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!
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.
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.
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
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.
We help teens and their families who have Dysautonomia and other life changing hidden illnesses.
Dysautonomia Awareness – Support Group – Socials – Hope Kits