No apologies

Today I rested for four hours after getting up to see if I could go outdoors today and enjoy the sun. I didn’t eat. I just rested.

Around 1pm I felt up to a walk so my puppy and I went to a local short trail, a place I knew would not be busy and was close enough to home that I could leave if my tummy failed me.

I walked my puppy on the trail. I sat and watched the waves roll in from our beautiful Atlantic Ocean. I took pictures. I shared on social media.

After my walk, I visited a friend. Of note, we practiced social distancing and were brief and safe. It felt good to visit, even within our current restrictions.

I also did a lot of driving to achieve these two activities. I plan to go out again tonight. I have just eaten and need to monitor the situation but I’m hopeful.

I am in the midst of a flare-up. I am off work. I spend most days resting. Many days I can’t trust my body to walk. I have days of terrible pain. But today, after planning, resting and not eating I was able to be active and a bit social.

I will not apologize for sharing these good days with the world. They are precious. They are few. They do not mean I’m better. They do not take away the bad days. But they are unapologetically amazing.

Joy

Here are some pictures of better days to remind us that we live on a beautiful planet with so much to love. Many of these pictures were taken while sitting or standing with groups of people. In time, those activities can resume. There is so much to look forward to. I hope you enjoy!

A boat arriving home in St. John’s Harbour.

A wild rabbit.
Manuel’s river trail
Collecting sprinklebacks in a bucket on a warm summers evening
A view from Aaron’s arm trail

Sunset over Octagon pond
Attending a National synchronized skating competition with family and friends.
Mama and her ducklings!
Halloween adventures!
The Great Lakes
Campfires
A baby sloth!
Meeting Olympians!
The joys of walking a deserted beach and finding a beautiful seal just relaxin’!
The pride of salvaging fallen trees for firewood.
Fundraising and walking for a good cause! Gutsy walk for Crohn’s and colitis.
Geocaching with friends who support you during a rough time
Baby robins in your backyard
Exploring the world by plane
Going to Broadway!
Exploring by bicycle
Attending a wedding right in the middle of the forest on a river
Poutine everyday anyday
Watching the fishing boats come in
Fresh clothes on a line
Floating down the Humber river
Swimming and flexibility
Hiking with Duke of Edinburgh
Time in the cabin
Exploring the world by Ferry
Enjoying the Cabot trail.
Christmas dinner
Pet photo shoots
Baking and sharing with neighbours

Stay safe everyone! I can’t wait for our next adventures.

Today

I did it! I went out, to the clinic, and you know what? Everyone seems to be behaving within the guidelines and I felt relatively safe.

The clinic and I came up with a plan for home-based injections to reduce social contact. I did my injection today with the nurse and future injections will be delivered to my home for self-injection. Blood work could not be done as urgent bloodwork only is approved in our province right now.

The nurse was lovely. She asked all the right questions and all staff were practicing social distancing and hand hygiene. I was listened to and cared for, despite the chaos we live in right now. The clinic wasn’t as busy with patients because they are staggering appointments to promote social distancing.

Once home I had a big nap and then enjoyed supper and family time, especially pet cuddles.

All in all, today was a good day despite the disease being very active and wearing me down.

It’s a lesson to me. To not worry until worry comes. My dad and my mom taught me that and it’s truer than ever today.

Stay safe and take care.

Yesterday

Yesterday I worried….

Yesterday I dreaded for tomorrow, but tomorrow is here and it isn’t so bad.

Yesterday I went for a drive alone late at night. There was no traffic. I drove to a local historic site and gazed upon it. The Christmas star is lit again for all to see, as a symbol of solidarity and unity as we take on this invisible threat.

I looked upon a city, sleeping. A city with less activity. A quiet and disconcerting sight.

Yesterday, my chore for today was overwhelming. Today, I woke up early due to racing thoughts about going out to the clinic. But I came to realize, I can only do what is within my control to do. Our local public health emergency will hopefully reduce my risk, I will wash my hands and practice social distancing. I am sure the nurses will as well.

Yesterday, today was a dream. Today, yesterday’s fears are simmering under the surface. I know I can do this. My partner goes to work every day at a hospital. He is considered an essential worker. I can go to one appointment.

My immunosuppression doesn’t mean I’m at higher risk to catch it, it means if I catch it I will not be able to fight as hard as others to beat it. So, I’ll follow recommendations from the experts and do my best to lower my risk of getting it.

Ok, it’s show time. Yesterday is gone, tomorrow is now today. I will be okay.

Stay safe out there.

Tomorrow

Tomorrow I have a chore to do.

I do not want to do it.

But it is a life and death chore.

A chore which cannot be delayed, postponed, or ignored like the dishes.

And this chore has suddenly become more terrifying.

What is this chore? I have to get my Stellara injection at the clinic and I have to get bloodwork.

Why is this terrifying? Many reasons including but not limited to:

1- I need this medication for my chronic health condition so I have no choice but to go.

2- This medication is an immunosuppressant so my immune system will be kicked to the curb, so to speak, directly after treatment.

3- The chore requires me to go out in public. I have to drive into the city, go into a clinic, see other people, touch other people, breathe other people’s air.

4- Due to the recent worsening of symptoms, my specialist has doubled my treatment. Now I will get this injection every four weeks instead of every eight weeks. This means more travel out of my house, more social contact, and more immunosuppression.

Prior to the global pandemic I would dislike treatment day. I didn’t like it interrupting my work day. I didn’t like the pain of the medications and weakness thereafter. I feel silly about that now. I wish I could go back. Because now I don’t dislike treatment day, now I am scared to death of treatment day.

Tomorrow is going to be a big day filled with risks. Risks I have no choice but to take.

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If you can stay home, please stay home. There are many people like me who need life saving medications and have to venture out to clinics. The less people we see, the less chance we get the virus. If we get the virus, our chances of fighting it are low. We are at highest risk during this pandemic due to weakened immune systems. Thank you.

Rainbows

Rainbows are a sign of hope, love, and equality. They are the beauty in the midst of a rainy day. They are the symbol for diversity, pride, and peace. They show us that something good can come after something bad.

During this pandemic many ideas are popping up all over the world to help us come together as humans, as a global community, while also staying physically apart. One idea my family and I have really latched onto is regarding rainbows.

I found a post online suggesting local neighbourhoods put rainbows in their windows for families to seek out during walks and drives. Due to isolation, and social distancing, children are home without their friends. Parents are also missing friends, family and socializing. This is a fun and easy way to bring communities together despite being apart. The goal? Count as many rainbows as you can find on your walk or drive either alone or with your children/families. See who finds them first. Make it a little friendly competition. Capture them on your phone and share on social media. And also feel reminded that the homes with rainbows are standing with you, that while physically alone you are emotionally bonded with others.

As a person who is home and immunosuppressed, and as such one of the more vulnerable members of the world right now, I feel that anything that can help alleviate the feelings isolation, promote social distancing, and support my own family in fun and engaging activities is worth its weight in gold. And we know what we may find at the end of a rainbow 🤩.

So my family all chipped in and we made a big rainbow. Hubbie drew it, I measured, my daughter held it tight. My daughter and I made the colours and painted. My hubbie hung it in the window and added holiday lights.

I would love this trend, and other trends like it, to spread quicker than the virus.

Kindness and love, unity during separation, hope and equality, beauty after a storm, all of this and much more is what our rainbow stands for. I’d love to see you stand with me.

Stay safe everyone. 🌈

A laugh for you

Let me start by saying, this last 24 hours have probably been the worse of my recent flare, with 10/10 pain, vomiting, specialist consult and treatment changes. I’m ok right now and looking forward to seeing improvements with a new plan. It’s a scary time to be an urgent surgical case… so I think I need a laugh. This is one of my most embarrassing moments. While totally unrelated to Crohn’s disease, I hope this makes you giggle as much as I giggled writing it.

I think we all have those funny stories in our lives that never get old. Let me set the scene. I am sitting with my partner and child in a fancy restaurant for brunch at a hotel in the capital city. It is summer, we are wearing shorts and tanks.

As we finish up, I stand first. I feel something on my feet. I look down. My shorts are around my ankles and I am standing in the middle of the restaurant in my underwear.

Oh. No.

I see the waiter just behind me as I rush to bend over and pull up my shorts. The few seconds it took to bend over to pull up my shorts WHILE IN MY UNDIES IN PUBLIC felt like an eternity. I say loudly to my family, so others can hear, ‘I’m so glad I had my swimsuit on inside my shorts!!!’ We all know I wasn’t wearing a swim suit, Hahaha.

We quickly left the restaurant and didn’t look back. Laughing as we walked/ran.