This morning my husband (Holly's) and I discussed some of the troubles we are having with integrating ourselves back into our community. This discussion made me realize how much my lyme friends have helped me to get through a time in my life that honestly felt unbearable. We have been sick and home and alone. Our energies are spent on doing the bare minimum of what we need to do to keep our businesses running. Don't get me wrong, we understand that peoples lives continue even though we feel like someone has pressed the remote and put our lives on pause. We (the Stanleys and the Lounders) are blessed, more so then many other lyme sufferers, in that we have had friends offer prayers, comfort and support to us. The fact of the matter is, though, we are able to sit here and watch on social media as others live and enjoy their lives, many not even realizing the gift they have of simply being able to live, work and play.
We are all creatures, created by God, who need social connections. It's how we are hard wired. We also naturally gravitate to others who have lives similar to our own. We are so grateful to the online lyme community whom we have connected with. We feel bonded to people who, if we saw on the street wouldn't recognize, but online we have connected on a level more personal then many of my long term friendships are. Why? Because we all get it. We don't have to explain a back story, we are all living the same stories, so similar it's absurd that the general community still doesn't see it.
Today, for the very first time in a long time, I had the desire to be connected to the world outside of lyme. I hope that means I'm getting better. Unfortunately, I may have the desire to connect, but I still don't have the physical strength to be connected. The past couple of weeks I have realized the hardest part of this journey is just beginning. I am well enough to desire social interaction, but so overwhelmed just living with lyme and caring for my children who are sick that I can't reach out. I feel more isolated now then I did when I was bed ridden.
Both Ellen and I are still very sick, but better enough to function at a level still lower then baseline. If it were just us feeling this way with no other pressures we both would probably find ourselves slowly participating in the activities we use to be a part of. Life with lyme isn't that simple. We both have husbands who are exhausted and overwhelmed, and we both are moms with children sick with lyme. This is both physically and mentally exhausting. For whatever reason, we have become even more aware of how isolated we are. We realize it because, even though we care about our own needs, seeing our children missing a fundamental human need is heart wrenching.
We have three girls who are missing out on all the things that are unique to being young. Instead of activities, friendships, and school these three girls barely leave the house. They hardly ever even connect to others online. When they are sick they don't want sleep overs, they don't want a lot of noise, they can't handle to much light or movement. They spend their days at home, quietly doing crafts or watching tv. A large amount of effort is put into making sure they don't miss any medication doses. It's hard to schedule around four doses of medicine a day. Even reading and social media is difficult due to an inability to be able to maintain visual focus on a screen. The problem is, just because they can't do the things other kids do doesn't mean they don't have a fundamental human need to connect. They do what they can, Emma recently participated with the girl scouts at a baby sitting course, Jenna takes advantage of her good days by visiting her Otis family, and Chelsea is reserving her energy in hopes that she can function at a normal level to go snowboarding in a few weeks. The girls do have good days, but because they have even more bad days they find themselves unconnected to their peers.
Why am I sharing all this? Its because I first want to say thank you to our lyme friends because they understand, we are each other's best cheerleaders . Also, I want to thank my friends who have reached out at times to attempt to stay connected. Lastly, I want to tell all of you who have cared enough to read this far that I not only want to be a part of the community again, but to tell you how you can help our families do that!
-We thoroughly enjoy when someone stops by. We can't leave the house easily, but we miss all of you!
-Visits need to be short, or visits need to include a quiet activity. Jenna and Chelsea have had their honorary siblings stop by and just playing video games, painting, or hanging out watching tv has made their days go by a bit faster and have helped them feel they are connected to life outside our home.
-All three girls would love to do activities out in the community, feel free to invite them, also let them know you understand if they have to cancel at the last minute. We don't know from minute to minute how we are going to feel so we can never promise to be able to do something. Let them know that's ok but that the invitation is open if they feel up to it. Seriously, just knowing you still think of them is a great comfort.
-If you see any of us in the store please just give us a quick wave or pat on the shoulder. Unless WE stop and start a conversation we are probably not up to talking. Going into a store is a sensory nightmare. Often just the act of walking around is exhausting, let alone the lights, noise and movements of others. We often are trying to do as much as we can handle on limited energy. We want you to know we are happy to see you, and we would love a smile from you as well. We just find visiting in that location to taxing.
As mothers we want nothing more then to see our children get well. Nothing is more frustrating then to be aware of what your children need, but unaware of how to get it for them. We have three different treatment plans unique to each girl. All three girls are receiving treatments that are either not covered by insurance or only partially covered. In a perfect world we would be able to go get second jobs to earn money for treatment, but we are to sick to do that. We both have tried to put our treatment needs on the back burner to focus our money on our kids, but both of us found ourselves in medical crisis's when we did this. So in order to be able to be present to help our children through this we have to also pay for our own treatment. This isn't unique to us, this is a typical situation for anyone living with lyme disease.
I know I have been jumping around with this blog. My lyme brain is struggling to focus on one topic or idea. I'm going to try and connect everything.......
Just like we in the lyme community are providing emotional support to each other, many in the lyme community do what they can to offer financial or physical support to one another. Seven Slices of Lyme wants to do this as well. We do small things to raise money for our treatment, and we want to give 20% of it away to another person with lyme needing financial assistance. Last month we helped Dawn. We didn't have alot, but we gave 20% of what we raised for ourselves. If you feel led to give, even $1 then please do so. None of us in the lyme community would think badly of a person who donated $1, in fact we would love everyone who sees our YouCare pages to donate $1, it adds up!
Dawn's Fundraising Page is Here:
We have a few things that our ongoing ways to help families financially:
All proceeds from my book:
http://www.amazon.com/Developing-Black-Belt-Character-Self-Evaluation-ebook/dp/B00KVEKGP4/ref=sr_1_1?ie=UTF8&qid=1416162750&sr=8-1&keywords=developing+black+belt+character
We also have been taking all food and drink sales, along with bottle returns, from the martial arts school and putting that money towards Seven Slices of Lyme medical needs. We will be sharing our next fundraiser in the upcoming weeks.
We want to stress, more then anything else, we desire your constant prayers. We will share our needs simply so that you can pray for us. We will then share our answers to prayer so you can rejoice with us! How exciting is it to have a huge need that seems impossible to meet, met by God's provision alone. It is easy to look into the future and worry about how we are going to pay for not only our medicine, but our food and shelter! We are trying not to focus on those worries, but instead pray for what we need today, and trust God will provide it.
Thank your for loving us and caring enough to join us on this journey. We hope we are comforting others like us, while educating the community so that in the future everyone with lyme will be offered the compassion they so desperately need. To many people are suffering alone.
