What are some things about you that the IC hasn’t changed? We often times talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn’t taken away?
Below are the answers I’ve received for IC Awareness Month daily topic # 24.
- I am still brutally honest…maybe even more so now. I am sometimes an asshole…I am outspoken and not ashamed of much of anything. My bladder hurts and sex can be tough ..so what? They’re judging? I don’t give a shit. It’s not their problem. It’s mine. I do not embarrass easily…and I still can’t stand those who are ridiculously sensitive about content. For instance.. “Oh no…she said the word vagina…burn her at the stake!!!”Seriously? Bugger off. I have no problem realizing that people who go against me aren’t supposed to be in my life. If they are meant to be there they’d be supportive. Bye bye if you’re not of the latter. I am a perfectionist yet I am terrified at failing so much to the point that sometimes I don’t even try. I am still a singer. I am still a writer. I love hard. I can read anyone by their eyes and what they got goin on behind them. I have saved myself a lot of trouble from that talent. I can read lips…very well. So don’t talk shit about me in the corner. If I have my glasses on and I catch ya…I’m callin your ass out. I will forever stand up for the underdog and I won’t ever judge those based on the things they do unless they knowingly do fucked up things. I relate to people in the hopes that people will attempt to relate to others. I still rarely trust anyone and believe heavily in energy and mind over matter. Yep. I ain’t changed that much at all…
- A positive attitude, my faith, love in my heart and my smile.
- I still have me. I’m still a person. I recently became disabled through Social Security Disability due to my IC and other medical conditions. I’m grateful for it but I miss my career and income. I’m going thru an identity crisis cuz my career defined me. I’m trying to focus on the core of who I am. That hasn’t changed. I’m smart, funny, compassionate, a loving mother and fiance, a fighter of injustice, an animal rights activist… Some days are better than others. I’ve been asked when questioned about my depression “Do you have suicidal thoughts?”. I laugh. Show me a person with debilitating chronic illness and pain that hasn’t thought of giving up and ending the pain. Doesn’t mean I will do it.
- I’m an artist, that hasn’t changed. In some ways it has made me a better artist. I have more time to create and I am more in touch with my feelings. I sew or I am drawing and if I am not really physically creating something then I am sewing or drawing in my mind, know that eventually it is going to be on paper for my next project. And, I am a grandmother of 7 wonderful children, this is my greatest joy in life! My husband is always there loving me and my mother helps me stay sane. She and I sew together every Thursday God willing. IC has stolen many things from me but it can’t take away these very precious parts of me that give me my “living” labels. Not IC labels but who Sherri is, who she was before IC.
- I’m Scots-Irish with the red hair, freckles, temper, impatience, sarcasm, cynicism and sucker punch to match!
Those things will never change. But, there’s another thing I can’t & won’t change either:
I HAVE HOPE.
Do I really BELIEVE my life will ever be healthy or easy? NO. So, I just keep *believing* a reason to *hope* might find me someday…
- I Never let IC take over my body! I am a mother and that will never change! I remain positive, hopeful, caring, compassionate, and loving most days Humor gets me through most situations! I Live life to the fullest and never slow down. On my worst days I push through the pain and my tears are just a release of negative energy. It reminds me of how strong I have become. I will not go down without a fight! Im to stubborn to give up always have been!
- Still feel blessed! I have more issues then just IC so shoot I got this!
- IC has not been able to destroy my faith, or my need to socialize with family and friend. The One that lives in me is greater than IC.
- I still have faith, hope and love.
- My sense of humor. You need one to deal with this disease.
- I do martial arts. There are external and internal martial arts. IC is not taking that away from me. When it hurts too much to train externally, I go back to the internal arts to try to heal myself, or at least practice routines in my mind so that I don’t lose them to my inability to physically repeat them with my body over time. It is a language, simply of movement – use it or lose it. IC isn’t taking it from me. I’ll fight to the death for my kung fu, my qigong and t’ai chi chuan.
It also hasn’t changed how much I love animals. If anything, strengthened it (which I didn’t think was possible! My love for animals has been there forever, run deep, and always trumped humans). They listen. They comfort. They KNOW! They don’t judge or mock. In fact, my dog has become my service companion. He somehow knows before I do when I’m going to have a flare up, and he lets me know. He’s sensitive to those who are very ill. He has even learned (taught himself, somehow) how to use the leash as leverage to help me get around when I can barely walk, and knows where I need to go innately.
- But the thing that IC didn’t change is my fighting spirit. My life has good days and not so good days but I don’t let IC determine what kind of emotional day I’m going to have.
- My smile!
- I’m still a child at heart! I learn to enjoy the moments that I am healthy and show off my inner five year old with the friends are family who are always there for me!
- My Faith in God!
- I am the same person I always was! I an awesome btw. I have IC.. it does not have me! Still living.. laughing.. loving! Just also hurting!.
- It has not changed my faith in God. It is He that gives me the strength to endure the ugliness that comes with IC.
- I think my IC has made my even MORE caring and concerned about others . I have also kept my sense of humor I enjoy making others laugh, it make me feel better too. Hope is alive!
- IC has not changed how hard I laugh at my hilarious husband, how much I love being outdoors, how much I love my wise family, how much I love teaching voice & directing choir, or how much I enjoy a creative project.
- IC has taken a lot away from my intimacy with my husband but there is more to life with your spouse if you truly have a loving one. I hope for remission or a cure.
- IC can’t take the love I have for family and friends
- My love for Daphne Rose and her daddy. That I love people despite their large attempts at pissing me off daily lol. And my love for MOVIES!
- My faith in Jesus Christ! The amazing blessing of my wonderful marriage!
- I play soccer, lift weights, and run. I am extremely adventurous. I am getting my Masters Degree in painting because IC can’t stop me from loving to do what I love to do
- Since having IC for over two years now, I still have my faith in God and faith in my marriage and the love me and my husband share. My husband has been wonderful at being committed to taking care of me being supportive and willing to learn as much as he can about my illnesses. He never misses a dr appointment. We fight for each other our marriage our disabilities. Hes been like my advocate. We never give up on anything. I like how someone said I have IC but it doesn’t have me.
Im also still the same loving mom I am to my son and daughter since I had my daughter nine years ago. They keep me young. I just have to be more careful when playing with them and they know to be gentle with me especially when I tell them, mama hurts.
I look at all the positive to help myself cope. Sometimes its overwhelming when I am dealing with all of my physical illnesses and mental illnesses on top of everything. Im still very blessed.
- I still have a great sense of humor and laughter really is good medicine!
- My gift of gab. LOL I still talk all the time. Helps to get the burning and pain off my mind.
- My ambition. I’ll still work to get the education I want, strive to have the career I want, and hopefully someday have a family, ic or no.
- My Art, Writing.
- My faith in the Lord! In fact, it has grown stronger. He works in such mysterious ways and I’m thankful for every bit of grace (including medication, even though they have side effects).
- IC hasn’t changed my ability to see the brighter side of things. I often heard people throughout my life say- just wait until you’ve suffered something really bad and THEN you won’t be so positive anymore. Ive had IC 25 years- I have my ups and downs and have struggled with depression BUT I always still manage to look for the best in a person, the silver lining in any situation and especially because I have with IC, I MUST look ahead with some kind of hope and be really positive! (or I’d be dead:(
- I still look younger than most people my age! even after soo many sleepless nights
- My greatest pleasure comes from spending time with my family. And that’s one thing IC did not take from me. I can still enjoy my loved ones. I still believe in Christ. I still have faith and hope. I have lost some friends along the way, but if they were real friends they would still be around. I lost my marriage, but was blessed with an even greater man. I honestly have to say that I have gained a lot from having IC. I can focus and appreciate WHAT really is important in life. IC has humbled me and has given me a different perspective on life. I have learned that living in luxury is not what makes us. Love, laughter, family to share that love and laughter with is all I have and is all I need!!!
- My love for my family; that’s what made me so determined to keep living and make life changing decision’s…. hence major surgery “Bladder removal” gave me my life back and has allowed me to move forward after so much pain and darkness….
- Faith! I still have faith.
- I have Interstitial Cystitis, but it doesn’t have me! Thankfully, I have always been an overachiever, so most of the time, I still do the things that I did before, although sometimes not at the same level. Being on the diet is tough at times, but it is worth it! I was diagnosed in 2005 and was able to teach until May, 2012 when the stress was setting off my IC and TMJ too much! I am still working with children at church and an Art Class. Retiring has given me time to start my blog Ms. Nancy’s Nook.
- My love of reading has only been enhanced by extra bathroom time!
- My sense of humor. No matter how bad things get, you have to be able to laugh!
- I’ve learned 2 truly embrace each moment of each day that I’m pain free. My son has taught me so much about endurance & God has increased my faith as I cry out 2 Him much more frequently. I have tons of empathy for those who r having a ‘bad’ day. I now go the speed limit – LOL – the days I’m pain free & actually take the time to enjoy the ride w/o stressing about the police.
- I still love my hubby, my pets, my clothes, found out more about myself since getting IC because I think it slowed me down so I could step back and say “Who is this person?”, found out I wasn’t half as stubborn as I could be. The only support I have as far as IC goes is my hubby & my Urologist. Everyone else just rolls their eyes when I say I can’t eat or drink something. I fake a lot of smiles & hold back a lot of tears.
- Definitely encouraging people to get familiar with this disease, and not to judge a book by its cover every. Single person in this entire world is struggling with something and personally that is my biggest problem with this disease. I see here on Facebook happy families going. To Disney world or tropical trips and I say. I was twenty when I got diagnosed and doc thinks i had it way way younger due to my medical records. Why can’t I just be a normal 27 year old planning trips with my girlfriends exploring the world with my daughter then I woke up going in a vehicle is an issue I come home sobbing because I’m in so much pain I never ever respond to invitations I can’t and that’s why so many ppl walked out of my life. It’s all in my head if someone says that one more time I think I may send every single medical record to them which would most likely be four to six boxes worth of medical material and put READ this
- 1. I’m still a people person…can be tough because I spend so much time alone: in bed or in the bathroom…Facebook and email helps with that, for sure. 2. My sense of humor hasn’t changed…I love to laugh and have a good time with my family and friends. When I feel good, I want to be out and about having a good time, enjoying myself. 3. I am still a wife and a mom. This will never change, though the WAY I get to be a wife and mom has changed because of IC. 4. I am still an intellectual, singer, artist…
- IC hasn’t taken my strength away. If anything it has made me stronger.
- I speak my mind, more so now.
- If anythings its made me stronger!
- having IC hasn’t changed my faith or my optimism! I still things in a clear view! I haven’t changed how loving I love to be to others!
- I’m still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don’t know how to be false or silly or bitchy for the sake of it. I don’t beat about the bush and I still can’t stand pretentious people or game players. I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn’t scream from the rooftops or dance in the streets. I’m still a good mum – although restricted physically in some ways, in others the IC has made me even stronger – as I’m more conscious of how lucky I am to be blessed with my two children and how big a job I’m doing on my own and not doing it too shabbily. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured… That much has not changed. The three of us are a tight family – even tighter than a year ago, I would say. I still love cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it’s serious enough to warrant that. www.strugglingtosurvive35.blogspot.com
These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!