Skip to main content

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".

Comments

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…