CRPS Awareness Day

Today’s blog post is going to be a little different than our usual traveling and having fun posts but it deals with being a mom and with November 4th. My son Jason is 15 years old and is a typical teenager with the attitude and not wanting to hang out with his mom. But he is also a very strong and brave person. He’s been diagnosed with Asthma, Costochondritis and Hemiplegic Migraine Syndrome along with one more condition. The last condition he was diagnosed with is the most painful chronic pain condition known to man. Jason was diagnosed almost 2 years ago with Complex Regional Pain Syndrome I or CRPS. Just looking at him, you would never think that anything is wrong with him or that he spent months in horrible pain and now has severe weakness in his left hand. November 4th is CRPS Awareness and Wear Orange Day to bring awareness to this little known condition.

 

Complex Regional Pain Syndrome can develop from illness or injury but there is no known answer to why some people get this and some people don’t from the same illnesses or injuries. Type 1 is from an injury or illness that didn’t directly damage the nerves in your limb. Type 2 is from direct never damage. It is also known as the suicide condition as there is no known cure for it and many treatments to help the pain and other symptoms don’t help for long. Some sufferers have also willingly amputated their limbs to get some relief. CRPS affects the nervous system through the entire body, it can start in one part of your body and spread without rhyme or reason to any other part of the body. While medical documents state that the average age of diagnosis is 42, many are children and the youngest that has been diagnosed was just 18 months old. CRPS is also known as Reflex Sympathetic Dystrophy Syndrome (RDS), Reflex Neurovascular Dystrophy (RND) and Amplified Musculoskeletal Pain Syndrome (AMPS).

Some of the symptoms for CRPS are burning or throbbing pain in the affected area, sensitivity to touch or temperature, swelling, changes in skin color and texture, joint stiffness, muscle spasms and weakness, decreased ability to move or use the affected area, muscle atrophy, nail and hair changes including loss of, and changing in how you process the temperature for instance Jason feels cold when the rest of us are saying it’s hot inside. He has the skin color change, muscle weakness, sensitivity to touch and burning/throbbing pain in his left wrist and hand. Symptoms change from person to person and no two people will be affected the same way.

Jason broke his wrist during gym class in January 2017. After the 6 weeks of healing and x-rays that showed the bone was healed, he still had horrible pain. We saw our family doctor, a sport medicine specialist, an orthopedist, and finally a rheumatologist between March 2017 and January 2018. The rheumatologist was the one who finally figured out what was wrong with him. While there are many different treatments, Jason’s started with more x-rays and an EMG test (electromyography) which measures the muscle response to the nerve’s stimulation. Thankfully he passed so there is no nerve damage at the moment. He was then send to physical therapy which helped a lot with the pain. He sees a rheumatologist every 6 months to check on his progress. Another great thing that helped with his progress was belonging to a group called the Ferocious Fighters, a group for children and their parents that have been diagnosed with this monster of a condition. They sent him a care package and have sent several more letters since we joined them. Please be sure to check them out on Facebook and at their website https://www.ferociousfighters.org. If you feel moved at all to donate, all donations go to help provide care packages to kids going through this fight so they know they aren’t alone.

While this can be a rehabilitating condition, I’m so thankful that Jason is currently in a remission state. His pain is very minimal but it’s looking as he will never regain the strength in his hand that he once had. We can only hope that it stays this way for a long time but with CRPS, you can never tell. Any small injury can trigger the spread and my son loves playing sports so every line drive and run down between bases makes me catch my breathe. But I love how he won’t let his conditions stop him from living that is the biggest thing. He knows his limits but still tries with 100 percent of his heart. He inspires me.

If any of your children are fighting through a condition or illness, your child is a super star and you are a super star as well. Never give up the fight for answers for your child. CRPS has no known cure and hardly any research done on it as scientists and doctors don’t really understand it. But that doesn’t mean that we will stand by and let it take over our lives. Stand tall and stand proud CRPS fighter, you got this!!

Clip ‘N Climb Courage

Being the youngest of 5 children means my 6 year old son Chase gets to try so many new things and discover new places with his older brothers and sisters. His newest adventure was trying the Clip ‘N Climb at Spooky Nook Sports.

He’s never tried anything like this before but was so excited to try. His older brother was doing an event with the Young Marines at Spooky Nook so Chase and I decided to check it out. They have 10 climbing walls including a Leap of Faith (which he was too scared to try). Some were very hard but he tried, his favorite was this circle one

He made it almost to the top! So proud of my little man. We only did the half hour session but we will definitely be going back to have more fun! If you’re ever in Manheim Pennsylvania, be sure to stop by Spooky Nook Sports at 75 Champ Blvd. They offer so much from climbing, batting cages, a Ninja Warrior course and so much more!

2019 PA Family Expo

On Saturday, my youngest and I decided to check out the2019 PA Family Expo that was being held at Spooky Nook Sports Complex in Manheim Pennsylvania while his brother was participating in Young Marines. The PA Family Expo offered fun activities for the kids with trick or treating, bounce house, face painting and balloon animals; while different vendors and companies had tables set up for the parents ranging from schools and daycares to dentists to small businesses. They even offered giveaways and raffles that you could enter. Each child received a free cinch bag with goodies for coming there and a free ticket for the bounce house.

Chase loved the big bounce house that was set up as soon as you entered. It was sponsored by The Bull Guys.

There was also a table set up with Lego and other building items which Chase didn’t want to leave.

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He was constantly on the move, checking out each table and trick or treating along the way; it was so hard to take pictures with him. Some of the other vendors there were King’s Swings in Strasburg, Lapp’s Toys (amazing handmade wooden toys), Tiny Town (if you have little kids you have to check them out!), Usborne Books, Stampin’ Up, Boy Scouts, Michaels, The Property Sisters and so many more. We had a great time, I even won a gift basket! I never win anything so that was awesome. Chase ended up with so many goodies, lots of candy and even made a spider at the Michael’s booth.

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They hold this event every year so keep your eyes opened for next year’s announcement and don’t miss out on this amazing free event!

Wishing For Fall

FALL IS HERE!

Or at least that’s what I keep hoping. We had about a week of cooler weather before summer came back. And now Mother Nature can’t make up her mind, sweater weather in the morning and tank top weather in the afternoon. It drives me crazy this time of year. I live for apple picking, sweatshirt weather, falling leaves, bonfires and corn mazes. I’m sure many of you do too. Do you have any fun places to visit in the fall that you love? Leave a comment and maybe I’ll feature them in a post here or on one of our social media pages.

Lake George, New York

Ever has those moments where life seems to take over and everything gets crazy and out of your control? These last couple months have been exactly like that for us. But I’m so glad to be able to get back into the swing of things and talk to all of my amazing followers, thank you for sticking by us through our months of silence.

Our first big trip of 2019 was to the gorgeous area of Lake George, New York for a family vacation with my parents, sister, brother-in-law and niece, all thanks to my amazing parents for this trip. It’s about 6 hours north of us but the scenery made the long drive worth it. Taking 5 kids on a long car ride is always an interesting undertaking but we made lots of plans to have fun. My 5 year old knows all his letters know so we played the Alphabet game on the way up and he actually found more letters than my older kids. A few other road trip tricks and treats we do are the license plate game (found about half the states), I Spy (which got very interesting and including some road kill thanks to my 11 year old), the silent game (which only lasts about 5 minutes) and lots of books and puzzle books. Plus it’s always a good thing to have chargers for their electronics when the driving gets too boring. Thankfully we all made it one piece, even though at times I was tempted to run away at a rest stop.

We stayed at the Wingate by Wyndham, which is a gorgeous hotel located about 5 minute drive from the lake. They offer complimentary breakfast, coffee all day, an indoor and outdoor pool, laundry facility, workout room and I cannot say enough times how nice the staff was. We got there before check in and they gave us a keycard in order to use the pools until the rooms were ready. I highly recommend staying there if you visit the area.

After swimming, we still had time so we headed down to the lake to check it out. There are so many parking areas which made it nice; even with how crowded it got, we also found a spot to park. The breeze coming off the mountains felt amazing and the scenery was more beautiful than I expected. We got ice cream from The Pink Roof, which was delicious and a lot less expensive than I was expecting; and we watched the boats come in and pull out including the Minne Ha Ha which is a gorgeous paddle boat that has a calliope on board powered by the steam as you travel the lake. The beach areas for swimming were well maintained with lots of room for everyone, the designated fishing areas were accessible to everyone including anyone in a wheelchair, there is a restaurant for everyone no matter your taste and so many shops that you can find anything you want.

Our first day was spent swimming and checking out the town, then we headed for dinner at the Adirondack Pub & Brewery. With a group of 10, we expected to have a small wait but were able to make reservations and sat down as soon as we got there. The food was AMAZING! They had something for everyone in our party, made to perfection. I got the Gouda and Chorizo stuffed chicken, definitely one of the best meals I’ve ever had. They also offer many locally brewed beers including Bare Naked Ale and also serve Bear Wizz Root Beer brewed right in the Lake George region.

Our evening ended with some of our party going to Fort William Henry for their ghost tour. The history of the fort was intriguing and while I didn’t see any faces or apparitions, we did catch some interesting photos and learned a lot about the tragedy that happened there.

 

Our four days there were full of fun, laughs, lots of memories, delicious food and new experiences. We drove to the top of Prospect Mountain where usually you can see 100 miles from the top. It was a little rainy and cloudy that day so we couldn’t see much from the top but the views from the lower pull off spots were still gorgeous. It’s only $10 per car to drive up the mountain and it’s so worth it.

We also ate at the Moose Tooth Café (I love that name). The inside of the café is set up to look like you’re eating in the woods including a “thunderstorm” (flashing lighting, raindrop icicle lights and thunder), moving woodland creatures and even butterflies that flap their wings. The food there is delicious and I finally tried the Bear Wizz Root Beer which was so good.

 

Some of the new experiences that we tried were going paddle boarding and kayaking. This was the first time for the kids and I to try paddle boarding and while they had a great time and managed to stand up and travel the lake, I stood up and promptly fell off (taking the paddleboard upside down with me and bruising my shin of course). Riley was even able to do some Fortnight dances while standing up on his paddle board, that child picks up everything so quickly. Chase and I decided to ride out in the kayak, which he loved. He learned how to paddle quickly and even took my mom out with him to show her. We went with Kayak Lake George and I’m so glad that we did. The equipment was in great condition, had life jackets for everyone, and even had a small beach and splashing area for my 1 year old niece to have fun in while we were taking turns on the lake. If you’re going up there, definitely look for them at 22 Lake Ave, Lake George and http://www.kayaklakegeorge.com. 

 If you love history, be sure to head over to Fort William Henry, only in service for two years. The fort was actually rebuilt using the original blueprints from England. The tour demonstrates how they loaded their guns and cannons, they have an enlistment demonstration for the kids. They loved it!

Another first experience was an early birthday present from my amazing parents for something that I’ve been saying for years that I want to try: parasailing! My brother-in-law joined me for his first time as well. We kept joking that they would hear us crying from the shore line but we were determined to do it. The company that we went with was Pinky’s Parasailing Adventures. The captain of the boat explained how to sit to get off the boat, how to land and what to do in case the tow rope broke (eek!); he also loved sharing his stories of his adventures and time doing parasailing and made us feel completely at ease before we went up. As we got clipped to the bar and settled on the back of the boat, my nerves were rocking as I have a small fear of heights especially when I’m on cables such as ski lifts or sky rides at amusement parks. I’m happy to say that we had a great time! It was so smooth and the views were amazing; it didn’t feel like we were moving as the boat moved. When we landed, we found out that we were 300 feet above the lake! It didn’t feel more than 100 honestly. Now I can’t wait to go again! Pinky’s is located at 2 Kurosaka Lane,https://www.parasailingadventures.com and you can call them at 607-272-7245 or 518-681-9440. I would recommend them to anyone who wants to try parasailing!

 

Lake George was amazing and the perfect place for our first adventure in 2019. The views were breathtaking and had something for everyone. I’m definitely hoping to go back sometime.

Life With Lea

”I am a single mum. What is your super power?” – Anonymous

Life is one great big adventure and the whole world is there to explore. Wherever you go in your travels, you’ll come across fellow travellers. Their stories are inspiring, their pictures amazing and their smiles contagious. We’ve decided to start interviewing our fellow travellers and share their stories, advice and pictures with all of you.

Lea Beven is our next travel interviewee. Her story as a single mother inspires me and hopefully will inspire other single parents as well.

Can you tell us a little about you and your family?

            Our family is myself (45 yr old single mum), 6 year old son, our cat and our dog. We worldschool and have done part time till this term, and now we are full time home educate with multi trips each year. 

Do you travel full time or part time? How many countries have you visited?

            I’ve taken my son to 14 countries, we’ve already got 3 planned for 2019 but usually is more. We full time home educate and travel when we have an interest we are following  (I.E. volcanos interest became Lanzarote and Pompeii)

Throughout your travels, is there one memory that sticks with you?

            It just all feels magical,  my son is so engaged with natural curiosity that it doesn’t need ‘teaching’ because he’ll ask all the questions anyway. I feel so proud when he repeats things he’s learned on trips to other people,  I know then that’s he’s genuinely taken it on board.

How as your first trip? How long ago was it?

            We’ve travelled regularly from birth so I don’t remember too many specifics but the one at the start easy to remember was to the Calais refugee camp The Jungle, where we delivered a caravan together to a family.

What has been your favorite adventure so far?

            Without a doubt the fairytale route in Germany for a few weeks. We explored where the traditional fairy tales originated from and learned about the authors of each, and my son was so excited he began to write his own stories.

What’s on your bucket list?

            I’m living my dream already.  

Do you have a blog/FB page/Instagram/Twitter/Pinterest account that we can use to follow along on your adventures?

            Yes http://leabeven.com/ is my blog and I have @leabevenpage on Facebook.  I also run the Shoestring Mum Facebook group and a Home Ed Lego group.  

Do you have any advice for anyone who is itching to take that first step to travel?

            If you’re not sure where to start, book any flight and figure it out as you go. Don’t procrastinate.  We tend to jump on fare errors where we can.

Do you have anything else you’d love to share with my followers?

            Travelling mixed with the stability of having a home / base is lovely. We’re living in a fabulous community yet meet people worldwide we can keep in touch with.

Thank you so much Lea! I loved reading about your experiences and hearing your story. I hope her story has inspired you to check out her Facebook pages and follow along on her blog. Enjoy the amazing life that you’re living!

Dreaming of Summer

We’re in the middle of an artic freeze where the wind chill has the outside temperature feeling as if it’s -12. Brrr, this weather is making me dream of the beach and summer weather. Gentle summer breeze, the warmth of the sun, smell of the Atlantic Ocean; my perfect summer day is spent at the beach at Sea Isle City, New Jersey. Yes I said New Jersey. It might not be the tropical beaches of Hawaii or the Maldives, but it’s the beach of my childhood and now my children’s childhood. We grew up going to there every summer and it still feels the same.

Sea Isle City is located an hour south of Atlantic City. The town doesn’t have a boardwalk like most beaches that you think of in New Jersey; their promenade offers shops full of unique souvenirs, old time photos, delicious ice cream, homemade fudge and of course salt water taffy. They also have two arcades on the promenade which my kids love trying to win enough tickets by get those big items behind the counter. The best place to find the fudge is James’ Fudge located right on John F Kennedy Blvd right at the promenade. They also offer the best salt water taffy I’ve ever tasted. There is also a playground and basketball courts on the main road into Sea Isle City, the John F Kennedy Blvd. They’re located just one block from the beach.

The beach itself is a pay beach which makes it the perfect family beach. It will get crowded but not as crowded as other beaches where you can’t find anywhere to sit and have to squeeze in between two families’ blankets. They have separate sections for boogie boarders and swimmers with life guards at both sections. You can also watch people fishing by the rocks and sometimes they catch small sand sharks which they release but they’re really neat to look at. If you go early morning, you can find some amazing sea shells and even watch small ocean critters in between the rocks during low tide.

There are many other fun things to do at Sea Isle City besides the beach. At Excursion Park located at the John F Kennedy Blvd and the Promenade; they offer family movies once a week at dusk on Mondays, the Farmers Market is open on Tuesday mornings and the Family Dance parties are Tuesday evenings, if you play an instrument or sing you can stop by the Open Mic Night on Wednesdays, Thursdays showcase different bands in the evenings, Fridays you can watch classic movies at dusk and Saturdays offer another showcase of bands. All these events are free to everyone. Other summer events held throughout different areas of Sea Isle City include beach yoga, beachcombing, softball and basketball tournaments, 4th of July celebrations and fireworks, and 5K races.

Just thinking of all the fun and laughs from summer pasts make me want to develop time travel and head to the summer months. But until that happens, I’ll just have to rely on my memories and pictures. Hope you’re all staying warm in your in the Arctic blast as well and the countdown is on until the summer!

Traveling with the Taylors

“Live life with no excuses, travel with no regret” – Oscar Wilde

Life is one great big adventure and the whole world is there to explore. Wherever you go in your travels, you’ll come across fellow travellers. Their stories are inspiring, their pictures amazing and their smiles contagious. We’ve decided to start interviewing our fellow travellers and share their stories, advice and pictures with all of you.

Bianca Taylor was amazing to step forward and answer some questions about her travels with her family. Hope her story fills you with wanderlust and inspires you to take that step.

Can you tell us a little about you and your family?

We are a Bianca and Robert Taylor and we are a full time digital Nomad traveling family with our 5 year old son from South Africa. We left to travel two years ago. 

Do you travel full time or part time? How many countries have you visited?

We travel full time. We slow travel meaning we spend about three months in a place at a time often with quick stops en route to our next major destination. We have visited 6 countries in almost two years. 

 

Throughout your travels, is there one memory that sticks with you?

We have so many beautiful memories it’s really hard to choose one. From releasing turtles in Malaysia to meeting so many interesting travelers who became friends along the way. We love the basic stuff, eating local food, walking local street, meeting and befriending locals and seeing local sites. Every now and again one of us will say “Can you believe we are walking in a foreign country, greeting people in a foreign language and we feel so at home doing it? “

 

How as your first trip? How long ago was it?

Our first stop was in Thailand, it was amazing and completely different to our home country South Africa. We did not return home from there and just kept in travelling.

 

What has been your favorite adventure so far?

Honestly we have had so many it’s hard to say. But a more recent adventure was experiencing snow for the first time in the mountains of Georgia the country recently. We loved tobogganing, hiking and playing in the snow. It was only a four day trip but we are making plans to return soon and learn to ski and snowboard. 

 

What’s on your bucket list?

We don’t have a bucket list as such, we just want to experience as much as we can in as many places as we can. A few I can think of is, we would like to traverse Europe by train. We have done Thailand, Malaysia and some of the Trans-Siberian through Russia which we will still complete.  Learn to snow ski or snow board. Have many ethical animal and nature experiences and we are always looking for volunteer opportunities. We would like to go on a Disney  cruise. We want to see all the wonders of the world and visit as many countries as possible. We want to swim in every ocean and sea. We want to have so many experiences together as a family.

Do you have a blog/FB page/Instagram/Twitter/Pinterest account that we can use to follow along on your adventures?

Yes, we have an Instagram page you can follow us on and we have a website where we share articles on some of our experiences and advice on how to do what we do. We hope to inspire others to be free to live this lifestyle with their families too. 

https://www.instagram.com/nomadtaylors/

https://thecreativeacademy.co/how-we-left-south-africa-to-travel-the-globe/

Do you have any advice for anyone who is itching to take that first step to travel?

Research is key.  Don’t let fear stand in the way of your dreams.

 

Do you have anything else you’d love to share with my followers?

Don’t live your lives on other people’s terms or goals. Follow your desires and you will be much happier. It was really very difficult for us to catapult out of South Africa, but we were determined to and we stayed focused and did what we needed to do, one step at a time. And the next thing we were living it.  if we could  do it, anyone can. Just do what it takes and join so many other families living this life. Follow those families on their blogs, websites, join Facebook pages and groups while you are working on it. These people kept us motivated and inspired when things became challenging. They are also amazingly supportive when often our friends and family back home don’t understand our vision for our lives. But out here or on the net, there are many of us.

 

Thank you so much Bianca! Your story is amazing and your pictures showcase the many beauties that you’ve discovered along your journey. I hope her story has inspired some of you to check out her social media pages and follow along on her blog. Safe travels and have fun out there!

365 Days To Try Something New

Hello and welcome to 2019! This year has 365 new opportunities to write your story and 365 chances to try something new. We decided to jump start 2019 with something new for the kids: a train ride to Philadelphia, PA! They’ve been on train attraction rides before but this was their first time on a commuter train…and they loved it! We rode Amtrak from the Lancaster station to the 30th Street station in Philadelphia and these goofballs decided they wanted to ride backwards. They made a game of trying to read the station names we passed by and used the time to decide where they wanted to eat lunch when we got there (no one could agree so we just decided to walk and pick).

They were in awe of the 30th Street Station when we got there. It’s much larger than many places they’ve been and lot busier. Riley and Chase loved the train board with the departure gate numbers and times. We decided to take a walk towards Broad St to see if we could find any part of the Mummers Parade and thankfully we did. We found several groups performing along John F Kennedy Boulevard. The costumes are so colorful and the sets come alive. The kids laughed and giggled at the many performers as this was their first time seeing it live. We’ve caught it on TV before and they enjoyed it, but there is just something different about seeing it in person. I didn’t get to take any pictures of this one as my phone decided it didn’t have enough storage (ugh lesson learned) but they had a Mummers group that their set and costumes were Beauty and the Beast! That is my absolute favorite movie!

We found this amazing restaurant: Misconduct Tavern and we could watch the Mummers act right out the window. It’s located right on John F Kennedy Blvd and the food is amazing! The boys and I got the 3 cheese cheeseburgers and sweet potato fries which were so good and cooked perfectly, Emma decided on a Caesar salad (it was humungous) and Alexis chose the small portion of Mac N Cheese (still large for a small and mouthwatering). The prices were perfect, under $70 for all of us; and the server we had was amazing and even was great and patient with the kids deciding their food. I did write down his name so I could praise him here but I lost the paper somewhere on our journey unfortunately.  I highly recommend anyone eat here when they visit Philly, I know we will be back again!

After lunch, we kept walking down JFK Blvd watching the many different Mummer groups. Chase and Riley had to pose with the giant spider they found and of course cotton candy had to be bought (I swear these kids are hollow at times).

The kids found these giant game pieces and climbed all over them. The game pieces are an art installation by three different artists and is across the street from the LOVE Park.

Then we headed over to check out the giant Christmas tree in front of City Hall which has love written in different languages on a banner circling it. Walking through City Hall, Chase discovered a little carousel in the center and we all decided to take a ride.

After the carousel ride, we slowly made our way back to the train station as their legs were all tired from the walking to wait for our ride home. Riley darted up to the train board to see what gate we had to depart from and they were amazed at how many people were already in line. There is so much to see and explore in Philadelphia and we love that we’re only a short train ride away from this historic city. Thanks for allowing us to explore your winter fun Philly and see you next time!

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