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For All of those Who have been told to Give Up or Quit

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  • For All of those Who have been told to Give Up or Quit

    Hello,

    I am still trying to formulate all of the good that has happened lately, especially last Thursday. To me, that is going to be considered the day when my life will truly begin.

    I have been going through a very tough time lately. My flares have been out of control. I even had a week where I had to fight for treatment because the pain was so bad. I kept being told 'there is nothing more we can do for you.' Kind of a scary thing to be told at 24. Felt like my life was ending, and I had no choice but to give up. Luckily, doing research has paid off, because I was always one step ahead of the doctor, and mentioned an instill I believed may help. She looked into her IC things and found one, which is mentioned below. Luckily I tried it because it is the first instill that actually gave immediate relief, and I don't need to re-cath! I can just void the solution normally. I found out with my doctor that she is not giving up on me, just reaching the end of her knowledge and what she does in her practice. I am on every kind of medication, so that does not help, and have tried many instillations. I am going to see another doctor for another opinion on what to do if my instill stops working, etc.

    I have been trying to get back into the mode with work, and grad school and doing what I can. I have missed weeks at a time, but I have always felt I had support. I do research, and get paid to go to graduate school, so I am lucky. Well when things had been very rough lately I made sure to message someone on my committee, and he said that he had some ideas. I was told by him and my advisor that we would meet during the week. I was nervous I would be told something terrible, or have a detailed discussion, but it was much better. They have put a pause on my written exams (need to pass 5 in 20 tries), I have passed 4 and have 7 tries. So I will not take the rest of my exams until I am healthy. They had to really pull some strings and go out on a limb to get that to happen. I could not believe it. Another thing, is that they want me to take time off, not work alone (due to medications and being a chemist), and not work more than a few hours a day (if that). Also, they would like me to be stable by August. So they are giving me several months to do what I need to do to make myself healthy. If that means going home for a few weeks, then do it, and that gives me time to work on other things at home also. Also, the director of the chemistry department will be paying my stipend over the summer so I do not have to teach and can just relax, do research (if doing better), and do what I need. They believe in me and know I have done wonderful work before, and would like me to continue it.

    I am not giving up. I know this is what is right, and am not leaving until I have the letters P H D after my name. I could not believe the support I have received. It is truly amazing. They know I will not give up and that I am a hard working and passionate person. Not many people with this disorder get that kind of support, but it is out there.

    Just felt like telling this story. Hopefully I continue feeling better, and it will make me do better in the end.

    Erin
    24 year old Ph.D student in Organic Chemistry

    Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

    My blog (just started):

    http://imaginenoworries.blogspot.com/

    Medications:
    Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
    Cymbalta 60mg
    Gabapentin (Neurontin) (3200mg/day)
    Zyrtec 10mg
    Xanax 0.5mg up to 3 times a day(spasms, anxiety)
    Uribel
    Macrobid 100mg (only on days when doing an instill)
    Albuterol
    Yaz Birth Control (3 months on birth control, then period)
    Pelvic floor therapy
    Valium 5 mg (inserted vaginally)
    MScontin 30 mg (3 times a day)
    Percocet 10/325mg (every 6 hours)
    TENS Therapy, CVS machine, 30 minutes once or twice a day
    Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

    *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

    Instill:

    Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

    Used to do these:

    Solu-Cortef (act-o-vial) 100 mg: 2 mL
    Marcaine (bupivicaine) 0.5 % 25 mL
    20,000 units Heparin
    3 mL sodium bicarbonate

    Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

  • #2
    That is terrific that they are being so supportive and understanding. I am sure that will ease your stress level! I am glad that your instills are helping you as well.

    I wish you continued progress!

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      Thank you. I am still trying to process it all, and it has definitely decreased stress levels. Can't believe it! I hope I get well also, just am so thankful to have such great people in my life.

      Erin
      24 year old Ph.D student in Organic Chemistry

      Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

      My blog (just started):

      http://imaginenoworries.blogspot.com/

      Medications:
      Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
      Cymbalta 60mg
      Gabapentin (Neurontin) (3200mg/day)
      Zyrtec 10mg
      Xanax 0.5mg up to 3 times a day(spasms, anxiety)
      Uribel
      Macrobid 100mg (only on days when doing an instill)
      Albuterol
      Yaz Birth Control (3 months on birth control, then period)
      Pelvic floor therapy
      Valium 5 mg (inserted vaginally)
      MScontin 30 mg (3 times a day)
      Percocet 10/325mg (every 6 hours)
      TENS Therapy, CVS machine, 30 minutes once or twice a day
      Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

      *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

      Instill:

      Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

      Used to do these:

      Solu-Cortef (act-o-vial) 100 mg: 2 mL
      Marcaine (bupivicaine) 0.5 % 25 mL
      20,000 units Heparin
      3 mL sodium bicarbonate

      Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

      Comment


      • #4
        Hi ermkenne,
        I have read your post and thank you for giving the hope to others also.
        Happy to know that you are decreasing your stress level and coming back to life.
        Your post will be of great help for those who are going through the same phase.

        Comment


        • #5
          Herbart,

          Thank you for your response. To me if I can show one person that there are people out there who truly care for you while having this disorder, then all is okay with me. Decreasing my stress level has helped, and made me realize that it is important to think about myself. I have set up an appointment with a pain management doctor, and am getting back into physical therapy. People are more than supportive with all of this.

          Good to know, there are good people out there.

          Erin
          24 year old Ph.D student in Organic Chemistry

          Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

          My blog (just started):

          http://imaginenoworries.blogspot.com/

          Medications:
          Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
          Cymbalta 60mg
          Gabapentin (Neurontin) (3200mg/day)
          Zyrtec 10mg
          Xanax 0.5mg up to 3 times a day(spasms, anxiety)
          Uribel
          Macrobid 100mg (only on days when doing an instill)
          Albuterol
          Yaz Birth Control (3 months on birth control, then period)
          Pelvic floor therapy
          Valium 5 mg (inserted vaginally)
          MScontin 30 mg (3 times a day)
          Percocet 10/325mg (every 6 hours)
          TENS Therapy, CVS machine, 30 minutes once or twice a day
          Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

          *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

          Instill:

          Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

          Used to do these:

          Solu-Cortef (act-o-vial) 100 mg: 2 mL
          Marcaine (bupivicaine) 0.5 % 25 mL
          20,000 units Heparin
          3 mL sodium bicarbonate

          Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

          Comment


          • #6
            glad youre finding relief and continuing to fight this beast. i will not give up either.
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

            Comment


            • #7
              Was in remission; but it all came back

              I went through everything, including the instills that you are using now, nerve blocks, hydro-distention, and my urologist has told me that there is nothing else he can do. He will not even prescribe pain meds. I am in a state of despair so deep that I don't know if I can keep it together much longer.
              I can't stand the thought that it is hopeless. I have a son who is 38 and autistic, who depends on me. How will I care for him? How can it be hopeless?
              How can anyone live without some thought of this abating or to some degree, turn into a situation where I can live and cope?
              I am praying more than I ever have in my life, and I do believe that God answers prayer. The pain is too much sometimes, and there has to be an answer.
              Last edited by severtt; 04-17-2011, 02:22 PM. Reason: mismatched phases

              Comment


              • #8
                So good to read positive stories. It gives me hope that one day I will have a 'normal' life again, free from pain and the stress I have battled with. Thanks for sharing, I will not give up either :-)

                Comment


                • #9
                  Hello all that have replied.

                  I am still going through a battle. This is the very first time in my life I have put myself before work, school, and people. It is the first time I have been able to absorb the situation and work on things inside to learn to accept things. It has not been an easy task. My pain is not completely managed, and I am looking forward to my appointment with a pain management doctor who works with IC patients on May 10th. Hopefully they can find something to get this worked out. Right now I am taking time off of work, and trying to relax. Work on my anxiety, and find ways to turn this into something positive. I still find days where I am crying and upset, but this is going to be a battle (and not an easy one). Hopefully things can get under control. I hope for this daily, and hope for this with anyone and everyone.

                  Thank you for being able to find hope in my story. Hope is what gets me going everyday. We can make it through this, as long as we all have each other.

                  Erin
                  24 year old Ph.D student in Organic Chemistry

                  Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

                  My blog (just started):

                  http://imaginenoworries.blogspot.com/

                  Medications:
                  Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
                  Cymbalta 60mg
                  Gabapentin (Neurontin) (3200mg/day)
                  Zyrtec 10mg
                  Xanax 0.5mg up to 3 times a day(spasms, anxiety)
                  Uribel
                  Macrobid 100mg (only on days when doing an instill)
                  Albuterol
                  Yaz Birth Control (3 months on birth control, then period)
                  Pelvic floor therapy
                  Valium 5 mg (inserted vaginally)
                  MScontin 30 mg (3 times a day)
                  Percocet 10/325mg (every 6 hours)
                  TENS Therapy, CVS machine, 30 minutes once or twice a day
                  Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

                  *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

                  Instill:

                  Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

                  Used to do these:

                  Solu-Cortef (act-o-vial) 100 mg: 2 mL
                  Marcaine (bupivicaine) 0.5 % 25 mL
                  20,000 units Heparin
                  3 mL sodium bicarbonate

                  Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

                  Comment

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