Pain...
Life is painful. It seems no matter where you are in life some sort of pain is affecting you. Death of a loved one, financial doubts, relationship woes, fear of the future, physical pain, etc... and even if you aren't dealing with some sort of pain right now, likely you're carrying someone else's burdens. Maybe your ailing parent, the child being seen by the social worker at school, the homeless person who could really use a shower, a new widow who longs for one more hug, or the person you've never met but follow their cancer story online. Just so much pain.
Sometimes we know how it happens, other times we don't. Some pain lasts only a short time, some lasts forever. Some people experience a lot of pain and others maybe a few bandaids during their lifetime... My heart is so heavy for some people today. I wish I could take away pain, or even say time heals, because it does, but sometimes that time isn't until eternity.
Lately I've asked, "why me?" many times. I've had a fair share of losses in my life. A best friend in high school. All four of my grandparents. My mother in law in front of the computer screen as we skyped. My sister in law when she was just 42, and certainly not to forget the two babies I have waiting on me in Heaven. Then there is the physical pain. Maybe I've experienced more physical pain in the past 35 years than others my age, though I know there are others who have experienced much more. I have debilitating back issues. I've survived and thrived post bacterial meningits. I'm overweight which embarassingly causes my knees and ankles to hurt just to climb the stairs or workout. I put up a good fight against my pillows at night. But if this is the worst of my pain, I'll survive.
But then... just when you think you are going to be ok? You have children. Nothing will ever hurt them or cause them pain, at least this is our hope and dream for them... am I right?! If only we could protect them from the pain... Which leads me to finally writing this blog.
Karlie, our middle child started having pain, primarily at night a couple of years ago. I can't tell you how many people said, "growing pains." This continued for months. We took her to our family doctor. They took blood (not easy on a 3 year old) checked all her blood counts and looked for juvenile rheumatoid arthritis. We ended up walking away with, "I'm sure it's growing pains." I trusted the doctor. I'd done my fair share of google research and couldn't find anything to prove otherwise. So for the next 18ish months our middle child must've been growing, rapidly, because the pains happened often. Bless her liver she prob had more Tylenol than the average 18 year old in her short little life, it was the only thing that helped... some. We tried heat, massage, prayer and the pain just continued. The pain was typically in her legs, for a long while it was her legs only. Then she began complaining about her hip, back and occassionaly her foot. Then the toe pain... I'm talking screaming out because her toes hurt SO bad! My mother may have thought I was abusing our child when really, I was doing all that I could, even taking her in to our local shoe store asking them to double check the fit on that pricey new pair of shoes we were buying, Didn't work. Tears continued.
Emotionally, Karlie has been quite the challenge. "Middle child syndrome," it's what everyone said. She's being raised by the same parents as our "star" older child. The measure of this child's fits sure made the oldest seem like a gem. How could they be THIS different? Seriously, you stub your toe or hit your funny bone and it makes you cringe, maybe even curse a little... but Karlie? Goodness no, this child has some lungs! We found ourselves constantly saying, "Karlie, learn how to control your emotions!!!" It's been frustrating. We may or may not beat her little bum trying to keep her from reacting with such volume. Then there's the anger; wowza. Is this normal for such a little girl to get so ticked at her baby brother for something so minor? Some would say yes, like we did. It's the fact that, like with her physical pain, she doesn't have control over her reactions. Lord knows her mama comes from a line of strong tempers so maybe she's got the gene?! So we try to work with this, maybe not consistently like she needs but we try. And we pray.
April 2016, Kindgergarten summer school is starting soon! Guess what that means?! Annual trip to the doctor for the required shots for school! It was at this appointment I may have been identified as a helicopter parent. It's my job right; to drill the physician on every detail since I'm just trying to make sure they are well? We reviewed all Karlie's symptoms with the nurse which included: "growing pains," occasional random headaches to which she would just "sleep off," a lot of random extreme fatigue and emotional "outbursts." Our doctor came in, not much had changed so she was going to have the nurse come back, give them their shots and we'd be on our way. That's when I may have lost it. I stopped her, cried a little (duh, I'm a Moore-we can't make it through one family prayer without crying) and I said, "Wait, there is SOMETHING wrong with my child and I NEED you to figure it out." She sat back down, listened closely and said, "Well lets run a CBC on her and maybe a tick panel too." Ok, do whatever you need to do just PLEASE figure this out. In my heart I knew there was something other than growing pains wrong with our precious little girl. I helped hold her down while they poked and prodded as she screamed, took numerous viles of blood while her big sister sat nearby quivering because she was so scared of what they were doing to her best friend, her little sister. (mommy fail)
Fast forward, one week. Phone call from our doctors office and I thought, "Great! They've figured something out!" "Mrs. G. Your daughter has Lyme Disease. We've already called in a antibiotic, she'll take it 3x a day for the next 21 days." That was it. This is when we got busy. We started researching. Holy overwhelming. I had heard of Lyme disease and knew it came from ticks but not much more than that.
I learned quickly that our daughter needs to be seeing a LLMD (Lyme Literate Medical Doctor) You see, there isn't enough research being done and our regular family physicians are not experts on Lyme. Here is an example: National Institute of Health reported in 2015 the federal government donated $25 to the $674 dollars to research Breast cancer alone. Rheumatoid Arthritis $59, Serious Mental Illness $381, Multiple Sclerosis $94, Depression $390... These last 4 diseases I've mentioned are often diagnosed, when the underlying cause is Lyme Disease! Lyme is called "The Great Imitator" because it's symptoms mimic all these other diseases and this is what is trying to steal the joy from our beautiful little girl! It's already affecting her joints and her brain and we plan to FIGHT for her, and to have her treated for this awful disease. One there is NO CURE for. Treatments, yes. Cure? None.
Why is this? Well, I'm certainly no expert. But I'm learning. Watching the trailer for the documentary "Under Our Skin" may be the easiest explanation of the government/physician/insurance/ connection that I can use. Please take the 2 minutes to watch this:
and if you're still curious you can watch the full documentary on YouTube, "Under Our Skin."
Thankfully the Lord has already begun to answer our prayers. We first prayed that we would find the right doctor. Just as we were looking into making a trip to Wisconsin to see a suggested doctor, (which was giving me anxiety thinking of the traveling expenses, consult and treatment) God led us to the owner of an orchard about 15 miles from us where we went and picked blueberries for the first time. He told us about his doctor who now practices out of Columbia, MO. That same night a trusted friend had messaged me about the doctor who is currently successfully treating her brother for Lyme as well! Thanks for that "written on the wall" message from a God who knows I needed confirmation. That next Monday morning I called to make the appointment with Dr. Charles Crist. His earliest appointment would be nearly 6 months from now. Not only is it extremely hard to get in, it's expensive for a family on one income. I'm going back to substitute teach this fall (shameless plug: I'd love it if you'd share with your teacher friends) to help save the money for her appointments coming up and most likely the treatments that he will be giving her. I'm also planning to practically beg my friends, and their friends as well to host an Usborne Books and More Party with me or even shop at my online bookstore: https://l4138.myubam.com/ and I will earn 25% of whatever you buy and have promised to put this money aside for her consults/treatments!
The PAIN that Lyme Disease is causing not only our daughter, but our entire family is crazy. We've lost countless hours sleep just reading to see how we can help her now (We've been gluten free at home for just over a week now!) while we prepare for her appointments. It hurts us financially while we pay copays at Children's Mercy for the Infectious Disease doctors. It's put a damper on my social life, I feel like this is all I've talked about for the past 2 months and I miss going deep with my girlfriends about everything else. It's emotionally painful for my family when I'm stressed and exhausted. This disease is draining. Please spread awareness. The more people that share, the more research that will be done. The more research the better chance our daughter, and maybe even someone you love stand a chance at a lifetime with less or NO PAIN.
I'm including the website for the doctor Karlie is scheduled to visit for those who are interested.
http://drcharlescrist.net/borreliosis.html
But here is the good news,.. LIFE is still GOOD. I'm so very thankful for every single day that God gives us. I'm thankful that life on earth is SO short compared to that of eternity where we will ALL be healthy, happy and together! Can I get an AMEN!?
But then... just when you think you are going to be ok? You have children. Nothing will ever hurt them or cause them pain, at least this is our hope and dream for them... am I right?! If only we could protect them from the pain... Which leads me to finally writing this blog.
Karlie, our middle child started having pain, primarily at night a couple of years ago. I can't tell you how many people said, "growing pains." This continued for months. We took her to our family doctor. They took blood (not easy on a 3 year old) checked all her blood counts and looked for juvenile rheumatoid arthritis. We ended up walking away with, "I'm sure it's growing pains." I trusted the doctor. I'd done my fair share of google research and couldn't find anything to prove otherwise. So for the next 18ish months our middle child must've been growing, rapidly, because the pains happened often. Bless her liver she prob had more Tylenol than the average 18 year old in her short little life, it was the only thing that helped... some. We tried heat, massage, prayer and the pain just continued. The pain was typically in her legs, for a long while it was her legs only. Then she began complaining about her hip, back and occassionaly her foot. Then the toe pain... I'm talking screaming out because her toes hurt SO bad! My mother may have thought I was abusing our child when really, I was doing all that I could, even taking her in to our local shoe store asking them to double check the fit on that pricey new pair of shoes we were buying, Didn't work. Tears continued.
Emotionally, Karlie has been quite the challenge. "Middle child syndrome," it's what everyone said. She's being raised by the same parents as our "star" older child. The measure of this child's fits sure made the oldest seem like a gem. How could they be THIS different? Seriously, you stub your toe or hit your funny bone and it makes you cringe, maybe even curse a little... but Karlie? Goodness no, this child has some lungs! We found ourselves constantly saying, "Karlie, learn how to control your emotions!!!" It's been frustrating. We may or may not beat her little bum trying to keep her from reacting with such volume. Then there's the anger; wowza. Is this normal for such a little girl to get so ticked at her baby brother for something so minor? Some would say yes, like we did. It's the fact that, like with her physical pain, she doesn't have control over her reactions. Lord knows her mama comes from a line of strong tempers so maybe she's got the gene?! So we try to work with this, maybe not consistently like she needs but we try. And we pray.
April 2016, Kindgergarten summer school is starting soon! Guess what that means?! Annual trip to the doctor for the required shots for school! It was at this appointment I may have been identified as a helicopter parent. It's my job right; to drill the physician on every detail since I'm just trying to make sure they are well? We reviewed all Karlie's symptoms with the nurse which included: "growing pains," occasional random headaches to which she would just "sleep off," a lot of random extreme fatigue and emotional "outbursts." Our doctor came in, not much had changed so she was going to have the nurse come back, give them their shots and we'd be on our way. That's when I may have lost it. I stopped her, cried a little (duh, I'm a Moore-we can't make it through one family prayer without crying) and I said, "Wait, there is SOMETHING wrong with my child and I NEED you to figure it out." She sat back down, listened closely and said, "Well lets run a CBC on her and maybe a tick panel too." Ok, do whatever you need to do just PLEASE figure this out. In my heart I knew there was something other than growing pains wrong with our precious little girl. I helped hold her down while they poked and prodded as she screamed, took numerous viles of blood while her big sister sat nearby quivering because she was so scared of what they were doing to her best friend, her little sister. (mommy fail)
Fast forward, one week. Phone call from our doctors office and I thought, "Great! They've figured something out!" "Mrs. G. Your daughter has Lyme Disease. We've already called in a antibiotic, she'll take it 3x a day for the next 21 days." That was it. This is when we got busy. We started researching. Holy overwhelming. I had heard of Lyme disease and knew it came from ticks but not much more than that.
I learned quickly that our daughter needs to be seeing a LLMD (Lyme Literate Medical Doctor) You see, there isn't enough research being done and our regular family physicians are not experts on Lyme. Here is an example: National Institute of Health reported in 2015 the federal government donated $25 to the $674 dollars to research Breast cancer alone. Rheumatoid Arthritis $59, Serious Mental Illness $381, Multiple Sclerosis $94, Depression $390... These last 4 diseases I've mentioned are often diagnosed, when the underlying cause is Lyme Disease! Lyme is called "The Great Imitator" because it's symptoms mimic all these other diseases and this is what is trying to steal the joy from our beautiful little girl! It's already affecting her joints and her brain and we plan to FIGHT for her, and to have her treated for this awful disease. One there is NO CURE for. Treatments, yes. Cure? None.
Why is this? Well, I'm certainly no expert. But I'm learning. Watching the trailer for the documentary "Under Our Skin" may be the easiest explanation of the government/physician/insurance/ connection that I can use. Please take the 2 minutes to watch this:
and if you're still curious you can watch the full documentary on YouTube, "Under Our Skin."
Thankfully the Lord has already begun to answer our prayers. We first prayed that we would find the right doctor. Just as we were looking into making a trip to Wisconsin to see a suggested doctor, (which was giving me anxiety thinking of the traveling expenses, consult and treatment) God led us to the owner of an orchard about 15 miles from us where we went and picked blueberries for the first time. He told us about his doctor who now practices out of Columbia, MO. That same night a trusted friend had messaged me about the doctor who is currently successfully treating her brother for Lyme as well! Thanks for that "written on the wall" message from a God who knows I needed confirmation. That next Monday morning I called to make the appointment with Dr. Charles Crist. His earliest appointment would be nearly 6 months from now. Not only is it extremely hard to get in, it's expensive for a family on one income. I'm going back to substitute teach this fall (shameless plug: I'd love it if you'd share with your teacher friends) to help save the money for her appointments coming up and most likely the treatments that he will be giving her. I'm also planning to practically beg my friends, and their friends as well to host an Usborne Books and More Party with me or even shop at my online bookstore: https://l4138.myubam.com/ and I will earn 25% of whatever you buy and have promised to put this money aside for her consults/treatments!
The PAIN that Lyme Disease is causing not only our daughter, but our entire family is crazy. We've lost countless hours sleep just reading to see how we can help her now (We've been gluten free at home for just over a week now!) while we prepare for her appointments. It hurts us financially while we pay copays at Children's Mercy for the Infectious Disease doctors. It's put a damper on my social life, I feel like this is all I've talked about for the past 2 months and I miss going deep with my girlfriends about everything else. It's emotionally painful for my family when I'm stressed and exhausted. This disease is draining. Please spread awareness. The more people that share, the more research that will be done. The more research the better chance our daughter, and maybe even someone you love stand a chance at a lifetime with less or NO PAIN.
It is our prayer that Karlie will be healed. We know we serve a God who is Miracle maker and I fully expect HIM to show up and show off for our girl! She's such a pretty girl!
I'm including the website for the doctor Karlie is scheduled to visit for those who are interested.
http://drcharlescrist.net/borreliosis.html
But here is the good news,.. LIFE is still GOOD. I'm so very thankful for every single day that God gives us. I'm thankful that life on earth is SO short compared to that of eternity where we will ALL be healthy, happy and together! Can I get an AMEN!?
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DeleteAmen! I'm so sorry to hear that your Karlie and family are going through this. You and your family has been in our prayers since you asked me a couple months ago. I truly believe that our GOD will show up! Thank you for sharing your story. :)
ReplyDeleteThanks Beth. It's a battle for sure, but not one that can't be defeated!
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