You dont get it.


Things arent going so well for us. But something a friend left on my VM irked me enough to write. Note: None of what I am about to say has been embellished.

Someone who is perfectly healthy, and owns their own home, told me how lucky I was to have a job (they are unemployed and piddled around until their UI ran out, spent loads on beer and women). Im facing eviction, Im so sick that the 3hr daily commute is literately killing me. I spend about 1/4 of what I DO make on transportation to/from work. And the worst part is HE KNOWS THIS!

I understand depression, I live it every day. Its a struggle physically and mentally to get out of bed each day. So when someone that is COMPLETELY PHYSICALLY HEALTHY tells me that I am "so lucky", its not just that they don't GET IT, they don't care too. I would trade situations with them in a hear beat. Trade being chronically ill with a disease said to be so rare, it doesn't exist, a non-functioning pituitary gland, and the fatigue of a 90 year old man, the bills piling up, the constant fear of homelessness, with that of a fairly healthy, unemployed home owner.I love the guy like family, but c'mon!

Mrs. Zebra's UI ran out and she hasn't been able to find work. Ive been busy either working or doing work at home for people to get my name out there. When I can make my own schedule, I can do some work. But that is hard to tell an employer. We've had some help from good friends, who I like to refer to as "adopted family".

Christmas was rough. I miss my brother, and I think my blood relatives are mad at me. Mrs. Zebra and I had a very quite Christmas yesterday. Just tried not to think about the fact that our first Christmas in our new home might be our last. I have a little work in the pipeline, but it could take until March to pay out. I hate asking for help, from anyone, but we desperately need it. If you can help, it would be much appreciated. If you use paypal, you can click the link on the top, left of this page. Otherwise, if you want to help, send me a message.

The very scared and humble weary zebra.



As I am writing this, my brother is being memorialized back in Texas. On November 12th, 2012 he was in a horrible accident and is no longer with us. Luckily  no one else was hurt in the accident. But he left a huge hole in the hearts of his friends and family. Thanks to this wretched disease, I cant afford to fly back and be there like I should be. Ive been having to stop my steroid taper not only because of the stress of his loss, but of the constant attacks from family that, until Monday, wanted little to do with me. If you have read my blog before, or even know about Cushing's, you know that people dont understand this disease from the outside. And instead of trying to understand, or just being understanding, most people turn to neglect or even hate, to deal with you. Well, thats happening right now.

My brother and I were always closer than we were to our sister. Its not her fault, really. Just circumstance. But after she married and had children, I really tried to get to know her. Even if it were just as friends, I wanted to be part of her life. I wanted my nieces and nephews to have cousins to look after and big Christmas gatherings. But the last 10 years has been hard on everyone. Im chronically ill, our mother died of complications of what I believe was Cushing's, my brother was uprooted and moved out to the country because of financial reasons, and my sister has had to re-establish herself so many times that I wonder if she will ever find a place in her life where she can just let her guard down.

After our mom died, she really came and joined the family again. I know its hard. She only had three families to try to see: ours, her husbands, and her ex's. But at some point my sister decided she no longer wanted to return phone calls or voice mail from anyone from our side. I didnt want to push it, but after months of phone calls from me, my brother, my dad, and even my wife, we all just gave up. She claims it was a technical issue, but I dont know any handset issues that effect the kids cell's too. I still think its something to do with me, but she doesn't want to hear it from anyone so she just cut everyone out.

Thanks to this disease, I cant afford to fly back to Texas to pay my respects to my little brother who died at 23 years old. Thanks to this disease, I have lost the only mother Ive ever known. And thanks to this disease, I have lost my sister. She decided that, instead of talking to me and having a family, she would rather not deal with me. Even in the wake of our brother's terrible accident, she wont call. She writes to me via Facebook, but I wont read her words anymore. They hurt too badly. She knows we tried to call, but still wont call and talk to her brother, who may never recover from this disease.

So I sit here, absolutely lost. I dont know what to do. I want to talk to my sister again, but cant until she wants to. I dont know how to handle this. By all rights, it should have been me. He had his whole life ahead of him, while Ive been sick my whole life. If I had died, no one would have been surprised. It wouldn't hurt this bad. I wish I could fix all this. I wish I could fix our family and have everyone come out to our enchanted forest and have a good time. But how do I get from here to there? I dont know. I mean, Im working on my phone anxiety. This disease isolates you. Some days its all I can do just to be social online, let alone in person. I just wish I could get my sister to understand this. Or anyone really.

I escaped death 3 weeks ago when I went through surgery. But I should have died. My dad escaped death when he survived his motorcycle crash and surgery. So much death. I wish I knew what to do. I just want us to be family again. I love my sister, despite all faults. And I choose my family, and I choose her. Just like my father decided he didn't want me, but my dad did. I just dont know what to do.

Im so lost.

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:
or my blog:

Thank you.
Love peace, blessings, and solidarity!
Sincerely yours,

The Weary Zebra

Falling Apart

Its Halloween today. My favoriate holiday. But, as with all my favoriate things, I can no longer enjoy them. I have been so sick the last few months, I havent had the energy to put up any of the decorations we have. Money has been so tight, that we cant afford to buy candy for the kids who didn't stop by. IN fact, beans and rice it is for our one meal today.

Im so depressed, it is getting harder and harder to get up in the morning. Not wake up, but to get out of bed. I just got out of sinus surgery on Monday. Turns out I had a fungal infection from the pituitary surgery 2 years ago. If we were still in Texas, I wouldn't have had the surgery. You have to be homeless to qualify for aid down there, and if you are homeless, you dont really count. Im still fighting disability, but they are relentless. Even DSHS (Dept of Social and Health Services) wants documents that either dont exist, or they have in their position already. But that is the deal. They grind you down. But today is the last day of my Charity Care at Swedish Medical Center. Maybe I will be able to get it again, but they said its not likely. They dont help indigent people or something.

Mrs. Zebra is cracking through the stress and depression. Im afraid she might leave me soon if something doesn't change. I guess I dont blame her. I am pretty worthless at this point. There used to be a significant section of my day devoted on figuring out what I could do for her next. Now, I cant do anything for her. I cant do anything to help our situation. Im helpless and hopeless. And alone.

The Very Weary and Depressed Zebra

Too tired to cary on...


Its been several months and my followers deserve an update. Ive been so sick and down that there hasnt been much to post.

Summer finally came and went here in Washington state. But it didnt happen without me getting fired from my job at Working America. I was $3 short of my weekly deposit quota. You can read about it HERE.

Ive been trying to get my job back while doing as much freelance work as I can. Mrs. Zebra is still unemployed and still battling many internal demons as well. When I do get work, I get the run around as far as what the client wants, all the settings change, etc. Why cant I just work and get paid?

We are so broke, we cant afford to go and do anything to get our minds off of things. We are eating once a day now too. Not even a big meal. We are slowly starving to death.

In September, I had my hearing for disability and it was post-poned a couple weeks because my lawyer was a hack and didn't show up. The new lawyer found that none of my docs had been helping me at all either, including those at Swedish. My hearing finally comes and the judge is conservative and dosent care that the docs have listed me as disabled, and according to SSI rules I qualify in several categories  Nope. Got the report today.

So on to the next level. If I survive.

Does anyone even give a shit?

Tumor strikes unsuspecting bystanders


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

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

How sick am I?


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

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

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

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

Long time, no see...


Hey all. How have you been?

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

The very weary zebra.