Ive been gathering posts, stories, and journaling for the past 8 months since I was diagnosed. I've been planning on writing a book using real peoples lives with IC and all that goes with it. The title of my book will be
"IC: The Person Behind the 7 Minute Dr. Visit.
More and more people are becoming aware of IC and "some" of it's CRAZY symptoms, but people don't realize the life changes an IC diagnosis hands over to the unprepared and uninformed patient. How we live day to day... The fear of the unknown, treatments that are still in their trial stages... Diet, emotions, 24 hr pain that makes you want to pull your hair out in chunks! Shattered relationships. Unable to make plans because you don't know frominute to minute how you are going to feel... Unable to sit or ride in a car without terrible nerve and urgency pain... Deciding what to wear because everything hurts "down there"...no sleep... Exhaustion... Hearing people say: " oh, cystitis, I get that burning sometimes too..." NO THEY DONT HAVE IC!!!! ... the Many many dr and ER VISITS ... Treated for UTI when there is NO bacteria but your symptoms feel like the WORST UTI you've ever had.... And the bladder instills you learn to give yourself to get even a day of
relief. All the restrctions.... Stay away from stress and So Many trigger foods .... And the urethral, vaginal, rectal, peinial PAIN... sleeping with ice packs between your legs, taking long hot baths or showers. ... Drinking baking soda water several times a day. Giving up all drinks except water (only bottled) and milk. You look great, so people don't see how sick you really are. It's an effort to shop with all the bathroom trips having to leave your shopping cart several times hoping it won't be restocked before you get back to it. Finding the shortest check out line racing to put groceries in your car and racing back into the store for your 6th bathroom break. Sitting for 5 minutes of pain and urgency on every dirty toilet in your town ..consntrating til you finally get that little trickle out, and beating yourself up because that's all you had. Then you stand up and before you dry your raw washed hands off you need to go again but you race to your
car so you can get your groceries home. Your groceries wait in the car because you have to potty first. Working with IC is a whole other story. I teach kindergarten and I give every bit of energy to my teaching day and have nothing left for my family or myself. I don't sit at all too painful in my girly areas, groin, thighs .. I work for the insurance and many of my meds aren't covered and the treatments are expensive as each requires a $35 or more copayment. I do PT 2 times a week taking leave without pay because I've used all my vacation and sick leave because of IC. My out of pocket IC cost monthly is close to $450 . Each day before I get out of bed I wish the day was over. I have a bag full Of meds that I hate taking because I can't drive or function normally and responsibly on them and I fear addiction or that my body will get use to one drug and I will have to keep begging for something stronger and stronger. Fear of the unknown.. once you have an
autoemmune disease you may get another one. In fact you probably will. They can't remove what is causing the pain, it's not a tumor. You won't die from IC but 2/3 of the time you would like life to be over. There is alot of depression. Anxiety. Tears. Feeling ALONE, no one listens. The pain is compared to that of cancer, but not given the same research or respect, many doctors and husbands still think it's in our head. You have no intimacy life and you feel alone ALOT. You NEED HUS BAD but that just reminds you intimacy will hurt.... BAD for several days... And you will need to schedule a hot bath and ice pack time... Whilevyour partner falls blissfully asleep... You cant tell him you hurt... He takes it personally.
you probably haven't "met" anyone who has IC just lots of IC sisters on the Internet/ face book friends. Just faces and words printed on a screen. They know and share your pain. They don't know it, but one or more of them have literally saved your life with a few words or a vitual hug.
Yeah. I see my URO evey couple of months now for that 7-9 minute doctors visit that always starts out with "so have you been feeling better?" and you want to cry, and you can't waste any of your short time with tears but you just don't know what to say, how to explain the pain that has taken over your body. How to say I lost myself and I want me back. Usually medications are changed and you make an appt for another month or two. Then I go to my backseat car bed, put my ice pack between my legs, and my husband begins the hour drive home that actually takes twice that long due to the necessary bathroom stops you've plotted out as you've found the cleanest bathrooms along the route home. There is silence in the car as you toss the new prescriptions on the empty passenger seat next to my husband, where I am suppose to be riding. I pull the blanket up over my head, I don't want drivers passing by seeing me. And I cry as quietly as I can all the way home. My
husband gets tired of hearing me sob like I use to. Now I sob uncontrolably when he can't hear me. He doesn't know how to help me, his life has changed too. And our future together is uncertain. Communication is hard because of the pain. I pray alot on those drives home from dr. Visits talking myself out of jumping out of the car intonthe fast moving cars. I wonder if we are passing other IC sufferers lying in pain under a blanket in the backseat. The silence hurts, because I should have been able to say "I'm getting better!"
I've always been strong and brave. Now I scare myself, I've learned to wear a painted smile and suffer with this invisible disease. Sometimes I just wish i could sleep forever. FOREVER. my home needs me to get better,,, it needs cleaned by a womans hands. It screams out at me as I lay on my pillows trying to get better. I wish it would stop yelling at me. My hubby does so
Much of what I use to do... Laundry, dishes, managing the finances, and working in his own career.
Will i ever get better?
I will get better.
I will.
I need to clean my bathroom right now, but laying here with my heat packs and ice packs and my pain meds takes all the energy I have for right Now. Trying not to move too much so the wires on my TENS pain relief machine don't short out or come loose.
Typing with one finger on my iPhone is my stress reliever as I lay here. I don't use good grammer I just type how I feel and I don't go back and fix my mistakes,,, takes too Much out of me.
I have had to take 3 uncomfortable painful trips to the bathroom and reheat my home made rice heat bags several times just writing this email.
There is so much more... Like not being able to sit at the movies and enjoy a show, or plan on any kind of vacation or family time. Flying in an airplane is too painful. Last time i sat at the exit door near the wimdow. It was just an hour flight but i had so much pain once again i talked to myself and prayed that ibwouldntboprn the door.
I'm hungry but I have no idea what to eat everything either bothers my IC or the IBs that goes hand in hand andakes everything worse. I feel so much less pain whe I just drink water all day... But taking all these pills on an empty stomach makes me sick, and puking pills up so
Much has burned my asophogus. I can't spell and I don't care. I teach schoolnfull time standing up all day because sitting is so painful.. I want to take my feet off and give them a soft cold place to cool down,.... RIGHT NOW they are on fire.
So, yes... There is a person behind the 7 minute doctor visit, just search IC on FaceBook and read the life stories minute br minute. Second by second. Day after day. Week after week. Month after month. Year after year. Fr doctor visit to pharmacy.
I know people suffer with many diseases and have heard that 1 in every 2 of us have a silent illness. I pray we can all be more patient and tollerant if each other. And as you drive along those busy freeways and highways be patient, the driver may be worrying about his sick wife hidden under the blanket in the backseat in tears.
I will write this book someday when I get feeling better, maybe I have given you a perspective you may not have thought of. When I write my book the proceeds will go to find a cure for IC and every URO. and GYNO will be given a free copy to read so they can really understand IC is not just a scientific word for what is happening to the bladder wall.
Thanks for taking time to read this mess of thoughts and words. Yes I am in a flare almost constantly. I hear it takes months to figure this out and sometimes years, and sometimes youll never figure it out. And each IC person is different and yet there are commonalities. I'm going to beat this! I will, along with all my IC. Sisters.
Sent from my iPhone oh yeah!
