Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You? | myMPNteam

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Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You?
A myMPNteam Member asked a question 💭
posted July 8, 2022
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A myMPNteam Member

Most people in my life have no idea. They say, "You look fine". I do have an awesome husband that takes up the slack on the house work, allows me to take a nap when I need to, and makes sure to drive me to the clinic whenever I need him to. I am also blessed with a group of ladies that I teach at Bible Study. Every single day at least one or two of them text to see if I need anything, or just to ask how I am feeling. They offer to run errands for me, help me at home, fill in for me teachling Sunday school or Bible Study. God placed them in my life at just the right time!
As far as Doctors, my local Oncology clinic is only concerned with keeping my red count where it should be. They are not interested in anything but the Hemoglobin and Hematocrit. I do, however, have an awesome group in San Antonio that I visit by televisit. They are very interested in my total well feeling and quality of life.

I am a very blessed girl, and I hope you find the same!

posted July 10, 2022
A myMPNteam Member

This is the safest place I have to complain or vent. I hope the same for you. Others, not here, ask how I’m doing, but if I start telling them, they quickly lose interest. They really don’t understand what is wrong with me and quickly tell me how good I look. The interest they may have had quickly evaporates, and it shows by their non-verbal communication. I have learned to answer the “How are you doing?” question with a simple answer. I say,
“Fair. I choose to live day by day.” Then I smile. I don’t want to waste my precious energy by anything negative. I have my husband, daughter, and siblings who will listen to me for a little while and then give me positive encouragement. When I really feel the need to talk about the bad days I know y’all will listen with interest and caring. You will show true interest and give genuine hugs. And you will join me in celebrating any success I have in dealing with this awful illness. Thank you.

posted July 10, 2022
A myMPNteam Member

I don't think you are complaining I have the same problem and because people don't see any physical health problem they all think we are ok

posted July 9, 2022
A myMPNteam Member

Hey, actually no one really; my husband sees the outward effects. No one but other MPN afflicted, though, can actually understand.

posted July 9, 2022
A myMPNteam Member

I am not sure even my doctors realize how I am affected by my mpn. Everything is just lumped together as I have a number of physical problems. As I get older it seems as though the concern and support from even family members just goes away. That sounds as though I am feeling sorry for myself. Maybe I am, my pain management doctor is changing medications on me and am having a really rough day. Things will be better tomorrow. Sorry for sounding like I am complaining.

posted July 8, 2022

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