What's IC About?

"It’s about having a deep, burning pain that pain medications barely touch. It’s about sharp, shooting pains and dull aching pain 24 hours a day for many of us. And it’s about the constant discomfort on top of that pain.  It’s about feeling as if your body is falling apart and that there is just one thing wrong after another. It’s about not knowing how you’re going to feel from one minute to the next and no longer being able to make like a normal person. It’s about not feeling like yourself anymore and not being able to do the things you used to do. It’s about being left out of things because you’re ‘not well enough to attend.’ IC is about having an invisible disease. It’s about having pain that no one can see and symptoms that no one understands. It’s about having family and friends look at you like you’re a hypochondriac or a wimp. It’s about being told you’re crazy when you’re totally and completely sane..."

-Excerpt from Catherine M. Simone's "Along the Healing Path." This is exactly how I felt when I was first diagnosed with IC... but it does get better! I highly recommend reading this book.

Help Your Body Heal Itself

"Your body is a self-healing organism.  By bypassing its natural self-repair process and handing all your power over to a doctor, you might be ignoring the very thing you need to heal."

In the following article, Dr. Lissa Rankin discusses ways that we can promote our own healing.  Always remember that you know your own body best! Happy healing!

Mind of Medicine: How to Help Your Body Heal Itself

IC On the Go - Larabars

Lately I've been incredibly busy.  So busy, that it's a little harder to take the time to prepare all of my meals. During these times, I turn to another grab-and-go treat that I can rely on to satisfy my hunger and not set me off into a flare: Larabars!

Similar to the Kind Bars I mentioned in a previous post, Larabars are energy bars made with entirely unprocessed ingredients.  I make sure to stock up on some before a road trip or a flight, or when I know I'm going to have a long day.  This way, I'm not tempted to eat something that could potentially trigger pain.

Of course, everyone has different triggers, but I never seem to have a problem with  Peanut Butter Cookie.  This consists of peanut butter, dates, and some salt. If you have an issue with peanuts or any salt content, I suggest trying Cashew Cookie, which is purely cashews and dates. The bars are pretty delicious and will give you an instant energy burst (which we all need, considering most of us can't tolerate coffee!).

In my area, they are available at various supermarkets, including Vons, Trader Joe's and Whole Foods.

Enjoy, and happy healing! xx

A Year with IC

Today, August 20th, marks one year since I underwent my cystoscopy with hydrodistention and was diagnosed with IC.  I feel like I should be having a party! If I'm stuck with this shitty disease, I might as well celebrate its anniversary, right?

All kidding aside, I was shocked today when I looked at the calendar and realized that a year had passed.  This year has been by far the most challenging and rewarding year of my life.  Rewarding?! I know, but don't call me crazy yet.  In my reflections, I realize just how much I've learned and just how much I've grown during my involuntary partnership with IC.

A year ago today, I woke from my surgery to hear the following three things: chronic, forever, and no cure. These are words that no one ever wants to hear with regards to an illness.  My immediate reaction was to throw myself a pity party.  "Why me?" I asked myself again and again, feeling sorry for myself for my recent prognosis.  I cried, sulked, and lashed out at those closest to me who weren't suffering, those who couldn't feel what I was feeling.

As time passed, I learned to accept my fate.  I realized that my negative attitude was not conducive to healing.  If my mind wouldn't accept my diagnosis, how could my body begin to heal.  Instead of basking in my self pity, I decided to take control of the situation that life had handed me.  I began looking at life through a different lens, fostering a positive, fearless attitude that has changed the way I handle any struggles that come my way. Along this new, happier road, I've learned many valuable lessons that I believe, regardless of chronic illness, have led me to a happier, healthier life.  These are lessons that everyone needs to learn in life, regardless of your physical or emotional state.

1. Be kind to yourself.  Learn to accept what is going on in your life and with your body.  Don't try to battle it.  Don't blame yourself. Practice compassion towards yourself and others on a daily basis. 
2. Listen to your feelings. Your body and heart will always tell you what is going on, and will always point you in the right direction. 
3. It's okay to slow it down.  It's okay to take a break and say no to others in order to put your healing first. If they are good friends, they'll understand.  If they don't understand, than do you really need them in your life anyway?
4. People will disappoint you when you need them most.   Friends disappear and become less understanding; some can't make sense of your lifestyle changes.  Let them go.  There is no time to worry about pleasing everyone in the world.  Just worry about getting better.  There are those who will be there for you regardless of what you are going through.
5. People will also amaze you. During my time with IC, I've been blessed to have the support of some amazing individuals, both old and new friends, health care practitioners, and strangers who provide me with the love and hope that I need when the going gets tough.  I wish I could just give them all a giant hug, because they have been absolutely incredible. 
6. It can always get better.  There were days when I was so completely miserable, not wanting to leave bed because of physical and emotional pain.  Now, I have so many days where I forget I even have an illness, and I continue on with my life almost as it was before.  Did I ever think I would get here? No! It's important to remember that nothing is permanent, and that there is a light at the end of every tunnel.
7. Healing is possible. Healing also takes lots of time.  Patience is the most important virtue I've honed in on during my time with IC.  We are always looking for instant gratification.  Healing and feeling better is possible, but we must understand that it won't happen overnight.  It takes dedication, hard work and a strong mindset.  We all have our setbacks, and the road to good health is not a straight shot.  However, just remembering that healing will happen is enough to keep me on the right path.
8. Bad things can lead us to something wonderful. When I got sick, I didn't realize that IC would lead me to a completely different calling.  Because of my illness, I am now pursuing a degree in nursing to eventually become a Holistic Nurse Practitioner, so that I can help others who are afraid and in need. 
9. Everyone is fighting some battle. Look at people with IC.  We are fighting an invisible disease.  Most people look at me and think that I am perfectly healthy, which I don't blame them for! There are so many other people in the world who are also fighting invisible diseases and battles, so it pays to be kind.  You never know what anybody else is going through.
10. Appreciate the little things. When your life is turned upside down overnight, it can be hard to let go of what has been lost due to illness. Don't take life of your health for granted, even with your sickness. When you are having a good day, enjoy it.  Savor it, and think to yourself, "this is nice." Learn to look at the cup half-full.  Take a walk, watch the sunset, enjoy the company of good people, and you will instantly have a smile on your face, regardless of whatever else maybe going on. If you confront each day with a positive attitude, you will be a lot happier in the long run. 
11. When it comes down to it, and all else seems lost, a cup of tea, a hot bath, and a heating pad can cure all sorts of ills :) 

As the Grateful Dead sang, "Once in a while you get shown the light, in the strangest of places if you look at it right."  I've found the light in my IC, where (at one point) I never thought I would find any happiness or hope.  For that, I consider myself chronically grateful.

I  hope that you can take my lessons and find some positives in your healing process as well!

Happy Healing, xx.

Experiencing Setbacks

I have a confession to make.  Recently, I've been feeling good.  So good, that sometimes I almost even forget that I have IC (almost). I've been feeling really amazing, with minimal symptoms and pain.  When this is the case, it is so easy to forget what we've been going through and the goals we have set. Over the past weekend, I got distracted with the joys of living a pain-free life.

So, what exactly did I do in my moments of weakness? I cheated on my strict diet.  Not terribly, but enough.  I went out, had couple of drinks with friends, and indulged more than usual.  After doing so, I experienced no residual pain whatsoever.  I was ecstatic! Could I truly be getting better? Feeling stoked, I decided to take it a step farther - I went for a run.  Now, running is a HUGE flare inducer for me, but I was feeling so great and just had the strongest urge to run down the cliffs by my house.

Big mistake- about a mile and a half in, there it was - cramping, stabbing pain in my pelvis.  I had to stop, and almost fell over to the ground because it was so excruciating.  Somehow, I managed to slowly walk back to my apartment without passing out.  The spasming subsided, and I truly feel completely fine now. A little frightened, but fine.  However, was there a major lesson learned? Absolutely.

I'm not angry at myself for my behavior over the weekend, because I am human and it can get really hard sticking to such a strict and boring diet.  However, the experience serves as a reminder that I still have a long way to go to being better.

So, what will I do?

• I will get right back on the path to health, putting myself and healing first.
• I will be kind to my body and nurture it as it deserves to be.
• I will eat soothing, calming foods, particularly for the next few weeks.

What won't I do?

• I won't get discouraged about my healing progress.
• I won't get stressed or angry at myself for my mistake. 
• I won't attempt more than one "cheat" activity when I'm feeling good. We should always remember to ease our way back into normal activities. For example, try only little bites of trigger foods, have small sips of trigger drinks, and don't dive full force into any rigorous activities. 
• I won't indulge in anything that I know is causing more harm in the long run until I am back in a good place.

We all have our days and our weak moments, but it is important to remember that healing is a long journey.  We can't expect results overnight.  Even when experiencing minor setbacks, know that and we can always bounce back to where we were.  It can always get better.

Happy healing!

Where Western and Eastern Medicine Meet

I have long been a proponent for the combination of Eastern and Western medical practices.  I feel so strongly about it that I currently am studying to eventually become an Integrative Nurse Practitioner (unfortunately, this won't be for quite some time since I received my undergraduate degree in something entirely different).  I believe that both sides of the spectrum have a lot of great things to offer, but practicing one without the other leaves out crucial elements that can help a person heal. In terms of IC, I'm a big fan of a "whole"-istic approach to treatment.. exploring all possible avenues- and I feel that not enough (if any) doctors actually do this.

 In the following article, Dr. Robin Friedlander argues for the integration of both Eastern and Western practices for the best overall care. Check out the article below!

Where the Private Practice Model Still (Sort of) Makes the Most Sense

Radiate Love

via Rosie Molinary

Radiate love and good things will come your way.  Positive vibes lead to positive feelings. Remember, your mental state has a lot to do with how you are doing physically! Breathe deep, relax and know that you can feel better. 

Happy healing! xx