A New Day, A New Diagnosis

I wrote recently about the crazy weird things that have been happening lately, including jaundice, hemolysis, chest pain, a weird rash that made my eye shut because of the swelling, swollen lymph nodes, and mild leukocytosis. I saw the rheumatologist on Monday, but first saw the resident (or fellow, I'm unsure which she was). She took my entire medical history, which is always difficult to go through, and remember every tiny, and major thing that has happened. When the rheumatologist came in, he was already pretty convinced that I had Lupus. I have a strong family history of Auto-Immune diseases, I have about 8 out of the 11 qualifying symptoms needed to make a diagnosis, and for once, this diagnosis was pretty straight forward.

Unfortunately, because I had to have my adrenal glands removed in order to treat Cushing's Disease, the usual initial treatment of predisone to stop the flare up was not a good treatment for me. Instead, I will take plaquenil, or hydroxycloroquine, which may take up to 3 months to work.

A new diagnosis is always hard to get, even if it means I finally have an answer to all these weird symptoms. It always means more appointments, more medication, and more symptoms, and most of the time, a lower quality of life.

It has been 10 years since I knew I had Cushing's, and about 14 years since I started having symptoms. I don't even remember what it was like to feel well, and maybe this is as good as it gets.

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH. I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital. I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead. I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait. I cried some more (no one should be surprised by this), and finally headed into the prep room. I met with my surgeon one last time, and kissed my parents one last time. As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites. I knew there would be many small incisions, but having the…

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…

Life with Chronic Illness

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