Your Prayers are Essential to Coming through this Challenge

2 Corinthians 1
8-11 We don’t want you in the dark, friends, about how hard it was when all this came down on us in Asia province. It was so bad we didn’t think we were going to make it. We felt like we’d been sent to death row, that it was all over for us. As it turned out, it was the best thing that could have happened. Instead of trusting in our own strength or wits to get out of it, we were forced to trust God totally—not a bad idea since he’s the God who raises the dead! And he did it, rescued us from certain doom. And he’ll do it again, rescuing us as many times as we need rescuing. You and your prayers are part of the rescue operation—I don’t want you in the dark about that either. I can see your faces even now, lifted in praise for God’s deliverance of us, a rescue in which your prayers played such a crucial part.


We want nothing more then your prayers.  We created this blog for three reasons: first, to share with you all we are learning as we go through this journey together; second, to share with you our prayer requests and answers to prayer so that you may join us not only in petitioning God but also in praising God; third, to encourage you to reach out and find someone who has similar struggles as you to be a support to so that you can experience the same comfort we are experiencing.

If you look to the right of this blog you will see tabs that list our answers to prayers and also are most recent prayer requests.  If you are on a smart phone or tablet you will have to click where it says, "see web version".

Both the Stanley family and my (Holly) family have had miraculous answers to prayer since starting this group.  It seems that the more we see prayers answered the more requests we have.  I don't pretend to understand all the reasons why, but what I know is that God wants to be seen working through His people.  He is not only teaching us to completely trust Him, but He is also allowing you to learn these lessons with us.  We don't believe God causes bad things to happen, we live in a broken world due to sin, but we DO believe God can turn all that is broken into something beautiful.

I will share, here in this blog post, some of our most needed prayer requests.
-That our families find joy and new traditions during the Holiday Season that doesn't include the need to purchase material goods.
-The Lounder's, as of now, have no significant source of income going into December.  We are praying our financial needs for this month are able to be met and met on time.  Chimney Season was slower then usual this year.
-Emma and Ellen both need strength and perseverance as they continue in the beginning stages of treatment.  We pray that both Chris and Ellen our able to continue to keep their household functioning.
-Paul (Jenna's husband) can find a part time job while waiting for his February Deployment
-The Lounder's can pay their federal taxes for 2014 before the year is over
-That both Stanley's and Lounder's can pay for all their needed medication and supplements this month.

Profits from this book help both families pay for treatment.  We also donate 20% to another family fighting lyme.

Feeling Isolated

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.

When we Don't Update this Page it's because we are Living the Crazy Lyme Life

We would love to give you daily, or even weekly updates on how our families are doing.  When you are dealing with lyme it can be difficult at times to do anything but what is needed for survival.  Things happen like Ellen having heart problems, or Jenna having a difficult time starting treatment, or Chelsea taking a downturn, or Emma having an increase in symptoms while waiting to start treatment, or Holly being overwhelmed by the needs of the rest of the family causing an increase in her symptoms.  These things keep us from doing the little things that help us feel productive or connected to the community.

Lyme and it's co-infections are unique in so many ways.  How many other illnesses have a tendacy to plague the whole family at the same time?  How many illnesses go undiagnosed for not only years, but decades, causing symptoms to progressively get worse, misdiagnoses, and the associated emotional trauma with being sick and not knowing why, or even worse, having no one believe you!

Parents who are sick trying to take care of their sick children are in an overwhelming situation.  Think about the time when you were bed ridden with the flu and then your children came down with it as well.  How hard is it to take care of them when you can't even take care of yourself?  Now imagine living that way for years, that is what it is like to have Lyme Disease even before treatment.  Let's go even further into this scenerio.  Imagine going through chemo, and then add to that your children also getting chemotherapy, and then stretch that out for three or more years.  That is how it is to have lyme treatment.

There are so many choices to make, where to prioritize money, who needs the more aggressive treatment the most because you can only afford for one person to have it, and simple things like should I spend today's energy on the dishes, the laundry, or paperwork?  Today, for instance, I (Holly) have chosen to do a newsletter for taekwondo, update this blog, and then go to taewondo and teach a thirty minute class.  That is all I have done today (besides my quiet time with God).

Some days we have not choice but to extend more energy then we have.  We always pay for it later, but there are times where there is no choice.  When Ellen had to make an emergency trip to a hospital 30 minutes away I drove her,  when Jenna had a difficult herx and was up all night I had to stay awake with her, when Scott has a big job on a day he isn't feeling well he still goes and pushes through, when Ellen is needing rest she still needs to care for Emma's needs on Emma's bad days.  Going through this disease makes us wonder how much we could accomplish when we are healthy!

We choose, during this time, to focus on what's positive and also to be watching how God works in both big and small ways in our lives.  We've had some really big prayers answered this week but also have had many small prayers answered on a daily basis.  We are also so proud of our kids and how much strength they are showing.  Jenna has been dealing with severe symptoms this week but remains determined to get well.  Chelsea has missed a lot of school but is still determined to maintain high grades.  Emma has been extremely anxious about her own health but has been utilizing coping strategies to keep her anxiety manageable.  We now can include Jenna's husband Paul in our numbers, and he has been calm and consistent with Jenna while helping her through some tough days.  The kids experience pain every day and often they are able to hide their symptoms from the rest of the world.

We encourage you to keep tabs on not only our prayer requests that are listed on the right of this blog but also watch as the answer to prayer list gets longer.  Please continue to remember us in your prayers, God's strength and provision is why we have come this far and he will hold us through the rest of this journey.

Mission Impossible: Feeding a teen with food aversion issues due to lyme disease

As part of Jenna's attempt to change her lifestyle to better prepare her body for fighting lyme disease, she has chosen to cut gluten out of her diet.  She knows she should also be cutting out sugar, but doing these two big changes at the same time is a difficult feat for an 18 year old.  So, we are sticking to a strict gluten free diet and for now, doing a "less-sugar" diet. We are cutting out sugar in all the simple ways we can find and replacing sugar, when we can, with more wholesome alternatives such as honey.

For many people with lyme, the act of eating is very difficult.  Many of us have restrictive diets, add this to severe food aversion and you find yourself hungry, cranky, and with no food options that seem edible to you.

Our adventure started out yesterday when we promised that grocery shopping would be the one thing we would get done today.  We skipped church so that we would have the needed energy to get to the store.  Our cupboards were getting low on gluten free options.  The options that were available required cooking and quite honestly, none of us feel like cooking.  Jenna's husband would have been more then willing to make Jenna something, but she hates having him wait on her.  She doesn't want to feel like she's taking advantage of him.  Needless to say, Jenna found something to snack on while she waited for me to make the grocery list.

As I worked on the list I began to feel quite dizzy.  I began to abbreviate items, and make notes on the list that only I understood.  Jenna told me what she would like to have available for food choices and I added them to the list, although I wasn't specific in brands or flavors.  Once the list was complete I stood up to get ready to go.  I went to take my coffee cup to the sink but took it to the upstairs bathroom.  I stood in the bathroom looking in the mirror processing how I could use a cup to clip my bangs back.  I had to tell myself that I was holding a cup, not a clip.  I then had to tell myself the cup goes in the sink downstairs and the clips are still in the living room.  I barely made it down the stairs, crashing into the wall when I got to the bottom.  I walked into the living room and fell back against the wall, standing with my hands spread apart in my attempt to catch myself.  Scott tried to ask me what was wrong, all I could get out of my mouth, with much effort, was, "can't go".  Scott then assisted me to the couch.  I let him know that I felt a seizure coming on.

Now, poor Scott, who is completely overwhelmed in stores, had to go grocery shopping.  Paul offered to go but Scott didn't see the point.  I attempted to clarify my list as Paul rewrote in a way that anyone could understand.  During all of this, I began to have seizure activity.  Any sudden noise or movement made my feet and hands fly out in an extreme startle response.  Poor Cato, our dog, crawled to the top of the couch shaking.  I tried to speak to him with calming words, but found myself yelling as I do when I am seizing.  Poor Cato found himself outside, under the jeep, shaking.  This is what he does when he's upset.

My seizure continued on past the five minute mark so I took my PRN to help it stop.  I was pretty much recovered when Scott returned from his shopping trip.  He came into the living room shaking like a leaf because he had over extended himself.  Paul and Jenna went to unpack the grocerys...but then tragedy...none of the foods Jenna had said she could eat had been bought.  It was my fault for writing a list that was so cryptic.  Unfortunately, the hunger, and frustration over her difficulty in tolerating certain foods, caused an emotional moment.  She doesn't want to be this picky, but once she gets it in her head that something is wrong with a food, she can't then bring herself to eat it.

This is when Paul and I decided to go on Mission to Feed Jenna!

So, after a brief cry, we set Jenna up in bed with her comfy pillows and blankets, her laptop and of course Paul the Cat.

My medicine had stopped my seizure, but it's not a drug you would take and then drive.  I could barely walk in a straight line..ok, barely isn't even close...I walked in a more circular motion getting to my destination in a round a bout way.  Paul drove to the store and then I anchored myself to a shopping cart in hopes that I could walk more normally and less like someone who was intoxicated. I did get a few looks, but for the most part I held it together.

It was a gluten free shopping banaza, yes some food included sugar, but at this point any food in her stomach is a good thing.  She hasn't been eating much and is loosing weight.  Paul was a significant amount of help in picking foods.  He has been the one dealing with Jenna's difficulties eating.  He was super excited to get back home and show Jenna all of the choices we brought for her.  It worked out well because Jenna feels guility when we spend a lot of money on food, but I reminded her we are trying to get our medical expenses up to 10% of our income so that we can claim it on the taxes.  Telling her she was doing us a favor gave her permission to be joyful of all the easy food choices available to her.  The bonus is that anything she decides she can't eat, I can eat it for her.  I have no food aversion and am also gluten free. I don't mind at all basing my diet on eating the foods that Jenna develops a disliking to.  She knows that her aversion to foods is unreasonable, and difficult for the rest of us, but at the same time...this is what lyme is doing to her body.
 

We found gluten free crackers, a green smoothie full of antioxidants, snack packs that held cheese, fruit,nuts and vegetables.  They make super easy lunch options that require no cooking.

Along with gluten free bread and quality sandwich meat, we got a few treats.  We felt Jenna deserved them and we are hoping they will help her find enjoyment in eating again.  So we snuck in some blueberry muffins and cookies.  I almost bought a gluten free coffee cake for myself but one look at the calorie count was enough to stop that impulse.

 To top it off we got gluten free frozen waffles, pancakes, and french toast.  We made sure we were stalked up on sugar free syrup!

So now, we are home and Jenna is much happier having a full belly.  I am back to recovering from my seizures and prn on the couch.  If anyone I knew saw me out, then they know I was walking funny and acting funny do to lyme disease.  If you saw me and didn't know me, you probably wondered what I was on.  That's fine, you can judge if you want.  It doesn't bother me.  I have learned through this that I can never judge somebody by what I see.  We never know the back story to why someone is behaving the way they do.  They may have been like me, sick, doped up on meds,a sick daughter in crisis, a father to sick to understand the shopping list, and a son-in-law just wanting to know what he can do to help.

Oh, shoot! I am just looking at the clock and realizing my youngest has youth group in fifteen minutes.  She has been excited to go but is probably sound asleelp. So I guess I will end this blog on my shopping mission as I embark on the next mission of the day.  Operation getting Chelsea out the door and to youth group on time.  I will some day have to share how this mission is often more complex then feeding jenna is!

A Little Plus A Little Equals ALOT!

There is something special about the Lyme Community.  The way they support each other, the way they stand up for each other, and how they advocate for each other, they have to because no one else outside the community is doing these things.

The name, Seven Slices of Lyme represents the importance of us Lymies sticking together!  By ourselves we are sick, broke and alone, together we are able to accomplish what seems impossible to accomplish.

The emotional support is a Lyme survival necessity.  Suicide in the Lyme community is frequent, I would wager more frequent then with any other disease.  I never really understood why someone would contemplate this permanent, unchangeable act until I became totally disabled.  I never considered it myself, but I have children, a wonderful husband along with family and friends who support me.  Still, even with all I have to live for, I completely understand why someone who didn't have these things would make the decision to end their suffering.  To be so sick you can't leave your house, can't watch tv, can't read a book, can't have a conversation is more then anyone should have to bare.  This isn't just for days, but it can be for months and years.  To add debilitating pain to all of the other symptoms and then the fact that treatment is more expensive then most people can afford makes suicide, for many, look like the only option that contains HOPE.  We all need hope to move forward in life, and if suicide appears the only way to end the misery then suicide become the only source of hope.

The support of Lyme sufferers and each others attempts at advocacy is heart warming.  I am amazed at what so many house bound and bed ridden patients are able to do just from their computer.  I am even more amazed at how some of these people actually leave their home to attend Lyme Awareness functions, fundraising events, protests, and vigils.  We are a group in desperate need of help, but as of yet, we are on our own in raising awareness and asking for change.  We are determined and unrelenting in educating our friends and family.  We continue on despite loss of relationships, criticisms, and a decline in our health from the stress and energy that goes along advocacy.

Supporting each other financially is where we struggle the most.  It's financial support that we wish we could receive from those outside our community, those of you living in the world of good health.  You see, if we are to get well, we need to pay for appointments, pay for medicine, and pay for supplements.  Many of us have two or more immediate members of our family being treated.  Most of us have food allergies or sensitivities that make even paying for groceries an overwhelming burden.  This is where the lyme community really struggles because so many want to get well so they can do more to support others but are stuck in the shadow of dealing with the immediate needs that come with just trying to stay alive.

Personally, I am currently finding it difficult to talk to people who are sick and telling them about Lyme because I am sending them on a journey that seems impossible.  I mean really, you know someone who is sick, barely keeping their head above the water financially, and I plan on telling them, "Hey, I have the possible answer you've been looking for...but sorry, it will cost x amount of dollars to simply get the right testing, and x more amount of dollars for years into the unseeable future to be treated..oh,  and by the way, FINDING a doctor to diagnosis and treat you will take alot of time and energy, you will have to wait months for your first appointment and maybe travel hours to even get to the doctor. "   Makes me often say nothing to others who I think may be seriously ill with Lyme Disease and/or co-infections.

So, for now, I am going to focus my financial support on those of us who have taken the actions steps to get help.  We have done what we needed to do to come up with the funds to be tested and diagnosed.  Many of us, are tapped dry.  We have used up all our financial resources, even been given community support, but here many of us sit, unsure of how much longer we can pay for the medicine, appointments and supplements that our keeping us alive.   How can we support each other financially if we can't even support ourselves?  How can we think about others when we are scared about what will happen if we stop treatment.

I have been thinking about this a lot. One thing that came to mind is the 1 or 100 rule.  Now usually, I use the 1 or 100 rule to teach students the concept of why there are some rules out there that may not make sense but are important to keep order.  For instance, in a classroom, if it's not ok for 100 kids to get up and walk around without permission, then it's not ok for 1 kid to do that.  So, what if we turn this rule upside down and apply it to the lyme community.  What about saying: What 1 Can't Do, 100 Can!  

Think about it.  What if once a week, ALL of us Lymies donated $1 to an online cause.  One week $1 could go to help with the financial costs of protests, the next week $1 could go towards someone's gofund me page.  There are thousands of us online, so if we all did this then $1000's a week would go towards financial support of the lyme community!

Seven Slices of Lyme is the attempt of two families who have been blessed with help from our community, to give in return.  Not going to lie, the seven of us are still in dire need of financial blessings, but we also know there are many of you in more need then we could ever imagine.  So, it's our commitment to share a percentage of all we raise with other families who need support.  The month of October we want to help Dawn.  Here is her gofund me page: http://www.youcaring.com/medical-fundraiser/help-fund-my-late-stage-chronic-lyme-disease/114247 .  Now, we aren't raising a lot of money, not yet anyways, but what if everyone who read this blog gave $1 and then shared what you did and why on their social network pages.  One dollar then could turn into many dollars!

Our fundraising attempt for October is to sell a book I (Holly) wrote called "Developing Black Belt Character".    I (Holly), have decided not to take any profit from this book this month and donate my percentage to Dawn.  Even after this month I will donate a large percentage of the profits to other Lyme suffers.  Now, this effort won't do much if nobody buys the book.  Buying the book will benefit others in two ways, first the profits will go directly to someone with lyme disease, second, the more book sales, the more likely it will be highly rated on Amazon which, of course, will result in even more sales!  Your purchase now would be helping others into the far future.

I strongly encourage you to take up my challenge, one dollar a week, and lets see how far that money goes!

Be a Prayer Warrior

The Lounder's and the Stanley's have found that surviving chronic lyme disease is easier when experiencing the support of others.  Conveniently,  we (the Lounders) have moved next door to the Stanleys and there is no doubt God's hand was on that decision.  We wanted to create a blog that represented how we viewed navigating life with chronic illness.  Not only do we want to share all the positive things we are learning and experiencing, we want to also reach out to other families who are on the same journey and be a support to them as well.

Our first intention for this blog, besides sharing positive stories and insights, is to share our prayer requests and then also share our joy when God answers prayer.  You can enter your email and become a prayer partner.  We will dedicate a blog at least once a month (if not more often) to updating our prayer requests and answers to prayer.  You can also see our requests listed daily on the home page of the blog.  We believe God will work miraculously in our lives and we trust Him to completely meet our needs.

Our second purpose of this site will be to share any fundraising efforts we do.  Money raised will come from food sales and bottle returns at Ellsworth ATA,  Profits from the book sales of Developing Black Belt Character. , along with various fundraisers we will do such as Yankee Candle, and RADA Knives.  20% of all money raised for treatment will be donated to other families who are struggling to pay for their own lyme treatment.  Daily we see the stories and cries for help of other lyme families and we are burdened to help them the way we have received help from others.  Once we have had six months of our own treatment paid for we will then donate 50% of any money we raise to other families.

We will track all the money raised on a YouCaring Page and once a month redonate 20%.  We will then share who we donated too and encourage others to also give a small donation.

So, now that you know the purpose of this blog, let us share some prayer requests and praises!

Our Requests:
-Wisdom for the Stanleys as they enter the beginning stages of diagnosis and treatment
-We all ask for strength and health as we welcome new students to taekwondo
-Emma has peace and strength while having a down turn in her health
-Ellen is able to have the strength she needs while working and having to care for Emma
-$1000 to pay for Ellen's first Lyme Doctor Appointment and associated expenses
-Money for the Lounders to pay their federal and state taxes
-Strength and continued improved health as Chelsea enters high school
-Strength and Good health for Scott as he enters his busy season

PRAISES!
-The Lounders had a safe trip to DC and had all the needed finances
-Jenna successfully endured a long stretch away from home
-Lounder's vehicle repairs done and paid for
-Travel arrangments for Holly and Jenna's Medical Trip to DC has been made and paid for

Federal Legislation makes me cry HR4701 passes the house

As I sit here in a hotel room in our nations capital I am full of more emotion then I can express.
To log on to my computer and find out the first major federal lyme bill has just passed the house is giving me hope for not only for my future but my children's future.

I will post a link to the bill at the end of this blog.  I will also quote the Lyme Disease Associations press release as they were instrumental to getting this bill on the house floor.  There is a lot of debate in the lyme community about this bill and if it's enough or if it will work as it's intended.  I will not discuss that here.

What I will discuss is why ANY bill concerning lyme and including wordage like, "chronic or persistent condition" is something to cheer about.  It's progress!!!

Why am I cheering?

-There are others out there fighting for me and my family along with all the other lyme sufferers who are to sick to fight for themselves.

-Our government's attention is slowly being drawn to the fact that lyme can develop into a chronic condition and that there are millions of people in our country who are sick.

-I am sitting here in a hotel, miles from home, seeking treatment for a disease that I can't get treated for in my own state.  Nobody should have to be this sick and travel this much just to get the correct treatment.

-I am paying out of pocket for four people to see lyme doctors.  How is that ok on any level?  I don't blame the doctors, I blame the insurance companies and medical boards who make it to difficult for these doctors to bill insurance.  Even putting them at risk of loosing their medical licence.  Tomorrow I will be spending $1200 on two appointments.  Every month we will be spending $800 on doctors appointments alone.  The Stanleys are still trying to save the funds to pay for their inital appointments.  So far only Emma has seen a lyme literate doctor.  (Both she and Ellen have been tested and are positive.  Chris is last on the list to be tested)  They are like the thousands, the millions who are sick but can't afford to go to a lyme doctor.

-I am on pins and needles that the test I am paying a lot for my daughter Jenna to have will come back CDC positive.  This is the only way we have a hope of her insurance covering at least some of her IV antibiotic treatment.

-Jenna is engaged.  Chelsea is in highschool.  They have so much they want to plan for but the next few years are up in the air where we don't know what their health will be.

-Jenna, Chelsea, and Emma are slowly coming to the realization that this is something they will have to live with their whole lives.  They have to worry about when they have their own children because of the possibility of passing it down to the next generation.  These worries are intensified by the knowledge that seeking treatment is hard, expensive, and there is no guarantee of a positive outcome.

-As parents we worry about our children needing medical attention and having to take them to the emergency room only to be lectured about lyme not existing or even worse, being reported to CPS because of all the medication the children are on.

-The children are embarrassed to tell others they have lyme because it is so misunderstood.  Jenna said it clearly today.  They have years of being told they just need to toughen up, try harder, not complain about every symptom.  When they did go to the doctor they were told there was nothing wrong.  It's hard to now give yourself permission to be sick.  That when she allows herself to be sick she feels guilty for not trying harder to act healthy.  Can you think of another serious condition where this happens?

-We always have a fear of not getting well because we can no longer pay for our medicine.  Chelsea just had her new med rejected by the insurance.  This as she missed school today because she is sick.  I don't have $300 to pay for it.  Not when I need to buy probiotics and multiple supplements and herbal treatments that we all need to be on.  I will be fighting with the insurance company next week, because I am so healthy and have nothing else to do with my time......(insert sarcasm)

All of these reasons, plus many more, is why a simple bill passing the house has made me emotional.  We need to have hope that our children will have a better future then what we have had.

From The Lyme Disease Association:


The Lyme Disease Association, Inc., LDA, is pleased to announce that the Lyme bill, HR 4701 - “Vector-Borne Disease Research Accountability and Transparency Act of 2014” as amended, was discussed on the floor of the U.S. House of Representatives today, September 9, and passed the House by voice vote.Gibson

“This legislation is truly constituent-driven and represents a significant step forward in what has been an extensive process,” said Congressman Gibson. “For the past few years, I have worked with physicians, patient advocates, professional researchers, patients and their families throughout New York and the United States on a bill that focuses solutions. I want to thank Pat Smith and other Lyme advocate leaders for their significant and persuasive engagement and unyielding commitment to change the direction of U.S. policy to bring solutions and relief for our chronic sufferers. This bill is dedicated to those patients who have been ill for years, at times seemingly without hope, wondering if anyone in Washington was listening or cared. We hear you. We do care, and today we passed this legislation to help you get better.”

The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress to include "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections; ... a plan for improving diagnosis, treatment, and prevention."

The bill also specifies that the Working Group established shall meet at least twice each year and that it shall be subject to the Federal Advisory Committee Act (FACA), which requires transparency in operations of the Working Group. Under FACA, meetings must be publicly announced, open, and provide an opportunity for divergent viewpoints. Minutes, as well as other records and reports must be made available to the public. FACA also stresses the importance of having a fairly balanced membership in terms of points of view represented.

“This bill provides Lyme patients with a much needed voice in the shaping of public policy in Washington, DC, in a transparent setting. All aspects of the Lyme disease question including, chronic Lyme, will be examined, with participants of differing viewpoints coming together in discussion with the same goal in mind, finding research pathways which will help find a cure for Lyme disease and prevent new cases of all tick-borne diseases,” said Lyme Disease Association President, Pat Smith.

The LDA led a nationwide campaign to support this patient protective legislation and organized a letter signed by 154 Lyme & tick-borne disease groups and others that was sent to all members of the House Energy & Commerce Committee.

The LDA thanks Representative C. Gibson (NY), bill sponsor; original co-sponsors C. Smith (NJ), Courtney, Peterson, Wolf, Barletta; and other bill sponsors and Representatives who supported the bill; the Energy and Commerce Committee; and leadership of the House. Also, we appreciate the favorable remarks about the bill on the floor after Mr. Gibson spoke, from Mr. Maloney of NY, and Mr. Smith of NJ.

We also thank our partner groups nationwide who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the Senate, where we hope it will be given prompt consideration.

See the bill for yourself at http://docs.house.gov/billsthisweek/20140908/H4701_SUS_xml.pdf