🦓 Day 2: Cushing’s Awareness Challenge 2019

In Day 12 on April 12, 2017, I wrote about how we got the Cushing’s colors of blue and yellow.  This post is going to be about the first Cushing’s ribbons.

 

I was on vacation in September 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.

The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral.  When we had our “official ribbons” made, we sent several to Janice’s family.

Janice was the first of us to die but there have been more, way too many more, over the years.  I’ll write a bit more about that later.

One thought on “🦓 Day 2: Cushing’s Awareness Challenge 2019

  1. When I accuse my husband of having an affair his denials break me and I have a psychotic episode. My family doctor and husband think I am lazy, fat and crazy when they ship me off to a mental ward. I know I am physically sick but can’t convince the psychiatrist. He writes in his reports that I am a hypochondriac. My controlling, narcissistic husband tries to gaslight me into believing I am mentally ill. After he admits his affair, I leave him and find out I have Cushing’s Disease with a pituitary tumor and uterine cancer. I have sucessfull surgery to remove the tumor and cancer.

    For the last two years, I have had all the symptoms of Cushing’s, but my endo won’t believe me and test me because I haven’t gained any weight and don’t have a moon face. My endo said it has been four years since I had the surgery and I couldn’t possibly remeber how it feels to have Cushing’s. I will never forget how Cushing’s makes me feel and I know it is back again. Will any of you forget how Cushing’s makes you feel? Why won’t doctors listen to us and believe us?? I get my family doctor to do the 24 hour urine and cortisol bloodwork at 8am and 4pm. Both those tests show positive for Cushing’s. I take those results to my endo who does the Dex Suppression test which conforms Cushing’s. He told me it is a Cushing’s recurrence and I will have to have my pituitary and adrenal glands removed. I told him I would not let him do that. My quality of life is much better this time around than the first time I had it. I still have all the symptoms of Cushing’s but in a lesser degree which lets me still function in my daily life. I credit this change to a strict no starch diet which gives me more energy and keeps the weight gain under control.

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