Category — Photos of My Journey

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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I’ve been on natural supplements for about 9 weeks now and I can honestly say I feel better than I’ve felt in years. I know that’s a bold statement, but all of you out there who are suffering from or in recovery from Cushing’s know what I’m talking about.

I’ve been taking my daily regimen of prescription medications in conjunction with these supplements, with the goal of finding a healthy balance before I started weening off the prescriptions. Well that day is here! (Note: Please do not start or stop prescribed medications without consulting with your doctor first.) I’ve been on Synthroid to treat hypothyroidism and Prozac to stabilize my moods since 1 month post-surgery from Cushing’s. Two weeks ago I started weening off Synthroid, reducing my dose to every other day for a week. Once that was done, I did the same with Prozac. And you know what? I don’t feel any difference. I guess I can attribute that to one of two things: the natural supplements I’m taking are working their magic, bringing my body back into balance or the prescriptions had lost their effectiveness at this point in my recovery.

Either way - I’m happy to be free of prescriptions. No more calling in refills or multiple trips to the pharmacy every month. Now all I have to do is order my supplements online and with the click of a button, they’ll be in my mailbox within a matter of days.

On a side note, my son Mason celebrated his 6th birthday a couple of days ago on Sept 13th (born on 9/13 and weighed 9lbs 13oz!). It was not only a milestone for him, but for me too!

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Today I’m celebrating my 32nd birthday & going out to dinner with my family and bestest (is that even a word?) friend in the whole world. I think this is going to be a good year…

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Wednesday is my 32nd birthday…oh my. It’s hard to believe that I’ve been on this planet for that long, ’cause I sure don’t feel that old. I think in my heart of hearts, I’ll be perpetually 24.

My parents had a celebratory dinner for me at their house over the weekend - good food, good wine and a super chocolate birthday cake - can a girl ask for any more? We of course had to take some pictures to mark the occasion and even I was shocked to see how different I look.

I can’t tell you how happy it makes me to finally be able to see the physical results of all my hard work over the past 18 months. And the best part is that my outer self is reflective of how I feel on the inside; happy, balanced, relaxed, youthful with (almost) normal energy levels and most of all, hope for the future.

I think I see a triathlon in my future next summer…

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Besides the horrible hot flash I had earlier this week, I’m starting to feel like the old Kristin again. I’ve been reminiscing in the fact that I can now do some of the things I haven’t been able to do in years.

• sleep through the night
• no trips to the bathroom in the middle of the night
• able to work out on a regular basis (3+) times a week
• push myself in my work outs without feeling like crap after wards
• jump rope!

I think the biggest improvement I’ve seen over the past week or so is that I feel happier.  I think part of it is that Cushing’s isn’t on my mind 24/7. For the past year, Cushing’s has defined who I am and consumed my life in every way. And now that I’m not playing the waiting game with my recovery and it’s finally happening, I think I can start to separate myself from Cushing’s.

The things I enjoy most, like mountain biking or playing outside with my son and my new found hobby painting, are slowly becoming apart of my life again. I can’t tell you how good that feels. I’m still young - and I want to feel young, not a 31 year old person living in a 70 year old body.

Even though I’ve made great progress, I’ve had some minor setbacks. Recently I’ve developed a sharp pain in my right leg/hip/butt area. It strikes at random times, so I don’t know what to think of it. So far it hasn’t prevented me from doing anything (except for the occasional mumbling of f@#$ or s@#$ when the pain strikes).

Cushing’s will always be apart of me - the scars are a silent reminder. But I think I’m in a place where it doesn’t have to consume my life.

My new painting!

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On this day last year at this very moment I was preparing myself to go the hospital to have an adrenalectomy to remove my right adrenal glad. I had developed a 3cm benign tumor that turned into Cushing’s syndrome.

I felt like shit - hot sweats, shakes, racing heart, my eyes felt like they were going to pop out of my head, my skin hurt and I had little strength. Most of all, I was scared. Hell, I was going into surgery. I don’t think anyone looks forward to having their body cut open with a scalpel.

When I arrived at the hospital, I was told they had moved up the time of my surgery and had to prep me ASAP. OK, now I was starting to freak out. I hadn’t eaten in more than 12 hours and I felt like I was going to pass out. The last thing I remember was being rolled into a small, sterile surgical room. The room felt unusually cold. All I wanted was a blanket to keep me warm. Now the drugs were starting to take over. Huh, you want me to move my body from this gurney to the one sitting next to me? You’re kidding right? Then I woke up in the recovery room. I was so groggy and wanted to wake up so I could look at the new me. I was cured from Cushing’s syndrome.

The past 12 months have been more difficult than I was prepared for. There were times when recovery was harder than being sick. There were times when I wondered if I would ever recover.

I’m glad those days are long behind me and I’ve reclaimed my body & my life. I think one of the things that made my recovery easier was creating a support network with others who were going through the same thing I was. The friends I’ve made in my recovery have helped to ease the pain and loneliness of the disease. And it’s these people who truly understand the struggles of recovering from Cushing’s.

I can assure those of you in recovery from Cushing’s that it does get better. Each day you make a little progress. Recovery is a marathon, not a sprint.

• No more weight gain, started the process of loosing weight
• started regaining muscle strength, started an exercise program again
• skin is no longer paper thin
• no more bruising
• no more hair in unwanted places
• no more hot sweats
• no more excessive hunger, normal appetite
• normal face, no longer moon shaped and puffy
• normal blood pressure
• normal blood sugar
• normal cholesterol
• very little insomnia
• no more aches and pains in my joints
• no more skin rashes
• stopped developing stretch marks and the stretch marks I do have are starting to fade
• stable moods
• ability to sit and relax without fidgeting

I have a lot to be grateful for and milestones to be proud of. I hope this time next year I’ll be in a place where my body or health isn’t inhibited in any way.

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Well Internet, I’ve done it again. Good-bye blondie, hello foxy brown :> My mantra has always been change is good for the soul. It keeps life interesting. I have a finite amount of time on this Earth, why not have fun with it, right?

This is a picture of my sister and I taken over the Christmas holiday. She’s my only sister, whom I love dearly - and we only get to see each other about twice a year.

I really enjoyed the holidays this year. I was relaxed and able to enjoy the people around me. In fact, I was so relaxed, I had a couple of days when I slept nearly 12 hours. Holy cow! If my husband didn’t wake me up, I could’ve slept all day long…Sometimes, I feel like I’m still trying to play catch up from years of sleep derivation.

The biggest difference I noticed this year over last year is that I feel comfortable in my skin. No, my body hasn’t morphed into it’s pre-Cushing’s state. But I feel like I can really embrace the changes it’s made.

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Holy cow - it’s been 11 months since I started my recovery from Cushing’s syndrome. Lots of ups and downs and inbetweens.

Pictures can sometimes tell a story more accurately than words alone.

Over time, you can see the weight gain - especially in my face. And I also sported the sunburn glow as a result of Cushing’s. All the while, I would hide from mirrors, refusing to accept what was happening to my body. I used to dread the holidays, fearing to see people I hadn’t seen in awhile. In the back of my mind, I’d be thinking ‘please don’t let me get hot sweats at dinner’ or ‘my face feels like it’s on fire and my eyes are about to explode - does anyone else notice this, or is it just me?’ or ‘do I have anything I can wear to cover all the bruises on my arms and legs?’ - the list goes on and on.

A lot has changed since then.

For the first time in 5 years, I’m actually looking forward to the holidays. Now that’s progress.

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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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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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