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

#41 ๐Ÿ’œ Rare Disease Day 2016


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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!ย Todayโ€™s feature is Rare Disease Day, which takes place annually on the last day of February ๐Ÿ™‚

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 livesย (my husband’s hypophosphatasia akaย HPP and my retinitis pigmentosa akaย RP), this particular dayย is more meaningful than most!

We’reย 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 untilย 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 myselfโ€”with every intention ofย not ever mentioning it. Butย 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 trulyย 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 ๐Ÿ˜ฆ 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 ๐Ÿ™‚

Soย 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 โค

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 ๐Ÿ˜€ 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 fullyโ€”all with less than half the pain meds from prior to treatment!!! ๐Ÿ˜€ Praise the Lord, for He is good! โค

Introducingโ€ฆ my Brambleโคtini Heart knitting pattern

โ€“โ€” ๐Ÿ’œ Have you thought about buying a copy of my knitting pattern today? ๐Ÿ’œ

โ™ฅ โ™ฅ โ™ฅ

Thank you for visiting my Knitting With Heart blog today!
Iโ€™d love it if youโ€™d also stop by and โ€œlikeโ€ my Knitting With Heart facebook page.
Feel free to share links to my posts ๐Ÿ™‚ I look forward to hearing from you!

Todayย is a special day!ย โ™ฅ Jackie

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33 responses

  1. Thank you for this blog. Thank you for making and taking time to ‘spell out’ the issue. No, each one of us has a different journey . A rare diseases day helps us to stop for a few minutes and appreciate the many who draw their strength and Grace from a Higher Place but still must live and struggle through the reality of their own daily pathway. In my heart I hold it and pray.

    Liked by 2 people

    March 3, 2016 at 2:22 pm

    • Thank you for your prayers, Faye โค This post actually began as a simple update for hubby's HPP progressโ€”with every intention of continuing to keep my RP to my cyber-self… But something (God) got a hold of me and I could not stop it from flowing out! Truly, we all struggle in some way. My hope is that God will use this post to encourage others in their struggles ๐Ÿ™‚ โ™ฅ โค

      Like

      March 3, 2016 at 4:40 pm

  2. Lisa

    While I may over or underestimate what you are able to see in your vision, I want you never to underestimate how I value your sharing your faith journey with me and your friendship! So glad you are my sister! ๐Ÿ’•

    Liked by 1 person

    March 3, 2016 at 7:40 pm

    • My dear, sweet sister Lisa โค There are precious few who are so true blue, as you! ๐Ÿ™‚ โ™ฅ โค

      Like

      March 3, 2016 at 10:10 pm

  3. I’m struggling to know what to say Jackie. You have been given some heavy crosses to bear but you bear them well, both of you. My nan’s eyesight deteriorated over the years until she became legally blind. She was also deaf from childhood but it was her sight that bothered her the most. I used to wonder what it would be like and found it hard to imagine how I would cope. You are an inspiration Jackie. God bless you both. โค

    Liked by 1 person

    March 4, 2016 at 4:03 am

    • Thanks for your heartfelt comment Sarah โค Yup, we all struggle and can only try to imagine another's struggle. We learn to cope, while God provides the strength and people-support we need. The RP has destroyed my peripheral, which qualifies me as legally blind ๐Ÿ˜ฆ But more aggressive forms of RP destroy central vision first, so it could be worse and I consider myself to be quite fortunate! Especially fortunate in having a husband who, despite his physically fragile bones, is the strongest person I've ever met!!! God's will be done, yet my prayer is for that to always include knitting and blogging! ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      March 5, 2016 at 12:33 am

      • We’re both so fortunate to have strong men at our sides. โค Life would be so much harder without them. May we never take them for granted.
        I wish you many, many years of happy knitting and blogging. My nan was an avid knitter and crocheter into her nineties. ๐Ÿ™‚ I would've had a hard time explaining blogging to her though. Explaining email was hard enough! ๐Ÿ˜‰

        Liked by 1 person

        March 7, 2016 at 6:50 am

        • Amen to that ๐Ÿ˜€ Great guys, our guys… God is good! ๐Ÿ™‚ โ™ฅ โค

          Liked by 1 person

          March 7, 2016 at 1:58 pm

        • Oh wait… something strange happened there! Only the first sentence of your comment was shown in the feed… weird! But yes, our husbands are precious treasures!!! … and vice versa ๐Ÿ˜‰

          It’s so good to know your nan could knit into her 90’s! My mom is in her 80’s and blind from RP/glaucoma, but still looking to learn new stuff. After years of repetitive explanation, I’d say she’s able to imagine the intenet fairly well. Thankfully, her form of glaucoma is not hereditary. And it’s a huge relief to hear my RP specialist express confidence in my eyesight’s enduring abilities for continued knitting/blogging!!!

          One day at a time, the Lord provides everything we need! ๐Ÿ™‚ โ™ฅ โค

          Like

          March 7, 2016 at 2:53 pm

          • Yes, that happens to me a lot – only getting partial messages in feeds. Often I don’t notice until I go to the person’s blog to re-read the comment or the post. ๐Ÿ˜ฆ WordPress is always tripping me up with things like that.
            I’m glad that your specialist is optimistic about your eyesight. What kind of things does your mom like to do? Has she tried finger knitting? I’ve never done it myself but I imagine it’s easier to do by touch than knitting with needles.
            One day at a time, indeed. I have to keep reminding myself of that.
            Have a great day. โค

            Liked by 1 person

            March 8, 2016 at 5:48 am

            • Oh boy, now I’m hoping this hasn’t already happened without my realizing it… Yikes, always something keeping us on our WP toes! :-/ My mom loves to cook ๐Ÿ™‚ She used to sew and was the first person to try to teach me to knit, but recipes are in her heart! … I hope you’re enjoying your day, Sarah! Our snow’s been melting and I’ll be posting some pics soon ๐Ÿ™‚ โ™ฅ โค

              Liked by 1 person

              March 10, 2016 at 12:55 pm

              • Cooking, eh? That must be a bit of a challenge for her. But so worth it. ๐Ÿ™‚
                Weather is cold and wet here but no snow. Looking forward to seeing your pics. ๐Ÿ™‚

                Liked by 1 person

                March 11, 2016 at 2:51 am

  4. Pingback: My Article Read (3-4-2016) – My Daily Musing

  5. Jackie, thanks for sharing ‘yourself’ here. I’ve known people with RP and it certainly seems to be challenging but I’ve been surprised at how positive they, like you, are about it.
    I love how you describe your beloved husband. You make a great pair! xxxx

    Liked by 1 person

    March 5, 2016 at 2:09 pm

    • Thanks Jean โค Yes, RP is challenging because (like any disease) it steals freedom. Thankfully, blogging's freeing "escape" quality has helped me feel more positive. This post was quite the battleground, though… I didn't want to let RP clip my wings (again) by skewing cyber-people's view of me! I hate it when people see RP before they see me ๐Ÿ˜› Ah well, done now and feels okay. I'd still be hiding, if not for my beloved pillar of strength hubby! I've often said, "God is painting a beautiful picture, with us" ๐Ÿ˜€ And life goes on… ๐Ÿ™‚ โ™ฅ โค

      Like

      March 5, 2016 at 9:44 pm

  6. Thank you so much for this wonderful post and inspiring message! Thoughts of healing sent to your husband!

    Liked by 1 person

    March 8, 2016 at 4:35 pm

    • Thanks Inese โค Your support is greatly appreciated! Hubby has flown to Winnipeg today, for his 6-month appointment with Dr. Greenberg ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      March 10, 2016 at 1:15 pm

  7. Grandtrines

    Reblogged this on Lost Dudeist Astrology.

    Liked by 1 person

    March 9, 2016 at 1:07 am

  8. Thank you for your bravery and sharing with us. Thanks to your post, I googled RP and now know much more than I did before about this illness. I would imagine it would make even something simple like posting a blog challenging. Please keep visiting with us here in virtual land and hooray for the good news about your husband!

    Liked by 1 person

    March 12, 2016 at 6:59 pm

    • Thanks for your support and making yourself more aware, EB ๐Ÿ™‚ Fortunately, my RP has not been too terribly aggressive… whew… and Apple computers are very RP-friendly! My husband’s HPP was really becoming a burden. But then last summer, the treatment came through!!! It’s a one-year clinical trial, but we’re hoping/praying he’ll be able to continue for the rest of his life ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      March 13, 2016 at 11:25 pm

      • I hope so too! And yay for Apple computers–I love them!

        Liked by 1 person

        March 14, 2016 at 9:32 pm

        • Yup, coming up on one full year since my iMac died and left me to blog within this cramped-yet-capeable iPad space… I never would’ve believed it possible! ๐Ÿ™‚ โ™ฅ โค

          Liked by 1 person

          March 15, 2016 at 11:39 pm

  9. Your blog is always so heart warming and encouraging. I had no idea you were struggling with such weighty issues. May God keep you and your husband in His care. โค

    Liked by 1 person

    March 17, 2016 at 10:37 am

    • Thank you, Anna โค Your support means a lot to me! Everyone struggles in some way… But the Lord provides what we need. My own strength could never handle it! ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      March 18, 2016 at 12:25 am

  10. โ™ฅ

    Like

    March 23, 2016 at 11:44 pm

  11. I empathize with you. I have one of the rarest diseases in the world. Also, I love your work, I am a creoheter at heart, but my hands don’t work like they used to. ๐Ÿ™‚

    Liked by 1 person

    July 9, 2016 at 2:05 pm

    • Thanks Nancy ๐Ÿ™‚ Yup, rare diseases try to steal our joy :-/ But by the grace of God, we’ll keep doing what we canโ€”with what we’ve gotโ€”for as long as we’re able… And hopefully, like you, redirect our disabilities toward a positive impact in the lives of others ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      July 12, 2016 at 1:48 pm

  12. I completely agree with you. God is my strength and my joy and I am on a mission to spread awareness and help victims of sexual violence and human trafficking. I am thankful that I have Tropical Spastic Paraparesis. It sets me apart so that after people (doc, nurses, attendents, people I meet when I can get, etc) want to know how i got it which opens the door for me to share about human trafficking. Suffering, while not pleasant, brings unexpected blessings in our journey. โค Thank you for responding! I hope we can become good friends. โค ๐Ÿ™‚

    Liked by 1 person

    July 13, 2016 at 12:32 pm

    • Dear Nancy โค You are a blessing and I thank God for filling your heart with His incredible peace which passes all understanding! We've also experienced some of the blessings you've described ๐Ÿ™‚ Suffering is not pleasant, but it's not about us either… Praise the Lord, who gives us new strength every dayโ€”sustaining us to carry on according to His will… Then one of these days, He'll wipe away every tear! (Revelation 21:4)
      Thank you for your comments and I appreciate your patience, regarding my repliesโ€”since I've been living inside my iPad's increasingly cramped quarters for the past 15 months :-/ Looking forward to reading more of your blog and becoming very good friends! ๐Ÿ™‚ โ™ฅ โค

      Liked by 1 person

      July 14, 2016 at 2:03 pm

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