One day at a time.

My weekend took an unexpected turn as early as Friday afternoon. I don't want to go into detail now (I might cry) but we had to say goodbye to our kitty, Darby. It was one of the hardest, saddest things I think I've ever done. I may share more about this later, and I may not. It may be too fresh, my heart too raw. All I know is I love and miss her. 

The weekend, not surprisingly, was different. I went to Beach 69 with Beth and enjoyed re-charging in the sun. Life is so fragile and precious. I certainly am in a place of taking stock of my blessings. We had a great time - sparkling turquoise water and white sand - the sky, vibrant and blue. A quick trip to Costco followed - my first time in there. I'm in love with that place! A 35 pound bag of dog food, 2 cartons of berries and a pair of cozy sweatpants later, we were in the car headed home. 

Crohn's-wise, I felt pretty good for most of the day. Snacks included a hard boiled egg, cashews, pumpkin kernels, some weird soybean crisp thingies (probably not a repeat for me), and a bit of chicken breast.  By the time we got to Costco I started feeling funky and I knew that if i could just lie down in bed, or strike a yoga pose or two, I could probably relieve my discomfort pretty quickly. Since those options weren't really available, I went into my "grin (or grimace) and bear it" mode. On a pain scale, it was probably a 6 or 7.  I ended up super nauseous on the ride home. Not quite "pull over! i need to hurl!!!" nauseous, but close. Once I got home, I stretched out in my new fluffy pants, some of the gas escaped, and all was good again. 

If anyone's actually reading this: I feel the need to apologize every time I refer to gas or bodily functions, but in all honesty, it's a daily reality for a person with Crohn's. It's a challenge to write about because it violates all rules of polite conversation. And yet, this is me. It's the life I'm living. It took me 90 some posts on this thing to get this real. It's an experiment in authenticity, I guess.

 All things considered, it was a good day. My life is full and I am blessed. 

The diet seems to be helping

So, it's been a better week, Crohn's-wise. I've actually had an appetite, consistently, day in and day out for the past several days. That's a big deal! I'd forgotten what it was like to feel hunger.

For the most part, my body seems to be tolerating the snacks and meals I've been choosing, and the encouraging news is, yesterday I actually reached around 1200 calories. I know the dangers of under-eating and it doesn't thrill me to have really low calorie days.

It appears that I'm on a better track than I've been on in a while. Avoiding (or at least limiting) starches, grains and sugars (for now). It's a daunting task if I think I have to do this 100%, for ever and ever. On the other hand, thinking that I'm just doing this today, for now, so I feel better, makes it easier. I've also added peppermint oil capsules with an enteric coating, (one, with water, 30 -60 minutes before eating).

I have to admit - in the morning and early afternoon I was EXTREMELY lethargic and sluggish. Bone tired. Exhausted, and even a little nauseous. To the point that I had to come home and just lie down. It seemed to wear off later in the day. I don't really know what that's about.... I guess I should keep track of those symptoms too. :(

Yesterday's food:
Breakfast:  1/2 cup coffee with creamer

Lunch: 2 thin hamburger patties with cheese, 1 strip of bacon, a couple dill pickle slices

Snack One: 2 tbsp Adams natural peanut butter with a drizzle of honey

Snack Two: 2 slices thin smoked deli ham, a slice of welsh cheddar cheese (a hard, aged cheese), a slice of lucerne monterey jack cheese

Snack Three: 3 Jolly Rancher hard candies

Dinner: 3 hot wings with a bit of ranch, and the toppings of a slice of Mediterranean pizza. I admit, I cheated an nibbled a bit of the bubbly end crust.

This was not 100% in terms of avoiding sugars, starches and grains, but it's a start. Seeing it in writing, it was a lot of cheese,  and the sugars from the candies, ranch and hot wing sauce aren't ideal. Even so, I had no distention in the stomach, no "D", no puking or vomiting, minimal gas. ( I cannot believe I'm writing about gas, specifically MY gas, on the internet). Such is the life.

I'm well aware this isn't an ideal diet by normal health standards, but if it makes my intestines happy, it's a huge improvement. Hopefully I can work more fruits / veggies into the mix soon.

I'm heading to the beach today, my happy place. Hoping that an afternoon of sun, sea and sand does a body good.

Where's YOUR happy place??

Finding My Way

On the surface, I've been optimistic about my health. You might say I've been wearing rose colored glasses. Convincing myself that "it's getting better" any time I'm able to eat something without having dire consequences. 

But delve a little deeper and you'll see that I've been panicking a bit. Stressing a lot. Scared and angry. Pissed off about my body rejecting food, and to add insult to injury, it's a rude, painful process. (Lots of gas, people). And bloating. But when I say bloating, I don't mean the "gee, I feel a little pudgy today" kind. What I'm actually referring to is a stomach distended as far (actually, further) than I ever thought humanly possible. Hard as a rock. Looking 9 months pregnant and due to deliver any moment. All from trying to eat a meal. 

And maybe the most powerful emotion of all (and the hardest one to admit) .... shame. At being broken. At having a defective body that attacks me when I'm doing my best to keep it happy and healthy. It's a lonely feeling and something that no one in my daily or personal life can relate to. 

People are well meaning. I'm given lots of suggestions, ideas and opinions - very few of which have any basis in research. There's the implication - at times - that I must be doing something wrong. That my illness is my fault. The "what are you eating?" question delivered in a well intentioned, but accusatory tone, is the one that gets to me most. Duh. Do you not think I've been trying to eat well? Yeaaaaah. After weeks, (to be honest, months now) of not feeling quite right, my patience, tolerance and positive attitude is being tested. 

It's a test I want to pass. I don't want to be a grouchy sick person who feels helpless. I want to be strong, healthy and whole. I want to educate myself as much as I can - knowledge is power, right? - without identifying as a sick, helpless person. 

There has to be a healthy balance. I know it's there. And I'm just not seeing it. I believe it will get clearer and clearer... just as I believe that with every day, I will be feeling stronger and better. 

With that said, here are my updates for the day: 

Slept well last night (VICTORY!!!) 

Able to eat breakfast (2 hard boiled eggs)

Found dry curd cottage cheese at Island Naturals and had it for lunch 

Enjoyed natural peanut butter with celery sticks for an afternoon snack

Ate dinner - chicken thigh and mashed cauliflower. 

My challenge for the day: 

I had a bit of mental fog - and struggled to concentrate at work until I was able to eat my eggs. 

Ummm... maybe too many eggs in the past 48 hours? Repeated trips to the bathroom this afternoon. Not fun to share publicly, but a reality, nonetheless. 

Realized how much I want a new job opportunity (not Crohn's related though, so yay!) 

My food choices were loosely informed by the Specific Carbohydrate Diet, though I need to do the Intro Phase if I'm REALLY going to stick to it. I picked up enteric coated peppermint capsules, which are supposed to soothe the intestines as well. I hear lots of gurgling and there's definitely activity in there, but I think I'm going to be able to sleep tonight. It's progress. 

All love and support is welcomed.

If you've never been diagnosed with chronic disease, then you probably don't personally know the emotional toll of riding the illness/wellness roller coaster. Unfortunately, I do, and last night I reached a point of surrender. I just wanted off the ride.

Here's a little backstory, to put today into context:

I was diagnosed with Crohn's disease when I was 21 years old and had a surgery to remove part of my intestines. Fast forward a few years - after a handful of hospitalizations, I decided I was sick and tired of being sick and tired. At the age of 33,  I set out to build a healthy new life. 

I made it my mission to do everything humanly possible to stay well. That meant changing my diet, starting an exercise regime and actually using stress management strategies, like refusing to get really stressed out, taking "me" breaks, deep breathing, meditating, journaling, etc. Exercise became a huge part of effective stress management. 

It was working! I lost 50 pounds, which is a lot on a 5'4" frame. I discovered that I was not, in fact, "big boned", as I had always liked to believe. And I felt as if I had this Crohn's thing beat. 

And then... 3 years into my new healthy life... a mere 3 months ago...  BAM! The problems started surfacing again. Pain when eating. Bloating, gas, cramping. Fatigue and low energy. I started losing more weight. Not being able to eat. Throwing up.  Not exercising regularly. I was stressing out about feeling ill, not using stress management tools, and before I knew it, my balance was gone. Like it just went POOF in the night. 

Last night was especially ugly. Between the hours of midnight and 2 am, my stomach was distended like a basketball. I couldn't stay comfortably in bed, and kept roaming the house searching for a way to alleviate the pain. I spent more than a few minutes on a blanket on the bathroom floor, begging for mercy, feeling too tired and too defeated to cry. I finally decided to try to take some prednisone to reduce inflammation. As soon as I swallowed them, I was puking. The good news is, that was enough to reduce my discomfort and I was able to sleep. From 2:30-6 am, I had relatively comfortable rest. I'm not asking for pity here, but you may understand my feelings of dejection if I explain that this happened two nights in a row (only one puking) after two really good days of feeling well. 

Which brings me to the here and now. I'm a huge mixture of emotions.  I'm actually kind of pissed. I'm tired of feeling tired. In the dark midnight hours, I feel defeated, lonely, scared, and somehow guilty for having created illness in my life.  I hate being scared of my own body. 

By light of day though.... I'm a bit more optimistic. I've gotten very good at convincing myself I'm getting better. But I find myself wondering, "at what point is positive thinking simply delusional thinking?"

Obviously, I need a wellness plan. I need to truly restore my faith in my right to be well. It starts today. It has to. My turning point 3 years ago was desperation for a healthy, normal life, and believing I could have it. I have to have that belief that it's possible again. 

Starting today: 

• I respond to myself with patience, kindness and grace. No more self induced guilt trips. No more shame. I have a health condition that I am doing my best to manage. And I am worthy of wellness. 
• I take EXCELLENT care of my entire being - mind, body, spirit. 
• I exercise every day in some way. Even if it's just a walk or treading water in the ocean. I engage in intentional activity for my well being every.single.day. 
• I look forward to challenging exercise. It makes me feel strong, healthy and accomplished. It helps me be the ME that I love being. 
• I eat healthful nutritious foods every day. Salads, nuts, smoothies, peanut butter,  an occasional piece of fruit. Some cheese. Chicken, turkey.  Eggs on occasion. All things in moderation. 
• I understand "moderation". It means fast food/ processed food no more than once a week. No rice, no potatoes. They're just not worth it. 
• Much more water than soda or coffee.
• No binges on sweets or chips / crackers / other processed crap. Those things aren't real food. 
• I save baked goods, pastries, etc. for special occasions (birthdays, socializing with friends). If I want a sweet treat before bed, a piece of dark chocolate it is. 
• I choose peace over stress.  I refuse to stress out over work. It's not worth it. Ever. I trust and know that it will all work out in the end. 
• I make time for daily meditation.
• I exercise, breathe deeply, pray, journal, and visit the beach to stay happy and balanced. 
• No more "woe is me" victim mentality. My health is mine. I am entitled to it. And I will have it. 

Fall is in the air! :)

I loooove the crisp, fresh feeling in the air right now. It's the feeling that life is pregnant with possibility. That anything can happen. And that magic is unfolding in this very moment.

If only I could bottle this feeling and sell it! I'd be a millionaire. :)

Yesterday was a lovely day: took a trip to beach 69 with Beth to celebrate Labor Day and close out my last day of vacation. She amused me so much - playing like a dolphin in the water. She could've stayed there forever!

The trip wouldn't have been complete without taking the coastal drive home and stopping for malasadas. Yuuuuuuuummmmmmmmmmmm. My belly is full and my heart is happy.

Today is my first day back to work. Thank goodness there's magic in the air - I may just get my workout mojo back after all!

Happy Fall, friends!! :)

Advice to a newborn baby

Today's question... 
Q: If you could instill one piece of advice in a newborn baby’s mind, what advice would you give?

A: ALWAYS KNOW YOUR GOODNESS. You are worthy. You are valuable. You are inherently good.  You don't need to prove your worth or value. You are deserving of goodness and blessings. Don't ever believe anyone who tells you that you are broken, damaged, inferior or inherently bad. You can refuse these messages lovingly, with compassion. Anyone who tries to dim your light somehow believes they are doing the right thing. Their beliefs are misguided but their essence is good.  Send them love. And always return to your center of goodness.  Use your precious life energy to add more light to the world, and do this without fear or reservation. There is no such thing as a light unworthy of shining. ALWAYS KNOW YOUR GOODNESS. 

Nurturing Thankfulness

Thankfulness. :) It's a concept I read and hear a lot about, but too often, it drifts about in my thoughts like a seed in the wind.

I really want thankfulness to fully take root in my being. To be firmly anchored and always present, growing stronger with each day.

And so, I will nurture it, like I would nurture a plant. Create ideal conditions and trust that it will reach full bloom .

Today, I am thankful for:

• the ability to see the goodness despite the storm. The Chick-Fil-A debate was flying around on facebook yesterday with friends and family landing on each side of the fence. What I noticed was that even the people who saw the situation differently than I do expressed their opinions without hate. I don't know if everyone saw it that way, but I truly did. I'm not looking for reasons to be offended.  I'm looking to appreciate the goodness in humanity. Even if we disagree. And it was easy for my heart to see the goodness. 
• agencies in our community that support children! Friends of the CJC is an organization that is helping me purchase school supplies and school clothes for kids I work with. We've had some snafus in being able to complete the purchases (issues with the bank and the checks) but I know it will all work out. And the kids will get what they need. So thankful!
• my own growing awareness.  I am becoming more attuned to what it means to live a congruent life, and the importance of doing so. To make my thoughts, feelings and behaviors match. I am thankful for people in my life who model peace, harmony with all, and happiness. 

I am thankful for much more, and may journal it out.... but this here is a blog, and I want to keep it short (ish). 

Thank YOU for the ways you've made our world a better place, just by being you. 

-Sayonara!