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. 

Letter to the new Governor!

I wrote and mailed this letter in to Governor Pro-tem Inslee and emailed his campaign. Hopefully, he can pull some strings to help us. 

Dear Mr. Inslee

Let me first congratulate you on your victory of being elected as the new governor of the great state of Washington. I was really pulling for you, and the fact that you are our governor makes us feel much better about living here. My wife and I, as well as several people we know in Tacoma, canvassed and worked for your campaign the last few months either knocking on doors or making calls to voters. We hope that you will kick some butt as out governor. 

The reason I am writing to you is that I am in need of your help. Before I get too far into that, let me tell you about myself. My wife and I recently moved here from Texas to be close to my doctors here. On December 30th, we will have been here one year. I have a rare disease called Cushing’s disease. It is, usually, a tumor in one’s pituitary gland that makes your body produce excess cortisol which effects every system in the body. As you may or may not know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands and is vital to regulate the body’s cardiovascular functions and metabolism, to boost the immune system and to fight inflammation. But its most important job is to help the body to respond to stress. The adrenal glands release cortisol in response to stress, so athletes, women experiencing pregnancy, and those suffering from alcoholism, panic disorders and malnutrition naturally have higher-than-normal levels of cortisol.

People with Cushing’s Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of “fight or flight,” which ravages the body and tears down the body’s major systems including cardiovascular, musculo-skeletal, endocrine, etc.

Symptoms vary, but the most common symptoms include rapid, unexplained weight gain in the upper body with increased fat around the neck and face (“moon facies”); buffalo hump; facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoporosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding and steroid-induced acne.

Attached, you will find a sketch of a typical Cushing’s patient. As you can see, the effects of the disease on the body are dramatic.

Worse, the psychological and emotional effects of having a chronic, debilitating and disfiguring disease range from distressing to demoralizing.

Imagine that, in the space of a year, you became unrecognizable to those around you and to yourself. You look in the mirror, but the person staring back at you is a stranger. You endure the stares and looks of pity from those who knew you before Cushing’s, fully aware that they believe you have “let yourself go” or otherwise allowed this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying and resolve to live your life in a stranger’s body. While I have been living with this my entire life, this still affects me because I have lost family that went from accepting me to thinking I was lazy, fat, etc. 

You feel increasingly sick, but when you explain your array of symptoms to your doctor, you are dismissed as a depressed hypochondriac who needs to diet and exercise more. Worse, your family members think the same thing — and are often quick to tell you how you need to “change your lifestyle” to overcome the effects of what you eventually will discover, once properly diagnosed, is a serious and rare disease.

If only it were so simple! No one would choose to have Cushing’s. Those of us who have it would not wish it even on our worst enemy.Most people with Cushing’s long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher.

One of the worst parts about this disease is the crushing fatigue and muscle wasting/weakness, which accompanies hypercortisolism. Not only do we become socially isolated because of the virilzing effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.

Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing’s patient. Holding down a job has been difficult, especially with the economy like it is. So in 2010, I had surgery at Swedish Medical Center in Seattle. I flew from Texas to find a cure. Instead, I found that it can get much worse. The pitutary is the command center hormone wise, and I am missing almost 3/4 of it, trying to remove a tumor that as far as we can tell is still active. After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body’s production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.

Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people’s adrenal glands never return to normal, and those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions.

The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy and extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles and bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can’t feel the effects of the muscle-wasting and bone deterioration because of the anti-inflammatory action of cortisol. Upon weaning, however, these become painfully (literally!) evident.

The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue (”like a wet cement blanket laid on top of me”); weakness and exhaustion; nausea; headache; vomiting; mental confusion. It is imperative for people who are on replacement steroids after Cushing’s surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possibility of adrenal insufficiency in the event of an adrenal crisis.

People who have struggled with Cushing’s Syndrome all hope to return to “normal” at some point. Though none of us want to have Cushing’s, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing’s symptoms within a few years of surgery or other successful treatment, and a good quality of life can be achieved. But regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor and lead to shortened life expectancy and diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism. Recovery to this point has been grueling. So we moved up here thinking that we would be closer to people who understand the situation and a better social safety net. 

While both are still very true, especially compared to Texas, we are not doing so well. My wife, Kaylie, also cant work due to a nerve issue with her hands and feet but is getting the help she needs thanks to the doctors we are now able to see. But we are still on the verge of homelessness. I worked what I could during the summer, but was fired, and even though it wasn't gainful employment I was denied disability because of it. I don't qualify for unemployment benefits, and my wife’s is about to run out. On top of that, DSHS keeps requiring us to turn in paperwork that either doesn't exist, they already have, or they wont specify what they need. Thats just so we can get $50 a month in food stamps and maybe get me Medicaid. 

We are struggling just to make sure food is on our plates and all the bills are paid. 

Governor Inslee, we need your help. Is there any way you can intervene in my disability case on my behalf? Or help us get more aid for medical and food? We aren't looking for handouts, but how is anyone supposed to heal so they can get back to work when they have to constantly worry about where their next meal is coming from? We are down to one meal a day to make what we have last as long as we can. I don't want to live on disability. I want to work. I want to help make this state as great as it can be, but with the symptoms still present, and the stress of every day life making them worse, if something doesn't happen soon I wont be around in a year or two. Between my condition and the poverty, this will kill me. But if this doesn't kill me, I want to enter politics and serve the people of Washington just as you have. Please, if there is anything you can do for a 28 year old who worked on your campaign, for someone who is being discriminated against by a system rigged to do so, please do it! 

If you would like to read more about this debilitating disease, please go to:

www.cushing-help.com

or my blog:

http://wearyzebra.blogspot.com

Thank you.

Love peace, blessings, and solidarity!

Sincerely yours,

The Weary 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

7 weeks post op

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

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

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

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

The Weary Zebra

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

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

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

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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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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Is Blood Thicker Than Water?

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

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

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

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

Back to work...

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

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

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Official Diagnosis and Surgery

Well, I got the call today....

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

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

His pauses as SOOOO long...

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

long pause

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

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

So, here we go again....

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Loosing More Hair

The misses found this last night, because she loves gazing starry eyed into my eyes, that I am loosing more hair. This time, it is my eyebrows.
My hair is patchy, so now I wear a hat. And she started loosing her eyebrows a few years back. Thats she she started her PCOS symptoms that no treatment is helping (hmmm, wonder why?) and the doc then said it was her thyroid which no meds are touching either. So at this rate, I will be completely hairless by the time I am 30.
Thanks Cushing's. I didnt need any self confidence...

Brandon Ivey
Post Production
Capture the Market
214.905.4331 ext.2719
brandon.ivey@capturethemarket.com

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The Zebra Wife has something to say!

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

The Weary Zebra

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Cushie Camp Day 5

Here is the conclusion of my trip to Dr. Ludlum's Camp Cushie. I do have one more video from that week to post in relation to Cushing's, but I will have to do that tonight/tomorrow. For now, here is Day 5. S

The Weary Zebra

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Zebra Snippet #9: Cushing's Awareness Day

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

(...G.I.Joe!)

The Weary Zebra

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Zebra Snippet 6: Alone

I think its #6 anyway. Im not looking right now. Probably have 10 #6s up there right now. It shows how stupid I can be. This is what I wanted to talk about. The depression. I think I mentioned it in an earlier one, and if so don't bother reading this one. A reader told me on twitter that I have inspired her to blog. Well, Im glad it helped someone. I try. Sometimes I dont think I make any sense, or make any difference. I feel so alone sometimes. Like right now. My cortisol is high, I know that, but my hormones are crazy and I feel so down. Like I am alone in the world. Like the people online are so far removed, and my family doesnt understand or is avoiding me because of my illness. I just want to die when I get this feeling. And the only thing that gets me through the day is the knowledge that its hormonal. Its hard to remember with any kind of rational thought that all the feelings are wrong. That people do care about you. That your skin will stop crawling, that the cat that you see isn't really there, that the nightmares will one day stop. Its hard.
This is to anyone that finds my blogs helpful in any way: Make a comment if you can. A little feedback goes a long way. 21 days until I go to Dr. Ludlum's Cushie Camp. I just want the elephant off my chest and to feel human again.

The Weary Zebra

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Cushings and Hair Loss

Just thought I would share what Cushing's can do to your hair. No, not make it blue, but the blue dye shows how blotchy the hair loss is. It isnt typical male pattern baldness. That, and the fact that this is age 25, and it started when I was 13, shows this isnt typical. You can see more on my photo page.

The Weary Zebra

Wanna know what Cushing's Affects?

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...