the journey of a Cushing’s survivor

I thought I’d share some pictures I took this morning to show the progress of my recovery.

The first photo is a close up of my face. I’ve lost the full & red cheeks. In some pictures though, it still looks like I have a double chin. What can I do - one thing at a time, right?

This next photo is a profile of my neck - you can see I still have a slight hump on the back of my neck. It’s improved a lot since surgery. I guess these things take awhile.

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No matter how much my body shifts or changes, I will always have battle scars to remind me of the disease that took over my body without asking me first. No amount of exercise, creams, lotions or oils will diminish the wreckage of stretch marks I have accumulated over the years due to what plagued my body.

In the beginning, I used to loath those awful red lines that took away my youth and forever labeled me as one of those fat girls. But those red lines went much deeper and not only seared my skin, but seared my soul.

At the peak of my illness, my stretch marks burned like fire on my skin. I no longer had the freedom to wear what I wanted. My clothing was dictated by these lines that were taking over my body. Bathing suits quickly became a thing of the past, shorts were no longer on option - as were most dresses. The clothing that made me feel feminine now made me feel like I was a prisoner in my own skin.

I didn’t want to face the realities of what my body was becoming. I couldn’t figure out what was happening to me - to my body - why, I just wanted to know WHY.

It’s been almost one year since I loathed the scars left by stretch marks. I think I’ve finally laid that war to rest. These red lines are no longer red - they’ve begun to fade to a soft pink. Maybe the color will fade completely, I don’t know?

These lines that cover my body no longer control me. I can look in the mirror and like what I see. These scars are a reminder on the challenges I’ve overcome - that we as Cushing’s survivors have overcome.

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I won’t lie, it’s damn hard to live with Cushing’s - before and after surgery. I don’t think a person afflicted with Cushing’s can ever fully rid themselves of it. Some part of it will always be there, whether it’s the scars left by stretch marks or the mental & emotional effect it had on your self image or the occasional & sometimes frequent battle with aches & pains. It will always be there.

For those of us who are survivors of Cushing’s, we’ve had to learn how to keep living in spite of our illness. We’re not just simply Cushing’s survivors - we’re mothers, wives, sisters - we work outside of the home to support ourselves & our families. Other people count on us.

Many of us are lucky to have a supportive family, spouse and friends that will help us when times are rough. But they can’t do it for us. Only we can do that. Each one of us musters the strength each morning to do the things we need to do to keep moving forward - even though our body may refuse to cooperate.

You know what keeps me going? Remembering those days when I’m pain free, when my body will let me do what I want, when I look in the mirror & I like what I see - when I don’t let Cushing’s consume my mind, even if it’s only for a couple of minutes.

As I was driving to work this morning, a song came on the radio that really hit home - Superwoman by Alicia Keys.

It’s a reminder that we are survivors, be strong and be proud. Today IS a good day.

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Ok, so I recently moved up to Seattle from Portland. Well, more like three months ago. All the while, keeping the same endocrinologist I’ve been working with since I was diagnosed with Cushing’s syndrome. I’m still on steroids and I’m not sure when my recovery will be complete.

The thing is, I’m fearful of switching to a doctor in Seattle. I’ve read some many recoveries go a rye because the new doctor didn’t like the method of treatment of the previous doctor or the new doctor isn’t as knowledgeable. I trust my current endo - heart & soul. I feel like I’m at the mercy of anyone new. Am I just overreacting? Probably. But it’s my recovery, my health damn it!

The drive from Seattle to Portland is roughly 2 1/2 - 3 hours (if the traffic isn’t horrendous). So a round trip to see my doctor would take pretty much a full day. I keep asking myself, how much do I value trust or how much am I willing to pay for it?

What would you do? Should I just bite the bullet & work with a new doctor in my area?

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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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