Wednesday, September 10, 2014

30 Things Meme

And the lists continue...This week I am blogging for Invisible Illness Awareness Week. Something I randomly came across two years ago during a very dark time. (That's when I had all the heart problems....those 5 days in the ICU...yeah...)

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:

30 Things About My Invisible Illness You May Not Know

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.


  1. Thank you so much for this. I know it's from a while back but I found it at a perfect time for me. July 29, I was officially diagnosed with Scleroderma. I spent the past year being told they were "really sure" I had Lupus. My Nanna has Lupus, it was a no-brainer right? Finally had the right blood tests done to get my real answer.
    I guess there is comfort in knowing for sure. At the same time, I'm scared, angry, sad, anxious and frustrated. Already, I can't do the things I used to.
    I'm a mom of 3, a certified nursing assistant, a wife and a college student. Or I was. My boss called me last week and said I was out of sick time and if I couldn't come back by the next day, it would be better for me to quit so that "when they found a way to make me feel better" I could reapply. It was that or they fire me and I'm ineligible to reapply. This was THE job I wanted when I was in my CNA training. Taking care of Veterans. I love my patients. The last time they saw me I was being wheeled out by paramedics due to severe chest pain and unstable vitals.
    Aside from my love of my job, I was the main bread winner in my house. This has wreaked havoc on my household. I'm supposed to start a new semester toward my nursing degree in 2 weeks. I'm not sure how I'm gonna pull it off.

    I know this is long winded, but when I read this, I felt some relief. My family and friends are loving, but they have no idea what I am feeling and how frustrated and scared I am. I was always Wonder Woman and they are used to me just pushing through what ever life throws my way. This is the hardest thing I've ever faced and I don't feel very wonderous. At least now, I feel less alone.

    1. Hi Kitty! I am so sorry you are having to go through this. I wouldn't wish it on anyone in the world- not even my worst enemy. Sorry it's taken me so long to respond. I've had a few new struggles of my own and have been taking a break from social media and the web etc. But things are finally settling down and I feel somewhat in control again so here's to hoping it lasts.

      It's funny to me that so many of the women I speak with and that reach out to me considered themselves "wonder women" before being diagnosed. Seems like it's the universe's way of telling us to slow down. I know I have had to! And it's been for the better.

      I know it may not seem like it now, but this is probably exactly what you needed. I know how tough leaving or losing the "dream job" can be...I've had to do it several times. But in the end, it's been the better outcome. It's given me time to write, focus on my family and friends, and just learn how to live with my illnesses. Being sick is a full time job in and of itself and it can be exhausting! When I give myself permission to be less than 100% in other areas of my life in order to focus on my health and well-being I'm a much better person overall.

      Everything you're feeling is NORMAL and it's ok to feel those things. Some days will be better than others...some YEARS will be better than's a never ending roller coaster, but I promise you'll learn to live in this "new normal." Just remember to slow down, take breaks, rest when you need to, rely on your support system (without feeling guilty about it!), and find the joy in things. I may not be living the life I imagined...but in some ways it's better. (Cheesy to say, but it's true).

      Now don't get me wrong...I've had and will continue to have my struggles. I have recently been suffering from depression and am just now feeling like there's some hope and happiness to be found. For awhile it felt like I was just trying to survive...I finally feel like I can LIVE again..pursue new dreams and do things I never thought of (getting an MFA in creative writing or a Ph.D in women's studies for example) But it's one baby step at a time. Everything about my illnesses still frightens me at times, but none of it has killed me I figure it's surpassable.

      I know you'll find a way to make your dreams happen, even if it's not the way you'd planned. This is just a slight detour, but you'll find your way back and you'll be a stronger and wiser person for it.

      I hope you keep in touch...I do plan on writing again and trying to stick with it this time. I'm glad you found my blog when you needed it, makes me feel good to know that I've helped someone in some way.

      Be well!! Please keep in touch!