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Post by Karen on Sept 17, 2010 20:44:25 GMT -5
Thanks to Amber for her suggestion! I figured I'd start this under the emotional thread as perhaps this will be a good release for some of us, a good place to reflect. Here's how this works. Copy these questions and paste them into a new post with your answers! (Taken from: www.anewkindofnormal.com/2010/08/30-things-about-my-invisible-illness-you-may-not-know/)1. The illness I live with is: 2. I was diagnosed with it in the year: 3. But I had symptoms since: 4. The biggest adjustment I’ve had to make is: 5. Most people assume: 6. The hardest part about mornings are: 7. My favorite medical TV show is: 8. A gadget I couldn’t live without is: 9. The hardest part about nights are: 10. Each day I take __ pills & vitamins. (No comments, please): 11. Regarding alternative treatments I: 12. If I had to choose between an invisible illness or visible I would choose: 13. Regarding working and career: 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. The commercials about my illness: 18. Something I really miss doing since I was diagnosed is: 19. It was really hard to have to give up: 20. A new hobby 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. I’m involved with Invisible Illness Week because: 30. The fact that you read this list makes me feel:
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Post by lizzylou on Sept 18, 2010 8:13:43 GMT -5
Great one Karen! 1. The illness I live with is: My biggest current issues is Ovarian Cysts (bi-monthly) but there are others 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: Worse. My issue pre-surgery was a 6" cyst in my left. After removing my left, I now have constant issues with my right (which I never had prior) 4. The biggest adjustment I’ve had to make is: Learning to live with the pain because there is nothing I can do about it due to hormone problems 5. Most people assume: I'm whining? I'm making it out to be a bigger issue that it is. 6. The hardest part about mornings are: Getting out of bed. Not a morning person. 7. My favorite medical TV show is: I watched every single episode of ER for the ENTIRE series until the very last season which I didn't watch any 8. A gadget I couldn’t live without is: Cell Phone! 9. The hardest part about nights are: Getting my fiance to put out 10. Each day I take __ pills & vitamins. (No comments, please): 0 11. Regarding alternative treatments I: Looked into a bit, but there is SO much information I get really overwhelmed while weeding through it. 12. If I had to choose between an invisible illness or visible I would choose: Visable, then maybe people would see how I feel 13. Regarding working and career: My job is pretty good, and a lot of times, I sit at work in pain, but we figure it out. 14. People would be surprised to know: I backpacked in the rockies for 4 days with 70lbs of gear on my back. 15. The hardest thing to accept about my new reality has been: I'm a sitting duck. I hate not being able to act on anything, but there are literally no choices. 16. Something I never thought I could do with my illness that I did was: N/A 17. The commercials about my illness: N/A 18. Something I really miss doing since I was diagnosed is: I have this before I was diagnosed but I'll use it anyway. Non-Painful Sex! 19. It was really hard to have to give up: My Ovary!! 20. A new hobby I have taken up since my diagnosis is: I'm thinking of taking Karate 21. If I could have one day of feeling normal again I would: No idea but I would do it all day, because I would have the energy. 22. My illness has taught me: That I'm stronger than I thought. I got dealt a crummy hand medically, but I keep on going and dealing. 23. Want to know a secret? One thing people say that gets under my skin is: When I say "if" I have a child everyone tells me"you'll be fine" YOU DON'T KNOW THAT! UGH! Endo is the leading cause of infertility, I'm down and ovary and that one is nothing but trouble! 24. But I love it when people: UNDERSTAND! 25. My favorite motto, scripture, quote that gets me through tough times is: It's cliche but dealing with addict loved ones my while life... "God grant me the serenity to accept the things I cannot change, change the things I can, and the wisdom to know the difference" 26. When someone is diagnosed I’d like to tell them: Not to sound mean but "at least you have a diagnosis", which seems to be a major battle, and once you know what it is, you can figure out how to cope. 27. Something that has surprised me about living with an illness is: How much constant pain I can be in 28. The nicest thing someone did for me when I wasn’t feeling well was: My fiance always checks on me to see how I'm doing. He tries to make me laugh when I'm sad or in pain (which doesn't work because laughing hurts more). 29. I’m involved with Invisible Illness Week because: I have no idea what this was! 30. The fact that you read this list makes me feel: Supported
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Post by Karen on Sept 18, 2010 8:34:43 GMT -5
Thank Amber84-it was her idea!
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Post by Karen on Sept 18, 2010 10:08:01 GMT -5
1. The illness I live with is: endo 2. I was diagnosed with it in the year: 2009 (January), though I'm one that has a quasi-diagnosis (surgeon said she saw all the classic markers of endo, but the biopsy she took didn't show it) 3. But I had symptoms since: 2001 4. The biggest adjustment I’ve had to make is: eating! There are a lot of things I avoid now in order to feel better. 5. Most people assume: I'm just pissy on days that I don't feel good, because that's how I look! 6. The hardest part about mornings are: getting up... 7. My favorite medical TV show is: was probably ER, because they told it like it is 8. A gadget I couldn’t live without is: pill box! 9. The hardest part about nights are: being alone 10. Each day I take __ pills & vitamins. (No comments, please): 19 11. Regarding alternative treatments I: wouldn't be able to live without them! 12. If I had to choose between an invisible illness or visible I would choose: Hmm, that's a tough one as I have a hard time admitting I'm sick, so I think I'd prefer the invisible one so I could hide it better? 13. Regarding working and career: I love my industry but not my job, but as of yesterday, that might change for the better soon... 14. People would be surprised to know: that I don't fit into the typical girl stereotype and feel I can do just about anything a man can do! 15. The hardest thing to accept about my new reality has been: that I don't have complete control over it all. 16. Something I never thought I could do with my illness that I did was: get more control over it than I did before - I've been educating myself as much as I possibly can! 17. The commercials about my illness: ha ha, WHAT commercials? No one knows what the hell endo is! 18. Something I really miss doing since I was diagnosed is: going through the day without wondering how tired I'll be tomorrow! 19. It was really hard to have to give up: my life for a while! Life really, really, really sucked when I was at my worst, and it pained me that I lost a good 8 months to a year being in a haze... 20. A new hobby I have taken up since my diagnosis is: meeting women throughout the world that understand what it's like to live with endo! 21. If I could have one day of feeling normal again I would: plan a super fun day of lots of physical activities, including the naughty ones! 22. My illness has taught me: that I'm a hell of a lot stronger than I ever thought I was. 23. Want to know a secret? One thing people say that gets under my skin is: "I'd be great if the old Karen were back" 24. But I love it when people: simply ask me how I'm feeling today. 25. My favorite motto, scripture, quote that gets me through tough times is: You can't control anyone else, but you can control how you react to them. 26. When someone is diagnosed I’d like to tell them: you're not going through it alone. 27. Something that has surprised me about living with an illness is: not many people understand what it's like to have that on your mind all the time! 28. The nicest thing someone did for me when I wasn’t feeling well was: bring me food when I was too crappy to cook! 29. I’m involved with Invisible Illness Week because: I'm not? Unless you count this survey! 30. The fact that you read this list makes me feel: heard.
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Post by omaklackey on Sept 18, 2010 14:15:04 GMT -5
Interesting idea Amber...
1. The illness I live with is: endometriosis 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: menarche 4. The biggest adjustment I’ve had to make is: I am sick, its not in my head, its real, lived to long thinking I was just being a baby or making it up somehow 5. Most people assume: That since I had the hysterectomy the endometriosis is gone and I would be all better now. 6. The hardest part about mornings are: groggy feeling because of sleep issues 7. My favorite medical TV show is: scrubs! (love character Carla, apparently hospitals are really like that, the nurses run the show) 8. A gadget I couldn’t live without is: my laptop!! and my phone!! 9. The hardest part about nights are: the night sweats, hot flashes 10. Each day I take __ pills & vitamins. (No comments, please): some, not to bad. 11. Regarding alternative treatments I: am looking into diet, and PT 12. If I had to choose between an invisible illness or visible I would choose: something people could see 13. Regarding working and career: Endo is getting me to reevaluate and I'm starting to work part time and go to school. 14. People would be surprised to know: I'm a closet shy person... I have a hard time expressing myself and how I feel out loud to live people. 15. The hardest thing to accept about my new reality has been: My husband accepting that I'm not better... 16. Something I never thought I could do with my illness that I did was: Climb Steamboat rock only 8 weeks after my first surgery! 17. The commercials about my illness: there aren't any. 18. Something I really miss doing since I was diagnosed is: 19. It was really hard to have to give up: Pop, I try and drink water instead at restaurants and its hard. 20. A new hobby I have taken up since my diagnosis is: Going to school full time, part time job, and teaching music to a drama class two days a week. 21. If I could have one day of feeling normal again I would: Go for a hike with my family and camp somewhere on a lake. 22. My illness has taught me: sickness reveals the ugly or the good and I didn't like what I saw and I'm working on it. 23. Want to know a secret? One thing people say that gets under my skin is: I say "really" and my hubby says "seriously". bad habit we picked up that we can't break. 24. But I love it when people: come to my house and stay for a really long time just hanging around talking!! 25. My favorite motto, scripture, quote that gets me through tough times is: "If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world." - C.S. Lewis 26. When someone is diagnosed I’d like to tell them: about Endo resolved! I have told so many people to come on board, even when I wasn't on board. I tell everyone to check out the info! LOL 27. Something that has surprised me about living with an illness is: after the initial fuss, no one cares, including family members and we are left dealing with it by ourselves. 28. The nicest thing someone did for me when I wasn’t feeling well was: bring me flowers, a live plant that I enjoyed all summer. 29. I’m involved with Invisible Illness Week because: 30. The fact that you read this list makes me feel: depends on who's reading it.
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Post by JC on Sept 18, 2010 18:37:06 GMT -5
This is cool! 1. The illness I live with is: Endometriosis 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: 2001 4. The biggest adjustment I’ve had to make is: Taking medications 5. Most people assume: that I'm completely fine. 6. The hardest part about mornings are: I have to PEE so badly! 7. My favorite medical TV show is: Mystery Diagnosis 8. A gadget I couldn’t live without is: my cell phone 9. The hardest part about nights are: my husband tosses and turns all night and keeps me awake! GRRR! 10. Each day I take __ pills & vitamins. (No comments, please): it varies, does the ring up the vagina count? 11. Regarding alternative treatments I: have changed my diet and will be getting acupuncture 12. If I had to choose between an invisible illness or visible I would choose: an invisible illness. I don't want an illness to define who I am. 13. Regarding working and career: I will be a doctor some day. 14. People would be surprised to know: that I am Mexican because I don't look it. lol 15. The hardest thing to accept about my new reality has been: Having to take synthetic hormones and deal with the side effects. 16. Something I never thought I could do with my illness that I did was: have pain free sex. 17. The commercials about my illness: don't exist! 18. Something I really miss doing since I was diagnosed is: having an abundance of energy. Now I'm just tired all the time. Maybe I'm just getting old? lol 19. It was really hard to have to give up: I don't give up. 20. A new hobby I have taken up since my diagnosis is: moderating the Endo Board! 21. If I could have one day of feeling normal again I would: I still have normal days. I just keep living one day at a time. 22. My illness has taught me: that I'm not as invincible as I thought I was. (a humbling experience) 23. Want to know a secret? One thing people say that gets under my skin is: any sentence that begins with "Why don't you just...." 24. But I love it when people: smile at me. 25. My favorite motto, scripture, quote that gets me through tough times is: "Dogs are cool. If they can't eat it or f*ck it, they just pee on it." 26. When someone is diagnosed I’d like to tell them: I'm sorry about the diagnosis, but it does feel good to have an answer doesn't it? 27. Something that has surprised me about living with an illness is: how much I can do when I'm pushed. 28. The nicest thing someone did for me when I wasn’t feeling well was: Karen sent me a gift box that was freakin awesome! 29. I’m involved with Invisible Illness Week because: there's an invisible illness week? I guess I'm involved because endo is invisible to other people? lol 30. The fact that you read this list makes me feel: like you care about me.
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Post by lizzylou on Sept 18, 2010 22:26:42 GMT -5
Thank Amber84-it was her idea! [/quote ] I noticed that after I posted! oops!!!
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Post by lizzylou on Sept 19, 2010 12:53:01 GMT -5
omaklackey - #27 - YES!
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Post by sunshine78 on Sept 19, 2010 20:40:17 GMT -5
1. The illness I live with is: Well, the most prominent one is Endo. 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: 1992 4. The biggest adjustment I’ve had to make is: Working through/around pain, and the energy pain sucks from every part of me. 5. Most people assume: that I'm a huge biotch, because I don't walk around grinning like an idiot, all the time... but that's just because I F***CKING FEEL SICK, EVERY SINGLE DAY, because of the pain, the migraines, the acid reflux... 6. The hardest part about mornings are: Getting out of bed, to go work at the company that's done nothing but screw me for 2.5 years. 7. My favorite medical TV show is: Dr. G. 8. A gadget I couldn’t live without is: Laptop, cell phone, MP3 player, they're all tied. 9. The hardest part about nights are: Nothing. I get to return to a quiet (relatively speaking), drama-free environment, where I can run around looking like sh*t, and nobody has a comment about my attitude. 10. Each day I take __ pills & vitamins. (No comments, please): Anywhere from 1 - 12. 11. Regarding alternative treatments I: wish I had time to research them. 12. If I had to choose between an invisible illness or visible I would choose: That's a hard one - people would be more inclined to understand if they could see what was going on, but the pity factor might piss me off. Besides, now the docs take pictures of what's going on in there, so you can toss that up in someone's face if they have something to say about why you feel/look terrible, all the time. 13. Regarding working and career: Right now, I'm stuck in a sh*tty sales position. 14. People would be surprised to know: That I am a lot more positive than I look. If I weren't, I wouldn't be WORKING, and doing my damnedest to live my life, when I'm not completely knocked out by the endo or migraines. 15. The hardest thing to accept about my new reality has been: It's not a new reality, it's just a diagnosed one. 16. Something I never thought I could do with my illness that I did was: Hike for miles and miles and miles, over dangerous terrain, sometimes having to be under the influence of narcotics or barbiturates. Honestly, I don't know how I didn't have to be carried, sometimes (oh, this was for geology, I'd never recreationally almost break my ass, lol). 17. The commercials about my illness: I actually didn't realize that there weren't any, until just now. 18. Something I really miss doing since I was diagnosed is: There isn't anything that I haven't done that I used to since then, that I can think of. 19. It was really hard to have to give up: I have only given up junk food, but that's because it makes me feel terrible... and I really don't miss it, although I have odd cravings, now and then, which I satisfy, if they're really bad. 20. A new hobby I have taken up since my diagnosis is: I haven't taken up a new one, yet. 21. If I could have one day of feeling normal again I would: Schedule a marathon session with my South American, after which, I would go to Six Flags and ride all the rides, and then go bowling, and then go dancing, and then have a big, fat mimosa. Notice, I started with the marathon session, lolol... 22. My illness has taught me: That I have a hell of a lot more strength and patience than people give me credit for. 23. Want to know a secret? One thing people say that gets under my skin is: SMILE!!!!! 24. But I love it when people: Actually understand, or try to. 25. My favorite motto, scripture, quote that gets me through tough times is: My own quote: Karma will keep my hands clean. 26. When someone is diagnosed I’d like to tell them: That not only do they now have a diagnosis, and therefore, have at least a little bit more control, but that there are people who understand exactly what they're going through. 27. Something that has surprised me about living with an illness is: Exactly how pervasive it can be. 28. The nicest thing someone did for me when I wasn’t feeling well was: Anything my mom has ever done for me when I'm feeling terrible... she's just amazing. And my friends, and my fella who call me a few times a day when I'm feeling bad enough to miss work, just to see if I'm still okay. 29. I’m involved with Invisible Illness Week because: I didn't know that there was such a thing, until now... but it makes one think. 30. The fact that you read this list makes me feel: Like I've had a catharsis, of sorts.
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Post by amber84 on Sept 20, 2010 22:15:01 GMT -5
I JUST found this!! Thanks for going through with it Karen! I wasn't even sure if anyone read that post. Love all the answers. It is great to vent with a purpose and get to know you ladies better!! Ok..here I go!! 1. The illness I live with is: Stage 4 Endo and Frozen Pelvis 2. I was diagnosed with it in the year: Lap 2009 gave definite dx but they actually started treating me for it when I was 14 3. But I had symptoms since: age 12 first period (menarche) 4. The biggest adjustment I’ve had to make is: saying "no" 5. Most people assume: BC is the answer to every female problem 6. The hardest part about mornings are: getting food in me so I can take my meds 7. My favorite medical TV show is: toss up...House and ER. I watch them online over and over!! 8. A gadget I couldn’t live without is: only one?? my heating pad 9. The hardest part about nights are: not being able to be intimate with my husband 10. Each day I take __ pills & vitamins. (No comments, please):8-12 11. Regarding alternative treatments I: have tried some and I think it would be great if the medical communities, alternative and traditional could unite, working as a team. I don't foresee this actually happening. 12. If I had to choose between an invisible illness or visible I would choose:visible- i don't want pity. I just get sick of trying to explain myself. 13. Regarding working and career: I am a Sign Language Interpreter and work as an independent contractor predominately for the school system. I love my job but my true passion is the volunteer educational work I do with the Deaf in the community. Unfortunately because of this disease...I can't do much of either. 14. People would be surprised to know: even something as simple as sitting for too long causes me extreme pain 15. The hardest thing to accept about my new reality has been: not being able to have children 16. Something I never thought I could do with my illness that I did was: cope 17. The commercials about my illness: haha that's funny...enduhhh what?? 18. Something I really miss doing since I was diagnosed is: it's been too long to know. i would say being more limited as the disease has worsened...not being able to be there for others at the drop of a hat. 19. It was really hard to have to give up: opportunities to travel and expand in my volunteer work 20. A new hobby I have taken up since my diagnosis is: it's not new but I have a LOT more time to read and I LOVE to read! 21. If I could have one day of feeling normal again I would: have LOTS and LOTS of SEX!!!! it wouldn't hurt and I would like it and I would want more of it!!! (this is something I have never experienced) 22. My illness has taught me: you never know what people are dealing with behind closed doors. 23. Want to know a secret? One thing people say that gets under my skin is: "you never know God's plan" or "you can always adopt" *imaginary smack on the forehead* 24. But I love it when people: hug me and say "i'm sorry" 25. My favorite motto, scripture, quote that gets me through tough times is: "For all things I have the strength by virtue of him who imparts power to me."-Philippians 4:13 26. When someone is diagnosed I’d like to tell them: here is my phone #, email address call me anytime...even at 3am. and here is the website for Endo Resolved! 27. Something that has surprised me about living with an illness is: how much you appreciate the good moments 28. The nicest thing someone did for me when I wasn’t feeling well was: one day when i couldn't even get up to get food so i could take my meds...my best friend came over.fed me, got my meds, cleaned my house from top to bottom and then loaded me up in her van and took me to her house so i wouldn't be alone. 29. I’m involved with Invisible Illness Week because: I have an invisible illness.If we all speak up loud enough...it won't matter that they can't see it. 30. The fact that you read this list makes me feel: understood
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Post by Shannon Elizabeth on Sept 20, 2010 23:59:17 GMT -5
1. The illness I live with is: Endometriosis (to name one) 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: 2004 4. The biggest adjustment I’ve had to make is: Listening to my body. When it says "Enough is enough" so be it. 5. Most people assume: I'm fine because I don't really look sick 6. The hardest part about mornings are: When I HAVE to get up because my body doesn't like to get up until its ready and makes me pay if I don't listen. 7. My favorite medical TV show is: House. Just watched season 7 Ep 1 tonight 8. A gadget I couldn’t live without is: My iPod Touch 9. The hardest part about nights are: When I have to lie awake because I'm in pain. 10. Each day I take __ pills & vitamins. (No comments, please): Depends...I try to get by with as little as possible...but I have taken up to like 20 11. Regarding alternative treatments I: Am totally for them, but for some things they just don't cut it. 12. If I had to choose between an invisible illness or visible I would choose: This is a hard question, but I think visible because then maybe people would get it a little more 13. Regarding working and career: I have a great, supportive group of people to work with...but its so hard to go to work in pain and with no energy all the time 14. People would be surprised to know: I'm not very surprising so IDK an answer to this one... 15. The hardest thing to accept about my new reality has been: What it does to my relationships with people and how straining not being able to convey to them how I really feel is. 16. Something I never thought I could do with my illness that I did was: Travel all the way to Costa Rica by myself for a 6 week trip 17. The commercials about my illness: N/A 18. Something I really miss doing since I was diagnosed is: Being able to look at my belly and not detest what is inside 19. It was really hard to have to give up: SOURDOUGH BREAD! 20. A new hobby I have taken up since my diagnosis is: (this isn't really new, but rekindled) Genealogy 21. If I could have one day of feeling normal again I would: Spend a whole day with my baby Levi because I love him so much but spending just a few hours with him wears me to the ground. 22. My illness has taught me: To be extra understanding of people who say they're in pain. I know what its like to always be in pain and its no fun what so ever. 23. Want to know a secret? One thing people say that gets under my skin is: Sports 24. But I love it when people: Just want to hang out and be low key, because that's all I'm capable of being 25. My favorite motto, scripture, quote that gets me through tough times is: "Love never fails" 26. When someone is diagnosed I’d like to tell them: Just try to do the best you can...take your time...and when you're ready, move forward to the best of your abilities 27. Something that has surprised me about living with an illness is: How little people can know about you. Endo has become such an integral part of my life, but so many people I've known for years seem shocked when they find out I'm always in so much pain. 28. The nicest thing someone did for me when I wasn’t feeling well was: Came and gave me a backrub and just took care of me 29. I’m involved with Invisible Illness Week because: Invisible Illness Week? 30. The fact that you read this list makes me feel: Like I'm not the only one who wants to be understood
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Post by cherry on Oct 1, 2010 7:05:44 GMT -5
1. The illness I live with is: endometriosis, long-term depression 2. I was diagnosed with it in the year: endo 2006, depression just generalised as from the age of 15 3. But I had symptoms since: 2005 endo, depression from mid-teens 4. The biggest adjustment I’ve had to make is: being self-aware and careful of what I do to my body at a relatively young age 5. Most people assume: that I'm exaggerating as they don't know something is wrong until I cry or puke or can't stand 6. The hardest part about mornings are: waking up - I'm not a morning person and have random bouts of chronic fatigue - then thinking about whether I feel well. 7. My favorite medical TV show is: don't really watch em, though Nurse Jackie might count? 8. A gadget I couldn’t live without is: my iPod, music gets me through everything 9. The hardest part about nights are: thinking about the future because endo and depression are not very predictable 10. Each day I take __ pills & vitamins. (No comments, please): I just take the BCP and try to avoid pain meds, I take a fat burner called t5 some days, and 8 vitamin pills: Multibionta a pre/pro-biotic multi-vit, vitamin B active for an energy boost, korean ginseng, folic acid, zinc, vitamin c, starflower oil, cod liver oil with glucosamine 11. Regarding alternative treatments I: would love to try them but the NHS is in dire straits, and so are my personal finances. I do self help and adjust my lifestyle where possible 12. If I had to choose between an invisible illness or visible I would choose: invisible. I am learning to cope and appreciate the strength this learning process has given me, and the last thing I want is pity so the privacy of my issues is of some comfort 13. Regarding working and career: I hope for the best and still expect the worst, as disability laws in this country are improving but it's all unpredictable... I am ambitious though. 14. People would be surprised to know: I cannot lie but I can keep secrets. And some of the things I've been through. Again because I'm so damn cheerful it's best to keep it that way as people judge on appearances doubt my word. 15. The hardest thing to accept about my new reality has been: The idea of being sexually intimate with a man or close to friends. I prefer to cope by myself. To see my sister tear up at the sight of me in pain was one of the worst feelings in the world. 16. Something I never thought I could do with my illness that I did was: Get back to the gym, and at no-ones behest but my own. I am now very active at the gym. 17. The commercials about my illness: We don't see any in the UK, but then I don't watch much TV. They say any publicity is good publicity but I find media reports on endo to be patronising at best, misleading at worst. 18. Something I really miss doing since I was diagnosed is: being oblivious to pain but at the same time I appreciate the insight and empathy I now have/feel 19. It was really hard to have to give up: eating and drinking whatever I wanted 20. A new hobby I have taken up since my diagnosis is: Online friendships, and it's lovely 21. If I could have one day of feeling normal again I would:get up super early and feel fine, have a very active day, go for a night out with friends including a good old drink. Maybe some insane sex positions just for the experience minus the mind-numbing pain. 22. My illness has taught me: that benign illnesses are anything but, and to look at everyone twice with consideration and care. 23. Want to know a secret? One thing people say that gets under my skin is: "Don't you feel better yet?" cos I ask myself the same thing in the same resigned tone... only difference is that I have the right to question myself. 24. But I love it when people: Do sweet things to help me on bad days, without coming out and stating 'it's cos you're unwell/she's unwell' it's like a reassuring wink 25. My favorite motto, scripture, quote that gets me through tough times is: off the top of my flitty brain : Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. ~Emily Kimbrough otherwise I listen to certain songs and keep in mind that someone out there could love me as I am. 26. When someone is diagnosed I’d like to tell them: It's good to talk, and I am here... and you are never alone in this, as isolating as it can feel. 27. Something that has surprised me about living with an illness is: How joyful you feel when you notice an absence of pain or symptoms! 28. The nicest thing someone did for me when I wasn’t feeling well was: Telling me they'd always be there, when all I bitterly wanted at that moment was to face it down alone 29. I’m involved with Invisible Illness Week because: I am a sufferer and I understand as a result that invisible shouldn't mean ignored 30. The fact that you read this list makes me feel: Like I've said too much
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Post by amcladybug on Oct 17, 2010 23:55:25 GMT -5
1. The illness I live with is: Endo 2. I was diagnosed with it in the year: 2008 3. But I had symptoms since: 1999/2000 4. The biggest adjustment I’ve had to make is: Accepting that this is a life sentence. 5. Most people assume: That Endo isn't a serious disease 6. The hardest part about mornings are: Getting all my kids on the bus without forgetting anything. 7. My favorite medical TV show is: The Doctors. 8. A gadget I couldn’t live without is: My heating pad. 9. The hardest part about nights are: Watching the minutes tick by and wishing so much to sleep. 10. Each day I take __ pills & vitamins. (No comments, please): 6-10 11. Regarding alternative treatments I: couldn't cope without changing my diet and meditation. 12. If I had to choose between an invisible illness or visible I would choose: invisible 13. Regarding working and career: I'm an at home mom and I couldn't ask for more. 14. People would be surprised to know: The lack of sleep I function with. 15. The hardest thing to accept about my new reality has been: Missing out on things I really wanted to do, especially when it involves my kids. I push my self too far sometimes trying to be there for everything. 16. Something I never thought I could do with my illness that I did was: Easing my symptoms just by changing my diet. 17. The commercials about my illness: Never seen one. 18. Something I really miss doing since I was diagnosed is: Having amble energy. 19. It was really hard to have to give up: The ability to keep up with my kids without paying for it with pain the next day. 20. A new hobby I have taken up since my diagnosis is: Crafting 21. If I could have one day of feeling normal again I would: I would spend the day playing with the kids. Finish it up with a long special night with my man. 22. My illness has taught me: I can still find beauty in the world despite the monster that is torturing the inside of my body 23. Want to know a secret? One thing people say that gets under my skin is: "Yeah I know what you mean I get real bad periods to" 24. But I love it when people: Take the time to learn about Endo. 25. My favorite motto, scripture, quote that gets me through tough times is: "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow." Scarlett O'Hara 26. When someone is diagnosed I’d like to tell them: You are not alone. There are more of us out here who knows and understands the pain and fear you feel. We are all sending out love and hope to you. When you feel isolated come to me and I will be there. 27. Something that has surprised me about living with an illness is: How uncomfortable people are talking about Endo. 28. The nicest thing someone did for me when I wasn’t feeling well was: My kids make me a bed on the couch they always remember my heating pad. My boyfriend is quick to get a cool washrag or just to hold my hand. 29. I’m involved with Invisible Illness Week because: This is the first time I have heard of it. 30. The fact that you read this list makes me feel: like I finally found people who understand and are open to really listen to my pain and fear without judgment.
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Post by KSA on Oct 18, 2010 0:17:20 GMT -5
1. The illness I live with is: Endometriosis, Suspected Lupus 2. I was diagnosed with it in the year: 2009 3. But I had symptoms since: I was a teen 4. The biggest adjustment I’ve had to make is: Getting rid of a organ 5. Most people assume: She looks ok so she cant be sick 6. The hardest part about mornings are: Trying to find something to cover a pregnant looking belly. 7. My favorite medical TV show is: House 8. A gadget I couldn’t live without is: My laptop for heat and chats on ER and FB 9. The hardest part about nights are: Trying to ignore my pain 10. Each day I take __ pills & vitamins. (No comments, please): 4 11. Regarding alternative treatments I: Changed diet and use breathing techniques to control my pain 12. If I had to choose between an invisible illness or visible I would choose: I do not consider endo invisible 13. Regarding working and career: I work hard and put on a happy face 14. People would be surprised to know: How much pain I am really in 15. The hardest thing to accept about my new reality has been: I can not give my husband a child 16. Something I never thought I could do with my illness that I did was: 17. The commercials about my illness: I have never seen a ad for Lupus or Endo 18. Something I really miss doing since I was diagnosed is: I still do everything I just do it with pain and fatigue 19. It was really hard to have to give up: My uterus but it saved my life. Still not easy tho to have it taken out. 20. A new hobby I have taken up since my diagnosis is: Mod on this board 21. If I could have one day of feeling normal again I would: I have normal days just not as many as woman without this disease 22. My illness has taught me: Everything happens for a reason 23. Want to know a secret? One thing people say that gets under my skin is: "Is that really a disease I thought it was just bad periods" 24. But I love it when people: Listen to me and ask questions about endo 25. My favorite motto, scripture, quote that gets me through tough times is: "She was a girl who knew how to be happy even when she was sad. And that’s important—you know " ~Marilyn Monroe~ 26. When someone is diagnosed I’d like to tell them: Educate yourself and see a few doctors. Take control of the disease do not let it control you. 27. Something that has surprised me about living with an illness is: I can go on. It might not be easy but I can do it. 28. The nicest thing someone did for me when I wasn’t feeling well was: My son gave me a bell to ring so I do not have to get up when I feel bad. LOL it is so cute~ 29. I’m involved with Invisible Illness Week because: This was posted 30. The fact that you read this list makes me feel: I have support on here and am happy to be a part of a group of woman who understand.
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Post by painttheseconds on Oct 18, 2010 0:18:01 GMT -5
1. The illness I live with is: Endometriosis 2. I was diagnosed with it in the year: 2010 3. But I had symptoms since: 2005 4. The biggest adjustment I’ve had to make is:Changing my diet and working a lot less. I'm working part time at my job now. 5. Most people assume: That since I had my surgery and some of my endo removed that I'm fine and everything is great. 6. The hardest part about mornings are: Getting up. I tend to feel really tired these days. 7. My favorite medical TV show is: Grey's Anatomy 8. A gadget I couldn’t live without is: My computer 9. The hardest part about nights are: Thinking to much 10. Each day I take __ pills & vitamins. (No comments, please):7-10 11. Regarding alternative treatments I: go to acupuncture, yoga, and am looking into pelvic physical therapy. 12. If I had to choose between an invisible illness or visible I would choose: invisible 13. Regarding working and career: I hope to have a more fulfilling job when the universe feels I'm ready. 14. People would be surprised to know: that I'm not nearly as strong as I portray myself 15. The hardest thing to accept about my new reality has been: slowing down and putting myself and my health first 16. Something I never thought I could do with my illness that I did was: haven't really done anything out of the ordinary yet 17. The commercials about my illness: don't exist 18. Something I really miss doing since I was diagnosed is: hiking 19. It was really hard to have to give up: the idea that I can't deal with my illness alone 20. A new hobby I have taken up since my diagnosis is: cooking/baking 21. If I could have one day of feeling normal again I would: Go to Estes Park and go hiking, have lunch, eat ice cream, and go mini golfing 22. My illness has taught me: that I'm not invincible. I never thought I would be the person to get an incurable disease. It's been a very humbling experience to say the least. 23. Want to know a secret? One thing people say that gets under my skin is: assume that I'm making up how much pain I'm in on a daily basis and that I use it as an excuse to avoid things in my life. 24. But I love it when people: take the time to ask me questions about endo or ask how I'm feeling. 25. My favorite motto, scripture, quote that gets me through tough times is: Live one day at a time, progress not perfection. 26. When someone is diagnosed I’d like to tell them: That they aren't alone and that there is hope. 27. Something that has surprised me about living with an illness is: I've learned more about myself the past couple of months then I ever thought possible. 28. The nicest thing someone did for me when I wasn’t feeling well was: Before my surgery and I got diagnosed my boyfriend stayed the night with me because I was in so much pain and held me the whole night while I cried. 29. I’m involved with Invisible Illness Week because: never heard of it. 30. The fact that you read this list makes me feel: Understood
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