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Hey everyone! I am posting this in hopes to help at least one other person out there suffering with this very horrible life changing condition. I want to post some thoughts and things that I wish someone had told me (perhaps my urologist) when I was diagnosed w/ this condition in December of last year. This condition is not curable however I belive most of us can get to a place where we are able to live a good quality of life and have hours at a time with minimal to no symptoms - even have moments where we actually forget we have the condition - can go out for the day and not have to use the bathroom every 45 minutes to an hour.
I am 34/female and was diagnosed at the end of last year. Early in the year I had a bladder infection-went away w/ antibiotics, then another one in November-went away w/ antibiotics and then what I thought was another one in December - did NOT go away w/ antibiotics. I started having pain in the following months and noticed white worm like things in my urine (now knowing that is inflamation).
I won't go into all of the doctors I saw numerous times, tests I had done, procedures I had or ALMOST had done, all of the googling I did - the researching and endless hours upon hours of trying to find anything that would help me at least mask this discomfort and keep me out of the bathroom as it is a very long story. The money I poured into trying to get better I feel partially was wasted.
What I will go into are the things that I learned through working w/ people, reading websites and experimenting w/ foods/drinks mixed w/ experiencing real symptoms and pain but also in the end a lot of no symptoms and pain. First I want to say that I am doing very well. I have several hours throughout every day where I forget that I have this and I do not wake up in the middle of the night to go to the bathroom. Here is the mix of things I do and take that have gotten me to this point:
-natural homeopathic allergy shots/I saw a doctor in this area that does this allergy testing. I tested very allergy to a lot of things I eat on a regular basis: wheat, oats, peanuts, coffee and the list goes on. They found my neutralizing dose for each of these things (a couple I had to eliminate for 30 days before I could add them back into my diet) and I give my self shots 1-2 times a week depending on how my allergies are doing.
-calcium citrate/Diana Brady suggested this to me. I take 150mg put out by the company Allergy Research 3 times a day one hour before meals: This helps flush out oxalates in the urine and has allowed me to eat a lot of oxalate containing foods with out repurcusions. This was a big thing that helped me in getting to the best place I could be with this condition. Diana actually offers counseling here through the ICN and also has her own website and book. (I'd highly recommend all!)
-I used to use scented soap - I now use the bar of soap sold here on the network - this helped a lot.
-I used to use sensodyne toothpaste - now I have found an Arm and Hammer one w/ no sorbitol. This really helped too.
-I do not use candles and stay away from pretty much anything chemical in nature that puts out a smell as usually it immediatley gives me symptoms.
-Another major thing that I've done that I think has helped me get to this place is I drink only evian water and one cappuccino in the morning. I make the espresso myself w/ Pure Roasts Low acid coffee. I have it grinded down to be suited for espresso. I say this was a big deal b/c I am a coffe-aholic. I tried giving up my coffee but couldn't do it. Tried cutting back to one cup of low acid coffee - this still gave me problems. I happen to love cappuccinos and when I read that the way it is made makes it less acidic and less caffinated I thought I'd go out and get myself a little mr. Coffee espresso/latte machine and give it a shot. I take 3 Prelief and thoroughly enjoy my huge much of cappuccino daily. This has brought me back one of my crutches that makes life enjoyable.
-The other thing that I find helps is Prelief. If I eat anything tomatoey at all or that I think may be acidic I take 3 Prelief.
-Fish Oil - I take twice a day - the second one I take at bed time. I use the ones offered here on the ICN.
-Vitamin D3
-Evening Prim Rose Oil
-natural progesterone cream (I take breaks from this - 3 months on 1 off)
-Folic acid/B-12 shots (I also credit Diana with this).
-Oxybutynin (a fourth of a pill as needed) I don't have to take this ever day and on occassion may take a half a pill.
-Probiotic - one pill in the morning on an empty stomach
-Glucosomine/MSM - twice a day
-DIET!!!!!! The last and probably most important thing is I read every label of everything I eat, I talk to waiters and waitresses at restaraunts. I have found that educating myself on the problem ingrediants and foods has helped significantly in learning how to cook now for myself and how to order out for myself. Diana gave me guidance with this but a lot of it was learning to read labels. I have found to avoid certain preservatives at all costs but then there are others that I can do in small incriments. I took the bad not safe ingredients from the ICN food list and from other websites. I tried first for a period of about two weeks to not eat anything that contained them. This helped my bladder calm down significantly. Then once I had periods of no symptoms I could eat something and tell if it bothered me or not. I learned how to adjust my diet to figuring out what I could and could not eat. I do still cheat and most of the time don't pay horribly for it. I've learned to be okay w/ "cheating" meaning having a fountain root beer w/ ice or half of a glass of my sacrid sweet tea. I do not consider eating lemons, drinking alcohol, eating things w/ lots of preservatives "cheating" those things are now forbidden to me. However, I still get to enjoy so many things that this new way of eating is not bad and in fact is way healthier than I have ever eaten. Although I still eat potato chips, candy bars and other things that are labeled junk. I just read the labels and/or do so in moderation. I don't drink anything other than 1% milk, evian water or tap when out and I have to and occasionally a fountain rootbeer or a half a glass of sweet tea.
Anyway, I had felt like I had lost my love of life. Of course I still had wonderful things surrouding me but I was not happy. I was quite miserable for many months. Now I feel like a person who is back in control of herself and her happiness. I hope that reading this may help guide others into finding things that help them. Also please feel free to PM me at any time with any questions. I am not a doctor and may not be able to help but I am more than willing to try.
I pray that everyone with this can AT LEAST get to the level that I am at.
Best of luck!
Allisun
PS
Disregard my Currently taking and contemplating lists below - I need to update these to match this post.
Also - although I do pray someone finds a magic bullet I feel more at peace with this now that I am doing so much better.
I am 34/female and was diagnosed at the end of last year. Early in the year I had a bladder infection-went away w/ antibiotics, then another one in November-went away w/ antibiotics and then what I thought was another one in December - did NOT go away w/ antibiotics. I started having pain in the following months and noticed white worm like things in my urine (now knowing that is inflamation).
I won't go into all of the doctors I saw numerous times, tests I had done, procedures I had or ALMOST had done, all of the googling I did - the researching and endless hours upon hours of trying to find anything that would help me at least mask this discomfort and keep me out of the bathroom as it is a very long story. The money I poured into trying to get better I feel partially was wasted.
What I will go into are the things that I learned through working w/ people, reading websites and experimenting w/ foods/drinks mixed w/ experiencing real symptoms and pain but also in the end a lot of no symptoms and pain. First I want to say that I am doing very well. I have several hours throughout every day where I forget that I have this and I do not wake up in the middle of the night to go to the bathroom. Here is the mix of things I do and take that have gotten me to this point:
-natural homeopathic allergy shots/I saw a doctor in this area that does this allergy testing. I tested very allergy to a lot of things I eat on a regular basis: wheat, oats, peanuts, coffee and the list goes on. They found my neutralizing dose for each of these things (a couple I had to eliminate for 30 days before I could add them back into my diet) and I give my self shots 1-2 times a week depending on how my allergies are doing.
-calcium citrate/Diana Brady suggested this to me. I take 150mg put out by the company Allergy Research 3 times a day one hour before meals: This helps flush out oxalates in the urine and has allowed me to eat a lot of oxalate containing foods with out repurcusions. This was a big thing that helped me in getting to the best place I could be with this condition. Diana actually offers counseling here through the ICN and also has her own website and book. (I'd highly recommend all!)
-I used to use scented soap - I now use the bar of soap sold here on the network - this helped a lot.
-I used to use sensodyne toothpaste - now I have found an Arm and Hammer one w/ no sorbitol. This really helped too.
-I do not use candles and stay away from pretty much anything chemical in nature that puts out a smell as usually it immediatley gives me symptoms.
-Another major thing that I've done that I think has helped me get to this place is I drink only evian water and one cappuccino in the morning. I make the espresso myself w/ Pure Roasts Low acid coffee. I have it grinded down to be suited for espresso. I say this was a big deal b/c I am a coffe-aholic. I tried giving up my coffee but couldn't do it. Tried cutting back to one cup of low acid coffee - this still gave me problems. I happen to love cappuccinos and when I read that the way it is made makes it less acidic and less caffinated I thought I'd go out and get myself a little mr. Coffee espresso/latte machine and give it a shot. I take 3 Prelief and thoroughly enjoy my huge much of cappuccino daily. This has brought me back one of my crutches that makes life enjoyable.
-The other thing that I find helps is Prelief. If I eat anything tomatoey at all or that I think may be acidic I take 3 Prelief.
-Fish Oil - I take twice a day - the second one I take at bed time. I use the ones offered here on the ICN.
-Vitamin D3
-Evening Prim Rose Oil
-natural progesterone cream (I take breaks from this - 3 months on 1 off)
-Folic acid/B-12 shots (I also credit Diana with this).
-Oxybutynin (a fourth of a pill as needed) I don't have to take this ever day and on occassion may take a half a pill.
-Probiotic - one pill in the morning on an empty stomach
-Glucosomine/MSM - twice a day
-DIET!!!!!! The last and probably most important thing is I read every label of everything I eat, I talk to waiters and waitresses at restaraunts. I have found that educating myself on the problem ingrediants and foods has helped significantly in learning how to cook now for myself and how to order out for myself. Diana gave me guidance with this but a lot of it was learning to read labels. I have found to avoid certain preservatives at all costs but then there are others that I can do in small incriments. I took the bad not safe ingredients from the ICN food list and from other websites. I tried first for a period of about two weeks to not eat anything that contained them. This helped my bladder calm down significantly. Then once I had periods of no symptoms I could eat something and tell if it bothered me or not. I learned how to adjust my diet to figuring out what I could and could not eat. I do still cheat and most of the time don't pay horribly for it. I've learned to be okay w/ "cheating" meaning having a fountain root beer w/ ice or half of a glass of my sacrid sweet tea. I do not consider eating lemons, drinking alcohol, eating things w/ lots of preservatives "cheating" those things are now forbidden to me. However, I still get to enjoy so many things that this new way of eating is not bad and in fact is way healthier than I have ever eaten. Although I still eat potato chips, candy bars and other things that are labeled junk. I just read the labels and/or do so in moderation. I don't drink anything other than 1% milk, evian water or tap when out and I have to and occasionally a fountain rootbeer or a half a glass of sweet tea.
Anyway, I had felt like I had lost my love of life. Of course I still had wonderful things surrouding me but I was not happy. I was quite miserable for many months. Now I feel like a person who is back in control of herself and her happiness. I hope that reading this may help guide others into finding things that help them. Also please feel free to PM me at any time with any questions. I am not a doctor and may not be able to help but I am more than willing to try.
I pray that everyone with this can AT LEAST get to the level that I am at.
Best of luck!
Allisun
PS
Disregard my Currently taking and contemplating lists below - I need to update these to match this post.
Also - although I do pray someone finds a magic bullet I feel more at peace with this now that I am doing so much better.
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