Skip to main content

Cushing's Awareness Challenge - Day 25 - Life Isn't Fair




(For some reason, this photo has been REALLY popular with the Cushing's group...I bet you can guess why based on the plethora of blog posts about how much Cushing's sucks!)

Everyone has heard that life isn't fair.  I seem to get this lesson over and over and over again in my life. From being 285 pounds and the sickest I hope to ever be, to unsuccessful surgeries and getting into school and not being about to go, and of course being a medical mystery for the last few months.  I didn't ask for any of those things yet they were all put in my way for me to deal with them.  Yes, it has made me a stronger person.  Yes, maybe things happen for a reason.  That doesn't mean I smile through it every day.  

One of the other things that hit me like a ton of bricks was that I will never get to be a "normal" 26 year old.  I don't even know what normal is but I would guess it involves things like living somewhere that's not your mom's house, and having a job where you make enough money to pay bills and maybe have a little left over, and not taking and carrying around syringes and medications everywhere you go.  (True story - I cried a few weeks after my adrenalectomy when I realized I will always have to carry a bag with me because of medications.  We were apple picking and I couldn't deal.) That's not fair, but that's my life and I have gotten used to it since then.

Yes, I cry a lot and have very hard days but I think I have to give myself (and all the other Cushies out there) a little credit because we are STRONG.  I have had many days where I just want to sleep and never wake up to deal with another hard or disappointing thing, but I haven't given up yet.

















Comments

Post a Comment

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…
1 comment
Read more

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…
Post a Comment
Read more

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…
5 comments
Read more