Sharon My Life: September 2016

Monday, September 26, 2016

Atlanta Trip Part 2: ASBMR 2016 Advocacy with Soft Bones

One of the highlights of the weekend was when Deborah Fowler, President of Soft Bones, did her first Facebook live video. It was at the Soft Bones booth where we were passing out and demonstrating information about Hypophosphatasia (HPP.) We had our big screen TV connected to the SoftBones.org interactive tool to display a toddler with HPP and a toddler without HPP to exhibit the vital differences between the two. They also displayed an adult with HPP and one without through the interactive tool. At the booth we offered HPP Hippos (which are very popular), skeleton key Soft Bones USB drives with HPP information on them, HPP bones pens, packets of information, as well as the Soft Bones grant application for research. Here is the link to the video if you would like to watch it: First Soft Bones Facebook Live with Deborah Fowler.

Our family's personal Soft Bones HPP Hippo!
His name is Tibby named after the tibia bone.

The second video was with Alexion at their booth with information about Hypophosphatasia as well as the other side about their drug Strensiq. Strensiq is the first FDA approved drug for perinatal onset, infantile onset, and juvenile onset HPP, which is very exciting for all of us. You can find the video at this link: ASBMR 2016 Alexion Booth Facebook Live with Deborah Fowler.

Dave, the love of my life that inspired me to pray,
believe,search and hope for a treatment for HPP for all affected by it.

Saturday evening was a wonderful dinner as we gathered around the table with different stories, experiences, and passions that had brought us together through Soft Bones. It was a joy to get to meet and celebrate the journey we have all been on to discover a treatment and some day I pray that together we can find a cure for Hypophsophatasia (HPP). My daughter Rebekah and I were so honored to be there.

Rebekah and I at the food court getting Chick fil A.

There were touching moments meeting doctors and researchers earlier that day and sharing our thanks with them for all they have done to create a treatment that we were told would never exist in my husbands lifetime! I wept as I thanked them and one wept as he asked me about my husband. He asked me when was he diagnosed? How was he doing? These people I had just met had such care and compassion, and the connection I felt with them was instant, precious, and amazing. These were some of the people I had spent my whole life looking for and so many of them were meeting us all in the same weekend. It was absolutely incredible and overwhelming!

One scripture I had been thinking about was James 5:16b "The prayer of a righteous person is powerful and effective." I already had been thinking about that scripture in relationship to this trip because so many things we have prayed for such as Soft Bones, HPP patients, and for a treatment for Hypophosphatasia have been answered. I cried many tears of joy as we met, hugged, and joined with people that years ago I promised my husband I would find.

Rebekah was known as the Starbucks Fairy.

Several years ago I searched the internet for HPP to find a website in Canada and a Yahoo group that people who had HPP from around the world were participating in. I had the privilege to meet Debbie Taillefer from Atlanta who helped to start the Yahoo group and who connected me with Deborah Fowler the founder of Soft Bones. The rest, of course, is history. So many answers to prayers, so many moments of tears and joy, and so much more work to do. I am looking forward to the next chapter in this amazing journey with Hypophosphatasia.

Sharon

Read Part 1: Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

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Saturday, September 24, 2016

Atlanta Trip Part 1:ASBMR 2016 Advocacy with Soft Bones

Atlanta Trip Part 1: ASBMR 2016 Advocacy with Soft Bones

This past weekend my daughter Rebekah and I had the honor of traveling to the great city of Atlanta for the American Society of Bone and Mineral Research (ASBMR) conference and to visit our dear friends the Gregory family. During our visit we met with several people from Soft Bones, the Patient Advocacy Group for Hypophosphatasia (HPP).

Mother/Daughter selfie on the plane to Atlanta!

Outside the venue for the ASBMR conference.

During our time at ASBMR we had the opportunity to hang out and chat with other patients, doctors, and researchers. Everyone was so caring and kind. Soft Bones, our patient advocacy group, really pulls together to get things accomplished and spread the word about HPP.

A quick "family pic" at the conference.

While we were there I got to meet the president of Soft Bones, Deborah Fowler, whom I had befriended through the HPP community on social media several years ago. This happened to be the first time we met in person and I can't express to you the joy in connecting with her. It was also a joy to connect with the wonderful Soft Bones community of patients and caregivers that have such strong hearts despite their soft bones! It was truly incredible!

It was amazing to finally meet in person "the" Sue Krug from Soft Bones.

One of the main assignments of this weekend was to help support Soft Bones by talking with doctors and researchers at the Soft Bones booth. During this time of visiting and participating in staffing the booth I was able to meet and talk with some of the doctors and researchers that helped to develop Strensiq. Strensiq is the first treatment to ever be approved by the FDA for perinatal onset, infantile onset, and juvenile onset HPP. It's amazing to see the positive progress in the patients that are on the medication and see the hope in their eyes!

Got to see the picture of my husband Dave at the booth!

Soft Bones released a new tool that we were able to promote in the booth to show a difference between a toddler with HPP and a toddler without HPP as well as the difference between an adult with HPP and an adult without HPP. It’s an amazing tool and I loved seeing people’s faces as they saw the differences in the 3D model. You can check out information about Soft Bones, Hypophosphatasia, and play with the new tool on the SoftBones website.

HPP toddler interactive tool available on the SoftBones website.

After returning home from the conference, I realized this weekend helped to fulfill a promise that I made to my husband 26 years ago when he had his first symptoms of HPP during our marriage. I told him that someone, somewhere, knew something and that I was going to do whatever I could to find them and to find something that would help him. This weekend was the end and the beginning of that adventure.....

Check back on Monday for part two!

Can You Fix This?

Tonight, as I was searching my email for a blog post my cousin Connie Cameron wrote http://www.conniecameron.com, I came across an email I sent to a few friends in 2014. And as I embark on a new season in my life of doing things that sometimes I don't feel perfectly equipped to do, I find this article feeding my soul during yet another season of transition. I hope this speaks to someone else who may be in transition themselves, as I find myself moved by this particular piece in my own season of transition.

"I thought about posting this on Facebook but decided that was too big of an audience right now. So I am sending this to three special ladies in my life. Thanks in advance for bearing with me while I reflect on some things. They say you learn something new every day and it seems that lately I have been learning on overdrive massive amounts of new info. It all reminds me of a dream where I had to buy five gum balls in order to get the information I needed. Hmmmm, perhaps that is part of this season for me.

Today, Sharon Martin (my Pastor's wife who is leaving our church after her husband has been on staff for 32 years) walked up to me and said 'I have an afghan that my grandmother made for me (these moments when people tell me about this stuff I am about to cry and or panic because I do not know what is coming next but it usually stretches me) and the dogs have put a couple of holes in it. I know it won't be perfect but would you try to fix it please?' I said 'where do you want it after that?' To which she replied 'just to store it at my Mother-in-law's house for now.' So I said I would look at it. I honestly felt like I would cry when she told me her grandmother made it. Not sure which Grandmother made it but if it is the one on her Mom's side (which I found out later it was) it would be an interesting coincidence as that woman and her family were neighbors with my grandparents on my mothers side. Particularly interestingly, is that that specific woman sat with my grandmother while she labored for her first child until the Dr came. Life is amazing and strange at times.

I have only been asked to do this one other time and that was by a friend for her daughter whose blanket that had been sent home from the hospital with her had been loved beyond repair. I just made her a new one and I believe they put the loved one away for safe keeping.

I went to look at Sharon's afghan today and it was shades of blue with a bit of black. When I looked in our supplies I found that we had a yarn that was a light shade of blue that did not match perfectly but would repair the hole and keep the blanket from raveling to threads. This meant that I would have to creatively make a patch out of just a few stitches. Something that I had never done before, something that would not be perfect, something that would be a labor of love, and something there were no instructions to be found for (there wasn't even a tutorial on YouTube!). I prayed a prayer for the Lord to help and guide me and He did help me as I realized that the process was almost like doing it upside down and backwards since by the stitches it looked like the grandmother may have been left handed.

When I was finished I was glad she had used different shades of blue as most yarn can not be matched years later due to fading and dye lots expiring. The experience made me think about how many matters of the heart can not be fixed. Sure they may be patched up with different material to fill the hole but it will never be the original piece exactly. It also made me realize I can not always fix everything no matter how hard I try. The afghan, like people, can begin to unravel if not repaired and as much as Dave and I have tried to help people and pray for then some of them are still broken. Some have been healed, some have moved to heaven, some still need freedom, and some are left without a mom on mothers day. Some are still a mess and all I can do is all I can do and it's all the God wants me to do.

I am reminded of an illustration we had during a marriage conference. They took yellow play dough and blue play dough and they mixed it together about 2/3 of the way. Then they told us to pull it apart and completely separate the blue from the yellow. It was impossible. People's lives are so mixed up at times and even when you try to help them so many of them want more from you. It seems at times it is never enough, even though you feel you have layed down and poured out your life. I fixed the hole in the blanket today. I can't always fix the hole in peoples hearts but some of them...they really don't want you to or even God to. Thanks for letting me write this. I love you all! I believe I am hiding in the shadow of His wings and He is my defender."

An Alternative for Christians to Obamacare

July 2018
Another update to a popular blog post. Since the last update I have had an insurance agent approach me and join Christian Healthcare ministries because even he couldn't pass up this great program and money savings! I have also had another friend whose family are members of Christian Healthcare ministries and their child needed surgery and every bill was paid for! I recently looked at another program called Medi-Share. It works a bit different which some may prefer to Christian Healthcare ministries. Their website is here. Please note I do get a referral bonus if you join Medi-Share and my friend gets a referral bonus if you join through their link below.

(Photo credit : Rachel Talkington)

Oct 22,2016
An update to one of my most popular blog postings!

Last year I had a friend contact me wondering if I knew about any of the medical sharing programs like Christian Healthcare Ministries . I shared with him my experience and after research he and his family joined. I asked him how this year went and he said that they saved quite a bit of money on insurance and medical bills! I rejoiced with him about this praise report and was happy that I had helped him to save some money.

Like noticing these flowers, Christian Healthcare ministries was a gift that I appreciate.

Fall 2015

Lately I have friends, and friends of friends asking me personally or posting on social media trying to find an alternative to Obamacare. There are many reasons people are looking for solutions, so I have decided to post on my blog about it to help others who may want to know about alternatives to Obamacare such as the one I have been using for several years called Christian Healthcare Ministries (CHM).

Christian Healthcare Ministries is a widespread community of Christians that share medical bills by committing to give a certain amount every month that is used to pay for other members medical bills. My payment is currently $150 a month at the Gold level but they do have cheaper options available to those who wish to pay less. There is a $40 yearly fee for administration and an optional program you can add called Brother's Keeper for about $25 per quarter (this option is based on the needs present at the time so it varies. I think the lowest mine has been in 3 years is $4 and the highest $26). I highly recommend you get Brother's Keeper if you join CHM. The community also prays for others medical needs, bills, and sometimes send them cards of encouragement during times where they need a special pick-me-up.

Taking the leap of faith to do things differently and enjoy life journey.

For many years I was afraid to take the leap of faith to sign up for such a program as it is not insurance and therefore has no guarantee that your bills will be paid. I had been thinking about it though, doesn't it take faith to purchase insurance in the first place? Anyway, upon researching this through, as my health insurance premiums had became unaffordable for our budget, I discovered some friends or friends of friends that had used Christian Healthcare ministries with stunning results! My brother in laws Pastors wife over 30 years ago had cancer and he told us that every bill was paid for! In the last few years a dear friend of ours,who is a member of CHM, had an accident and needed surgery. He had that surgery and every bill was paid! Most recently I had a family member who was ill for months and they submitted the bills to CHM along with applying for discounts at the hospital where they had testing. The hospital gave them a discount and it was over $500! $500 is what CHM considered their responsibility personally for this incident so the leftover $500 was met by a discount!!!! This meant that there would be no out of pocket in the long run for them! I love that! In the past they had paid hundreds of dollars every month for insurance with a deductible of thousands of dollars and they got next to no benefit. They are thrilled with CHM and are so happy at all the money they have saved on insurance the last few years!
Click https://christianhealthcareministries.referralrock.com/l/CHM85731233/ they get a free month of CHM after you pay for your first 3 months, and you can do this with others for yourself as well once you join. I hope this will help many get the help they need at an amount they can afford. For information on how this meets Obamacare and also tax information see the CHM website here.

Dreams Come True and Miracles Happen

Over 20 years ago an endocrinologist told my husband and I you will never see a drug for the disease you have called Hypophosphatasia in your lifetime. Well we understood the Dr and what she told us was true based upon facts at the time but we chose to leave that office and pray for a miracle. We were asking that the impossible would become possible not just for my husbands sake but for others around the world that die or suffer from Hypophosphatasia on a daily basis. We had many family and friends who started this journey of prayer when my husband was born and many who have joined us throughout the journey of our lives or for just a season and we are truly grateful for their prayers, love, support, and for cheering us on!
This week not only did a miracle happen but a dream also came true. Several years ago I had a dream that my husband was in a children's hospital for a week and they were running many tests. At the end of the week they told us that next week they would start the treatment and as they left the room I asked, "What is the treatment?" There was no response. You know that feeling when you're reading a book and you get to a really great part so you want to read the next chapter but for some reason you can't? Well this dream was a great chapter and I thought it was so weird that it had to be God telling me something. Hold onto your faith...hope a little longer....pray and believe a bit more... I told a friend the dream and she commented on how strange it was. It was pretty strange in my mind but time went on and I found out that there was a drug trial. It started around the time I had the dream, only babies and children were primarily the ones being put on the drug, and it saved lives! I cried tears of joy when I saw the first pics and videos of babies and children whose lives had been improved by the drug now known as Strensiq by Alexion Pharma. This was a miracle that we had been praying for and what I believe my dream was about! This week the FDA approved the drug Strensiq for perinatal onset, infantile onset, and juvenile onset Hypophosphatasia. There are many pieces to the puzzle and people who contributed to research, testing, and many families who paid the ultimate sacrifice to keep trying for a treatment. Thank you just doesn't seem to do it justice but we are truly grateful for all things coming together that have brought us to this day. Today, Oct 30 is Hypophosphatasia awareness day. Thanks to Deborah Sittig of Soft Bones here is some information she shared about how to help us spread the word. Please feel free to share this post.

"Today is HPP Awareness Day!

HPP HEROES, UNITE!
Join the Uncommon Strength Global Mission

UNCOMMON STRENGTH CAMPAIGN
As a HPP Hero, your mission is simple – unite and inspire those impacted by hypophosphatasia (HPP) around the globe and raise global awareness for HPP.

Living with or caring for someone with HPP isn’t always easy. It demands a great deal of courage and inner strength day in and day out. It also takes a bold unified effort.

On HPP Awareness Day (October 30th), we’re encouraging the world to join the fight. Whether it’s a caregiver, a friend, a family member, a co-worker, or your child’s teacher, let them know about this important cause. Together we can have a huge impact. HPP Heroes, Unite!

WAYS YOU CAN TAKE ACTION
Ø Support HPP advocacy organizations around the globe by signing their international petition to officially recognize October 30th as Hypophosphatasia Awareness Day.
Ø Encourage friends and family members to visit the Uncommon Strength campaign website – www.EveryDayWithHPP.com – and join the HPP Hero community.
Ø Build your own personal HPP Hero on www.EveryDayWithHPP.com and encourage your friends and family members to do the same.

Visit our Soft Bones website for more information www.SoftBones.org

www.EveryDayWithHPP.com"

Saving on Supplements!

So lately I have been thinking about different ways I save money and how many of my friends I have shared these with but many I have not sooo here I am to help save you money whether it benefits me or not. ;)
     I have a couple of places that I order supplements online that save me quite a bit. One is www.pureformulas.com They have fast free shipping, the same day if ordered by 5pm EST, they have free returns, and their products are 100% guaranteed.I like that they carry quality brands such as Apex Energetics and Pure Encapsulations. They have a special that if you use my code RFYJXK you will save $10 off a $50 order.( I will save $10 off an order as well if you do but I would tell you about them even if I did not lol)
     Another place I save is www.puritan.com They have free shipping in the US and I like their price on the NOW brand of progesterone cream http://search.puritan.com/search?view=grid&w=Now+Progesterone+Cream&x=0&y=0 Check them out! More to come on saving on supplements in my next post.
My favorite website to order supplements and natural foods is www.vitacost.com If you use this code http://goo.gl/GnpWDr you will save $10 and so will I! I started ordering from here many years ago and found a supplement that was about $20 cheaper than I was paying!!!!! I have been saving money ever since! Their Vitacost brand is also been great as well on most products I have ordered. I love their warranty of money back or replace the product on anything they carry if you don't like it. I believe shipping is free with an order of $49 or more and it generally arrives in less than a week.
Happy savings on your healthy supplements! <3

Diapers,Deals, and Charity!

So my friend Maggie Nowland asked how to save on diapers because they buy them every month for the food pantry. Well to Maggie all the rest of you out there that buy diapers for your baby or to donate to charity this one is for you!

First you gotta find out who has diapers on sale and then match that up with manufacturers coupons from the Sunday newspaper. So for example CVS has Pampers on sale this week 2 for $19.There are manufacturer coupons out there for Pampers 10-30-2011 newspaper Proctor and Gamble insert has a $2,00 off 2 packages and 11-27-2011 Proctor and Gamble insert has $1.00 off 2 packages of Pampers coupons.

Now if you do not have the paper or the coupons ask around. Your family, friends, neighbors, Facebook friends or church may have some. I have posted before on Facebook that I was looking for a certain coupon or insert and have had people more than willing to give them to me. Also my church has a box that anyone can donate coupons or receive them. It's a great idea that has helped many thanks to my friend Angee Perry!

Now coupons are $ that you don't have to spend out of your own pocket so find some.: ) To sweet this deal CVS has included Pampers with certain items this week that if you purchase a total of $30 or more then they will give you a gift card for $10. I called my local CVS and they said one of those is a prepaid VISA! Now I have not done this deal yet but they told me you can do this deal 5 times and so that would mean 5 $10 VISA gift cards. I would call the store first to see how their supply is on these before I went if you want to buy a lot of these. Anyway if the Visa can be used after the first transaction I would use it on the second so that you reduce your out of pocket expense.

So it would look like this:

4 packages of Pampers for $36 + tax = a $10 Visa

So after you use the Visa in the future you only have $26 + tax in 4 packages of diapers or about $6.50+tax a pack. Not bad huh?

Now CVS also has a loyalty card that you need to scan to get this deal and it will also keep track of how many packages you buy this year and for every 6 packages of a certain brand you buy they will reward you in a day or 2 when you stop back in with a coupon for a 7^th package of diapers for free! They have a machine that looks like an ATM at most of the stores. Scan your card there and that coupon should print along with any others they have for you. I hope this helps and I hope lots of you save your coupons to help your local food pantry and my friend Maggie Nowland. Or better yet go pick up some diapers yourself to donate.: )

Blessings,

Sharon

The Most Wonderful Day of the Year...for Couponers!!!

If you know me you know I love to save money and a few years ago I discovered that I could save a lot of it on Thanksgiving. That's right, Thanksgiving. I know when some stores started being open on that day over 10 years ago I said I would never shop then.

Well after so many years I realized that if they were gonna be open I might as well enjoy the savings and I discovered a store where I could save $70-$150 just by going and shopping there on Thanksgiving morning with some preparation from one of my favorite couponing websites www.couponmom.com.

At the website they match up the sales ad with the manufacturers coupons that are out for the same product to maximize your savings and when I realized that Thanksgiving was the biggest day of the year for this I went out to discover what all the fuss was about in 2009. Well I went to CVS! That's right CVS and low and behold no one else was there at 8am sooooooo I was free to pick up lots of merchandise for an amazing amount of savings!

Since then more people have been learning about couponing and this Thanksgiving I had a little company but not much. I am posting pictures of all the things that I bought that day and my receipt totals and savings just to prove to you that yes you can get free products from the stores like candy bars, toothbrushes, toothpaste, and Advil. Some times you can even make money off the deal. If it's free generally it's for me and if I can make something off of it all then that's even better.

So when I went to CVS on Thanksgiving day I was armed with my CVS card (if you don't have one get one) $10 in extra bucks ( these are like store credit I have from an earlier purchase) a $5 off a $25 purchase coupon and a $6 off a $30 purchase coupon and a stack of manufacturers coupons I had matched up with what was on sale for that day to maximize my savings. I had told my husband it was going to be epic because I had never had a $5 off $25 and a $6 off of $30 at the same time that I was able to use in the same day.

$163.21 is the amount that my register receipt said I saved and I only spent $15.06 and I walked out with about $20.00 in extra bucks ( more store credit) and of course all the merchadise in my picture which included the following:

1 Snuggie
1 Conair Hair dryer
2 Rice Chex
1 LA Looks Hair Gel
1 Quantum Finish Powerballs
2 Wet n Wild Nail Sets
1 Phillips Earbuds
2 Hershey's drops
2 Listerine Pocker Packs
2 Snickers Peanut Butter Bars
2 Twix Bars
1 Balance Bar
1 Be Koool
1 Bayer Advanced
1 CVS Dental Flossers
1 Colgate Total
1 Starbucks Double Shot
1 Fiber One Brownies
1 Carmex
1 Kleenex Cool Touch
1 Excedrin Pm
1 Excedrin Extra Strength
1 Advil
1 CVS AA Alkaline
1 Cepacol
2 Gum toothbrushes with bonus travel caps
1 Irish Spring Deodorant
1 Pepto Bismol
1 Soft Lips
1 Oral-B Vitality
2 Caramels

So all in all I consider it an excellent day when I walk out with more extra bucks in my hand than the amount of money I spent. : ) For that I am truly thankful!

Sharon

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Monday, September 26, 2016

Saturday, September 24, 2016