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  1. #1
    ICN Member Jinny Jean's Avatar
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    Lightbulb Sending hope and health! :D

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    Good morning !

    I thought I would stop by and let you all know what's going on in my world! I usually never come on the forums anymore, but I still frequently think about everyone. Today I had a little extra time so I thought I would try and provide some insight and encouragement.

    It has been FIVE whole years since I was first struggling with IC. I think the anniversary of the beginning always reminds me I should provide possible strategy and hope...I know that five years ago I needed that the most. I sat on these forums for HOURS a day, cried, peed, and sat in the bottom of the shower wishing for the inflammation to go down. I had high frequency and burning, and I felt like I lived in the bathroom. Sounds familiar? It makes me tear up thinking about it, but the tears that well up now are not just because I remember the pain I experienced, but they are also drops of relief when they come down my cheeks knowing that I made it, I came out the other side, I am OK... and I have come this far. When I have tears now they are generally good tears all the way around. Life has had its ups and downs, absolutely... but on a whole, it is so much better than I could have ever imagined


    So to start off, this is only my story, my opinion and what worked for me.
    Some people may be the same, some may have found a different way and path to healing and to health.. so just remember all of us are different and we all bring a different perspective and path. This just happens to be mine.

    For me, knowledge was always power, and I still beside that notion still. Maybe some of you have looked way back in to all the stories of past struggles to get an idea of what you are dealing with... (I did this daily) you might have even come across a few of my old posts way back when... haha... it does seem to so long ago now that I wrote them.... even then I was searching, researching, and doing more reading then I could stand...(as I am sure we all do in the beginning) to try and understand what they heck was happening to my body. I do have to say that one of the things that propelled me forward was my positivity. Now I completely know it isn't always possible to be positive, but I tend to be one of those silver lining people... always trying to scope out what life is trying to teach me, and what I can learn from the experience. I had days where I was so insanely angry at the world, and days where I knew that no matter what, I was going to find what worked for me... it was a period of grieving, it was a period of dramatic loss, and a period of immense change. For me it was kind of like life was knocking me flat on my back, so I could figure out who I was supposed to be, who I wanted to be...because trust me I had no idea. I was 24... thought I had it all figured out. Pffft. Not a single clue.... hahaha ... Even at my darkest days though, I still forced myself to find the silver lining even if it was almost non- existent.

    Fast forward to now.... I am almost 29 years old!! It is somewhat painful to write that....my gosh I sometimes cannot believe how time goes so quickly now... My birthday is in less than a month, and I have so much to celebrate. I used to be a person who was impatient, a tad selfish and a little na´ve... or maybe a lot na´ve... I have grown so much as a person and as a woman... I wouldn't change a thing. I tend to want to say "except for IC" but you know what, it literally is part of my story. Its part of what has allowed me to change, and to grow for the better.

    I was able to recognize that the reason I had IC in the first place was because I was absolutely terrible to my body. There is a reason we all have IC, and in my opinion it is because our bodies are sick and tired of screaming without us listening... its kind of like, ok well, if your gonna continue, I suppose I will have to scream a tad louder and maybe add this in... that is how I kind of pictured it going... I was clearly slow on the uptake and was ignoring all the signs my body was giving me. Experiencing IC has forced my eyes to open to what I was eating, how I was behaving, who I was associating with, and where I was going in life. It has literally been a complete overhaul of my life the last five years.

    This is what I did:

    Number 1: Figured out who my friends were. This happens pretty damn quick when your sick. It is like natural selection. The ones who are meant to stay, will stay, the ones who aren't, get rid of em. You will thank yourself later. Some of the people in my life dropped like flies, others were at my bedside...this is telling you something.

    Number 2: I stopped eating sugar, gluten, dairy, and focused on eliminating toxins and candida from my body. I did this for 6 months. This was super hard, really exhausting and totally worth it. At that point, I saw a lot of improvement from where I was, but I knew there was more to do, and I wanted to get on with life. I made green smoothies in the morning, for lunch and I ate simple foods at dinner like carrots, rice, quinoa, eggs, chicken. The ingredients in the smoothies varied... and I flared a lot trying to figure out what I could handle. Eventually I settled on a few foods and kind of stuck with them... like glue for a really long time. Some of the foods I put in smoothies were, cooked acorn squash, sweet potatoes (sometimes), blueberries, almond milk, pears, lettuce, cucumber, kale. I also stopped birth control entirely and I will never, ever go back on. Synthetic hormones are not something I was willing to subject my body too. Your body has a system for a reason. I chose to allow mine to completely regulate without the use of a fake substance.

    Number 3: I started Elmiron and reduced the pain medication I was on which was tramadol and super strength ibuprophin. I started Hydroxizine and I started to work more on stress reduction. This is important to note. I have always had a serious problem with anxiety. I used to think that it was a small amount when I was younger... HA. No I have some pretty significant anxiety... which I am happy to report has decreased SO much in the last five years. Check yourself, check your anxiety levels. Only YOU can do this. Involve the help of a counsellor. ( I am actually a child and youth mental health counsellor) I also started YOGA.

    Number 4: I started to add things back in to my diet. ALSO. I was patient with the Elmiron. I understand for a few people, it may not work, but what I strongly suggest is that you find some serious patience and every avenue to allow it to work. I waited 8 months before I saw an improvement, started to add things back in, saw more improvement at a year, and continued on adding things back in to the point at a year and a half- two years I was eating everything in sight. I was stoked, and I was doing really well at this point. NOTE: This was TWO years later, your body needs time to reduce the inflammation. I stopped taking pain meds, and I stopped hydroxyzine as well. This carried on for about 4 years of my 5.

    Number 5: Fast forward five years. I sit here now in my sunny window, drinking my pear, spinach, coconut milk, blueberry smoothie...I have realized that there is MUCH more healing to be done. I have come to the conclusion now that WE DO HEAL. WE DO have the ability to reduce the inflammation in our bodies enough to illicit healing. When people say there is " no cure" I actually physically cringe. I wholeheartedly disagree. I BELIEVE that over time, we really are the cure. The choices that we make, the foods that we ingest the stress levels we harbor... THESE things are what makes our bodies toxic and sick. The longer we wait to overhaul our lives.. the more our bodies deteriorate. The amount of research I have done in the last year on the body- brain- gut connection is quite extensive. I used to believe people when they would say "there is no cure, you will always just have to deal".... welllll not exactly. Is there a magic pill that says " yay your cured here you go!" Nope, sure isn't... there isn't a CURE per say that you can go out to the store and buy, or consume one time to have a super fast healing reaction in a day, week or month. We DO NOT spontaneously heal. We heal over time.

    Now this is where I come in and say I am clearly not a Dr, and this is clearly my own experience and opinion, but I think I speak for a whole lot of people when I say "you need to dig deeper" in to what you are putting in your body. When I first started on this journey I started out by focusing on Candida, and alkalinity and while that helped, it was only part of the picture... The other part of the picture is looking and identifying WHERE YOUR FOOD COMES FROM. Like everyone else I was still eating meat that had antibiotics through it, veggies that were pesticide laden, processed SUGAR and GLUTEN, two of the most inflammatory substances you can put in your body REGARDLESS of overt reaction. I have never had a reaction to gluten, or processed sugar until I stopped consuming it. If I consume it now by accident, I can tell! I have gas out of no where, I feel bloated, I have major headaches, and I generally feel ill. We ADAPT well, all of us...look at us go... and we have for years.... however if you take a moment to look around these days, there is more chronic illness than there EVER has been more autism then there ever has been and more obesity then there ever has been. RED FLAG people! Our bodies are NOT meant to consume garbage food. It is like putting half water/ half gas in to your vehicle's tank and saying well, it should be fine... I like not having to buy a FULL tank of gas, its cheaper for me to mix it with water, it's not SO bad... and I kind of like doing it, so WHY would I change? Will your car start? Probably... will it drive? Probably... but after awhile there will be some pretty clear signs day after day that it ain't gonna cut it. Period. You can either listen to these signs or not.

    I started to realize that I still had so much more to do to actually get my body to a place where it could heal from the inside OUT, which meant targeting the factors that lead to LEAKY GUT. The reasoning behind why we develop autoimmune diseases and inflammatory conditions is because there is something WRONG in our bodies, there is something WRONG with the way we are processing food, digesting food, and fighting infection, and there is something WRONG with our gut bacteria or the "second brain". 70- 80 percent of our immune system is in OUR GUTS. Which means we need to take a huge look at reducing inflammation from the mouth down. Pin prick hole are created in our stomach lining, and our intestines, which allows toxins, antibiotics and food particles to build up in other places in our bodies, places like our joints, (arthritis) our brains (depression, ADHD, Autism, MS) our bowels (IBS and Celiac Disease), our bladders (IC) and other various parts of our bodies, even leading to cancer as well.

    This is something that I WHOLEHEARTEDLY believe to be true, and what I am working on with my own body. I am absolutely not alone... and I think this is only the beginning of a fairly large movement of people embracing this kind of attitude towards living, eating and healing.

    Today I do NOT take pain medication of any kind, unless I have a headache that is unbearable, which is very rare, or I cut my leg off........ I do not take antibiotics unless I am literally and figuratively dying... and I have not since I was first struggling in the very beginning when Dr.s were telling me it was "obviously just a bladder infection". I do not eat gluten, I do not eat processed food of any kind, I do not eat sugar, I do not drink milk. I eat meat that comes from a place I feel comfortable with ( meaning grass fed, happy, antibiotic free cows as much as possible), I drink bone broth, I eat vegetables and fruit that I grow, or that I buy organically. I eat small amounts of cheese and butter, and I buy free range eggs from chickens down the road. I eat kefir (whole milk, organic yogurt). I drink coconut and almond milk, and I eat kimchi daily. I take L glutamine in the morning, which helps to repair the stomach lining. I take salmon oil, L Lysine, Tumeric, Magnesium citrate, Vitamine D, Pearls probiotics, oil of oregano, and a multi vitamin at night. I follow the program created by Dr. Josh Axe and I find him to be very insightful and helpful. I am currently looking in to the supplement "RESTORE" (Dr. Zac Bush) Which helps to heal the junctures in the stomach lining, and helps to prevent toxins from further damaging the stomach lining. I should also add that I only include people in my life that I know are a positive force. I quit my very stressful job last year, and moved on to another that has been an absolute blessing. I work with great people, and my anxiety and stress level is very near non- existent most days. I understand not everyone can afford to find a job that is less stressful.... or at least it would seem like that in the moment when you say " I can't afford to quit my job". My question to you, is can you afford NOT too? I had the same fears about leaving one job for another... but I knew unless I got my stress level in check I was going to be affording MUCH more in the long run physically, mentally, and emotionally. I have a relationship that is stronger than it ever has been, and every day I am so happy that I come home to his face. This was not always the case either, but like I said, pretty much a complete overhaul in life... The more I grew in to the person I wanted to be, the more I found contentment in myself, the more I grew with my relationship. I couldn't ask for a better man, partner and friend. He has been with me since DAY ONE, and although there has been ups and downs, ( clearly IC was a large hurdle), and even a brief separation, I would choose him over and over again, every day, no matter what. The next step in our life will hopefully consist of planning our wedding and having babies!

    Today I feel like a completely different person. A well rounded person, a happy person and a HEALTHY person, something that I didn't feel for YEARS. The changes in my mental state, and my body have been SO great. The only thing I take that is not natural is the Elmiron, which I am slowly cutting out as well. My goal is to get off the medication entirely, not only because it is expensive, but because I truly believe that over time I have allowed my bladder to heal WITH the use of the drug, to a place where I can eliminate it from my life.

    It has taken me this long to find out what works for me, five years is a long time, but in the scheme of things it is very minimal. It is a good lesson for me, and others that there is always more learning to do, there is always something you do not know about your body... about your food, and about the different ways to find happiness, health and nutrition.

    I wish everyone healing and love xo

    Jenn
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  2. #2
    ICN Founder icnmgrjill's Avatar
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    Re: Sending hope and health! :D

    Wow.... what a FANTASTIC, encouraging post. Thank you so much for not only sharing your story and showing patients that there is hope... but your suggestions and strategies are absolutely awesome!!!

    Patients read and take now. She NAILED IT!

    Jill O
    President & Founder
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  3. #3
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    Re: Sending hope and health! :D

    Well done jinnyjean!
    Great post. I'm very happy for you.
    I'm in full agreement and can't stress enough how important tweaking the diet is especially with putting a strong focus on whole unprocessed foods.
    I too quit a very stressful job, took some time off, and during that time went into remission. It was definitely a financial hardship, but like you, I couldn't afford not to! Found a new job, much lower stress, and my remission continues to this day, 7 yrs later.
    Hope you continue to have more and even better days ahead. Thanks for the very inspirational post.
    Last edited by Briza; 04-16-2016 at 04:00 PM.

  4. #4
    ICN Staff ICNDonna's Avatar
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    Re: Sending hope and health! :D

    I was away from my computer to be with my husband for a minor surgery --- when I signed on today, I was delighted to see your post. I recall very well the struggle you had for many months. Reading your story gives hope to those who are having a difficult time.

    Thank you! for taking the time to share your success.


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  5. #5
    ICN Member Pernille's Avatar
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    Re: Sending hope and health! :D

    Thanks so much for your encouraging post! This is what we all need some times, a reminder that we can get better and tackle this disease.
    I have a few questions: what do you think was the major player in your healing process (besides yourself ), the diet, the stress reduction or the elmiron?
    And do you still eat rice or buckwheat? I hate quinoa, think it tastes like soap. I am considering to try a gluten free, sugar free diet. I am not diagnosed with bladder wall damage, my urologist says it's all PFD (though she has a broader understanding of it, not just tense muscles). When I start to talk about the diet, she asks me, why I want to make my life miserable? And in a way life gets more complicated. At social events it's not that easy to find something to eat. I eat only organic veggies, meat etc. and basically already very healthy.
    But I absolutely buy into your stress reduction theory. Stress is my major trigger. I could work with something entirely different. But in my own field at the university the possibilities are very limited (I am in Denmark, we only have five universities and right now they have severe cuttings). So, my task is a to reduce stress in the job I have now.
    Really so good to hear that you are doing fine! Also with your boyfriend!
    Best
    Pernille
    Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
    Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
    Greetings from Denmark!

  6. #6
    ICN Member Jinny Jean's Avatar
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    Re: Sending hope and health! :D

    Hi! I think it was a combination to be honest that helped me. I do think the Elmiron was a huge help, and probably what got me to be symptoms free most days. I don't usually have symptoms unless I am ovulating. Then I have some increased frequency but nothing that is terrible. More annoying than anything. I do eat quinoa, and I like it a lot.

    Stress is major for sure. I think it is my number one trigger. I tend to have anxiety when I don't eat right away when I am hungry too, sometimes that makes my bladder cranky. Generally I do very well

    Jenn


    Quote Originally Posted by Pernille View Post
    Thanks so much for your encouraging post! This is what we all need some times, a reminder that we can get better and tackle this disease.
    I have a few questions: what do you think was the major player in your healing process (besides yourself ), the diet, the stress reduction or the elmiron?
    And do you still eat rice or buckwheat? I hate quinoa, think it tastes like soap. I am considering to try a gluten free, sugar free diet. I am not diagnosed with bladder wall damage, my urologist says it's all PFD (though she has a broader understanding of it, not just tense muscles). When I start to talk about the diet, she asks me, why I want to make my life miserable? And in a way life gets more complicated. At social events it's not that easy to find something to eat. I eat only organic veggies, meat etc. and basically already very healthy.
    But I absolutely buy into your stress reduction theory. Stress is my major trigger. I could work with something entirely different. But in my own field at the university the possibilities are very limited (I am in Denmark, we only have five universities and right now they have severe cuttings). So, my task is a to reduce stress in the job I have now.
    Really so good to hear that you are doing fine! Also with your boyfriend!
    Best
    Pernille
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  7. #7
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    Re: Sending hope and health! :D

    Jenn! I haven't been on this board for months. (I am not having IC symptoms). What an uplifting post! And I believe you are RIGHT ON! Thanks for the encouragement! Kate

  8. #8
    ICN Member Aaarrrggghhh's Avatar
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    Re: Sending hope and health! :D

    Hi jenn
    So happy for you. Can't wait to be where you are. I'm seeing my urologist next week and want to see if she can get elmiron in Australia.
    I remember the beginning with such pain and anger and grief over what my body was doing to me. I had always looked after it (gym junkie , good eater , never drank or smoked) so I never had that lightbulb moment of "treat your body better" because I already was. I wasn't stressed , overworked or tired it just happened. Then the stress started.
    I'm going to hold onto your positivity and try learn from it.
    I hope we all heal soon

  9. #9
    ICN Member Jinny Jean's Avatar
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    Re: Sending hope and health! :D

    So glad I can help and provide insight. I used to sit up at night, all hours of the day and night, and look at the success stories.. they helped me to hold on while I figured everything out. I literally read every one of them.

    This is a hard condition to navigate! I realize now that my IC actually started when I was 20 years old. It was fairly minor, not terribly bothersome... but it was there. I just thought that's how bladders worked. If I sat for too long, I would have burning in my pelvis. After I would pee, it went away, so I just thought well " that's what you get for sitting for too long".. that's just how my bladder was. Fast forward 4 years and after too many rounds of antibiotics a whole whack of STRESS and a terrible diet, that's when it became out of the blue noticeable. It has been quite the journey.

    I knew that as soon as I was well, I was going to make sure to reach out to others.

    Hang in there, it does get better
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  10. #10
    ICN Member Jinny Jean's Avatar
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    Re: Sending hope and health! :D

    Quote Originally Posted by Aaarrrggghhh View Post
    Hi jenn
    So happy for you. Can't wait to be where you are. I'm seeing my urologist next week and want to see if she can get elmiron in Australia.
    I remember the beginning with such pain and anger and grief over what my body was doing to me. I had always looked after it (gym junkie , good eater , never drank or smoked) so I never had that lightbulb moment of "treat your body better" because I already was. I wasn't stressed , overworked or tired it just happened. Then the stress started.
    I'm going to hold onto your positivity and try learn from it.
    I hope we all heal soon


    I have heard that Elmiron is in Australia! So hopefully you can try it

    Good luck!
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  11. #11
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    Re: Sending hope and health! :D

    Wonderfull post Jinny!
    I am totally agree with your words. I am also taking elmiron and some natural suplements under my ND gidance and I am doing really well latelly. My only problem now is that I have a lichen simplex in my pubic area that from time to time gives me some itching and annoying symptoms but I am working on solving this too with my ND help.
    Congratulations on your wonderfull and healthy new life!
    IC diagnosed by symptoms at the end of september 2011.
    Other conditions:Asthma (controled since 13 years old )

    PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

    Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

    First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

    Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

    Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

  12. #12
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    Re: Sending hope and health! :D

    Great post JinnyJean! Always love your encouraging words and positivity!

  13. #13
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    Re: Sending hope and health! :D

    This is such a great post. Thanks for sharing. I too am feeling pretty good these days with the help of Elmiron, supplements and yoga. I do need to clean up my diet as I eat too much sugar, but that's more for my overall health than IC.

    Keep these posts coming, Jenn. You are such an inspiration.
    Officially diagnosed with IC: 3/30/15

    Current treatment plan:
    Elmiron 2x100 mg
    Elavil: 25 mg
    Atarax: 25 mg
    Probiotics
    Yoga at least twice per week (to replace PT which ended December 2015 after 8 months)
    IC diet

  14. #14
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    Re: Sending hope and health! :D

    What an amazing post, Jenn!! I love your positivity. Thank you for giving others hope. You hit the nail on the head with your post!

  15. #15
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    Re: Sending hope and health! :D

    Thank you for your post - I wholeheartedly agree with your conclusions. You are lovely, inside and out. Much love, peace and blessings to you!

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