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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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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


the KWH iPad Show #23 💜 healing hope for HPP

Asfotase Alf

frowning Mac computer

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Hello & Welcome
to my 23rd episode of the
KWH iPad Show!

Today’s feature is our road trip to Winnipeg
… in pursuit of a healthier tomorrow 🙂

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Asfotase Alf

And we’re back! … Back home, after our whirlwind road trip to Winnipeg’s Health Sciences Centre—where we finally met Dr. Cheryl Rockman-Greenberg in person and received our first month’s prescription of Asfotase Alfa!!! Dr. Greenberg is the renowned driving force behind clinical trial research for hypophosphatasia (HPP). Over the past decade, other doctors have allowed Husband’s paperwork for obtaining HPP treatment to fall short. But that all changed when we found Dr. Greenburg and Dr. Christopher Lee (our personal physician). We thank God for enabling them and blessing us with their dedicated effort to help make this medical mission trip possible! ❤

As well… I’m back to feeling like my usual self—after suddenly feeling mysteriously “zapped” of all energy for the past 5 days. Weird :-/ Dragging myself around and feeding my facebook page was about all the strength I could muster. At least the facebooking was fun… So it’s sure great to be back—in more ways than one!

Here are a few iPad photos of memorable moments and prairie highway scenery from our trip…

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Proverbs 16:9

We set out before sunrise in our 2002 Toyota Celica—which still runs bright like its sunshiny paint colour 🙂 After driving 10 hours, we stopped for night at the Yorkton Days Inn in Saskatchewan. During 2 days of medical testing in Winnipeg, we stayed in an east-facing Canad Inns room (see 13th floor sunrise photo), conveniently attached to the hospital. We also got together with family and celebrated one nephew’s 13th birthday! The last time we saw family was last summer’s trip to the Niagara Peninsula. The time before that was our Thanksgiving 2013 road trip… Fun stuff! And finally, an especially yummy thanks to our sisters, for filling our bags with their homemade goodness of cherry jam, spaghetti sauce, salsa and cookies… Plus, one perfectly purple cupcake-shaped handmade soap! 🙂 ❤

Homeward bound, we drove straight through for 14-hours—eager to refrigerate our precious HPP-fighting Asfotase Alfa cargo… Now we’ll wait and see how long it might be before Husband’s daily needle dosage shows signs of healing 🙂

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!

Hope continues… ♥ Jackie


Something to Smile About

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Thank You Tony 🙂 for this 100% smile-worthy list! There’s just one more thing I’d like to add…

At the beginning of July, I wrote a blog post plea for HPP. And for the past couple of weeks, we’ve been smiling inside and out because the doctors finally called with hubby’s approval to begin Asfotase Alfa HPP treatment 😀 That’s the news we’ve been waiting, hoping and praying to hear for SO very long. There were times when we thought this news might never come… But now, praise God, it’s here! The car is packed and we’re driving to Winnipeg to begin the healing process!!!!!!!!!

At the time of my HPP post, only Japan had approved the Asfotase Alfa treatment. Canada and Europe have now approved it, as well! My sincere thanks to everyone who shared and/or signed the online petition from my HPP post. Special thanks to Laura @ In My Words, for reblogging that post!

So that’s all for now…
Looking forward to connecting via hotel WiFi for the next week…
Thanks again and ttys 😀 ♥ Jackie

Tony A. Smith

Give Me a Reason to Smile

   Kittens

  Puppies

  The smell of fresh baby powder

  The smile of a newborn baby

 Mom seeing her daughter for the first time in her wedding dress

A dad seeing his son graduate from high school

A red rose in full bloom

Lush fresh-cut green grass

Dark chocolate

Forgiveness

Pure love

A baby’s first steps

Bright orange sunrises and purple sunsets

Rainbows after a rain

Letter from a friend

Breakfast in bed

A cat playing with a shoestring

Playing my favorite songs on the radio and singing along in the car

Eating a full plate of spaghetti with my favorite homemade sauce

Cherry cheese cake

Popcorn and a movie at home

Talking to old friends on the phone about our days of childhood

Going barefoot in the summertime

Jumping in the pool on the first day of summer and making a big splash with a cannonball

Someone…

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the KWH iPad Show #13 💜 my heartfelt plea for HPP

frowning Mac computer

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Hello & Welcome
to my 13th episode of the
KWH iPad Show!

Today’s feature is a petition in support of
more widespread awareness of the debilitating
disease that is Hypophosphatasia aka HPP ♥

NOTE: some of the images in this post were
found via facebook or google images.

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Link to HPP online petition.

Click image to visit the HPP online petition.

 

What is HPP and why should I care?
What does HPP have to do with this knitting blog?
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HPP is an ultra-rare genetic bone/muscle disease. People with HPP are missing the enzyme required for growing healthy, strong bones. My husband has lived an active life, but was born with this debilitatingly degenerative disease. The pain it inflicts is continual and increasingly extreme. It has forced him to give up a lot—confining him to crutches throughout the past 3 years. Yet he refuses to give in by maintaining a spirited life that is gracious, kind, loving, intelligent, humble and all that is good in a human being 🙂

HPP is like a strand of faulty DNA yarn that knits hubby & I together, while we live with and endure its limiting effects every day (I wrote briefly about HPP here). My hope, by the grace and strength of God Almighty, is to see him golf once again… or at least walk without crutches, someday!

The good news is that scientists are working toward treatment. And now for the first time ever, there exists an effective clinical trial treatment—Asfotase Alfa—which is proving to be highly successful for children born with HPP!!! Hubby and his doctors have been knocking themselves out trying to access this treatment too. But alas, the government of Canada has only gotten so far as to send letters stating their eager intent to get the treatment to him… sigh … So we wait. Then when nothing happens, we alter our lifestyle accordingly and wait some more… And all the while, hubby’s precious bones continue to deteriorate 😦

But what can any of us do?

Please join us in hope and prayer for someone to finally cut through that blasted red tape and allow this treatment to begin the healing process for hubby’s bones! Treatment is seriously sitting right there, but we can’t access it… It’s a ludicrously atrocious frustration, to say the least!

Also, please join us in signing this online petition to help spread awareness for HPP and establish October 30th as the DAY OF COMBAT AGAINST HYPOPHOSPHATASIA… We and the global HPP community appreciate your effort! As well, please feel free to reblog this post and/or share this message via all your favourite social networking sites…
THANKS!!!

Screenshot of website page for HPP online petition.

Working together, we can hopefully help encourage governing bodies to stop dragging their feet on this pertinent and potentially life or death issue.

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Click the HPP images in this post to view the online petition from the AVAAZ website, which is written mostly in French. On the right-hand side, you’ll find “PREMIÈRE VISITE?”. Type your name (nom), email address, postal (zip) code and select country (pays) from the drop-down menu. Then press SIGNER to send the form.

NOTE: although the petition’s website is written mainly in French, it does include several translations for the “Pourquoi c’est importantly” write-up. Scroll down the left-hand side to find your preferred language.

Visit the Rare Disease Report website to read more about HPP.
video source

♥ ♥ ♥

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!

Thank You & Merci from the bottom of our hearts! ♥ Jackie


spring feverishness

spring feverishness
spring feverishness

image found on facebook

We’re home from Southern California, where we enjoyed a break from the snow! And just like it says in all the brochures, San Diego was sunny and warm… for the first day anyway. Perhaps you saw the palm tree photo posted on my Knitting With Heart facebook page? Those sunshiny pixels were captured upon our checking-in at the Hotel Hilton San Diego/Del Mar. That’s the spot, right next to the hotel’s courtyard fire pit, where we spent the afternoon and ate dinner! It was sure nice to relax like that, especially since we’d left our house at 4:00 AM 🙂

Then it rained the next day.

The airport taxi driver was the first to mention rain in the forecast. Apparently, it had not rained much for about a year, So of course we were (tried to be) happy for their sake. And sure enough, the rain came… and kept coming until after we left 😦 Oh well, ‘guess we’ll need to sharpen our “happy dance” steps so as not to summon the rain clouds during future celebratory capers 😉

Seriously though, we were just happy to be there. We were attending the Soft Bones educational meeting for hypophosphatasia (HPP) on “Rare Disease Day” (February 28th) in San Diego. My husband has this ultra-rare, debilitating and possibly fatal metabolic bone disease for which there is no cure. This trip was an opportunity for us to connect with others who have HPP and/or researchers working to find a cure for HPP. Indeed, it was exciting to meet with others who have been living with the same disease-related difficulties that we’ve been burdened with. More exciting, was to hear news that research has advanced far enough to make a real difference in the lives of children who are born with HPP. Our continuing hope and prayer is that the unprecedented advances in research will accelerate until an adult-appropriate cure is discovered! Thanks for hoping and praying with us!

RareDiseaseDay

Image by Sue Krug, used with permission.

En route home, at the San Diego airport, we stopped in at the duty-free shop and met a lovely Chanel cosmetics rep named Belen. We had rushed to the airport that morning, and I had not given much effort to how I looked… So of course, that’s when you meet up with someone who will analyze your make-up … lol … But she was very sweet. And so there we were, standing in the store while she applied my make-up. I mentioned how I’d like to include her in this blog post about our trip and got her business card. Well, do you know what? Belen is Belen Sanchez of Biblia Fashion… one very talented fashion designer and professional make-up artist, that’s all! Wow… I love that!

Then it was time for us to fly back home. My aircraft craft of choice for this trip was to finger-knit a few balls of newspaper yarn, which I’d spun beforehand. Have you tried finger knitting? It makes a great carry-on project! Intriguing for some onlookers too. The retired university professor seated next to me called it “ingenious”  🙂

Finally, after a 7 hour (SEVEN hour) stopover in Calgary (Calgary is approximately 3 hours by car or half an hour in the air from home) we arrived to our door at 1:00 AM. The rather nippy night air welcomed us at -31°C feels like -43°C (-24°F feels like -46°F). Those temperatures, by the way, didn’t budge much until just a few days ago… brrrrrrrrr!!! But NOW… our entire forecast is positively above normal and feels like spring!!! 🙂

It also feels like that nasty influenza, which took me by storm 3 days prior to flying south is finally nearly done for good. It had all but vanished throughout our San Diego stay (and seemed like the fastest recovery in history!). But then wouldn’t you know it… the closer we got to home? the sicker I got! So for the past week, I’ve been dragging myself around, breaking a sweat trying to do the tiniest tasks and basically living in the daze of influenza. But those days are now (hopefully) over! I rarely if ever get sick, but do believe that the tub of honey with cinnamon home remedy I was medicating with really helped me spring forward and get back to good health 🙂

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Wishing you happy spring fever! ❤ Jackie