Dear friends and family:
I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome & the recovery process so that you will have sufficient information to form realistic expectations about me & my ability to engage in certain activities in light of this disease and its aftermath. As you know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands & is vital to regulate the body’s cardivoascular functions & metabolism, to boost the immune system & 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 atheletes, women experiencing pregnancy, & those suffering from alcoholism, panic disorders & 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 & tears down the body’s major systems including cardivascular, 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 & face (“moon facies”); buffalo hump; facial flushing/plethora; muscle wasting in the arms & legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms & breasts; poor wound healing & bruising; severe fatigue; depression, anxiety disorders & emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure & high blood sugar/diabetes; edema; vision problems; premature osteoperosis; &, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding & steroid-induced acne. Imagine that, you became unrecognizable to those around you & even to yourself. You look in the mirror, but the person starting back at you is a stranger. You endure the stares & the 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 & resolve to live your life in a stranger's body. You feel increasingly sick, but when you explain your array of symptoms to your doctor(s), you are dismissed as a depressed hypochondriac who needs to diet & exercise more. Worse, your family members think the same thing-and are oftern quick to tell you how you need to "change your lifestyle". "You just need to get out more", or "You really need to get back to exercising" or "It's just your nerves" or "You need to perk up & do this or that", "you just need to change what you are eating"and many, many more well meaning statements... to overcome the effects of what you finally discover, once properly diagnosed, is a serious & 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.
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.Amen!!, So many times I work so hard to try to get up to go to church that by the time I simply take a shower or bath, I'm shaking so bad, my head is hurting so bad, I'm so dizzy that I have to lay down before passing out. Then end up having to stay home unable to go. Which is greatly upsetting.
How do we explain to you what it’s like to watch our lives slip away? What response is sufficient to express the grief & frustration over losing so much of ourselves? It is often difficult to find the strength to explain how your well-meaning words of prompting & encouragement (to diet or exercise) only serve to leave us more isolated and feeling alone. Though we wouldn’t want it, we wish our disease were as well-understood as cancer so that those who love us would have a frame of reference for what we go through. With Cushing’s, there is such limited public awareness that we are left to describe the effects of the disease from a limited understanding from those who love us most, which is disheartening.The most frustrating misconception about this disease is that we somehow are “doing this to ourselves,” or delaying recovery because we need to continue steroid replacement or lack the energy to excercise often, which is sadly false. Trust me that we would love to have that much control over such a terrible disease.It would be great to have any kind of control over this disease.Fortunately, there is a good likelihood of remission from Cushing’s in the hands of a skilled pituitary surgeon. Unfortunately, the long-term remission rate is only 56%, meaning that 44% of people with Cushing’s will require a second (sometimes third) pituitary surgery, radiation or bilateraly adrenalectomy to resolve the hypercortisolism. Without successful treatment, Cushing’s leads to death. Even with successful treatment, I will have to be monitored for possible recurrence for the rest of my life. 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, & 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. Oh, how I pray, & pray the surgery works & does not reoccur. The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy & extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles & 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 & bone deterioration because of the anti-inflammatory action of cortisol. I've had it so long, I already have severe joint, muscle & bone pain. 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 & 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 possiblity 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, & a good quality of life can be achieved.It isn't good to know there is a tumor in your brain, but at the same time I'm so thankful to have a real diagnosis & to be able to tell people it is a real disease & you are not CRAZY!!
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 & lead to shortened life expectancy & 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.We now know, due to my years & years of severe systems that this disease has already caused my body many severe health problems. So of which will be unable to reverse due to the long-term hypercortisolism. The one thing I find myself saying, at times, is "If only the doctors would have found this years & years ago when I started having severe health problems. I've been having severe problems since my teen years. But then I have to calm myself , take some deep breaths and pray. And simply take the time to be thankful that we now have a diagnosis. It's a struggle at times, but my life is a journey, that even though I can't see the end result. I know that God sees the whole picture, while I only see the brief here and now.
The best support you can give someone who is suffering from Cushing’s or its aftermath is to BELIEVE them and to understand that they are not manufacturing their illness or prolonging recovery. Ask them what they are able (& not able) to do, & then be prepared to help them in ways that matter — whether that be to bring them a meal or help them to run errands, pick up prescriptions from the pharmacy or clean their house. Because it’s these little everyday tasks, which can fall by the wayside when someone has (or has had) Cushing’s, & these are the things we miss the most: doing for ourselves. Ask us questions about the disease, & then actively listen to what we say. We know you don’t know much about Cushing’s — even our doctors sometimes lack information about this rare disease. But know we appreciate the interest & will tell you everything you want to know, because those of us who have it necessarily become experts in it just in order to survive.
Thank you for caring about me & for hearing what I am saying in this letter. I know you love me & are concerned about me, & I appreciate that so much. Thank you also for taking the time to read this letter. I look forward to discussing further any questions you might have. In the meantime, I am attaching a brief article written by a woman who recently was diagnosed with Cushing’s. I hope hearing another person’s experiences will help you to understand what I’m going through so that when we talk, we will be coming from a similar starting place.
This letter is for patients to provide to their family & friends in hopes of providing a better understanding Cushing's & it's many aspects.
A person with Cushing's may feel better at times then at other times. It's common for a Cushing's patient to have burst of energy & then all of a sudden they become lethargic & don't feel like moving a muscle. There are many symptoms that are associated with Cushing's. They include weight gain, fatigue, muscle weakness, shortness of breath, feeling achy all over, headaches, blurred vision, mood swings, high blood pressure, stretch marks (straie), buffalo hump, diabetes, edema & the list goes on. Hormones affect every area of the body. It is important to note that not all patients have every symptom. Even some hallmark symptoms, such as straie or the "buffalo hump", may not be noticable on every patient. Not everyone who has Cushing's will experience the same symptoms, treatment, or recovery. Because not all "Cushies" have these symptoms, it makes diagnosis even more difficult.
Cushing's can cause the physical appearance change due to weight gain, hair loss, rosacea, acne, etc. This can be very disturbing when looking in the mirror. Changes in appearance can often cause the Cushing's patient to withdraw from family & friends making it a very lonely illness. Patients often feel alone or withdrawn because few others understand.Cushing's can affect affect anyone of any age although it is more commen in women. Cushing's patients need to be able to take one day at time & learn to listen to their bodies. There will most likely be times when naps are needed during the day & often times may not be able to sleep at night due to surges of cortisol. Your Cushie doesn't expect you to understand Cushing's Syndrome completely. They do need you to be there for them & try to understand to the best of your ability what they feel and not give up on them. Often a Cushing's patient may be moody & say things that they don't mean. If this should happen with your Cushie try not to take it personally & know that it's most likely caused by the elevated cortisol & disturbances in other hormone levels caused by the Cushing's & not from the heart or true feelings of your Cushie.
It can be very depressing & frustrating having so many limitations & experience things in life being taken from you. Cushing's patients are very sick, not lazy, not hypochondriacs or even the newer term "Cyberchondriacs". If a Cushing's patient says they don't feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you. Telling a Cushie to think positive thoughts will not make him/her well, will just be upsetting & aggravating.
Testing procedures can be lengthy & this can become frustrating for the patient & family. Often, it takes a while for results to come back & this can be stressful. Don't look to far ahead just take one day at a time & deal with the situation that is at hand at the present time. After a diagnosis is made then it's time for treatment. Surgery is usually the best treatment option for Cushing's that is caused by tumors. Don't be surprised if the surgeon's facility wants to run even more tests or redo some of those that have already been done. Your Cushie may have to travel a ways to find a surgeon who is trained in these delicate surgeries & who has performed many of them. Once the diagnosis has been made & treatment has finished then it's time for the recovery process. Not all patients who have surgery are cured & they have to make a choice along with the advice of their doctor as to what their next treatment option will be.The recovery from the surgery itself is similar to any other surgery & will take a while to recover. The recovery process obtained from getting a cure from Cushing's is quiet different from other surgeries. A Cushing's patients body has been exposed to excess cortisol, usually for quite a long time, & has become accustomed it. When the tumor is removed that has been responsible for the excessive cortisol & the body is no longer getting it this causes the body to have withdrawal symptoms. Withdrawal can be very hard causing an array of symptoms muscle aches, weakness, bone and joint pain, emotional disturbances and severe withdrawal symptoms such as vomiting, etc. Thank you for reading this & we hope it will help you to understand a little more about Cushing's & the dibilating affect it can have on a person. Thank you for being there & supporting your Cushie during this time in their life. We realize that when a family member has Cushing's it not only affects the individual but other family members & those around them as well. Showing your love & support will encourage a speedy recovery for your Cushie.Thank you all for your love & support. This has not been an easy journey & it is one that is only really getting started in some ways..
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