the journey of a Cushing’s survivor

I find myself saying that a lot these days. Just when I’m getting to the point in my recovery where I feel good physically, my mind starts going downhill (my memory that is).

I consider myself a rather organized person (my husband likes to call it detail natzi) and I pretty good at multi-tasking (when you’re the mother of a 5 & 1/2 year old who works full-time and also trys to manage running 50%+ of the household, you don’t have much choice other than mastering it).

At work, I’m usually on top of my game. I stay focused, organized and on task. But lately I’ve been a chaotic mess. I feel like I have the attention span of a 5 year old. I’ll forget to do things or forget appointments (yeah, that hasn’t gone over well). If there’s a task I need to get done, I have to write it down the very minute I think about it, otherwise I’ll be racking my brain 5 minutes later trying to remember what it was I was suppost to remember.

My most recent memory lapse (I like to call them brain farts) was just down right frustrating. I made a list of things I needed to get at the grocery store (yes, I actually wrote them down!) and as I get into my car, i tell myself that I need to remember to grab the cloth totes inside my trunk and bring them with me inside the grocery store. And what did I do? Forget to bring the cloth totes with me inside the grocery store.

Now take this scenario and apply it to all aspects of my life, all day, every day. Woah! Who stole my memroy and when can I get it back? I thought this was all suppost to be behind me by now? I wonder what other little surprises I might have waiting for me in the near future…

If you enjoyed this post, make sure you subscribe to my RSS feed!

The Swedish Medical Center, located in Seattle Washington on Cherry Hill, is hosting a Pituitary Patient Symposium on Cushing’s Syndrome on Sat. May 9th from 8:30-4:40pm. Hear from nationally-recognized experts about the diagnosis and treatment of Cushing’s Syndrome. There will also be opportunities for you to share your thoughts and experiences with other patients. Breakfast, lunch and snacks provided.

Fee: $50 per person (limited number of scholarships available call (206)386-2502 for scholarship information). To register for the symposium, please visit the health classes section located on the Swedish Medical Center website.

I encourage all of you who are located in the Seattle are to join me at this conference. It’ll be a great way to get up to date information on the latest treatments for Cushing’s and you’ll have an opportunity to meet other Cushing’s patients & survivors. If you plan to attend, please leave a comment or send me a message with your contact information so we can meet up.

I look froward to seeing you there!

If you enjoyed this post, make sure you subscribe to my RSS feed!

Two to three weeks after I had surgery, I started experiencing serious bouts of depression. It was equally physical as it was mental & emotional. It hit me like a ton of bricks and left me feeling totally incapacitated. I would cry uncontrollably for no reason and I had deep, mournful thoughts about the state of my life. I literally thought I was going crazy. Shit, I could’ve been the face for the Cymbalta TV ads.

I’d never experienced depression like this before. My doctor had warned me that I might experience depression after surgery, but she didn’t warn me that I was probably going to be swallowed up by a black hole. I was in a scary place and didn’t know if I was going to make it out.

It felt like I was having an out of body experience during those first few weeks of recovery. I felt so alone, even though I had family and friends who were at my side. Depression is a difficult thing to explain. You can’t make it fit into a pretty little box or expect that three sentences can fully explain the madness that’s going on in your head.

And as if dealing with the chaos in my wasn’t enough, I had to contend with the outside world, who’s views on depression are often skewed and discriminating. Like with so many metal illnesses, society is quick to overlook the serious impact it has on people’s lives and dismiss treatment all together because it’s not thought of as a real illness.

My depression was brought on by chemical imbalances in my body after I had surgery. No matter how much I tried to fight it, it was a reality that I couldn’t hide from. About two weeks post-surgery, I talked to my doctor about the depression I was experiencing and she started me on Prozac.

Within days, my entire outlook changed. The dark, gray cloud that had been looming over me was starting to disappear. The constant crying slowly stopped and the big, black hole became smaller and smaller. I started to feel like me again. I was in the early stages of my recovery and had a long way to go, but now I had my old self back and could fight the fight. So yes, I think I can say that Prozac saved my life (or at least my mind).

It’s fourteen months later and I’m still taking Prozac. My body still isn’t 100% back to normal, but one day soon it will be and that’ll be the day I can say good-bye to the Prozac and close that chapter in my life.

If you enjoyed this post, make sure you subscribe to my RSS feed!

I’m happy to announce that the Cushing’s Partner Program is up and running on Meetup.com.

This group is for patients and survivors of Cushing’s syndrome and Cushing’s disease and is a place where patients can partner up with survivors of Cushing’s to gain an inside perspective on the recovery journey from Cushing’s. Patients who are in the early stages of diagnosis and recovery have the opportunity to partner with survivors who can share their personal insights about their recovery journey.

This group is completely virtual so people from all over the world can join without geographical restrictions. There are no physical meet ups or meetings. We meet and communicate through email and by phone.

Most importantly, we are here to support each other in a positive way and to share our personal experiences so that it may benefit others in their recovery journey.

Cushing’s is a debilitating and lonely disease. But you are not alone. There are others, just like you who are going through the same thing. Whether you’re current reader of this website or you’re new, I encourage you to please join this group by clicking on the Meetup badge located on the right side.

If you enjoyed this post, make sure you subscribe to my RSS feed!

The driving force behind my blog from day one has been to share my story in hopes that it might help others in their own journey of diagnosis and recovery from Cushing’s. When I was diagnosed with Cushing’s syndrome in Nov. 2007, I struggled to find information from the patient’s point of view. My doctor couldn’t tell me how I would feel after surgery, aside from what she learned from her previous patients. I wanted a first hand experience from someone who’d been through the same thing I was going through.

I did find some online resources where Cushing’s patients shared their stories and struggles with one another. But I found the environment to be more negative than positive. I was looking for support, not company for my misery. I wanted to talk to someone who was further along in their recovery and could tell me how long it took them before they could walk down stairs pain free. Someone to support me through my journey.

In A.A. recovering alcoholics work with a sponsor to help them on their journey to recovery. The sponsor is usually someone who has been in the program for awhile and has a better understanding of how to work the program to achieve sobriety. More important, a sponsor is one of the few people who truly understand what it’s like to be an alcoholic and how to begin the process of recovery.

I think this methodology could be applied to the journey of illness, like Cushing’s. What if there was a resource that could match you up with someone who has survived Cushing’s? Or who at least started the process of recovery? This person could offer you mental and spiritual support in your journey. You would be able to learn first hand from someone else’s experience. Distance wouldn’t matter because you could trade emails or phone calls.

Anyone have thoughts on this? Would you be interested in having a sponsor or sponsoring someone dealing with Cushing’s?

If you enjoyed this post, make sure you subscribe to my RSS feed!

I really, really dread having a cortisol stimulation test. I know this test is the only way to see how well my body is recovering and if my adrenal gland is starting to produce at a normal level. The clinic where I have the test done also serves patients who are receiving chemotherapy and other various treatments. It’s so drepressing. When you walk in, you can feel the gloom. I know that’s horrible to say. These people are there getting treatment to save their life. But these people are really sick (the place kind of smells like death) and it freaks me out to think I was once just as sick.

More than anything I look forward to getting the test results back. I’m feeling better than I’ve felt in years and I hope it’s reflected in my results. When I see my endocrinologist, I can finally say I feel good, really good. I do feel like the worst is behind me and everyday my body gets a little stronger.

Now if I could only do something about these damns stretch marks…

If you enjoyed this post, make sure you subscribe to my RSS feed!

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.

If you enjoyed this post, make sure you subscribe to my RSS feed!

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.

If you enjoyed this post, make sure you subscribe to my RSS feed!

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.

If you enjoyed this post, make sure you subscribe to my RSS feed!

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.

If you enjoyed this post, make sure you subscribe to my RSS feed!