10 Lessons I hope my children learn from my disease

My disease has taken from my children. It took me away for almost a year of their lives. As I battled my illness I was not able to be a main caregiver for them.

There were many things I missed out on. Time was taken from us. It has caused them stress. It has made them worry. It has made them sad.

The negative impacts are obvious. But what about the ways it can positively affect them? I set an intention a long time ago to find the good during my difficult times. To focus on the good instead of the bad.

They must be able to learn lessons from the rough patches, right? Isn’t that how we build character?

So I set another intention….to help my kids learn from all we are going through. Here’s the lessons I will try to teach them…

Winter blues? 12 ways to boost your mood!

Winter blues got you down? I feel you. I don’t like to be cold. But I live in Canada so it’s kind of inevitable.

It happens every winter. At some point I just feel blah. It becomes a little harder to wrap my head around my illness and to focus on the all the wonderful things I’m grateful for.

So I did what comes naturally to me when faced with a problem….I read. I read and learn about whatever issue I’m facing.

Apparently two of the main ways to beat the winter blues are exercise and getting outside. Which I can do now, but there was a point during treatment where that was not easy for me.

So what if that’s not possible? What if you suffer from a chronic illness or are facing a health crisis like cancer? Exercise and going outside are not always easy tasks. So here are some other ways to help boost your mood when you’re in a winter funk.

Mackenzie’s Mission: The Voices of Amyloidosis

Mackenzie was diagnosed with Amyloidosis when she was only 23 years old. After receiving an autologous stem cell transplant at the Mayo Clinic in Rochester, MN she is now in complete remission!

Mackenzie’s Mission was founded to help spread awareness of this disease and to raise funds for research. In 2018, the first ever Play FORE the Cure golf tournament, plus donations throughout the year, raised over $164,000!

Through their website,  Facebook page, and YouTube channel, Mackenzie’s Mission continues to create informative posts and videos to spread the word about Amyloidosis.

Chronically Ill Parenting: 25 Tips from real life moms

Parenting is hard. When you’re chronically ill it throws even more complications into the mix. I recently spoke with some chronic moms about what it’s like to parent when you’re sick. The consensus: It’s tough!

But….think about all the good you can teach your child. You have a unique perspective and can be a real life role model. You can teach them how to overcome! How to be resilient, how to make the best of what life throws at them. You can teach them to be strong and independent. You can teach them that life isn’t always fair but that you can make the best of it. You can be a source of inspiration and of unconditional love.

Self Care for the chronically Ill : 10 Tips

I recently asked for help. Help from other chronically ill moms on how to handle this whole sick parenting thing.  How can I take care of my kids on the days I can barely take care of myself? I got a lot of wonderful suggestions and feedback.  Here are some tips from some real life sick moms on how to manage your self care so you can care for those kiddos too!

Faces of Amyloidosis

Thank you so much to Mackenzie’s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial because it leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the ‘amyloid profile’. Amyloidosis does not discriminate.

Here are….The Faces of Amyloidosis

Journey to Conquer Cancer

This Sunday, June 17 2018 my husband and I will join the Journey to Conquer Cancer 5 km walk in support of Princess Margaret Cancer Centre.

Over the two years I have spent at Princess Margaret I have been met with nothing but kindness and compassion. The dedication and hard work of the staff has saved my life. Ground breaking research is being done here every day.

Please help support us if you can and donate here

Thank you!

Let’s Chat!

Over the past few weeks I have had people reach out to me who have either just received a diagnosis of Amyloidosis, or who are in the process of being tested. Each of these people has expressed that they hesitated to contact me. Please don’t hesitate to contact me!

The End Of NEOD001

I must say I was completely shocked when I heard of the end of the trial for NEO. Others I have talked to (people definitely more knowledgeable than I in the field of amyloids) had a feeling it was coming. I was convinced that this antibody was going to do wonders for the field of AL Amyloidosis. I was convinced that it was doing wonders for me! (I feel like maybe it did still help me even if they didn’t get the numbers they needed).

CyborD and Me

When I first heard that I was going to have chemotherapy I pictured one drug, one very strong drug that was used to treat cancer. I envisioned myself bald and extremely sick with side effects. I was quick to learn that this was not the case for me. As I have come to understand it, chemotherapy is a broad term used to describe a variety of treatments and generally involves a combination of medications. (I’m certainly no doctor and a lot of the medical jargon confuses me, but I’m trying to learn as I go!)