Kristine,
Sorry that your life just changed so dramatically. Maybe we can help you up the learning curve.
This site has a lot of good info. You may want to study the disease as much as you can. Knowledge is of course a good thing.
This diagnosis carries a huge emotional component as well. Very few people seek counseling. I found meeting with a clinical social worker of great value. My local hospital provides the social worker for no charge – just part of the package.
I wish you well.
Peace
Forums
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Introducing myself - just diagnosed with IgA MGUS
Thank you, Multibilly, Joe, and FoF. I really appreciate getting your feedback.
The most recent blood test was the first in several years that my WBC and RBC have made it into the normal ranges. They usually fall slightly outside of the low end. My primary care physician has repeatedly tried to assure me that the numbers that make up the range for normal are based on a bell curve. He said being slightly outside the range is worth keeping an eye on but I should not worry. I worry anyway. I should probably find out more about immunoparesis, as it seems that I trend toward the low end on both counts. I have my bone marrow biopsy this week (ouch!) and hope that those numbers fall on the low end, too.
I have added hemoglobin, creatinine, and calcium to the list of things to chart over time. In only a few days I feel as if I am actually beginning to understand a bit about all this. (Just a few weeks ago the only light chain I knew anything about is the one on the ceiling fan.)
I may remain in that statistical "1%", or not, the outcome is not my choice. The only thing I can choose is how I respond to having MGUS. So, I've changed what the acronym should represent to me, to something more positive: Mindfulness, Grace, Understanding, and Serenity. That may prove the more challenging to me.
My heart goes out to you, Joe, and those of you who are dealing with active disease. I can imagine that, no matter how informed you are or how prepared you might be, entering into the next stage must still knock the wind out of your sails.
Take good care.
The most recent blood test was the first in several years that my WBC and RBC have made it into the normal ranges. They usually fall slightly outside of the low end. My primary care physician has repeatedly tried to assure me that the numbers that make up the range for normal are based on a bell curve. He said being slightly outside the range is worth keeping an eye on but I should not worry. I worry anyway. I should probably find out more about immunoparesis, as it seems that I trend toward the low end on both counts. I have my bone marrow biopsy this week (ouch!) and hope that those numbers fall on the low end, too.
I have added hemoglobin, creatinine, and calcium to the list of things to chart over time. In only a few days I feel as if I am actually beginning to understand a bit about all this. (Just a few weeks ago the only light chain I knew anything about is the one on the ceiling fan.)
I may remain in that statistical "1%", or not, the outcome is not my choice. The only thing I can choose is how I respond to having MGUS. So, I've changed what the acronym should represent to me, to something more positive: Mindfulness, Grace, Understanding, and Serenity. That may prove the more challenging to me.
My heart goes out to you, Joe, and those of you who are dealing with active disease. I can imagine that, no matter how informed you are or how prepared you might be, entering into the next stage must still knock the wind out of your sails.
Take good care.
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kap12 - Name: Kristine
- Who do you know with myeloma?: Myself (IgA MGUS)
- When were you/they diagnosed?: September 2016
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