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.

                                              Happy Mother's Day Naomi!

      My Mom is an amazing mother and I wish her a happy Mothers day today but this blog entry is about my Mother-in-law or what some call their Mother-in-love now.
     I met her a little less than a year before I married my husband and she was so kind to me. I believe she knew that her days with her son single were numbered and she treasured every moment with him that she could. I didn’t understand that at the time, but as time has rolled on and I have matured and understand a little more of life and my husband’s story, it’s starting to all make sense.
     Naomi Mullins Talkington was one brave woman. She was strong, courageous, loving and a fighter when it came to getting the medical care for her son that she desperately loved, my future husband. I can’t thank her enough! I don’t know the full story but in the last few years a few more pieces of the puzzle began to unfurl as treatment for hpp was approved and we began a journey to find out could adults get this treatment? What would it take to get this treatment?
                                   

                                                                   Dave's Amazing Mom Naomi!
                                               
     Soon we found out that it would take proof that you had hpp as a child prior to age 18 years old. Well at first I thought we don’t have anything like that as my husband’s pediatric records were destroyed before we could request them shortly after we were married. We were young and Naomi encouraged us to call and get them and they said they were gone. The whole office records had been destroyed. We were disappointed but had no idea what relevance it could be in the future such as we began to realize in the fall of 2015.
Then I remembered something. After Naomi passed my sister in law, who is a nurse, handed me a box. She had graciously done some initial sorting of things in the house, since we lived out of town, and said these were some of David’s things.I can’t thank her enough for keeping these things and passing them onto us! Honesty they were still in the box and I thought “where is that box?” We had moved several times and it is nothing short of a miracle that we still had it!
    
      I found the box and began to go through it. From his birth announcement, where it listed his very small weight and her reassurance that he would be fine, to cards welcoming him as a baby it was there in the box. Then there were the letters she had written to doctors and doctors had written back to her. Before the internet in a time were very little was known this mother was leaving no stone unturned to help her child receive the best of care as far as she could see and find! She was writing researchers that were on the front lines of hypophosphatasia and how do we treat it. Her tenacity was persistent and she was resilient and firm in what they could do and what boundaries she drew to care for her precious son. She was a trailblazer in advocacy and the letters and documents she so preciously saved I don’t think she ever dreamed they would be an inheritance key to lead to treatment for her precious son once she was long gone.
So today I honor my mother in love for saving my husbands life and health through her foresight to connect and correspond with some of the leading doctors and researchers of his childhood! Happy Mothers Day in heaven Naomi! I love you!
     
                                    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.

   

                        Why Would You Attend a Rare Disease Patient Meeting?

     In the summer of 2017 our family made the first journey to Kansas City to attend a national patient meeting for Soft Bones US Hypophosphatasia Foundation and it was incredible!!! There were so many things to love on this journey.

Kansas City Soft Bones Meeting 2017 here we come!

     First of all my husband Dave has not been able to travel much long distances due to hpp. Now we found ourselves being able to travel due to hpp for this meeting in Kansas City!!! I was so happy to have my husband by my side for the first time in over 20 years flying to a destination!!! Yes it was a big deal as we never thought he would be able to do that again. He was absolutely thrilled!!!!

So our two lovely daughters joined us to help us learn to travel with the wheelchair, luggage, and all those bags! We flew SouthWest and greatly appreciated their accommodating David's abilities at the time including wheeling him onto the plane in his own wheelchair so he only had to get up and take a couple of steps with his cane and sit in the front row. I was also allowed to sit right there with him. It was so sweet to hold hands with my sweetheart on the flight. He is such a people person and loved making friends along the way while we traveled. We were even honored to sit next to a famous person on one of our flights, but more about that in another blog post. 

     So we made it through TSA, learned the value of having a person to push you through the airport, and appreciated the fact that we could be traveling all together in this season of our lives. We had so much to look forward to such as learning more about hpp, meeting people we had only chatted with on social media, spoken to on the phone, and to see the many patients and families who are being positively impacted by treatment for hypophosphatasia. 

Traveling with my sweetheart! <3

     As we checked into the hotel it was surreal as we began to meet others that were there for the meeting. Honestly so many of these people feel like family to us. Some we have met before and others we meet and the connection is like you have known each other all of your life. I found myself having goosebumps on my arms over and over again and thinking this is absolutely incredible. We would see children that their parents had posted pics or video on social media and they had been unable to walk and now they are. They were not expected to live and there they were. There was running and dancing and playing. There was a friend who was walking with a cane that could not do that before. I felt like everywhere I was looking there were miracles. I cried but the tears were tears of joy. My husband got to meet the first person that I ever called on the phone with hpp. He got to meet others that I have talked to and tried to help at times. Soft Bones provided a travel grant for us to come and friends helped us with the rest. We learned tons from other patients as well a doctor who spoke, a nutritionist, Deborah Fowler who shared Soft Bones vision, and it was an absolute honor to be there. 

Falling in love with travel again and patient meetings. <3

After this meeting, and as a result of us learning, Dave and I have been honored to attend a couple of Stand with HPP meetings as well and I think some of the benefits of attending either type of meeting are the following. 

1. Connection with other patients who get it! They understand some or all of the difficulties of your hpp journey.

2. Those patients are perhaps now new friends and family that you will journey with for the rest of your life.

3. You can share tips of how you managed and coped with hpp and help someone perhaps not have to go through all the difficulties you have.

4. Learn about hpp from healthcare practitioners.

5. Learn about the latest in hpp research.

6. Learn about studies in hpp that you may chose to participate in.

7. Network to help all with hpp find treatment and ultimately a cure.

Patient meetings are a game changer in many patients journeys find one and make it a priority to attend. Clear your calendar as this is worth it!

                                                      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.

   

                                               Watching Dave walk again!!!
                                                 

Dave's sister Ann and brother in law Gary with us. 

     So we were recently honored to be speaking at Stand with HPP Pittsburgh and Dave's sister and brother in law joined us for the meeting. They arrived early for lunch and Dave decided to show them a few new things he could do since starting treatment and a lot of physical therapy over 2 and 1/2 years. So he got up and began to walk around with his cane and they were so surprised his sister asked if she could take a video. Well she did and during the video Dave began to exceed her expectations and you can hear the tears of pure joy in the background. Lots of hard work in pt, treatment that took tons of things coming together to create, manufacture, bring to market and eventually Dave to take, lots of faith and courage on his and our part to walk out this journey, as well as friends family and an hpp community cheering us on and praying for us one step at a time. So this is a bit of the story behind the video. Dave has worked so hard and has new walking stills but for longer distances he will still need his power chair as this is a treatment and not a cure. We need the van by winter. So if you would like to help us please click this link. It's tax deductible and they also participate in employee matched gifts. Please share with your friends who may be looking for end of the year tax deductions. Thank you all for your love and support! We feel it! <3

                                               

                                                      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.

   

                                                     

     URGENT! Dave and the Handicap Van 

     Have you ever run a marathon? If you haven’t have you ever had to persevere through challenging circumstances for an extended period of time? Well that has been Daves’s life with hypophosphatasia (hpp). Hpp is not a 50 yard dash, it’s a marathon. You have to train with physical therapy, do exercises, take breaks, rest, get good nutrition, medical care, tests, medicine, procedures, even surgeries sometimes, and start it all over again. At times it can be very exhausting and discouraging. Rare diseases are like that in that they are challenging, stretching, and life long. 

                                                   A recent accomplishment in physical therapy for Dave!!!

                                                         

      We have been very encouraged with the treatment and physical therapy Dave has been receiving. It has helped him to be able to travel and share his hpp story with others who also have hpp, their loved ones, and care givers. Sharing your story can be encouraging to others that they are not alone, someone else understands my struggles, if Dave can live a fulfilling life I can too! Everyone has challenges in life, one of Daves happens to be hpp. 

                                             

        A recent opportunity for Dave to share his hpp story with others to bring hope, education, and connection.

      Another marathon we have been running has been raising money for a new handicapped van purchase.The grant we applied for had too many applicants and they could not help us. We would like to thank Chive Charities for even accepting our application for consideration and we are thankful for all the can help they have provided others with rare diseases, veterans, first responders, and special education this year! 

                                                                

                                               Dave's current van that needs replace by this winter. 

      Here’s the run down of where we are at now: Through Daves Help Hope Live account we have raised $ 6,926. Through Daves Stable account we have raised $9,250. Our goal is to raise $75000 by winter to purchase a new handicapped van with all the features Dave requires. Thanks to all who have helped us so far! Please consider, like, share, and give. Gifts to Help Hope Live are tax deductible and they also participate in companies matching gifts. Time is running out so whatever funds we raise will be used to purchase a new or used van by winter!

                                                          One possibility for a new van for Dave.

     Last, but certainly not least, hpp awareness day is Oct 30. If you know of someone who is fracturing bones and they don’t know why ask their doctor to check their alp. It’s a routine blood test most people have had. If it’s low alp it might be hpp. To help us fight hpp please consider a gift to www.SoftBones.org.

                                

Do you break bones often? What’s your alp? Is it hpp? 

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.

                                    David Talkington and Van update

     

Dave in our current van "Captain Cave Man" aka "Goldie"

      Well this spring came with lots of weather and changes. Dave is working hard in physical therapy for neck range of motion and it seems to be working. We are thankful he has this opportunity and that he is making such great progress.

             

     Earlier this month we started a new season in life. We were honored to be sharing our hpp (hypophosphatasia) story of hope with others in the hpp community. Our heart is to encourage others that life with hpp is worth living even though there are some adjustments and bumps in the road to negotiate at times that are different from other's life challenges. I can't tell you how encouraging it is to share your story with others and listen to others share theirs. This is something we can do to give back to the community that has given so much to cheer us on and we are honored to do so!

                                                     

  Photo Credit- Yudelkis Exposito Ledesma 

                                                                     

     Many of you have asked for an update on the van and the fundraising for the new one. Since our last update Worth While Life  had a bowling fundraiser and raised $7000 that they deposited in Dave's Stable account for the van! We also received an anonymous check for $2500 this week for the van to the Stable account!!! We are so thankful for the love and kindness that has been poured out toward us! It has been truly humbling. The Help Hope Live account has grown to over $6030 as of today!!!  Words can not express how thankful we are to the many family, friends, and others we have not met yet that have given towards this project. Another thing you can do is share our story or consider a fundraiser to help us reach our goal. Just contact me if you are interested.

                                                   

So thankful for our family and how supportive they are! Sign by Kim Justice of Simply Sisters

       Our latest step is to apply for a grant to help with the van since, as you can see, this is a large project. We finally found a grant that could fit but it takes months for them to process to see if Dave qualifies. We were able to submit this application yesterday and couldn't be more excited. In the meantime we continue to share the Help Hope Live website for any who would like to donate financially and follow our progress. It is tax deductible, which is a huge bonus! They also do matching funds through participating companies.The website also has info for sending checks as well if that is what you prefer. We appreciate all who are praying, sending positive thoughts, and cheering us on in this marathon project that we pray will soon be accomplished as our other van is getting pretty tired. We are thankful for our old van but our season with it is coming to an end soon and we are looking forward to the huge blessing that our new van will be.

                                                 

Dave driving to his next destination! This is a great new season for us! 

June 2018

                                                     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 HPP Advocacy: It's All About Family

Soft Bones HPP Advocacy: It's All About Family

     Hello everyone,my name is Sharon Talkington and my husband Dave has Hypophosphatasia. He and our family have paid a price in our HPP journey through hours of hospital visits and years of patiently studying this disease in every day. We've made it through hospital trips for broken bones that we have no idea how he fractured,  repeatedly requesting doctors look up Hypophosphatasia, and asking them to do some X-rays when they don't have a clue how to handle Dave's case. These experiences and more have all been par for the course in our HPP journey. Our daughters have joined us in that journey by caring for Dad on bad days, educating doctors about HPP, and helping him to get in the right position for x-rays because the techs don't realize the severity of his condition.

     In reality, Dave has been educating people his whole life about HPP by example and word of mouth. As we've been married, I've gradually joined him as I came to realize how important understanding HPP was for us and especially in the last few years through the internet, searching medical journals, as well as connecting with Soft Bones through their website, Facebook page, and groups I have learned a lot. Our daughters and Dave joke about the fact that many women are reading magazines but I am reading yet another medical journal.
     Our daughter Rebekah joined us in this journey primarily in 2008 when we discovered Dave broke both femurs 6 months apart. The first femur break we waited 8 hours to get into an ER room to be seen because we needed to go to a hospital that might have a clue what to do with him. I was totally exhausted when X-ray time came and Rebekah took over advocating for what treatment and accommodations he needed for the X-rays. She also went to great lengths in driving slow enough for the bumps on the highway as well as caring for her Dad at home the next day while I took her sister to the ER because she was sick!

                                                 Bending over backwards to advocate for HPP. 
                                         The shirt says "We are stronger in the places where we've been broken."

     Rebekah also joined me in attending ASBMR last September to advocate for HPP with Soft Bones. She was a part of the technology information that helped Soft Bones go on Facebook live the first two times in it's history! Such exciting times! Rebekah also went for coffee and food when others were volunteering at the booth and couldn't get away. She always has a heart to help and be a part of the team whatever that looks like.

                                                            Flying to Atlanta for ASBMR

     Rachel has joined her sister in advocating for HPP with social media. She is probably best known for her Pinterest Board for Soft Bones Hypophosphatasia which has almost 200 pins currently! Both of our daughters have extensive knowledge about blogging, hash tagging, and social media and have advised me about quite a bit on social media in the last few months. They helped me learn to encourage others with the knowledge of how to hash tag for Soft Bones and HPP as well as learning how to use Facebook, Twitter, and Instagram. Rachel also helps with Dave's care on rough days and she has her Dad's sense of humor as well as gift to laugh and make him laugh. When Rachel is present there is joy in the house.

     Our daughters are some of the first people to advise others on health care issues around them, jump in when there is an emergency and instruct others what to do when their loved one is in the ER or the hospital. This is because we all believe that bringing purpose out of our pain is part of what makes this HPP journey worth it. It is so amazing to be able to connect with others around the globe to inform them about HPP and what they can do to treat their disease or symptoms depending upon where they're at on the global map. Soft Bones has been a huge part of our journey and we look forward to working with them more in the next season of our lives.

                                        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.