Shackled by my Sentence.

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

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

I didnt sleep well at all last night.

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

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

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

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

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

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

Its pouring outside. Sounds so nice.

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

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

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

Did anyone see the warden?

The Wired Weary Zebra

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

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

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

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

Posted via email from The weary Zebra: Zebra Snippets

Nightmares

Not all Cushies I have talked to have experienced this, but many have. It seems that in some Cushing's patients, when cortisol is high and the patient is able to sleep deep enough to dream, they can have horrible nightmares. These nightmares are fueled by the cortisol and what it does to your mind and emotions. It already wreaks havoc on your body and daily emotions, and one's ability to sleep soundly. But these nightmares can border on real. I had one last night that was so real, I was actually depressed most of the morning. Most of the time, I don't dream. When I do, it usually is a nightmare. And when I have them, I usually wake up screaming or crying.
The saving grace is that even though I wake up just as or more stressed than when I laid down, my wonderful wife is there to greet me on the other side. If you know a Cushie, today give them a hug. Not too hard, but hard enough. We don't want any bruising.

The Weary Zebra

Posted via email from The weary Zebra: Zebra Snippets

Zebra Snippet 10: Sleep

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

Posted via email from The weary Zebra: Zebra Snippets

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...

Day For Night

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

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

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

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

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

Purple Rage

...You Wouldn't Like When I'm Angry."

 Well, I dropped off my 24hr UFC this morning, asured that both tests would be done: Cortisol and 17OHC. I was praying all day while trying to stay awake that the numbers would come in high and I would get a diagnosis. I didn't think they would be in so soon...

I got and email that they were in so I logged into the hospital's site and low and behold there it was. I read over the numbers at about 6pm and quickly posted them online for other Cushie's to desypher. About 7pm, someone comments that it is missing a crutial hormone: Cortisol. The make-it or break-it cause of my own personal hell. So I quickly logged back in on my phone while going to the movie ticket counter and I had missed that the test was for THE WRONG HORMONE! I quikly shot the endocrenologist an email and went into the theater to enjoy the flik.

Two hours later, I am ticked.

My pulse is high, I am agatated. I didnt enjoy the last 30 min of the movie and dont feel like myself. I usually annalize the heck out of most films, but had forgotten all about it with this change of emotions. I went into the restroom and quickly appoligized for my comments online about how the doctor Freaking cheated me. But thats how I felt. I felt so cheated. I quickly walked out of the restroom and I wanted to throttle the next person I came to, I was so ticked! And I had vissions of kicking the crap out of several people around me and.....I stopped. I thought, this isnt right. So I went back into the restroom and since no one was in there, I lifted my shirt...

Purple

Purple dots

Purple Stripes

PURPLE RAGE!

The color of my dots and marks told me everything I needed to know. And I looked at my phone and saw it was after 9pm. Im getting high. High on cortisol. The hormone that @#$%^&*! doctor didn't order a test for! WTH!? Ooohhh, he should be SO #$%^&* glad he wasn't there....

Needless to say, it was an intesting drive to Chili's after that. Tunnel vission down the freeway. I was aggated, focused but oblivious to anything else. My frustration at why I was frustrated (cortisol) and how stupid it was, made me MORE frustrated! I felt like I was an aderline junkie (technically I am, causes the pains apperently, when I dont have it) and I was getting my fix! But, not in a good way. I want to sleep, but cant. So, purple rage continues. Thankfully, my doting wife understands and knows Im not mad at her. Im just mad. And agated. And its not my fault. Or the doctor's fault WHO DIDN'T ORDER THE F$%^&* TESTS I ASKED FOR! No, its the cortisol. So I "rest" in solice knowing what the heck is wrong with me.

At least, one thing.... can't fix crazy...