Kara
03-04-2003, 09:22 AM
A day in the life of living in Kara Reese’s body. I get up at 6:00am for work. I drag myself out of bed because I was up all night going to the bathroom. I get myself ready, and head out for my hour commute. Every bump I hit on the road is like a punch in the bladder. It feels like there is a fire rolling around and around with no escape. The fire is heavy like a bowling ball that is trying to come out of my urethra. The pressure is unbelievable. It’s hard to get out of the car after all of that. I drag myself into work and pray that today will be the day that will change my life because by some hope of a miracle, maybe this silent destroyer will decide to leave me in peace and drive someone else insane. Not an hour later, what they call “urgency” (I call it PAIN), creeps back between my legs. I think, maybe if I just hold it, it will go away, so I try to hold it a little longer, the phone rings and someone needs my help. Before I know it, I’m running to the bathroom as fast as I can because I am about to throw up. As soon as I go, I get some short lived relief. I go back to my desk to try and get into my work. An hour later the pain approaches again. I repeat this whole cycle throughout the whole day. Sometimes the urgency stays with me the entire day and NOTHING relieves it. I compare this to a splinter that’s stuck in your eye and you can’t remove it. It’s really hard to do anything when I’m in that much pain! I try to get into my work but it’s impossible. When this happens I want to jump off of a cliff! My co-workers are wondering where I am when the phone is ringing and students/employees are lined up at my desk to fill out paper work. I tired to keep this a secret for so long. Eventually they had to know the truth.
On a good day I will have had 12 trips to the bathroom. On a bad day, try over 80! I’ve tried many medications. This is what happened with the following meds: Dicyclomine, Ditropan, Ditropan XL, Detrol, Detrol LA, Pyridium, Pyridium Plus, Levsin, Nortriptyline, and over 62.5mg of Elavil; all caused this rip roaring NIGHTMARE they call “retention” (I call it HELL). It feels like someone has ripped your fingernails off, one by one. It starts out with the urgency. I try to go to the bathroom to relieve it, but……….I CAN’T GO………….I CAN’T GO AND I’M IN PAIN! I’ll sit in the bathroom for 10-20 minutes and try to get something to come out. Even just a little drop might help. I try turning off the light (this is so I can focus), running water in the sink, dribbling warm water down the pubic area, deep breathing, holding my knees up to my head, pushing on the bladder, turning the light back on and then I repeat some of these things. Thank God I have my own bathroom with a door that locks. I go back to my desk and try to work again. I can’t think about anything because the pain gets worse and worse. I try to go every few minutes but nothing will come out. Minute by minute I grow more and more uneasy. I have to tell my supervisor that I have to leave because I can’t go to the bathroom. She looks at me like I’m insane, probably because I do this just about every 2-3 weeks. My co-workers say to me, “well you don’t look sick?” I know I don’t look sick on the outside, but there’s a raging battle going on inside of me! My next stop is either the Emergency Room or my doctor’s office to get catheterized. I’ve tried to do this myself but it hurts too much! My urethra is always raw and sensitive, even to the slightest touch. It feels like I’m shoving a knife up there! I feel more comfortable leaving it to the professionals. The pain is relieved while the catheter is in, although, a few days after the catheter comes out the whole cycle starts over again. I have to call in sick when the retention happens. I try to go back to work to do my job but it’s damn hard when this disease haunts me, constantly.
I try a surgery called the Interstim. I miss 3 weeks of work. It takes 3 months before I notice a difference in my trips to the bathroom. With this device, I can make it for 2 hours at work and 2-6 hours (only if I don’t drink anything) at home, if I’m lucky. The 2-6 happens once in awhile. It’s not consistent. The Interstim does nothing for the retention and nothing for the days I’m in severe pain. I can’t drink anything, even with the Interstim because it means more trips to the bathroom. If I try to drink any amount of fluid in a day, I will be running to the bathroom every 10 minutes, even with the Interstim. I can’t sit, stand, drive or engage in any physical activity for long periods of time because my lower back, bladder, and urethra get so sore.
The pain is still there and I’m still getting up 4-6 times a night. I tried several more medications: Elmiron, Cardura, Prelief, Celebrex, Tagamet, Claritin, Vistaril, Trazodone, Xanax, Imiprimine, Nortriptyline, Ibuprofen, Darvocet, Oxycodone, Hydrocodone, Hydromorphone, Meperidine, Neurontin, Celexa, Effexor, Depakote and Wellbutrin. These all cause horrible side effects such as severe depression, itching, mania, urgency/frequency and or retention. Some days I have urgency, frequency, and retention at the same time (3 of which are THE WORST SIDE EFFECTS)! This leads to SEVERE PAIN! Every time my doctor hands me a new prescription, I get excited and hopeful. Maybe this will be the one. The excitement continues until I take the pill. Only to realize for the 48th time, this medication isn’t the one. My bladder takes the side effects by responding with, urgency, frequency and or retention. Then the disappointment, sadness, frustration, and anger set in, until the next appointment. My life revolves around my doctors.
By the time I get home from work, I am so exhausted and in so much pain, I can barely make it up the stairs to my apartment. After I get home, I eat dinner and go to bed at 6:30-7:00 because I know that I’ll have to get up early, with no sleep, and do this all over again the next day. My husband never sees me because on my days off, all I do is sleep. It’s even hard to sleep because I’m in pain while I’m sleeping. Every night there is at least one dream that consists of throwing up, catheters, and toilets.
My work has suffered enough to cause verbal warnings. I keep trying new medications in hopes that they will make me feel better, so I can make it to work. They all seem to cause horrible side effects, which cause me to miss more work. My job has warned me that if I take any more time off of work, they may have to let me go but then I can’t pay for the medical attention I need in order to get better, in order to work! I wanted to get on my Husbands health insurance and try to work part-time, but this is now, not possible. My husband lost his job due to layoffs 3 months ago, and in order to keep my health insurance, I have to keep working full-time. I’m losing my mind! I’m not sleeping, haven’t eaten a decent meal in weeks. I am losing all hope. My Husband’s job loss has made this whole nightmare even worse! I desperately need time to heal physically and just as important mentally! I can’t handle this anymore! I am losing all hope that there may be a light at the end of this long, long, tunnel.
This disease has been so hard on me. I was planning on continuing my education to get a Masters in Psychology. It has been my dream for many years to become a Junior High/High School Psychologist. I was barely able to finish my last semester. I wouldn’t even think about trying to go back while trying to battle this horrible disease. I can’t imagine missing a class. I was a straight A student, never missed a class in college.
I have no life. My friends don’t understand what is going on and they say that I’m no fun anymore because I can’t go out to drink and dance with them. I miss my social life. I miss dancing. I miss drinking. I miss staying up until 3:00 in the morning on a Saturday. I miss meeting new people. I miss my spontaneity. I won’t go out because I never know what my bladder will decide to do.
Sexual intercourse is out of the question because it’s too painful and I spend the next 2 days on the toilet, trying to relieve the pain it has caused. I have tried creams for it but they don’t work enough for me to want to have sex on a regular basis. I miss having sex. I miss cuddling with my Husband, but cuddling naturally leads to sex, so I don’t cuddle with him anymore. I can’t even kiss him for fear that he might get turned on and I don’t want to disappoint him by turning away from sex. He avoids me and I avoid him. Our talk consists mainly of IC and what we should do about it.
I went to two pain management specialists, one at Marlborough Hospital and one at New England Medical Center. The specialist in Marlborough said there was nothing he could do for me except trying a nerve block. I tried the nerve block but it did nothing for me. The specialist at New England Medical Center said the same thing. He talked about a pain pump. He said that it would not be a good device for me because of the sensitivity I have with narcotics. He talked about a back nerve stimulator. He felt that it wouldn’t help because it was basically the same thing as the Interstim and the wires of each device would tangle and cause more trouble. He suggested another nerve block.
I keep wishing and hoping that together we can find something that will work, some combination, but it’s not happening. I feel like a horrible, nagging patient. I feel like I am a nuisance to the office. No one wants to be “that psycho patient” that keeps calling and calling. I have failed just about every medication and surgery.
I can’t handle this anymore. This is no way to live at 25.
Kara Reese
3 MONTHS LATER
My bladder pain, urgency, frequency, and retention is 100% relieved by having the indwelling Foley Catheter in. For the past 3 months while wearing it, I have been most grateful of having the luxury of no pain, no urgency, no frequency, and no retention. It’s been life changing, not having to run to the bathroom a million times a day, in pain!
For the first time in years I have been able to sleep 8 hours with out moving and without pain! My body feels at peace for once. I’ve been able to drink and eat everything I want to. It’s been a nice rest. Is there something we can do to make it possible for me to feel this way all of the time, not just when the catheter is in? I want to keep it in forever but it’s so limiting and unattractive at 25 years of age.
(THESE ALL CAUSE SEVERE RETENTION=SEVEREPAIN)
Dicyclomine Ditropan Ditropan XL Detrol Detrol LA Pyridium Pyridum Plus Levsin Nortriptyline over 62.5 mg of Elavil
Other Medications tried that had too many side effects or just didn't work: Elmiron, Cysta-Q, L-Arginine, Aloe-Vera, Cardura -racing heart, DMSO, Prelief -urgency and frequency Vioxx Celebrex Tagamet Claritin Vistaril -severe depression Trazodone - severe depression Xanax - severe depression Imipramine - severe urgency and frequency Nortriptyline - retention, depression, anger Ibuprofen- itching and mania Oxycodone- itching and mania Hydrocodone- itching and mania Hydromorphone-itching and mania Meperidine- itching and mania Neurontin urgency and frequency Wellbutrin-panic attacks and agitation, Celexa-myoclonic seizures, Effexor-myoclonic seizures, Depkote-severe heartburn
Procedures done:
Cystoscopies, Biopsies, Hydrodistentions, IVP’s, DMSO, Bladder Scans, X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery, Massage, Acupuncture, Allergy Elimination Treatments and finally a cystectomy June 14th 2002
I WOULD DO I AGAIN IN A HEARTBEAT!!!!! IT HAS CHANGED MY LIFE SO MUCH! I AM 85-90% HUMAN NOW scream scream scream scream
On a good day I will have had 12 trips to the bathroom. On a bad day, try over 80! I’ve tried many medications. This is what happened with the following meds: Dicyclomine, Ditropan, Ditropan XL, Detrol, Detrol LA, Pyridium, Pyridium Plus, Levsin, Nortriptyline, and over 62.5mg of Elavil; all caused this rip roaring NIGHTMARE they call “retention” (I call it HELL). It feels like someone has ripped your fingernails off, one by one. It starts out with the urgency. I try to go to the bathroom to relieve it, but……….I CAN’T GO………….I CAN’T GO AND I’M IN PAIN! I’ll sit in the bathroom for 10-20 minutes and try to get something to come out. Even just a little drop might help. I try turning off the light (this is so I can focus), running water in the sink, dribbling warm water down the pubic area, deep breathing, holding my knees up to my head, pushing on the bladder, turning the light back on and then I repeat some of these things. Thank God I have my own bathroom with a door that locks. I go back to my desk and try to work again. I can’t think about anything because the pain gets worse and worse. I try to go every few minutes but nothing will come out. Minute by minute I grow more and more uneasy. I have to tell my supervisor that I have to leave because I can’t go to the bathroom. She looks at me like I’m insane, probably because I do this just about every 2-3 weeks. My co-workers say to me, “well you don’t look sick?” I know I don’t look sick on the outside, but there’s a raging battle going on inside of me! My next stop is either the Emergency Room or my doctor’s office to get catheterized. I’ve tried to do this myself but it hurts too much! My urethra is always raw and sensitive, even to the slightest touch. It feels like I’m shoving a knife up there! I feel more comfortable leaving it to the professionals. The pain is relieved while the catheter is in, although, a few days after the catheter comes out the whole cycle starts over again. I have to call in sick when the retention happens. I try to go back to work to do my job but it’s damn hard when this disease haunts me, constantly.
I try a surgery called the Interstim. I miss 3 weeks of work. It takes 3 months before I notice a difference in my trips to the bathroom. With this device, I can make it for 2 hours at work and 2-6 hours (only if I don’t drink anything) at home, if I’m lucky. The 2-6 happens once in awhile. It’s not consistent. The Interstim does nothing for the retention and nothing for the days I’m in severe pain. I can’t drink anything, even with the Interstim because it means more trips to the bathroom. If I try to drink any amount of fluid in a day, I will be running to the bathroom every 10 minutes, even with the Interstim. I can’t sit, stand, drive or engage in any physical activity for long periods of time because my lower back, bladder, and urethra get so sore.
The pain is still there and I’m still getting up 4-6 times a night. I tried several more medications: Elmiron, Cardura, Prelief, Celebrex, Tagamet, Claritin, Vistaril, Trazodone, Xanax, Imiprimine, Nortriptyline, Ibuprofen, Darvocet, Oxycodone, Hydrocodone, Hydromorphone, Meperidine, Neurontin, Celexa, Effexor, Depakote and Wellbutrin. These all cause horrible side effects such as severe depression, itching, mania, urgency/frequency and or retention. Some days I have urgency, frequency, and retention at the same time (3 of which are THE WORST SIDE EFFECTS)! This leads to SEVERE PAIN! Every time my doctor hands me a new prescription, I get excited and hopeful. Maybe this will be the one. The excitement continues until I take the pill. Only to realize for the 48th time, this medication isn’t the one. My bladder takes the side effects by responding with, urgency, frequency and or retention. Then the disappointment, sadness, frustration, and anger set in, until the next appointment. My life revolves around my doctors.
By the time I get home from work, I am so exhausted and in so much pain, I can barely make it up the stairs to my apartment. After I get home, I eat dinner and go to bed at 6:30-7:00 because I know that I’ll have to get up early, with no sleep, and do this all over again the next day. My husband never sees me because on my days off, all I do is sleep. It’s even hard to sleep because I’m in pain while I’m sleeping. Every night there is at least one dream that consists of throwing up, catheters, and toilets.
My work has suffered enough to cause verbal warnings. I keep trying new medications in hopes that they will make me feel better, so I can make it to work. They all seem to cause horrible side effects, which cause me to miss more work. My job has warned me that if I take any more time off of work, they may have to let me go but then I can’t pay for the medical attention I need in order to get better, in order to work! I wanted to get on my Husbands health insurance and try to work part-time, but this is now, not possible. My husband lost his job due to layoffs 3 months ago, and in order to keep my health insurance, I have to keep working full-time. I’m losing my mind! I’m not sleeping, haven’t eaten a decent meal in weeks. I am losing all hope. My Husband’s job loss has made this whole nightmare even worse! I desperately need time to heal physically and just as important mentally! I can’t handle this anymore! I am losing all hope that there may be a light at the end of this long, long, tunnel.
This disease has been so hard on me. I was planning on continuing my education to get a Masters in Psychology. It has been my dream for many years to become a Junior High/High School Psychologist. I was barely able to finish my last semester. I wouldn’t even think about trying to go back while trying to battle this horrible disease. I can’t imagine missing a class. I was a straight A student, never missed a class in college.
I have no life. My friends don’t understand what is going on and they say that I’m no fun anymore because I can’t go out to drink and dance with them. I miss my social life. I miss dancing. I miss drinking. I miss staying up until 3:00 in the morning on a Saturday. I miss meeting new people. I miss my spontaneity. I won’t go out because I never know what my bladder will decide to do.
Sexual intercourse is out of the question because it’s too painful and I spend the next 2 days on the toilet, trying to relieve the pain it has caused. I have tried creams for it but they don’t work enough for me to want to have sex on a regular basis. I miss having sex. I miss cuddling with my Husband, but cuddling naturally leads to sex, so I don’t cuddle with him anymore. I can’t even kiss him for fear that he might get turned on and I don’t want to disappoint him by turning away from sex. He avoids me and I avoid him. Our talk consists mainly of IC and what we should do about it.
I went to two pain management specialists, one at Marlborough Hospital and one at New England Medical Center. The specialist in Marlborough said there was nothing he could do for me except trying a nerve block. I tried the nerve block but it did nothing for me. The specialist at New England Medical Center said the same thing. He talked about a pain pump. He said that it would not be a good device for me because of the sensitivity I have with narcotics. He talked about a back nerve stimulator. He felt that it wouldn’t help because it was basically the same thing as the Interstim and the wires of each device would tangle and cause more trouble. He suggested another nerve block.
I keep wishing and hoping that together we can find something that will work, some combination, but it’s not happening. I feel like a horrible, nagging patient. I feel like I am a nuisance to the office. No one wants to be “that psycho patient” that keeps calling and calling. I have failed just about every medication and surgery.
I can’t handle this anymore. This is no way to live at 25.
Kara Reese
3 MONTHS LATER
My bladder pain, urgency, frequency, and retention is 100% relieved by having the indwelling Foley Catheter in. For the past 3 months while wearing it, I have been most grateful of having the luxury of no pain, no urgency, no frequency, and no retention. It’s been life changing, not having to run to the bathroom a million times a day, in pain!
For the first time in years I have been able to sleep 8 hours with out moving and without pain! My body feels at peace for once. I’ve been able to drink and eat everything I want to. It’s been a nice rest. Is there something we can do to make it possible for me to feel this way all of the time, not just when the catheter is in? I want to keep it in forever but it’s so limiting and unattractive at 25 years of age.
(THESE ALL CAUSE SEVERE RETENTION=SEVEREPAIN)
Dicyclomine Ditropan Ditropan XL Detrol Detrol LA Pyridium Pyridum Plus Levsin Nortriptyline over 62.5 mg of Elavil
Other Medications tried that had too many side effects or just didn't work: Elmiron, Cysta-Q, L-Arginine, Aloe-Vera, Cardura -racing heart, DMSO, Prelief -urgency and frequency Vioxx Celebrex Tagamet Claritin Vistaril -severe depression Trazodone - severe depression Xanax - severe depression Imipramine - severe urgency and frequency Nortriptyline - retention, depression, anger Ibuprofen- itching and mania Oxycodone- itching and mania Hydrocodone- itching and mania Hydromorphone-itching and mania Meperidine- itching and mania Neurontin urgency and frequency Wellbutrin-panic attacks and agitation, Celexa-myoclonic seizures, Effexor-myoclonic seizures, Depkote-severe heartburn
Procedures done:
Cystoscopies, Biopsies, Hydrodistentions, IVP’s, DMSO, Bladder Scans, X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery, Massage, Acupuncture, Allergy Elimination Treatments and finally a cystectomy June 14th 2002
I WOULD DO I AGAIN IN A HEARTBEAT!!!!! IT HAS CHANGED MY LIFE SO MUCH! I AM 85-90% HUMAN NOW scream scream scream scream