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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
    God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging......The LORD Almighty is with us the GOD of Jacob is our fortress." Psalm 46:1-3,7

    May God bless our nation

  • #2
    Excellent job! I'm going on a "family reunion" trip with 39 of my in-laws tomorrow. I know that for the whole week they will give me a hard time about turning down food, not being able to go in the pool or go hiking, etc. I may use some of the quotes from your letter as a response. Ironically, the family members who are doctors are the most insensitive. Asking for no pepper or spices on your steak is like asking for a million dollars! "Oh, Jeanne needs her's plain. Oh, I better not forget to make Jeanne's separate..." It gets sooooo old.
    Nice work, Idwall!
    Jeanne

    Comment


    • #3
      ldwall(Lisa) great job on the letter. I will also use parts of it to fend off the lack of understanding from family/friends. Jeanne, why are people so darn rude. Like, we really enjoy eating the steak plain, among all the other dietary restrictions we have. And then to be so rude as to actually make an announcement so everyone else has to know about it too! Urgh...for them to spend even one day in our shoes! Good luck at the family reunion. Hold your head high, they are the ones with the more serious problem---called "jerkitis".

      Comment


      • #4
        Thank you Lisa this is a perfect time to write a good letter like that because it is family reunion time. 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?

        I will use parts of your letter also. I really like it. I hope it will help her understand even a little.
        thanks for taking the time to write it.
        you are great!
        love,
        christina
        Christina

        "Faith precedes the Miracle"

        Comment


        • #5
          Lisa, you have done an excellent job with this letter. I suggest you send copies to your close family members.

          Then as it gets closer to "move home" time, you might follow up with a letter that says something like, "By now you have had time to read my letter about my multiple health problems. I know you want to help me get through this so I thought I'd share with you some things you can do to help."

          Then you can go on to ask that nobody urge you to eat things you know are a problem; don't assume that "just getting out" will make you feel better, etc. and maybe you could include that it would be helpful at times to have someone just take the kids to a movie or on a picnic so you can relax.

          You'll make it.

          Love,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

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