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.

Cushings:
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. 

Now: 
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

Again?

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".

Wednesday, April 20, 2016

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland.

I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's hard to think that a diagnosis even a year earlier could have changed the outcome so drastically.  Or, maybe it wouldn't have.

I gained a lot of weight between the middle of my senior year of high school and the start of college.  Maybe 50 lbs.  I knew I was gaining weight, but hadn't changed my activity level or eating habits (which were both not so great).  I got a horrible case of pneumonia after 2 weeks at school, I had to be taken out of my dorm by ambulance.  I gained even more weight before coming home for Christmas.  I don't think it registered yet that this was not anything I was doing.

My sophomore year, after moving into my sorority, I had my first kidney stone.  A few girls sat with me as I called the health center, then drove me to the ER.  I remember the wheels turning as the ER doctors asked if I had any family history of kidney stones, and when I got home, I started researching.  After a few hours, I stumbled upon Cushing's Help.  I read the list of symptoms and cried, this is what I had, I was so sure.  I told everyone, my friends at school, family, friends at home, and went to my PCP for testing.  I think I was still seeing a pediatrician, so they sent me to family medicine, who referred me to an endocrinologist.  I saw her once, and she called to say that all the tests she had run were normal, which was "so wonderful!".  Another few months had passed, and then I got shingles.  Again, not normal for a "healthy" 20 year old.  I was also in a stressful living situation, so I thought that might have contributed.

I was probably around 200 lbs by now, up from my high school 150.  I felt huge, but started going to the gym with a friend.  I would sweat through everything daily, so wore big sweatshirts to cover the fat, and the sweat.  I saw another endocrinologist, this time at Brigham and Women's, who ordered 24hr urine cortisol tests, which I knew were the best test.  After a few visits, she found nothing wrong and prescribed me a weight loss drug, which I never filled.

I think I had a breakdown at this point.  I felt so abnormal compared to my healthy, fit, and thin peers.    Even girls that ate the same things as I did weren't as big as me.  I started to drive to class instead of walk, risking tickets because my legs were so weak.

I saw a friend's father, who was an endocrinologist, who saw me as a favor, since I was at a dead end at this point.  This didn't turn into anything.

I had been on birth control pills forever at this point, I started them at 13 years old, because of heavy, painful periods.  My periods were lighter, and more regular on OCPs.  At one point, I had been bleeding for 2 weeks, and decided to go to the women's center.  They ran a battery of tests and asked that I use the upcoming spring break to see my gynecologist at home.  By the time I saw her, I had been bleeding for almost a month.  She sat down, and it was clear she had spent a lot of time reviewing my record.  She thought it was most likely due to a problem with my pituitary gland, as my hormone levels were all near 0.  She scheduled an urgent brain MRI for the next day, and agreed to call me as soon as she knew the results.

At this point, I can't even tell you how many times I had asked for a brain MRI, from my PCP, endocrinologists, everyone.

I got a call on Monday morning at 830am, while I was babysitting, saying I did, indeed have a micro adenoma on my pituitary gland.  My mom immediately starting calling for a referral to Mass General's neuroendocrine center.

I cried so much after that call.  The mom of the kids I was watching came home and didn't know what was going on. She was well aware of my health problems, and I think was just as overjoyed as I was at the news.  I told everyone, finally believing I would be Cushing's free in a matter of weeks, maybe I could have brain surgery over the summer so I would be ready to work in the fall, maybe I could live at home for a year to get back on my feet, maybe all of this will be over.

Unfortunately, my journey to get a diagnosis did not end here.  I spent 18 months going to appointments at MGH and seeing a fellow (who sucked, by the way).  I was again, at a breaking point when I saw my current endocrinologist for the first time.  I had a diagnosis in two weeks, and had a scheduled surgery a few weeks after that. You know the rest.

This diagnosis was missed so many times.  I will link a post down below that might help explain the chaos of searching for a diagnosis.  I always thought, if I had leukemia or breast cancer, I would never end up at the 7th doctor looking for a diagnosis.  I probably wouldn't see more than 1.  I think Cushing's, and some other rare diseases are unique in this way, that patients will find the diagnosis years before physicians do.  I think with Cushing's a lot of that has to do with how the patients look.  Obese, depressed, sick men and women (mostly women) get just a glance before the judgment begins.