I haven’t written much about my
awful, dark, difficult– once hopeless days…weeks…months…years of dealing with Lyme disease. It was such a hard season for me–and a time in my life that I had what is known in the Lyme world as “brain fog”–so forming logical thoughts, much less writing a blog about it was impossible for me.
But tonight–I received yet another email…from a mom that reached out to me because of this disease. She is now in the midst of the hard. And months ago I was able to encourage her. She checked back in tonight to let me know how things are going with her treatment–and I just thought, “You know–I need to encourage here too. Because you just never know what person in the THICK of Lyme–disease–or even any hardship for that matter might stumble across this post…and be encouraged.”
I don’t know what hard–bad–terrible–not–fun things happen to us. Some crazy folks will tell you that it’s because there is sin in your life. I had a few of those pray over me during my not fun time–and while they were praying I wanted to gently
or not so gently grab their hands off of me and say, “The Lord loves me. I love Him. And it’s not because I’ve done anything wrong that a stupid tick bit me. Some times really bad things happen to His children. And it doesn’t make sense. We just have to cling to Him through it. And honestly–if it doesn’t all work out like we want it to–He is still good. I wasn’t made for this world. Heaven is my home. And this world–well, Jesus said there would be many trials. BUT He has overcome the world. So I’m gonna trust Him no matter how hard it gets.”
If you are there. In the hard right now. I want to encourage you.
To cling to Him. Even if you aren’t that close to the Lord right now.
You must know that He loves you.
His Word says–you are fearfully and wonderfully made.
And He has a plan–even…for THIS.
My story is a success one. But I know in terms of healing in this world–they all don’t end like mine. BUT when they do–I believe we are to encourage one another.
While you are in the thick of it–hold tight and remember THIS for when He brings you through:
2 Corinthians 1:3-5, “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.”
We are to comfort and encourage others with the same comfort we received when we were in the thick of it. So this is my story of how Lyme disease changed me.
It was the summer of 2011. I had just stepped off the plane from Ethiopia with our 4th child. My husband–Richard–and I had been so blessed with 2 children early in our marriage. Then we were followed by what seemed like forever of not being able to conceive. This gave me an appreciate for the miracle of life that I hadn’t known or truly embraced–as well as a heart for adoption. We also helped start a school in Zambia, Africa during that longing for more children. The Lord was using our longing to bless more than just our family–and we were seeing how perfect His plan are even in the loss and disappointment of the unfilled longings of our own hearts. In March of 2008 while Rich was in Africa–I sat filling out adoption paperwork–and also feeling queazy took a pregnancy test to discover we were expecting! Our 3rd was born in November and shortly after–we picked up the adoption paperwork again–and in June 2010 landed on American soil with our sweet boy who at the time we weren’t sure if he would ever walk based on his diagnosis.
I was ELATED to be home with our 4th child whom we felt we had prayed over for years–and I was sitting out on my driveway watching all my little loves ride bikes on a hot July day (2011) when I felt something on my left shoulder sting. I looked to see a tick embedded in my skin–and not knowing anything about ticks or how to properly remove them–I squealed, yanked him out and rubbed the rash that was already beginning to appear on my shoulder. I truly didn’t think anything about it–nor did I think the 3 day “flu” that followed that bite was anything but the flu. So–I went untreated. For the first time that weekend, I experienced vertigo–followed by lots of vomiting and feeling like I had lead limbs unable to move. I just laid there for days–thinking it was an awful bout of the flu–and slowly each day I felt a bit better.
Days and weeks went by–and I was overtaken with fatigue. I had just started homeschooling our children after having one of our children tested for dyslexia. I kept telling myself that the fatigue was homeschooling PLUS an extra child–and with time I would adjust. Richard, my sweet husband, saw a huge difference in my energy (he says I make coffee nervous!)–and I needed daily naps now to just make it to 8pm. I would get so tired even after a night’s sleep (although restless sleep–insomnia is another symptom of Lyme)–and I would fall asleep at 10am while reading to the children. Only a couple weeks into homeschooling, we hired Karissa to come. Karissa had her elementary degree–so she would teach the children while I played with the younger kids and napped in the afternoons–OR I’d teach in the mornings while she played–whatever I could do…until I adjusted to homeschooling and 4 kids.
Months went by–and nothing got better for me. So finally–I went in for blood work. This can be challenging and frustrating for someone with Lyme’s because the testing out there–well, it’s not the greatest. The blood work came back from my primary doctor and she called me to ask me to come in. She explained I had some markers for Lupus or Sjogren’s Syndrome–and she was sending me to a rheumatologist. The rheumatologist guessed (because y’all–I’ve learned that’s what doctor’s do–they mostly guess and that’s why it’s called practicing medicine). I got a prescription for blurred vision (doc guessed it was dry eyes from Sjogren’s causing that) as well as some anti-inflammatory meds. But as I was leaving…I just didn’t have a peace…
I have to add to this part of the story…be sensitive to that when you do NOT feel a peace–and keep searching. So I didn’t rush to get the prescriptions filled. Instead–I made an appointment with infectious disease.
As the weeks past–I saw I felt like every doctor on the planet. I went to an infectious disease doctor as well as another opthamologist (my vision in my right eye was getting worse–and I knew it wasn’t dry eyes). I also schedule an appointment with a GI doctor and internal medicine. I had Western Blots and Elisa testing because that is what the CDC says you do–which I know know…um–that’s not always so accurate. Every doc had a different thing for me–and I just knew there was NO way I had that many problems. There had to be one thing causing all of the havoc in my body. I didn’t have quite enough bands for the Western Blot–really meaning I had probably had the disease by that point for almost a year. FINALLY–I went to another doc who suggested the CD-57 test and my score was terribly low suggesting that I had possibly had Lyme for quite some time at that point. Later I learned about IGeneX testing and before it was over–oh my…I was having my hair pulled out for testing even.
I started on antibiotics–just because from all the research and doc suggestions–that is just what you do. But over and over I felt like there was something else I needed to be doing. Then I thought back to the holistic doc that I had taken my son to after coming home from Ethiopia. The top pediatric pulmonologist in Atlanta diagnosed our son from Ethiopia with severe asthma. We were given loads of enhalers–all color coded for different times of the day. And once again–I had left…thinking–there’s something else I need to be doing. I took him to this holistic doc–to have him tell me that it wasn’t asthma at all. I assured him I saw the x-rays myself–but he assured me to STOP the inhalers and instead treat him for giardia–a parasite common in third world countries and orphanages. I also assured him he had ALREADY tested negative for giardia–which I later learned isn’t always the most accurate test either. I felt a PEACE. Took my son off the inhalers. And in 2 weeks–my boy was a DIFFERENT boy. No more thrashing at night. No more night sweats. No more wheezing. To THINK–I was giving my son and giardia lots of steroids…just what parasites need…right?!
This doc had been a God-send for our son–so I thought–why not try him now. He was the doc that said my problem was spirochetes (Lyme)–but with no co-infections (co-infections often accompany Lyme disease–and can wreck just as much if not MORE havoc in a body). He suggested the CD57 test to see where the infection was–and being as low as it was I began to think back to when I could have been bitten by a tick. Was it followed by sickness. And I sat there. Thinking. OH. MY. GOSH. That. WAS. IT.
I wish I could tell you it was an easy fix.
But–when the body starts healing…some times–it is even harder.
In the first few weeks of treatment–I felt like NOTHING was changing. Was I a fool to go to a homeopathic doc to treat Lyme? For real? At one point–I really thought I was dying. I would watch my little ones playing–and wish and pray that I could just be old enough to be an amazing grandmother to their children. I would long to be able to homeschool and play without needing any help. I would meet friends out and I knew by their faces I looked different…having lost weight and having red puffy eyes…and constantly pulling out supplements every couple of hours or meds or whatever. Oh my. Those were the HARD days. Days I now often forget. But some times…need to remember.
Adrenal supplements, immune builders, blood cleansers, digestive enzymes, powered vitamin C, colloidal silver…the list goes on and on and…it felt like on. We did anything and everything our doctor suggested. Richard even bought me a infrared sauna (thankful to have that gem now;). Gluten-free. Whole foods. A different way to treat Lyme–that is for sure…but after months and months and months…in the spring (after starting treatment holistically in the Fall)–I turned a corner. Not a “I’m healed corner”…but rather–I don’t need a nap and I’m not crashing every night at 8pm corner. My kids were starting to get their mom back…and about that time—we felt the Lord was calling us to host an orphan in our home from the Ukraine. It felt completely crazy to even consider–but I felt like the Lord was asking us to trust Him.
The whole time–I also just felt in my heart the words in His Word…”you are fearfully and wonderfully made”…and I really believe in some diseases–the body really can heal itself with the support, rest and nutrition it really needs.
In May we decided to host–and in June–a week before a sweet 15 year old girl from Ukraine arrived–the holistic doc said spirochetes were undetectable in my body. Because my western blots were not fully clear–by the CDC standards–it wasn’t Lyme–but I know now that this isn’t even the best way to detect Lyme. BUT because our main doc (like MANY doctors in the South that know very little about Lyme disease) only recognized the CDC way of testing–she cleared us to host because according to her I didn’t have it. That doesn’t by any means make it wise that we signed up to host–BUT we felt the Lord WAS calling us to host–and by uneducated folks…I guess you could say He made a way.
All in all–it was a 2 year battle for this momma. A little over a year of having it and trying to figure out what the heck was going on. And about 9 months of treating it through a God send doctor. We hosted–and the Lord wrote another MIRACLE story through it.
I also found out we were pregnant that summer. But at 11 weeks–we lost the baby. Something that is actually pretty common after Lyme disease. I had to wrestle so much with hating that disease–and feeling like it took so much time from my life…and possibly even a new gift…but instead of bottling it up–I chose to look forward.
Years before I would listen to people who were sick–and sadly…I wouldn’t listen. I didn’t know how. I didn’t understand. Some times–because they looked well…I wanted to just tell them to pick themselves up by their bootstraps and move on. Stop complaining. Yadda. Yadda. Yadda. But the Lord taught me some lessons that I needed to learn. That honestly…were worth it.
I needed to know and understand what it felt like to be helpless–and even hopeless.
I needed to know what it looked like to really appreciate EACH DAY–because you might not have tomorrow.
I needed to let my kids dance in the rain–and not worry about my house being clean…because I needed every memory to be sweet…not full of fussing–but rather memories.
I learned to let my kids help–and that it didn’t have to be perfect…but their helping was character building–even if the folded towels didn’t really look folded at all.
I needed to know in my bones–that just because someone didn’t look sick…that it really truly might be impossible for them to pick themselves up…because their illness could be paralyzing…and there are many diseases that are crippling although it doesn’t appear so at first.
I needed to see that there were people in my life that would be there–and it might just be 3 instead of 300 or even 30…but those 3–I know now. And I’d do anything in the world for them…as they did for me during my hardest days.
I needed to know–that no matter how hopeless things seem–there is still hope. Not because there are good doctors. But because there is a Great Physician…in Heaven…who I can trust. And that if He had chosen not to heal me–I could trust Him with my greatest treasures on this Earth–my husband and my children.
It’s been years since I heard the words “undetectable”…and like a crazy lady–I go back for testing every 6 months just to make sure. After losing our baby in 2012, we grew again through adoption–and today–I’m homeschooling 5 without help…and instead of watching my kids dance in the rain…I’m dancing with them. Through the help of the Lord and precious friends–I started an adoption/foster ministry that pours into moms by giving them retreats–a weekend to rest and remind them of the hope the Lord gives us–no matter our situation. And I say we are done growing by numbers–but not in Him…as we still have so much to learn and so much I know He can do through us as we continue to trust Him.
Three years ago I couldn’t have typed this blog because of my “fog brain”–but I hope today–these words have encouraged you that we serve a Healer–and even when there isn’t healing–He gives strength and there is purpose in every single hardship. Cling to Him through the hard–and constantly look for what He is calling you to do even when you can’t lift your head–because in those days–it may be simply to rest and trust and wait. Know that He is faithful–and maybe you just happened to stumble on this blog that I’m not sure anyone reads–just to be encouraged and lifted up today. If you are going through hard–know that I would love nothing more to pray for you and to trust Him for miracles with you!
May you know and experience and see His goodness through the hard days!! And may His mercies and goodness rain down on you all of your days!!
In His Love,