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I wrote this for the "Bladder Blog" I just started, but I thought it would make a good entry here, too. Thanks for reading.
I love how wonderful Facebook makes my life look. And not just mine, my friends too! Most people’s pages seem to depict a “Greatest Hits” collection of their lives. The snapshot of life provided by FB makes it appear a constant parade of vacations, adventures, parties, romance, achievements, weddings, babies, and fulfilling relationships. When I take stock of my own photos and wall postings from this year, I’m happily reminded of many wonderful experiences I’ve had. It’s great that this place exists where we can “share our joys” with each other, as they’d say in church. And for so many difficulties we face in life, focusing on the positive is a good coping strategy. It is also the most societally acceptable one. So in an attempt to avoid being a channel of negativity, I’ve basically stopped using facebook in recent months. I feel like what I would have to say would just look so sombre in comparison, as even the positives in my life now are entirely different than what they used to be.
My reality this year has been a far cry from that of the smiling traveler I see in my photos on FB. It is so hard for me to admit to anyone besides my family that all I’ve been doing for the last eight months is dealing with a disease. The truth is that this year I feel like I’ve disappeared, like the qualities of the person “me” don’t exist anymore and I’ve been swallowed up by someone whose whole existence can be summarized by the sentence, “I have interstitial cystitis.” I am not busy, driven, outgoing, passionate or enthusiastic as I once was. All the goals and dreams I had for my life a year ago have either been extinguished or have simply been pushed to the wayside as the sole goal of my life has become to put my Interstitial Cystitis into remission.
For this reason, it’s been hard for me to contact people, or to respond appropriately to the much-appreciated contact friends have made with me. I don’t know how to explain what is going on even to the people who have asked directly- I don’t want to tell them the truth. I don’t want to be such a downer. It’s not simple, and I don’t know where to begin! I don’t want to subject people to a sad story and I hate being the bearer of bad news, especially self-pitying news. I hate the “outsider” feeling of going through dark times. It’s not my first time in this situation. Every couple of years since age 19 something unthinkable, unnatural has derailed my life for a time. Just like everyone else, I grieve, I heal, I pick up the pieces the best I can, and try to make things “normal” again. But I’m really just so tired of putting my life back together and being someone who is “going through” something, that this time I’ve just really really wanted to wait until I had a happy ending to share. I don’t want to be gloomy, but there is no positive way to describe this disease and its effects. So I’ve just been waiting for a big change so that I can say “I’m doing better!! I HAD this terrible disease, it WAS really bad, but then I tried ----(insert miracle cure) and now I’m BETTER!!” But while I’ve continued to hope, I’ve also completely isolated myself. So here is my attempt to get it out there.
The most difficult questions that keep hounding me are “why did this happen?” and the variation, “why did this happen NOW?” I may never find an answer as to why I had to be so sick during the majority of my “year in Europe.” Unfortunately, as the cause of IC has not been discovered, and I can only speculate. Some experts say it’s an autoimmune disease, others, a defect in the bladder lining. Others suspect it is prolonged neurological dysfunction in the aftermath of injury to the bladder. All I know is that before the diagnosis of IC this year, I had experienced four months of the worst health of my life. I had infection after infection- a UTI in September that cleared up with no problem, a cold that turned into a sinus infection in October, a throat infection in November, and a return of the both the UTI and the throat infection in December. Up until late December, I though it was kind of funny. “haha, can you believe it, I’m sick AGAIN! I must be such a weakling!” I tried to have a sense of humor about it. I also fervently believed I would get better.
Yet for someone who had been on antibiotics once in the previous five years, taking six rounds in four months was absurd. I knew something must be completely out of whack with my body, but all the doctors in Spain would say was “You work with little kids, they’re wiping germs all over you, of course you’re getting sick! Now take some more antibiotics.” I was happy to take them, too, because I just wanted to get better so I could go to work and survive! In January, the bladder pain continued and I began to suspect something more was wrong with me than just typical UTIs. I had ultrasounds and x-rays and bloodwork that showed nothing. The throat infection continued into February as well, and in mid-February, I had a bladder attack that I was sure must have been another UTI but, like prior tests in January, the tests showed up negative. Interstitial Cystitis is characterized as having all the same symptoms of a bladder infection, but no bacteria present upon examination.
The night of the “attack,” February 19th, could easily be one of the worst nights of my life. I was unable to sleep due to the searing, burning pain in my bladder and urethra and constant feeling of having to go. I was using the bathroom every 15-20 minutes. I tried taking the medications I’d been given for pain and for my bladder, but nothing helped me. I spent over 12 hours in the ER that night. First the doctors continued to give me pain meds that did nothing for me. Finally, after checking me into a bed at 3am, they gave me tramadol, a narcotic pain reliever and I felt some relief. Then at 7am, they sent me home with orders to see a urologist and a gynocologist, saying they suspected Interstitial Cystitis. Over the next few weeks, I spent my time either in bed, in the loo, or at different doctors. The diagnosis of IC can only be made after other conditions are ruled out, so I had many different tests done. I actually was hoping they’d find something else wrong with me, something with a straightforward cure, because I had been doing research and knew treating IC was a terrible battle. I began treatment with a drug used to relieve nerve pain that also helped me sleep at night. So far, this drug (amitryptiline) and tramadol are the only two drugs/supplements/treatments that I can say have any affect on me. But I have tried at least a dozen other purported treatments since then, including bladder instillations, natural supplements, pharmaceutical drugs, and acupuncture. I also immediately started a really strict “IC diet” in which I don’t eat anything acidic, spicy, aged, fermented, carbonated, preserved or otherwise deemed to be a bladder irritant. That meant cutting about 80% of the food and drink I was used to eating!
After nearly two months of attempting to “beat the IC” in Spain, I lost my job because I couldn’t work, and with it, my health insurance. I even tried to go back to work in April, but after a week I was so miserable that I had to admit defeat. The part that still breaks my heart is how happy my sweet little 6-year-old students were when I came back. I loved them so much! I feel terrible that after my long absence and subsequent return, I then disappeared again forever. Maybe I should have thrown in the towel and come back to the US in December or January, but I believed so fervently that things would turn around for me and I’d be able to salvage the second half of my “year abroad.” I just thought that if I hung on long enough in Madrid, things would eventually get better. I wanted so desperately to get better and get back to being my true self in Spain, so I could finally take part in all the fun my coworkers and friends were having, and also make the investigations into music and performance opportunities I had been so excited about before leaving the states.
Despite the hardships I endured, I still feel that I was able to have some wonderful experiences in Spain and in Europe and that I was blessed to get to know some truly amazing people. These people made all the difference in the world for me by being my friends and caretakers when I was so disabled. I don't want to think about what would have happened to me if I hadn’t had these people in my life. Maybe they don’t even know how much they meant to me (I probably didn’t do a good job of letting them know!), but whether it was just checking up on me or doing me huge favors when I was unable to take care of myself, these friends kept me afloat. They also helped me keep the hope alive that I’d resolve this mess IN SPAIN and get back to the fun I was having the first two months I arrived. While that wasn’t the case, I still managed to make my last few weeks in Spain really really special by taking some phenomenal trips. It wasn’t easy or comfortable to be traveling with pain, frequency and the side effects from the meds, but it was SOOO worth it! I’m still so grateful to the people I traveled with for graciously accommodating my special needs. I want to say to anyone who suffers from chronic illness/pain, that overwhelming your senses (new sights, smells and sounds) can be effective in reducing symptoms to some extent. It’s been proven but this is my anecdotal evidence!
At some point this spring, I formed a fantasy wherein by simply returning to American soil and resuming my old life, I would magically be returned to my pre- Spain self. I would have great health, no bladder problems, and I could begin singing again. Alas, this was only a fantasy. I have had good days and bad days, but as the summer months roll by, I’ve had to confront the fact that my path to healing is every bit the long-term battle I have read about in my research. I have new doctors here and have tried still more treatments. I am in the middle of some right now and will go for a new kind of “bladder instillation” on Monday at Stanford. Should this not be effective, I have the Big Kahuna of IC bladder procedures scheduled for mid-September (hydro-distention with capsaicin instill). This one requires anesthesia and makes you worse for weeks before making you better, but I have really really really high hopes.
I have to keep trying to get better because the consequences of living with this disease as it is now would be totally unbearable for me. The more severe the IC, the greater the tendency is for people to become completely housebound. Thank God, my case isn’t as severe as many I have heard of. But I do have to make sure there is an easily accessible bathroom every where I go. The prospect of limited bathrooms and long lines makes me apprehensive about most crowd situation likes parks, concerts, and festivals. In theaters of any kind, I absolutely must have an aisle seat or I’m in agony. I’ve been astounded and enraged at the number of shops I used to frequent on errands that do not allow customers access to a bathroom (banks, pharmacies, gas stations.) The stress of a long drive (and frantic driving through unfamiliar neighborhoods searching for a gas station w/bathroom) makes me not want to travel much outside of my hometown. The medications I take at night to keep the pain/frequency down make me feel like I have a hangover every morning, as well as contributing to some pretty awful dry mouth and dehydration. The big repercussion of this for me is the feeling that I am overusing my vocal chords after just a few hours of moderate talking. Driving too late at night is a problem due to the meds. I get nervous about eating out or at people’s houses because of all my dietary restrictions. And frankly, I just don't enjoy being out in the world when I'm in pain and looking for a bathroom all the time.
So that’s been my year with IC.
I love how wonderful Facebook makes my life look. And not just mine, my friends too! Most people’s pages seem to depict a “Greatest Hits” collection of their lives. The snapshot of life provided by FB makes it appear a constant parade of vacations, adventures, parties, romance, achievements, weddings, babies, and fulfilling relationships. When I take stock of my own photos and wall postings from this year, I’m happily reminded of many wonderful experiences I’ve had. It’s great that this place exists where we can “share our joys” with each other, as they’d say in church. And for so many difficulties we face in life, focusing on the positive is a good coping strategy. It is also the most societally acceptable one. So in an attempt to avoid being a channel of negativity, I’ve basically stopped using facebook in recent months. I feel like what I would have to say would just look so sombre in comparison, as even the positives in my life now are entirely different than what they used to be.
My reality this year has been a far cry from that of the smiling traveler I see in my photos on FB. It is so hard for me to admit to anyone besides my family that all I’ve been doing for the last eight months is dealing with a disease. The truth is that this year I feel like I’ve disappeared, like the qualities of the person “me” don’t exist anymore and I’ve been swallowed up by someone whose whole existence can be summarized by the sentence, “I have interstitial cystitis.” I am not busy, driven, outgoing, passionate or enthusiastic as I once was. All the goals and dreams I had for my life a year ago have either been extinguished or have simply been pushed to the wayside as the sole goal of my life has become to put my Interstitial Cystitis into remission.
For this reason, it’s been hard for me to contact people, or to respond appropriately to the much-appreciated contact friends have made with me. I don’t know how to explain what is going on even to the people who have asked directly- I don’t want to tell them the truth. I don’t want to be such a downer. It’s not simple, and I don’t know where to begin! I don’t want to subject people to a sad story and I hate being the bearer of bad news, especially self-pitying news. I hate the “outsider” feeling of going through dark times. It’s not my first time in this situation. Every couple of years since age 19 something unthinkable, unnatural has derailed my life for a time. Just like everyone else, I grieve, I heal, I pick up the pieces the best I can, and try to make things “normal” again. But I’m really just so tired of putting my life back together and being someone who is “going through” something, that this time I’ve just really really wanted to wait until I had a happy ending to share. I don’t want to be gloomy, but there is no positive way to describe this disease and its effects. So I’ve just been waiting for a big change so that I can say “I’m doing better!! I HAD this terrible disease, it WAS really bad, but then I tried ----(insert miracle cure) and now I’m BETTER!!” But while I’ve continued to hope, I’ve also completely isolated myself. So here is my attempt to get it out there.
The most difficult questions that keep hounding me are “why did this happen?” and the variation, “why did this happen NOW?” I may never find an answer as to why I had to be so sick during the majority of my “year in Europe.” Unfortunately, as the cause of IC has not been discovered, and I can only speculate. Some experts say it’s an autoimmune disease, others, a defect in the bladder lining. Others suspect it is prolonged neurological dysfunction in the aftermath of injury to the bladder. All I know is that before the diagnosis of IC this year, I had experienced four months of the worst health of my life. I had infection after infection- a UTI in September that cleared up with no problem, a cold that turned into a sinus infection in October, a throat infection in November, and a return of the both the UTI and the throat infection in December. Up until late December, I though it was kind of funny. “haha, can you believe it, I’m sick AGAIN! I must be such a weakling!” I tried to have a sense of humor about it. I also fervently believed I would get better.
Yet for someone who had been on antibiotics once in the previous five years, taking six rounds in four months was absurd. I knew something must be completely out of whack with my body, but all the doctors in Spain would say was “You work with little kids, they’re wiping germs all over you, of course you’re getting sick! Now take some more antibiotics.” I was happy to take them, too, because I just wanted to get better so I could go to work and survive! In January, the bladder pain continued and I began to suspect something more was wrong with me than just typical UTIs. I had ultrasounds and x-rays and bloodwork that showed nothing. The throat infection continued into February as well, and in mid-February, I had a bladder attack that I was sure must have been another UTI but, like prior tests in January, the tests showed up negative. Interstitial Cystitis is characterized as having all the same symptoms of a bladder infection, but no bacteria present upon examination.
The night of the “attack,” February 19th, could easily be one of the worst nights of my life. I was unable to sleep due to the searing, burning pain in my bladder and urethra and constant feeling of having to go. I was using the bathroom every 15-20 minutes. I tried taking the medications I’d been given for pain and for my bladder, but nothing helped me. I spent over 12 hours in the ER that night. First the doctors continued to give me pain meds that did nothing for me. Finally, after checking me into a bed at 3am, they gave me tramadol, a narcotic pain reliever and I felt some relief. Then at 7am, they sent me home with orders to see a urologist and a gynocologist, saying they suspected Interstitial Cystitis. Over the next few weeks, I spent my time either in bed, in the loo, or at different doctors. The diagnosis of IC can only be made after other conditions are ruled out, so I had many different tests done. I actually was hoping they’d find something else wrong with me, something with a straightforward cure, because I had been doing research and knew treating IC was a terrible battle. I began treatment with a drug used to relieve nerve pain that also helped me sleep at night. So far, this drug (amitryptiline) and tramadol are the only two drugs/supplements/treatments that I can say have any affect on me. But I have tried at least a dozen other purported treatments since then, including bladder instillations, natural supplements, pharmaceutical drugs, and acupuncture. I also immediately started a really strict “IC diet” in which I don’t eat anything acidic, spicy, aged, fermented, carbonated, preserved or otherwise deemed to be a bladder irritant. That meant cutting about 80% of the food and drink I was used to eating!
After nearly two months of attempting to “beat the IC” in Spain, I lost my job because I couldn’t work, and with it, my health insurance. I even tried to go back to work in April, but after a week I was so miserable that I had to admit defeat. The part that still breaks my heart is how happy my sweet little 6-year-old students were when I came back. I loved them so much! I feel terrible that after my long absence and subsequent return, I then disappeared again forever. Maybe I should have thrown in the towel and come back to the US in December or January, but I believed so fervently that things would turn around for me and I’d be able to salvage the second half of my “year abroad.” I just thought that if I hung on long enough in Madrid, things would eventually get better. I wanted so desperately to get better and get back to being my true self in Spain, so I could finally take part in all the fun my coworkers and friends were having, and also make the investigations into music and performance opportunities I had been so excited about before leaving the states.
Despite the hardships I endured, I still feel that I was able to have some wonderful experiences in Spain and in Europe and that I was blessed to get to know some truly amazing people. These people made all the difference in the world for me by being my friends and caretakers when I was so disabled. I don't want to think about what would have happened to me if I hadn’t had these people in my life. Maybe they don’t even know how much they meant to me (I probably didn’t do a good job of letting them know!), but whether it was just checking up on me or doing me huge favors when I was unable to take care of myself, these friends kept me afloat. They also helped me keep the hope alive that I’d resolve this mess IN SPAIN and get back to the fun I was having the first two months I arrived. While that wasn’t the case, I still managed to make my last few weeks in Spain really really special by taking some phenomenal trips. It wasn’t easy or comfortable to be traveling with pain, frequency and the side effects from the meds, but it was SOOO worth it! I’m still so grateful to the people I traveled with for graciously accommodating my special needs. I want to say to anyone who suffers from chronic illness/pain, that overwhelming your senses (new sights, smells and sounds) can be effective in reducing symptoms to some extent. It’s been proven but this is my anecdotal evidence!
At some point this spring, I formed a fantasy wherein by simply returning to American soil and resuming my old life, I would magically be returned to my pre- Spain self. I would have great health, no bladder problems, and I could begin singing again. Alas, this was only a fantasy. I have had good days and bad days, but as the summer months roll by, I’ve had to confront the fact that my path to healing is every bit the long-term battle I have read about in my research. I have new doctors here and have tried still more treatments. I am in the middle of some right now and will go for a new kind of “bladder instillation” on Monday at Stanford. Should this not be effective, I have the Big Kahuna of IC bladder procedures scheduled for mid-September (hydro-distention with capsaicin instill). This one requires anesthesia and makes you worse for weeks before making you better, but I have really really really high hopes.
I have to keep trying to get better because the consequences of living with this disease as it is now would be totally unbearable for me. The more severe the IC, the greater the tendency is for people to become completely housebound. Thank God, my case isn’t as severe as many I have heard of. But I do have to make sure there is an easily accessible bathroom every where I go. The prospect of limited bathrooms and long lines makes me apprehensive about most crowd situation likes parks, concerts, and festivals. In theaters of any kind, I absolutely must have an aisle seat or I’m in agony. I’ve been astounded and enraged at the number of shops I used to frequent on errands that do not allow customers access to a bathroom (banks, pharmacies, gas stations.) The stress of a long drive (and frantic driving through unfamiliar neighborhoods searching for a gas station w/bathroom) makes me not want to travel much outside of my hometown. The medications I take at night to keep the pain/frequency down make me feel like I have a hangover every morning, as well as contributing to some pretty awful dry mouth and dehydration. The big repercussion of this for me is the feeling that I am overusing my vocal chords after just a few hours of moderate talking. Driving too late at night is a problem due to the meds. I get nervous about eating out or at people’s houses because of all my dietary restrictions. And frankly, I just don't enjoy being out in the world when I'm in pain and looking for a bathroom all the time.
So that’s been my year with IC.
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