The last two days have been crazy busy with hospitals, doctors offices, tests, specialists and more lab work. I have been stuck with more needles in the last year than I have in my whole life combined. Today I think I am on the verge of receiving even more answers and that gives me hope.
I also have a thankfulness that I can’t describe. The word “thankful” just doesn’t do this feeling any justice. I am thankful today for a doctor who truly listened to me even though he doesn’t know a lot about CLD. He was willing to think outside the box with me so that I could get longterm antibiotics without having to pay hundreds or thousands to go see a Lyme specialist doctor. He even looked beyond my current issues and found something that could be causing some of my other symptoms. I am also incredibly thankful for insurance that will help pay for long-term antibiotics – something I wasn’t sure would be possible.
But even more than those things, I am thankful for the people who pray for me weekly, daily, hourly. And by that I mean they don’t just tell me they are going to pray for me. I mean they ask me to give them day by day specific prayer requests. They send me two page prayer emails, scriptures and prayer texts and pray over me at church. I am thankful for my friends who live out their faith by offering to babysit so that Ryan and I can get a much-needed date night and by taking my daughter strawberry picking and to the park so she won’t have to sit in yet another doctors office with me…even when these friends are in the midst of their own trials. That alone is worth more than gold to me. I am in your debt. (You know who you are.)
And by the way, for those of you praying that today’s appointment would go well – thank you for that because it did and I got exactly what I needed. Yay, God!
So to those of you who are in this amazing group of people, I am beyond humbled and so thankful. With tears streaming down my face, I sincerely thank you from the bottom of my heart. You have no idea how much this kind of love and support has helped me get through this season of my life. I don’t know where I would be without you. Thank you for living out scripture for me and my family to witness and for being Jesus’ hands and feet to us. I am so blessed to be a part of a church who truly knows what it means to be the body of Christ.
“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'” Matthew 25:40
“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.” Colossians 3:15
Overwhelmed by God’s grace. The message tonight at church was about healing. Sometimes we think we aren’t praying big enough prayers or that we don’t have enough faith when God doesn’t heal or perform the miracle we are begging of Him. I know in my heart that this is not the case but sometimes it is human nature to worry that way. His plans are bigger than we can ever imagine. Why He heals some and not others is a really hard concept to grasp. It’s been hard for me to understand as well. I know we live in a fallen world and our bodies will never be fully whole until we are with Him face to face. But this physical pain I have been in recently is something I have wrestled with God over lately. After tonight, I am no longer wrestling.
I have read the passage below a thousand times, even since going through this disease but I feel like Jesus personally read it to me tonight while He held me with tears in His eyes. The full weight of the scripture fell so heavy on my spirit. The words were permanently etched onto my heart.
The timing of this message being given just a day after my last post about my physical pain is more than coincidental. God is so good. As our pastor began his message tonight I almost said out loud, “Wow. Okay, God. I’m listening.” I was in tears throughout most of the message. Besides a couple of times in my life, it was the loudest and clearest God has ever spoken to me. I am so humbled and full of peace. I am thankful for a pastor who listens to God’s voice and is intensely committed to Him. I know this message on physical as well as spiritual/emotional healing spoke to many others there tonight and will penetrate the hearts of those who will hear it tomorrow but I definitely know beyond a shadow of a doubt that God wanted me to hear these words tonight.
The apostle Paul writes:
“…I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it’s all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”
2 Corinthians 12:9 (The Message)
Like Paul, I too have been on my knees – praying desperately for a miracle. It’s okay to keep praying for that. And I will continue to but I am thankful that he reminded me in such a loving way that if healing never comes, HIS power is made perfect in my weakness. The weaker I get, the stronger HE becomes. His grace is ENOUGH!!!!
Use me. Use this disease and any brokenness in my life for your glory. I am undone.
Since it is Lyme Disease Awareness month, I decided to write about this disease that has taken over my body and my life over the past few years. **Disclaimer: I’m going to be very transparent and brutally honest.**
Doctors don’t tell someone with cancer, “You are just depressed.” or “No more testing for your symptom of the week.” Or my personal favorite, “Just get more sleep.”I would hope that cancer patients don’t get told, “Well, you look healthy so I am sure you are fine.” Or “It can’t be that bad, ’cause you look great.” Who would say that to someone suffering?! No one. I have heard that not just once, but more times than I care to remember. I don’t have Cancer, but I have Late Stage Lyme Disease and I believe it is time for the medical community to take it just as seriously as Cancer. Lyme Disease is devastating and it kills.
The diagnostic tests for Lyme are terrible and extremely unreliable to say the least. Even though it is the most common infectious disease, there is currently only a handful of labs that offer a reliable test. (IgeneX is the best from what I have researched.) It is expensive, but to Lyme sufferers it is totally worth it to have lab paperwork that clearly shows that Lyme is present and active in the body.
Borrelia Burgdorferi is what causes my pain, immobilizing fatigue, tremors and neurological symptoms. It may have a funny name, but it is unbelievably damaging to the body even though my face may not reveal the pain, my make-up may help to conceal the dark blue shadows hanging under my eyes and lipstick adds color to my normally ashen face. In other words, most days I don’t really look sick. I have read of Lyme patients that have put up with it for 15-20 years or longer and they are still suffering from this torturous disease. Lyme disease is seriously misunderstood, but it shouldn’t be. There has been opportunity for the world to learn about it, but instead, doctors have turned a blind eye. Lyme awareness is slim to none in most states. Some doctors still don’t believe that Chronic Lyme Disease exists – they don’t even acknowledge it! If you would like more information on the political issues surrounding CLD, the movie “Under Our Skin” is a great documentary, that not only gives personal accounts of the illness, but explains in detail the controversy surrounding this mysterious disease.
From my perspective, much of the confusion surrounding this growing epidemic lies in the fact that there are no definitive answers and in some cases, there isn’t a clear end. Most of the questions I get pertain to when my treatment will be over or when I will I start getting better. Or as my girls ask, “When are you going to be yourself again?” I think that means, when are our lives going to get back to normal? It’s a hard question for me to answer. Actually, I can’t answer it. I have no idea. Chronic Lyme is a very complex, confusing and terribly frustrating disease. Even after successful treatment, there is no guarantee that it will stay that way.
The bacterium has a mind of its own. It’s a shape shifter. When the bacteria is in the spiral shape (spirochete), it can drill into organs and joints or go in and out of the brain causing devastating effects all over the body. But when treatment starts it goes into a cyst or even a granule form where it creates a bio-film around itself that protects it during treatment. Then it hides and survives in the lymph nodes and joints where it will lie dormant until treatment is done. Eventually – even years later, it can start reeking havoc on the body once again. It damages the immune system so severely that the immune system is completely compromised. A Lyme body is much more susceptible to toxins and viruses than a healthy body because of the compromised immune system, which may explain why sufferers have 50+ symptoms.
If, by chance, you beat the odds and are lucky enough to receive an accurate diagnosis, find a doctor that will treat you, have the money for the treatment (insurance usually won’t cover long-term antibiotics and definitely not alternative methods), the treatment works and there is successful eradication of the organism – even then there could be longterm, irreversible damage. It is truly a maddening illness. Sadly, it is not surprising the number of suicide related deaths among CLD patients. The diagnosis feels like a lifetime sentence.
I don’t think the general public realizes how serious tick-borne illness is and maybe, most importantly, how easy it is to contract. Fifty percent of ticks have some form of disease bearing bacteria in them and they are hungry. It only takes one attached tick – even if it has only been attached for a short time, to transmit bacteria. There is about a 1-2 week window to discover it or the bite and get anti-biotic treatment. Put it this way, if you thought you had an insect bite that was hardly bothersome or noticeable, would you go to the doctor for that? Nope! Neither did I. Many people don’t get the severe symptoms until it is too late to do the quick antibiotic treatment. It is a common misperception that the tick will be visible, will cause pain or will instantly cause a big red rash and flu-like symptoms. Sometimes it does happen that way, but not always. That is why prevention is of the upmost importance. If that 1-2 week window of opportunity passes, welcome to my world. It is incredibly hard to get rid of this bacteria and the symptoms only get worse over time.
During the height of tick season, ticks are in the “nymph” stage and can look smaller than a poppy-seed. In other words, they are very easy to miss. Many Lyme sufferers never saw a tick and don’t even remember being bitten. I didn’t. Nor did I have the infamous “bullseye rash.” I have never been a fear-monger and I’m definitely not trying to scare anyone, but I think I would be doing a horrible disservice to my friends and family if I didn’t let everyone know how to prevent tick-borne diseases.
Go to this link and it will give you clear instructions on how to keep from getting bit from a tick and what to do in case you find one attached. Click Here ——> Prevention
I admit that I really didn’t want to write a detailed post about CLD. My husband wanted me to. I’m actually getting sick and tired of talking about, thinking about and researching Lyme. I am writing this at 3am from a place of deep physical pain and fatigue. A place in which I have to be somewhat absent in my daughters lives because of this ridiculous illness. A place where I can’t give my husband one hundred percent of myself. A place where I don’t ever know from one day to the next just how bad my symptoms will be and what I will and won’t be able to do in a given day. A place from when I am asked how I am doing, I have learned to just smile and say I’m getting better because it’s easier than explaining all of this.
I am so weary of having a great day and being physically able to do more than one activity to just end up paying for it the next day and barely being able to lift my head off the pillow. I hate that my “normal” is going to sleep in severe pain and waking up in severe pain. Many nights I don’t sleep more than a few hours due to the discomfort. Often my joints feel like they are on fire. My muscles continually ache and are so stiff I can’t stretch or move very well. In the mornings my body feels so heavy and my feet too sore to take one step and I fall back into bed hoping that my family will get by without me a few more minutes. My left eye occasionally gets swollen, so my eye stays partially closed for periods of time. I have constant muscle spasms, headaches, light and sound sensitivity, heart palpitations, trembling/tingling/numb hands and feet, memory problems and slow thought processes. It is extremely difficult for me to do simple, everyday things like going to the grocery store where decision-making is almost impossible. I try not to go more than once a week because it is just too much. I feel like I have been taken out of life for the time being. My IV treatments alone total too many hours and moments of living that I missed, not to mention the years that have been hindered from participating in my own life.
My daughter had her first “real” elementary school field trip last week and I was going to go with her. I even signed up weeks in advance to go as a parent volunteer because I was determined that this illness wasn’t going to keep me from the important things in my life. But as the day got closer, I realized I had spoken too soon. There was no way I would be able to be there. Thankfully, Ryan was able to go in my place. He and Chloe had a great day together exploring nature and finding tadpoles and lizards. I am thankful that he was able to go. I am happy for that. But I am not happy that this disease continues to steal moments like that away from me. Like many of my friends and family members, I am also asking, “When will it end?”