. . . luv 'n stitches for our tired old world

Posts tagged “hypophosphatasia

#48 💜 “blog fog” and flight knits for HPP

prairie patchwork landscape aerial sunrise view

the KWH iPad Show logo

Flight Knits Carry-On WIP #2

Flight Knits Carry-On WIP #1:
. . . super-loopy-cool cast on.

 

heart in progress WIP

Flight Knits Carry-On WIP #2:
. . . my own original heart dishcloth pattern.

Types of HPP

Dr. Cheryl Rockman-Greenberg at the Soft Bones Canada HPP Conference 2016 in WinnipegDr. Jose Luis Milan at the Soft Bones Canada HPP Conference 2016 in Winnipeg

Hello & Welcome to my 48th episode of the
KWH iPad Show! Today’s feature is kniterally flying high for HPP awareness 🙂

Hey everyone… Well, it’s been more than a few weeks since my last reblog/post. I’ve been reading as many posts as possible from the growing blog community that surrounds me. Yet try as I might to write, just couldn’t break through the “blog fog” brain clog that’s been keeping all my blogful dots of inspiration from connecting into posts :-/ ‘Guess lovely outdoor crafting weather can have that effect, sometimes 🙂 Have you experienced “blog fog”? How did you get back into your blogful groove?

Anyhoo… what have we been up to?

This past weekend, we packed our carry-on and flew to Winnipeg. Direct flight departure time was Friday morning at the crack of yawn 😉 I’m so glad we could attend the 1st annual Soft Bones Canada HPP Awareness Conference at The Forks in Winnipeg. It was a really well-organized event. Out-of-town attendees stayed at the Inn at the Forks. Friday night was an informal meet & greet for researchers, patients and organizers at the Museum of Human Rights. Saturday at the St. Boniface Hospital was a full day of HPP education seminars with experts from across Canada and the USA. Then following the seminar, the conference concluded on a full stomach with dinner at the Clay Oven 🙂

We stayed an extra day in The ‘Peg…
riding the prairie summer heatwave
and
 enjoying BBQ time with family ❤

This flight also marked the first time (since our Cancun knitting fiasco in 2012, when airport security nearly confiscated my knitting needles… yikes!!!) that I’ve dared to carry my knitting aboard any aircraft. The needles were a go, ‘though the mere 1.5 hour flight was barely enough time for aerial photos, drafting this post PLUS knitting… LoL … Oh well, it felt good just knowing my knitting was near 😉 Knitting in the sky is the only way to fly, after all. And with USB ports at every seat, life above the clouds was pretty good!

Do you tend to over or under pack for travel?
My travel knitting WIPs always outweigh my destination. Only brought 2 low-risk carry-on flight knit WIPs this time. But alas, it was still too much 🙂

#1 — super-loopy-cool cast on…
See pics from my Christmas decorated staircase, including garland lengths of this cast on.

#2 — original heart dishcloth pattern…
My next original hand-knit heart design,
which is currently under construction.
Details will (eventually!) come… if/when
I ever get out of this app-sized iPad space :-/

Introducing… my Bramble❤tini Heart knitting pattern

–— 💜 Have you thought about buying a copy of my knitting pattern today? 💜

♥ ♥ ♥

Thank you for visiting my Knitting With Heart blog today!
I’d love it if you’d also stop by and “like” my Knitting With Heart facebook page.
Feel free to share links to my posts 🙂 I look forward to hearing from you!

Life is short… always carry-on with your knitting! ♥ Jackie


#41 💜 Rare Disease Day 2016

Rare Disease Day - logo screenshot

the KWH iPad Show logo

Rare Disease Day - logo screenshot

Rare Disease Day - 6000+ diseases youtube screenshot

Dear God... <3

Joel 2:25 graphic by Sheepography

Nehemiah 8:10Joel 2:25
Hello & Welcome to my 41st episode of the KWH iPad Show! Today’s feature is Rare Disease Day, which takes place annually on the last day of February 🙂

Yes, you read that correctly… On this 3rd day of March, my post’s focus is the last day of February aka Rare Disease Day. Most folks might say I’m a few days late… But is anything ever really late if it’s late on a Leap Year?!? … hmmm, anyhoo … It’s the day that counts, right? And speaking of days, it sometimes seems like there’s a frivolous “day” for anything and everything (these days). But from our perspective, having lived with rare diseases all our lives (my husband’s hypophosphatasia aka HPP and my retinitis pigmentosa aka RP), this particular day is more meaningful than most!

We’re encouraged to see global participation for Rare Disease Day up from 18 countries in 2008 to 85 countries in 2015. The RDD’s campaign objective is to raise awareness about the world’s 6000+ known rare diseases and their impact on people’s lives. And between flying to San Diego for Rare Disease Day 2014 until finally gaining access to unprecedented HPP treatment in 2015, I’ve written about my husband’s ultra-rare HPP disease. Here in blogland, however, it’s been easy for me to keep my RP to myself—with every intention of not ever mentioning it. But today, I’m opting to face my fears for the sake of inner-freedom!

In real life, people’s basic response to my RP is usually either understanding or underestimating. Those who “understand” tend to lean toward sympathy. No one can truly understand, but I realize and appreciate their effort. Those who underestimate tend to leave me feeling “less than” or simply less than the real me 😦 In contrast, stepping inside this blog grants me the virtual freedom to be the real me… That other “me” whose eyes cannot properly see must wait outside in the hallway of my real world’s harsh reality 🙂

So while filling you in on this bit about me might not mean much to anyone else, it’s a big deal for me. Though truly, who can honestly say their lives are untouched by disease? The best we can really do (besides prayer and trusting the Lord with all our heart) is to simply keep doing what we can… with what we’ve got… for as long as we’re able! And when life gives us crutches to lean on, our daily strength comes from leaving our own understanding behind and leaning toward the Creator of all things ❤

Now finally, a positive update of my husband’s HPP progress… There’s been a hint of skip in his step since his first month of treatment 😀 The crutches remain crucial, but the medicine is definitely helping! Now nearly 6 months in, he’s able to sleep soundly and live life more fully—all with less than half the pain meds from prior to treatment!!! 😀 Praise the Lord, for He is good!

Introducing… my Bramble❤tini Heart knitting pattern

–— 💜 Have you thought about buying a copy of my knitting pattern today? 💜

♥ ♥ ♥

Thank you for visiting my Knitting With Heart blog today!
I’d love it if you’d also stop by and “like” my Knitting With Heart facebook page.
Feel free to share links to my posts 🙂 I look forward to hearing from you!

Today is a special day! ♥ Jackie


the KWH iPad Show #24 💜 I’m thankful for…

frowning Mac computer

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Hello & Welcome
to my 24th episode of the
KWH iPad Show!

Today’s feature is Thanksgiving and
a few things that I’m thankful for 🙂

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image

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This weekend is
“Thanksgiving” in Canada!

One day of thanks is good…
One 3-day long-weekend is grand…
But with millions of moments and
cherished memories along life’s way…
I’d say the calendar overflows with
an abundance of joy to fill our hearts
with thankfulness on ANY given day! 
This is true, even on a “bad” day!
Wouldn’t you say?
Now looking at this photo of my ol’ iMac
that died 6 months ago, I’m ever-thankful
for my iPad that has kept me blogging
all these months—
just you, me & my iPad

So this year…

I’m thankful for my husband’s precious prescription of HPP medicine and the doctors/researchers who worked all these years to give us hope for a healthier tomorrow! Plus, so thankful we could visit family en route to picking up the first month’s prescription! 🙂 ❤
&
I’m thankful to live in a peaceful nation where individual rights for freedom of speech, politics and religion are valued, respected and encouraged!
&
I’m thankful for unobstructed
sunset views from our own backyard!
&
I’m thankful for YOU ❤
This blog would be a lonely cyber-place
without all of you guys stopping by!

Introducing… my Bramble❤tini Heart knitting pattern

–— 💜 Have you thought about buying a copy of my knitting pattern today? 💜

♥ ♥ ♥

Thank you for visiting my Knitting With Heart blog today!
I’d love it if you’d also stop by and “like” my Knitting With Heart facebook page.
Feel free to share links to my posts 🙂 I look forward to hearing from you!

Happy Thanksgiving! ♥ Jackie