I got a comment on the IC Network Forum from someone who didn't agree with what I was doing to heal my body. I find the IC network to be my 'Frenemy', so to speak. I feel like much of my thoughts and views are censored greatly there (as many of my posts have been edited or outright deleted by the moderators there). They have all kinds of legal rules that they are bound to, and I do try to adhere to those rules since I see myself as a guest in someone else's house. Honestly, it is the ONLY reason why I started this blog...to be able to speak more freely about all my 'crazy' ideas including RAW milk (gasp!) and grain free eating (AHHH!) :).
But I keep going back to the IC network because I feel like that is where you can find the most desperate people who are suffering the most from IC. I myself spent countless hours there when I was first diagnosed. My userID there is minharopaola and later minharopaola+ (some kind of computer glitch happened to my first user ID). Look me up. You will see how I started very naive and clueless about what my healing journey would entail. I was naive enough to thing that by just going Gluten Free, I would get better. HA! :)
Anyhow, back to the comment that differed from my experience. Here is what was written:
My response:
Hi Megad,
Thank you so much for stopping by and thank you so much for your comments. I'm so sorry you have struggled so much and that now you're on a pain pump that doesn't work. It's an awful awful disease.
Donna is always a helpful 'devil's advocate'
to the different comments I've posted. I've always welcomed her and anyone's input that differ's from my experience because the whole point of my posts is to share experiences and knowledge. Clearly going grain free isn't right for everyone.
But to speak from personal experience, I have never been obese, and I did loose just a little bit of weight going grain free, but nothing like getting down to 95 lbs. That's very low. Hugs girl. I don't think anyone would begrudge the incredible relief from pain that going grain free has brought me. I was even off of milk and eggs for a long time because those would cause immense bladder pain within 30 minutes after consuming.
But your comment actually prompts an important point...I 100% think that grains are essential, and as the Bible says 'the staff of life'...going on the grain free diet (at first it was the autoimmune protocol diet, and now I've transitioned into the full GAPS diet) has allowed me to slowly heal my gut and it's beneficial bacteria. Today, I'm drinking raw goats milk (I selected this milk because it's easier digested...goat's milk digests in 30 minutes and cows milk takes 3 hours! Wow, right?) and I'm back to eating pasture-raised eggs. I hope to once again eat properly prepared grains in the future. True Paleo people never hope to eat grains again because I think being Paleo is a life-style (much like vegans are life-long vegans). But my goal is to heal my gut and eat according to the principles of the Weston A Price foundation.
When I first started this post way back when [it's actually longer than a year because my "Part I" posts is even older ], I was in horrible pain, Seriously horrible pain. You all know what I'm talking about.
Today, I am literally 90% better. But please be mindful, I'm absolutely not making any recommendations for you or for anyone else. I just know how helpful it is to share my experience and to be responsible with my follow up so that others can track one girl's POSITIVE healing experience with IC. I actually feel 98% better as far as symptoms go, but I will consider myself 100% cured when I can eat a variety of properly selected/prepared foods, including grains.
My healing trifeca has involved...
1. Diet...some sort of grain free eating (again, at first it was the AutoImmune Paleo diet, now it's the full gaps diet, and soon I will start hopefully reintroducing grains)
2. Homeopathy for my chronic and acute problems (so I'm on homeopathic remedies for my IC and dermographia --itching skin, and whenever I get sick with something like a bladder infection or strep throat--ALL OF WHICH I HAD! I will go to the doctor, get the diagnosis/culture, then I fill the antibiotic prescription, and then I work with my homeopath on treating the illness completely free of antibiotics. So far my family and I have an ever growing pile of unused antibiotics. I also make sure to go back to my doctor for another culture to make sure the infection has cleared, and it always has. To me and my IC, I have learned that antibiotics load the gun, and my genetics pull the trigger. The Mayo Clinic told me point blank that my dermographia--all over body itching autoimmune disease--was caused by antibiotics!)
3. Live blood analysis where the doctor/practicioner looks at my blood live under a microspcoe, and based on how my blood is behaving he has prescribed me specific supplements to help me continue healing. I'm taking a total of 2 supplements right now (digestive enzymes and adrenal support), and the rest of my nourishing comes directly from the high-quality food I eat. I agree with you, Megad, that too many supplements is a waste for me and my IC. The live blood analysis doctor I see is in Arizona and people can find him if they type in 'Grant Divine Nature' [I will be making a post about this topic in a week or so...more to come]
Anyhow, thank you so much for stopping by, Megad. I hope you can find relief to your pudendal neuralgia. I don't know much about that so, I don't have any ideas for you. But I hope you can find healing. Please don't give up! I know our bodies can heal themselves if we prod them in the right direction...but the 'right direction' can mean so many different things for different people that it is very hard to figure out. I know.
I send you my sincere best and good wishes,
MP (Paola)
This is a long blog post, I understand that, but I think it's important to bring in 'the other side' of the argument. Healing is so different from everyone. If you look at my 'checklist' page on this blog, you will see that I list pudendal nerve issues as a possible root cause for my IC, which I explored with an excellent chiropractor for over a year. When I finally concluded that my PN was fine, I moved on to more gut-healing strategies. It's so hard and slow to figure out what the root cause is, but if you go grain free and you experience ABSOLUTELY NO RELEIF, I think you may be barking up the wrong tree? But what do I know!? I'm just a girl who has IC who is 90% better and who is sharing my journey with others.
You are the master of your body. You know it better than anyone or any doctor. And if you don't, you should.
I truly believe that we can completely heal from IC, if you can just find the right place to point yourself. Maybe it would be through doing the vegan-based detox that my friends on the IC Facebook group are doing (more info here: https://www.facebook.com/groups/HealedIC/), or maybe it would be to find a great chiropractor to help release your PN? Or maybe it would be to heal your gut?
Hopefully my story is helping you sort things out.
Hugs everyone. We really can heal this.
But I keep going back to the IC network because I feel like that is where you can find the most desperate people who are suffering the most from IC. I myself spent countless hours there when I was first diagnosed. My userID there is minharopaola and later minharopaola+ (some kind of computer glitch happened to my first user ID). Look me up. You will see how I started very naive and clueless about what my healing journey would entail. I was naive enough to thing that by just going Gluten Free, I would get better. HA! :)
Anyhow, back to the comment that differed from my experience. Here is what was written:
"This thread is about a year old, but I came upon it and wanted to pipe in...Im with you!
When I first had IC symptoms in 206-2007, after some frustrating visits with doctors etc. I tried the alternative route ..I too bought the many supplements, I travelled to Phila. PA for 2 weeks to have dally acupuncture, and tried the various anti-inflammatory diets.Im the LAST person who should be doing those diets, as Ive been underweight my entire life, having to eat lots of food from every food group just to maintain a normal weight of about 112 to 115 at the most.This is my genetics.
These diets scared me, but my symptoms were so bad, that like you I'd do anything to rid myself of that constant urge to urinate...Well several dollars and months later,
(after eating a diet of veggies, meats, fish and the allowed fruits...and giving up gluten and many carbs-(something my skinny body needs) I found myself 20 lbs skinnier, yes only about 95 lbs at 5' 6' tall!, with no improvement in IC symptoms whatsover.
All I had now was lots of confusion about what was "safe" to eat and a brand new case of anxiety! I lost my hips, my butt and all my natural padding.. and cushioning around the pelvis.
Soon after I developed pain with sitting (in sit bones).. diagnosed as Pudendal Neuralgia .we tried everything imaginable to get me better,but nothing worked and my anxiety (which is a genetic factor for me) was sky-high and still is. I blame it partly on all this contradictory diet stuff espoused on these sites.
such as if we don't follow the Paleo type diets we are bound to develop other" inflammatory conditions.".. Since I now I have PN I wonder if its all true! so confusing . Since Im still so sick it haunts me. I eat much more variety these days but haven't been able to gain back much weight due to worry.
In reality Im an intelligent woman, I had agreat corporate career with IBM -- in my pre-mommy days, and now my hubby and I are raising 3 great loving and successful kids,so I should know better than to let this diet stuff traumatize me.
I now have a pain pump (which has not worked yet ) and seems to make it harder for me to urinate.
I know you have one too and Im so glad its helping you.
In my case, the surgeon placed the darn thing right over my poor bladder as Im very tiny, It seems to get in my way when I pee, aggravating my original problem.
We are giving it a bit more time and then we'll see.
Long story short --Stress management is something I need the most-- to get well!
I wish there was an "alternative" somewhere in between western and alternative medicine. I was taught growing up' by my dad, "everything in moderation" So true!
Its hard for me to believe that in order to get well I'd have to go on a diet that extreme. The majority of Americans are overweight these days, hence all the fad diets.
But its just not an option for me.. and rest the of the skinny folks out there. We would be in the hospital with malnutrition or worse.
Hearing such dietary info makes me think I'll never get well, but there's got to be a better way for me.
Again thanks for being the voice of reason in this long thread!
Good luck!
Kathy"
Thx for posting your opinion..It was the voice of reason amongst everyone esle...
My response:
Hi Megad,
Thank you so much for stopping by and thank you so much for your comments. I'm so sorry you have struggled so much and that now you're on a pain pump that doesn't work. It's an awful awful disease.
Donna is always a helpful 'devil's advocate'
to the different comments I've posted. I've always welcomed her and anyone's input that differ's from my experience because the whole point of my posts is to share experiences and knowledge. Clearly going grain free isn't right for everyone.But to speak from personal experience, I have never been obese, and I did loose just a little bit of weight going grain free, but nothing like getting down to 95 lbs. That's very low. Hugs girl. I don't think anyone would begrudge the incredible relief from pain that going grain free has brought me. I was even off of milk and eggs for a long time because those would cause immense bladder pain within 30 minutes after consuming.
But your comment actually prompts an important point...I 100% think that grains are essential, and as the Bible says 'the staff of life'...going on the grain free diet (at first it was the autoimmune protocol diet, and now I've transitioned into the full GAPS diet) has allowed me to slowly heal my gut and it's beneficial bacteria. Today, I'm drinking raw goats milk (I selected this milk because it's easier digested...goat's milk digests in 30 minutes and cows milk takes 3 hours! Wow, right?) and I'm back to eating pasture-raised eggs. I hope to once again eat properly prepared grains in the future. True Paleo people never hope to eat grains again because I think being Paleo is a life-style (much like vegans are life-long vegans). But my goal is to heal my gut and eat according to the principles of the Weston A Price foundation.
When I first started this post way back when [it's actually longer than a year because my "Part I" posts is even older
], I was in horrible pain, Seriously horrible pain. You all know what I'm talking about.Today, I am literally 90% better. But please be mindful, I'm absolutely not making any recommendations for you or for anyone else. I just know how helpful it is to share my experience and to be responsible with my follow up so that others can track one girl's POSITIVE healing experience with IC. I actually feel 98% better as far as symptoms go, but I will consider myself 100% cured when I can eat a variety of properly selected/prepared foods, including grains.
My healing trifeca has involved...
1. Diet...some sort of grain free eating (again, at first it was the AutoImmune Paleo diet, now it's the full gaps diet, and soon I will start hopefully reintroducing grains)
2. Homeopathy for my chronic and acute problems (so I'm on homeopathic remedies for my IC and dermographia --itching skin, and whenever I get sick with something like a bladder infection or strep throat--ALL OF WHICH I HAD! I will go to the doctor, get the diagnosis/culture, then I fill the antibiotic prescription, and then I work with my homeopath on treating the illness completely free of antibiotics. So far my family and I have an ever growing pile of unused antibiotics. I also make sure to go back to my doctor for another culture to make sure the infection has cleared, and it always has. To me and my IC, I have learned that antibiotics load the gun, and my genetics pull the trigger. The Mayo Clinic told me point blank that my dermographia--all over body itching autoimmune disease--was caused by antibiotics!)
3. Live blood analysis where the doctor/practicioner looks at my blood live under a microspcoe, and based on how my blood is behaving he has prescribed me specific supplements to help me continue healing. I'm taking a total of 2 supplements right now (digestive enzymes and adrenal support), and the rest of my nourishing comes directly from the high-quality food I eat. I agree with you, Megad, that too many supplements is a waste for me and my IC. The live blood analysis doctor I see is in Arizona and people can find him if they type in 'Grant Divine Nature' [I will be making a post about this topic in a week or so...more to come]
Anyhow, thank you so much for stopping by, Megad. I hope you can find relief to your pudendal neuralgia. I don't know much about that so, I don't have any ideas for you. But I hope you can find healing. Please don't give up! I know our bodies can heal themselves if we prod them in the right direction...but the 'right direction' can mean so many different things for different people that it is very hard to figure out. I know.
I send you my sincere best and good wishes,
MP (Paola)
This is a long blog post, I understand that, but I think it's important to bring in 'the other side' of the argument. Healing is so different from everyone. If you look at my 'checklist' page on this blog, you will see that I list pudendal nerve issues as a possible root cause for my IC, which I explored with an excellent chiropractor for over a year. When I finally concluded that my PN was fine, I moved on to more gut-healing strategies. It's so hard and slow to figure out what the root cause is, but if you go grain free and you experience ABSOLUTELY NO RELEIF, I think you may be barking up the wrong tree? But what do I know!? I'm just a girl who has IC who is 90% better and who is sharing my journey with others.
You are the master of your body. You know it better than anyone or any doctor. And if you don't, you should.
I truly believe that we can completely heal from IC, if you can just find the right place to point yourself. Maybe it would be through doing the vegan-based detox that my friends on the IC Facebook group are doing (more info here: https://www.facebook.com/groups/HealedIC/), or maybe it would be to find a great chiropractor to help release your PN? Or maybe it would be to heal your gut?
Hopefully my story is helping you sort things out.
But I do have one bold statement to make. How many times have you heard of allopathic (traditional) medicine curing a chronic disease like IC? Never. Literally never. But how many times have you heard of natural medicine healing these? The stories are out there. They are there. Stick with it. Natural healing is the way to go if you want to reverse your problems.
Hugs everyone. We really can heal this.
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