Skip to main content

Waiting

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 diagnosed with most things, but after waiting for 5, 6, 10 years or more to get a diagnosis, it's the light at the end of the tunnel.  You can finally move on.  You don't feel crazy anymore.

Well, I'm back to that same mindset.  I was out of work for the entire month of August, well, except for 1 day.  I couldn't breathe, couldn't sleep, and just felt all around horrible.  I started the absence with a visit to the MGH ER, because I was so short of breath, it had gotten so much worse.  They sent me home, because I didn't have a pulmonary embolism or pneumonia or any of those more dangerous things.  I felt so defeated. After two months waiting for appointments, waiting for test results, waiting for call backs, I am so ready to have an answer, or a direction, that I don't really care what it is.

For now, back to waiting.

Comments

  1. Hello Danielle,

    I wanted to say I've recently read your story about your battles through this chronic illness originally at the behest of a family member. I found your tale to be quite inspiring and you are worthy of congratulations for the adept way you've developed your public platform to raise awareness. I am truly sorry to hear you're going through such a rough patch being forced to wait. I would hope the situation resolves itself soon. Also, as a scholor myself currently at the University of Florida it would remiss of me to not offer kudos for adding Harvard to your list of challenges conquered. Good luck in all your future endeavors.

    ReplyDelete

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…

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…