I crushed my ladybug

Thats what her nickname was. Ladybug. Our first night in Seattle, I ran and made a copy of the key to our home, and gave her a ladybug key. She loved that key. I crushed my ladybug. I drove her away. I didnt mean to. Im sick. But I didnt have the tools to control my cortisol-fuled temper. 

Ive been bawling nonstop for an hour. She wont pick up my phone. If she would, Id call her. If I wants afraid of making her mad, I would call her. BUt I am. I need her so bad. And shes gone. The one who stood by me when I was covered in urine and blood from brain surgery. Shes gone. Because the surgery didnt fix me, and because no one gave me tools to fight the mood swings. The most wonderful women in the world left me. 

She took half of me with her, all the good parts. 

Im left in pain, a pain so deep I will never escape. 

I dont deserve to. 

I deserve to die. 

And we have ice on the roads tomorrow. 

convenient, I think. 

One can hope to be sideswyped...

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. 

Nobody's Listening

What day is it? Monday?
I thought it was Thursday.
I thought yesterday was too.
What do you mean I wasn't at work
Yesterday? I thought you said
Yesterday was Sunday, not Thursday?
Is it true?

No, I'm fine.

(The ants crawling over your face
They are supposed to be there.)
What do you mean I don't look good?
(I can barely stay awake, this isn't fair.)
What do you mean? (Did I fall asleep in my chair? )
I haven't got a call since you've been standing there.
Fuck this, 

I'm stepping out

When did the hall become a tunnel?
Just focus. This will all be over soon.
The ants are crawling. Be careful.
Tomorrow you have an interview.
Like that will help.

The stairs are so far down. I'm dizzy.
The ants are following.
The cat is back. Just keep busy.

And I just want to be home again.

Step. Breathe. 

Step, Step Breath
Step. Breathe.
Hold the rail. 

Step. Breathe.

Step, step breath

Step Breathe.
Use the cane.
Step. Breathe 

Step. Breathe.
Hold the rail.
HOLD IT!
sigh
That was close. 

Step
Step. Breathe.
Step. Breathe.
To the bottom
Out the door.

The car feels so far away.
I just need to get there.
Step. Breathe.
Step. Breathe.
I just have to make it
Through the day.
And the next. And next.
Step. Breathe.

I'm still in the tunnel,
Now it's outside.
Nothing looks real.
Pastel colors.
Styrofoam
It's all made of chalk.
The ants look real enough.
(but they aren't)
People are looking at me.
Have I been talking out loud?
Sorry, just thinking out loud
(please someone help me)

Unlock
Get in
Jack in
Crank it up,
Roll them down
I need to wake up
Get the pain down
Inhale
Hold it
Exhale
Hit play

Don't think about the ants.

HONK HONK!
Where am I?
What's their deal?
Why am I driving?
Fuck off ass wipe.
I was at work
Taking a break
Now Im here
Swerving jerks
What day is today?
Thursday
Still? Are you sure?
Ok
Maybe tomorrow will be better.
Maybe the ants will go away
And the cat will follow
And time will make sense
Not like today
And the tunnel will lift
And colors return
And life will fill this man
Or someone will learn
What this is like,
your own personal hell
Where yelling and screaming
And feeling insane
From raging and fighting
And panic are the main
names of the game
That you'd rather play
Because it masks the pain
And gives you energy
And sometimes focus
And clarity to see
Even for a moment,
Before the waves
Of rage and and self hate
Wash over,
That the last few weeks
You were pushing too hard
Killing yourself
Getting charred
And burnt out

And I tell my friends.
They can't help
Most don't understand
And in that pit,
Nobody's Listening

And I tell my family
But few are there
Most chosen
And there happily
But can't help
And in that pit,
Nobody's Listening.

It hasn't been this bad in years.
I'm falling apart.
I'm being dragged into that tunnel
By my worst fears.
And even the doctors join in.
And it feels
And seems
And looks
As if 

No
Body
Is
Listening

The last few weeks, I've been suffering from severe adrenal fatigue. The day I described above actually happened to me recently. I feel like this just takes over and I have been told I don't need extra steroids. That may be true, and I'm sure it is on average, yet my body doesn't know that.
For the past few months prior, I started what is called by some as "rapid cycling". My cortisol highs would happen in the early morning and evening, with two crashes, as it felt. Then, I remember realising that wasn't happening anymore. And my hallucinations were starting back up, with new ones. The ants are new.
I decided to take 5mg of hydrocortisone to help alleviate the symptoms. Two hours later, nothing. I dosed again, another 15, and I felt more normal. This broke the stagnate low, and I'm cycling again. Now I can see what was happening.
The worst part was being suicidal, but not having the energy to act on it. The irony being if I had, I wouldn't be suicidal. But I could have stepped into oncoming traffic, and the thought or dream occurred often. And breaking the stagnation helped me feel more creative, even if it was shit. It is from the heart.

I don't know how much longer I have. I'm scared, and feel like I have no hope.

The Weary and Worried Zebra

Good News Everyone!

Well, last week I saw my new (hopefully) doctor and did a follow up at Swedish. The new doctor is a natureopath who used herbs along with western medicine to treat illness. She wants me to try an herb from India that regulates adrenal function and cortisol. That sounded good until I went to Swedish.

At Swedish, they acted as if they actually believed me. They sent me home with a jug to pee in and told me that they wanted to try me on one of two medicines. Corcept and Signifor.

Here is the catch: I can get Signifor, a $25,000/yr drug, for free if I can prove I am having cushing's symptoms. If I get on Corcept, my health insurance is free. And from what I understand, signifor works better and is more long term. So, I dont know what will happen. NORD wants to cancel my insurance because they didn't tell me I had to be on any medication for the program I am enrolled in. So I will probably loose my access to medical care until I can get approved for charity care, but they don't cover lab work . Which is a big deal seeing as the original testing came to just over $25,000 (everything cushings related must be a multiple of 5) and the surgery was around $50k.

This week also saw two other good things. Well, sort of. A very good couple of friends who were domestic partners ended this part of their relationship and one moved in with us to get back on their feet. I don't transition well, but its been easier with them helping us with bills and house work. Its going to be a good thing. We also finally saw a raise in our food stamps. Substantial raise. I wont get into how much, but we don't have to worry about food for a while.

I cant get hold of the place I was applying for close to home. They wont even return my calls. So Im stuck driving an hour each day and its killing me. But all in all, it was a stressful but good week.

Thanks again for reading!

The Weary, and cautiously optimistic, 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

Latest in my fight...

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!

Posted via email from The weary Zebra: Zebra Snippets

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

Posted via email from The weary Zebra: Zebra Snippets

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

Posted via email from The weary Zebra: Zebra Snippets

Post Op Day 9

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

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

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

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

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

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

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

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

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

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

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

Courage

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

Posted via email from The weary Zebra: Zebra Snippets

Afraid

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

Im afraid my personality might change drastically.

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

Im afraid I will get a Cerebrospinal Fluid Leak.

Im afraid of how I will feel afterwards.

Im afraid I will be an invalid.

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

Im afraid they wont find ANY tumor at all.

Im afraid we will go bankrupt because of my illness.

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

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

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

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

Im afraid of being more lonely than I am now.

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

Im afraid of weening.

Im afraid of being alone.

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

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

Im afraid my pituitary will never turn back on.

Im afraid my adrenals wont ever work right again.

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

Im afraid of my life being so different afterwards.

Im afraid nothing will happen.

Im afraid the surgeon will sneeze during surgery.

Im afraid an earthquake will strike during surgery.

Im afraid of an electrical outage during surgery.

Im afraid I wont be thought of.

Im afraid.

Posted via email from The weary Zebra: Zebra Snippets

Hallucinations

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

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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Cushing's Study Today

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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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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