the journey of a Cushing’s survivor

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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Ladies, you know what I’m talking about. That warm feeling that starts in your gut and works it’s way to the top of your head. You know when you blush or get embarrassed and your body responds by getting hot - really hot? That’s the feeling I’m talking about, but lasts much longer (like 15 minutes longer).

I haven’t had a hot flash since before the Christmas holidays. It’s always a shock to my body when it happens. Today I was running errands on my lunch hour and I could feel it coming on, like a train wreck waiting to happen.

At first I thought it was low blood sugar and just needed to eat something. I was getting a little shaky and felt dizzy. Then that overwhelming feeling of burning up on the inside started in the pit of my stomach - I knew there was no going back. So I made a mad dash to the closest restaurant to order take out. As I was waiting in line, I could feel sweat rolling down my back and chest. I was wearing a wool coat, which didn’t help matters. Even if I stripped naked right there on the spot, it wouldn’t have helped.

About 5 minutes later (which felt like an eternity) my food arrived and I sat down to eat. I took off my coat and the lining was damp. F@#$ I thought these days were behind me! So I ate my lunch, hoping and praying that my body would cool down. Drips of sweat were rolling down the side of my face. I was glad that I’d found a table in the back corner of the restaurant so I could suffer alone. By the time I finished, I drank 3 large glasses of water.

It took nearly 30 minutes for my body to return to normal - and another hour for it to recover.

I have low cortisol levels, so I don’t understand why this is still happening? Anyone else still having hot flashes after Cushing’s surgery?

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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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I’ve been at my new job for just over 6 months and I just found out our building has a public gym with a locker room and showers ( I think it’s a well-kept secret) - it’s rather small, but has everything you need for a lunch time workout. I’ve been itching to get back to the gym and this seems to be the perfect solution.

I haven’t worked out (in a gym) for about 6 or 7 months and I was nervous today, not knowing what my body would be capable of. All throughout my years of being sick with Cushing’s, I was a dedicated gym rat. In fact our entire family spent quiet a bit of time at the gym. Our gym had a special kid’s club, so it made it easy for us to drop off our son so we could work out. Since moving to a new city and starting a new job, those visits to the gym became farther and few between. Mostly because I just wasn’t up to it after a long day at work.

I’m approaching one year in recovery (Jan 29th) and I’m finally starting to feel better - my energy and stamina are improving leaps and bounds. The aches and pains have for the most part disappeared.

So I brought my workout clothes to work and committed myself to the elliptical machine for 35min and treated myself to about 15min of stretching afterwards - it felt GREAT. All afternoon I’ve had the post-workout afterglow. No aches, no stiffness, no pain ANYWHERE. Is this really my body? It’s hard to believe that I’ve reached this point in my recovery. I’ve had my first taste of what it’s like to feel like a normal person.

There was a time not long ago that I envied the woman around me in the locker room at my gym, getting dressed in their jeans. At the time, all I could wear were stretchy knit pants (I think I owned 3 or 4 pairs of the SAME black stretchy knit pants). I longed to be able to wear jeans.

Today was a milestone. I no longer own ANY stretchy knit pants (I threw them out over the summer). And guess what I wore after leaving the gym - JEANS

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Over the past couple of weeks I’ve received a number of messages from readers who have doctors that just won’t listen to their symptoms - and if they do listen, they don’t take their symptoms seriously enough to oder tests to get to the root of the problem. This has to stop.

There’s no question that our health care system is over-burdened and underpaid and as a result, patient care has gone down the tubes. I know, depressing - especially when you’re relying on these people to figure out what’s wrong with your body. But with that said, I can say there are some wonderful doctors out there who do go the extra mile for their patients. If you’re struggling to find a doctor that has experience with Cushing’s, the Cushing’s-Help website has a section dedicated to doctors with their contact information. You can search for doctors by specialty and by geographic location.

So what do you do when you’re health is going downhill and your doctor brushes it off, saying you ‘need to eat better and exercise more‘. A couple of things should happen.

• From that moment forward, become your own health advocate. Use the Internet to research the symptoms you’re having. Start a journal and list the symptoms you’re having, when they started and how frequently you have them.

• If you find information on the Internet that supports the symptoms you’re having, print it out and show it to your doctor.

• Find a new doctor! I know many of us are restricted by our health plans that dictate which doctor we can see - but I assure you, there will be at least one that will listen to your symptoms and take action. It’s your right to get the health care that you feel you need.

• If you can, try to find a family member or friend who can help support your efforts in getting the heath care you need. Perhaps they can help you research the symptoms you’re having, help you track down a doctor or simply go with you to your doctor’s appointment to support you.

Symptoms of Cushing’s are often times mistaken for more common problems, such as poor eating habits and lack of exercise. And yes, when you look at the symptoms of Cushing’s individually, it doesn’t look like much. But when you look at them collectively, it’s cause for concern and deserves further investigation.

Don’t let a doctor brush off your symptoms - be persistent.

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I recently received an email from a young woman who is struggling to get tests to determine if she has Cushing’s, but her symptoms point to cyclical Cushing’s. Her story of being bounced from doctor to doctor is all too familiar. In her case, like many others, these doctors won’t commit to additional testing to get to the root of her problems - they attribute her inability to lose weight to poor diet and lack of exercise. Looking at it from the surface, I think just about anyone could give that advice. What’s really frustrating is the fact that these doctors are ignoring the long list of symptoms she’s experiencing. In my opinion it’s a doctor’s responsibility to follow through with their patient’s health care. And if a patient complains of abnormal symptoms, then it’s the doctor’s responsibility to do what’s medically necessary to get to the root of the problem.

Unfortunately we don’t live in a society where our medical professionals can be trusted to be our health advocates. How many doctors did you see before one of them would take the time to listen to your symptoms to understand there was a real problem with your health? How many doctors did you see before you received a diagnosis of Cushing’s? It took me 4 1/2 years and 4 doctors before I was diagnosed with Cushing’s. Although I had finally gotten a diagnosis, the doctor who diagnosed me did know all that much about Cushing’s. In fact, she had only seen one other Cushing’s patient in her entire medical career. And I didn’t know if I had Cushing’s syndrome or Cushing’s disease, I would need to get further testing to determine which one I had. It was then that I realized that I’d have to become my own health advocate. I was scared, faced with a disease that I knew nothing about and had to figure out a way to get myself the best possible care.

For those of you out there who think may be suffering from Cushing’s, I’d like to share some of the information I’ve gathered in my research to overcome this disease. I’m only going to touch on the types of Cushing’s, the symptoms associated with Cushing’s and the various tests you should request from your doctor if you think you might have Cushing’s. What causes Cushing’s will be in a future post.

There are a couple of different types of Cushing’s.

- Cushing’s disease: there is a tumor on the pituitary gland caused by the adrenal gland producing excess amounts of cortisol, which leads to excess amounts of ACTH released from the pituitary gland.

- Cushing’s syndrome: there is a tumor on one (or both) adrenal glands which causes the adrenal glands to produce access amounts of cortisol.

- cyclical Cushing’s syndrome: there a periods of excess production of cortisol followed by normal production of cortisol. Typically there are three peaks of excess followed by two troughs (low peaks).

- Cushing’s disease with a cancerous pituitary tumor: a cancerous tumor develops on the outside of the pituitary gland, which causes excess amounts of ACTH to be produced. This is considered a rare form of Cushing’s.

Here’s a list of typical symptoms of Cushing’s. Some people experience all symptoms associated with Cushing’s, while others experience only a handful.

• severe fatigue
• weak muscles
• dark red, purplish stretch marks
• think skin
• bruise easily
• frequent skin rashes, skin problems
• insomnia
• hair loss / thinning hair
• round face ‘moon’ face
• red cheeks
• high blood pressure
• high blood glucose
• increased thirst and urination
• irritability, anxiety, or depression
• a fatty hump on the back of the neck
• excess disproportionate weight gain / heavy chest and torso, thin arms and legs

If you suffer from any combination of these symptoms, I urge you to talk to your doctor. Particularly if you’ve experienced a sudden, unexplained weight gain. Most doctors initial response will be to eat better and exercise more. Again, if you have any of these symptoms, don’t let them brush it off. This is where you have to be your own health advocate. You have to live in your body day in and day out, every day - they don’t.

‘No single lab test is perfect and usually several are needed. The three most common tests used to diagnose Cushing’s syndrome are:

- 24-hour urinary free cortisol test

- measurement of midnight plasma cortisol or late-night salivary cortisol

- low-dose dexamethasone suppression test

Another test, the dexamethasone-corticotropin-releasing hormone test, may be needed to distinguish Cushing’s syndrome from other causes of excess cortisol.’

I am in no way a medical professional and urge you to talk to your doctor about any symptoms you may be having. My goal is to share the experiences I’ve had in my journey with Cushing’s syndrome and to encourage others to become their own health advocate.

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I find myself saying that to my significant other more than I thought I would at this point in my recovery. Internet, I know this is a sensitive subject so please bear with me OK?

It wasn’t until I was diagnosed with Cushing’s did I finally have an answer as to why I wasn’t in the mood to have sex E-V-E-R. I attributed it to being busy, being tired, being a full-time student, being a mom, being everything. I thought it was just me. But when I learned that having a low libido is a side effect from Cushing’s, I thought maybe it’s not me after all? All this time I felt like Austin Powers who lost her mo-jo.

I’ve made progress in some areas and my libido has picked up from time to time. Thing is, I’m still not feeling like my old self and it’s been nearly a year since I’ve had surgery.

I’d like to ask all of you out there, do you still suffer from low libido now that you’re in recovery from Cushing’s?

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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 know that sounds harsh, but damn it, that’s how I feel.

I won’t lie, this past weekend was rough. I felt like I was back in my early recovery days, where it was hard just to get out of bed in the morning and all I wanted to do was sleep. Saturday morning I managed to drag myself out of bed at 10:30am (and I probably could’ve slept for another 2 or 3 hours).

All day long, I felt out of sorts and didn’t know quite what to do with myself. I started a half dozen projects that I didn’t finish, then got frustrated because I didn’t finish them - but I couldn’t finish them because I was too damn tired. Maybe my ADD was getting the better of me (seriously, I do have ADD - I was diagnosed with it when I was 14 and have been treating it with medication ever since).

Saturday night my husband and I went over to a friend’s house for a holiday gathering. It’s been ages since we’ve been out A-L-O-N-E (Mom’s & Dad’s out there, you know what I’m taking about). I had forgotten about being dog tired and was excited to spend time with my friends. That didn’t last long. A couple of glasses of wine later, I was ready to curl up on the couch with a blanket. Who cares that there’s blaring music and a room full of people

We ended up cutting our fun short and made it home before the strike of…11pm. Uuggg I feel old - and I’m only 31 years old. I have a new wish this year. Santa, can you make me feel like I’m 20 again?

Sunday was a little more productive. I managed to finish one of the projects I had started the day before. By 3 o’clock, I was ready to call it a day. I was so tired that I could feel it in my bones. Plus, I had a little nausea on the side. That’s always fun. My endo warned me that I may feel nauseous or light headed from time to time as my body adjusts to being off prednisone.

Cortisol, prednisone, hydrocortisone - they’re all a necessary evil that I’d rather not have to deal with. But we don’t get to pick and choose these things, do we?

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