New Year Hope 01/02/2012
 
For this first post of 2012 I would like to offer you a post filled with hope.  There are many other IC patients like myself who have gone into remission and just like how each IC patient's IC is different, how we put our IC into remission is also unique and different.  The hope is that remission is a possibility.  Also, I would like to continue to point out the new treatments, diagnostic protocols and drug therapies that are on the horizon.  Now more than any other time there are technologies, doctors and researchers who are going to change the current paradigm in important and significant ways.  It will be a time as important and helpful to our society as the discovery of penicillin, studying human cells under microscope and other significant  break-throughs which have advanced medical science. 

There is so much hope in a world of severe pain and a diagnosis of 'incurable' that I know how difficult it can be to see past the end of a week or a month or a year.  Dear IC patient there are so many people working towards ending your suffering and I hope to bring you these stories of hope and transformation in 2012.  Hold near the people who provide you with support and comfort and hold onto the hope and possibility of the future of IC, for someday soon its diagnosis will be one of a name not so filled with terror but of 'yes, it's IC and here is how we're going to treat it'.  It is my hope for all of us.
 


Comments

Kate smiley
01/18/2012 08:16

For years I abused my body as I suffered from both bulimia and anorexia. My body at the time was so resilient and was determined to support me despite my maladaptive behavior. Now, I am seeking treatment for my eating disorder and my body has finally surrendered to a chronic bladder condition.

I am new to all this and feel very hopeless. I have had several bladder instillations and tried the medication toviaz. Now, I am currently taking aloe Vera, baclofen, pyridium, cymbalta (for anxiety), and stool softeners. I have also drastically changed my diet. I have not felt relief in 3 months and this has drastically changed the quality of my life.

Today, I begin physical therapy. I hope this will serve as a gift to my body. The silver lining is that I now realize how precious our physical health is. I appreciate what my body gave to me. Now, I want to give back to my body.


Reply
chris drew
01/19/2012 19:04

I was diagnosed at the moderately severe stage. (Most people are diagnosed at the mild stage.) Rather like Dante's levels of hell, really - which part of hell was your starting point? Does it matter?

My first uro, Dr. Blunt in the San Diego area, as part of the diagnosis, stretched my bladder with cold water and without anesthesia. His wife/nurse had to climb on top of me as I shrieked. He was upset because I screamed in pain. I was obviously a a wus, hysterical prima donna...it couldn't THAT bad!!

I was crippled by bladder spasms for weeks.

Pre IC, I can't tell you how much scorn I had for desperate souls who couldn't accept their illnesses and who tried all sorts of quackery. Yet, as my desperation heightened, "someone said xxx cures IC" and I'd trot right out to buy a cure from the health food store" - "hey, it says "health" in the store title, doesn't it? I am buying health."

I did the "no guai, no gluten, no milk products, no acid foods, etc...." diets. Rather than answering "What do you have to stay away from" - I was saying "I can have..." because it was simpler.

Fortunately, Dr. Parsons came into my life.

As my professional and personal life went down the tubes, I dealt with "we are almost finished here. Surely you can certainly hold it for another two minutes."

My mother was put on the MAOI diet. I went from starting every day with a glass of OJ and a cuppa coffee, etc. to preparing a meal for both of us. Within a few weeks, I noticed improvement.

I went into almost total remission for a few years.

My regimen is/was:
The MAOI diet.
Forcing table salt without silica - no "when it rains, it pours"
No "day old" -

The better I felt, the more stringently I followed the diet, the better I felt.

No day old bread.
No growth hormone in meat.
No oxalic veggies.
No tyramines.
No fermented.
No preserved.
No soy.
No silica in my salt.

So here I am, dealing with IC again. But I did have a break. A beautiful, blessed break.

Now, let me add a caveat. This is what worked for me and my brand of IC. I offer it for you to try and wish you luck. I got 3 years of total remission and a slow descent into full blown IC again. But I am alive and I would never have been able to live with the disease without the respite.

Reply
chris drew
01/19/2012 19:04

I was diagnosed at the moderately severe stage. (Most people are diagnosed at the mild stage.) Rather like Dante's levels of hell, really - which part of hell was your starting point? Does it matter?

My first uro, Dr. Blunt in the San Diego area, as part of the diagnosis, stretched my bladder with cold water and without anesthesia. His wife/nurse had to climb on top of me as I shrieked. He was upset because I screamed in pain. I was obviously a a wus, hysterical prima donna...it couldn't THAT bad!!

I was crippled by bladder spasms for weeks.

Pre IC, I can't tell you how much scorn I had for desperate souls who couldn't accept their illnesses and who tried all sorts of quackery. Yet, as my desperation heightened, "someone said xxx cures IC" and I'd trot right out to buy a cure from the health food store" - "hey, it says "health" in the store title, doesn't it? I am buying health."

I did the "no guai, no gluten, no milk products, no acid foods, etc...." diets. Rather than answering "What do you have to stay away from" - I was saying "I can have..." because it was simpler.

Fortunately, Dr. Parsons came into my life.

As my professional and personal life went down the tubes, I dealt with "we are almost finished here. Surely you can certainly hold it for another two minutes."

My mother was put on the MAOI diet. I went from starting every day with a glass of OJ and a cuppa coffee, etc. to preparing a meal for both of us. Within a few weeks, I noticed improvement.

I went into almost total remission for a few years.

My regimen is/was:
The MAOI diet.
Forcing table salt without silica - no "when it rains, it pours"
No "day old" -

The better I felt, the more stringently I followed the diet, the better I felt.

No day old bread.
No growth hormone in meat.
No oxalic veggies.
No tyramines.
No fermented.
No preserved.
No soy.
No silica in my salt.

So here I am, dealing with IC again. But I did have a break. A beautiful, blessed break.

Now, let me add a caveat. This is what worked for me and my brand of IC. I offer it for you to try and wish you luck. I got 3 years of total remission and a slow descent into full blown IC again. But I am alive and I would never have been able to live with the disease without the respite.

Reply



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