Invisible Illness Week starts on September 9th and here is a wonderful meme that they are having participants do. Here are my answers:
- The illness I live with is: GPA (Wegener’s), and RA and auto-immune.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: since 2008
4. The biggest adjustment I’ve had to make is: I have had to make several adjustments to my life; one was taking more time for me and not over doing things. That has been the hardest thing for me to do. And accepting the help of my caregiver and those who offer their assistance.
5. Most people assume: that I am just being lazy
6. The hardest part about mornings are: waking still tired, but having to get things done anyway.
7. My favorite medical TV show is: I don’t have one
8. A gadget I couldn’t live without is: my lap top
9. The hardest part about nights are: Just recently it is the leg pains and foots pain I have.
10. Each day I take __ pills & vitamins. (No comments, please) I take about 12 pills every day
11. Regarding alternative treatments I: I am open to them. I am slowly taking baby steps in using food as medicine. I use basil oil and peppermint oil to help with inflammation. They work for me.
12. If I had to choose between an invisible illness or visible I would choose: Neither, but since I have to choose I would choose an invisible one even with the rude comments.
13. Regarding working and career: I currently don’t work, my trach and breathing makes this so. I do volunteer work because I am allowed to do it at my own pace and that is what I need.
14. People would be surprised to know: That I am generally calm, but I have my break down moments. And when I have to do things to save my life like pulling my t-tube out or my trach it does bother me I just choose to stay calm so that it doesn’t get any worse.
15. The hardest thing to accept about my new reality has been: not being able to walk very far at a time and exploring the world like I have always wanted to.
16. Something I never thought I could do with my illness that I did was: I have met some amazing people and they have become friends. I even step outside of my apartment into the social media room and meet up with my neighbors. It is good for my soul
17. The commercials about my illness: I have not seen any
18. Something I really miss doing since I was diagnosed is: I miss going on adventures to the National Rain forest or other great hikes in my area.
19. It was really hard to have to give up: driving
20. A new hobby I have taken up since my diagnosis is: blogging and reviewing books
21. If I could have one day of feeling normal again I would: Go to the beach and ride the train and see the redwoods and all of nature
22. My illness has taught me: to appreciate the small things and not take them for granted
23. Want to know a secret? One thing people say that gets under my skin is: I have had this happen to me several times and I just want to smack them. “I love you but maybe you are becoming your illness”. First of all, I am accepting my illness that doesn’t mean I am becoming one of those bitter ladies who complains all the time. Accepting that I am ill allows me to move forward and do what I can despite my trach and mobility issues. I probably will write a post about this for invisible illness week.
24. But I love it when people: Smile, talk to me, and take the time to share and allow me to listen and they listen to me. I love it when I am able to engage in relationship with others.
25. My favorite motto, scripture, quote that gets me through tough times is: 2 Corinthians 12:7-9 where God tells Paul that he will not heal him but he will give him all he needs to endure his thorn.
26. When someone is diagnosed I’d like to tell them: I would tell someone who is diagnosed with GPA that you are still valuable and you can do things, the only thing is it will look different than before and that is okay.
27. Something that has surprised me about living with an illness is: That I can still do things and I still have a sense of humor and I can have joy
28. The nicest thing someone did for me when I wasn’t feeling well was: My neighbor made me dinner and brought it over, plus prayer from people.
29. I’m involved with Invisible Illness Week because: Because I want to let people know that you don’t get the whole picture and there is more than meets the eye. Rude and slanderous comments are not helpful in healing.
30. The fact that you read this list makes me feel: Hopeful, perhaps this will allow others to take a different perspective and show love and support for those they don’t understand.