I recently received a comment from someone feeling absolutely spiritually exhausted. I read their thoughts and it brought hot stinging tears to my eyes and it made my heart hurt. I think what surprised me the most was a comment asking, “How do you stay positive? Praising God seems to come naturally for you, why is it so hard for me?” When I read these words, I realized that maybe I haven’t talked enough about how hard this is for me. Maybe I need to tell you more about the darkness that settled around me for a good long while.
I would never want to give the impression that I have Pollyanna joy all the time. I have been facing this trial for a long time, but two years into my Fluoroquinolone catastrophe, I was a mess. I’d had enough surgeries that we were long passed ten. I can’t remember exactly how many but I was into the teens. I dislocated my jaw while laughing at a wedding. Yes, my friend Laura is actually that funny. Be careful around her. Your jaw could jump off your face. I was banished to a liquid diet and ordered by the oral and maxiofacial reconstructive surgeon, not to talk. I had so much bleeding and swelling in the tempomandibular joint itself, that it forced my jaw opened and forward quite unnaturally. We needed the swelling that was causing the drastically poor alignment to go down, and talking would make it worse. To add to the dark hilarity of the situation, they mentioned that along with total rupture of both TMJ meniscal ligaments and the bleeding and swelling, they noticed a lesion/cyst in the middle of my brain on the MRI.
I talk a lot. I know I know, try to hide your complete shock. My mind is always busy, and not being able to talk was making me almost crazy. I was completely isolated in my own brain and I was in pain and feeling defeated. My brain was a dark place to be trapped. I had already been fighting a hopelessness inside me, but this was tipping me off the edge. Not only did I have this awful jaw injury, maybe I had a brain tumor too. I had already been hoping for any way out. I was walking in the awful painful shoes of someone who bore the effects of a Fluoroquinolone bombing in every cell of their body. I’d been praying for God to kill me if my body was only going to get worse. Oddly enough, the idea of a brain tumor was almost hopeful. I thought, well maybe if I have a limited period of time left here on earth, then I could hang in there till then. I feel terrible saying this. I know there are people with brain tumors and horrible diseases that could read this and think I am horrible. That they would give anything to have more days. I understand that too. I hope that if that is the perspective they are reading from, that they can tap into my inner fear with me for a minute. I’d had spontaneous tendon and ligament ruptures happening almost every 3 weeks for 2 years. They ruptured doing completely regular things like reaching for toilet paper, or laughing at a joke. I was that fragile. I was as fragile as your great Grandma’s glass Christmas ornaments. I was shattering. I went through times where my husband had to wipe me. There are few things as humiliating as that. I was in constant awful pain and instead of it getting better, it had only been getting worse. No doctor could stop it. The best they could give me was trying to pin and screw things back together, and hope I’d heal stronger than I broke. The doctors couldn’t tell me if this would ever end. There was absolutely no relief in sight and I felt like I was probably dying anyway, though this was a brutally slow and painful death that seemed it may go on until I couldn’t move any joint I had left. For a time, I had casts, braces, or some sort of immobilization device on all 4 limbs, as well as a bad neck from a previous spinal injury years before. The Cipro had escalated that situation significantly. I could only walk a few steps at a time and I reserved those steps to get me from my chair, to the bathroom and back. My husband worked insane amounts of overtime to pay for medical care. Our kids had to be constantly warned to be careful with me. They were very young and it broke my heart. I needed help caring for them. I felt like I didn’t know who I was anymore, I’d become a burden, and I truly wondered if my family would be better off being freed of me. I was broken in every sense. Broken mentally, spiritually, and physically.
I’d been fighting this downward spiral for at least a year. This just felt like the bottom. I suppose I have always assumed rock bottom would be the place where you actually were rooting to die, and I guess this is where I was. I didn’t want to commit suicide, because I didn’t ever want my kids and my husband to think that I thought they weren’t worth it enough to fight and stay alive. This thought always prevailed when a fleeting thought of ending it would skip through my brain. I couldn’t do that to them, but you know, the thought of a heart attack, a brain tumor, or being struck by lightening, didn’t feel as bad as slowly breaking every tendon and ligament in my body and turning into a pool of jello.
I did some very serious soul searching there. I was having trouble praying. I was exhausted in a way that couldn’t even be described and I was just done. I found out that the weird cyst in my brain was actually just a pineal gland cyst that I’d probably had since being formed in the womb. It wasn’t a problem. Now I had to figure out how to go on, without having a possible way out. I remember having a thought process one day. I asked myself, If I never get better, will I still believe in God’s goodness and serve Him? I had a moment of clarity. Yes I will. I do still believe He is good, and I can’t live and don’t want to live without Him. He is the reason for everything. I do remember making a promise to God. It was that if He wanted me to go on, I would still praise Him no matter what.
Over time I began to feel that even if I felt unsure of everything and I couldn’t figure any of this out and I still didn’t understand…I knew one thing. My soul still searched for God. My soul was always drawn to Him, even at the bottom of this pit. I still wanted Him. Even when I wasn’t formally praying, I would talk to that still small voice in my mind. It always whispered to my heart, to trust Him. I have trouble with this. I had so much fear about what the future could hold. I was like a ship that was sinking. I’d hit a huge boulder in my life and I was exhausted from constantly baling water. I kept looking up to this lighthouse and trying to trust that I wouldn’t hit more. It took me a long time to realize that trusting God, meant letting Him steer the boat as well as guiding me in. Amy, take your hands off the wheel. You can’t see what I see. I see it all. I see the tempests, the dangers under these waves, and I can guide you in safely. Stop trying to anticipate every danger and fearing the storm and the cliffs. I still have a plan to bring you safely home to me.
Without Him, I couldn’t figure out any reason for hope or purpose in any of this, and I’d experienced enough blessings in my life to know that He had to be real. Even in the midst of what could have brought even financial ruin, God took care of that too. It always seemed that overtime popped up exactly when we needed it. Things like this, are not coincidence and they were the types of blessings that were holding me together and reassuring me that even if God wasn’t fixing my body right then, He knew what we needed and was providing it. I did experience what I know was a miracle, a couple months after this. I was prayed for by ministers in my church, and that night my 8 year old son was told by God in a dream, that He would heal me, but it was going to take a long time and we would have to be patient. I talk about this experience in more depth in my book, but for the purpose of this post, I will leave it at this. I am glad that I wasn’t told right then, that five years later, I would still be waiting for that complete healing. I have improved, but I’ve still faced several more surgeries and a whole lot of pain. Though I look like I’m in my 30’s my insides feel more like a solid 75 and above.
How have I reconciled my soul over all this time? I look for the light in darkness. I look for every blessing. I try not to take any comfort for granted. I still have down days and I still wrestle with what decisions to make. I still wonder when that healing will be and I still wonder if it will be before I die. I wasn’t spared further moments of worry, but I was calmed in spite of them. I started this blog to keep my eyes on them. I wanted to have a place to come and focus on what God was doing for me and teaching me every week. I don’t see coincidences as coincidence. I see them as the light bursting forward in the dark, giving me enough focus to keep moving forward and trusting that God is guiding my soul to safety. God is my lighthouse while traversing these rough sea’s.
Psalms 18:2 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.
My soul is constantly drawn to God like a magnet. I know that when something is missing, it’s because I’m allowing more distance between my soul and God’s. I feel the emptiness and urgency that a flickering oil lamp demonstrates when it’s running low on oil. Nothing fills me the way that God’s Spirit does. There is no substitute. If I am running low on resolve, I know where to go for help. The scriptures are filled with impossible situations and miraculous solutions. I read the scriptures and if I really take my time and contemplate them, I usually feel the Holy Spirit wash down over me at one point or another. It usually fills my eyes with tears and reminds me that I am one of many billions of souls, who have faced the same battle for their faith. I have never found another bit of reading material that can move me to the degree that the scriptures do.
Psalms 61:3 For thou hast been a shelter for me, and a strong tower from the enemy.
When I am feeling defeated, it’s because the devil is an absolute jerk and that is exactly where he wants me. I can’t fight him alone. I have to call on God to give me strength and to protect me, lead me, and guide my thoughts.
I have to pray even when it is the very last thing I feel like doing. Not just pray casually, but pray the ugly stuff too. I pray the fear, the frustration, the desperation, and even my doubt. God already knows anyway. When I lay it all at His feet, He always lifts me up. I usually feel filled with a sense of peace after. Kind of like a screaming baby finally quiets down after they’ve used up all of their strength while wailing. Sometimes answers and peace take awhile. I’ve waited for some of these things, for long periods of time. God has never left me comfortless though. He has always sent something to encourage me, whether it was a card, a phone call, or an awesome chain of events…He always delivers. Like I said, I don’t believe these things are a coincidence.
Proverbs 18:10 The name of the LORD is a strong tower: the righteous runneth into it, and is safe.
Just as an oil lamp requires oil for it’s flickering flame, my soul requires God. Even when I’m lost, I’m still looking to God as my lighthouse. I only put my hands on the wheel to steer my vessel into it’s light and count on God to guide me into His safe harbor. I run to Him. He is my high tower, my lighthouse. My deliverer, and my shelter in the time of storm.
2nd Samuel 22:47-51
The LORD liveth; and blessed be my rock; and exalted be the God of the rock of my salvation.
48. It is God that avengeth me, and that bringeth down the people under me,
49. And that bringeth me forth from mine enemies: thou also hast lifted me up on high above them that rose up against me: thou hast delivered me from the violent man.
50. Therefore I will give thanks unto thee, O LORD, among the heathen, and I will sing praises unto thy name.
51. He is the tower of salvation for his king: and sheweth mercy to his anointed, unto David, and to his seed for evermore.
I look to this passage even in my circumstances with Fluoroquinolone antibiotics, and those who knowingly cover up this terrible danger. Yes, that makes me angry. I hate that there are people who overlook mass devastation, to keep gaining profit. It’s absolutely disgusting to me, but I pray for them. I pray God softens their hearts and pulls the wool off their eyes. I don’t wish any of this on them. I don’t wish it on anyone. I do wish and hope and pray that somehow and someday soon, that the pharmaceutical industry and the drug companies, admit the scope of this damage, and change the way they are prescribed. I was once offered Accutane for acne a few years ago. I declined because of the possible liver damage and calcifying tendinitis. Obviously I didn’t need that. My dermatologist at the time, said if I wanted to try it, I had to sign all of these medical releases. I asked what for, and she said it was to acknowledge that I understood the risks and I wouldn’t get pregnant while on it. That is what I’d like to see done with Fluoroquinolones. There should be a page that lists the DNA damage, the musculoskeletular, psychiatric, gastric, and neurological damage, that they cause. It should require them to state on this page that the effects are often permanent, and they should state the real rate these damage at. It looks a whole lot more like 100% of the time. I can tell you to read this NCBI link, if you want to see them state that every sample tendon they exposed to Fluoroquinolones, was damaged after a period of time. Here is a quote from their study. https://www.ncbi.nlm.nih.gov/pubmed/15890441 “Here we investigated aspects of the mechanism of quinolone-induced tendotoxicity in human tenocytes focussing mainly on the question whether fluoroquinolones may induce apoptosis. Monolayers of human tenocytes were incubated with ciprofloxacin or levofloxacin at different concentrations (0, 3, 10, 30 and 100mg/L medium) for up to 4 days. Ultrastructural changes were studied by electron microscopy, and alterations in synthesis of specific proteins were determined using immunoblotting. At concentrations, which are achievable during quinolone therapy, 3mg ciprofloxacin/L medium significantly decreased type I collagen; similar changes were observed with 3mg ciprofloxacin or 10mg levofloxacin/L medium for the beta(1)- integrin receptors. Effects were intensified at higher concentrations and longer incubation periods. Cytoskeletal and signalling proteins, such as activated shc or erk 1/2, were significantly reduced by both fluoroquinolones already at 3mg/L.”
Here was the NCBI study’s conclusion,” Our results provide evidence that besides changes in receptor and signalling proteins apoptosis has to be considered as a final event in the pathogenesis of fluoroquinolone-induced tendopathies.”
Um…call me CRAZY, but I think that is pretty stinkin significant! Maybe the paperwork should mention…you know, that everyone is affected. It only depends on their own personal DNA and cell structure and the concentration of Fluoroquinolones, and the length of time they are exposed to it. Go ahead, sign right here on the line that says, “I accept that I may be permanently handicapped, physically, and mentally. I accept the risk.” Well, come on! Sign it. What? That’s not okay with you? You want an alternative?
It should also have a line where the prescribing physician has to sign where it states, “I am prescribing this according to the FDA’s recommendation. This is a last resort after all other options have failed. If My patient is permanently damaged in a case where there could have been an alternative and I didn’t provide it, I assume all financial responsibility for their future medical care.” I wonder how many Doc’s would be willing to sign that. Okay, Fluoroquinolone rant tangent is over. Moving on.
The reason I talk about it is because I can do nothing to change this by myself. I have to trust God. He is my high tower. I trust Him to bring down evil in High places. I pray that all of us affected, can spread this word far and wide, and someday get this changed. I would safely say that this fight against the wrongful prescribing practices of Fluoroquinolones, is reaching a nice simmer. If we keep pushing and spreading and we don’t give up, this will eventually boil over. We just have to be diligent, and not lose hope.
I know that I have to trust God to watch over me where I can’t have the wisdom and foresight to do it myself. I trust God to bring this truth forward and I leave it in His hands and I ask to be led if there is more He would like me to do concerning raising awareness and advocating against the incorrect prescribing practices that plague the doctors office of this nation. This is all His fight. From Fluoroquinolone antibiotics to race wars, to, all out hate, North Korea, to Russia…His plan His fight. I am just a soldier taking orders from the King.
I was in the process of writing this blog post on Sunday. I took a break yesterday. It was a busy day, and I couldn’t dedicate time to concentrate. I always pray for God to lead me about what to write to you. He always sends some sort of reassurance that it was the right thing. Last night, I laid my head on my pillow and went to check the daily reminder scripture on my phone. It was a scripture I’d already used in this post. My mouth dropped wide open and I laughed out loud. My husband said, “What, what is it?” I told him, I just got a reassurance of exactly what God wants me to write, and I’ve already written it.” So I screen shot the scripture and that is the picture you see above. This is always awesome to me and never grows old. God is my high tower, my lighthouse.
I don’t have a better way to describe how I am feeling, but to share with you a song from my number one favorite Christian artist. Audrey Assad’s “I’m Drawn to You”
I love you each. You hang in there. God will guide us all home. He is our strong tower, our high tower, our lighthouse. Huge hugs!
Thank you, Amy, for sharing your very personal journey with your hand in God’s. One of the biggest doctrines in the Bible is that of thanksgiving to God. David in the Psalms was very real in his prayers to God and always finished his prayer with hope and thanksgiving. God called David a man after His own heart, in spite of all David’s human errors, sin, faults…David always came back to God, said the same thing about his sin as God did, and then rested in God’s forgiveness, mercy and strength. I see God in you and that same “heart of David”, and am humbled at your great desire for walking with Him. You are a great encouragement to so many looking for hope. Sometimes we don’t get relief, as you well know, but, hope and strength and trust in the only one totally trustworthy, in our great creator God, can see us through the rough seas and high water. Thank you for your testimony and I am praying for your healing and that God will make your days ahead strength filled, energy infused, and filled with His peace.
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Pam, thank you so much. David is one of my very favorites. I just so understand his broken heart in relation to his own sin. I somehow identify with his failures and then triumphs through repentance and relying on God. He just sounds the way I feel. I love reading his writing. Thank you so much for your prayers!
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I read all of your posts, but I rarely comment. All I can offer in the form of words is a ‘Thank you’, and that seems so insufficient. I know it’s not and I should always tell you Thank you, even if that’s all I have to offer. So Thank you for feeding me and giving me hope and inspiration through your trials and your writings that are inspired by God. My road has been long, much like yours, and I think you summed up very well the physical and spiritual battles and triumphs, and why we can still be so incredibly thankful. I told a friend on the phone the other day that I wouldn’t trade my disability for anything because of how it changed my relationship with our Father in Heaven. I told her that I didn’t believe that I could ever have gotten to where I am spiritually without the suffering. Some might think that sounds crazy, but that’s how it is for me. I know not everyone has to go through being brought down to a physical level of uselessness to raise up to know God on another level. But no matter how each of us get there, the important thing is that we do. I see now how a being mediocre follower of Christ is not a true follower at all…I love to read Paul…I feel like my mind is focused now on the unseen more than the seen. Who could ask for more? Ha Ha, it’s my turn to talk too much! Love you ❤
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Oh thank you so much for that! I do actually completely understand what you mean. You can’t put a value on the closer relationship with God. It’s priceless, and actually worth it. It’s not fun to live suffering, but Jesus did, and I think I finally understand a small piece of that now. Love you too!
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Many thanks to you, Amy…….again. Today, what the Holy Spirit wrote through you, was SO meant for me. I too, am going through a dark time. I cannot hardly believe how “similar” our stories are! I was on many horrific psych meds for roughly 20 years. Oh yes, I too have raised the alarm regarding the sad fact that there is no such thing as informed consent! Anyway, I am now back to the land of the living brains because for all those years, my emotions, thoughts etc. were NUMB! And I am now learning all over again, who I really am, and how to function without the drugs…..yes, a dark valley. And of course, the enemy plays “head games” with me; telling me I’m going crazy, that I’ve got dementia or now I’m paranoid! What a trip! All this too, drives me to the Lord. I know the feeling of being all alone in your own head. Thank you Amy for the reassurance that our God is in control. You, together with God, have given rest to my restless mind. God bless you……..
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I wish I could just give you a hug. Consider yourself hugged. You are most certainly not alone. I know that God loves you. He will help as you know. We can do all things through Christ who strengthens us.
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