Dear IC Warriors,
Some of the common expressions that I hear in the IC groups that I am a part of and through communication with my readers are as follows:
“I don’t think I can do this anymore!”
“Nothing is working!”
“I have changed my diet and added in supplements and I can’t seem to get any better.”
“The pain is too much to bear.”
“I hate my bladder. I need a new one.”
I hear you. I really hear you. Trust me when I say this. I have been where you are and to be honest, even now, I still feel defeated on really difficult days. I have probably uttered the above statements word for word at some point in the past. So trust me when I say that I hear you, I understand you and I feel you!
No doubt, having interstitial cystitis is going to be one of the greatest challenges that you will face in your lifetime. If you are lucky enough to be diagnosed at your first visit to the doctor following the onset of your troubling IC symptoms, you are one step ahead of the rest of us. Most of us spend months and possibly even years having no idea what the heck is wrong with us and feeling repeatedly frustrated, let down and downright angry at the lack of knowledge of this disease in the medical community at large.
Once you receive a diagnosis, the real battle begins. Do you try Elmiron? The only drug targeted towards IC patients that I was once told may work for some people and not for others and can have nasty side effects, like hair loss. What about bladder instillations? An invasive procedure where Elimiron and/or other drugs are injected directly into the bladder wall. You could change your diet and eliminate all acidic foods, which unfortunately consist of your favourites like chocolate, coffee and wine.
You are presented with options. However, none of them seem the least bit desirable and some are downright painful or scary. What are you to do? Where do you turn to for support and guidance?
Like a lot of you, the first place you turn to is a support forum, such as the one on the Interstitial Cystitis Network. At least people understand you there and you may be lucky enough to come in contact with someone who has had enough success with a particular treatment for you to be persuaded to try it. What I found was that having the support of others with IC was great and for that purpose, these forums are awesome no doubt, but they’re not exactly the most inspiring place to be.
Most of us there seemed to be stuck on the word “chronic,” meaning ongoing and most likely for life. You see, interstitial cystitis is a chronic inflammation in the bladder. You are told by your diagnosing urologist that there are ways to try to manage the pain and horrendous symptoms, like peeing 10+ times a day (heck, I was peeing 10 + times a night at one point!), but THERE IS NO CURE. Let that sink in for a minute. THERE IS NO CURE. Wow, thanks doc! Way to crush my future hopes, dreams and goals in one painful sentence.
Okay, now here’s what I have learned over the past 10 years of having IC. I researched online and in books endlessly, sought out alternative practitioners to help me, like naturopaths and nutritionists, and I even went on to study holistic nutrition myself. What I know to be true from the core of my being and what I have known on some level all along, is that it is possible to heal from interstitial cystitis.
Have I healed it fully? Nope. Am I headed in that direction? Absolutely. Do I know other women who have healed from IC and have had no trace of it for several years? Not personally. But their stories are out there in growing numbers (thanks to the Internet) and they provide the only proof I need to believe that the statement, “There is no cure for IC,” is unfounded and even dangerous.
There is no “cure” because the medical establishment has not found a “cure.” Do I believe they ever will? No, I don’t. They are so out of touch with all that is involved in the chronic disease process and have no concept of how to support bringing the body, mind, spirit and soul back into balance safely and holistically. There is also the fact that each individual with IC has come from a different place and has different imbalances and malfunctions at play. Personally, I don’t even like the word “cure” and besides this open letter to you, I don’t really use it all that much. I suggest you throw that word out the window!
I am writing this letter to you, my fellow IC warrior, because I know this journey is certainly not easy and there are going to be times when you seriously believe that you can’t go on another day, even another minute. But please, when you feel like this, think of this letter. Think of me and all of the other women and men out there who are in this with you. Your struggle is my struggle is OUR struggle.
You can do this. No, you will do this. Breathe into your belly. Breathe deeply into your pain and into your frustration and hold them compassionately. Even in your darkest moments, you can find hope and reason to go on. Take out your journal and write about your pain, but don’t forget to write about what you are grateful for. Your husband, your kids, your best friend, your mom, vanilla ice cream and Justin Bieber and all of his shenanigans (just joking, but I am Canadian haha). The people in your life need you, even though I know you feel useless at times when all you can do it lie in bed in pain. But trust me, they do and you need them too.
As much as this journey is scary, there are pearls of wisdom, joy and ecstasy along the way and you will come out of it with more depth, compassion and strength than when you went in.
Where do you begin? I created this 4 week course to help you get started. You will learn the basics of an IC diet and about supplementation and lifestyle changes that can propel you forward in your healing and set you off in the right direction. Read through my other blog posts for information and inspiration and seek out other practitioners, healers and friends who can help you on this crazy, but wonderful journey.
I am here if you need me.
YOU CAN DO THIS and you will do this.
Much love and gratitude to all of my fellow IC warriors.