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:
Love peace, blessings, and solidarity!
The Weary Zebra