the journey of a Cushing’s survivor

I apologize for the long lapse in posting. Now that I’m 2 & 1/2 years Cushing’s free and for the most part fully recovered, I’m finding that Cushing’s no longer consumes my mind the way it used to. There are days when I think back to the months (and years) I suffered in agony with Cushing’s and it’s feels like a distant memory. The person I was 2 & 1/2 years ago is so different from the person I am today.  I’m not really sure when this shift started to take place. Perhaps it’s just a natural evolution of the healing process - slow & subtle and before you know it, you’re in a completely different place.

My journey with Cushing’s began in 2003 when I was pregnant with my son and began to develop symptoms in my last trimester of pregnancy. By the time my son was born, my symptoms were full-blown and my health took a downward spiral. Over the next 4+ years, I tried my best to compensate for the body that was failing me - it was a battle that I was slowly losing with each day that passed.

During the first 4 years of my son’s life, I felt like I missed out on being the mother I had always yearned to be because I was so damn sick - fatigue from insomnia, aches & pains throughout my entire body, hot flashes, the inability to sit still because of cortisol surges…the list goes on and on.

My son was almost 4 & 1/2 when I finally got a diagnosis of Cushing’s syndrome. My journey back from recovery took a solid 18 months and during that time, my son continued to get older and I became less & less capable of being the active mother I so wanted to be for him. I spent many days and nights in bed, in pain and exhausted wondering if I would ever regain some sort of normalcy in my life. I was only 31 damn it and it felt like I was being cheated out of my youth.

Fast-forward two years later…

Through many ups and downs - 3 different doctors since my surgery, moved to a different state, started a new job, ended a long-term relationship, began a new relationship, all the while raising my son and trying to live my life - I’ve made it over to the other side. I recently celebrated my 33rd birthday and feel better than I have in YEARS. I’m no longer limited by the physical state of my body - I can bike, work out, do hot yoga, relax & meditate, I can chase after my soon to be 7 year old son - I no longer have to tell my son I can’t do something because my body hurts. I feel like I’m able to be the mom I’ve yearned to be but couldn’t because I was hindered by Cushing’s.

Words can’t describe how grateful I am to have my body, mind and spirit healthy. Every time I work out or doing anything that requires a little extra from my body, I’m reminded that what my body has accomplished is a gift.

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It’s been just over two years since I had surgery to remove my right adrenal gland that had developed benign tumor as a result of my 4 1/2 year battle with Cushing’s syndrome. For those who’ve experienced Cushing’s first hand, you know all the many ways this disease destroys your health and your body. For most of us, our health can be regained slowly over time. But the physical tolls Cushing’s takes on one’s body results in horrendous scarring & loose skin and it’s something we continue to live with, long after we’ve been cured. Even when all the weight has been lost, there’s no amount of exercise or dieting that can reverse stretch marks or over-stretched skin.

Over the past two years, I’ve learned how to dress my post-Cushing’s body - accentuating the positives and hiding the flaws. But there are still times that I find it impossible to dress my body without feeling (and looking) fat and frumpy. I”m happy to say that those days are far and few between.

The major issue that I continue to struggle with - especially as my body has shed the weight and begun to reshape itself - is accepting and coming to terms with what I see in the mirror, no clothes to hide behind - just me. I feel like my outer body isn’t a true reflection of who I am and all the hard work I’ve done to get to this point.

So I’ve been exploring the option of plastic surgery to restore some of what I lost from having Cushing’s. And I feel some what conflicted. On the one hand, I feel like I should come to terms with what I do have and accept my body the way it is. But there’s a big part of me that yearns to have a body that doesn’t look like it’s been through the war zone. I’ve given myself until next year to make a final decision.

I’d love to know if any of you have contemplated plastic surgery and if you have, what was your final decision?

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The Cushing’s Partner Program on meetup.com recently celebrated it’s one year anniversary. We are now 71 members strong (which is amazing considering Cushing’s syndrome effects approx 1 in 500,000), with new members joining every week. Because the Partner Program has been so successful on meetup.com, I extended it to Facebook and we now have 96 members (and still growing every week).

The idea to start the Cushing’s Partner Program stemmed from my desire to create a place for patients and survivors of Cushing’s syndrome to connect in a personal & meaningful way. One of the common threads that most of us feel during our illness and on the road to recovery is isolation. More often than not doctors aren’t familiar with Cushing’s or they’ve never seen an actual case in their practice, so their insights about the challenges of recovery are usually limited and family & friends have a hard time understanding the full impact & long-term ramifications of this disease and we’re left feeling alone to fight an uphill battle.

The Cushing’s Partner Program allows patients in the early stages of diagnosis & recovery to partner with someone who’s farther along in the recovery process (usually about 6+ months post-surgery). Who better to understand all that you’re going through than someone who’s been down that road. And better yet, can give you some insights on what to expect in the coming months of your recovery.

It’s the members who make this group successful - survivors who take the time to reach out to those who are just starting their recovery journey from Cushing’s and those who are strong enough to reach out in search of a connection that will hopefully ease their isolation.

For me, this is not only a celebration of one year passing but a celebration of people coming together to share & support one another in the journey of recovery. Cheers!

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Over the past year or so I’ve been slowly changing to an organic diet - not because it’s the latest fad but due to two subtlety pivotal moments in my life recently. 1) My ever-growing awareness & research about the hormones, chemicals & antibiotics put into our food and it’s link to health problems & obesity. My concerns are not only for my own well-being, but more importantly my son and 2) watching the movie Food, Inc. has forever changed the way I think about food - period.

As I continue to get healthier and stronger in my recovery from Cushing’s syndrome, I’ve also become more acutely in tune with my body. I’m not much of a meat eater (although I do love Aidells chicken apple sausage) because it reeks havoc on my stomach. And I’m sensitive to a few other foods as well. I’m not a picky eater and up until recently, didn’t really think much about certain foods not agreeing with me.

About two months ago I came across a book that changed my life and my views on food & diet. It’s called Eat Right 4 Your Type by Dr. Peter D’Adamo.

“Blood type is “the key that unlocks the door to the mysteries of health, disease, longevity, physical vitality, and emotional strength.”… the practical application of the blood type “key” is that it enables you to make informed choices about your dietary, exercise, supplement, and even medical treatment plans.”

This book isn’t a diet, it isn’t restrictive - it’s provides an overview on the origin and history of each of the 4 blood types and provides detailed lists of the types of foods that work (and don’t work) well with your body based on your blood type. It also encourages users to seek out foods in their most natural, organic state.

Since reading this book and adjusting my diet based on my blood type, I have more energy, I’ve lost more than 15lbs, don’t suffer from gas & bloating and am left feeling full & satisfied when I finish a meal. If I’m feeling this good after just two months, imagine what I’ll feel - and look like - in six months?

By incorporating these changes into my diet in no way means that I won’t ever eat a cheeseburger again - or pizza - or ice cream. What it has done is given me a new perspective and a new set of tools to make healthier choices for my body and the way I live. Maybe it will for you too?

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Do you have symptoms of Cushing’s syndrome and feel like you’ve reached a dead end with your doctor because you don’t know what tests to ask for? Unless you’re lucky enough to be working with a doctor who’s familiar with recognizing the symptoms associated with Cushing’s and has had experience diagnosing Cushing’s, your doctor may or may not pursue the all tests necessary to confirm or deny a diagnosis of Cushing’s syndrome.

More often than not, testing for Cushing’s isn’t an open and shut case. It usually takes a combination of tests, with some of them being repeated more than once because levels can vary depending on the time of day or where a patient is in their cycle. Plus, not every patient will test positive on every single test. Everyone’s body is different and individual normal levels will vary. Some patients will present with off the charts levels of cortisol and it’s an obvious red flag, while others will present with the high end of normal to slightly elevated and both patients can be equally as sick. So if Cushing’s is suspected, it’s important to not let one single test or one negative test result close the case. If your doctor refuses to continue testing after only one test or a single negative test result, do yourself a favor and find a doctor who will. It’s your doctor’s job to help you get to the root of what’s making you sick. You can find a list of patient recommended doctors who specialized in diagnosing and treating Cushing’s syndrome here.

The most common test doctors will start with to screen for Cushing’s is to administer a 24-hour urine collection for urinary free cortisol excretion. There are some drawbacks with the test though. A large percentage of people with Cushing’s will have elevated levels of urine free cortisol, but some Cushing’s patients don’t test high and will actually have normal levels of urine free cortisol.¹ So it’s important to not use the 24-hour urine collection as the only determining factor to screen for Cushing’s.

Another widely used test for screening for Cushing’s is the low-dose dexamethasone suppression test. A synthetic steroid is administered that is supposed to suppress cortisol production to very low levels. For a majority of patients with Cushing’s, cortisol levels won’t drop. But there’s a small percentage of patients with mild Cushing’s and as a result their cortisol levels will be suppressed, resulting in a negative test.

The late night salivary cortisol test is considered one of the most sensitive screening tests for Cushing’s. Elevated cortisol between 11:00 p.m. and midnight appears to be the earliest detectable abnormality in patients with this disorder. Cortisol secretion is usually very low at this time of the day, but in patients with Cushing’s syndrome, the value is virtually always elevated. Although this is a relatively new test, it is currently the most widely studied single test for the diagnosis of Cushing’s syndrome with at least eight independent studies from all over the world demonstrating sensitivity of 93-100% for the diagnosis of Cushing’s syndrome.² The salivary cortisol test can be administered by your local hospital or can be completed with an at home kit. You can ask your doctor about which option is best for you & your needs.

If the results still prove to inconclusive, the dexamethasone CRH test can be helpful because some patients have high levels of cortisol but don’t develop the full-blown effects of Cushing’s syndrome. These patients may have pseudo-Cushing’s syndrome, a condition sometimes found in people who have depression or anxiety disorders, drink excess alcohol, have poorly controlled diabetes, or are severely obese. The dexamethasone-CRH test can distinguishes pseudo-Cushing’s from mild cases of Cushing’s.³

I know many of you have come across this information while searching for information about Cushing’s online and if you’re not familiar with the various tests, it can be overwhelming. I’ve provided links with additional information for all the tests I mentioned and hope it helps you to navigate the options & process of testing for Cushing’s syndrome.

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I wanted to let all of you know about the Pituitary Symposium being held in Seattle. I went to a similar symposium last year and found it to be incredibly insightful and had the opportunity to meet other Cushing’s patients & survivors.

If you plan to attend, please send me an email at kristinwalldesigns@gmail.com so we can plan to meet at the conference. I’d love to meet each & every one of you!

The Swedish Hospital is hosting the third annual Pituitary Symposium: “A Patient’s Road Map to the World of Pituitary Disorders” on Sat May 8th from 9-5pm. The 2010 conference will provide a comprehensive overview of pituitary disorders including an in-depth review of different pituitary diseases, a review of current disease management and updates on surgical and medical management options. The internationally recognized faculty presenting at this conference were chosen for their area of expertise related to the diagnosis and management of patients with pituitary disorders. Patients and caregivers will also have an opportunity to participate in a one-hour breakout session to talk with other people affected by these conditions.

Date: Saturday, May 8, 2010

Location: Swedish Medical Center, Cherry Hill Auditorium
550 17th Avenue
Seattle, WA 98122

Time: 9:00 a.m. – 5:00 p.m.

Fee: $50 per person - Breakfast, lunch and snacks provided; scholarships available

For more information or to register by phone: 206-386-2502

Go here to register online.

AGENDA

8:15 a.m. Registration Begins/Continental Breakfast

9:10 a.m. Welcome - William H. Ludlam, M.D., Ph.D.

9:20 a.m. Nonfunctioning Pituitary Tumors - Mark E. Molitch, M.D.

10:00 a.m. An Overview of Acromegaly - William H. Ludlam, M.D., Ph.D.

10:40 a.m. Break

11:00 a.m. Advances in Pituitary Radiotherapy - John H. Suh, M.D.

11:40 a.m. Medical Treatment Options in Cushing’s Disease - Anthony P. Heaney, M.D., Ph.D.

12:20 p.m. Lunch

1:10 p.m. Patient Small Group Discussions

2:10 p.m. Medical Therapy for Pituitary Tumors - Ashley B. Grossman, M.D., FRCP, FMedSci

2:50 p.m. Surgical Treatment Options for Pituitary Lesions - Marc R. Mayberg, M.D.

3:30 p.m. Break

3:50 p.m. The Role of the Pathologist in Pituitary Patient Management - Sylvia L. Asa, M.D., Ph.D.

4:30 p.m. Medical Management of Prolactin Secreting Pituitary Tumors - Roberto Salvatori, M.D.

5:10 p.m. Closing Comments - William H. Ludlam, M.D., Ph.D.

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When I was diagnosed with Cushing’s syndrome and it was determined that I developed it during the third trimester of my pregnancy, I pretty much decided right then and there that my dreams of having more children were out of the question. It took 4 1/2 years and three doctors before I was diagnosed with Cushing’s syndrome and once I had surgery in Jan. ‘08 to remove the 3cm tumor and my right adrenal gland, it’s been a long, hard road to recovery.

Just as the memories of the pain from labor and delivery fade over time, my feelings of not wanting to get pregnant again and risking Cushing’s have started to lessen and I’ve actually allowed myself to think openly about having another baby. Apart of me is willing to take that leap of faith and risk developing Cushing’s again because the outcome of a baby far exceeds what may lay ahead. But the rational, must control everything side of me says why push my luck? I have an amazing son (he’s 6 1/2) who’s healthy and the light of my life. Plus I’m just over 2 years into recovery and finally feel really good and have been able to reclaim my life in a deep and meaningful way.

So for now, I’m committed to not being committed to a decision. I’m doing what I do best - research, research, research. I’ve asked every doctor I’ve worked with since being diagnosed with Cushing’s syndrome if I will get Cushing’s again if I get pregnant for a second time. Their answers have been mixed. Some have assured me that the chances of me Cushing’s developing during a second pregnancy are slim to none, while others have said they can’t give me a definitive answer because doctors haven’t been able to determine the root cause of what causes some women to develop Cushing’s during pregnancy. Neither answer is very reassuring.

So I’ve decided to take to the Internet in search of case studies, medical journals and articles that will give me insights and information about developing Cushing’s again with a second pregnancy. Unfortunately there’s limited information online, mostly due to the fact that Cushing’s developing during pregnancy is extremely rare. In fact one study in 2004 cited that fewer than 150 cases in the world literature have been reported. So far I’ve only found one, two, three case studies online about women who developed Cushing’s during a first pregnancy, were successfully treated and cured, then became pregnant again and developed Cushing’s with the second pregnancy. I can hardly make an informed decision based on two case studies, so my search for information continues.

If you know of or have read any information about developing Cushing’s again with a second pregnancy, please use the comment section and share your information with me.

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For those of you who live in and around the Virginia area, I wanted to let you know about the Pituitary Days patient conference at the School of Medicine Univ of Virginia on April 16, 2010. To learn more about the conference and to register, please visit the Pituitary Days 2010 Conference home page.

If you live in the area, I would encourage you to attend the conference. It’s a great opportunity to meet other Cushing’s patients and survivors face to face, plus hear from doctors who specialize in this area of medicine.

One of own Cushing’s Partner Program members will be attending the conference. If you’d like to meet up with her at the conference, please send me an email using the contact form and I’d be happy to put you in contact with her.

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A couple of weeks ago, one of my Cushie friends - who also happens to be a nutritionist - gave me recommendations on some vitamins, supplements & natural detoxes to help me feel more balanced in my Cushing’s recovery. So I took her up on some of her suggestions and have felt a vast improvement (and it’s only been 5 days). I’ve been working on a holistic, natural approach for some time now and these latest additions are great because 1) no prescriptions are necessary - I can pick up my vitamins & supplements at the drug store or get them online and 2) no need to make additional trips to & from the doctors office.

I thought I’d share some of my regimen with you for those of you who may be curious and may want to add it to your own regimen.

• Women’s multi-vitamin
• Vitamin D 1000 IU (bone heath & helps to increase immunity & reduce inflammation)
• Fish Oil 4800 mg (ultimate heart & brain heath - helps with concentration, mood, anxiety & depression)
• Calcium/Magnesium 250mg/80mg (1 tablet in the am & 2 just before bed - helps with sleep)
• Pine Bark Extract 100mg (super antioxidant & helps with ADD/ADHD)

I’d love to hear about your regimen of vitamins, supplements or other remedies you use post-Cushing’s to help you feel balanced. Please use the comment form below to share your comments, thoughts & ideas. I’ll be doing a follow up post sharing everyone’s input & feedback.

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It’s hard to believe it’s been a whopping 24 months since I went into recovery from Cushing’s syndrome. For those of you who are also on the path to recovery, you know all to well about the many ups & downs we face every day. 2009 proved to be a year filled with more triumphs than disappointments. I’d like to share a brief year in review with all of you.

Jan 2009 - Kicked off the year feeling pretty good. A lot of my post-Cushing’s symptoms started to diminish. Started a regular workout regimen.

Feb 2009 - Started experiencing hot flashes again, but subsided by summertime. Began writing about patient advocacy.

March/April 2009 - Launched the Cushing’s Partner Program support group on meetup.com. (currently 55 members strong!)

May 2009 - Still experiencing memory lapses and having a hard time maintaining long-term memory.

June 2009 - Started gaining some weight back and had severe food cravings. Decided to switch from a traditional endocrinologist to a naturopathic doctor.

July 2009 - Had a complete workup on the function of my neurotransmitters and discovered that I was still very unbalanced. Began a new regimen of natural supplements.

Aug 2009 - Tried hot yoga for the first time and started going on a regular basis.

Sept 2009 - Began weening off prescription meds.

Oct 2009 - Invited to participate in the 2nd Annual HealthBloggers Award competition. Began feeling run down and having insomnia. The Cushing’s Partner Program support group launched on Facebook.

Nov 2009 - Test results show my thyroid is acting up and went back on synthetic meds.

Dec 2009 - Synthetic meds aren’t working well, decide to switch to a natural thyroid hormone. The HealthBloggers Award competition ends, My Battle With Cushing’s Syndrome wins Best 100 and comes in at #17.

I’m starting 2010 off pretty strong. My energy level is good, sleep is great, food cravings are gone and my weight has stabilized. But I’m having some knee and hip pain. My workouts have dwindled over the past two months, so I’m hoping that getting back to the gym will help build my strength and the pain will start to dissipate.

My goal in 2010 is to stay symptom free - continue eating healthy and working to make my body stronger that it’s been in years.

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