the journey of a Cushing’s survivor

In Part 1 of How to become your own patient advocate I talked about 3 different ways you can take control of your visit with your doctor. In this post I’m going to explore how find a doctor that best meets your needs. Most of us go to the list of doctors that are within our insurance network and randomly chose a doctor that sounds good. We make the appointment, show up and the deal is sealed. From this point forward, most of us will feel assured that this new doctor is all-knowing and will be able to fix any health problem for me.

Woah, woah - backup! I think it’s a common mistake that patients willingly put their health care in the hands of total strangers. Would you leave your child with someone you’ve just met? Or would you take some time to meet them first, get a little information on their background before trusting them to care for your child? I think most of us would (I hope).

We should think about our health care provider the same way. Just because he/she has an M.D doesn’t mean they know everything there is to know about medicine. I think it’s important to note that “studies of autopsies have shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time.” I understand that doctors are human and make mistakes and it’s for this reason patients should not rely solely on the word of their health care provider if they feel their health concerns are not being addressed.

Most of us like to think our health care provider has our best interest at heart, but that isn’t always the case. “Under the current medical system, doctors, nurses, lab technicians and hospital executives are not actually paid to come up with the right diagnosis. They are paid to perform tests and to do surgery and to dispense drugs.” I know this sounds awfully pessimistic but I think it’s something we should all consider.

I think one of the ways we can prevent our health care from getting lost in the system is have an informational interview with every new health care provider.

• What’s their background? Are you seeing this doctor for a particular specialty?
• What is their health care philosophy? Is it something you feel comfortable with?
• Do they listen to your concerns regarding your health?
• Do they listen to your questions and answer them to the best of their ability or put you in touch with a resource that can?
• Do they minimize your concerns or questions?
• Do they allow enough time in your appointment to discuss all of your questions & concerns?

I believe a doctor that will take the time to answers questions and address concerns will also take care of his or her patients for the long-term. No one knows your body better than you do. For example, if you bring up concerns about symptoms you’re having and you know that your body just doesn’t feel right, a doctor that has already demonstrated that he/she will take the time to address your concerns will mostly likely do what they can to find an answer for you.

But if this isn’t the case and your doctor brushes off your concerns, then it’s time to find yourself a new doctor. Don’t be afraid to seek out another doctor. Remember this is your health and you shouldn’t trust it to just anyone.

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This past weekend I drove down to Portland to visit one of my most favorite people in the world. She and I met nearly five years ago back in art school and we’ve been great friends ever since. She & I love the outdoors - especially mountain biking. More importantly, she’s been my rock through some tough times in my life, including my battle with Cushing’s syndrome. Her attitude and never ending energy are infectious.

I drove down Friday afternoon and from the moment I arrived, we were on the go. Our plan for Saturday was to spend the day at a spa steaming ourselves and getting a massage. I finally met some of G’s long-time work friends and we had a blast. We finished off the rest of our day with sushi and live music at one of the local hangouts. Makes me sorta wish I still lived in Portland…(but we won’t go there).

I haven’t had this much fun in ages. The best part was I could actually keep up and didn’t feel inhibited by Cushing’s. What a milestone!

I did feel a twinge of envy at the spa though. The other girls were in their bikinis, proudly showing off their bodies while I was wrapped in a towel fearful to let anyone see me naked. I know I’ll never have the body I used to, but I want to be in a place where I feel comfortable letting it all hang out (so to speak). And I’m just not in that place yet.

This past weekend gave me a new sense of passion for the things I love to do and that I need to start living more instead of just being stuck. To stop focusing on the things I can’t do, but on the things I can do.

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When faced with a debilitating illness and symptoms a doctor can’t diagnose, you’re often left at a dead end road with no answers. But with so many resources available to us these days, the quest for answers doesn’t have to stop when a doctor says ‘you’re fine, there’s nothing wrong with you.’

How many of you comparison shop when you’re going to buy a big ticket item, like a new TV? This is usually an expensive purchase and you want to get the most for your money. Would you buy the first TV you saw? Or would you shop around, comparing prices and specs at various stores? I know I would. And that’s the mind set needed for getting the best health care possible. If you’re having symptoms that your doctor won’t address or says the test results show nothing is wrong, then shop around and get another opinion. No one doctor has all the answers.

This is when you make the conscious decision to change from passive patient to an active advocate for your own health care. And that’s OK. Don’t feel like you’re going to offend your doctor. Your health needs to be the number priority.

Prepare yourself and take control over your visits with your health care provider. You can do this in 3 ways.

1. Ask questions. If your doctor talks to you using medical jargon, tell them you don’t understand. Don’t nod your head in silence.

2. Be prepared. Come to your appointment with questions in mind or write them down. Try to stay focused on the bigger issues you’re experiencing. You have a limited amount of time during your appointment to discuss your symptoms or concerns and you don’t want to leave wishing you’d asked this question or that question.

3. Communicate your concerns or fears to your doctor. Their job is to help you achive a healthy well-being. And if they can’t do it themselves, then they should be able to refer you to someone who can. If your concerns revolve around insurance or inability to pay for your medical needs, don’t be afraid to bring it up with your doctor. They can often times refer you outside sources that can offer assistance.

In How to become your own patient advocate: Part II I’ll explore the different ways in which you can select a health provider that will meet your needs - so please stay tuned.

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It feels great to be on the other side of my recovery from Cushing’s syndrome. I think I can safely say the worst is behind me (I say that with two fingers crossed behind my back). I’m not completely out of the woods just yet and I’m sure there’ll be more ups and downs in the coming months. Now that I can see the light at the end of my tunnel, I’ve been thinking about how I will continue to share my story in a more meaningful way.

This got me thinking back to the reason why I started this blog - I wanted to share my story, my journey with Cushing’s publicly so that others may find comfort in knowing they’re not alone. When I was first diagnosed with Cushing’s syndrome, I had a hard time, really hard time finding information from the patients perspective. I found article after article filled medical jargon that I couldn’t begin to understand. Most of all, I wanted to know what to expect in my recovery. My doctor didn’t give me much insight to what my life was going to be like after surgery. In fact, I thought I’d be able to return to work 2 weeks from the date of my surgery. Boy was I wrong - it took me 10 weeks. And when I did return, I worked from home part-time for the first couple of weeks. The list goes on and on about what I wasn’t prepared for in recovery.

I’ve been sharing my story on this blog for over a year now and I can’t begin to tell you how much it’s helped me get through my darkest moments. It’s been therapeutic to share my experiences with others who understand what I’m going through.

What has been most surprising and rewarding is the number of friends I’ve made because we’ve shared a unique experience that few understand. And it’s these connections that give me strength to continue day after day in my recovery.

I’ve received numerous messages from women who feel alone, who are struggling to figure out what’s wrong with their body, who deserve to have a doctor who listens and will order the right tests. Their messages are so personal and our stories are much the same. Because they found my blog, along with other Cushie blogs, they don’t feel alone anymore. They look at the pictures I’ve shared of myself and say, that looks like me, I have those symptoms too! And they take that information and bring it to their doctor. I can’t tell you how good that feels to know that sharing my story may have helped someone in their own struggle.

Looking forward, I want to take what I’ve learned in my experience with Cushing’s and use it to help others. The biggest problem I had was not having the information I needed from the beginning. I didn’t have the resources or support network. Most of all, I didn’t know how to be my own health advocate. I know it sounds like a cliche, but it’s true, knowledge is power.

In the coming months, I’m going to explore, research and show others how to become your own health advocate and learn how to take charge of your health care.

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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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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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