Saturday, September 8, 2012

30 things you may not know about my invisible illness

I took the idea from WEGO Health's facebook page, it is from Lisa and you can read her story here.

And here we go:

1.The illness I live with is: Crohn’s disease

2.I was diagnosed with it in the year: 2003

3.But I had symptoms since: earlier that same year that I remember, perhaps in early 2002 though.

4.The biggest adjustment I’ve had to make is: before my recent surgery, every attempt to leave the house was like a well thought out military maneuver.

5.Most people assume: if you change your diet Crohn’s disease is cured

6.The hardest part about mornings are: finding motivation. The symptoms of Crohn’s disease suck every last ounce of it out of you – there have been times I have lain on the bathroom floor unable to make it back to my bed.

7.My favorite medical TV show is: House

8.A gadget I couldn’t live without is: My Keurig, does that count as a gadget?

9.The hardest part about nights are: actually sleeping. Your guts don’t stop once you fall asleep, it is a 24/7 thing

10.Each day I take about 20ish pills at the height of my illness and during a flare – add in an infusion or injection too

11.Regarding alternative treatments : I have been battling this for 9 years, I’ve tried damn near everything to feel “better” but people forget Crohn’s doesn’t go away! I prefer to do my own research not get advice

12.If I had to choose between an invisible illness or visible I would choose: invisible, because only I know how weak I really am

13.Regarding working and career: it was very difficult to hold a job with frequent doctor’s appointments and lengthy intermittent hospital stays.

14.People would be surprised to know: I am a non-compliant patient. Meaning, when I start to feel better I stop taking my medication. I USED TO BE THAT WAY - I learned my lesson the hard way and follow doctor’s orders to a “T” now.

15.The hardest thing to accept about my new reality has been: watching every single part of my body, come down around me – colon, immune system, skin, gynecological, hair, weight

16.Something I never thought I could do with my illness that I did was travel alone with my kids. They are boys – I need to go to the bathroom A LOT, as they got older it got harder to coax them into the ladies room to wait for me!

17.The commercials about my illness: are nothing like reality. They are very deceiving about most illnesses I think.

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

19.It was really hard to have to give up: food! I love to eat.

20.A new hobby I have taken up since my diagnosis is: since surgery it is blogging for sure.

21.If I could have one day of feeling normal again I would: do P90x or workout really hard. That would mean I was fully nourished and rested.

22.My illness has taught me: to always live in the moment b/c you never know when your moment will be over.

23.Want to know a secret? One thing people say that gets under my skin is: You eat all the time!! I eat throughout the day small snacks b/c I don’t have a COLON!

24.But I love it when people: research my disease on their own and send me links to different things, fashion – awareness items, etc. Or when they call and talk to me in medical words I know they care b/c they went out and sought information on their own.

25.My favorite motto, scripture, quote that gets me through tough times is Everything happens for a reason. The last 9 years have no been easy ones – but had I not been through them I wouldn’t be the advocate I am striving to be and I probably wouldn’t have my bestie.

26.When someone is diagnosed I’d like to tell them: You are NOT alone! Seek the information you desire and then soak it up. Ask questions, ask for referrals, get on the internet!

27.Something that has surprised me about living with an illness is: I’m not sure how to answer this. I wasn’t expecting to have an illness so I didn’t have any expectations of living with it.

28.The nicest thing someone did for me when I wasn’t feeling well was: There are too many to list b/c I have some of the most amazing people around me – taking my kids for an afternoon so I could sleep, sending me a “sockgram”, sending handmade cards, cooking for my family….

29.I’m involved with Invisible Illness Week because I want to raise awareness for IBD.

30.The fact that you read this list makes me feel hopeful that I have reached one more person. One more person may google IBD and have new knowledge. One person may share this post, and then that person shares, and that person shares…and it’s a big awareness bonanza!

So there you have it. I'd love to hear comments - or better yet, I'd love to hear that you googled and learned something you didn't know about IBD, whether it is Crohn's or Ulcerative Colitis. If you are so touched that you want to help find a cure for Crohn's and Colitis, you can hop on over to the Take Steps San Antonio-Colliers' Crohnies page and pledge one of our walkers on October 6. Every.single.penny.counts in finding cures and treatments as well as resources for peeople with IBD!

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