Home » The Magnificent Journey » Auto-immune » 30 Things for Invisible Illness Week

30 Things for Invisible Illness Week

The beginning of September will be another chance to learn and be part of Invisible Illness Week. I’m writing up a big post about my invisible fight. I will be opening up and letting it all out. Here is a meme to satisfy until I post the big one.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: I live with two illness’ technically more than one. Rheumatoid Arthritis and Granulomatosis with polyangitis. I know a mouth full isn’t it?
2. I was diagnosed with it in the year: Officially diagnosised in 2011, but fighting it since 2008
3. But I had symptoms since: 2008 when my throat started closing up.
4. The biggest adjustment I’ve had to make is: not being able to breath normal. Living with doing things in small spurts and resting in between because my throat is like breathing out of a straw.
5. Most people assume: That I can exercise like they can and if I only exert myself I would be able to do it. The answer is no. That is not possible. I can exercise, I just can’t do it at the pace or the way you can.
6. The hardest part about mornings are: just waking up and be able to function. I’m getting better at it.
7. My favorite medical TV show is: I have none.
8. A gadget I couldn’t live without is: My laptop and my peak flow meter and my oximeter
9. The hardest part about nights are: falling asleep.
10. Each day I take __ pills & vitamins. (No comments, please) I take seven pills. I”m down one from last year, prednisone. I also have an IV infusion twice a year.
11. Regarding alternative treatments I: I’m for it. I use essential oils. I like how they smell and relax me. I know nutrition is important and so is moving.
12. If I had to choose between an invisible illness or visible I would choose: neither
13. Regarding working and career: My career is taking care of myself right now. I”m working towards some goals with two of my friends to help others who have Chronic conditions. But some things must be done in the next year or so before that can happen. Also if you live in the cowlitz or clark county areas check out Wellness Works NW my friend Karen who understand Chronic conditions is awesome and compassionate and is willing to work with you.
14. People would be surprised to know: That I have moments when I scream, cry, and get grumpy like everyone else.
15. The hardest thing to accept about my new reality has been: that my throat is not going to be cured. I’m always going to breathe like this.
16. Something I never thought I could do with my illness that I did was: Write, be happy, change my attitude and love Jesus more.
17. The commercials about my illness: I haven’t seen any for the Vasculitis disease I have. But the Rheumatoid arthritis ones make laugh.
18. Something I really miss doing since I was diagnosed is: Breathe, go hiking, enjoy fun activities.
19. It was really hard to have to give up: hiking, breathing.
20. A new hobby I have taken up since my diagnosis is: blogging and I’m loving it.
21. If I could have one day of feeling normal again I would: go to the beach and run and ride horses.
22. My illness has taught me: That a good attitude and being grateful helps me conquer so many things and so does Jesus.
23. Want to know a secret? One thing people say that gets under my skin is: It’s not what they say. It is how they look at me, like I”m an alien and you can see in their faces that they are not understanding or getting my condition.
24. But I love it when people: ask me questions.
25. My favorite motto, scripture, quote that gets me through tough times is: All things are possible. It says this several times in the bible. So it must be true.
26. When someone is diagnosed I’d like to tell them: grieve, laugh, find joy,, and be patient with yourself.
27. Something that has surprised me about living with an illness is: What I can do for my self.
28. The nicest thing someone did for me when I wasn’t feeling well was: Recently, my nephew who happens to be one of my caregivers said to me when I was apologying for the way I had to exercise. I have to use my wheelchair to walk like a walker so I have a place to sit down. I am slow. He said to me. I”m not here for me, I am here for you. That helped.
29. I’m involved with Invisible Illness Week because: It’s important to talk about it and to be open up our struggles.
30. The fact that you read this list makes me feel: sad, hopeful

One Response so far.

  1. Nirmala says:

    I agree with you Jamie, All things are possible. There definitely needs to be more awareness about chronic illnesses like ours which are invisible. Thanks for inspiring and let us keep on fighting!

Leave a Reply

Your email address will not be published. Required fields are marked *

Thank you for leaving your comments. To avoid spam please complete the task below. Have a great day!WordPress CAPTCHA