the journey of a Cushing’s survivor

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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I know that I’m not alone in my struggles to find clothes that fit well and don’t look like maternity clothes. Cushing’s does strange things to a person’s body - big on top (well actually big in the middle), skinny legs and arms. So it makes it next to impossible to find clothes that are roomy enough through the chest and stomach without looking like you’re about 6 months pregnant.

Pants are a total nightmare. If you can find a pair that fit in the waist, the legs and butt are about 3 or 4 sizes too baggy. And because the pants are so baggy, they make you look even heavier than you really are. It’s really a no win situation.

For the longest time, I resorted to lounge clothing that consisted of velor sweat suits in a couple of different colors and athletic clothing with nothing but elastic. As my body has started to reshape itself, I have grown to hate those velor sweat suits and elastic waist pants. So I decided to give shopping for real clothes another try.

I tried a variety of stores, trying to keep an open mind. I knew there had to be something out there that would flatter my body that didn’t have to have an elastic waist.

I found it. I found an entire store full of clothing that fit me from head to bottom! I could look stylish - even trendy - and I could finally say goodbye to velor sweat suits forever.

Ladies, I have found Dress Barn. Fun clothing - ranging from casual to professional to dressy. It all fits! In fact, since June of this year, I have been slowly replacing my entire wardrobe with new clothing that actually fits my body.

I have only one gripe. I really really don’t like the name Dress Barn. It makes me feel like I’m shopping at a store for barn animals. There have been many times that I’d walk by their store and think ‘Dress Barn - yuck - I don’t want to shop for clothes at a barn‘. So Dress Barn, if you happen to read this, may I suggest that you change your name to something that celebrates the fuller figured woman - instead of making her feel like a barn animal.

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When I started my journey with Cushing’s syndrome last November, I felt scared, isolated and alone - and most of all defeated. I had always been a fighter, had faced obstacles head-on, didn’t let things get me down. No matter what the problem, there was always a solution.

The one thing I thought I had control over - my own body - turned out to be one thing I had absolutely no control over. When I was diagnosed, I kept asking myself WHY? What did I do wrong? Why is this happening to me? Will I ever be in control of my body again? Will I ever feel like me again?

I found little to no information as to what it was really like after surgery. I wanted to know how I was going to feel, what to expect. In many ways, I felt blind-sided with the effects of my recovery. It was more difficult than I could have ever imagined. I would try to explain what I was going through to my family and close friends, but it was difficult for them to understand. I don’t think anyone could really understand unless they’d gone through it too.

In my darkest moments shortly after I had surgery, I decided to start this blog to share my personal journey with Cushing’s syndrome as a way to ease my pain. But I also wanted to let others know what recovery is like, from a personal perspective. So that maybe someone else will find comfort in knowing what lies ahead. Over time, it has developed into a wonderful outlet - I guess you could call it therapy.

More importantly, I have been blessed with the responses I’ve received from others suffering from Cushing’s. And I want to thank all of you who have so willingly shared your story with me. Hearing from others has helped me in my own recovery. I know that I’m not alone in my struggles. And for that, I thank you.

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Most of the time I’m positive about my recovery from Cushing’s syndrome. But today is not one of those days. I have yet to experience a significant weight loss. It’s been 8 months and 16 days since I had surgery - and I’ve only lost 8 lbs. WHY?

I’m still on cortisol replacement therapy - 2 mg of prednisone a day. I know, I know that’s not enough steroids to prevent me from losing weight. My endo seems to think it is. Her theory is that for whatever reason, my body just won’t let go of the weight until I’m TOTALLY and COMPLETELY off steroids.

And if that weren’t enough, I developed hypothyroidism sometime after I had surgery. I’ve been on thyroid medication for the past 4+ months and my TSH levels are OK.

Like I mentioned in my previous post Recovery Update, I have seen and felt changes in my body. But I still have a bloated-looking stomach. I just can’t shed the weight.

How long do I have to wait for this to end? I thought for sure I would’ve had more weight loss by now. Maybe some of you would be willing to share your weight loss success - or if you haven’t been able to loose weight. I think hearing other’s stories & struggles would help with mine.

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It’s been nearly nine months since I had surgery to rid my body of a tumor that was destroying my life. To be exact, it was a 3cm benign tumor on my right adrenal gland. How could something so small make me so sick? I would later come to learn that Cushing’s syndrome was to blame.

Over the years, I developed a number of strange symptoms - most of which I thought were just in my head. When I was at my sickest, I knew my symptoms were no longer in my head. They were more real than they had ever been. I looked sick and I felt sick.

I remember those difficult times and use them as a benchmark for my recovery progress. I’d like to share the progress I’ve made so far.

Each day, recovery gets a little easier and I can see the results of hard work. More than anything, I feel good knowing that my body is healthy on the inside, because without that, I have nothing. The outer part of me will catch up in its own time. And you know what, I’m OK with that.

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I’ve been trading emails with another survivor of Cushing’s syndrome. She’s been a great comfort and sounding board - just to know that there’s someone out there who’s going through the same things I am. I’m a bit farther along in my recovery than she is and she recently asked me how long does it take until the aches and pains start to go away. Ummm?

That’s a tough question. Cushing’s is a rare and complicated disease and recovery is different for everyone. She’s been in recovery for about 3 or 4 months now and is still experiencing a lot of aches and pains in her joints. On the other side, she’s lost a significant amount of weight and the hump on the back of her neck has decreased too. That’s wonderful progress - considering it usually takes a full year before the body completely recovers.

I on the other hand have not had such success with my weight loss. The weight has been painfully slow to come off. I’ve lost 8 lbs to date. But my body has taken on a new shape, so it actually looks like I’ve lost more weight that I actually have (I know, stay away from the damn scale). My face has lost a lot of the fullness, the hump on the back of my neck is starting to disappear and most of all - my stomach is loosing the bloated, pregnant look.

The real progress in my recovery has been the fact that I no longer have aches and pains in my joints on a daily basis. Sure, I have times when my physical ability is limited, but over all, I feel pretty good. Now I need to work on getting my stamina and muscle strength back. I get winded walking up 3 flights of stairs.

Recovery is a slow process. Progress happens over time - most of which we aren’t aware of. Just before my surgery, I was unable to bend over to tie my shoes while sitting down. My stomach was too bloated and it hurt all over. For that matter, I wasn’t able to bend down at all. Now, more than 8 months later, I’m able to bend over to tie my shoes without a second thought.

I like to think of these milestones as baby steps. They’re small victories that only you know about. And it’s what keeps me motivated to stay positive - because the grass is greener on the other side.

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I was at the peak of my memory loss shorty after I had surgery. It felt like I was experiencing Alzheimer’s. I would forget words, stop mid-sentence because I forgot what I was saying, wouldn’t be able to remember events that had already taken place - the list goes on.

As my recovery has progressed, my memory has improved. The dense fog has cleared and my daily activities are no longer severely interrupted by my mind going blank. But I’m left with huge gaps. Have any of you experienced this?

Both my son and husband can remember past events so clearly - why can’t I remember? It’s like the memory has been permanently erased from my mind.

This past weekend, my husband and I spent the weekend in downtown Seattle - just the two of us. Before moving to Seattle three months ago, we had visited Seattle for the weekend a couple of years ago. And my husband was recalling the restaurant where we had eaten and the hotel we stayed in. He said ‘Don’t you remember eating at that restaurant, the one over there‘ (and pointed to the restaurant across the street). I couldn’t remember a damn thing. This is just one of many instances of a time I can’t remember.

I know that excess amounts of cortisol has adverse effects on a person’s memory - mostly short term. But does it erase blocks of memories all together? Or will it get better as recovery continues?

Thoughts anyone?

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