the journey of a Cushing’s survivor

About two weeks ago, I met with a new endocrinologist in Seattle to continue my recovery care from Cushing’s syndrome. At the time, I was still on prednisone (a really small does - 2mg/day). The thing was, the prescription for prednisone was written by my endocrinologist in Portland and I forgot to ask my new endo for a refill prescription. So when I ran out, I thought what the hell, I’m just going to see how I feel without steroids. The first 4 or 5 days were great, I mean G-R-E-A-T. No aches, no pain. My energy level was up a little. WOW, I’m finally making progress.

During my first visit, my endo performed an ACTH stimulation test to see how well my one remaining adrenal gland was working. Then yesterday, I had a follow-up visit with my new endocrinologist and he gave me the results from the ACTH stimulation test.

I told him I’d been off prednisone for more than a week and for the most part, I was feeling pretty good. Although, I had now started having aches in the evening and had a couple of episodes where I felt really light-headed. But all in all, I was really glad to be off steroids.

Since my body had responded relatively well without prednisone, I was hoping it would be a sign that my adrenal glad was working at a higher level.

My endo had hoped my cortisol range would have been closer to the double digit range after the ACTH stimulation. No such luck. In fact, I’d barely made any progress since June. Before the stimulation test, my cortisol level was 5mcg/dL. After the stimulation, it was 9mcg/dL. Well, that sure put a damper on things. My body is so damn slow to recover. RARRR.

I can feel the aches trying to creep on more frequently, but I’m trying to keep them at bay. One day at a time, right?

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A recent article The difficulties of Cushing’s syndrome from Endrocrine Today sheds new light on the number of people suffering from Cushing’s syndrome and how important it is for doctor’s to recognized the symptoms so they can accurately test for a positive diagnosis.

I encourage anyone who is seeking more information about Cushing’s to read the article below.

For as long as it has been described, Cushing’s syndrome has presented physicians with a problem. Harvey Cushing first described it in 1932, and the diagnosis, differential diagnosis and treatment of Cushing’s have remained a major challenge for endocrinologists ever since.

Though uncommon, it is difficult to consider Cushing’s syndrome a rare occurrence. New research has shown Cushing’s syndrome to have a substantially higher prevalence than previously thought. Unexpected endogenous hypercortisolism may occur in 0.5% to 1% of patients with hypertension, 2% to 3% with poorly controlled diabetes, 6% to 9% with incidental adrenal masses and 11% with osteoporosis and vertebral fractures.

“We are gaining an appreciation that Cushing’s is more common than it was once believed to be,” said Mary Ruppe, MD, endocrinologist at the University of Texas Health Science Center at Houston, and program committee chair of the Women in Endocrinology organization. “This fact points to the need for data regarding the value of the different diagnostic approaches and for data regarding treatment/outcomes in populations with Cushing’s.”

As most of the characteristics of Cushing’s are common in the general population, including obesity, depression and hypertension, it is extremely difficult for endocrinologists to decide on who should be screened for the disorder. A recent clinical review by Hershel Raff, PhD, and James W. Findling, MD, noted that as the number of patients in these high-risk groups continues to increase, the need for a sensitive and specific diagnostic test for Cushing’s syndrome has become paramount.

The three most commonly performed diagnostic studies for Cushing’s syndrome — urine-free cortisol, low-dose dexamethasone suppression test and the nocturnal salivary cortisol — are also not without hurdles. All three have been shown to produce false positives and false negatives.

Approximately 80% of patients with Cushing’s syndrome have an adrenocorticotropic-secreting neoplasm from a pituitary tumor (Cushing’s disease) or a nonpituitary neoplasm, and the treatment of Cushing’s disease remains challenging for both endocrinologists and neurosurgeons as well. Transsphenoidal surgery is currently the standard treatment of choice in patients, but achieving surgical remission has been difficult as well.

“Cushing’s syndrome is a very rare but important diagnosis for the patient and endocrinologist. Confirming the diagnosis may be challenging, and before embarking on a costly set of tests, the endocrinologist should be reasonably assured that the patient indeed requires diagnostic exclusion by rigorous screening methods,” said Shlomo Melmed, MD, senior vice president of Academic Affairs at Cedars Sinai Medical Center, Los Angeles, and an Endocrine Today editorial board member.

With more than 7.5 decades of research since Dr. Cushing’s discovery, what are the best methods of diagnosis and treatment for Cushing’s syndrome? Endocrine Today talked with leading researchers in the field to uncover the current trends in Cushing’s syndrome treatment.

Screening process

Laurence Katznelson, MD, associate professor of medicine and neurosurgery at Stanford University, and medical director of the pituitary program at Stanford Hospital and Clinics, explained to Endocrine Today the difficulty of deciding who should be screened for Cushing’s syndrome. For instance, although the syndrome is associated with multiple comorbidities, including obesity, hypertension and depression, endocrinologists should be prepared to delve a little deeper into the symptoms to see if they warrant a screening test.

“The presence of Cushing’s syndrome should be considered if these medical conditions are present, though diagnostic testing should be performed only in subjects who have signs favoring Cushing’s, such as demonstration of objective proximal weakness, spontaneous ecchymoses and violaceous striae,” Katznelson said.

“For example, central obesity with supraclavicular and dorsicervical fat pads would favor a diagnosis of Cushing’s syndrome, in contrast to the presence of generalized obesity,” he said.

Raff and Findling noted in a recent clinical review that endogenous cortisol excess also leads to fairly specific catabolic effects — including the thinning of the skin with easy bruising, abdominal striae, poor wound healing, immune suppression, rib fractures, hirsutism in women, acne and muscle wasting leading to proximal muscle weakness.

“There is no clear guideline,” said Roberto Salvatori, MD, associate professor of medicine in the division of endocrinology at Johns Hopkins University School of Medicine. “You need to keep your mind open.”

“Sometimes Cushing’s is obvious. Sometimes, when it is mild, it may not be diagnosed for many years. One must screen a lot of patients to find one with Cushing’s. However, anytime a physician thinks about the possibility of a patient having the disease, work-up should be initiated,” he said.

Testing options

Opinions varied when Endocrine Today asked researchers which of the three tests for Cushing’s syndrome was most reliable.

“No test is 100% sensitive or specific,” Salvatori said. “I always use two, sometimes three, screening tests.” However, Salvatori noted he feels the night-time salivary cortisol test is the most reliable and easy to obtain.

Raff and Findling described the measurement of free cortisol in a 24-hour urine collection as being long considered the gold standard for the diagnosis of endogenous hypercortisolism. The test relies on the concept that as daily production of cortisol is increased, the free cortisol filtered and not reabsorbed or metabolized in the kidneys will be increased. They noted that current research has shown that many patients with mild Cushing’s syndrome do not have elevations of urine-free cortisol, “making it a poor screening test for this condition.”

The low-dose dexamethasone suppression test relies on the concept that the correct dose of dexamethasone will suppress ACTH, and cortisol will release in normal patients while patients with corticotroph adenomas will not suppress below a specified cut off. Raff and Findling noted that because of the significant variability of the biological behavior of corticotroph adenomas, research has shown that neither the overnight 1-mg dexamethasone suppression test nor the two-day low-dose dexamethasone suppression test appears to be reliable using the standard cutoffs for serum cortisol.

According to Raff and Findling, there is no diagnostic test used in the evaluation of Cushing’s syndrome that performs better than the late night/midnight salivary cortisol method. The concept is based on the fact that patients with mild Cushing’s syndrome fail to decrease cortisol secretion to its nadir at night. However, they still acknowledged that many factors, such as stress, sleep disturbances and psycho-neuroendocrine may falsely elevate nocturnal cortisol secretion.

“Because each of these tests has associated false positives and negatives, a combination of these tests is often necessary for a valid diagnosis,” Katznelson said. “In the end, these tests need to be considered in the context of a history and physical examination that favors this diagnosis.”

Lynette Nieman, MD, associate director of the Intramural Endocrinology Training Program at the NIH, agreed. “Of the three recommended tests, each is useful in certain conditions,” she said. “I try to stress that the testing should be individualized since some tests are likely to be falsely positive in some situations, eg, a woman on birth control pills is likely to have a high corticosteriod-binding globulin, which might elevate serum cortisol.”

Ruppe said the choice between the tests should be based on patient characteristics that will allow for adequate collection of each sample. “For instance, the use of a late-night salivary cortisol measurement would be suboptimal in an individual who works the third shift and may not have an intact circadian rhythm, or the choice of a 24-hour urinary free cortisol may be suboptimal in an individual with urinary frequency or urinary incontinence.”

Ruppe also noted that one possible improvement would be to improve standardization of the assays across different labs. “Since there is no standardization, the quality of the performance of the assay can vary across different facilities and centers,” she said.

Petrosol sinus sampling

Another controversial topic in the field is whether or not the inferior petrosol sinus should be sampled for an ACTH gradient to distinguish between Cushing’s disease and occult ectopic ACTH syndrome.

The invasive procedure has proven to be relatively safe when performed by experienced radiologists, but not all medical centers have the capability.

A woman with mild hypercortisolism, a normal or slightly elevated plasma ACTH and normokalemia has an approximately 95% likelihood of having Cushing’s disease before any differential diagnostic testing is performed, according to Raff and Findling. In contrast, a male patient with prodigious hypercortisolism of rapid onset, hypokalemia and marked elevations of plasma ACTH may be more likely to have an occult ectopic ACTH-secreting tumor.

About half of patients with ACTH-secreting microadenomas are estimated to have a normal pituitary MRI. In such situations, it is important to perform further testing, particularly an inferior petrosal sinus catheterization, to discern the presence of an ectopic ACTH-producing lesion, according to Katznelson.

“Some people would say that every patient should have it because it is the one best test for the differential diagnosis of ACTH-dependent Cushing’s syndrome,” Nieman said. “However, patients in whom data strongly suggest Cushing’s disease might forego it.”

“In a young woman with an MRI with a definitive adenoma and high-dose dexamethasone test showing less than 60% suppression, it is reasonable to proceed with surgery,” Salvatori said. “But even the International Prostate Symptom Score is not 100% sensitive or specific.” Raff said that he disagrees with the high-dose dexamethasone test.

Transsphenoidal surgery

Currently, transsphenoidal surgery is the primary treatment of Cushing’s disease associated with an ACTH-secreting pituitary tumor. According to recent studies, remission rates after transsphenoidal pituitary microsurgery range from 42% to 86%.

Raff told Endocrine Today that the most important treatment recommendation that an endocrinologist makes to a patient with Cushing’s disease is referral to a neurosurgeon with extensive experience.

“Referral to a neurosurgeon who is highly experienced in this procedure is critical,” Katznelson agreed. He noted that there have been studies demonstrating that both the degree of tumor bulk resection and rates of biochemical remission are increased for all types of pituitary tumors when the surgery is performed by a neurosurgeon with extensive experience in endonasal pituitary surgery.

“In Cushing’s disease, this is especially true,” Katznelson said. “Because the tumors in this disorder are often small, if not microscopic, the surgical strategy may require dissection through the gland. In inexperienced hands, this may result in higher rates of hypopituitarism and lower rates of biochemical cure,” Katznelson said.

“There is no doubt that the surgeon’s experience influences the success rate,” Nieman said.

Constantine Stratakis, MD, with the National Institute of Child Health and Human Development, said he agreed, and stressed the importance of confirmation of diagnosis of Cushing’s syndrome prior to a referral to a neurosurgeon.

“There is nothing worse than an inexperienced surgeon operating on a patient with Cushing’s or a surgeon operating on a patient who does not have a firm diagnosis of Cushing’s syndrome,” Stratakis said.

“Surgery offers a reasonable chance for cure in the hands of an experienced neurosurgeon,” said Amir Hamrahian, MD, a staff physician at the Endocrinology Institute at the Cleveland Clinic. “We are currently involved in two studies looking at new medications for medical treatment of patients with Cushing’s syndrome. However, surgery is still the best initial approach for those not cured,” Hamrahian said.

The future

“Medications are the future for patients with inoperable, recurrent Cushing’s syndrome,” Stratakis said, referring to pasireotide (SOM230), a somatostatin analog.

He was part of a study in 2006 examining the in vitro effects of SOM230 on cell proliferation in human corticotroph tumors. Researchers found SOM230 significantly suppressed cell proliferation and ACTH secretion in primary cultures of human corticotroph tumors. They concluded that SOM230 may have a role in the medical therapy of Cushing’s disease. Raff said he believes that clinical trials in patients with Cushing’s disease who used SOM230 were not particularly successful. Anne Klibanski, MD, director of the neuroendocrine clinical center at Massachusetts General Hospital and primary investigator of the study, commented that in vitro studies play a critical role in assessing novel targeted pituitary tumor therapies. It is only in rigorous clinical trials that the overall efficacy and risks of such therapies can be established, she suggested.

“Microsurgical improvements will also be significant, but the major problem right now is the number of patients who are left untreated with recurrent disease,” Stratakis said. “For them, there are very few options other than irradiation, so innovative medical treatments with molecularly designed compounds or targeted to specific receptors and/or functions of the pituitary are the most important advances that I see coming in the near future,” Stratakis said.

According to James Liu, MD, assistant professor of neurologic surgery at Northwestern University Feinberg School of Medicine in Evanston, Ill., the future appears bright in the battle against Cushing’s.

“Technical advances in surgery including endoscopic pituitary surgery and pseudocapsular dissection can improve surgical outcomes,” Liu said.

Katznelson said he hopes the future will bring improved diagnostic strategies important for detecting true Cushing’s syndrome in the presence of multiple comorbidities. He noted that the ongoing research studies involving innovative medical therapeutic strategies that target the corticotroph adenoma itself, or block the effects of cortisol in the periphery, should bring new treatment options in the future.

“These studies will hopefully lead to novel medical options for this syndrome,” Katznelson said. “There have been significant advances in surgery, particularly with the development of minimally invasive, endoscopic surgery that has resulted in both improved biochemical outcomes and patient tolerability.”

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It was this time last year that I finally pushed myself to see my doctor to have tests done to see why I couldn’t loose weight, even though I was working out with a personal trainer 3 times a week. It was this time last year that I learned there was a real reason as to why I was so sick - it’s name was Cushing’s.

I can remember so clearly the day I saw my long-time family doctor. I’ll never forget her and will always be grateful that she saw the signs that lead to my diagnosis of Cushing’s syndrome. I was wearing a light wool sweater, with stretch knit gauchos and my knee high leather boots. My hair was chin length and full of cork screw curls. My face was so flush, it looked like I had painted two red circles on my cheeks. My eyes looked like they might burst out of my head. And they were blood shot and looked like I hadn’t slept in days (and the funny thing was, I hadn’t slept in days). I can remember sitting down on the examining table, rolling up the sleeve of my sweater so the nurse could take my blood pressure. I could feel sweat rolling down my back. Damn, I was so hot. I kept wondering if everyone else in the building was this hot - or was it just me?

I turned to my right as the nurse took my pulse and saw my reflection in the mirror on the wall. OMG - was that really me? Was that how I really looked? I hardly recognized myself anymore. What was happening to me?

After the nurse took my blood pressure and pulse, she got very quiet and said she needed to get my doctor so she could take my blood pressure. Huh? I didn’t understand. My doctor returned and she took my blood pressure - and took it again. Would someone please tell me what the hell is going on?!

“Well Kristin, I’m concerned, your blood pressure is 180/90. I need to run some tests. And I need to get you started on blood pressure medication today.”

Holy shit. Holy shit. Holy shit. That’s what kept running through my mind. But I’m fit, I swear I’m fit. I work out with a personal trainer and I’m a fitness instructor. I eat healthy. I don’t understand. My doctor assured me that she would find out what was going on and that I shouldn’t worry. Yeah right. So she put me on blood pressure medication and I waited through the Thanksgiving holiday for her to call with my test results.

I was at work, in my office when my doctor called me with preliminary results - she thought I might have Cushing’s, but she wouldn’t be able to give a formal diagnosis until I underwent more testing. When I hung up the phone, I just sat there - absolutely stunned. I’d never heard of Cushing’s. What was this, was it cancer? How could this be happening, I was barely 30 years old? All my life, I’d taken such good care of my body. It was from this point forward that I began my long journey of researching and learning about Cushing’s.

Now almost a year later, I’ve recovered from surgery that removed my right adrenal gland that was destroyed by a 3cm benign tumor. Recovery has been long and hard. Much harder than I could have ever imagined. There have been days when I thought I would never be free of pain or when I thought I’d lost my youth forever. I’m happy to say those days are long gone.

For each milestone in my recovery, I like to reflect back on the progress I’ve made and it makes me feel grateful for how far I’ve come.

This time last year, I felt horrible. I was trapped inside a body that was physically shutting down. This year, it’s a different story. I’m no longer taking hormone replacements, I’ve reclaimed my body and I feel really, really good. Every day, it’s a work-in-progress.

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OK fellow Cushies, let’s face it, we all have moments when we feel like we’re carrying the weight of the world on our shoulders or we’re faced with never ending obstacles. Just simply living with the after effects of Cushing’s is enough to make me what to stick my head in the sand and cry ’til my eyes bleed (although, I’m proud to say those moments are now far and few between).

When I’m having a good day - and feel like a normal person - I try to push myself to take advantage of the things that make me feel good. And I thought I’d share some of them with you in hopes of creating a positive atmosphere, rather than dwelling in the negative (we already have too much of that).

• Read my favorite blog Dooce - the author, Heather Armstrong, is a mother of one (soon to be two) kids and in equivalently shares her most personal, intimate details of what it’s like being a mom. She’s bold, blunt and absolutely hilarious.

• Watch What Not to Wear - When I got sick with Cushing’s, I completely lost my personal style and resorted to frumpy clothes because that’s all I could find that fit. Well guess what, that’s simply not true. I just didn’t know how to find clothes that fit my new body. What I really like about this show is they show you how to find your personal style for every body shape. So instead of hating my closet, I’ve taken to heart some of the tips and tricks from Clinton & Stacey and now have a renewed love for clothes.

• OK, this next one is for ladies only (sorry guys). For the longest time, I had a poor self-image spend as little time as possible in front of the mirror. Now that I’ve come out of my shell, I love to experiment with new make-up. Life’s too short to not have a little fun with color. E.L.F. has fabulous, fun make-up for only a $1 - yes, only one dollar! And if you use these coupons, you can save even more.

• Make an appointment with yourself to do something that you really enjoy, whether it be for an hour or an entire day. I know that sounds funny, but it really works. When I was sick, I withdrew and felt very isolated. Most of all, I stopped doing things that were just for me. I’m a mom, a wife and have a full-time job that’s demanding, so there’s little time left for me at the end of the day. So my husband and I worked out a schedule where we trade off who takes my son to school and who picks him up after school. On the days I don’t pick up my son, I make an appointment with myself for an hour to do what ever I want - maybe catch up with a friend after work or work on something creative. What ever it is - it’s just for me.

• Stretch. Yes, I know, I can already hear what some of you might be saying. It does wonders for your body, along with your state of mind. Before getting sick with Cushing’s, I worked out on a regular basis and was very diligent about making stretching apart of my workout routine. As a result of Cushing’s, I lost most of my muscle, along with my flexibility. I’ve started to incorporate stretching into my nightly routine. Although I may not be back in the gym, I’m slowly making my way back there - it’s all about baby steps.

There will always things out of your control to worry about or to make you feel unhappy. What counts is what you do with those things to find what makes you happy.

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I’ve been in a reflective mood lately. As it gets closer to the holidays, I’m reminded of the good times (and bad ones) my family and I have enjoyed during the Christmas break. It’s the one and only time of year that our family comes together from near and far to spend a week with each other.

This holiday season is an important milestone for me - and my family. Last year, at this time, I was under going testing to find out what the hell was making me so sick. Shortly after Thanksgiving, I learned that I had Cushing’s syndrome and had no idea of the struggles that lie ahead. I think I was at my sickest during Christmas. I was so bloated and swollen. I felt like the Pillsbury dough boy - ready to POP. My face was very swollen and my eyes looked like they were going to explode. I can remember looking out the window and seeing it a light snowfall outside and but my body felt like it was inside a sauna, I couldn’t stop sweating.

It was at this point, I came to realize that Cushing’s had not only made me sick, but my family sick as well. Because of Cushing’s, I became difficult to live with. My family had no idea what was wrong with me, but ultimately, they were the ones who had to live with it day in and day out. My husband didn’t understand why I could only sleep 3 or 4 hours a night. I became short tempered, isolated myself and could NEVER sit still. I didn’t know how to shut my body down and rest. There was a laundry list of things that caused tension and stress in our house.

My family could see me struggling, but they were helpless to do anything. My husband took on many of the household responsibilities and became the primary caretaker of our son. There was distance growing between me and my husband, along with my son. It wasn’t anyone’s fault, we had become victims of Cushing’s.

A lot has changed over the past 12 months since being diagnosed with Cushing’s and it’s been a hard road to get here. As I’ve slowly recovered from Cushing’s, my family has begun to recover from my absence and has welcomed the old Kristin back into their lives. The most difficult adjustment has been with my son, who recently turned 5. In all honestly, I was for the most part a figure in the background for the last 3 years leading up to my diagnosis. I had missed out on a lot of activities with my son because I was ill. The bond between my son and husband became stronger and my husband became the go to parent of choice. That was tough, really tough.

Now, almost a year later, the relationship between my son and I has gotten stronger and there is more balance in our household. I make an effort to be active with him and he loves the time we spend together. In fact, just last weekend, all three of us went to our neighborhood park and I played on the playground like I was a kid again. It felt great.

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I’ve been anxiously waiting two weeks to meet with my new endocrinologist. I had fears of him telling me that something else was wrong with me or that nothing was ever wrong with me. I know, I know - totally irrational. It’s hard not to feel that way when I spent so much time trying to explain or convince previous doctors that something was wrong with me.

Then on top of that, I worried if I would even like him. Would he be personable? Would he listen to my concerns or blow them off?

As soon as he entered the room, I felt at ease. He treated me like real person - not like a chart that would occupy 30 minutes of his morning. He wanted to know first hand from me how I was feeling rather than using old test results to dictate how my recovery was or was not progressing. I’m a firm believer in treating the patient as a whole. The mind and body work closely together in the healing process.

We talked about the different medications I’m taking (prednisone, synthroid, prozac, mirtzapine & dexedrine - unrelated to Cushing’s) and a possible course of action to eliminate most of them from my daily regiment. That was music to my ears. It’s no fun having to carry a make-up bag full of medication with me where ever I go.

I asked him what his thoughts were on my recovery progress - particularly my non-weight loss. Overall, he thought I was right on track, that recovery (including weight loss) can take 1-2 years. He said something else that really home. A significant weight gain as a result of a hormone balance can be very difficult to loose. I’m probably not be one of the lucky ones that looses it naturally once the hormone imbalance is fixed. Damn it, that’s not what I wanted to hear.

But deep down inside, I’m glad he said it. Before getting sick with Cushing’s syndrome, I was fit - I worked out all the time and had done 2 triathlons. I really enjoyed setting a goal for my body to accomplish. And I haven’t done that in a really, really long time.

I think it comes down to a mind/body balance. I’ve been so consumed with the health of my body, that I’ve lost my mental balance.

Not anymore. Cushing’s has controlled my body long enough.

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I haven’t seen my Portland-based endocrinologist since I moved to Seattle more than three months ago. Turns out the 3+ hour trek to Portland from Seattle just wasn’t in the cards for me.

Initially, I was uneasy about finding a new doctor. But as the weeks have passed and I’ve settled into my new surroundings, those fears have subsided. What I wasn’t prepared for was how difficult it’s been switching doctors. I’m sure many of you can empathize.

I did a fair amount of research for endocrinologists who specialist in adrenal disease / Cushing’s and found one that I wanted to make an appointment with. Turns out I can’t even make an appointment with this doctor until my previous endocrinologist sends over my records. Then it took my previous endo two weeks to finally get my records faxed to the new endo. Come on people, HOW HARD IS IT TO FAX PAPERWORK? I think snail mail would’ve been faster.

I now have an appointment scheduled for Nov. 14th to meet with this new endocrinologist - and I’m scared as hell. What if this new endo blows me off? What if he says nothing is wrong with me? What if he says this is as good as my recovery is going be?

For the most part, I try to stay positive about the progress I’ve made in my recovery. But still feel like something is off with my body. Here’s a list of the things I’m still struggling with.

• swollen ankles (without socks or with loose fitting socks)
• visible hump on the back of my neck
• full, sightly bloated stomach
• inconsistent sleep (some nights I sleep well with no sleep aid, others are very restless with no sleep aid)
• difficulty getting a deep breathe when laying down in bed (I can breathe just fine, just not a deep breathe)

I thought I would’ve had more relief from these symptoms by now. Maybe I’m being impatient. But how do I know when recovery ends and problems begin? Will I always struggle with these symptoms?

Can anyone of you shed some light on this? Have all of your symptoms gone away since being in recovery? If not, what do you still struggle with?

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A dear woman by the name of Martha lost her battle with Cushing’s disease this past Sunday. She suffered unnecessarily for years, going from doctor to doctor, receiving one incorrect diagnosis after another. Just as she received the correct diagnosis of Cushing’s disease, it was too late. Please the read the full story on Robin’s blog Survive the Journey.

I urge all of you to become your own advocate. Be persistent with your doctor. Don’t take no for an answer. This is your body, your life - fight for it!

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I’ve finally worked up the courage to post a couple of pictures of myself to show the effects Cushing’s has had on my body. Cushing’s does strange things to a person’s body, things that you can’t control. Because our society equates anorexia to beauty, a body that falls outside that stigma is often looked down upon and made to feel an outcast.

I can personally attest to to this stereotype. Before getting sick with Cushing’s, my body fit into those ideal standards. I ate well, I exercised and my body reflected it. But when Cushing’s took over, my looked abused and uncared for - even though I was eating well and exercising. I had become one of those people. You know what I’m taking about. And you know what, people I didn’t know and even some people I did know started treating me differently. In their eyes, I had let myself go. What they didn’t know was that I was probably eating healthier and exercising more than most of them.

This had a devastating effect on me. I began to feel ashamed of my body. It just wasn’t fair. I had been so good to my body and now it was turning on me.

Even after I was diagnosed with Cushing’s and there was an answer to what had happened to my body, I still felt ashamed of the scars that covered my body. But as the months have passed and I’ve grown into my new skin, I have begun to make peace with my body. It’s the only body I’ve got and we’ve been through a lot together.

fat deposits on back of neck left behind from Cushing's syndrome

9 months post-op, scars from adrenalectomy

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To this day, I still struggle with what’s considered normal. I’m often tired and need a lot of down time when I’m not at work. I feel a tremendous amount of guilt because I don’t have the same stamina as the people around me. It’s not because I don’t want to be active and do things, it’s not because I’m lazy, it’s not because I’d rather lay in bed - it’s because I’m truly tired. It’s weird because it’s not one of those things you can will yourself to do. It’s a very physical thing.

My family for the most part has come to accept this about me and when I say I’m tired or I need to rest, they do what they can to accommodate that. It’s people who are on the out skirts of my inner circle that have a hard time understanding why I don’t have the energy to do the things I used to do. Just about all of my friends know that I had Cushing’s and they have seen first hand what is has done to me. But it’s hard for them to understand why surgery hasn’t cured me - why I haven’t gone back to the way I was when I wasn’t sick. That’s really hard to explain to someone who hasn’t gone through this or lived with someone who has.

My level of guilt was at its highest just before I had surgery - when I had to decline invitations for just about everything. As my recovery has progressed, my guilt has subsided some. I think it’s because I’m coming to terms with my body can and can not do. I can’t feel guilty for what I can’t do - I need to feel good about what I can do.

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