Life with Chronic Illness

I finally, after over a year of talking about it, I FINALLY quit my job. My discrimination complaint is still pending, and could take 18-24 months from the date of my complaint (September 2015) to move to the next step.

I planned and planned to take this step, but just had trouble pulling the trigger.  I was afraid of having no money, afraid to have nothing to do, and afraid to tell people. It's embarrassing to not be able to work.  I know, I have a legitimate reason not to at this very moment, and I'm eventually going to work again. It's a tough call.  But, after talking to my mom, she expressed great concern for my health and wellbeing (what's left, that is), if I kept going with no changes.  She was waiting for me to end up in the hospital again, and afraid that my body physically could not take it anymore. 
So, I quit.  I gave my notice in October, tried to tell some of my coworkers but didn't feel like my leaving was worthy of celebration. It was sad.  Don…

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 diagnose…

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, prescribe…

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 tr…

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 ha…

Great news - I will be going to ENDO 2016 this weekend!  I was unable to go today due to work, but I will be there tomorrow and Saturday at the CSRF booth. Come say hi if you will be there!

Cushing's Support and Research Foundation



I have been a little sick recently with a cold, and today I ended up leaving work in an ambulance yet again.  It was right before my lunch hour, and I started feeling a little dizzy and faint, so I went to an exam room to relax for a few minutes.  I ended up just getting worse, even sweating through my scrub pants, and my face was BRIGHT red.  I was seen quickly in Urgent care, and they thought due to my medical history it was worth it to send me to the ER to have some labs and chest X-rays done.

I think this was all caused by a combination of things.
1. Dehydration
2. Hypoglycemia (I woke up late and rushed to work without eating, or even grabbing breakfast on the way)
3. Cold medicine - you know how some cold medicine (I'm talking about you Sudafe…

Today is Rare Disease Day!  It is recognized internationally, and is becoming more well known in the US.  Having a rare disease is not easy.  For many, it takes way too long to just be diagnosed, then there is the issue of treatment.  I can't even count on my fingers and toes the number of times I've had to explain my rare diseases to a doctor, or a nurse, or even friends and family.  My rare disease is Cushing's Disease.  I may also have carcinoid syndrome, but that is yet to be proven or officially diagnosed.

I have included some links below to a few helpful articles and websites!



16 Reasons You Should Pay Attention to Rare Disease Day

24 Things People with Rare Diseases Wish Others Understood

NORD

I saw a new doctor last week.  He is a neurologist, but only practices part time due to other obligations.  He spent over 3 hours with me going over my medical history from birth to present.  We talked about how long I went before I was diagnosed with Cushing's Disease, but how pathology from my pituitary gland never showed a tumor.  He mentioned carcinoid tumors, and we talked about how many times that has been mentioned, as a possible cause to some of the strange symptoms I've had over the years since my adrenalectomy.

There have been a number of abnormalities on imaging studies in the last 2 years, so we went over each of those.  His hunch is that I do have a carcinoid tumor, and it's probably in/near my residual thymus tissue that recently showed some enlargement.

I am looking forward to working with him over the next few months to try and find a cause for the shortness of breath and fatigue.

I have this struggle, especially at work, with how much to talk about my health issues.  I feel like I want to yell at a coworker when they complain about stomach aches, or headaches, or other minor aches and pains.  I want to say that it's only a fraction of what I deal with every single day.  I want to say I would gladly trade them for a migraine that lasts only 2 days.  I would love to be tired because of a baby up all night instead of sleeping for 10 hours only to wake unrefreshed.

I always struggle with speaking up for myself, or not caring what people think.  I feel like a horrible person for thinking these things when someone complains about normal things that everyone complains about.  I do care, but it's hard to relate.  I wish I could talk openly about how I actually feel today, when someone asks "How are you?".  I know they are expecting "well" or "okay".  One time I would like to say, I'm struggling to get through the day because I…

I have been more exhausted than ever before over the last month.  Nothing new has come up health wise, but the daily tasks are becoming more difficult as time passes.

I have filed a discrimination complaint against my workplace a few months ago, and this week I have the first investigation meeting with the Massachusetts Commission against Discrimination.  I'm not totally sure what to expect out of this meeting, but hopefully, it will make the company I work for more cautious when it comes to employees that are sick or need accommodations, or are hospitalized multiple times a year.

As a result of all the discrimination, I also am leaving my job in the next few months.  I think I will take some time off from work.  It's hard to believe that I am too sick to work, but after this year, and all of the challenges I have had to face, I need some more rest, and I need to focus on staying well, instead of fighting to work.

I'm excited to spend more time with Huck, and to have a …