Sunday, October 16, 2011

30 Things About Me...


1. The illness I live with is: Myalgic Encephalomyelitis and POTS (Postural Orthostatic Tachycardia Syndrome)
2. I've been sick since: November 24, 2010. 
3. But I've had health issues since: January 2008.
4. The biggest adjustment I’ve had to make is: EVERYTHING. Literally, the only constant in my life has been my family and my best friend. But, change isn't always for the worst.
5. Most people assume: I limit my activities by my own choice. 
6. The hardest part about mornings are: opening my eyes.
7. My favorite medical TV show is: House. (Dr. House, where are you?!) & Scrubs. JD is adorable.
8. A gadget I couldn’t live without is: my cell phone. (I'm a teenager, duh.)
9. The hardest part about nights is: not being able to sleep, and being alone with negative thoughts. Dealing with the pain.
10. Each day I take (up to) 61 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: recognize them as being very beneficial! Drugs and medications don't fix everything. Our bodies came from nature, why not try natural remedies? 
12. If I had to choose between an invisible illness or visible I would choose: invisible. I'd hate being the "sick girl" everywhere I went.
13. Regarding working and career: I'm going to take on the very illness that has taken over me.
14. People would be surprised to know: I still sing in the shower.  
15. The hardest thing to accept about my new reality has been: the fact that I can't "push through" it.
16. Something I never thought I could do with my illness that I did was: help with a successful benefit show, Hummingbirds. We raised almost $1000 dollars for research for ME/CFS in one night!
17. The commercials about my illness: mostly focus on Fibromyalgia. & the actors are all 40 years older than me. 
18. Something I really miss doing since I was diagnosed is: running.
19. It was really hard to have to give up: running, my job, my youth orchestra, and pineapple.
20. Some new hobbies I have taken up since my diagnosis is: blogging, pill popping, guitar, and yoga.
21. If I could have one day of feeling normal again I would: run. I would run for miles and miles and miles. Forrest Gump style. 
22. My illness has taught me: mental strength, discipline, and self acceptance. (This is a work in progress.)
23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick". 
24. But I love it when people: do research of their own and ask me questions!
25. My favorite motto, scripture, quote that gets me through tough times: I have many, but I always remember that it could be worse. "Whatever was not planned by me, was planned by God." -Edith Stein
26. When someone is diagnosed I’d like to tell them: "Be persistant, be disciplined, and don't you dare give up. Let the good days be good, and the bad days be bad."
27. Something that has surprised me about living with an illness is: the support and feedback I've received from people I barely knew!
28. The nicest thing someone did for me when I wasn’t feeling well was: not asking how I was feeling, distracting me from the pain/sickness. I love hugs.
29. I’m involved with Invisible Illness Awareness because: so many can't voice their invisible illnesses like I have the opportunity to. 
30. The fact that you read this list makes me feel: hopeful! Hopeful that people will learn to understand. Not just about an invisible Illness, but about tolerance in general. You never know what people are going through. Everybody's got something. 


  1. What an awesome list, Sara!! Very creative and informative. I sing in the shower, too - nothing like belting out a favorite song, right?

    Hey, I noticed that some of the symptoms listed in your sidebar are very common in Lyme and other tick infections. For instance, night sweats are a very common sign of babesia (one of the tick infections my son has). Headaches, brain fog, and nausea are very common in Lyme. Have you been tested for all of those infections yet? The tests aren't 100% accurate, but they are a good starting point. The large number of symptoms you have also is a clue that there could be something more than ME/CFS going on.

    Just a thought! Here is a blog post I wrote about tick infections and their symptoms:

    If you do have other infections, your ME/CFS won't get better until you get treat the infections. Maybe you and your mom can look into this.


    (PS I hope you don't mind my butting in and passing that info along)

  2. Sue,

    Thanks so much for the tip! I was tested once, but it could have been a false negative. We're definitely going to be looking more into it. I'll be getting some more blood tests done soon. Thanks for reading and commenting! & never hesitate to send more information my way! I truly appreciate it.

    Thanks again,

  3. Sara,

    Your blog touched me. I can relate and understand all too well as I have two teens impacted by these conditions. The blog is a great way to express your feelings and spread awareness. Keep up the good fight - you are not alone - one day we will conquer these illnesses!


  4. Hi Sara - What a great blog! I am always looking and communicating with others who are going through this stuff. My 16 year old daughter has CFS/FM/POTS. I love that you have shared your treatments (we are always stuggling with those!) These illnesses and how they affect one are so hard to explain to others. thank yo u for taking the time to try to explain what it is like. I am always sharing info like this with family and my daughters tutors - too hard to explain the gravity of these in a few words. so, thank you so much for doing this for all those suffering!!! Hope y ou are feeling better and have a very Happy Thanksgiving!


  5. Sara,
    You are an AMAZING, articulate, strong young woman! I LOVED this post, and will pass it on to my 23 year old son who also has CFS (many of your statements reminded me of him). I esp. loved #26. I believe without a doubt that you young teen and adults with invisible illnesses are the strongest people in the world. Keep writing, I'm anxious to hear more!

  6. I think your blog is amazing. Thank you for caring enough about others with this illness to share your life with other people out there in the "blogosphere". I have a daughter aged 12 suffering with this illness and to be able to show her a positive role model such as yourself is a blessing indeed. For her, knowing that there are other kids out there who understand what she is going through is so important because no one else does, not really, and it is so hard for her to explain it.

  7. thank you for all the lovely comments! I am so appreciative of your support!