Dysautonomia Teens – Be one of our featured bloggers!

Posted: February 23, 2013 in Uncategorized
Tags: , , ,

Calling all Hidden Teens!  

We would like YOU to be one of our featured guest bloggers!  

ImageBecause it is important to us at Mik’s Hidden Hearts Alliance to put not just a “face” with Dysautonomia, but also a personal story, we will be featuring fellow MHHA teens who will be our guest bloggers! 

We would love to hear from you!  Fill out the questions below, include picture(s) and email to:  info@mikshiddenhearts.orgA big thank you to fellow blogger Dysautonomiac for the question inspiration : )

 

1. The illness I live with is:

 

2. I was diagnosed with it:

 

3. I first noticed my symptoms when :

 

4. The biggest adjustment I’ve had to make is: 

 

5. Most people assume:

 

6. The hardest part about “not so good” days are:

 

7. Prior to me getting sick, I liked to:

 

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

 

9. The hardest parts about the nights are:

 

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

 

11. Regarding alternative treatments I include:

 

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

 

13. Regarding school, I am homebound/homeschooled/attend at school and I find this:

 

14. People would be surprised to know:

 

15. The hardest thing to accept about my new reality has been:

 

16. Something I never thought I could do with my illness that I did was:

 

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

 

18. Something I really miss doing since I became ill is:

 

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

 

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

 

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

 

22. My illness has taught me:

 

23. Want to know a secret? One thing people say that gets under my skin is:

 

24. But I love it when people:

 

25. My favorite motto, scripture, quote that gets me through tough times is:

 

26. When someone is diagnosed I’d like to tell them:

 

27. Something that has surprised me about living with an illness is:

 

28. The nicest thing someone did for me when I wasn’t feeling well was:

 

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

 

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

 

Posted by Mik’s Hidden Hearts Alliance

 

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Comments
  1. University of Houston student with dysautonomia says:

    1. The illness I live with is:

    Autoimmune Autonomic Ganglionopathy (AAG)

    2. I was diagnosed with it:

    January 2012

    3. I first noticed my symptoms when :

    In mid 1994, at five years old.

    4. The biggest adjustment I’ve had to make is:

    Accepting my limitations.

    5. Most people assume:

    That I can go back to school, work, or regular activities after doctor’s appointments, hospitalizations or treatments (such as intravenous immunoglobulin or plasmapheresis).

    6. The hardest part about “not so good” days are:

    Not being able to do the things I love, or help my friends or family out.

    7. Prior to me getting sick, I liked to:

    Study electrical engineering, write computer programs, work, socialize with friends, exercise, run, swim.

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

    My computer

    9. The hardest parts about the nights are:

    Being alone and away from my friends, who are almost graduated with their degrees in engineering.

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

    11. Regarding alternative treatments I include:

    Compression garments

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

    Invisible

    13. Regarding school, I am homebound/homeschooled/attend at school and I find this:

    Homebound, and I find this devastating, as school was my life.

    14. People would be surprised to know:

    I have a very rare disease, and there is only one lab in the United States that tests for this disease – the Mayo Clinic Laboratories.

    15. The hardest thing to accept about my new reality has been:

    Having to withdraw from school, quit jobs, and decline internships due to being in and out of the hospital, when my friends were working and going to school.

    16. Something I never thought I could do with my illness that I did was:

    Meet other people with my disease and spread awareness.

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

    Very poor.

    18. Something I really miss doing since I became ill is:

    Exercising.

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

    Working.

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

    Volunteer at Bookshare.org, digitizing books for people who are unable to read print or hold a book.

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

    Exercise.

    22. My illness has taught me:

    There are things that are out of my control, and I have limitations.

    23. Want to know a secret? One thing people say that gets under my skin is:

    Are you sure you cannot do this?

    24. But I love it when people:

    Try to understand.

    25. My favorite motto, scripture, quote that gets me through tough times is:

    “It is just the way it is”

    26. When someone is diagnosed I’d like to tell them:

    Accept that this disease is out of your control. Living with autoimmune autonomic ganglionopathy is a day to day challenge and you must recognize your limitations.

    27. Something that has surprised me about living with an illness is:

    How unpredictable autoimmune dysautonomia has been, even with treatment.

    28. The nicest thing someone did for me when I wasn’t feeling well was:

    You are determined.

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

    * My mom and my brother, and
    * My engineering friends who went through the same courses with me, who were understanding, even when I was unable to be there for them.

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

    Longing for better days.

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