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
Sunday, September 14, 2014
Tuesday, September 9, 2014
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.
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
Sunday, September 7, 2014
Helping Others When You Need Help Yourself
Not to long ago I was convicted by a verse in Proverbs:
My struggle was with defining who was poor and who was needy. By what measure does someone decide these things? If I were to do it comparatively to my own life then you would have to be pretty poor and pretty needy for me to feel convicted to help you. At the same time, someone else's measure of helplessness may be different then mine.
This is where I felt convicted.
Who am I to judge who is in need of my help?
I think it is easy for any of us to look at the struggles of others and judge whether those struggles are easier or more difficult to bear then our own struggles. Human nature causes me to look at the complaints of someone else and think: "You think YOU have it bad? How about walking a day in MY shoes!"
It doesn't take much time in scriptures to know that part of the reason God allows trials in our lives is so that we can be better equipped to help and comfort other's in their times of difficulty. I had no problem reaching out a hand to others, especially if I judged their problems to be deserving of help. Despite being sick I have shared what little food our family had with families who had less food. Believe me, this is hard when you are counting every egg and piece of bread to make sure you have enough to last the week. I've extended kind words and offered up prayers for those whom seemed in need of these tokens. Between the two 7 Slices of Lyme families we could make a long list of ways we have helped others. So, why am I convicted? I am convicted because of the hardening of a part of my heart. My attitude has been wrong.
It isn't up for me to judge whether someone should be crying out "help me" . If you have ever gone through something REALLY hard, and I know many people who have, one thing that happens is a change in perspective. What was once something that we perceived as a problem, looking at it now it seems like a walk on the beach in comparison to the bigger struggles. Now, when coming across someone who's problems seem so small it can be annoying to listen to them discuss the problem as if it is the worst thing a person can experience. You want to smack them upside the head and yell, REALLY???? The LAST thing you want to do is extend a helping hand.
God did not intend for us to judge who really needs our help. If anything, God wants us to assist anyone whom comes in our path and we have something to offer them. Even if it's just a word of encouragement. Like I said earlier. God allows struggles to make us better able to empathize with others. No matter the problem, if someone considers it a strain on their life then we need to be open to God's leading in how we can reach out a hand. Who am I to sit and be the judge of who deserves my help. It doesn't matter if I am currently in a difficult place myself, if God intends for me to reach out to someone He will provide the means and the strength to do so.
Friday, September 5, 2014
Blessed with Lyme
I don't know about you, but I know that whenever I am going through a rough time, (which, lets face it, is more often then not) nothing annoys me more then hearing a preacher or reading a devotional in which the message is "God will bless your life if you __________".
I was defining blessing to be something that happened to me on the outside such as, financial stability, positive relationships, opportunities in life.....when really, I should be defining blessing as something that is happening inside of me.
Really? So my rough time is happening because I didn't trust God enough, or I didn't tell God I was depending on His promises, or I forgot to tithe last week, or I didn't pray long enough over that last important decision? Sorry, can I have a do over then?
Recently, I actually felt bombarded by messages and devotionals on God's promises and God's blessings. I began to earnestly seek what God's word really tells us about these things. I couldn't believe that how much God blessed you depended on something you were doing. If that were true then why are some of His most faithful servants struggling on so many levels? It didn't make sense.
It didn't take long for my prayers for wisdom on this matter led me to a sermon preached by Pastor Rick Warren. It was like I had emailed him my question and he was personally giving me an answer.
My definition of the word blessing was very narrow.
I was defining blessing to be something that happened to me on the outside such as, financial stability, positive relationships, opportunities in life.....when really, I should be defining blessing as something that is happening inside of me.
The passage of scripture Pastor Rick was using was the Sermon on the Mount. It was explained that when looking at the greek translation of the word 'blessed', it actually could be translated as 'happy'. This definition coincided all I had been taught in my life about the Christian Walk. We aren't promised good health, wealth, family, friends or any of the things that I looked at as being a blessing. What we are promised is to be able to have peace in all circumstances.
I know that doesn't sound like much, but if you have ever struggled, I bet if you looked back, the worse part of that struggle wasn't the circumstances but the inner turmoil that accompanied those circumstances. I can compare it to what it's like for my daughter to have blood drawn. She will tell you that it isn't the pain of the prick that makes her hate having this common procedure done, instead, it's the anxiety and anticipation before the prick that is so hard to deal with.
As a lymie, I can tell you that the pain and fatigue isn't the hardest part of the disease. I struggle most with the stress and frustration I feel in regards to the circumstances that are a part of living with Lyme. When I am able to put all my trust on God's promises I feel relief from these negative emotions and am truly able to feel happy despite my circumstances. I had a conversation recently with an acquaintance about why I looked so good despite how much pain I was in at that particular moment.
The realization was it was because I was smiling.
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