Welcome My Newest Guest Blogger Lesley. Les and I have been friends for an eternity. We met moons ago in church and then we moved into her neighborhood and became her neighbor. We were pregnant with our oldest girls together. Those sweet girls are now 20! This is the story of a mama who didn’t give up on her girl or her God. I’m so excited to be a platform for her and their powerful message! Maybe, just maybe, I can get Callie to write her story out too……we shall see! Just watch what FAITH and DETERMINATION can do!
So faith comes from hearing and hearing through the word of Christ. Romans 10:17
I remember hearing God speak to me, through my prayer time, about my daughter. I was so very guilty of half-heartedly praying for each of my children. Prayers for protection and to grow in grace. These are all the things a “good Christian Mom” prays. This was done each day for my children. Like us all, I was going through the motions. Thankfully, God is who He is and still chose that time to speak to ole ½ effort me.
For a solid month, I was able to pray for both my boys. Amazingly enough, when I would begin to pray for my daughter, Callie, God would speak over me. I know for many we look for ways that God is speaking to us. Believe me, I would rather have the less direct approach. My Father knows me well though. He intended for me to listen. As I struggled to pray each day for Callie, He would speak over me and say, “Heal her”.
Hearing His Voice Clearly
Those were His only words. They told me, we as a family, would face a season. Also, He would, in the end, heal her. Now, this wasn’t the first time I have heard His voice, audibly. I didn’t doubt those words were His. However, I did wonder how He could be so confused. Honestly, Callie was a healthy 12-year-old.
She had never been sick. Seriously, even as a small child. She played soccer to the point that I was exhausted just driving her around to her. There were many different teams and commitments. Nonetheless, His words were clear. So, I stood tearfully in front of my husband Erik. I told him to prepare that God had told me Callie is sick.
Two weeks later her first symptom began.
Callie began fainting her first year of middle school. Seriously, as if that year isn’t awkward enough. She fainted up to ten times each day. We felt pretty confident, in the initial diagnosis. She was diagnosed by a cardiologist at Kosair’s Children’s Hospital. He said his daughter had the same issue. That during stressful times, she would faint. He even said to expect her to faint on her wedding day. There was nothing to do but continue on with life.
He claimed it was a dip in blood pressure. This was because she was an athlete. Her BP was already low so it didn’t have far to drop. He’s a pediatric cardiologist and his daughter also has this. He knows and has certainly checked this all out, right? A pediatric neurologist at Vanderbilt and a host of other doctors agreed with his diagnosis. So we went on with life with the occasional flops onto the floor.
To every season there is a new symptom with Lyme disease
Each year Callie added a new symptom and became sicker. In 7th grade, she began having knee trouble. She couldn’t bend to open her locker. Thankfully, all her sweet friends did that for her. Multiple trips to her orthopedic doctor and several steroid shots in her knees didn’t find a solution.
She played soccer with two knee braces. Also, she fainted while on the field. We left the field with ice packs all over her legs. She was the definition of a total mess! Fortunately, fainting on the field to many just looked like the most awkward trip in the world. Anyone that knows Callie knows she is fully capable of the most awkward trip in the world. So it was very believable.
Feelings of Judgment
We often felt judged by other parents for allowing her to continue to play but we knew mentally we could not take that from her and now in hindsight staying physically active was what likely saved her and kept her from becoming bedridden.
Before leaving the middle school she added extreme fatigue to the list of things affecting her daily. I would pick her up from school and she would fall asleep in the car before we could even pull out of the parking lot. Her moods were confusing to us because her nature is normally very kind and grace-filled. Often she would get furious over the smallest things and look embarrassed at herself for acting so over the top. We wrote it off at teenage girl hormones but it was actually something called Lyme rage.
More docs, more tests, and no answers as to why she was continuing to get sicker. All of her blood work for every test came back perfect and each doctor would say wow, she’s too young and healthy to have so many diseases but they offered no answers only pills and more pills. I remember at 14 from one doctor she was given pills for pain, muscle cramps and sleeping aids none of which we chose to fill. We were not going down that path.
I knew a more natural approach had to be our route but I honestly didn’t trust natural doctors or natural medicine and I certainly did not have much faith in my ability to decide if they were legit or crazy. Looking back now I think my prayer again was ½ hearted because I thought what I was asking for didn’t exist. I asked God to send us an MD that was also a homeopathic doctor. That couldn’t exist, right? They are so different in their approach that there can’t possibly be a doctor who is both. Oh, yea (Lesley) of little faith!
Two weeks after I began my prayer a sweet friend from high school made a Facebook post about her new job. I clicked on her link to see where she’d be working……in the office of an MD that was also a homeopathic doc! God, you are so good!
He is Relentless
God also began relentlessly placing the word Lyme in front of my face. I sat up many nights reading as I had for the first four years and trying to find anything we could be overlooking to help Callie. As I read all things pointed to lyme disease. At this point she had three negative Lyme tests in her records, how on earth could it be lyme? I don’t remember her being bitten, she was never sick. It couldn’t be Lyme.
Truly the hand of God
Not only did God send via Facebook of all ways a doctor I could trust because he had the familiar to me traditional medical approach he also happened to be the one Lyme literate MD in our area! There are only and a handful of them but we had one nearby and he was the very doctor I had asked God to help me find. God’s provision was beyond what I even knew to ask for in prayer!
At 16 Callie was diagnosed with Chronic Lyme disease just what God had been revealing to me and preparing us for weeks.
Two years in the desert
Jesus often taught through examples and often the best tool is a non-example. My Mom’s heart hurts when I think about Callie’s two years of treatments (from 16-18) because now I know it is an example of how not to treat Lyme. I am not sure I could have done what she did. That tenacious spirit that almost killed us when she was a preschool kid drove her through this time. I never once heard her ask “why me?”
So Much Pain
From the ages of 16-18, we aggressively treated Callie’s Lyme disease with high doses of antibiotics. She took 14 pills per day, fought to keep them and any food she could manage to get in down and continued to do everything asked. Many days she could not get out of bed at all. Parts of her body would go numb or the pain would be too much. Sometimes she would have to leave school because her neck and back pain had become unbearable. Insomnia was also a big issue or as Callie called it lymsomia. Many days she wouldn’t fall asleep until 3 or 4 am and then we would drag her out for school because if she could move, she had to go.
Her teachers were beyond gracious and the school system could have easily made her go on homebound but she took all advanced/AP courses so we felt if she could get one day in class per week then that was better than having to self-teach herself all of the material. She barely attended high school yet she kept all A’s and pushed herself with the promise that God would heal her and the hope that she would be a college soccer player driving her.
One of the biggest hurdles to get through with this treatment was to keep all the pills down. Callie felt nauseated 24/7 and threw up every single day. Many days she only ate popsicles because that was all she could keep down. Because this was an issue she had to get two IV picc lines to receive her doses of antibiotics. So around the clock every six hours she got up, flushed her own lines and started her own IV medications.
I am still not sure how she did this using only one hand but that is her spirit in a nutshell. The medications were much harsher this way and often caused horrible side effects. Eventually, one by one her body rejected each of these meds until we reached the point that all antibiotics that could kill Lyme bacteria were now not an option because her body had rejected them all.
Deepest of Valleys
I’ve never felt the valley so deeply. I tried my best to keep a positive spirit around Callie. Most days I encouraged her that God told me he would heal her. Sadly, deep down I am human. I was completely full of fear she could not be cured. Honestly, I knew the one source of fear but it swallowed me. I had become her doctor and her researcher over the past six years and I thought I had to find the solution. Too many I’s in my sentence right? Right!
Sometimes being faithful just means going through the motions and you must step forward in faith even when you are overcome in fear and doubt. God’s plan is always better for us than our own and Callie and God was about to remind me that!
God’s plan revealed
Lymies clump together. Clump together to compare notes on meds, things that are working, or what on their body has gone south since the last time we saw each other. When you see another Lymie out you are just drawn to them for a hug because you are the only people that understand just how hard it is to be that sick.
During one particular lymie clump in Kroger a friend we had been able to help get properly diagnosed shared with us a different type of treatment. It was new to us, sounded completely crazy but what did we have to lose? We went for it! After four years of misdiagnosis, two years of harsh treatments in three days Callie’s Lyme was gone…not just a little gone….GONE! This is how God has planned to heal her!
Why so long?
I think it is easy to wonder why God didn’t put this treatment in our path years ago. Just like Kevin Bacon’s six degrees, this answer was only one degree away! The person who had successfully had this treatment lived in my hometown of Benton and was my gym teacher growing up and friends with my Mom! I’m not even sure she counts as a full degree away from us.
God’s examples are sometimes non-examples so that we can share what not to do. We can share a bad experience and use it as a teachable moment for others that we help along the way. God’s timing is often so we can grow and see his full majesty in the process. His glory revealed is often better when it is revealed slowly and we can fully appreciate the awesomeness that is God.
God’s timing is so that we may be polished. Before this season Callie was the shyest, and backward kiddo you would meet. If she could go a day with no attention she was a happy girl. This fire has transformed her to be a bold servant of God. She still doesn’t want you to look at her much but she boldly serves even where it’s not comfortable or cool.
God’s word is true. When he speaks, what he has told us in his word is all true. There is no maybe with God. Rest in Him in the valley and wait on him.
The bad guys:
I try hard not to come across as the crazy conspiracy lady. Really I do-haha! I do so for myself and those we try to help. If I sit and think how long Callie suffered and how absolutely unnecessary it is I can turn into a crazed Momma bear. But, Momma bear mode doesn’t accomplish anything and turns my spirit into something less than what God wants me to be which affects my witness and my ability to help others.
The bottom line is the American Medical Association and the CDC both are working against us. They continue to approve the wrong test for Lyme which unless a tick bit you yesterday will come back negative and even then it throws a false negative 50% of the time. Our doctors are not told about the Western Blot test through Igenex labs which isn’t a flawless test but it is the best we currently have. Some labs have even started calling their test the Western Blot test which has to be some sort of illegal. I’m not a lawyer but I may have to make that my next research project-ha!
The AMA will not allow doctors to treat patients on long-term antibiotics beyond a month for Lyme disease. OHHHHH but you can be on antibiotics for years to treat acne so that makes perfect sense! Doctors hands are tied, they cannot risk their license to treat it so why test properly? Lyme docs are watched closely by the AMA and even their fellow doctors and live knowing they are at risk. If you don’t believe me check out a Lyme page on Facebook. No one will say the name of their doctors. They are protecting them.
Because the AMA will not allow treatment beyond 30 days insurance will only pay for 30 days so many Lymies cannot afford their meds. At one point we were paying $700 per week out of pocket because our insurance wouldn’t pay for treatment. Sadly many Lyme patients eventually run out of money are too sick to work and die from Lyme. Everything works against you to get properly diagnosed and you will have to take it into your own hands. Don’t be afraid, you can do it!
Where We Are Now
Callie is now a healthy and active 20-year-old enjoying college and yes she did reach that dream of attaining a scholarship to play college soccer. Her favorite verse to share when she speaks of this season in her life is 1 Peter 4:13.
But rejoice insasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.