Skip to main content

Doctors That Become Patients Themselves

I recently read a great entry that was written by a medical student, who thought she understood what being ill felt like, until she fell ill herself.  I'm sure most people understand that it sucks to have a cold, but don't realized the debilitating effects it has on someone who is chronically ill.  I do not remember what "well" feels like.  I can't remember the feeling of being able to walk or run up a staircase without holding on for dear life to the railing.  I don't remember being able to relate to normal people who aren't ill.  I wish I could say I remember what being well feels like, and that's what I'm aiming for, but all my mind can grasp is how hard the walk to work from the parking lot is that early in the morning, and how hard it is to shift my weight back to my feet after a long drive, and how exhausted I am at all times, despite sleeping until 3 in the afternoon some days.

This article was very validating to read, as someone who sits in waiting rooms and listens to doctors, many who have not been seriously ill.  I would imagine it is also enlightening for someone that hasn't ever had a serious chronic illness.


It's hard to gasp the experience of being a patient




I'm sorry I haven't posted much lately.  The excitement of a new puppy coming home in a few weeks and the lack of things worth sharing have left me ignoring my blog.  More posts to come soon, including a book review of "How to be a Friend to a Friend Who's Sick".  I would suggest picking it up if you haven't yet, even if you don't know anyone that is sick, it's a great one to have on hand if you ever find yourself in this position.  

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…

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 ha…