I’ve been dragging lately. Fighting just to keep my head above water. Some days I feel like drowning, giving into the water pulling me down. Lyme disease is like a big body of water, surrounding me, waiting for me to give up and drown. I’m treading water as best I can but my muscles are sore and tired and about to give up, the energy in my body drained, there’s not much left, my soul is tired of the fight and wants to give up too. But I keep pushing my body to do what it shouldn’t even be able to do –  I keep talking my soul into keeping up the fight. It’s so tiring though.

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(Picture of me after an afternoon fighting a migraine/fatigue while putting on a happy face at a party, trying to enjoy herself, like everyone else around her.)

Typing this is using energy I don’t have much of. Typing this is using muscles that are sore and weak. And my brain is being taxed, trying to put together something worth reading. I’m tired even though I slept in and slept a lot. I’m ready for a nap but can’t take one since I’m alone with the kids. Standing up, I slump forward and feel this weird pull inside my body telling me to sit down, no, lay down, quick. The place where energy should slow is zapped dry.

I desperately long to be healthy again. To have energy like everyone else, to have strong muscles like everyone else, to have an alert brain like everyone else. I haven’t had these things for seven years. It feels like a life-time already yet I have a life-time left to go. I pray for my healing and it never comes. I keep praying. I take my herbs but they are mostly just keeping things at a tolerable level. It would be so much worse without them. As crazy as that sounds. I don’t have faith they will cure me and maybe that is why they aren’t curing me. I doubt it. They aren’t curing me because not enough is known about Lyme disease and there isn’t nearly enough research being done for a cure, or even a little more understanding of how this bacteria works.

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(my young son with Lyme disease too – a photo from the first year of treatment when all he could do was sleep and eat and cry.)

I talked to Adam recently about how frustrating this disease is and how frustrated the medical community is making me. They have their heads up their, well – you know. They are listening to outdated information. They aren’t opening their minds and hearts to the patients in front of them begging for help. They are presented with the bulls-eye rash and are telling people it’s not Lyme disease but rather just a spider bite. And those patients are listening to their doctors, because we are taught to do so, and because of their doctors bad advice, are going home with a raging infection in their bodies, that will spread to their brains, and will take their lives. Oh they’ll likely live, but they won’t live the lives they were meant to live. They will live like I live. Always sick, pretending to the world around them that they aren’t as sick as they are, because the world around them has gotten tired of hearing how sick they feel. They’ll go broke, their family might break apart, they might lose everything they worked so hard for just trying to get their health back – something we all should have the pleasure of enjoying. Oh how I ache for my son, for everyone fighting this disease.

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(Picture of my youngest son and I – Lyme warriors most days, Lyme victims some days.)

One day things will change for us. One day the powers that be will change their mind about late stage Lyme disease and will teach all the medical community the truth about it. One day there will be research and better treatment. One day things will turn around for this community that grows every year. One day couldn’t come soon enough. I’m afraid one day will be 20 years down the road. Meanwhile, we continue to fight through the suffering because that’s what we have to do. And some of us will choose to end the suffering, leaving behind their loved ones who will mourn their loss, and not only will Lyme disease have ruined the patients life, but will now ruin the patients family and friends lives through the loss of the patient. It’s a sickening cycle of loss and suffering and sorrow and sadness. And I’m sick of it. I want things to change so badly. We’ve lost far too many wonderful people to suicide because of their Lyme disease. To many great people have been lost to complications from the disease. And far many more will lose a good healthy life to it. Please God, make things change in my life-time, in my sons life-time. In all our life-times. We need a cure.

 

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