From Ballet World to Dysautonomia World – Rebecca’s Story

Posted: June 24, 2013 in Dysautonomia, Featured Blogger, Uncategorized
Tags: , , , , , , ,

One of the biggest honors I get to receive is meeting fellow “hidden” dysautonomia teens who not only inspire me, but understand what I am going through on a daily basis.

Today, I am featuring one of my newest treasured friends, Rebecca W as our current featured blogger.  Love her honest responses… especially #26.  Thanks Rebecca!

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Rebecca at MHHA First Annual Anti Prom for Chronically Ill Teens

1. The illness I live with is: POTS (Dysautonomia subtype – Postural Orthostatic Tachycardia Syndrome)

2. I was diagnosed with it: February 2013

3. I first noticed my symptoms when: My legs crumbled after I was sitting and my arms and legs went numb.

4. The biggest adjustment I’ve had to make is:  Not being able to dance everyday.

5. Most people assume: That I am perfectly normal.

6. The hardest part about “not so good” days are: I want to get up and be active but I physically can’t.

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Life before Dysautonomia

7. Prior to me getting sick, I liked to: Do ballet, hang out with friends, be a normal teenager.

8. A gadget I couldn’t live without is:  My android phone

9. The hardest parts about the nights are: Not knowing how you might be the next day.

10. Each day I take approximately 8 pills & vitamins.

11. Regarding alternative treatments I include: physical therapy (aquatic), drinking plenty of fluids (10 glasses of water a day), getting lots of sleep, not getting cold, don’t overdue anything

12. If I had to choose between an invisible illness or visible illness I would choose: Invisible because people will treat you normally.

13. Regarding school, I am homebound/homeschooled/attend at school and I find this: I am half homebound and half at school and I find it hard to not be around my friends all day but I know I can’t physically  handle more.

14. People would be surprised to know: I used to dance 18 hours a week.

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Rebecca at Mik’s Hidden Hearts Teen Social Class: Cake decorating

15. The hardest thing to accept about my new reality has been: I have to change my goals and dreams.

16. Something I never thought I could do with my illness that I did was: Take a two hour Travis Wall class, go to school for half days, choreograph an entire dance for a show

17. I feel that the general awareness about my condition is: Nonexistent. I have to explain it to everyone even doctors. The first thing a specialist said to me when he walked in was “I know nothing about dysautonomia”. And he was an ‘expert’. (He may have been trying to joke around but his humor did not amuse me).

18. Something I really miss doing since I became ill is: Going to ballet everyday, going to school

19. It was really hard to have to give up: ballet

20. A new hobby / goal I have taken up since my diagnosis is: choreography

21. If I could have one day of feeling normal again I would: Dance all day

22. My illness has taught me: Be thankful for the good days

23. Want to know a secret? One thing people say that gets under my skin is: I can’t do it

24. But I love it when people: Give me hugs and say that I inspire them and I’m the strongest person they know.

25. My favorite motto, scripture, quote that gets me through tough times is: “The most beautiful people are the ones who went through the toughest situations in life but still somehow manage to keep a smile on their face, especially if they have a bright personality to go along with that smile” 🙂

26. When someone is diagnosed I’d like to tell them: Don’t give up. Ever. Surround yourself with people who love you because to be honest I’ve never felt more loved than I do now. There will be times when you feel completely alone but you never are.

27. Something that has surprised me about living with an illness is: You become more determined than ever to do pursue what makes you happy.

28. The nicest thing someone did for me when I wasn’t feeling well was: Carry me to bed and lay me down and just held me for hours until I started to feel better.

29. The person(s) who has been there for me and I could not do without is: Mom, Dad, David, friends

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Rebecca center: After diagnosis, instead of dancing using her talents to choreograph.

30. The fact that you read this list makes me feel: Like I’m important and someone cares what I’m going through.

Posted by Mikaela Aschoff with Mik’s Hidden Hearts Alliance.

For more Mik’s Hidden Hearts Alliance updates, check our website at:www.mikshiddenhearts.org or our Facebook page here.

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits

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Comments
  1. Cindy Parker says:

    Beautifully said!

  2. Cindy Parker says:

    Hi Rebecca!
    You are an inspiration! Finding ways to use
    your talents in a different way. Could
    you tell me a little about how you
    homeschool half time, school the other?
    Maybe your mom could contact me if that’s
    better. Keep going!!!

    Thanks!
    Cindy Parker
    cparker3161@cox.net

  3. Rebecca Webb says:

    When I was hospitalized in March I missed a lot of school and had to drop two subjects. I was homebound for four weeks. After that I was feeling a little better and wanted to try to do two classes in school. I talked to my counselors and they arranged it so I stayed on homebound for the rest of my classes but I could go into school for those two. It was great as I could do two classes and have lunch with my friends and then go home and sleep and then my homebound teacher would come and do the rest of my classes with me.
    Hope this helps!! 🙂

  4. Geoff Webb says:

    Rebecca – although I’ve known you your whole life, you have never stopped surprising me with just how strong and determined you are. You are an inspiration to me, and I am a better person by far for knowing you and having you in my life.

  5. carolwarham says:

    All your English relatives are so proud of you. All our love Aunty Carol

  6. Gemma banks says:

    Hi Rebecca
    It’s great to hear how well u r doing and really making the most of what u can do! I didn’t realise how much it has affected everything u do but we are thinking of u over here like Aunty carol said and hope u continue to be able to do what u want to do! Lots of love Gemma, Marc, Ella and bobby! Xxxxxx

  7. Rebecca Webb says:

    It means a lot that everyone is thinking of me. Mikaela’s group has helped so much in inspiring me to keep fighting and not give up. I realized that there are other people out there with this and are experiencing the same things as I am. They give us amazing opportunities like going to a prom and being able to choose a gown making me feel special and cared for. Right now I’m back at school for 5 out of my 7 classes which is a huge improvement from April. Everyone is so supporting and caring and I’m really thankful to everyone here and in England who are helping me get through this!

  8. Aunty Trish says:

    Your blog has really shown us here in England how much your condition has affected your life and we are sooo proud of you for the way you have come back and fought it and not let it beat you. We are all thinking of you with love and pride – you are an inspiration!!! xxxx

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