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.
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.
Hello Danielle,
ReplyDeleteI 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.