Invisible Illness Week – 30 Things you did not know about Lupus & Me

30 Things you did not know about my Invisible Illness: Lupus & ME

1. The illness I live with is:

Lupus

2. I was diagnosed with it in the year:

August 2010

3. But I had symptoms since:

2006

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

Getting use to chronic pains, Constant hospital visits, Taking lots and lots of pills, surgery, being bed bound, finding something new that my lupus has caused.

5. Most people assume:

I am very healthy and I am all happy and that I am not really in pain.

6. The hardest part about mornings are:

Fighting to get up, all the pain in the morning is awful I hate mornings with a passion.

7. My favorite medical TV show is:

I have no idea, i love the ID channel lol and cartoons.

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

My IPAD

9. The hardest part about nights is:

Insomnia, pain, knowing that I am not getting enough sleep and dreading the pain that the morning will bring.

10. Each day I take __ pills & vitamins:

I’m taking 10 pills. I should be taking around 15+ but my tummy has not been doing so well.

11. Regarding alternative treatments I:

I’m down for anything that will help

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

I would chose neither, I would chose to be healthy. But the again I would stay with that I have I feel that God has given me this path and I would rather have me walk it then someone I love.

13. Regarding working and career:

Worried. Because my illness slows me down, it makes me weak. I worry I might not make it to a place where I want to be or do an amazing job. I do not feel good enough.

14. People would be surprised to know:

The seriousness of my disease, how much stress and panic I am under. My range of emotions and health. My life is a roller coaster.

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

I’ll never have what you call a “normal” life, and to have a family in the future scares me because I do not feel I am capable of providing for my family. Will I make a good mother/wife? Do I make a good girlfriend/friend/daughter/sister now?

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

Walk a 5k, work, travel

17. The commercials about my illness:

Not really any commercials out there.

18. Something I really miss doing since I was diagnosed is:

Sleeping, going out on the weekends, waking up feeling rested.

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

My weekends, fatty foods, McDonald french fries, my hair

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

Bringing Lupus awareness

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

GO crazy with joy and have a great day, bbq party at my house!

22. My illness has taught me:

How to appreciate life, appreciate the small things. It’s amazing what beautiful  things surrounds us everyday.

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

Well at least its not cancer? or I do not think you are sick or ITS NOT LUPUS or compare my illness to someone elses. I have wanted to slap so many in the face.

24. But I love it when people:

Laugh, joke and ACCEPT the fact that I have Lupus and HUGS i loooooove HUGS! just not too tight my joints my be hurting.

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

Don’t have one at the moment.

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

Things aren’t as bad as they seem, and there are people out here going through the same things.

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

How caring people can be

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

Calling and texting me when I am in the hospital and sending me words of encouragement.

29. I’m involved with Invisible Illness Week because:

I want people to know they are not alone.

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

Good about myself and this movement, and hoped you learn something new.

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5 Comments Add yours

  1. Anonymous says:

    You go girl! In the words of Drake, I’m so I’m so I’m so proud of you!

  2. helloally says:

    Thank you so much!!! 😀

  3. Emily says:

    We love you, Ally! 🙂
    Love, Emily, Jason, Aidan and Connor

  4. Alejandra go says:

    Ally, it is a blessing having you as our daughter. Be faithful and courageous. Do not hate, appreciate! Know that you are a good and precious daughter and a sweet and nice sister. Since you are good to your family, we are positive that you are also a good friend and great girlfriend. That means, you will be a wonderful wife and an excellent mother when God sends those blessings to you. Meanwhile, count your blessings! We love you so much, Dad and Mom.

  5. Andy & Grace says:

    We are so proud of you, WmissU, WloveU….your godparents from spain……huggs andd besines..Andy & Grace .;-)

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