, I cant handle it. I'm too sick. And I don't have to. We can still be good friends. We can still work together. But that is really up to you. That's what we want. 

Specifically to our friend, you are a smart guy. One of the smartest I know. But I can only spend so much time trying to convince you to sober up from the funk you are in, and realize that. I'm too sick. And for that, I am sorry. 

The Emotionally Drained Weary Zebra

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.

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

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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!

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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

See and download the full gallery on posterous

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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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Nightmares

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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Zebra Snippet 10: Sleep

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

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Wanna know what Cushing's Affects?

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

Zebra Snippet #3 or 4?

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

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Day For Night

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

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

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

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

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

Zebra Snippet 3: Brain Fog

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

The Weary Zebra

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