September 1, 2015

30 Things About My Invisible Illness You May Not Know

Invisible illness week is this month (September 28th - October 4th)  I have so much I would like to share about my illnesses but have somehow gotten away from that.  So Im kicking off the month with this fun meme I found over at Invisible Illness Week.

1. The illness I live with is: Budd Chiari Syndrome/ Prothrombin G20210A
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: All the way back to highschool.
4. The biggest adjustment I’ve had to make is: Not being well enough to be the mother and wife that I want to be.
5. Most people assume:  That I feel ok because I smile and push on.
6. The hardest part about mornings are:  Trying to wake up after just a few hours of sleep.
7. My favorite medical TV show is:  Hmmm Does NBS's Night Shift count?  I miss Rescue 911!
8. A gadget I couldn’t live without is: My phone.  
9. The hardest part about nights are:  Not being able to sleep or get comfortable.  Its hard for a belly sleeper to sleep well with a liver that is doubled in size.
10. Each day I take __ pills & vitamins. (No comments, please) Right now I only take 2 meds in the morning and 4 at night.  
11. Regarding alternative treatments I:  will entertain anything but I have faith in my doctors.
12. If I had to choose between an invisible illness or visible I would choose: Visible. Its easier to explain things others can see.   
13. Regarding working and career:  I would love to go back to work after my transplant, but what or where, I have no idea.
14. People would be surprised to know: I was told my best option was to terminate the pregnancy that alerted me to my illness. 
15. The hardest thing to accept about my new reality has been: My health is only going to get worse before it gets better.
16. Something I never thought I could do with my illness that I did was: Have a baby. I was diagnosed during my pregnancy and in the very back of my heart a voice said it wouldn't work.  It did.  And my little man is amazing!
17. The commercials about my illness: That would be interesting to see.  There are none yet.
18. Something I really miss doing since I was diagnosed is: Having a beer with the hubby.  
19. It was really hard to have to give up: The idea of working to help support our family.
20. A new hobby I have taken up since my diagnosis is: Reading
21. If I could have one day of feeling normal again I would: Spend the day with my family doing something crazy like zip lining and spend the night with the hubby having a few drinks. FYI- my liver disease was not caused by my love of a good drink!
22. My illness has taught me: That I am stronger than I thought I was.  And all the days I thought were so bad, were nothing.
23. Want to know a secret? One thing people say that gets under my skin is:  I wish I could stay at home all day and not have to work.
24. But I love it when people:  That they know I am trying my best.
25. My favorite motto, scripture, quote that gets me through tough times is:  "When the world says "give up."  Hope Whispers "try one more time."  Story of my life!
26. When someone is diagnosed I’d like to tell them:  They are not alone.  
27. Something that has surprised me about living with an illness is:  How many friends will depend on you since you are always there, but not ever ask how you are doing!
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me goodies.  Once when I had zero appetite a friend brought me protein smoothie popcicles.  And just yesterday another brought me lunch since I couldnt make it to the restaurant.
29. I’m involved with Invisible Illness Week because:  It needs to be shared.  No one can see it.  And if we don't talk about it, they never will!
30. The fact that you read this list makes me feel: like I could really make a difference.
Do you or anyone you know live with an invisible illness?  


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