Dont tell me what to do

Working on you, when you are ready

I refuse to be called a millennial and in the grand scheme of things I dont think Im that stubborn. But I have noticed a trend in my life: that I can only do things when I am ready. For instance, when I was 12 years old my father brought home a copy of The Wealthy Barber. To this day this book continues to be recognized for its illustrated wisdom of teaching thousands of people how to save and invest their money. Dad had just started to learn about this at a greater scale and thought it would be fun to teach me how to grow my money at a young age. Surely if I had listened and followed back then I would be fairly wealthy. But it was the LAST thing on earth I wanted to be learning or practicing. We continue to laugh about this today as Dad makes every attempt to teach my younger cousins and now my nephew – any last ditched effort to get the young ones to invest. At the age of 35 I would commend myself for how money smart I am, but only because NOW I have an interest.

Over the last month I have been in a dark place. My diaphragmatic endo took over my life, putting me into the hospital three times in one month. I have been nothing shy of spoiled with love by my social media family as well as my real family and friends. Each one has taken a vested interest in finding me comfort but up til now, I wasnt really ready to think about how to reset my life. I was more focused on being angry. I have slept more in the last month than I did in my teenage years. My boyfriend and my mother have taken turns flying across the country to take care of me. And while little victories (healthy blood work, no diagnosis of something fatal, etc) make them exceedingly happy all I can think about is the pain and how angry it is making me. One afternoon mom suggested – after reading some rather basic endometriosis blog articles – that I should incorporate deep breathing exercises into my daily routine. What did I do? I tore her a new one. “I dont need you to read blogs I already read 20 years ago, telling me to do things I already know. I need you to find me a specialist”. She knew I was angry. She rested my head in her lap and let me cry and cry and cry. I knew yelling at her wasnt fair. And while everything she said was correct, I wasnt ready.

The remedy for my sanity was to fly back home for a while. I live in Vancouver but Ottawa is where my soul is. I had a flight booked already, so nothing in the world was going to stop me from getting on that plane. For two weeks, while I was at home I took some much needed time to listen to my body, listen to my surroundings, and start to take in cues. The first thing I did was breathe. Yes, exactly what mom had told me to do, but this time I was ready. Lets be honest, breathing doesnt really help when you have diaphragmatic endo because it hurts like hell. So instead, I do breathing exercises  1) to understand my limitations and 2) to build the muscles around my diaphragm SO THAT if and when I get a collapsed lung I will be in the best shape that I can be. Its not much, and again, it doesnt create miracles, but its something. On the daily I try to do 5 long, deep breathes, roughly twice a day.

In addition to my deep breathing, I am also finally ready to make some other positive changes.

  1. Eating greener – Note that with my Ulcerative Colitis I started out on a low residue diet for nearly 4 months and then started to bring in root veggies which are healthy and low in fiber. I maintained this diet for another 4 months which has brought me to a very stable state (ie no sign of inflammation or irritation in my colon alongside Entyvio infusions). My body is finally ready to take the next step. On the advice of a social media friend I am slowly starting to bring healthier food back into my diet. She provided me with a suggestion to start with a handful of leafy greens per day, and wait a full 24 hours to see if it sits well. Mission accomplished! Now I am incorporating a handful of leafy greens into every meal. Once I am confident that this will not cause I flare, I am going to start replacing some rice with Bulgar, and then start to slowing bring in new veggies; keeping a diary along the way.
  2. Being liable (Myfitnesspal) – Ok so I am horrible for apps. I utterly detest the apps that require me to input my meals simply because they need the data, and I get nothing in return other than some simple graphs. But I also admit I have never understood calories except for the brief year in highschool when I was gaining weight from the pill and decided to starve myself. That was a good lesson on how not to obtain calories. But in all seriousness while I am trying to reduce pain, stay healthy and be whoever it is I am supposed to be, I am basing it on no metrics whatsoever. I decided to download myfitness pal. Yup, I definitely have to input my meals but it tells me when I am eating something good or bad, it gives me goals to achieve and shows me how much impact a little walk can make. If nothing else, it is making me very aware.
  3. Forgiving –  I am learning to forgive people for telling me how they think I should live my life. I am forgiving people for not taking me seriously before. I am forgiving the world for giving me two autoimmune diseases. I am forgiving my body for being flawed. I am forgiving my soul for taking times to cry. I am forgiving my dog for passing away when I needed her the most. I am forgiving my colon for being sensitive. I am forgiving my body for being too strong; and at times for being too weak. I am forgiving people who love me the wrong way. I am forgiving the medical industry for not pouring more money into endometriosis research. I am forgiving healthier people for thinking there is a diet that will cure ulcerative colitis. I am forgiving.

My new sistas!

The Support Network of Spoonies

It has been 23 days of constant (chronic pain) and sadly I dont see a light at the end of the tunnel yet. I am trying my very best to live, and breathe and be positive but some days are better than others. To say the least I have been spoiled by my friends and family and I admit they have seen some of the best and worst of me lately.

Two days ago my mother kept coming into my room (she flew across the country to take care of me) to show me new blogs she has come across reporting on ‘ways to cope with endo’. We still think its thoracic endometriosis so she has gone full fledged google monster. While I should have been thinking ‘wow look at her taking an interest finally’, my brain went straight to anger mode. I said to her ‘these are things I have known for 20 years. Find me a doctor who can remove this from me, thats how you can help’. Yeah I literally said those things. I love her to death and dont know what I would do without her but sometimes – especially in these moments of frustration and exhaustion – I get mad at the band wagon jumpers who assume I havent googled everything from here to Mars.

Needless to say while I did apologise, Ive found that the best way to keep me positive is by reaching out to the community of spoonies that just ‘get me’. I recently, before experiencing this marathon pain, rebranded myself and started reaching out to others who have both colitis and endometriosis. In such a short period of time I have made friends over instagram and twitter, along with a fantastic support system on several facebook groups.

My way of helping you, while thanking them, is to introduce you to some of my new friends.

Meet Erin, aka The Herbivore Kitchen. She is a local to me – right here in Vancouver, BC. I started following Erin on instagram and fell in love with her meal ideas. When I found out she was local, we quickly started chatting over email and hopefully will meet in person one of these days. She has inspiring endo-friendly meals but has given me inspiring words through her email hugs.

Meet @mycolonaintcute on Intagram; A Welsh Londoner who has held my hand through some big ups and downs lately just by being there for me. Her meal ideas are fantastic for both flare and non-flare times. And most of all she has a great sense of humour.

Meet @lowfodmapchatherine who is a recent friend but is helping me – with her words and her delicious low fodmap menu ideas, how to turn my colitis diet into a healthy one. Check out her instagram when you get a chance.

Meet The Heatpad Queen, a beautiful soul showing the most gruellingly honest parts of having endometriosis and other autoimmune diseases. She has created a wonderful network on instagram and through her blog.

Meet @one_spoon_at_a_time_ another beautiful soul on Instagram who is battling motherhood with Crohn’s Disease. Beware her pictures are absolutely stunning. And best of all she’s another local here to BC.

Meet @mygreencolitis who has been capturing her own going green pictorial journal as a way keep motivated. Meanwhile she has been holding my hand, both in the journey of eating well with colitis, but in finding my way. If you are a UC patient looking to go green, this Instagram will totally motivate you.

I thank all of you for being a part of this journey from far and wide.