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Here is a sample letter
This is a draft of the letter I will be sending to my family.....hope this proves helpful for all of you. Lisa
Dear Friends and Family,
I want to tell you all how much I love you and need your support. I am writing to tell you about an illness I have, one that affects me and those around me. It is called Interstitial Cystitis. It is a debilitating and painful disease of the bladder. There is no known cause and no cure.
This disease affects the lining of the bladder. Through the disease, process the protective lining is broken down, leaving the bladder wall vulnerable to irritation from urine. In many cases, this leads to pinpoint bleeding in the bladder wall when stretched in a procedure called hydro distension. These are call glomerations. In some rare cases, people develop ulcers in their bladder wall; these are called Hunner's Ulcers.
The normal symptoms for a person with IC are frequency (as many as 50-70 times a day) and urgency of urination and pain. A person may feel as if they have a UTI, but their tests will come back clear of infection. The feeling, for many suffers, of needing to use the bathroom never really goes away. When pain is present it can be severe, some studies have equivocated the pain of IC with the pain of bladder cancer. This disease can severely affect quality of life.
This disease is diagnosed through a process of elimination, and through a cystoscopy under anthisehia, with a hydro distension, usually a biopsy is also involved. This is done in a same day surgery process, with either general or spinal anthesia. Diagnosis is only a first step in a long process.
Treatments of IC are few, there is a drug called Elmiron that works for about 33% of the people that take it. Bladder installations are the treatment mainstay, with drugs like DMSO and heparin being the ones most often instilled. Other drugs such as trycillic anti depressants and some anti histamines can give some relief. In other cases, drugs for over active bladder might help. There is no one treatment that works in everyone. There is no one drug that works for an individual person. Usually a combination of treatments and drugs need to be tried to get relief for the patient.
This disease does limit what I can do, and in ways that most people would not think of. I cannot drive long distances without some discomfort, usually only with great discomfort. I cannot shop at stores that do not offer public restrooms, because I may not be able to wait to find a bathroom. Pain may leave me homebound unable to fully participate in life, hold down a job, or do many of the things I used to enjoy before I got this disease.
When I leave a room to go to the bathroom, please do not assume that I am trying to avoid a conversation with you, it has nothing to do with you, it has to do with my bladder. Please do not assume that I am rude when I leave a public gathering at an inopportune time, my disease is the problem. If I cancel plans with you, it is because I am not up to it, not because I do not want to see you. Please do not be offended if I refuse a dish that you have made me, I am on a restricted diet to prevent a worsening of my symptoms. Please do not assume that because I look fine, that I am feeling fine. I may not have had much sleep, as I have been getting up frequently during the night to use the bathroom, I may also be in pain and unable to function as I would like. Do not assume that I can work with this disease. Many employers are not willing to make the accommodations my condition requires, and I may not be healthy enough to go to a job on a daily basis. If I am able to work, this does not mean that I am better, just that I am healthy enough for now to hold down a job.
There is nothing that I can do to make this disease go away, all I can do is learn to live with it. Having you on my side and understanding of my disease would be of great comfort to me.
If you would like any more information about IC, it symptoms, and treatments I have websites that you can go to. I am also willing to get you whatever information you may need.
Thank you
Dear Friends and Family,
I want to tell you all how much I love you and need your support. I am writing to tell you about an illness I have, one that affects me and those around me. It is called Interstitial Cystitis. It is a debilitating and painful disease of the bladder. There is no known cause and no cure.
This disease affects the lining of the bladder. Through the disease, process the protective lining is broken down, leaving the bladder wall vulnerable to irritation from urine. In many cases, this leads to pinpoint bleeding in the bladder wall when stretched in a procedure called hydro distension. These are call glomerations. In some rare cases, people develop ulcers in their bladder wall; these are called Hunner's Ulcers.
The normal symptoms for a person with IC are frequency (as many as 50-70 times a day) and urgency of urination and pain. A person may feel as if they have a UTI, but their tests will come back clear of infection. The feeling, for many suffers, of needing to use the bathroom never really goes away. When pain is present it can be severe, some studies have equivocated the pain of IC with the pain of bladder cancer. This disease can severely affect quality of life.
This disease is diagnosed through a process of elimination, and through a cystoscopy under anthisehia, with a hydro distension, usually a biopsy is also involved. This is done in a same day surgery process, with either general or spinal anthesia. Diagnosis is only a first step in a long process.
Treatments of IC are few, there is a drug called Elmiron that works for about 33% of the people that take it. Bladder installations are the treatment mainstay, with drugs like DMSO and heparin being the ones most often instilled. Other drugs such as trycillic anti depressants and some anti histamines can give some relief. In other cases, drugs for over active bladder might help. There is no one treatment that works in everyone. There is no one drug that works for an individual person. Usually a combination of treatments and drugs need to be tried to get relief for the patient.
This disease does limit what I can do, and in ways that most people would not think of. I cannot drive long distances without some discomfort, usually only with great discomfort. I cannot shop at stores that do not offer public restrooms, because I may not be able to wait to find a bathroom. Pain may leave me homebound unable to fully participate in life, hold down a job, or do many of the things I used to enjoy before I got this disease.
When I leave a room to go to the bathroom, please do not assume that I am trying to avoid a conversation with you, it has nothing to do with you, it has to do with my bladder. Please do not assume that I am rude when I leave a public gathering at an inopportune time, my disease is the problem. If I cancel plans with you, it is because I am not up to it, not because I do not want to see you. Please do not be offended if I refuse a dish that you have made me, I am on a restricted diet to prevent a worsening of my symptoms. Please do not assume that because I look fine, that I am feeling fine. I may not have had much sleep, as I have been getting up frequently during the night to use the bathroom, I may also be in pain and unable to function as I would like. Do not assume that I can work with this disease. Many employers are not willing to make the accommodations my condition requires, and I may not be healthy enough to go to a job on a daily basis. If I am able to work, this does not mean that I am better, just that I am healthy enough for now to hold down a job.
There is nothing that I can do to make this disease go away, all I can do is learn to live with it. Having you on my side and understanding of my disease would be of great comfort to me.
If you would like any more information about IC, it symptoms, and treatments I have websites that you can go to. I am also willing to get you whatever information you may need.
Thank you
We are going to my sister in laws home in Michigan and she has said to me MANY times that you just have to keep going when you are in pain and don't let it bug you. HA! Can you tell she has never had chronic pain? 
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