the journey of a Cushing’s survivor

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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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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