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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Friday, October 21, 2011

My 30

1. The illness I live with is: Endometriosis, Interstitial Cystitis, 2. I was diagnosed with it in the year: 2005 for endo, 2010 for IC 3. But I had symptoms since: 2001 for endo, 2008 for IC 4. The biggest adjustment I’ve had to make is: Not being able to be "normal". Achievements such as finishing college, having a job, having a social life are things that when others speak of or ask me about leave me fighting to keep it together. 5. Most people assume: No idea. Can't say for most people only one who has spoken their mind and they don't think i can be in that much pain or possibly have constant pain, and lecture about using pain medication yet didn't see a problem with taking theirs with a bottle of wine. 6. The hardest part about mornings are: sitting up to get moving, often i can be awake in bed without any pain when i first wake up since its as though the rest of me isn't fully awake, but once i move the nerves wake up and my reality comes rushing back. 7. My favorite medical TV show is: Grey's Anatomy 8. A gadget I couldn’t live without is: Toshiba Laptop, TENS unit, PS3 9. The hardest part about nights are: thinking back over the day and thinking i didn't mange to do anything useful or worthwhile. 10. Each day I take __ pills & vitamins: currently 1-5daily 11. Regarding alternative treatments I: liked acupuncture and many other things but $$ so right now DIY acupuncture and massage now and then along with herbs as needed. 12. If I had to choose between an invisible illness or visible I would choose: invisible since that's what i know. 13. Regarding working and career: sole crushing.... no idea, if in years able to work well, and drive perhaps a dula. 14. People would be surprised to know: That the thought of giving up occurs to me now and then, yet i am not depressed 15. The hardest thing to accept about my new reality has been: having all my goals postponed 16. Something I never thought I could do with my illness that I did was: last this long still smiling 17. The commercials about my illness: there are none that i have seen 18. Something I really miss doing since I was diagnosed is: diagnose date didn't make the change, the day the pain came did. but so many things. 19. It was really hard to have to give up: my education and physical strength. 20. A new hobby I have taken up since my diagnosis is: crafting, sewing/beading/wood carving/card making. 21. If I could have one day of feeling normal again I would: go camping, walk/hike the trails and horse back riding. 22. My illness has taught me: things that i would rather keep to myself. 23. Want to know a secret? I will never get over the heartbreak of having a hysterectomy. 24. But I love it when people: try to work with my reality (Anne and Jackie are great at that) 25. My favorite motto, scripture, quote that gets me through tough times is: "grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time;" 26. When someone is diagnosed I’d like to tell them: you can ask me anything as there are very often issues and symptoms never mentioned in literature or by doctors (about 5+a year ask about leg pain, or mention it not thinking it is connected to endo.) 27. Something that has surprised me about living with an illness is: its made me more creative. 28. The nicest thing someone did for me when I wasn’t feeling well was: Hold me. 29. I’m involved with Invisible Illness Week because: it will only stay invisible if no one tries. 30. The fact that you read this list makes me feel: warm


  1. Thank you for sharing! My doctor thinks I have IC... I have all the symptoms of it however my urologist thinks nothing is wrong with me.

  2. Nicole, to be fair enough the urologist told me he couldn't diagnose IC since he saw nothing forsure, but couldn't rule it out as i had every symptom. when i spoke to another doctor who i am close with for other conditions and vented the urologist gave me no solutions basically other than "sucks to be you" kinda thing. so he then informed me about how much BS it often takes to get an IC diagnosed fully, so lets not worry about that and try treating the symptoms with something he had just heard of in some medical journal. few days later i was trying vaginal Valium suppositories and shopping online for a gift for that doctor who i was vowing to my mom i loved. they dont always work but its alt better then nothing, and still much better then the meds the urologist was willing to give me that smelt like toxic floor cleaner, and when i rethought over our convo treated none of the issues, nor the cause of them and was a low dose anti-depressant... one that's made me loony in the past. so as i said not 100% diagnosed, but had a semi solution for over a year now. (do you have facebook or msn?) i want to go over some other handy treatments i know you should be able to get your hands on. but since not ready to make an informative post about each and why they work rather tell you one on one for now. let me know. my email/facebook email is sorry, since i am on night shift to tired to spellcheck.