Wednesday, March 30, 2016


So Adam and I headed home to New Mexico, we headed out to the trails, to the mountains, to see friends and family.   I was terrified, I wasn't sure what I was going to eat and if you read my previous post, you will see that it was not the smoothest ride in terms of food.   

To be honest, the trip wasn't the smoothest trip we had taken.   I experienced a flare, and I dislocated/relocated a bone in my foot and learned how to use crutches.  The morning I woke up feeling the flare, was one of hyper focus.  Both Adam and I took our best guess at what food might have caused it and decided to avoid that for the rest of the trip, and he focused on packing while I took my medication and got back in touch with my body.   I practiced my breathing and relaxation techniques, I cried and probably screamed a little bit.   Eventually I calmed down enough to be able to sit in the car while Adam drove, we listened to funny audiobooks and did our best to keep me calm.   

Everyone is different, and each of my flares have been different.  This flare was mostly bladder spasms, and although I knew eventually they would pass.  It changed our leisurely morning and I just wanted to get back to my parents house where I would be able to rest and be close to a bathroom.  

So how do I travel with IC?  I still don't really know.   I find a balance between enjoyment, pushing my limits, respecting my body and relaxation.  As we were driving, I told Adam that we were crazy to try this and it was time for me to realize travel was too difficult.  He continued to assure me and remind me that each time we test my limits we learn something new.   That we will continue to learn and grow through this experience.  (Of course my bladder was spasming, so it fell on deaf ears.)

I tend to have this all or nothing mentality, and slowly I am working to break that pattern.  Slowly I am learning to accept that things change in an instant and it is okay to let the plan change.  I continue to fall down, and to push people away when I am frightened and hurting, slowly I am learning it is okay to let that go and just say I am frightened.  Slowly the fences I built, are starting to get holes, and sometimes that means that I feel raw and even more frightened.  However when I try to hide behind the same fence, it is no longer as strong as my desire to let love in.   

 Question of the day: What motivates you to keep going when your mind tells you to give up?  Where is your focus in those moments, the moments when you keep walking, when you keep your vision?  What breaks you free from your mind's lies?

Sunday, March 27, 2016

Tuesday, March 22, 2016


Expectations kicked my butt the first morning Adam and I were in Taos.  When we decided to go travel and to experiment and figure out how to travel and manage my health, I approached it with my normal attitude and just assumed I would be able to power through.  "Just keep going". Which my little mind turns into push it until you have nothing left, push it until I collapse from mental, emotional or physical exhaustion.   Again I continue to struggle with the concept of enough is, enough, and to speak up when enough is enough.  

Adam and I walked into a breakfast place, and I immediately felt like I did not want to eat there.  However, I didn't feel like it was okay to speak up, because we had already put so much effort into finding a place we thought I might be able to eat.  Breakfast in New Mexico used to be my favorite meal, green chile burritos were a staple growing up, and they are a huge treat when my Dad makes them for us when we come to Albuquerque to visit.  So realizing that the cost of eating green chile, eggs, flour might be too much to pay feels isolating.    

So I ordered something off the menu, and sat in the booth with Adam forcing myself to hold back tears, until they just kept spilling over.  As my emotions just continued to build and my frustration to communicate became an issue eventually I had to take a break from being around Adam.   So I walked, and found that there was no way to run away from myself, from my emotions.   After stopping at a grocery store I called Adam and said I just needed to cry,  he said he would hold me.  That it is okay that I want to cry sometimes, that language is so difficult for me, that I don't need to tell him why.  I can just ask him to hold me while I cried.  

So instead of going out hiking, and getting out in nature we drove back to our hotel.   Adam made me a blanket fort in front of the fire, and held me while I cried, while I muttered nonsense and eventually fell asleep.

We spent the day exploring different places and finding an ice cream shop with local, high quality ingredients that also served lunch and I felt comfortable eating.   We didn't get out and go hiking, the day had other plans for us and in the end it was a wonderful day.  However I woke up the next morning still having difficulty, still upset that we didn't get out hiking or make it to Pueblo.  Because my mind continues to spin this story that I am an inconvenience and burden to Adam, that he is not able to do as much as he wants because taking care of me holds him back.   (I don't hear him tell me, that the most important part of this getaway was to spend time with me.).  

He continues to tell me, he has amazing patience as we both learn to live in a new way.  It is a new way that leads us to take afternoon naps, to find random places to eat and to realize that it is not a healthy idea for me to spend an entire day out hiking, right now.   We are learning to communicate in new ways, and eventually when that little voice speaks up and says "don't eat here."  I will start to not just listen but express that voice.     

The land here is beautiful and I long to just get lost in the trails; that was not a healthy choice at the time.  So I will continue to do what I can and learn how to pay attention to my body and how to communicate that enough is enough.   

Question to consider:  When is the last time you woke up early just to watch the sunrise, to enjoy the start of a new day and open yourself to all the possibilities that day holds?   No expectations just acceptance.   

Monday, March 14, 2016


There is this quote that floats around the Internet and it shows up in my Facebook feed periodically, and recently it has popped up a lot in my head.  "You either get bitter or you get better...."    Well to quote some wisdom from my father "good luck with that."

These two things are not mutually exclusive.   There are days that I feel bitter, there are days that I feel frustrated, angry, sad and all of those "dark" feelings.   Typically those are the days that I want to hide in a blanket fort and make sure I don't interact with anyone.   Those are the moments when I am terrified that I will burst into tears, or that I will take out my feelings on those that I love the most.  Those are the moments when I probably need someone to help take care of me, to make me laugh, to hold me and those are the moments when I push people away.   

So what is it?  Why is it not acceptable to acknowledge those feelings?  Why is it not acceptable to hold those feelings and to allow myself to be seen?  Why does the mind tell me to remain in the dark?  

I can continue to sit in the dark and ponder those questions that have no real answer or I can find out what happens when I ask someone for a hug. Some days I do stay in the dark, some days I reach out, and some days I lash out and some days I get a hat trick and do all three!   This is when I look for inspiration that speaks to me, instead of haunting me.   I read recently "your pain does not make you unique, what you chose to do with it, makes you unique."   

So I come back to that question.  "What do I want?"   Right now, I want to feel safe, accepted, and be able to relax.  I can identify the places where I feel safe to allow those feelings to pass, the people that I feel safe with and the people that are patient enough to listen.   Because there are people that get it, there are people that don't see light and dark, that simply see someone that feels.   

I have had the privilege of talking to a number of different people that have been diagnosed with IC, or other chronic diseases.   I have had the pleasure of listening to their stories and their suggestions about what helped them, and their continuous search for things that enable them to live the best life possible.   I asked one of these people "how do you travel?"   She said simply "I don't."   Those words kept echoing inside me, they kept haunting me.    

Because I keep asking myself "how do I travel?"   How do honor the limits of my body and also honor the desires of my heart to go back to see friends and places that awakened parts of me?  How do I honor the desire to continue to find things that speak to me?   This is when the gremlins come out and tell me to "give up, your life is over."   This is when my mind ignores the people that are telling me that I am making progress, that they can see a difference.   That every case of IC is different, and everybody is different that it is great to listen and share stories with people but their story is not my story.  

So Adam and I will head to the mountains.  I will bring with me my tool kit of herbs, medications, physical therapy techniques, relaxation techniques and do the best I can with my diet.  Adam will be there to hold my hand and to continue to encourage me.  Out of all the people in my life he has seen me at my worst and has continued to support me, to be patient with me and to push me.  There are no words that can convey my gratitude and love to him and for him.

The only way to find out how to live my life with IC, is to live it and continue to find out what works and what doesn't.  To embrace the feelings, the hurt and to understand that this too shall pass.

Question of the day:  What do you want right now?  What is one action you can take towards that, instead of simply imagining what it would be like to have it?

Sunday, March 13, 2016

Sterling Sunday

I took a scary fall yesterday, Adam and I were playing with some of the movement exercises he learned at a recent Ido Portal workshop, and I lost my balance and fell.   Immediately, Sterling was by my side. As Adam and I talked about what hit the ground first, and he checked me for a concussion, Sterling crawled up and laid down on me, just as I said, "I don't think I should move yet."   That little puppy knows.   Since the day we brought him home 10 years ago, he has and will continue to be my little healer.  

Recently he has really been showing his age, and was recently diagnosed with Cushings disease.  So the early mornings, right after he eats have become a special time.  I am usually in the middle of my physical therapy exercises, but he wants to play.  So I stop and play with him, it is usually not a long time he tires and wants to take a nap pretty quickly.  It is long enough to remind me to take the time to be grateful.  

It is heartbreaking to watch my little dog get older and I worry that he is in pain.  I have no way of knowing, and so I watch him and learn from him.  Because he knows, and has never given up on me. 


Thursday, March 3, 2016

Saying "Yes"

I write from my own experience, and as I continue to write and explore myself and my feelings both on the blog and in my personal journals I catch glimpses of the fact that my experience is worth sharing.  These are small tiny beams of light, that remind me I am worth it, that I am wanted, that accepting love is safe.   

So when I write about having a chronic illness or feeling trapped inside a body that is out of balance, I am only speaking from my experience.  What I have learned, what has worked, what has failed, what has stopped working, and what has gone back to working.   It is huge experiment and I am easily frustrated because a lot of the time I am not quite sure how to interpret all the signals in my body.  I have a hard time discerning what helps to strengthen and what might be hurting me.   

I woke up this morning, with a giant to do list.  Normal activities such as physical therapy, grocery shopping, taxes, laundry, acupuncture session, cooking, tea with a friend, and class in the evening.   Some of these things are "shoulds," some are "want too," and some are "have to/get to."   So as I began my physical therapy exercises, I noticed a decrease in my mobility, and then the pain started.   So I went to the comforting positions to help bring down pain levels and to bring me back to breathing, and the pain kept increasing.   

I finally woke Adam up earlier then he wanted, and asked for some help with the pain.   Not to fix it or take it away, but he is able to provide comfort and sometimes manual therapy can help.   The whole time I kept running my list through my head, and it continued to add to my stress.  Mostly I was worried about not being able to do the thing I really wanted to do, I have been looking forward to tea with my friend since she scheduled it.   Even though she would understand if I had to cancel, I wanted to go.   So I took everything else off the list, except my acupuncture appointment.   

Now I am sitting in my house, evaluating if I can go to tea and it makes me feel sad and lonely that I am faced with these choices some days.  On the other hand I am grateful that I have these choices, that despite the pain and exhaustion there are still things I want to do, that I am excited about.   That gives me hope, it gives me the hope that I will continue to learn about my body and how to treat it better so that I will find a way to thrive.   That on the tough days I will become more accepting of my limitations and understand it is compassionate to take it easy.   Because right now, I still fight it.  I might be taking it easy, but my mind isn't resting I am still frustrated that I can't do things I could do yesterday.   However I don't know what I will be able to do tomorrow either.   

I will go to tea, I might leave earlier then I want.  I might need to rest a little bit extra because I pushed it, or I might be energized.   There are infinite possibilities.  I want to go spend time with my good friend, to hear about her latest excitement and adventure.  I want to seek some perspective on my situation and learn how to communicate with people better.  

I get to sit here, listening to Sterling snore as a reminder it is okay to rest.   Now I just have to accept that, I get to accept that I am still lovable even when I don't get everything done, that I am still lovable when I ask for help, that it is love to listen to my body and learn again when it is okay to push the edge and when it is time to grab my herbal wrap and relax.   

Question of the Day:  What did you do today that you really WANTED to do?   There is still time.