the journey of a Cushing’s survivor

I recently moved up to Seattle and you know what goes along with moving to a new place - finding a new doctor. UUGGGGG.

The doctor I met today will be my primary care physician - not my endocrinologist. My endo is still in Portland and I wouldn’t trade her for ANYTHING. Yes, I’m going to drive 2 1/2 hours for monthly check-ups. You know how it goes when you meet a new doctor - ‘Excuse me, can you fill out your medical history on these forms’ . Once you look at the forms, you see that there’s only one teeny tiny line for previous illness or surgery. And you think to yourself, crap, I’m going to have to explain my history ALL OVER again. Bring on the questions and scrutiny.

Have you ever felt like you’ve had to convince a doctor of your symptoms to justify why this and why that? Story of my life. Today I was lucky to meet a doctor who openly admitted she didn’t have any experience with Cushing’s beyond her textbook years ago. I thought, Ok points for honesty.

We went thru my history of Cushing’s, starting with when I began noticing symptoms to my current state of recovery. At at a couple of points during our conversation, I felt a little defensive - like I had to justify my symptoms. Those of you who have had a serious illness know what I’m talking about.

I think the most frustrating is that my body has changed all that much yet. I’ve starting loosing the hump on the back of my neck and my face has slimmed down quite a bit (but still has a little way to go). I’m still on a small does of prednisone and for what ever reason, the rest of my body just won’t let go of the weight. Steroids - I’m telling you, they’re a curse.

So I get the laundry list of questions Are you exercising? Are you eating well? What are you eating? All the while, looking at me with this look that says, sure ya do honey. And I just want to scream YES I AM. Well, actually I have a king size Snickers bar in my purse that I’m going to devour when you leave the room and guess what, I have a whole bag of cookies waiting for me in my car. RARRR Did you know that if I didn’t eat anything, I mean NOTHING, I’d STILL look this way? How’s about you try that one on for size. Well, such is life.

Good news is this doctor is only my primary physician, not my endocrinologist.

We Cushies are not alone in these struggles to be understood. Robin who is also a Cushing’s survivor, shared a video on her blog today about getting the word out about the symptoms of Cushing’s. Thanks Robin and let’s keep talking about Cushing’s.

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It’s been almost 3 weeks since my doctor put me back on steroids. F@#$ my feet are swollen - AGAIN. I guess my body isn’t ready to say goodbye to those little hormone boosting pills.

Last night I was at my first live NBL game - the Mariners vs the Devil Rays. Inning 1 and 2, I’m feeling pretty good. Inning 3 rolls around and my feet are starting to feel tight and heavy. By the end of the 4th inning, I looked down at my feet and sure enough, they were starting to look like bricks. By the time the 5th inning started, I decided to head home to ice my feet.

This next morning they’re still a little puffy. I’m suppost to have labs done this evening and an appointment with my endo tomorrow afternoon.

My weight loss has stalled since lowering my steroids…And my energy has started to tank again.

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I have a question for anyone who has recovered or is currently recovering from Cushing’s.

Since having surgery, have you returned to your pre-Cushing’s body weight & shape?

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This week I’ve experienced a real milestone in my recovery from Cushing’s Syndrome - I’ve finally started loosing my fat suit! It’s been six months since I had surgery and I had lost only 7lbs. Most people lose weight very soon after surgery - well, not me.

I think my body has decided that I’ve been put to the test long enough and now it’s ready to give up the fight. In the past two weeks I’ve lost almost 10lbs. I first noticed the change on the morning of my 31st birthday - July 29th. I decided to wear jeans - something I hadn’t been able to do in over a year. I purchased these jeans in mid-June, barely able to fit in them - hoping that it wouldn’t be long until I could fit into them. As I pulled up the jeans, I could almost hear a drum roll in my head OK, READY, SET GO! As I buttoned them, I found I didn’t have to suck in my stomach to get them to close - in fact I had extra room - holy crap, I’ve lost weight! That was the best birthday present.

By the end of the day, those jeans were looking pretty sad and not to mention saggy. Hell, it’s my birthday damn it, I’m going to buy myself a new pair of jeans. I have to say it feels good to wear something that shows by body instead of hiding it. For so long I was restricted to wearing elastic, stretch knit pants because my body was so disproportionate. In honor of my recovery, I think I’m going to burn every pair of stretchy pants I own.

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I’m approaching nearly 6 months post-op from Cushing’s syndrome and have had so many ups & down’s with my recovery from Cushing’s that at times I don’t know if I’m making progress or regressing.

About 2 months ago, I went to my endo to get the results from my bi-monthly blood work to check my cortisol & ATCH levels. I still hadn’t lost much weight and was starting to feel bloated again & had swelling my feet and ankles. Turns out I have slight hypothyroidism and that was causing the swelling and the inability to lose weight. I was relieved to find out there was an answer for feeling like shit - and thought to myself ‘I’m destined to get every fat disease there is‘. I just had to laugh, I mean really laugh. All of this is out of my control and if I can’t laugh about this, then I might as well lock myself in my room and cry myself to death. And laughing is way better than death by tears.

So my thyroid is under control and I’m on very little steroids, but I still can’t seem to lose any f@#$%ing weigh. I started working out with a personal trainer and after 3 weeks of getting my butt kicked, I managed to loose a measly 3 lbs. Ok, now I’m starting to get pissed. I’m on less than 5 mg of prednisone, eating well, working out 3-4 days a week - WHY CAN’T I LOOSE WEIGHT?

A couple of weeks after I was diagnosed with hypothyroidism, I went back to my endo for results of my blood work (I have blood drawn so often that now I have a favorite arm). I told her I was feeling better - had more energy, the aches & pains have to started to lessen and my muscles are finally starting to get stronger - and asked her WHY CAN’T I LOOSE WEIGHT? Apparently, due to how sick I was prior to getting diagnosed, my body was refusing to let go of the fat suit until I’m completely off steroids. Since my body was getting stronger & I was having more energy, we devised a plan for me to ween myself off the prednisone. I had been waiting to hear this for months - I felt like I had just won the lottery - ‘Congratulations - Kristin Wall, you have just won $1 million dollars!‘

The weening would take 3 weeks. The first two went by with no real issues - slight aches, but nothing unmanageable. Then week 3 came - I stopped the predinisone. I think I told just about everyone I know. The first day went pretty Ok. Then day 2 came. Holy S@#$ - it felt like I was back in the beginning of my recovery. Horrible aches & pains, bones popping, no energy…The worst part was having absolutely NO appetite. I wasn’t nauseous, it was more like my stomach was in knots. I had anticipated feeling like this, so i just bared with it, knowing the end was near.

Two days later I woke up with a cracked rib - on the 4th of July no less. I wasn’t sure it was cracked, so I waited a couple of days before seeing a doctor. Unfortunately, there’s not much a doctor can do except prescribe something to help manage the pain (hey, Vacodin isn’t so bad).

The following week I had another appointment to see my endo to get the results of my blood work. I had a feeling they weren’t going to be good. I was feeling like hell and my feet were swollen to the point of looking like bricks rather than feet (during the peak of my feet swelling, I had to attend a wedding in Grass Valley - 105 degrees in heels - after the ceremony I ditched the heels and threw back a couple of cosmos to help ease the pain).

It was bad news, just as I thought. My cortisol levels were undetectable and I needed to got back on prednisone immediately. I wanted to cry. I wanted to have a full blown temper tantrum (and in my mind, I did - just for a few seconds).

So I’m back to 5 mg of predisone. I know that may not seem like a lot, but my body is ultra sensitive to the slightest change. And I do feel better - no more aches & pains and I can eat again. But I still had terrible swelling in my left foot (I nicknamed it the brick foot). My foot had been swollen for more than I week and I was starting to get nervous, plus I couldn’t wear anything but flip flops. I called my endo and she advised me to see a doctor immediately. Ugggg. I moved to Seattle about a month ago and hadn’t set up my primary doctor yet since I was still seeing my endo in Portland (it’s only a 2 1/2 - 3 hour drive). So I had no choice but to go the ER. Four hours later (6 x-rays & 4 viles of blood), everything came back normal - in fact I was perfectly healthy. Of course they couldn’t find anything wrong, I’ve come to accept that my health is an anomaly. So I’ve been ordered to keep my feet elevated for the next three days (good excuse to telecommute).

The swelling has gone down considerably and I hope to wear something other than flip flops to work next week.

No word on when I’ll start tapering back on the prednisone again. I feel like I’m a recovering alcoholic, living my life by the Serenity Prayer Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to the know the difference.

And to be quite honest, the more I accept the things I can’t change, I learn to live for now - not yesterday, not tomorrow - just today.

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It’s been three months since I had surgery to rid my body of Cushing’s syndrome. A lot has changed since my last post about my recovery progress. My body is slowly starting to gain muscle strength and my energy levels are about 75%. I started teaching my cycle class again about 5 weeks ago - that was a scary accomplishment. I try to work out 3-4 times a week - I look at it as physical therapy. I so badly want to go to the gym 5 or 6 days a week and hit the weights hard, but I have to remind myself that I have to take things slowly. This isn’t something I can just power thru because my body can’t rebound like it used too.

The biggest changes I’ve seen so far have been the weight loss in my face. Big difference - lost the jowels & no more red checks.

with Cushing's syndrome

without Cushings syndrome

The rest of my body is slow to shed the weight. I’m still on steroids (a small dose) and my body is having trouble finding balance. Speaking of steroids… After surgery I decided a change was in order - I cut my hair super short & went platinum blonde. Apparently bleach & steroids don’t mix very well because a couple of days after I become a blondie, my hair started coming out by the handful. My hair was breaking off about 1 inch from root, mostly in the back. @#$!!!! I had two choices. I could crawl in a hole & cry until my hair grew back or I could go with the flow…I still had hair on top, right? Screw it, I want a mohawk! And you know, I actually really like it. Now many women can say they’ve sported a mohawk

The muscle & joint aches are getting better - slowly. The move I move, the better I feel. I look forward to the day I can get out of bed without hearing pop crack pop crack and feeling like I’m about 90 years old. Patience is a virtue, right?

The part I’m enjoying the most is the ability to sit still & relax and for the first time in more than 4 years I can sleep. Before surgery, my body felt like it was constantly zinging - you could almost see the electricity. Now I can sit comfortably & watch a movie from start to finish. And sleep - ah sleep! No more waking up at 2am and getting 3 or4 hours of sleep every night. Now I can sleep thru the night…just like a baby.

I’m still struggling with how to move forward and put all of this in perspective. For now, it’s just one day at a time and the journey continues.

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Life after Cushing’s syndrome…It’s been 5 weeks since I had my right adrenal gland removed laprascopically. Recovery has been rough, more difficult than having Cushing’s. I knew it wouldn’t be easy, but I had no idea I would be in for this. Honestly, I don’t think there’s anything to prepare you for this type of experience. You just have to experience it first hand and take it one day, one hour and one minute at a time.

I have experienced some really positive results due to surgery: blood pressure is normal (no more blood pressure medication!), severe bruising has dramatically reduced, the red checks are nearly gone, lost my jowels (haha:>), no more hot sweats & no more “zinging” (…because I had an insane amount of cortisol pumping thru me).

My other adrenal gland is taking awhile to “wake up” & isn’t producing enough hormones to sustain my body. Until that happens, I have to supplement with steroids.

For years, my muscles, joints & bones have been swimming in cortisol (normal levels are 6 to 23 micrograms per deciliter - mine were over 200). I had a constant roller coaster of energy bursts and my body paid a high price. Now that I’m experiencing normal levels of cortisol, I can feel the damage. Arthritic aches throughout my entire body, low energy & muscles that have no strength (did I mention that I’m a fitness instructor???) to name a few.

As I approached my first week into recovery, my body started to freak out. I thought I was losing my mind - literally. I spent days in bed, barely able to walk from my bed to the bathroom (it’s 10 steps - I counted) because I could feel my bones grinding. I became an emotional train wreck. I’ve never been much of a crier, but now everything was setting me off. I started having serious lapses in my memory & would forget words mid-sentence. At this point I was asking myself why I ever had this surgery - I have never felt such pain in my life. On top of that, I wasn’t losing weight.

The first 3 weeks of recovery took me to some dark places, places no one should ever go. With each passing day, things have got a little easier & I’ve started to see some of my old self. The memory lapses have improved dramatically & the cry fests are gone (although I find I’m a bit more sensitive now?). The aching has lessened, but is still very much there.

I went to the gym yesterday - for the first time since the beginning of Dec. It felt good to move, to feel my muscles working. It was biter sweet. I nearly started crying as I walked down the stairs at the gym. My legs almost gave out on me because of weak muscles & shooting pain in my knees. I kept thinking to myself…I will not take the f*&%ing elevator. I would rather go tumbling down the stairs. I refuse to be physically crippled by this disease damn it! At that moment, something clicked, I knew I finally found my old self: fierce, unrelenting & determined - obstacles are just goals.

Patience is a virtue…oh my :>

I won’t see any weight loss until my steroids are significantly reduced. Each week, with new test results, I am hopeful. Baby steps, right?

This morning I received a comment from a woman who has experienced many of the Cushing’s symptoms. My heart went out to her. I so badly wanted to reply, but she didn’t leave an email. My goal in sharing this journey publicly is to give others an insight to this horrible, horrible disease. There’s little awareness about Cushing’s & is often mis-diagnosed or not diagnosed at all.

I was lucky to have a doctor who understood the symptoms & took the appropriate steps to get a formal diagnosis. But in the end, you have to be your own patient advocate. I hope others find the information I sourced to be of value & help them in their journey.

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This is me early on, before I developed Cushing’s syndrome. I was about 25 years old.

Before Cushing's syndrome

With Cushing's syndrome

During my research of Cushing’s syndrome, I found a helpful Cushing’s resource that explain the symptoms, diagnosis & treatment options for both Cushing’s syndrome & Cushing’s disease. I hope this information is helpful to others who are stricken with this debilitating disease & you can find your way to living a normal life again. You can view more pictures of me with Cushing’s in a later post Recovery Update: Month 11.

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After nearly a month of tests & waiting, I received a formal diagnosis from my doctor on Friday - I have ACTH Independent Cushing’s Syndrome. Ok…so what does this mean?

We have two adrenal glands, located in the abdominal cavity. One gland produces adrenaline & the other gland produces serveral different hormones such as cortisol and aldosterone. Simply stated, it’s an overproduction of cortisol in the body. Cortisol helps to maintain blood pressure and cardiovascular function, reduces the immune system’s inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats.

A tumor developed on one of my adrenal glands, causing it to produce too much cortisol and caused the other gland to stop producing all together. Good news is that it can be treated by the removal of the over active gland. I’ll have to be on hormone replacement therapy until the other gland can function normally on it own (long-term, short-term? don’t know yet).

Apart of me wanted to scream with joy, “Yes, I finally have an answer to this hell!” Now I know what’s wrong (and it’s not all in my head). This has to be the best Christmas present EVER - I get my body back.

Another part said, “Damn, more than 4 years of feeling like I’ve been trapped in someone else’s body.”

More than 4 years of killing myself in the gym with no results, 4 years of watching my once youthful, fit body become one that looked abused by overeating & lack of exercise, reluctantly buying the next size up in clothing (making sure to cut the tags out so I wouldn’t be reminded of the “new” size I’d become), 4 years of trying “alternative” eating regimens (only to become more obsessed with what I ate or didn’t eat).

This last year or so has been particularly difficult. I had begun to accept the fact that this is the way my body is going to look. Fine, I can deal with that. What I feel most saddened by is the decrease & down right lack of energy I’ve had. Plus, my body just f*&^ing hurt (joints, back, racing heart, hot sweats, swelling & bloating ALL the time). The list goes on & on…

Based on what my doctor has said & the information I’ve read so far, it appears that the surgery has a high success rate and my body should return to “normal” once the tumor is removed. If everything goes according to plan, the surgery will take place by the end of January. Looks like 2008 is going to be a big year indeed.

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Pregnancy can do strange things to a woman’s body. I had my son more than 4 years ago & my body has yet to return to normal…

When my son was about one, I gave up on losing the 40+ lbs of pregnancy weight. I’m a fitness instructor & know how to eat right & lose weight, but nothing I did seemed to have an affect.

Over the next 3 years, I started experiencing symptoms related to Cushing’s syndrome. Individually, these symptoms don’t appear to be all that alarming, but collectively they can become life threatening.

All this time, I thought the symptoms I was experiencing were over exaggerated figments of my imagination…The inability to lose weight & continually gaining weight, bloating & water retention, puffiness in the face, insomnia, hot sweats, bruising, extreme fatigue and my favorite - a buffalo hump (my husband pointed this out to me about 6-8 months ago, concerned that I had poor posture spending so much time on the computer).

About 3 months ago, I decided to try to reclaim my body again and started working with a personal trainer. Two & half months passed with NO change. WFT?! I was at the end of my rope & came to the conclusion that something has to be wrong with my body. I was weight training for 40 min. 3x/wk and doing cardio 45 min 3 or 4x/wk. I had even resorted to eliminating carbs from my diet. Basically starving myself.

I went to my doctor to get a full check up. She took my blood pressure & it read 180/92! I was a stroke victim waiting to happen. I explained my exercise routine & my inability to lose weight. What’s wrong with me???

My blood work came back abnormal…Based on the initial results, she suspected it might be Cushing’s disease. She requested that I undergo more testing. Apparently Cushing’s disease is rare, affecting less than 200,000 people in the US population and is often times misdiagnosed.

After nearly a month of testing (blood work, urine collection and a MRI), it’s been officially confirmed that I have Cushing’s syndrome.

I’m bitterly conflicted. Apart of me feels relieved to have an answer as to why my body is the way it is. It validates all of the symptoms I tried so hard to brush off. For the same reasons, I’m frustrated that I lost more than 4 years with my body (Prior to getting pregnant, I was in the best shape of my life & loved to be active. I had completed my first Olympic distance triathlon in 3 hrs & 33 min and was training to climb Mt. Rainier).

There are two types of Cushing’s: Cushing’s disease which causes pituitary tumors and Cushing’s syndrome which causes adrenal tumors. Preliminary MRI results show that I have a 3 cm benign adrenal tumor.

I still have a long road ahead, with more testing, additional doctor evaluations and eventually surgery. My doctor has informed me that once the tumor is removed, my body should return to normal, what ever that means…

My greatest hope is that my body will feel good on the inside AND outside. I’m ready to conquer my next triathlon…

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