Tuesday, September 20, 2016


Sometimes it feels like I spend my whole life waiting.  Waiting for the next appointment, waiting for test results, waiting for the next time I have enough energy to see friends. I feel like I'm waiting for my "real" life to start.  A "normal" life.  One without illness.  One without hardship.  One it seems like everyone but me has.

I think this is one of those totally weird things that most, if not all people who have had Cushing's can relate to.  I remember saying this so much before I was diagnosed, I would be so thrilled to be diagnosed with ANYTHING, no matter how horrible, just to finally have an answer, for the wait to be over. I used to joke about how relieved I would be if someone found a tumor.  I actually WAS relieved when a tumor was found.  I called everyone I knew to celebrate.  It's so morbid, but it is an emotion so widely understood in the Cushing's community, at least to my knowledge.  You don't celebrate when you are diagnosed with most things, but after waiting for 5, 6, 10 years or more to get a diagnosis, it's the light at the end of the tunnel.  You can finally move on.  You don't feel crazy anymore.

Well, I'm back to that same mindset.  I was out of work for the entire month of August, well, except for 1 day.  I couldn't breathe, couldn't sleep, and just felt all around horrible.  I started the absence with a visit to the MGH ER, because I was so short of breath, it had gotten so much worse.  They sent me home, because I didn't have a pulmonary embolism or pneumonia or any of those more dangerous things.  I felt so defeated. After two months waiting for appointments, waiting for test results, waiting for call backs, I am so ready to have an answer, or a direction, that I don't really care what it is.

For now, back to waiting.

Wednesday, August 24, 2016

My Skincare Routine with Cushing's

I had pretty bad skin when I was first diagnosed with Cushing's.  My skin was pretty uneven, and I always had one major pimple that I would pick at and it would never heal.  Now, my skin is the opposite.  I never breakout, and don't have to cover up or treat anything, other than some moles and redness. I almost never wear foundation or concealer, when I do wear makeup it's usually mascara and lip balm.  So, for comparison, I will go through my morning and night skincare routines while I had Cushing's, and what I do now.

When I showered in the morning, I washed my face with Philosophy's Purity Made Simple face wash. This stuff is so gentle, you can rub it into your eyes and it doesn't sting at all!  Next, I applied Aveeno Ultracalming Moisturizer SPF 15. This didn't really help with my redness, but is definitely made for sensitive skin.  The SPF is also a necessity year round!

If that pimple on my chin was acting up, I would apply Epiduo, prescribed by my dermatologist.  It has benzoyl peroxide which helps make the spot clear faster. 

That's pretty much it!  Now, I use so many products, but my skin is very dry, and Iam much more concerned about sun exposure than I was when I was younger. 

I use either First Aid Beauty Ultra Repair Wash or Philosophy's Purity Made Simple when I shower at night.  A few times a week, I also use Dermalogica Daily Microfoliant, which is a physical and enzyme exfoliator, which helps my skin feel smooth.  When I get out of the shower, I usually apply Take a Deep Breath Oil-Free Oxygenating Gel Cream in the summer, or in the winter, I use Idealia Life Serum by Vichy, which makes your skin glow.  I also use Supergoop! Anti-Aging City Sunscreen Serum SPF 30 in the morning before going anywhere, to protect my skin from the sun. 

I've learned that over washing your face leads to more breakouts, so if you're going to wash your face, wash it at night so you don't have to wash again in the morning.  Usually you just need to rinse your face in the morning.  

Hopefully this was helpful, let me know if you have any questions! 

Wednesday, August 10, 2016


I spent a few days on Martha's Vineyard with friends, as I have pretty much every summer since we were in High School and college. I wasn't feeling my best, but didn't want to slow anyone down, so I think I pushed myself a little bit too hard.  I had a wonderful time, but when it was time to go back to work last Wednesday, I was feeling awful.

It seemed as if the same shortness of breath and high heart rate that happened in January 2015 was happening again.  Just to clarify, there is a "daily" level of shortness of breath that I've sort of gotten used to, and then there's the shortness of breath that happens occasionally that prevents me from even standing for more than a few seconds.  This time, it was the second.

I decided to try to go to work as usual, because maybe it would get better as the day went on.  Instead, I ended up leaving work at 11:30 to drive myself to MGH.  I spent most of the day in the ER, but they didn't figure anything out or treat me.  So here I am, a week later, still living from the couch, waiting for pulmonary appointments and call backs from all of my doctors.

Once again, I feel like medicine has failed me.  I am searching for answers myself, I combed through every single lab result, image report, and more to see if maybe I missed something.  This shouldn't fall on my shoulders, someone from my medical team needs to be fighting this with me.  It just doesn't feel like I have that at the moment.  We tried talking to patient advocacy and all that did was cause these doctors to focus on covering their butts instead of focusing on the actual problem.

So, until we get some answers or this just magically gets better, I'll be here, probably watching the olympics all week. If you have any ideas, please leave them in the comments.  Thanks for "listening".