Dysautonomia life: Hidden Teen Lexi’s Story

Posted: June 7, 2013 in Uncategorized
Tags: , , , , ,

Because it is important to us at Mik’s Hidden Hearts Alliance to put a “face” with Dysautonomia in order to spread Dysautonomia Awareness and to give our hidden teens a voice, this week we are featuring one of our Hope Kit Recipients answers to the questions below.  

A big thank you to Lexi P. of Sugarland, Texas for her willingness to share her thoughts and help MHHA reach out to other teens.

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Lexi on a great day! – at MHHA Anti Prom

1. The illness I live with is: Dysautonomia, EDS, POTS (subtype of Dysautonomia), gastroparesis, costrochondritis, and NCS (subtype of Dysautonomia)

2. I was diagnosed with it in 2010.

3. I first noticed my symptoms when I had a reflex autonomic seizure at age 7.

4. The biggest adjustment I’ve had to make is  drinking a lot of Gatorade and taking a lot of pills.

5. Most people assume that I am healthy.

6. The hardest part about “not so good” days are missing out on everything around me and getting behind in school.

7. Prior to me getting sick, I liked to do competitive cheer.

8. A gadget I couldn’t live without is my phone.

9. The hardest parts about the nights are having stomachaches.

10. Each day I take approximately 16 pills & vitamins. 

11. Regarding alternative treatments I include Pilates.

12. If I had to choose between an invisible illness or visible illness I would choose being invisible.

13. Regarding school, I am online schooled and I find this really convenient.

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Lexi on a not so good day

14. People would be surprised to know just how bad I feel every single day.

15. The hardest thing to accept about my new reality has been having to deal with it.

16. Something I never thought I could do with my illness that I did was doing weird stretchy things with my joints.

17. I feel that the general awareness about my condition is very poor.

18. Something I really miss doing since I became ill is having good days.

19. It was really hard to have to give up being active.

20. A new hobby / goal I have taken up since my diagnosis is Pilates and BBYO (youth organization).

21. If I could have one day of feeling normal again I would sit out in the sun all day without worrying about getting dehydrated.

22. My illness has taught me to never give up.

23. Want to know a secret? One thing people say that gets under my skin is that when people say  I look fine to them when  I don’t feel good.

24. But I love it when people treat me normally.

25. My favorite motto, scripture, quote that gets me through tough times is what doesn’t kill you makes you stronger.

26. When someone is diagnosed I’d like to tell them don’t hide like I did in the beginning; make friends with others who have the same illness.

27. Something that has surprised me about living with an illness is I find ways to work around it.

28. The nicest thing someone did for me when I wasn’t feeling well was making me laugh and smile.

29. The person(s) who has been there for me and I could not do without is my mom.

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Lexi having fun at Anti Prom with friends : )

30. The fact that you read this list makes me feel hopeful.

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Comments
  1. Sheri says:

    I think it’s so important to share the teen’s perspective on their illness! Thank you for sharing my daughter’s story and giving her a voice! She hopes that her story helps other teens in her situation!

  2. annie says:

    Great job Lexi – My son Joseph has POTS and EDS. I read your interview and there are so many similarities, its unbelievable. I hope you have continued improvement and stay positive. stay strong

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