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I have interstitial cystitis. It is a chronic pain condition that makes it hard for me to walk. No one knows what causes it, and it is incurable. For me, it is like one guy who also has it said-like living behind a glass wall, watching life go by but unable to participate. In pain all the time. It at times causes me to feel like some crazy person that needs to be coddled. I feel like I don't exist anymore, and I am someone to come home to visit (or not) while the real interests are elsewhere. Like those I love have to be nice to me because I have gone crazy and they can't cause me any more stress. I try to remember things that have shaped my identity to keep some semblance of self. Like, I remember going on long drives to visit my Grandma and Grandpa who had an arbor in front of their house, with mint growing on either side that smelled so wonderful. I remember their grandfather's clock that had a bird that chirped when it hit the hour. I remember that mean rooster , with the chickens, that would chase us when we came too close. I remember my sisters, and cousins riding bikes up and down their lane. I remember Sunday School, and cutting out pictures of Jesus and pasting them with glue that you put on with a plastic thing on the glue's lid. I remember later taking Elmer's glue and putting it on my palm of my hand, letting it dry and pulling it off-and it looked like skin. I remember a rubik's cube I got at a fair. I was really fast at putting it together. I remember going on the Heck Harper show and winning the best smile award, and winning a small loaf of wonder bread, and a candy bar. I remember growing up, riding horses, and climbing hills. I remember my Aunts blowing on my tummy and making funny noises that made me laugh. I remember them puffing out their cheeks and letting me smash them so they made a funny sound. I remember when they would all gather around the piano, and their harmonized singing sounded like Angels must sound. I remember catching grass hoppers, and little green frogs, and salamanders. I remember hearing grass hoppers, on warm summer days, and crickets and frogs at night when it cooled. I remember going roller skating and winning a big hunk bar for being the last one out in a contest. I remember picking and eating black cherries off of that special tree in the corner of the field and on other trees, sweet and sour cherries, and fresh berries from berry bushes. I remember eating apples off of the many different apple trees, some still green, but oh so good. I remember Gram's huge dinners, and Berry cobblers, and chocolate applesauce cake with raisons and white icing on it. I remember the really big trees that had boughs so big that I used to straddle them and ride on them up and down. I remember being sad when they were cut down. I remember the Columbus day storm when some of our best playing trees fell over, and I cried because I was scared. I remember my mom used to play the piano and sing to wake us up, and if we didn't wake up, she would bang on a pan to wake us. I remember I wrote on the back of the piano, and my sister saw me and said she was going to tell, but she didn't tell, but I felt really bad about it. I remember at a school carnival, a boy won a little glass horse with fur attached for me. I remember making forts from bales, and had forts under different trees. I remember winning chewies (like flavored tootsie rolls) in school for winning at being best speller, or other games. I remember going fishing and clamming and smelting with my Grandma and Grandpa and some other adult relatives. I remember watching my Grandma and Grandpa and other relatives cutting open big fish after catching them, and seeing fish eggs come out. I remember going to hunter's safety classes and I was a dead-eye, but Dad wanted me to shoot deer, and I didn't want to. I remember my sister begging to see when a chicken got it's head chopped off, and the body got up and ran around, without the head and my sister and I screamed and cried. I remember miniature horses, and ponies that pulled carts. I remember my mom washing clothes on a washer board, until we got a washing machine and dryer, and one of our kittens got behind the dryer and died. I remember mom helped me name my kitty nutmeg. I knew mom was going to the hospital a lot, and my dad divorced her, and later we were told mom died. I remember not being able to go to the funeral, and being really sad. I remember seeing her grave when Grandma died, and I went to her funeral, and it was a nice place but I felt very disturbed by it. I remember laying on the couch and my Grandpa tickling my feet. I remember playing baseball because Grandpa liked it so much. I remember one of my cousins biting another cousin on the butt when he was a baby. I remember getting the friendliest personality award. I remember playing songs that I liked over and over, even when everyone around me was sick of them. I remember watching bowling leagues when my brother in law and his father were in the league. I remember playing with a large parachute that my brother in law's brother brought. I remember loving to play on monkey bars and jump rope, and swinging, and doing hopscotch. I remember reading Nancy Drew books, and the Hardy Boys, and later, Barbara Cartland books that always had a happy ending. I remember loving to draw and write. I remember being in a play where I was a Skunk, singing "I'm Petunia the skunk, who nobody likes, and nobody wants around, my fur is black with a white stripe down my back, and I live in a hole in the ground. Why oh Why do people run away when all I want to do is be around? Everybody says peeyoo-so what am I to do, but go back to my hole in the ground?"I remember being confused that people were laughing at me while I was singing. Afterward though I found out that was a good thing and I was a "hit". I remember having crushes on boys that afterwards I wondered why I liked them. I remember going swimming, and buying candy for a penny or nickle afterward. I remember that hard pink bazooka gum with the comic in it, and clove gum. I remember the A&W and the Papa, Momma, and Baby burgers, and root beer floats. I remember my great grandmother had a bird, and a mean old lady living next door who would tell us shoo and shake her broom at us if we went too close to her house. My little brother didn't understand and he turned around and was waving at her and saying bye bye when I and my sisters were running away. We had to go back and get him. I remember liking one boy just because he had really neat black hair, and when he cut it, I didn't like him anymore. I remember Leave it to Beaver, and Ozzie and Harriet, Jackie Gleason, Petticoat Junction, Green Acres, I love Lucy, and Raw Hide, and Shanendoah (spelling?), Lassie, and Rin Tin Tin, and the Lone Ranger, and Mr. Ed, and later Chips and Starsky and Hutch, and Charlie's Angels. I remember watching the moon landing in school. I remember when President Kennedy was shot, and Martin Luther King, and Bobby Kennedy. I remember when Marylin Monroe died, and Elvis, and Ricky Nelson. I remember Dad liked songs like The Yellow Rose of Texas and that he was worried about the president being shot, and we watched the funeral on t.v.. I remember getting a red wallet with 5 dollars in it, and someone stole it from me while I was playing on recess. After that I was more careful with not putting money or purses down and leaving them for any length of time. I remember my dad sneaking us candy bars that he had hidden. I remember getting married, and having a painful relationship, and then, divorce. I remember my Grandpa passing away and being unable to eat or sleep or believe it, or listen to that song that was on at the time that was written for someone else who died around the same time. Every breath I take, I remember you. I remember being a single mom who loved her children, and I remember my children telling me they love me and when, as teenagers they told me they hated me, my heart breaking. I remember making pancakes in the mornings with faces like my mother used to. I remember making sure my children had nice holidays, and gifts. I remember on new year's days staying home with my girls, watching the ball drop in time square, and then going outside and listening to all the noise, and banging on pans to make our own noise. I remember the slip-n-slide where the girls and their cousins or friends would run and slide while being sprayed with the hose. I remember picking up lots of apples under our big tree out back. I remember jade plants all over the house. I remember cake decorating for birthdays. I remember only having 2 dollars at the end of some months. I remember re-doing my bathroom and living room wall, and some of the kitchen, and moving heavy furniture up stairs. I remember cold nights where the girls would sleep in my room. I remember I was up watching t.v. and cleaning the house when the news came that Princess Diana had been killed in the accident-I remember knowing that this was big news. I remember that her funeral and the news of her death dwarfed the news of Mother Theresa's death. I remember being able to dance-to Lady in Red, and to Chris Isaac's Wicked Games, and to Unchained melody in the dark just for fun. I remember just being able to dance and loving to dance and exercise. I remember being able to drive to the beach, not being all drugged up on pain killers as I am right now and cannot drive or hardly walk. I remember wanting to find someone to love, who understood me inside, the gentle person I am. I remember loving Jesus, and singing Christian songs with my children. I remember taking them to children's classes and singing silly songs like Ack -gung went the little green frog. I remember Orange Julius or ice cream at the mall. I remember singing and humming and smiling all the time. I remember finding love, romance, and re-marrying. I remember mixed up and hard times with my girls, and am glad that that part is gone, and now that the girls give me hugs and say they love me. I remember working hard, and being appreciated. I remember working hard, and not being appreciated. I remember shopping for clothes for my daughter when she was very pregnant. I remember throwing a shower for my daughter when she was going to have Hailey. I remember who spent the night the 1st night Hailey was born. I remember who gives squishy hugs on faces, and scratchy back hugs.That is still me-I am still here.Because of this disability, I feel as if I am an outsider looking in on my own life. I cannot stand being so disabled. I feel like I am a ghost who left her painful body here, for people to coddle, but not really be close to.I feel I have lost the people that matter to me most, because I feel as if I am just my physical condition-like I no longer am someone to talk over dreams and plans with, but someone who is being coached on what I must do to get better.There is this person inside of me, the real me, that is crying to come back and be heard by true friends-who will never write me off for any reason. Who will understand when I am crying even though I am on anti-depressants. Who will still remember who I am inside, and love me for that person, not for the body that is broken down from stress.Through all this, I have found that David and my family are my blessings, do really care, and do stand by me.TrishWell-after 6 or 7 years of going to the doctors, and neurologists, and being diagnosed with this and that (interstitial cystitis, nocturia, chronic fatigue, barely functioning adrenals, migraines-not to mention having irritable bowel-I actually would get violently ill before I would go, and chronic pain, and weight gain, mercury poisoning, essential tremor, pain during intimacy, possible arthritis in my hips-a bulge in a disk) It took a physical therapist to steer me in the correct direction-to a doctor that within 5 minutes of working on me said I am in a systemic inflammatory condition, and was 99 percent sure I had Lymes disease-and now, I am on a path to the correct treatment, and still trying desperately to stop all the pain I am experiencing which is making it so hard for me to walk, and the treatments are a struggle. I knew there was more going on with my body, that was causing me to lose more and more of who I thought myself to be-in fact, I thought I must be aging and going senile, very young, and after watching myself get worse and worse-I had given up on myself. I no longer believed that I had any hope of getting better-or being out of pain-or being able to discontinue anti-inflammatories and narcotics to control the pain. I had searched for a natural cure to my brain fog, lack of ability to concentrate, or remember, but though some helped, I was getting worse and degenerating, unable to exercise (which I was fanatic about in the past-I had to restrain myself from exercising, because if I tried, I would be in pain from head to toe, and unable to do anything but lay flat, take migraine pills, and anti-inflammatories and keep the room dark). Most doctors, and even one of the neurologists said I was depressed and kept throwing anti-depressants at me, which were causing me more symptoms, and worsening the ones I had. Now, in 3rd stage Lyme disease-it may be permanent neurological damage and arthritis that I will be left with. Treatment is/and is going to be a struggle. My question is why did it take so long for me to get to the source of the problem? Why was it a retired doctor that was the one that had to figure it out? This time I even asked for the anti-depressant because physically, mentally, emotionally, I was at the very end. My job suffered and eventually, I had to request disability. It sounds like, when I read the internet web sites that I am not the only person stuck ending up in 3rd stage before any doctor diagnoses the disease correctly. The worst and wierdest part of this is that the doctor that treated my 'rash from the neck down to my knees that was what he thought an allergic reaction to poison oak' -was the first one to throw the anti-depressants at me. Which caused even worse and more symptoms. He was the one who also watched me going through migraines, and gave me Imetrex (spelling?). One of his collegues put me on morphine to stop the pain I was having-and she acted angry-like I was or had done something wrong when I asked for stronger pain medicine-and made me sign a contract on it-instead of questioning or really digging into my symptoms further, which took me to the emergency room regularly for pain. I would love to hear from anyone else that has been diagnosed with Lyme's disease, and interstitial cystitis, and adrenal malfunction, and chronic pain, and chronic fatigue or pancreatitis, migraines, or irritable bowel, or tremors or parkinson's or lupus or multiple sclerosis, or any of the symptoms I have mentioned. I don't mind if you do not wish to be a friend on my space-in fact, I prefer that you not ask to be added, but please send me messages if you have any info-or personal first hand knowledge about these. Any serious input would be appreciated. It has been the most frustrating journey and frustrating path that I have had to take-because it has lasted so long before anyone came close to diagnosing me correctly. I so much appreciate hearing others who have had similar problems with being diagnosed. According to the support group I have attended on interstitial cystitis, it is a syndrome that often is accompanied by all of the above listed symptoms, excluding tremors (which is a symptom of Lyme disease-also mercury poisoning can have many of these symptoms-as well as parkinsons-usually accompanied by shakiness). Fibromyalgia is commonly found with it also. Thanks for listening, and I look forward to your input.2nd update- I have to correct myself for blaming the doctor who gave me the anti-depressants as being the one who saw the rash-apparently my lack of any short term memory made me mistake an emergency room doctor for the one who gave me the anti-depressants first. Anyway, I am still working on the health problems, and am finding myself looking for more positive thoughts about things in general, especially since it seems I have been in a rapidly manifesting spiritual journey lately. Moldavite anyone?I hope Michael J. Fox does not have the same problem that I did, where his health is deteriorating more instead of improving from the medicine he is taking.