Saturday, August 30, 2014

Remicade Challenge

During last week's Remicade infusion, I pondered.

I pondered upon how I've been coming to the same hospital, for Remicade, for almost four years. The flares, and why they keep recurring. My lack of remission. How lonely it feels to be in the hospital without any visitors. How I wish there was a cure, so I could be medication-free. Or, even just being medication free AND in remission - even for a little while.

I pondered upon what would make this time during and between infusions meaningful, fun, and be a gentle distraction. I can't change my chronic illness, but at least I can change my perspective. And hopefully alleviate some of the negative associations I've developed.

I was bummed that I couldn't bike to my appointment as I am a fatigued mess afterwards. Not a good idea to cycle when you want to nap and can barely keeps one's eyes open. I do, however, take the hospital stairs. It gives me some activity in an otherwise very lazy day.


I was inspired to create a challenge, for myself, that is meaningful between Remicade infusions. Right now I am inspired to become a more active person. I used to enjoy being a gym-goer, cycling, swimming, even the dreaded jogging. However, after my flare in the fall, my motivation has nose dived. I've felt significantly better when I am moving more, so hopefully giving myself this fun challenge (and blogging about it!) will keep me accountable.

Out for a walk!

Also, I considered the many benefits to increased physical activity. It improves symptoms of mild-moderate anxiety and depression, is important in bowel health as it increases peristalsis and blood circulation to the gut, assists in maintaining a healthy weight, and is important to so many functions in the body (ie cardiovascular function, musculoskeletal health).

Week one was a success. I did something a little active every day. On Remicade infusion day, I went out for a short walk after a long nap. It was short-lived due to my fatigue... but I had a great sleep afterwards!

Most of my activity has been spent going for walks and biking. I have to take advantage to the last few "nice" summer days we have left, as the evening chill is strongly indicating that fall is near.

Not that cold weather has stopped me before, but it is easier to cycle on pavement than through snow and ice.

If it's not obvious, I'm a winter baby. I love snow and cold weather.

Soon I'll be looking for studded winter tires for my bike. Yes, I intend on biking in the winter. I'm badass like that - cycling on ice roads and all.

Speaking of badass, check out the softball jersey's for the team I play for. We're in D division, so.... beer league!

While we're out of the finals, Walter White has faith we'll kick ass next year!

I'm about to head out to see if I still have the stamina for (UGH) jogging. Wish me luck.

Does anyone else feel "stuck" in their motivation during a flare or feel down around Remicade time? Do share, and feel free to join me in my Remicade Challenge!! I can use all of the motivation and support I can get!

Friday, August 22, 2014

Remicade Day, yet again!

Guess what day it is?!

It's that fantastical time, every eight weeks, where I am pumped full of medicinal-grade rat proteins that allow me to have a proper quality of life. As in, I'm not constantly nauseated, losing significant weight unintentionally, in the fetal position from severe abdominal pain, and/or spending the majority of my day ensuring I am near toilet facilities.

(Yes, it really does contain rat protein).

My trusted IV pump and myself.

Ah, Remicade.

Another early morning to attend this appointment, due to my previous reactions and necessity for "pre meds" now. Although, I am glad I am no longer going to receive IV Gravol considering my less than pleasant experience with it previously. I'm quite happily taking my Cetirizine daily, five days before and seven days after my infusion. No side effects as of yet.

Due to this early morning appointment, I went into work early to ensure all pertinent documents, etc were attended to. Which means I was awake at 0645. 

A morning person, I am not.

I prepared some quinoa flakes with raisins and coconut sugar to take to work for a quick breakfast. Then I packed my snacks for the day:

POM juice, organic blueberries, bananas, and plenty of tea.

First step on Remicade day: Pokey.

My usual nurse was off work today. I think she has the magic touch for IV. I hope she's back in eight weeks!

Second step: Vital signs. And... um.... educational reading.

After my foggy brain last infusion, I felt some gentle reading was appropriate:

Step three: Remicade time!

Step four: Waiting...

Time for reading, snacks, and tea!

After my infusion, it was noted that my Thyroid Stimulating Hormone (TSH) that was to be collected with this month's lab-work. Which means... I have to get blood-work. Again.

Le sigh.

So I had to register a second time, wait, and get poked with another needle. Yay?

OUCH x 2.

After such an early morning, two needles, and post-Remicade fatigue and headaches... it's time for a much needed nap. More tomorrow on a new undertaking I am considering... that I pondered upon during today's Remicade treatment!

Tuesday, August 19, 2014

Eat The Rainbow

Today was a rainy, grey day. 

Not that I am complaining whatsoever. I love rain - the cool crisp air, the smell of rain, jumping in puddles. Plus, with all of the wildfires we were LONG overdue for some rain to calm the smoke down.

It was beautiful on Sunday, however. I did enjoy some time strolling around Prosperous Lake with a very cute someone...

Look at that face!!

Awwww Mocha *love*

- - -

I've been very fortunate that my Mom, Aunty, and friends have been sharing their fresh summer produce with me. I have a crisper full of kale, beets, beans, raspberries, potatoes, lettuce, carrots...

There is a general recommendation to eat a variety of foods in various colors. This is because differently colored natural foods house different phytonutrients, carotenoids, and antioxidants. This is essential in ensuring optimal healthy and slowing aging. 
I try my best to have this variety, but I admit I am not always perfect. Especially during the winter months, when seasonal fresh produce is limited.

Each color has their own potent (and delicious) benefit:

Red: Tons of phytochemicals such as lycopene, anthocyanins,  Vitamin D, folate. These have significant roles in prostate health and cardiovascular health. 
My favorite sources: Cherries, beets, tomatoes, strawberries, raspberries.

Yellow/Orange: Very high in antioxidants! Full of beta-carotene, beta-cryptoxanthin, alpha-carotene, and vitamin A+D. They are excellent for eyesight, immune function, bone health, healthy skin, and the heart. 
My favorite sources: Carrots, yellow bell peppers, oranges, sweet potatoes, mangos, cantaloupe.

Green: This is the most common color I incorporate into my sources of produce. LOTS of delicious chlorophyll! Which is fantastic, as greens are full of phytonutrients, minerals, and tons of nutrition! There is lutein, calcium, iron, Vitamin K, folate, glutathione, indoles, and sulforaphane. All helpful in detoxifying the liver, keeping a healthy blood pressure, keeps skin and bones healthy, and has some anticancer properties.
My favorite sources: Kale, spinach, beet greens, spirulina, broccoli, brussels sprouts, avocados, celery, cucumbers, green apples ...

Blue/Purple: My second favorite color - always something blue or purple in my morning smoothies! These rich colors are full of anti-aging and antioxidant nutrients. This includes anthocyanins, Vitamin C+E+K, and many other fantastic antioxidants. The richer and darker the color - the more health benefits! It is great for your  immune system, circulation, skin, heart health, urinary tract health, brain function, improved cholesterol, and anti-cancer properties.
My favorite sources: Blueberries, blackberries, raisins, plums, pomegranates.

White: This does not mean processed white foods - think fruits and vegetables! White produce has anti-microbial properties (due to it's sulfur content), flavenoids, vitamin C, and manganese. They are also great for your immune system, heart health, cellular recovery, and has anti-cancer properties.
My favorite sources: Mushrooms, garlic, onions.

My example of a colorful food day. First stop: Breakfast.

A green smoothie. It's full of spinach, blueberries, strawberries, spirulina, banana, coconut water, and Vega protein powder!

Hydration is also very important. So, I have been drinking lots of water with mint and cucumber. Flavored water is more enticing and delicious to drink - and the new jug makes it visually more appealing!

Lunch was some leftover Borscht that my Mom had prepared. The Ukrainian part of me is very pleased! I had to wear a makeshift bib to prevent myself from getting red beet broth all over my work clothes!
I threw in some organic black beans to increase the protein and fiber quotient.

So delicious. It went well with some organic raspberries.

I snacked on a Taste of Nature bar throughout the day. It's easy to pack during a busy shift, and even eating half a bar in the morning and the afternoon can sustain me. Oh, and it's organic, gluten-free, and vegan. Canadian, too!
I chose the Quebec Cherry Carnival, which was full of dried cranberries, pumpkin seeds, sesame seeds.

These are so delicious. I can't wait to try more flavors!

After a wee walk, a delicious dinner:

Panfried trout with fresh sage, basil, and thyme. Sauteed beet greens with  garlic.

Delicious side of sweet potato fries - mildly burnt. Oops.

More delicious than just processed white and beige food. Significantly healthier as well!

Tell me, how much of the rainbow do you devour in a regular day?

Saturday, August 2, 2014

Catching Up

I have been feeling ... off.

My Remicade dose was doubled for my previous doses in reaction to my continued inability to achieve remission. I didn't consider that this would be much of an issue, and the pre-meds were going to presumably make the process better. However, my experience with the pre-meds was less than delightful.

Over the last two months, I've been noticing an increase in hair loss, worsening fatigue, nausea, hip pain, and general malaise. I tried improving my diet, going for walks/bike rides more frequently, and practicing good sleep hygiene. None of that seemed to make a lick of difference. Luckily, I had a pending appointment with my GI so I knew I could review my concerns at that time.

The appointment was fairly lackluster.
My dose of Remicade was going to slowly taper down to regular dosing, pending that my symptoms don't worsen. That, and a TSH (Thyroid Stimulating Hormone) would be added to my next labwork to assess if I have a component of hypothyroidism contributing to my symptoms. I also tried to discuss the use of VSL#3 high-potency probiotic as it was suggested to be previously by another GI physician, but I was meet with a disinterested reply - that it may or may not work, Remicade is the main basis of my disease management. Great.
I have been very inconsistent with taking my Imuran, as I found I was getting more infections when I was taking this medication. As well, Imuran has a slight increase in the risk of developting Hepatosplenic T-Cell Lymphoma. I have been off it for several months. I was reminded of the use of Imuran to prevent the development of antibodies to Remicade; thus increasing it's effectiveness for a longer period. So back on the Imuran I go.
I also need a Bone Mineral Density, a consideration for my hip pain and long history of prednisone use, which can be associated with early onset of osteoporosis. Fun.

Life goes on, however.

I was volunteering for Folk on the Rocks, a local folk festival that is full of music, food, sand, and sunshine. I was volunteering at the beer gardens, keeping the hooligans at bay and making sure everyone is having a good time!

I was fortunate to be volunteering with some good friends, who don't mind getting a little dirty in the sand!

Our Volunteer Shirts!
My little friend Sarah! Isn't she cute?!

Although I wanted to dance in the sand all night, after volunteering and being in the sun all day I went home earlier for a shower, food, and sleep. 
My feet were filthy!

The Zing! booth was also there, so I was able to indulge in vegan and gluten-free foods. I had about two blueberry smoothies and black bean brownies each day. They were DELICIOUS!!

I also went one evening to check out Theater on the Lake, in which a stage is quite literally on the lake. My brother wrote and directed a play, which was fantastic. There were also some clowns from Argentina that were ... bizarre. 

I have also been spending time with Mocha and my Dad, going fishing on calm nights. Unfortunately, lots of bites but no fish!

 Awwww look at that face! She's such a cutie!

This last week has been very lazy, due to worsening of my fatigue, malaise, and sleep issues. I am hoping that, with time, this will improve. I have my next Remicade infusion in a few weeks, so I'm hoping for the best.

In the meantime: Lots of sleep, nutritious food, and being kind to myself.