anned77
11-27-2007, 11:51 PM
:wink:Hello everyone. Although this is my very first post, I feel like I know some of you personally. It was throough this very site, about ten months ago, that i unofficially dxed myself. I kept putting my growing and worsening symptoms into the search engines and it was the ICN, to my horror (thou absolutely no offense suggested) that popped its head up every time. For about 3 months, I went back and forth between my now previous OB, my MD, and even one of the most highly regarded uros in town and never ever mentioned IC because 1. I didn't want to come to terms with it and 2. I did not, after being up for 3 and 4 nights in a row in agony, to be told there wasn't such a thing. Well, finally after a record 5 days and nights of pain so bad, it seemed amazing I was still around, I met my saint of a Psych at her office early one Monday morning beside myself with fear and pain. My Psych, showing compassion far beyond her hippocratic oath, took me herself down the hall to the office of a brand new to town OB/GYN who had just begun practicing with another OB friend of hers' who was currently out of town. The waiting room was full of pregnant ladies with their swollen bellies, waiting to pee in their cup, but this did not stop my Dr., who asked my OB if she counld please, please speak with her for only a moment. She reluctantly agreed and took us back an exam room, where I began to tell her what I had been through the past 4 months, no doubt sounding like an idiot, but with the assurance my psych provided me just by being there(and by telling my OB that I used to only visit her for treatment of my ADD) .
Well, within 5 minutes I heard those both dreaded but welcome words. My
wonderful OB, who I fear we bullied into taking me on as a patient said "If you don't have IC, I'll go back to first year medical school. Now lets work on getting you better." God Bless these women until my dying days. I both understand, and am so grateful that I had such an experience when I know so many of you went through the smoky scorching hot of Hell to get anyone to believe how true, and how life alteringly pure this pain that IC hands to you, often when you least expect it or, even worse, at the worst of times.
My OB, being both the gutsy and spunky lady that sge is, called the uro that had already insisted that I was having a sudden flare up of endometriosis the first time I saw him. He agreed to do a cystoscope, but only in his offiice and without distending me or putting me under. Within about 10 seconds of him inserting the scope into my bladder (:toilet:), he pulled it back out again and said "Yep, you've got it." My husband asked him what it looked like in there and he said "like her bladder wall is covered in chicken pox ulcers". He then told me to have my ob continue my pain tx, handed me a script for a 12 month supply of Elmeron, told me to drink Kool-aid or water, and left.
It was only later that afternoon when I went to tell my OB what he said that I reallized why my pain had come on so suddenly and grown so much. That he could see what he described as chicken pox ulcers with basicly his bare eye, and without distending me, meant I had Hunners ulcers. My OB's partner said she had never had him diagnose one of her patients with IC and they were both so excited that he had admited that I had IC, and that he might begin to consider it a possibility when someone with similar pain came in next time.
So, as I am sure many of you felt, my definitive diagnosis came with mixed feelings- and it certainly didn't eradicate any of the pain. My OB and I basicly talked fairly up front about my pain control, and we agreed that, as long as we could keep it under control with a generous but safe amount of percocet 10s and B&O suppositories (for anyone who hasn't used these, try to get a script-sometimes, if anything is goingto stop the pain and keep me out or the ER, its them. You will have to get them made at a compounding pharmacy, and the can be expensive if they won't file your insurance, but the compounded ones seem to work a lot better than the name brand ones, perhaps because they are fresher**, then I could come to her for my meds. She kept her word, and managed it until it was unmanagable by anything she felt comfortable giving me. Being the wonderful Dr. that she is, she did me one more favor-she called the head doctor at the most respected pain clinic and told him all about my situation and, some one has to be looking out for me, he agreed to forgo the 4-6 weeks wait his other patients generally went through, seeing other Dr.s and attending classes, and see me right away, as soon as she could get in touch with me and I could get in.
I know so many of you havve suffered such humiliation and unnessery pain at some of these clinics, so, needless to say, I was afraid and embarrised to go. I was so afraid that, because it took so much medicine to control my pain on a day to day basis, and sometimes, when things got really rough, even a patient controlled pump of Dilaidid running at 1 mg/hr would not lesson the spasms, there would be no way they would think I was being honest.
I couldn't have been more wrong or more shocked when my pain dr. walked into the room. He gave me a lttle morphine to lessen the pain and told me he knew that my pain must be both unbearable and terrifying, that it was the absoluute worst pain that he treated, worse often than even end stage cancer patients, so bad that when they simulated it in the lab in rats, they just layed down and died. He told me that his staff and himself took mykind of pain very, very seriously, that they concidered it deadly; not because ic actually killed people, but rather because people with ic often took it upon themselves to stop the pain permanently, in the only way they could. From the second he walked in the room, he brought with him the air that my pain and my illness was very personal to him; it seemed to affect him as it was if I was a close relative, and, throughout my treatment, he has never made me feel any other way. He talks to my husband, my mom, in the same mannor, and consoles them for what they have had to watch in me, lets them know that he is sharing in their burden, gives all of us peace to carry with us, to help mend and heal the dark cavernous place that fright and hopelessness
has hollowed out in all of us.
Last month, after watching the whole gammut of pain medicines fail me, after seeing, as he said, that I looked like i was running out of gas, he went ahead and implanted an intrathecal Medtronic pain pump, which delivers minute amounts of medicines to a particular nerve in my back. And, even though I am still healling, even though we are still working to find just the right mix of medicines, though sometimes when I first get up I look like someone walking with only one high heel shoe on, I feel my life, my husband and my children, my peace and my happiness coming home to me. I'm starting to notice things I haven't seen in months, the freckles on my little girl's perfect nose, the lanky beginnings of preteenhood in my ten year old boy, a new cowlick in the hair of my 10 month old baby. I'm starting to try to heal other things my pain harmed as well, relationships and the stable comfort of a house where there might be strife here and there, but love is never questioned,and other people's feelings, in your care for one reason or another, are craddled in hands that are soft, gentle birds nests. I know I have a long way to go; I know I might live forever within the knarled, clawed reaches of IC, but I have hope to take along with me, and that, already, is making all the difference.
I certainly wasn't planning on writing so much- I think its just all the people closest to me are so tired, so repulsed by the IC prison I stayed in almost constantly, the prison I couldn't stop talking about, the prison where didn't see anyone on the outside, only my own reflection in the bars that surrounded me.
I also wanted to tell all the regulars, some of whom I've grown so familiar with, we might be neighbors, what comfort you gave me in the middle of the night, when I hurt so badly, I sometimes had to take a pillow outside, get in the van, and scream and sob until I wore myself out. I also wanted to share my story with who ever might just now be beginning their search their way out of the pain and the uncertainty and, worst of all, the thought that knaws at all of us who are experiencing IC for the first time: what if it never stops? What if it just gets worse and worse ? Don't give up on finding someone empathetic to your situation, that never makes you feel embarrised or ashamed of your pain, who finds someone to alleviate some of it if they do not feel comfortable or qualified. I know how unusual my situation was, how lucky I was to have all these wonderful people all but fall from the sky just when I felt I was at the frayed end of my rope and was about to not care if I let go. The sheer courage some of you have shown in your stories, the years you have held on to that dirty rope, waiting. You are inspirations to anyone who has ever had to battle something huge, alone, with pain like a boulder to care round your neck.
I hope I haven't missteped, writing so much my very first time. The web site is so familiar, just reading it, just seeing 3 other people awake somewhere
at 3am has meant so much to me-thank you so much.
i w
i
0
Well, within 5 minutes I heard those both dreaded but welcome words. My
wonderful OB, who I fear we bullied into taking me on as a patient said "If you don't have IC, I'll go back to first year medical school. Now lets work on getting you better." God Bless these women until my dying days. I both understand, and am so grateful that I had such an experience when I know so many of you went through the smoky scorching hot of Hell to get anyone to believe how true, and how life alteringly pure this pain that IC hands to you, often when you least expect it or, even worse, at the worst of times.
My OB, being both the gutsy and spunky lady that sge is, called the uro that had already insisted that I was having a sudden flare up of endometriosis the first time I saw him. He agreed to do a cystoscope, but only in his offiice and without distending me or putting me under. Within about 10 seconds of him inserting the scope into my bladder (:toilet:), he pulled it back out again and said "Yep, you've got it." My husband asked him what it looked like in there and he said "like her bladder wall is covered in chicken pox ulcers". He then told me to have my ob continue my pain tx, handed me a script for a 12 month supply of Elmeron, told me to drink Kool-aid or water, and left.
It was only later that afternoon when I went to tell my OB what he said that I reallized why my pain had come on so suddenly and grown so much. That he could see what he described as chicken pox ulcers with basicly his bare eye, and without distending me, meant I had Hunners ulcers. My OB's partner said she had never had him diagnose one of her patients with IC and they were both so excited that he had admited that I had IC, and that he might begin to consider it a possibility when someone with similar pain came in next time.
So, as I am sure many of you felt, my definitive diagnosis came with mixed feelings- and it certainly didn't eradicate any of the pain. My OB and I basicly talked fairly up front about my pain control, and we agreed that, as long as we could keep it under control with a generous but safe amount of percocet 10s and B&O suppositories (for anyone who hasn't used these, try to get a script-sometimes, if anything is goingto stop the pain and keep me out or the ER, its them. You will have to get them made at a compounding pharmacy, and the can be expensive if they won't file your insurance, but the compounded ones seem to work a lot better than the name brand ones, perhaps because they are fresher**, then I could come to her for my meds. She kept her word, and managed it until it was unmanagable by anything she felt comfortable giving me. Being the wonderful Dr. that she is, she did me one more favor-she called the head doctor at the most respected pain clinic and told him all about my situation and, some one has to be looking out for me, he agreed to forgo the 4-6 weeks wait his other patients generally went through, seeing other Dr.s and attending classes, and see me right away, as soon as she could get in touch with me and I could get in.
I know so many of you havve suffered such humiliation and unnessery pain at some of these clinics, so, needless to say, I was afraid and embarrised to go. I was so afraid that, because it took so much medicine to control my pain on a day to day basis, and sometimes, when things got really rough, even a patient controlled pump of Dilaidid running at 1 mg/hr would not lesson the spasms, there would be no way they would think I was being honest.
I couldn't have been more wrong or more shocked when my pain dr. walked into the room. He gave me a lttle morphine to lessen the pain and told me he knew that my pain must be both unbearable and terrifying, that it was the absoluute worst pain that he treated, worse often than even end stage cancer patients, so bad that when they simulated it in the lab in rats, they just layed down and died. He told me that his staff and himself took mykind of pain very, very seriously, that they concidered it deadly; not because ic actually killed people, but rather because people with ic often took it upon themselves to stop the pain permanently, in the only way they could. From the second he walked in the room, he brought with him the air that my pain and my illness was very personal to him; it seemed to affect him as it was if I was a close relative, and, throughout my treatment, he has never made me feel any other way. He talks to my husband, my mom, in the same mannor, and consoles them for what they have had to watch in me, lets them know that he is sharing in their burden, gives all of us peace to carry with us, to help mend and heal the dark cavernous place that fright and hopelessness
has hollowed out in all of us.
Last month, after watching the whole gammut of pain medicines fail me, after seeing, as he said, that I looked like i was running out of gas, he went ahead and implanted an intrathecal Medtronic pain pump, which delivers minute amounts of medicines to a particular nerve in my back. And, even though I am still healling, even though we are still working to find just the right mix of medicines, though sometimes when I first get up I look like someone walking with only one high heel shoe on, I feel my life, my husband and my children, my peace and my happiness coming home to me. I'm starting to notice things I haven't seen in months, the freckles on my little girl's perfect nose, the lanky beginnings of preteenhood in my ten year old boy, a new cowlick in the hair of my 10 month old baby. I'm starting to try to heal other things my pain harmed as well, relationships and the stable comfort of a house where there might be strife here and there, but love is never questioned,and other people's feelings, in your care for one reason or another, are craddled in hands that are soft, gentle birds nests. I know I have a long way to go; I know I might live forever within the knarled, clawed reaches of IC, but I have hope to take along with me, and that, already, is making all the difference.
I certainly wasn't planning on writing so much- I think its just all the people closest to me are so tired, so repulsed by the IC prison I stayed in almost constantly, the prison I couldn't stop talking about, the prison where didn't see anyone on the outside, only my own reflection in the bars that surrounded me.
I also wanted to tell all the regulars, some of whom I've grown so familiar with, we might be neighbors, what comfort you gave me in the middle of the night, when I hurt so badly, I sometimes had to take a pillow outside, get in the van, and scream and sob until I wore myself out. I also wanted to share my story with who ever might just now be beginning their search their way out of the pain and the uncertainty and, worst of all, the thought that knaws at all of us who are experiencing IC for the first time: what if it never stops? What if it just gets worse and worse ? Don't give up on finding someone empathetic to your situation, that never makes you feel embarrised or ashamed of your pain, who finds someone to alleviate some of it if they do not feel comfortable or qualified. I know how unusual my situation was, how lucky I was to have all these wonderful people all but fall from the sky just when I felt I was at the frayed end of my rope and was about to not care if I let go. The sheer courage some of you have shown in your stories, the years you have held on to that dirty rope, waiting. You are inspirations to anyone who has ever had to battle something huge, alone, with pain like a boulder to care round your neck.
I hope I haven't missteped, writing so much my very first time. The web site is so familiar, just reading it, just seeing 3 other people awake somewhere
at 3am has meant so much to me-thank you so much.
i w
i
0