Living with Lyme: Words from my mom
I cannot help but be sad whenever I look at this picture. I put Olivia's little tiny baby feet in this fresh almost 15 years ago. I put her sweet little baby feet in a brand newly poured drive way to always remember her at that moment. It was the beginning of her beautiful life, the life I wanted to be so perfect for her! It breaks my heart to have to know that all those years ago I had no idea how sick she would become and how much we would struggle. I want nothing more in this world than my children to be healthy. I pray daily for their health. As parents we wish we can protect them from everything, I failed and I feel awful. It is so unfair that Olivia is 15 and she has to live like a prisoner. I am sure there are many parents who wish they could basically lock their 15 year old up at home, but Olivia is such an amazing girl that this is certainly nothing I would ever wish for. Olivia is polite, helpful, sweet, loving, funny, quirky, talented, she is ambitious, she loves the service organization she is involved in, she volunteers times for things, she had a job at the DQ at 14 years old, she obeys instructions, and she is exactly what everyone would hope to have in a daughter. The one thing I know for sure is, good will come from this. Olivia will take what she is going through and turn it into an opportunity to help or educate others in someway. All the kindness and graciousness that has been shown to her, will be returned to others in the future in some way. Olivia is my Olive Branch! She brings peace and goodwill to everyone she meets!
I cannot help but be sad whenever I look at this picture. I put Olivia's little tiny baby feet in this fresh almost 15 years ago. I put her sweet little baby feet in a brand newly poured drive way to always remember her at that moment. It was the beginning of her beautiful life, the life I wanted to be so perfect for her! It breaks my heart to have to know that all those years ago I had no idea how sick she would become and how much we would struggle. I want nothing more in this world than my children to be healthy. I pray daily for their health. As parents we wish we can protect them from everything, I failed and I feel awful. It is so unfair that Olivia is 15 and she has to live like a prisoner. I am sure there are many parents who wish they could basically lock their 15 year old up at home, but Olivia is such an amazing girl that this is certainly nothing I would ever wish for. Olivia is polite, helpful, sweet, loving, funny, quirky, talented, she is ambitious, she loves the service organization she is involved in, she volunteers times for things, she had a job at the DQ at 14 years old, she obeys instructions, and she is exactly what everyone would hope to have in a daughter. The one thing I know for sure is, good will come from this. Olivia will take what she is going through and turn it into an opportunity to help or educate others in someway. All the kindness and graciousness that has been shown to her, will be returned to others in the future in some way. Olivia is my Olive Branch! She brings peace and goodwill to everyone she meets!
Living with Lyme: Words from my mom
These are entries she sometimes makes on my GoFundMe page. It is good to see from her her perspective.
To find out how you can help, go to "Love for Livi" page
How far would you go for your child if you had to watch them beg you in tears not to give you their treatment because they were already so sick from the others (keep in mind they are like chemo?) How far would you go for your child if you watched them become pale and utterly exhausted from an outing that consisted of getting a heart monitor hooked up to her? How far would you go for your child if you had to carry her to the bathroom and to bed at age 14 and then undress and redress them? How far would you go for your child if you held her in your arms looked in her eyes listened to her tell you in slurred speech that she was in so much pain that she couldn't handle it? How far would you go for your child if you held her head in your lap, stroking her hair as she had convulsions? I would go to the ends of the earth.
Things have been touch and go with waiting for insurance to come through on Olivia's new prescriptions. They are quite costly and the doctor has sent off a full report of our visit as she said this will be the first of many we will be doing like this. We just cannot go through this every month because once Olivia begins this treatment she cannot miss a single dose or a single day for 5 straight months or we have to start back at day 1. We just keep praying that everything will come together smoothly and that she will be able to be back in school next fall. She is such a strong girl! It amazes me to see her determination and strength. She really tries not to let things get her down, if its nice out she will take our little dog Meika outside and she will sit on the steps and enjoy the air, she went on a few errands with her grandma and out to lunch with her the other day and that was such a treat, she had her cousin come visit her for the afternoon on Saturday and they enjoyed hanging out together, and her best friend stopped by the other morning and hung out for a while and had a lot of fun too. She has been doing a nice job of getting her websitewww.lymielivi.com put together and she has been working on more blog entries, which is good for her to reach within to express herself.
She still continues to have neurological symptoms that I cannot help but worry about. The other day she asked me how to spell "catch" then she asked if it started with a "c" or a "k" and I spelled it out and she looked at me bewildered and said, "you mean it has 2 T's in it?" Also the other day she was really thirsty and she looked at me asked me for a drink and while fanning at her mouth she said, "oooh, I am parched.....or is that something you do to an egg?" It is just things like that and they seem to be happening more and more along with the clumsiness. Please continue to pray for Olivia and continue to share this as she needs all the help with her expenses as she can get. We appreciate everything everyone has done to help her and our family. We could not get through this without all of the support we have received from everyone. Thank you!
With May just around the corner, Olivia has been working hard to do her part to help raise awareness for Lyme Disease. May is Lyme Disease Awareness Month, but to Olivia, every day should be an opportunity to raise awareness.
Olivia recently appeared on the local 5:00 news for a story on Lyme Disease and how it is affecting her. She also was interviewed by our local Waverly, Iowa newspaper and they ran a story on her and Lyme Disease.
The lives of our entire family have been drastically affected by Lyme Disease. Olivia is not able to be a "normal" teenager and do the things teens are out doing. She is home alone unless her friends visit her and her visitors are quite limited as her friends are too young to drive. I have had to put my entire education on hold, I had to pass up an opportunity to get into my program of study this year as my name had been moved up on the waiting list, I can't leave Olivia home alone because of her neurological problems so even a trip to Wal-Mart for the necessities is tough unless her boyfriend happens to be over or if she can go there for a couple hours, her brother has to try to be quiet while she is asleep which is a lot, he has to try to be helpful to his sister who he wants to be mean to, and he has had to learn that we have to go without a lot of things because some medications are not always paid for and our trips to the specialist are not covered by any insurance at all so traveling out of state and paying all out of pocket really adds up. He is slowly learning there are a lot of expenses all together.
Insurance and Lyme Disease is a confusing thing. The problem is that, the CDC has not put out accurate information about Lyme Disease and the treatment of it. Because of this, the insurance will generally only pay what the CDC recommends, which is appropriate for someone who has just been bit. They have not recognized Chronic Lyme or admitted to co-infections which also need to be treated which creates a huge problem for Olivia and many others. We are all at the mercy of the insurance companies. We just pray it covers so we can struggle with other areas because we know soon enough, it will be the medication again. It is even more difficult for our situation because Olivia's father refuses to speak with us and the insurance company cannot legally talk to me either. This makes things so hard to try to get insurance problems taken care of.
We are just praying to somehow sail through these next 5 months of treatment with some positive results!
These are entries she sometimes makes on my GoFundMe page. It is good to see from her her perspective.
To find out how you can help, go to "Love for Livi" page
How far would you go for your child if you had to watch them beg you in tears not to give you their treatment because they were already so sick from the others (keep in mind they are like chemo?) How far would you go for your child if you watched them become pale and utterly exhausted from an outing that consisted of getting a heart monitor hooked up to her? How far would you go for your child if you had to carry her to the bathroom and to bed at age 14 and then undress and redress them? How far would you go for your child if you held her in your arms looked in her eyes listened to her tell you in slurred speech that she was in so much pain that she couldn't handle it? How far would you go for your child if you held her head in your lap, stroking her hair as she had convulsions? I would go to the ends of the earth.
Things have been touch and go with waiting for insurance to come through on Olivia's new prescriptions. They are quite costly and the doctor has sent off a full report of our visit as she said this will be the first of many we will be doing like this. We just cannot go through this every month because once Olivia begins this treatment she cannot miss a single dose or a single day for 5 straight months or we have to start back at day 1. We just keep praying that everything will come together smoothly and that she will be able to be back in school next fall. She is such a strong girl! It amazes me to see her determination and strength. She really tries not to let things get her down, if its nice out she will take our little dog Meika outside and she will sit on the steps and enjoy the air, she went on a few errands with her grandma and out to lunch with her the other day and that was such a treat, she had her cousin come visit her for the afternoon on Saturday and they enjoyed hanging out together, and her best friend stopped by the other morning and hung out for a while and had a lot of fun too. She has been doing a nice job of getting her websitewww.lymielivi.com put together and she has been working on more blog entries, which is good for her to reach within to express herself.
She still continues to have neurological symptoms that I cannot help but worry about. The other day she asked me how to spell "catch" then she asked if it started with a "c" or a "k" and I spelled it out and she looked at me bewildered and said, "you mean it has 2 T's in it?" Also the other day she was really thirsty and she looked at me asked me for a drink and while fanning at her mouth she said, "oooh, I am parched.....or is that something you do to an egg?" It is just things like that and they seem to be happening more and more along with the clumsiness. Please continue to pray for Olivia and continue to share this as she needs all the help with her expenses as she can get. We appreciate everything everyone has done to help her and our family. We could not get through this without all of the support we have received from everyone. Thank you!
With May just around the corner, Olivia has been working hard to do her part to help raise awareness for Lyme Disease. May is Lyme Disease Awareness Month, but to Olivia, every day should be an opportunity to raise awareness.
Olivia recently appeared on the local 5:00 news for a story on Lyme Disease and how it is affecting her. She also was interviewed by our local Waverly, Iowa newspaper and they ran a story on her and Lyme Disease.
The lives of our entire family have been drastically affected by Lyme Disease. Olivia is not able to be a "normal" teenager and do the things teens are out doing. She is home alone unless her friends visit her and her visitors are quite limited as her friends are too young to drive. I have had to put my entire education on hold, I had to pass up an opportunity to get into my program of study this year as my name had been moved up on the waiting list, I can't leave Olivia home alone because of her neurological problems so even a trip to Wal-Mart for the necessities is tough unless her boyfriend happens to be over or if she can go there for a couple hours, her brother has to try to be quiet while she is asleep which is a lot, he has to try to be helpful to his sister who he wants to be mean to, and he has had to learn that we have to go without a lot of things because some medications are not always paid for and our trips to the specialist are not covered by any insurance at all so traveling out of state and paying all out of pocket really adds up. He is slowly learning there are a lot of expenses all together.
Insurance and Lyme Disease is a confusing thing. The problem is that, the CDC has not put out accurate information about Lyme Disease and the treatment of it. Because of this, the insurance will generally only pay what the CDC recommends, which is appropriate for someone who has just been bit. They have not recognized Chronic Lyme or admitted to co-infections which also need to be treated which creates a huge problem for Olivia and many others. We are all at the mercy of the insurance companies. We just pray it covers so we can struggle with other areas because we know soon enough, it will be the medication again. It is even more difficult for our situation because Olivia's father refuses to speak with us and the insurance company cannot legally talk to me either. This makes things so hard to try to get insurance problems taken care of.
We are just praying to somehow sail through these next 5 months of treatment with some positive results!