loss of taste
October 27, 2009 3:10pm
Well, now I have a NEW symptom to add to my already never ending symptoms. Food doesn't taste like it use to. I made lasagna and it …
Progress
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Zebransa
5:14pm, January 2, 2009
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About Me
Zebransa
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About Me
I was diagnosed with Carcinoid in 2006 but diagnosed myself in 2002 (I had the flushing whenever I ate but Doctors didn't believe me). Had an operation to debulk in 2006 and have not been able to go back to work ever since. I am a Hospice RN and really miss my job. I am on disability and do not want aggressive treatment....only symptom management. (Quality of life versus Quantity of life) My children are very supportive and understand my "wants" with this disease. My 11 year old step son has Asperger's and we think he is also bi-polar. He has been in and out of "psych wards" (placed by the schools) and has shown no improvement with meds changing. He has now been "kicked out" of the last school and is home. They send a teacher a couple of times a week for an hour. This is his education?? So SAD!
I was diagnosed with Carcinoid in 2006 but diagnosed myself in 2002 (I had the flushing whenever I ate but Doctors didn't believe me). Had an operation to debulk in 2006 and have not been able to go back to work ever since. I am a Hospice RN and really miss my job. I am on disability and do not want aggressive treatment....only symptom management. (Quality of life versus Quantity of life) My children are very supportive and understand my "wants" with this disease. My 11 year old step son has Asperger's
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Interests
My hobbies include cooking, gardening and swimming. I also love to watch my new grandbaby and love having all of my children come over.
My hobbies include cooking, gardening and swimming. I also love to watch my new grandbaby and love having
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Journal
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Pain
October 12, 2009 1:42pm
Some days are just worse than others. I have been having so much pain for the past month. I just wonder if I am getting more tumors, …
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This entry is private
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update
August 17, 2009 2:12pm
I wish this sweating would go away. Of course it is summer so it's kind of normal to be sweating now but it makes my hair stink....soaking …
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Hugbook
Thumbs Up
Thanks! I needed to hear that. Sometimes you need to be reminded of what's important. All too often I got caught up in what NEEDS to get done, and it leaves very little time to "enjoy the moments". I think that's what I get sick of the most. I love my boys sooo much! I appreciate the hug ;)
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Hug
Been meaning to write...think of you often...have prayed for you and hoped that things have improved!
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Prayer
I know what you have to handle...stay close to your Divine Power...mine I Jesus Christ...He is the only reason I have not killed myself...Take Care.
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I’m With You
I'll be thinking of you and keeping you in my prayers....big hug!
Hug
thanks for the hug
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Photos
Zebransa hasn’t uploaded any photos yet
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Goals
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Support Groups
Close Carcinoid Syndrome
Treatments
- Octreotide Working / Worked
- Taking 30LAR Sandostatin every 2 weeks. I have it delivered to my home and one of my children gives it to me.
- Surgery Working / Worked
- Had surgery to debulk numerous gi tumors in June 2006.
Close Asperger Syndrome
step son has Aspergers. He's 11 years old and has attended numerous schools (they "kick him out"). Poor guy is so emotional....knows he isn't "normal". It is just so sad; my heart breaks for him. He can be so sweet but within a second change.
Treatments
