Well, IIAW saved my life then, allowed me to make really big life altering decisions that have shaped the last two years and so I hope that with my blogging and my contributions I can do the same for someone else out there who is suffering, questioning, agonizing, dreaming and hoping.
Last year, they re-published two of my blog posts which you can find HERE. Please, read, share and enjoy them!
This year they will be publishing another one, and once they do, I'll be sure to share that link with you all as well!
In the meantime, I am taking part in their 30 Things Meme...the creator of IIAW has asked us bloggers to respond to 30 questions so that our readers can get to know us better, so here are the questions and my answers:
1. The illness I live with is: Scleroderma
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: Probably 2006ish
4. The biggest adjustment I’ve had to make is: Slowing down and giving up the career I love.
5. Most people assume: I am good at "keeping it together"
6. The hardest part about mornings are: Not knowing if I'll have the energy for the rest of my day until I get up.
7. My favorite medical TV show is: House!
8. A gadget I couldn’t live without is: My Laptop
9. The hardest part about nights are: Having to sleep at 90degree angle- blegh
10. Each day I take __ pills & vitamins. (No comments, please)- Um, as of yesterday...9
11. Regarding alternative treatments I: HAVE. TRIED. THEM. ALL. Some work (acupuncture helped with GERD, and insomnia, yoga helps with mobility) Some don't (homeopathic remedies required taking MORE pills than my stomach could handle, made me physically ill so I had to stop them)
12. If I had to choose between an invisible illness or visible I would choose: I kind of have both now. Most of my symptoms you can't see, but the Raynaud's has caused me to lose a fingertip so that's visible...I think I'd choose invisible still. They each have their own set of challenges.
13. Regarding working and career: I work from home because it allows me to not feel guilty about doctor's appointments and I can work from my bed when I need to. I wish I could work a normal job and see people everyday but it's too stressful and stress kills. I don't wanna die...or almost die again.
14. People would be surprised to know: I am very angry most of the time.
15. The hardest thing to accept about my new reality has been: I will never feel "normal" again. I have to consider how my health will be affected by EVERYTHING I do, from taking a shower, to changing jobs, to starting a family, to what I eat, how I sleep...EVERY little decision revolves around my diagnosis.
16. Something I never thought I could do with my illness that I did was: Give others hope.
17. The commercials about my illness: HA! WHAT COMMERCIALS?!
18. Something I really miss doing since I was diagnosed is: Swimming. Acting.
19. It was really hard to have to give up: Foods I love. Teaching theatre..
20. A new hobby I have taken up since my diagnosis is: Fashion. Baking. Volunteering.
21. If I could have one day of feeling normal again I would: Swim. Zipline. Eat EVERYTHING. (Practice making babies with my hubs...for hours)
22. My illness has taught me: Life is not easy, we all have scars, I can break and be put back together. To be patient with myself. To be thankful I have loved ones by my side. That living one day at a time isn't easy but it's possible. That life is what happens when you're busy making other plans. I can't control everything.
23. Want to know a secret? One thing people say that gets under my skin is: "How are you feeling?"- with that sad look in their eyes like they think I could fall over and die at any minute.
24. But I love it when people: Ask me real questions about my illness, show up to support me at my events, readings, walks etc.
25. My favorite motto, scripture, quote that gets me through tough times is: "I may not have gone where I intended to go, but I think I am where I was intended to be."
26. When someone is diagnosed I’d like to tell them: Hold on, don't worry, your life is NOT over. Take the time to grieve the loss of your old self, then take the time to love and accept this new you, and this journey. Be patient with yourself, you aren't going to know what to do. You will cry. You will be angry. You will be confused. This is all ok. Feel what you need to feel. Then, pick yourself up and move forward. Don't be afraid to make decisions, stand your ground (especially with doctors and stubborn family members) and get the help, treatment, love and respect you still deserve. You are still a human being worthy of having it all- even if you need assisted devices or prescription drugs to get there.
27. Something that has surprised me about living with an illness is: How many other people have illnesses as well that they are willing to share about once I share. And yet, that talking about illness is still so stigmatized, like people- GET OVER IT! Awareness is key!
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me dinner, made me food without asking. (Hubby does it, Mom does it, and a friend did it once)
29. I’m involved with Invisible Illness Week because: It saved my life once, and I hope to do the same for someone else.
30. The fact that you read this list makes me feel: HAPPY! Cared for. Loved. Like a cupcake.