We are so sorry to hear of your loved one’s illness!

 We are so sorry to hear of your loved one’s illness! Please know first and foremost we are lifting them, you, and your family up in prayer.

                                            

                                                  PC Sharon Talkington

 

Second, I see there is a GoFundMe set up. Please make sure they talk to a social worker and apply for uncompensated care. It can discount your hospital bill up to 100% and sometimes doctors will match that discount. GoFundMe can be a blessing but if the person is on a government program such as Medicaid or SSI, it can get complicated.

 

Here is an article with more information, in case you are interested.

https://helphopelive.org/is-fundraising-taxable-personal-income/

                                         

                                                      PC Sue Krug

 

I would encourage you or someone else in the family to check out setting up a Help Hope Live campaign. Help Hope Live is a trusted medical fundraising nonprofit that provides all of the support necessary to be successful in your fundraising. Because it is a nonprofit, donations can be tax deductible and you are also eligible to receive matching gifts from companies, which can add up quickly.

 

We have a campaign for Dave for unpaid medical needs and it has been a major blessing! We can’t say enough good things about Help Hope Live!

                                  

                                                  PC Sharon Talkington

 

Lastly, whether you start a Help Hope Live campaign or not, they have resource guides that are extensive to help you find resources in this time. Here is a link: 

https://helphopelive.s3.amazonaws.com/uploads/2020/07/HHL-Illness-Resources.pdf

 

 

 

                                   La Jolla Soft Bones National Meeting 

                                           

                                                        Ready to fly to California! 

    How do you describe a rare disease patient meeting? Well, I had the opportunity to write a blog post on it two years ago (link here) and have found that it is always difficult to sum up the whole experience. As my husband Dave and I return from our third national meeting once again I am pondering what to tell others about the bond between hpp patients, families, loved ones and caregivers.

                                               

 Our friend Sue. I have learned so much from her about hpp! 

     They say when you find your tribe (community, family) to love them hard. We are doing the best we can to walk that out step by step and day by day. When we watch new patients at meetings we are delighted to connect, listen to their stories and answer any questions they have. They say everyone needs to be fully loved and fully known. I think that’s a huge part of it. They feel more fully known. We feel more fully known. Others who we sit across the table from hear us and say yes that’s how I feel too! Do you know that I’ve come to fully realize? Knowing and understanding why there is pain, why there is difficulty, and what can be done about it is validating and empowering as well as comforting! We may not understand the whys of everything but understanding one or more new facets about your diagnosis can be a comfort. I’m not crazy, it’s not all in my head, there is a reason why I am experiencing this. Then if there is treatment you can hear about and see others that are on treatment and those who are not, weigh out the benefits and risks to make an informed decision about your available options. These moments remind me of a quote from a favorite show of mine, Call the Midwife:

                                                “None of us have ever truly walked this way before

                                                 But if there is no map, no route, no arrowhead to follow

                                                 There is sometimes a star.

                                                 An we do not make our way without companions

                                                 As the road unfolds, we travel side by side

                                                 And share the shift from darkness into light”

     

                                                    Our friend Sally and I on break! She's a gem!

     There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings. 

      Many sacrifice their money to make that one trip, pain in their bodies, perhaps risk a fracture to make that connection, get that education, and be empowered to advocate for yourself and others in your community. Forever changed, never the same, and encouraged to grow to your full potential. Do it afraid, go to a meeting, make the connections, be vulnerable and tell your story, fuel your tank for the journey. It’s not a sprint it’s a marathon. Pace yourself, and keep this quote in your heart:

“Sometimes life is shattered in an instant and all our certainties are savagely stripped away. Questions become our weapons, answers are our only hope. Without them fear engulfs us. Love and each other can be all we have

Love can not always save us but it can be the reason we fight 

Then love becomes the wound that bleeds the space to be filled 

The emptiness that echoes into silence”

-Call the Midwife

                                                           Copyright SHARONNMYLIFE  INC 2019 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

Dave's Van Vision!!!

This Honda Odyssey is a possibility for Dave to consider.

Recently we went to Columbus Mobility Specialist to check out some of their vans and get some more information about options for Dave. When you are shopping for a handicap van you need to decide on a make and model of van and then what adaptations you want to have made on the van. We have spent hours and hours looking online but it was time to look in person. There is a lot to learn and we so appreciate the journey we are on. My Dad went along with us to help us with the mechanics end and we felt like it was time for us to start getting our hands on the product to see what feels right to us. 

Here is one we looked at.

The salesman showing us a handicap accessible van.

This model seemed to be higher off the ground for a handicap minivan than the others we have looked at. There was plenty of room to enter with the wheelchair and turn around which was very nice. There was no carpet on the floor but had the rubberized flooring instead. It also had key fob entry and a bench back seat.

Dave and Dad pondering this possibility.

This was a good stop on our journey and we look forward to the next one as we search for Daves handicap van. Our goal of $65000 was confirmed again at this dealership. We are currently at $5780. Many thanks to our family and friend for helping to grow our Help Hope Live Fund to help us purchase that new van soon!  If you would like to give or help with a fundraiser please connect through this link. 

HelpHopeLive David D Talkington Fund for Van and Unpaid Medical Bills

Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

             Soft Bones Region Lead Training & Carlos Bakery AKA The Cake Boss

                                                                    Here I am a Region Lead with Soft Bones
                                                                            Photo Credit Rebekah Talkington


 Recently, I was honored to accept a Region Lead position with Soft Bones US Hypophosphatasia Foundation. This organization has helped so many with hypophosphatasia through education, connection, and research. David, my husband, has hypophosphatasia (HPP) and I remember the day about ten years ago when a doctor told us that he had one other patient with hpp and we were so excited and asked if they could arrange a meeting. They said maybe but unfortunately it never happened.

     Most rare disease patients these days are meeting through social media groups such as Facebook and it is wonderful that there are now ways of reaching out to others who have the same struggles. Just this last summer, my family discovered that meeting in person others who share similar experiences is such a powerful experience that patients want to do it over and over again once they start. It's so amazing to be rare and meet another person who is like you. It's empowering, it's validating, you have found your tribe, your family, that you never knew was out there before. Part of what I will be doing as a region lead is to help facilitate those meetings in my area, and I'm so excited to be apart of such a wonderful journey.
           

                                              Out to dinner with fellow Region Lead Dawn Gullett. 
                                                                            Photo Credit Jonathan Gullett

      To make sure I was prepared, I went to New Jersey for some training with other region leads from all over the country who bravely said yes to volunteer our time and help Soft Bones and patients connect so that those struggling know they are not alone. This was a great time of teaching, learning, and empowering connection as we saw old friends we have met before, brand new friends, and some friends we have "met online" but had yet to meet face-to-face. This time definitely makes me think of the saying "Make new friends but keep the old, one is silver and the other is gold."

                                                       I can't believe I'm at Carlos Bakery!

     After training we went out to an amazing dinner and after dinner as we were walking out to catch the shuttle back to the hotel someone said "Do you want to come with us to the Cake Boss place? It's about a five minute walk from here." What?????? The Cake Boss place is 5 minutes walk from here???? No way!!!!! Our family loves to watch the show and my husband has been saying we should go there someday! Well, I didn't wear the right shoes for this but I have to go because my husband couldn't make this trip in the middle of the winter. So we walked down the street to the cake boss place, Carlos Bakery, and there we all were for a sweet treat.

Photo Credit Jenna Aoga

     When we got there I was in awe! Then they asked me would you want to take Dave something? My first though was, what could I fly back with? We got some pics and I begged everyone please don't post this to Facebook yet. I picked out a brownie to take home to my sweet husband and took pics with sweet friends. I tucked that brownie in and brought it home to my hubby the next day and he split it with me and our two sweet daughters! They couldn't believe it! I think our daughters words were "Shut up! No way you went to Carlos Bakery!" Yes, yes, I did thanks to a trip I said yes to and some new friends who said lets go!

                                                   My favorite cake they had with Calla Lillies!

      Hey Carlos Bakery! Thanks for being awesome! I need to do a fundraiser this year as a region lead for Soft Bones. Would you consider donating or partnering with us to fight hypophosphatasia www.softbones.org ? Either way I hope to come back to one of your locations some day with my husband and daughters to get our first canoli together! Oh and the Calla Lilly cake is one of my favorites you had on display! Truly amazing! Thanks Soft Bones for the training and opportunity. It lead to a dream fulfilled in part for our family!

                                                I need to come back with the family for a cannoli!

Copyright SHARONNMYLIFE  INC 2018 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

Spring!!!! We made it!!!!

   

Photo Credit: Rachel Talkington

Ah Spring you have finally arrived!!! We have longed to see you come and give way to summer!

     We live in the state of Ohio, in the United States, and a few years ago winter became much more difficult after my husband broke two femurs in 6 months! Although the snow is white and beautiful and the ice can be pretty from the inside of the house it came to have another side for us. Weather changes meant increased pain with my husbands HPP, overall fatigue, and discomfort. Riding that roller coaster is not fun nor is it seen as something to look forward to. I have realized in the last few years in February I would start thinking "come on March". If we can just get to March I believe we will make it. Well we did it again.
     

Photo Credit: Rachel Talkington

       Surprisingly this winter we didn't have to shovel as much snow and put out as much salt and calcium to melt the ice off the deck, ramp, and driveway for safety for Dave. For this we are very grateful. This year was improved also due to medical treatment as well for Dave and that was a blessing as it did help decrease some of his pain and increase his mobility.

                                                              Photo Credit:Rachel Talkington

     We also received notice that another year of treatment has been approved for Dave and that is something we fought long and hard for last winter. This winter it was pretty seamless, is was wonderful to have breakthrough in an areas that before seemed like as cold and harsh as a winters wind. Like night and day! Soooo grateful!!!

                                                             Photo Credit:Rachel Talkington

     For those who have asked you can access the update on Dave through his HopeHelpLive link. Thanks to all who have helped us with that project!

Copyright SHARONNMYLIFE  INC 2017 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

David Needs Your Help to Get a Handicap Van!

12/2016
     Some call it faith, some call it positive thoughts, and some call it positive confession but I am here to tell you we are getting a new Handicap van. How? Well let me tell you about our options.

This is a possibility for David's new handicap van. 

    First of all  our current handicap accessible van is a sweet tan colored Dodge named Goldie. Goldie came to us in 2009 when we desperately needed her. The year prior to this my husband Dave had broken both of his femurs within 6 months of each other. After this occurred he had to be in a power wheelchair all the time and we needed a way to transport that chair wherever he needed to go. Unfortunately, there are no government programs for those who are on Social Security disability to transport a power wheelchair when people need to go to other places than their home. I know it's hard for some of you to believe, but it's true and it can keep those who are disabled home-bound for months at a time.Family and friends prayed with us and looked for a handicap van, and eventually we found a used one with low milage on it. Goldie was given to us after many months of friends and family fixing it up to where the mini vans ramp would deploy properly and a new seat was put in for Dave so he could turn, transfer, and drive. We didn't complain or push for the van to be finished sooner during that time, we just prayed and trusted God had a plan and indeed He did.

                                        Goldie (AKA Captain Caveman), our current handicap van.

     Fast forward to the last few years where friends, family, our pastor, and mechanic have begun to encourage us to look for a new van. They would point this out in different ways like, "You know the van won't last forever," and "you're going to need to replace that some day." This was very kind of them, honestly, but we don't have the money to purchase one and finding an affordable van that has all of the necessities that meet my husband needs is nearly impossible. While I have looked into it, I've not been able to find grant money for one either and if you know of grant money, a program, or someone who is giving away a handicap van please contact me at sharonnmylife@gmail.com. We need the van to meet some necessary qualifications for my husband David's needs and of course pass our mechanics inspection.

      As a result of our search, however, we've found a few ways we may be able to get the help we need. If you would like to help us acquire a handicap van and meet any other medical bills for David we have set up a HelpHopeLive campaign. HelpHOPELive is a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. You can give through this link to help David and to top it all off it's tax deductible. If you work for a company that does matched giving HelpHopeLive can receive that as well for David! All checks should be made out to HelpHopeLive with the memo section noting "In Honor of David D. Talkington".

Visit this link to donate or mail to:

HelpHOPELive 

2 Radnor Corporate Center 

100 Matsonford Road
Suite 100
Radnor, PA 19087

     The other possibility we have found in this process that could help us buy a handicap van is called a Stable account . Stable accounts are tax free savings plans for disability related expenses where you can save and invest without losing needs based benefits. The cool thing is that we have opened one up for my husband and we, our family, friends, and even companies can contribute to help us get the van or other things that my husband may need but would not be covered by our income or other programs. We have started the account out with $50 ourselves. My husband can receive up to $14,000 a year in this account. We would appreciate it if you would consider giving toward that goal by Dec 31,2016! Then early in 2017 our goal is to raise another $14,000 in this account. That sounds like a lot of money but  the new handicap vans we have been looking at that would suit my husband's needs average about $60,000. Do I believe in miracles? Yes I do!

                                                              My husband David Talkington. <3

Please consider giving into my husbands Stable account. If you do give please respond to the email we have sent you from Stable or send me your email address to sharonnmylife@gmail.com so I can send you the link. The gifts to Stable accounts are not tax deductible and are not compatible with matching gifts from employers. Thank you so much for reading this, considering it, and praying that this need will be met. I will update with another post when we receive the van or when the Stable account reaches $14,000 for the calendar year. Please feel free to share this blog post!

                                        Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.