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Is everyone suffering?

Posted on: Mon, 07/14/2008 - 08:03
Is everyone suffering?

Hi everyone,

I am just posting this thread to see if I am the only one or not.  I don't know about you all, but since I have had IC, it seems like so many people I run into are so ill with intestinal problems.  It is shocking to me.  I can now always spot someone who has intestinal problems especially looking at their midsections and under neath the eyes.  I live in San Diego and I am convinced that so many people here have issues because of our water quality.  When I first moved here for college, I was shocked at how poor the water was.  It tasted like a mix of "plant life" (I think algae) and chemicals. I guess that is the type of water to expect when you live between L.A. and Tijuana.  So many people I know think that they have Crohn's Disease and it is frightening to see their health deteriorate.  I am also continually surprised at the rise of ADHD and autism cases.  It seems like so many people I know have a child or know somones who's child is diagnosed "mild spectrum" autism.  What scares me is regardless of how the children get autism, it has been proven that diet helps alleviate symptoms of autism, but at my son's school, I saw teachers using candy as rewards for autistic children.  At the same time, the teacher said the child could not have gluten because he was sensitive.  WOW!  Just scary I think.  I think it is the sugar causing imbalances in the intestines that makes the child gluten sensitive.

Just wanted to post and see what other's experiences are.  Are you not all just compelled to help?

Jeanette


Posted on: Fri, 07/18/2008 - 06:27 #1
on a different road
People often feel sorry for me because of all the things I can't eat--sometimes I feel sorry for them!! Because they don't have such a powerful motivation (like the pain of ic) to take care of themselves. When it comes to the diet, I feel worse about not being able to eat things like tomatoes, nuts and fruit than junk. I tell people I am not on a health food diet--I am on an ic survival diet, because there are many foods that are healthy that I am unable to tolerate. People do think I'm strange and I know they feel weird around me, stuffing their faces while I sit there and say I ate before I came. It is awkward for me too, and whenever I try to explain ic and yeast I sometimes feel like I'm digging myself into a bigger hole, lol!! they just don't get it and sometimes the more I try to explain the more confused they look and the weirder they probably think I am. The people who make the best patients of this treatment, in my opinion, are those who have tried everything, got worse, and hit rock bottom. Because this isn't a quick fix and there are many uncomfortable symptoms from die off, you have to be sold out to get through it. I realized that in order to get out of pain, I had to go through some pain, but it was a pain that meant I was getting better instead of worse. To most people, any kind of pain and suffering is bad and health means an absence or covering over of all pain, not proper function in the body. So, I guess I kind of let people follow their own course and hit rock bottom on their own, lol!! All I know is, they don't want to listen. They're not suffering enough (yet) to give up the junk.
Posted on: Wed, 07/16/2008 - 09:21 #2
what to do?
I somtimes get overwhelmed by the amount of misinformation out there- realizing that much of what is considered healthy is so far from it. I know that feeling of people thinking you are going overboard in the material choices we make- diet, cleaning supplies but its just that the status quo is so messed up in the first place. Even though the surface might appear okay people may be contributing to a weakness in thier body that will manefest in any number of ways. I am so sensitive to changes in my body- like if I'm coming down with a flu I can feel it a day or two before it hits me. this is only because I needed to care better car of myself so I started paying attention to things that others might not connect. Even though I often feel like I am explaining/defending my position in health- people cannot deny that I look and feel better since I entered this program. I was wondering - does anyone have any suggestions for how to educate folks on IC/yeast syndrome and its many accompanying conditions- as well as proper nutrition introduction without sounding preachy. People somtimes feel guilty about food especially- sugar which creates a kind of taboo complex of overindulging cause its forbidden? Is there any literature/sources out there that might be a good introduction for folk? What has helped you sucessfully dialogue others about IC and health? What are some things we can do to raise awareness about IC. I have a feeling alot more women than the projected 700,000 have IC but do not know it. thanks for your thoughts and I am releived to know others out there are thinking about this- and have experienced some of the same stuff! Mary

Honeybee

Posted on: Tue, 07/15/2008 - 21:14 #3
I agree

Jeanette, I am right there with you. After reading Matia's dissertation as well as a book about the rise in autism & ADHD cases it seems obvious that I am surrounded by people suffering from digestion issues. And yes, I feel compelled to help. I am forever singing the praises of probiotics, but it seems most people are so into the Western Medicine approach and are not really that intrigued by being able to heal themselves. But when I do come across those people who are open to alternatives it is so rewarding for me to share what I know. Going to the grocery store is an eye opening experience, aisle after aisle of processed food, look at what is in people's carts and it gives you an idea of what's going on. We've lost touch with what food is all about. And we have also lost faith in our body's ability to heal and place our fate in the hands of medications. I can't believe how many people I know will go to the doctor for antibiotics any time they are sick - not because it's a life threatening illness but because they think their body needs it in order to get well. When I started this program with Matia, I didn't get it at all, I just knew that I needed to do it because the doctors I had seen previously not only offered me no hope or compassion they also scared me a lot. I believed in Matia's program from the start, but it probably took me a couple of years to start understand what it was all about. Now that I've read her dissertation I feel like I finally get it. And don't even get me started on the kids & candy thing. They use candy as a "treat" for kids at the center where my son has OT, luckily my son knows that when he eats skittles & gummy bears he feels terrible, but I think they're sending a terrible message to both the kids and the parents that sugar is OK. From what I've read, autism & ADHD are another digestion based disease so sugar is the last thing these kids should be eating.

 

Yes I do feel compelled to reach out and help people, and I read one of your recent posts about feeling like you need to do something with what you have learned and that you aren't sure what that is yet. I feel the same way, my eyes have been opened to a completely different way of living my life and I feel like I should do something to help spread this knowledge.

Posted on: Tue, 07/15/2008 - 06:52 #4
yes
It does seem like alot of folks I meet are dealing with issues that are related to bowel problems. I see folks who are constantly on antibiotics for chronic sinus infections. I think folks have just been this way for so long that it becomes normal to them-they trust their doctor to make them better and their problem is just something to correct the syntomns with an over the counter or pharmacuetical prescription. One thing I have noticed is that when folks see me on the diet- my choices in eating- they assume I am eating that way to lose weight. I am not- I am quite thin and have to be careful about my proportions. I tell them I am on a healing diet and its to strengthen my body and they look bewildered as though the thought never crossed thier mind before. I am compelled to help folks when they speak of how they suffer but they often do not want to see the connection between the things they put in their body and their health issues. I wasn't going to change the way I was eating until this devastating IC thing happened and the choice was then very clear to me. people are very attatched to things that are unhealthy for them- soda, corn syrup- alcohol, junk/processed food. people can be skeptics too when confronted with wholistic medicine philosphy. Its a pretty big challenge but I think our example is pretty powerful. I just want to say how much I appreciate the wisdom and awesome information thoughts and experiences that everyone has shared thus far. Maybe people will continue to sufferbut they will start asking why they feel bad and find some answers. In the meantime-cook healthy things for friends and family to get folks to taste how good food can be when its wholesome and teach them moderation for treats. I somtimes think people have forgotten what real food tastes like or they just grew up on overprocessed fast food from the beginning.

Honeybee

Posted on: Wed, 07/16/2008 - 08:26 #5
I agree
I agree. It truly amazes me the amount of negative reactions I get in reference to my diet. People thinking that I am on this diet to loose weight and therefore to be skinny(since I am a young woman in New York I think this is an even more prevalent issue.) People also seem to only focus on what I am missing out on...'how could you not eat this or that.' I often feel an intense judgement against a way of life that has helped me. It is this 'bewilderment' that I respond to and experience often as well. So many of these people are the same people who eat a protein bar full of sugar or drink a muscle shake in place of vegetables that come from the earth and/or a meal that you prepare yourself. My biggest frustration here is the inability to truly enable others to listen or not to preach. I often feel the need to defend my beliefs in food and find few who truly understand what it is that I'm talking about.
L
Posted on: Wed, 07/16/2008 - 08:47 #6
Also agree
I completely agree too. I continuously feel that I have to explain why I am not eating certain foods that people think are quite healthy. Some people think that I am going to far with all the changes I have had to make not only with food, but water, cleaning supplies, cosmetics etc... For those that are seeing the changes I find that they are questioning my choices a little less. Kristeen

Kriste

Posted on: Sun, 08/03/2008 - 01:38 #7
Hey
I feel for everyone who feels like me. I am hoping this is the right place to express personal experiences of physical and metal stress due to the illness Interstitial Cystitis. Though I've had the name branded for two plus years I know it's been there my whole life, in some form. Oddly enough, I'm not completely convinced IC is exactly what I have, as pathetic as that may sound. I have consistent and unrelenting bladder spasms, I have frequent urination issues, I have used narcotics and barbituate-type drugs sometimes in excess only to feel brief moments of physical lucidity in order to pretend I'm normal. But the reason I still entertain other prognoses stems from the IC "food litmus test." I have found no food that reacts in any way differently from any other food that has ever gone into my body, acidic, basic, whatever. For 7 months I was on the styrofoam-like diet with no results. I spent the same amount of time on THAT ONE western remedy IC medication, I can't remember the name of it currently but I'm sure many of you know what I'm talking about. I guess I don't really have a question, and I don't want to waste anyone's time, just know there is one more person out there who has the same kind of feelings you might, who has virtually no social life, who puts on an act for friends and collegues who have no idea why I never want to go out, or have a girlfriend. Probably the worst part about it is knowing how much more of a life I could have if things were a little bit different, to not have obsessive thoughts about how exactly I'm going to feel today or next week or during that not too distant vacation that anyone else would look forward to - or better yet, not having those fears realized in exactly the way they were foreseen. There is always so much more to say but I'm going to try and go back to sleep, another worthy antithesis to my very soul. Thank you for providing the wall on which to let loose this graffiti of self-rightesnous indignation. -Ben
Posted on: Sun, 08/03/2008 - 06:54 #8
To Ben
Hey Ben: I am not sure if you are a patient of Matia's. I am a new patient of about 2.5 months. I also have many of the same feelings that you have. I think that the only difference is that I have hope that I will have a more normal life in the future. Hope is so important. It helps when we are having those bad days. It is very frustrating to not be able to participate in life to the degree that one would like. I have had to cut back on my work hours since January this year due to this illness which definately hurts when you have a family. I cut out my running club, I didn't go to the fireworks last night for fear that I would not be able to get to the bathroom ( of course this is just a very small list of the changes I have made). Due to my improvements since being with Matia, I know that this won't be forever. I see this as a temporary situation. Things might never be exactly the same, such as what I might be able to eat but I do think that that might be for the best as I am felling and looking healthier with the new habits I am developing. Don't get me wrong I do still have my dark moments but when this happens I look at what has changed for the better. I do have symptoms that nag at me and worry me but according to Matia this anxiety is normal. So just knowing that this is normal allows me to cope. It has been helpful to read some of the success stories when people describe their feelings because I see that what I am feeling is normal. I wish you all the best Ben and I do hope that you can find some hope. I f you do not see Matia, you might want to consider it. I do not live near Matia but I made the choice to go to see her and I do not regret it at all. I did try conventional methods and also other Naturopaths but had no success or hope until I saw Matia. Recently I told my Urologist and my Doctor about what I am doing and they said keep on doing it. I think because they see that my mood and my appearance has changed for the better.

Kriste

Posted on: Sun, 08/03/2008 - 09:27 #9
Thanks
Thanks for your kind words - I don't know Matia. Though I have tried several routes to recovery including intense physical therapy and pelvic allignment, acupunture and eastern allergy remedies, months of bladder installations where they inject medicine directly through a cathiter (my personal favorite) none of which yielded anything but temporary or placebo affects, I haven't given up. I still have hope, but the ceiling on my expectations have been lowered so many times that I feel like I'm crouching near the floor. The hardest part is feeling the degeneration set in day after day. At least a few years ago I had as many good days as bad, now each day my only hope is to dilute the pain as much as possible through medications. I was lucky to have held down a job the past year and am preparing to start teaching again very shortly. Thanks for taking the time to read what I wrote, I don't talk to anyone on any significant level about what I'm going through. I realize at the same time that there are many people much worse off than I am so I am grateful for everything I still have and am empathetic to everyone. -Ben
Posted on: Mon, 08/04/2008 - 12:08 #10
Ben
Ben, I too can empathize with what you are going through! seriously, it is so hard to deal with all the limitations this disease can put on your life. You are welcome to post about things you are expereincing to get some feedback, suggestions and support. This is a safe positive environment with respectful and kind people and great information! IC is a lonely isolating disease and its truly a testement to your courage that you are dealing with this largely alone! Since I had tried many approaches- western/naturpathic/acupuncture without any real changes in my IC it was a little scary for me to try out Matia. But at the same time I felt like I had nothing to lose. I live all the way across the country and it took me some time to coordinate the trip out there and be ready to mentally/physically/emotionally commit to Matia's diet/herb protocal. I have been on strict diets and received acupuncure before. Those treatment may have helped me in some areas and in the long run but it didn't make me better in my IC. possibly it may have made it worse simply by cleansing too strongly before I was ready! In the short time that I have been with Matia- about 10 weeks I have seen some very encouraging progress. I still have bad days but I also have seen changes that I beleive will be permanent/ever improving (with my continued good care.) If you haven't read the success stories yet I would check them out- there are folks who have suffered from IC since they were children and they were able to get better. I think that one difference in treatment style of Matia is she treats very uniquely and specifically for each person. every little detail matters. patience and perserverence are very important things to have in going into healing this.In chinese medicine when our bodies imbalence's are corrected then health can reestablish itself. It seems that IC is sort of a new imbalence compared with other dieases- I get the feeling we are in uncharted territory. It seems to require a special approach to deal with it. I beleive Matia has been working on treating this imablence for 11 years or more? I haven't yet read her dissertation but I am looking forward to understanding more about IC and how it can be corrected. unlocking the riddle of each person's imbalence is the challenge but its not impossible. again patience and perserverance. even if everything else has failed this might be the thing that does work .consider looking into seeing her! any of us who experiences improvement is happy to share what has worked for us because the traditional treatment success is usually so dismal! keeping a positve attitude can be difficult at times but I am having good days again so hope is starting to bloom in my life. Some folks can't hang with the treatment or its not a good fit for their life or a style they feel comfortable with. there are different paths of healing/treatments for everyone and that is just fine. The whole thing felt right to me but I still needed some time to think it over and explore my options. The trip out to LA was amazing for me- truly wonderful getting to meet super awesome smart profoessional -with a capital P Matia and Raquel her very cool/knowledgable receptionist. right now I feel more stubborn than my IC imbalence and this is reinforced each week as changes happen. may you find your path to healing and find /pain/anxiety freefom and vibrant health whatever that may be. thank you for your empathy to us out there going through it! if you are crouching near the floor then you got nowhere to go but up! gassho ( hands together in respect) Mary

Honeybee

Posted on: Sat, 08/16/2008 - 13:34 #11
I agree with both of you

I agree with both of you Kriste and Honeybee!! And I understand exactly how you are feeling Ben.

IC has brought me to an area in my life that I never thought I would be in. It truly can isolate us and makes us feel like it's not worth living like this. I've often felt at the lowest point of my life because of this illness.

However, I do think that hope is what has kept me going. I have tried countless doctors, eastern and western, traditional and naturopatic, I mean, Everything. From one to the next, I was carried by hope. Dr. Matia gives me a kind of hope I had not experienced until now. I know I will become the healthy person I once was. Perfect health seems far from me now, but now, it doesn't feel impossible to achieve anymore.

Thank you to all that read this and understand. I've definitely met some judgemental people too. It feels good to come here and share bits of my feelings with you all.
And Ben, I hope you find the way to your healing.
:)