Sunday, February 1, 2015

Carcinoid Syndrome Flushing


Flushing 
Not very pretty: melted mascara; mangled brows; sour-puss expression; no foundation, cover-up, or blush of any kind. But carcinoid syndrome ain't pretty. This is tell-tale flushing (which happened while relaxing on the couch - no rhyme or reason to it). My other symptoms are on high alert too. No one likes an ugly picture of them blasted on social media, but I made a commitment to be honest about my journey.
Carcinoid Syndrome Symptoms
Flushing feels hot and uncomfortable - like an internal, tingly sunburn. It starts on my cheeks by the bridge of my nose and spreads across my face and chest in a matter of minutes. For me, it usually happens in times of stress or when eating too much sugar. Lately, however, it happens for no reason at all. (I don't drink alcohol, but many have a reaction to that as well.) It is not menopause - got tested for that. Nor is it Lupus, got tested for that too. So it's not rocket science to put carcinoid cancer and carcinoid flushing together.

In the past, doctors have remarked how "good" I look... maybe now, with photographic evidence of clear flushing - everyone can get on the same page medically. Advice for zebras: gather as much evidence of fleeting symptoms as possible - you may just look too fabulous for doctors to consider you ill!

Admittedly,other than regular Sloan Kettering appointments, I've avoided my recent follow up visits with specialists. I feel a bit guilty about it, but sometimes you feel even more sick staring at yet another set of plastic chairs and fanned magazines on a faded coffee table, waiting to be called - only for the doctor to shrug and order more needles, more tests. But now it's time to get back on track and get my symptoms under control again

2 comments:

  1. Greetings,
    My name is Dr. Dana Hansen, Assistant Professor of Nursing at Kent State University. You can learn more about me by visiting my faculty web page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/
    We are contacting you because you are listed as the contact person of the blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
    I was inspired to conduct this research during my sister-in-law’s journey through breast cancer. After interacting on her blog, I began to wonder what it was like for her husband (family caregiver) to read her blog. The family caregiver of the person who is writing the illness blog can find out more about our study by going to our study website: https://nursing.kent.edu/caretaker. There is a screen for you to share your contact information if you are interested in participating. You can also email us at caregiver@kent.edu

    After we receive your information, we will contact you to discuss the study further and establish a time to conduct a 1 hour phone or Skype (your choice) interview. During the interview, we will ask questions about your experience as a caregiver interacting with your loved one on an illness blog. A nominal onetime payment of $50.00 will be mailed to you once the interview is complete.
    Participation is voluntary. Refusal to take part in the study involves no penalty or loss of benefits to which participants are otherwise entitled. Participants may withdraw from or stop the study at any time without penalty or loss of benefits to which they are otherwise entitled.
    If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
    Thank you for your time and consideration,
    Dr. Dana Hansen
    Dana Hansen RN, PhD
    Assistant Professor
    Kent State University, College of Nursing
    113 Henderson Hall, P. O. Box 5190, Kent, OH 44242

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