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30 Things About My Invisible Illness

People have been posting this on Facebook so I thought I'd do one!  (I stole some others' answers though because I couldn't have said it any better)

1. The illness I live with is: Cushing's disease then Adrenal Insufficiency. I had Cushing's disease for 7-10 years and had unsuccessful pituitary surgeries in December '09, and February '10. I had a bilateral adrenalectomy in September, which left me with adrenal insufficiency obviously.

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 2000

4. The biggest adjustment I’ve had to make is: saying no.  To work, friends, family.  It's been hard not being able to do the things I would like to do.

5. Most people assume: that I am just fat and lazy.  My body is still getting used to lower doses of steroids and it will take time for me to loose the weight and build up my strength again.

6. The hardest part about mornings are: EVERYTHING.  I am in pain when I get up every morning and it takes me a while to get going, especially since I haven't been sleeping well.

7. My favorite medical TV show is: Mystery Diagnosis.  I love trying to figure out what's wrong before they tell you, and the few episodes with Cushing's Disease have been very emotional for me to watch.

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

9. The hardest part about nights are: not being able to sleep and just being uncomfortable all night.  I don't remember the last time I slept more than 3 hours at a time.  I have trouble falling asleep, then it seems like as soon as I fall asleep I have to get up to take my medicine, then I go back to sleep and then my alarm goes off for work.

10. Each day I take __ pills & vitamins: 6 pills in the morning, 3 in the afternoon, 2 before bed...and counting.  I might need to add thyroid medication in the near future.  All this at 23 - who knows how many pills I'll be taking later on in life!  But, it's the least of my worries at this point.  I'll take 200 a day if that's what will keep me alive and well.

11. Regarding alternative treatments I: am very open to them, I took a Chinese Medicine class in college and think with the right mindset, they can really help.

12. If I had to choose between an invisible illness or visible I would choose:Definitely visible.  I just wish people knew and I didn't have to feel like people are judging me for my size or what I can and can not do.

13. Regarding working and career: I love my job but I feel like my life has been on hold for the last few years dealing with all of this.  I'm anxious to feel better and get everything sorted out so I can go back to school and fulfill my dream of being a physician.

14. People would be surprised to know: that I have already heard any advice that they might be tempted to tell me to help me "get better". Be my friend. Ask questions to understand my disease. But don't tell me your HCG diet plan or weight loss surgery will cure me. (I stole this answer from someone else - but it's so true!)

15. The hardest thing to accept about my new reality has been: I haven't lost weight or felt better yet.  Things have gotten a little harder since my adrenalectomy - I'm more tired, have to take more medications, and the bad things haven't improved too much yet, but I'm confident that it's a long process and a year from now I'll look back and be in a better place.

16. Something I never thought I could do with my illness that I did was: go through 3 surgeries in less than 10 months!  And get out of the hospital quickly each time.  I have also learned SO much.

17. The commercials about my illness: do not even exist.  No one has heard about Cushing's or adrenal insufficiency until I tell them about it.

18. Something I really miss doing since I was diagnosed is: being able to go out with friends and not worry about how I look, being too tired, having to be close to a bathroom, having to take a big bag with me everywhere I go...

19. It was really hard to have to give up: my can-do attitude. Now it's a "I'm not sure I can do that, let me get back to you in a few days to see if I have enough spoons." (stole this but YES!)

20. A new hobby I have taken up since my diagnosis is: Naps. Napping is a good hobby. My concentration is mostly shot because of this disease, so I've not been able to pick up anything new or old. I just don't have the mental stamina to do most things I used to.  (stole it again!)

21. If I could have one day of feeling normal again I would: go visit friends that I haven't seen in over 2 years because of their busy lives and my inability to go out and do normal things.

22. My illness has taught me: to not judge people by how they look, and it has taught me so much about endocrinology.

23. Want to know a secret? One thing people say that gets under my skin is: "How are you doing? You look great!"  this sounds weird but EVERY TIME someone says this, I cry.  I can't control it, I just cry.  I might look OK but I feel horrible and it's hard to tell people "I'm not doing so well" when all they want to hear is "I feel great too!"

24. But I love it when people: listen to me, tell me about their lives, and do fun things with me when I have the energy, and help me out with everyday things that are physically difficult for me to do now.

25. My favorite motto, scripture, quote that gets me through tough times is: "Never Give Up"  It's on one side of the medical alert bracelet I just ordered and I think getting to look at that every day instead of what makes me "sick" will be good for my mind.

26. When someone is diagnosed I’d like to tell them: you are going to have to be your own expert.  Research and learn about every aspect of the disease and don't stop after 1, 2, even 10 doctors tell you you're crazy.  It IS all in your head, but not the way they're telling you!

27. Something that has surprised me about living with an illness is: how easy it is for people to be very kind and supportive the first time around, but the second and third times it seems like most people forgot about me and thought it wasn't as big of a deal, when in reality it was MORE emotional and physically difficult.

28. The nicest thing someone did for me when I wasn’t feeling well was: listen to me.  I don't want or need anyone to fix anything for me(though that would be nice) but I do need someone to listen when I've had a horrible day.

29. I’m involved with Invisible Illness Week because: I want to do whatever I can to make sure that non-ill people are made aware of Invisible Illnesses and the people who suffer from them are REAL PEOPLE WITH REAL FEELINGS, and are NOT just inconvenient burdens who can be set aside out of sight and therefore out of mind.

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

Find out more about National Invisible Chronic Illness Awareness Week at www.invisibleillness.com

Comments

  1. This is great. Danielle! Can I add it to the others at http://www.cushie.info/wiki/index.php?title=Invisible_Illness

    Thanks either way :)

    ReplyDelete
  2. Thanks, Danielle! It's at http://www.cushie.info/wiki/index.php?title=Living_with_Cushings4 :)

    ReplyDelete
  3. I cried reading your list!! It took over 2 years to find what was wrong with my mom and another 4 years begging doctors to test her for Cushings. After the removal of a tumor on her pituitary gland- her adrenal glands didn't kick in for 2 and a half years. We always have the saying God doesn't help those who don't help themselves as our strenth. How many people have cushings and don't know about it??

    God Bless you for being here to teach others

    ReplyDelete

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