Seeking My Normal and Finding Peace With It

Normal, what’s that suppose to look like? I honestly don’t even know anymore. One of the hardest parts of being a transplant patient is the constant changes from good to bad and bad to good. It is such a bumpy life. I was on the island this week with Gavin’s senior boys soccer team. Each day I felt my body getting weaker. It was hard when I thought I was a lot stronger . Today has been much worse. I slept all afternoon. Everything hurts. I feel feverish but don’t have a fever. Headaches have still been bad . I am super thankful that I could be there for Gavin. It was fun watching the boys play. I enjoyed the company that was with me. I was thankful I made it to church this morning. We had a sermon on ,

Ephesians 6: 17 b

and take the helmet of salvation, and the sword of the Spirit, which is the word of God,

Our Pastor talked about things we really want. A new toy for a child , a new cell phone , a new car . We are always excited about getting something shiny and new. The truth is though, these things wear out. They get broken, outdated , worn out and then eventually thrown out or we lose interest in them.

It really struck me how I feel this way about my health and my body. I had cancer and was given an amazing gift of some brand new healthy stem cells. I was excited, overjoyed, thankful just like a shiny new toy. Ok , it is a bit different but it still applies to an extent. However, my body has shown over and over again that it’s still fighting, it breaks, hurts, gets tired and worn out. People start to not come around as much or their support disappears completely ( I am still supported don’t worry) Maybe I’m more like an invisible illness now. I look pretty normal. I have hair again and put on some weight. All looks great on the outside. Truth is , things are still hard. I have had a great couple months. It’s been obvious . My energy was high , I felt great, eating wasn’t a problem other than eating too much. This was all thanks to prednisone. Now I’m going off prednisone and my body is returning to it’s natural state. Right now this will be my normal. Its difficult and I hope that my strength stops declining. I want to be strong. I want to be able to take care of my family and my friends. I need to find peace with this.

Back to the sermon. The sword , the word of God . The bible may get worn and torn on the outside but it will never go away. It’s strength will always be strong and true. We need to use this in our daily living, how we interact with people. We need to share this with people. We need to apply it to our lives. Rely on the truth to get us through adversity. My body may not be the normal I want but it’s where God wants it to be. Maybe this is His way of making me focus more on Him and not my pain . One day my body won’t matter. What will matter is my faith . Once this life is over , the pain and suffering will be gone and I will be in heaven more full of life than ever before. So I encourage you all to open your bibles. Study His word. Find peace in the normal you have right now. I am working on it and will continue to try and find peace in His word . Sick or not , His love and word is the same.

I Love Fall!

There is something so cozy about fall. The leaves and colours that surround us bring me a lot of visual happiness . The smell of comfort food and spicy candles . The warmth of lamps and fireplaces makes everything feel just right. Thanksgiving and turkey , need I say more.

Fall is definitely my favourite season. It’s been hard to enjoy the last 2 we have had because I was sick and recovering from my stem cell transplant . This year I am enjoying God’s beautiful creation from the comfort of my home instead of a hospital room. It’s pretty awesome.

What’s your favourite season and why?

Genesis 8:22

While the earth remains, seedtime and harvest, cold and heat, summer and winter, day and night, shall not cease.”

Words Can Make or Break Your Day

It’s been one of those weeks where I have had to bite my tongue a few times. I haven’t been feeling great ( what’s new) and I guess I have a bit less patience than I normally have. I’m also going down from the prednisone which causes yucky side effects including grumpiness. This will pass though. I know it will because I can get through bigger obstacles than this.

This week I was snappy at my kids, at my husband, quiet at home by myself because sometimes it just feels easier than facing people in public and trying to be happy.

On Monday , I received an email from someone at my doctors office that was incredibly rude and disrespectful. It left me with a feeling like I didn’t matter. I was just another name in the system. All over an appointment time. It took everything and a whole lot of encouragement from my husband not to reply to the email. My reply was all written out and I would have happily sent it. Instead I chose not to.

The thing is , this person doesn’t know me from Adam. She has no clue how her words were hurtful. Her words made me feel like my fight over the last 2 years meant nothing. That me as a mom and wife means nothing. Most importantly, I’m a human being with a soul not just a patient with a number. Here’s the other thing. She could have just been having a bad day. Maybe her dog died or she got in a fender bender on the way to work. Maybe she is abused at home or has mental health issues that are bogging her down. I don’t know. What I do know is words can hurt and words can heal. I probably should have responded in an encouraging way but at the time the best encouragement I could give her was no response.

So my encouragement to you all is to remember that we don’t know what’s going on in someone’s life . People hold things in. Throw a smile on their face and pretend like everything is alright. Make yours words be kind. Remember that words can hurt and sometimes it’s hard to forget those hurtful words. If you know someone is struggling , let your light shine and use words that will heal and brighten their day.

On the flip side, don’t take mean words too personally. You could have just been the persons punching bag in the midst of a hard day. It says in the bible,

Matthew 5:38 -40

You have heard that it was said, β€˜An eye for an eye and a tooth for a tooth.’ But I say to you, Do not resist the one who is evil. But if anyone slaps you on the right cheek, turn to him the other also.And if anyone would sue you and take your tunic, let him have your cloak as well.Β 

In the end I think you and I will feel much more at peace with ourselves and that person if we follow the advice of Jesus.

I’m learning to let things go. I’m a work in progress . I’m not perfect and I know that this has been a really good lesson for me. It takes a lot of work.

MDS Awareness Day Today

Today is my opportunity to spread some awareness on Myeloid Dysplasia Syndrome . Many people have never heard of it as it’s considered more of an “old people disease.” I know how wrong that assumption is because I know many young people who have this.

Mds is often a secondary cancer brought on by previous chemotherapeutic drugs. I was always so thrown off by chemo because it caused cancer. However that isn’t always the case. People who have been exposed to harmful chemicals in their job or their home can get it and some there just isn’t an explanation.

Mds has a very wide range of degrees. You can have and live a healthy life with MDS for years. Doctors will just watch and wait to see how it progresses and then there’s me and many others who get RAEB-2 . That stands for reactive anemia with excessive blasts and I think the 2 makes it the highest severity . There’s also lots of things in between but you can google that if you want.

My symptoms:

-Very early in spring of 2016 I had night sweats . That I couldn’t understand but looking back we know now it’s a symptom.

-I was always tired

-Fatigue hit bad around 2 months before diagnosis.

-Nausea

-Vomiting

-Headache

I had all these things going for me and I had a hard time getting a doctor to listen to me. It took me telling one doc if he didn’t admit me I would die. Good thing he listened because I was right.

Those are only my symptoms. This is my experience.

Since it is awareness day I would like to encourage you to visit blood services website and find out how to be a stem cell transplant donor. Or book an appointment to give blood.

https://www.blood.ca/en/stem-cells

Thanks for reading!

Say Cheese…

I love taking pictures, looking at pictures, being in pictures and sharing pictures. Pictures are great. From the very first day of being sick , I made people take pictures of me. I took pictures of medical equipment, fantastic hospital room views, bruises. I have pictures from my very first bone marrow biopsy and my first chemo. I wanted everything documented. I have bald head photos and photos of my hair on the floor. I have photos with my favourite doctors and nurses. I have family photos from when we thought I wouldn’t survive. Not everyone is comfortable with that and I wasn’t always either. I wanted everything documented so my kids and Aaron would have my story to remember me by. A stage in life no matter the outcome, would have a visible reminder or treasure . That’s why I started blogging. My story is all written out. I don’t remember a lot of it because I was so sick. So I’m thankful that it’s there. I hope to make some sort of photo/ blog book out of it and have it printed.

I wanted to encourage you all to take more photos. Don’t be shy in photos. Enjoy and embrace the you that God made.

2 nights ago I was reminded how precious life is. You see 17 years ago when I was pregnant with Gavin, I joined a mommies group online. This group has been through a lot. 17 years later many of us are still part of the online group. We even have a Marco polo group where we can talk to each other and see each others faces. We’ve been through divorce, marriage, more children, trauma, trials and sickness together, financial problems and so much more. We’ve supported each other through the toughest of times. Well 2 nights ago one of our own at only 40 years old, passed away in her sleep. So far cause of death is not known. Her best friend is also a part of our group and received the devastating call from our friends husband. This has been a hard thing to process for many . It makes you think. Any day could be your day. There was nothing wrong with Melissa. No known sickness that anyone was aware of, She now leaves behind 3 kids and a husband.

The pictures they have will be treasured forever. I know Steph has been posting many pictures of fond memories that they had together and it’s wonderful that she has these keepsakes .

So don’t be shy! Take photos. Take selfies . Invest in family photos. I am so happy that my wall is covered in photos of my family and hope that they will always be cherished. ( Our family photos were taken by http://www.karinlouwerse.com)

Day 7 A Day of Rest

This is the last day I am doing posts everyday. Thanks for joining me as I kick off my new blog. Today my family will go to church. I will be home but will still listen online ( not feeling well at all πŸ™). May your day be filled with joy and peace and rest .

Enjoy your day everyone.

John 16:33

β€œI have told you these things, so that in me you may have peace.Β In this world you will have trouble.Β But take heart! I have overcome the world.”

Keto Diet

As I struggle with my quest to find a weight balance on prednisone, it seems the only way to control the excess weight is through a low glycemic diet. Some of the weight gain is water retention. So reducing sodium is a must . It feels uncomfortable having a swollen face. The tight feeling is not nice. I’m going to venture and try to eat a low glycemic diet which has led me to the ketogenic diet . I’m hoping I can get through the ravenous carb cravings and always wanting to eat. It’s hard to reach for raw veggies because steroids have made my teeth incredibly sensitive to cold. I will try though! Until I’m off the steroids I need something to help. So I hope I can succeed . Do you have any good keto ideas? Let me know ! This doesn’t look easy 😳