Spotlight on Long QT for Rare Diseases Day

Hi there! Welcome to my blog. Maybe you know already, but for those who don’t, today is Rare Diseases Day. Our family knows all about one rare disease in particular: Long QT syndrome. Long QT (LQT) has to do with the electrics of the heart.

Now, the fact that we know all about LQT is both good and bad. It is unfortunate that this genetic condition runs in my family. Honestly, I wish it didn’t. But it is also quite a good thing that we now know about this condition and how to treat it. Knowledge is power, and I feel it is so much better to know about and manage our condition so that we can live our lives fully.

What does QT stand for? The ‘Q’ and ‘T’ are waves from an ECG reading. The distance between the start of the Q wave and the end of the T wave (Q-T interval) corresponds to the time it takes for the heart to contract and refill with blood, before beginning the next contraction. A prolonged QT interval means that the length of time is beyond the normal amount of time. Although usually caused by a genetic factor, LQT may be acquired by certain medications or medical conditions.

LQT arrhythmias can result in syncope (loss of consciousness), seizures, and potentially, cardiac arrest. There are many medications that prolong the QT interval, and those should be avoided by LQT patients. There is a fantastic resource for us which easily helps to determine if a drug is safe to take or not. It is called Credible Meds and is free, easy to register for, and is an app you can have on your phone.

The great news is that Long QT is treatable.

I think there are a lot of things to be grateful for over this past year of the pandemic. One thing that I am thankful for is the SADS Foundation weekly Facebook live sessions with Dr. Michael Ackerman. Dr. Ackerman is an established and respected expert in the field, and every Friday night (7:20 PM Irish time, 2:20 PM EST) for 40 minutes he talks about genetic heart conditions like Long QT. He is often joined by other world class experts, talking about our conditions, covid, genetics, and generally answering our many questions. Having such easy access to so much relevant information from the most respected in the field is simply priceless. The main takeaway, which is quite positive, is that we can all manage our conditions and live full lives. That will certainly look differently for different people, but it is possible for everyone. Knowledge is key, as is treatment.

We found it immensely helpful to be involved with support groups, especially in the beginning when we were first diagnosed. The Irish Heart Foundation had a wonderful program for families at that time, which brought them together in the fun atmosphere of Barretstown (a camp set up specifically for kids with illnesses). We were able to forget those initial worries and all of the unknowns and be with other families who were going through similar experiences as well as families who’d already been through this stage and had practical advice to share with us.

My purpose of this post today is to spread the word about Long QT syndrome. Not enough people know about it, or know what to do when they see someone ‘faint’ (a typical symptom) or worse still, go into cardiac arrest. Have you taken a CPR course lately? Maybe it’s time for a refresh or to take it for the first time. You never know, you just might save a life. If you feel so inclined, it would be a great time to reach out and help your local heart organizations. They help to get people trained in CPR, which ultimately helps all of us. I just learned of a wonderful program in the US where they teach age appropriate CPR to elementary school aged children. They repeat the program every year, so that by the time the kids leave elementary school, they know CPR without even thinking. What a great way to keep the community safe!

It has truly been quite a journey, and we are still learning, but I’m hopeful for our future.

Stay safe and well!

In Peace,
Dana

This beautiful picture hangs in the kitchen for parents of patients in the cardiology ward at Crumlin Children’s hospital, in Dublin. I know this from the times we’ve been there for our Long QT. The Irish says ‘In my heart forever’.

A collage of pictures from the fun the kids had at the Barretstown weekend with other families with hereditary heart conditions.

The grounds are lovely at Barretstown, with a sweet park to stroll. This tree, fairy door and sign were my favorite.

A happy moment in time, captured with the snap of a picture. Barretstown weekend.

Thank you for stopping by. 🙂

Seizing the moment this Valentine’s weekend

Hi there! Welcome to my blog. Life is still pretty crazy, and the news isn’t really getting much better, but something wonderful happened this weekend. I just let every worry go and went outside and had some silly fun with my girls! It was freezing, it was wet, it was snowy, but most of all it was just what I needed.

When I mention ‘my girls’, I’m usually referring to my chickens, but this time I actually mean my daughters. They are 16 and 20 and they are really a delight. This lock down can’t be easy for any of us, and they are holding up so well. I’m glad we had the opportunity to get out and have a bit of fun.

Our area is not really known for snow. Admittedly, we’ve had a few dustings this winter, and it has definitely been colder than usual. But for whatever reason, the snow this weekend had all three of us going outside and having a bit of fun. We were out long enough to make a snowman and take some pictures, which was the perfect amount of time! Our snowman was the laying down variety, since the snow was too heavy for us to lift the body (it was really, really wet!). By the time we rolled the three parts, most of the snow had been rolled up!

I’m so glad we did it. I was tempted to stay inside and just watch them from the window (I don’t like the cold!). It was so worth being with them and a part of their silliness. I probably need to do that a little more often!

I hope you’ve had the chance to be silly, too! I think it is good for all of us.

Take care!

In Peace,
Dana

Mom in the garden and her daughters playing in the snow

I’m so glad the girls aren’t ‘too old’ for having fun in the snow! (You can see the grass showing after we rolled the snowman!) Everything was green again the next day – washed away with the rain.

Playhouse in snow February

We’ve had more snowfall this year than usual. We’ve had a long stretch of rainy, cold, or snowy weather!

collage anemone, hellebores, snowdrops

The sun managed to visit us just today! It was lovely to get some pictures of the flowers currently blooming! (clockwise from top left: Hellebore (unknown variety), anemone, snowdrops, Winter Sunshine hellebore)

Hellebore Winter Sunshine February 14 closeup
hellebore Winter Sunshine

The Winter Sunshine hellebore is really starting to come into full bloom. There are so many flowers! It never disappoints.

Hellebore dark pink
Hellebore full plant dark pink

This dark pink hellebore plant is also starting to come along. I have hellebores at different stages, and this one is not as far along as the Winter Sunshine. You can actually see the Winter Sunshine hellebore in the top right hand corner of the above picture.

Snowdrops February 14 full sun and open
snowdrops collage

These snowdrops have never looked as ‘happy’ as they do this year! I especially like the green markings. They are so dainty, and when they are fully open they look like miniature lampshades. These were a gift from a friend’s garden, years ago, and have been divided at least once. But this group here is the showiest.

Anemone purple February 14

Last but not least, we have this anemone, which isn’t a Mr. Fokker, like the rest in my garden. So I’m unsure what it is. I found the color to be quite pretty, though.

blue sky snow fall playhouse

We did have one blue sky day this week, and it was just beautiful. I’m so thankful for days like this, which really lift my spirits!

chocolate heart cookie

I hope you’ve had a wonderful Valentine’s weekend, and have been made to feel special! Thank you for visiting, and do take care! 🙂

The good, the bad and the ugly: 2020

Hi there! I think there is just enough time to squeeze in one last blog post in 2020. I want to keep this short and sweet – it is New Year’s Eve, already. 🙂 No one needs reminding that 2020 was pretty tough for most folks. My heart breaks for the loneliness and despair caused by isolation from stay at home requirements. That doesn’t even touch on the tragedy of how many people have passed away due to Covid-19, or the financial hardships felt by so many. But I do think that due to the situation around Covid-19, many people began to focus on the art of gratitude. We all learned how to appreciate the little things that we’d probably taken for granted prior to this year. It also became abundantly clear that what we all crave is to be with our friends and family. People are the most important aspect of our lives, and they always have been.

I hope that we will all be able to safely be with friends and family in 2021. I hope that everyone across the world has access to the vaccine. I hope that when we do ‘return to normal’ that we do so as people who are more kind to one another and more understanding than before.

The extra time I had with my family this year is what I appreciate the most. Schedules were flipped on their heads, but everyone managed and it truly was a bonus that we were all together this year due to the pandemic, when we would not have been otherwise. We also started a weekly menu which made all of our lives so much easier! It was a huge help, too, that everyone took their turn with cooking. With no outside activities, we were able to have relaxed family dinners just about every single night. We had never been able to do that before, due to activities and our work schedules. So while we did miss our activities, we certainly appreciated the time we had together.

Gardening also helped to keep me in a positive frame of mind. I was not one of those people who organized loads of things, or got lots of things done, or mastered a new craft this year. But that is O.K. I enjoyed lots of time in the garden and with my chickens. I crocheted two projects – a blanket and a sweater, and I got back on track with my fitness. Especially this year, that is more than good enough.

I wish you all the best in 2021! Thank you for visiting my blog, leaving a comment, or hitting the ‘like’ button. I appreciate you!

Stay safe.

In Peace,
Dana

This morning’s view, December 31st, of our playhouse with a light dusting of snow and the sun shining.
Chicken coop sun and snow Dec 31st
While on the other side of the garden this morning, the chickens weren’t sure if they were going to venture out into the white stuff or not!
Dana in newly finished sweater
Just in the nick of time! My goal was to finish this sweater by the end of 2020. It was a long time coming, since I had to completely redo both the front and back as I used American stitches instead of English stitches, and I hadn’t realized it until completing the front (after I’d already finished the back)! No matter, it is done correctly now, and I’m quite happy with it – and glad to have learned my lesson!
Chickens under coop in sunlight
Just a view of my girls under their house.
Kitty cat under bags
This is Kitty, our very spoiled cat. She has been enjoying sleeping on and under paper this Christmas break.
Playhouse with fresh lavender wreath
A look back at the fresh lavender wreath I made. It looks nice on our freshly painted playhouse!
Sunflower arrangement September
I had fun making arrangements this summer.
Rose arrangement
Here’s another floral arrangement I made from our flower garden.
Full view arrangement in sun (1)
I was practicing a carefree, loose approach!
Sunflower full view
I hope to always have sunflowers in the garden.
Hydrangea Vanille Fraise Paniculata Renhy full plant pink in sun
Hydrangea Vanille Fraise Paniculata Renhy in all of its glory!
Roses and Poppies in sunlight
It was definitely the year of the poppy!
Cooked apple pie (1)
It was also the year of the apple. We had so many apples! (and we ate so many apple pies!)
Organic Sweet Pea Tamar Mix full view (1)
My Organic Sweet Pea Tamar Mix bloomed all summer long.
Helenium and daisies
Helenium and daisies – what is not to love?
White lilies closeup in morning sun
White lilies first thing in the morning.
Cormac on playhouse in early summer
You can just barely see him, but my son is on the roof. He and my husband put some shingles on the playhouse roof for me.
LIght pink david austin roses group
Roses were a huge highlight of my garden this year. They are mostly David Austin roses.
Dutch Iris and Teasing Georgia roses in dark
Dutch Iris and Teasing Georgia (David Austin) roses
sunny foggy morning birch trees
My favorite addition to the garden this year: Birch trees!
birch trees
A view of the new birch trees right after they were planted.

Thank you again for visiting! Have a Healthy and Happy New Year! 🙂

Creative fun designing a Hydrangea Wreath

Hi there! You are very welcome to my blog. September is a great month, don’t you think? You can feel a distinct change in the air with the start of fall, or as oft happens to the kids on their return to school – it turns into a beautiful Indian summer! September is also when I like to get creative with dried mophead hydrangeas.

Mophead Hydrangeas dry really well – when you cut them at the right time. Even after all of these years, I’m still learning! The flowers/stems have to be sturdy. If they are young they will wither and the flowers don’t look as nice. I hang mine upside down, because that is easiest for me. I’ve had flowers dry while in a vase, too.

I used a 17 inch straw wreath frame, and this time I used floral wire as well as floral ‘u’ pins to attach the flowers. It is simply a case of covering the frame with flowers, one at a time. Surprisingly, the flowers are forgiving and you can squish them together, or squish one in here or there to fill in gaps. This frame is bigger than I usually use, and the shape ‘got away from me’! I have three rows of flowers going around the frame, instead of my usual two. It was a funny shape when I finished the first time! I realized after I’d hung it on the door that it wasn’t quite right. I just squished in some more flowers here and there and it is more or less a decent shape now. I can get away with that because: 1. It is just for me, and 2. that’s what you get with hand made!

These wreaths really aren’t difficult to make, as long as you have the materials. I have to say that some of the flowers I used were somewhat shrivelled, but when they are all mixed in I think they look O.K.. 🙂

I hope that your September is going well. Any creative plans?

In Peace,
Dana

basket of hydrangea
It all starts with cuttings from the garden.
basket of hydrangea full garden view
The colors are pink, purple and a bluey-green, but they mostly dried the bluey-green!
hydrangea collage
They sure were beautiful when I cut them!
Hydrangea Wreath beginning
It all starts with everything on the table! I had the dried flowers in laundry baskets. Like I said, they are pretty forgiving 🙂

In the picture above you can see the floral wire I used for half of the wreath. It is in the middle of the wreath. I wrapped it around the stem and then around the wreath, and then again around the flower (that part wasn’t fun). It then became more difficult than helpful to me, so I switched to the floral U pins. I have some pictures in this blog post of the floral U pins as they are used.

Hydrangea Wreath wire closeup
A peek at the wire.
Hydrangea Wreath a bit done
It was after this point that I switched to using the floral U pins.
Hydrangea Wreath half finished
Here you can see the start of my funny shaped wreath…
Dried FRESH lavender wreath September 2020
This is the lavender wreath I made this summer from fresh lavender (not dried). It is now well dried, but I think it looks nice. This is the kitchen door I always have a wreath hanging from! I had to take this wreath down to hang my hydrangea wreath.
Hydrange wreath vs 1
OK, so I hung it on the door and realized it needed some more shaping! 🙂
Side view inside hydrangea wreath
Closeup view
Hydrangea Wreath full view
Ta-da!
Hydrangea Wreath side view outside
Another side view
Hydrangea Wreath + my daughter
My daughter was a good sport about holding it for photos and helping to take photos.
Dana + Hydrangea wreath
She looks a lot like me, doesn’t she?

Thank you for stopping by. Take care and stay safe!

Be the Change and Say His Name #GeorgeFloyd

Heart shaped roseHello, You are very welcome to my blog.

A lot has been weighing on my mind over the past number of days, specifically the topic of racism, and the horrific death in the U.S. of George Floyd, his death caused by the police. I can’t make sense of it, or the countless times this has already happened to people of color. What I find eye opening are the personal stories of what ‘every day life’ is like for people who simply aren’t white. Have you read their stories? Eye opening is one way to phrase it, scary is another, unacceptable is another. People who cannot live their lives without extreme caution of how they are perceived by others, namely the police. Where the simple fact of being a man of color makes you threatening. A life where injustice is the accepted norm by those carrying out the injustices – with no repercussions.

How has this gone on for so long? We are all equal, and yet clearly we are not all treated as equal. But this time, this time seems to have triggered a response from not just those in the U.S., but the world. This time it has gone too far. Although we’ve been told before, now it seems to be sinking in, what it *really* means to be a person of color in America.

The conversations need to start at home. How we treat one another, how we speak of others, how we act towards those who aren’t part of our ‘inner circle’ – these are all ways in which the next generation learns how to behave. They will see and learn from us. If we sit on the sidelines and do and say nothing, they will learn from that, too.

It is my hope that this collective outrage will finally bring about the changes that are long overdue. This isn’t about politics, it is about right and wrong. The Obama Foundation website has numerous ways for Americans to get involved. Have a look here.

I have not lost hope that there is good in the world. We’ve seen it all week long – the peaceful protests, the community clean-ups, some police joining in the protests. Change is possible. It has taken too long, but it can and must happen now.

Because #BlackLivesMatter .

In Peace,
Dana

Reflections on Oxford dictionary’s Word of the Year 2018 – Toxic

Toxic

Honestly, I don’t usually pay attention to the “word of the year”, but this year’s winning word, toxic, caught my attention. To me, it relays such a negative feeling about the year as a whole.

I’m writing this in December, where for the entire month we prepare for Christmas. We are filled with the Christmas spirit, singing Christmas songs, decorating every nook, and there is simply a wonderful feeling of joy and anticipation in the air! But the reality is that “Toxic” was the word of the year…

Nativity Scene

One of our larger Nativity scenes

According to the Oxford Dictionary website, “the Oxford Word of the Year is a word or expression that is judged to reflect the ethos, mood, or preoccupations of the passing year, and have lasting potential as a term of cultural significance.”

stained glass nativity scene

One of my favorites, an antique, stained glass nativity scene

They further explain that, “in 2018, toxic added many strings to its poisoned bow becoming an intoxicating descriptor for the year’s most talked about topics. It is the sheer scope of its application, as found by our research, that made toxic the stand-out choice for the Word of the Year title.”

We have many Nativity scenes of all sizes. This one is only a few inches high.

When I hear the word “toxic” my mind is filled … with images of poison! I don’t want to expand on the many uses of toxic. (Hence, I have filled this post with pictures of what Christmas looks like in our home!) Instead, I’d like to propose that we make 2019 a year filled with positivity. We can even start right in our own gardens! Ditch the chemicals and go organic. Start composting to reuse your kitchen and garden “waste”. It all starts with small changes that we all can make. Reduce, Reuse, Recycle.

Nativity Scene

A rustic, handmade star lighting a Nativity Scene

Stepping out of the garden, I hope we will all be a little more kind; Not just to those we know, but to those whose stories we know nothing about.

And hopefully, by this time next year, the “word of the year” will be one reflecting something positive.

Christmas decorations

Christmas decorations can be found everywhere in our home!

Wishing you much Peace, Joy, and Happiness for 2019 and always,
Dana

Love

Peace, Joy and Love

Get out and Garden: Loosen up your soil (and don’t mind the birds!)

Flower bed at our front gates

Flower bed at our front gates

Hello!

I had the great pleasure of working in the garden a bit this past week.  I was loosening up the soil in one of my beds.  It was only recently that I learned that this is quite a good thing to do for your soil. Make sure you don’t dig up your plants, but the soil around them should be nice and loose.  This also makes it MUCH easier to pull up weeds.

Sunflowers at the end of their lives and the blueberry plant showing off some lovely red coloring

Sunflowers at the end of their lives and the blueberry plant showing off some lovely red coloring

I live in the country and we have lots of birds around nearly all of the time.  It is kinda fun to see them when they move in what seems to be a huge formation. A wee bit of a distraction during my gardening.

The video is quite short.  I was just sharing the beautiful day with you!

I hope you are able to get out and enjoy some nice weather where you are.

In peace,
Dana

Birds vs. Laundry

Hi there!

Just a quick hello today.  I thought this was rather funny.  It was SUCH a lovely day this morning that I had to hang my laundry outside.  But as I was hanging it, I could see the birds gathering around.  Lots and Lots of birds.  I should have just called it a day and brought the sheets inside…

 

A little bit of purple is just about everywhere!

20160913_171749

I hope I made you smile!  (I rewashed the sheets and hung them inside…)

In peace,
Dana

20160913_160752

Taking a moment to SIT in the garden

Are you like me and constantly on the go?  I mean I am constantly on a schedule.  There is just so much to plan and do and enjoy…

Running out of time, Running late, Running on time, or Running out of time: Which is it for you?

I love this clock which I saw in Glasgow.          “Go! Go! Go!”

But every once in a while, usually dictated by my body shouting that it has had enough, it is necessary to recharge.

View in the garden

Views in the garden today

Today was that day for me.  Life has been pretty full for us lately, all good, but it has me rather run down.  I am so thankful that I had the opportunity to rest today, and really enjoy my garden (after a few chores, of course!).

Hawthorn tree in full bloom

Hawthorn tree in full bloom

What I really wanted today was a nap; but between the sunshine, and the neighbouring farmer working his field, that was just not happening.  So I did a few jobs that have been on my list:

  • Turned over a new flower bed.

new flower bed

new flower bed

  • Turned over the compost.

Compost looking pretty good

Compost looking pretty good

  • Marked with stones the hyacinth before they fade away.

Pink & White Hyacinth from early spring

Pink & White Hyacinth from early spring

Same garden, but the pink hyacinth are replaced by purple flowers.

Same garden, but the pink hyacinth are mostly gone and now it is a purple garden with lilacs, allium, Columbine, and Iris.

After those jobs were done, then I sat in the grass and watched, and listened, and simply enjoyed the garden.

view in the garden toward one of our cherry trees

view in the garden toward one of our cherry trees

view of our "messy" garden that will hopefully be cleaned up this summer...

view of our “messy” garden that will hopefully be cleaned up this summer… You can see some orange California poppies

Christmas tree

allium garden

allium garden (*great* year for allium this year, following last year’s poor show…)

Blue Tit bird feeding babies in the basketball hoop pipe...

Blue Tit bird feeding babies in the basketball hoop pipe…

Wow, what a feeling that was.  It was kinda strange because I really and truly have a hard time sitting and relaxing.  The weather was definitely a huge help. We have had very sunny, warm and simply perfect days.

Monkshood & bee

The bees were busy but hopefully also enjoying the good weather!

I hope that you are able to take some time out to enjoy all that is around you, too.

In peace,
Dana

 

Wordless Wednesday: Betty’s quilt

Betty's quilt

Betty’s quilt

Last week’s Wordless Wednesday featured a picture in my friend Susan’s kitchen. This week I am featuring a picture from my friend Betty’s kitchen.  I wonder if this is going to be a new trend?  🙂

I’m really failing on this “Wordless” part because I must tell you about how wonderful Betty, and her husband Harold, are!  I took this picture in their kitchen last summer when I had the pleasure of visiting them. They were our next door neighbors for ten years when we lived in Central New York.   Their house is filled with so many neat antiques.  They are both 87 years young and still doing the things they love to do, like gardening, quilting and painting!

Simply amazing

Simply amazing

Betty made this quilt and I think it is so beautiful!  Just looking at it makes me smile and think of how much we enjoyed being their neighbors and having an “extra set” of grandparents right next door.

Capture the moment, share the love, and cherish the memories.

In peace,
Dana