Lyme disease and the extremists.

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There’s this dark area where sick people aren’t being believed or listened to and it’s not only causing fear but it’s causing insane conspiracy theories and wild accusations.

Lyme is real, the CDC and doctors everywhere agree on it. They don’t believe in chronic Lyme though, and they say¬† that after the first round of medication you are completely healed. As someone who has had the first round of medicine let me tell you, it wasn’t enough, and had I been given more treatment right away I probably would be well, but instead I was given time for that infection to spread. I had to find more treatment in different ways and because it got so bad I had to learn about other ways to support my body that might not be traditional (I talked about real medicine and fake medicine here). It’s been a hard road, but some doctors still stand by the fact I was well after the first round of treatment. It’s the same thing¬† they have told countless others who are still very much sick. The worse they get the more they make them spend on tests trying to find something else, or worse tell them it’s in their heads.

Of course people go nutty, but the level of distrust doesn’t just lead to sick people, it has lead to something else entirely.

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Lyme Disease: Updates and the idea of staying sick for good.

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My doctor and I had a conversation the other day about my Lyme disease, and how I need to be prepared to be on some type of treatment for the rest of my life, even if it was something small, like a pill a day. He said that he’s pretty positive that he can get me to the point that I feel healthy again, but told me that Lyme bacteria often comes back, and consistently fighting it is probably the only way I can continue without a terrible relapse that takes me back to where I started.

Hearing something like that, even when you knew it was possible, kind of makes you step back. It makes you quiver for a second and thing, “oh, I’m never getting rid of this.” It makes you realize that your life will never go back to what it was before you got sick.

It’s disheartening to say the least, and it’s really easy to focus on that rather than to focus on the other part, the part where he said that he can get me to the point I feel healthy again even if I am on a small amount of treatment. It makes you overlook the word small in front of treatment. When I took a moment I realized that and when I did I tried to readjust my attitude. I’ve talked about my current relationship with Lyme before, about how I’ve made peace now that I’m well enough to live my life, but still am desperately wishing I could finish the process.

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Lyme, empathy, and trying to only leave the first behind.

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When you compare Lyme Disease to non-terminal cancer it makes people uncomfortable, because most people don’t realize how intense and disabling the symptoms of Lyme Disease are. It’s understandable, but that doesn’t change the fact that Lyme is that terrible of an illness. It put me through so much pain I would lay in the tub for thirty minutes before working up the energy to bathe myself while sitting. It was agonizing, it dropped me head first into depression. It was life altering, in a terrible way that makes you a better person much later on, once the worst is over and you can see the light.

I’ve been depressed before. I’ve been depressed more times than would be considered normal, because I also have bipolar disorder and depression just kind of comes with it. But this was a different kind of depression that I had never known.

Every time I’ve spiraled down it’s given me empathy when I emerge. I feel for people struggling with their mental health because I can at least start to understand it having struggled myself. Lyme’s gave me empathy for people struggling with their physical health, something I hadn’t really known to this level. It helped me understand the pain of others. How broken certain systems are. And it got me eye to eye, face to face, with a whole different level of suffering.

It’s not something I want to forget, though it was terrible, though I never want to have to feel anything like it again, it’s not something I want to forget. I want to keep this deep empathy. I want to stay alert to peoples suffering. And I want to do all of this while also allowing myself to move on once I get completely better.

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Giving and Taking Health Suggestions: No, you don’t actually know the fix.

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Suggestions normally come from a good place. We want people to feel better, we think we know a way to help, so we share. But lets be real here, every mental or physical illness can not be healed by the latest fad diet or the new “it” supplement and offering them as a cure all can honestly be very rude and condescending.

Of course I’ve tried to heal from Lyme Disease, of course I’m still working on it actively. I’m not better yet, I’m not just going to give in and submit to it. I’ve found that there are some things that seriously work, but they normally aren’t the things suggested to me by everyday people. They are things my doctor suggested or things that other people with this disease had work for them. They aren’t things that your best friend sells (hello oils) or diets that your mother in law did for her energy (hello keto).

Having an endless line of suggestions that probably won’t do anything aren’t helpful, they’re just saying ‘you clearly aren’t trying everything to get better.” That’s normally not what people mean when they suggest them, but that is normally how it comes off. It also comes off as people thinking they know a lot more than your doctors about science and yourself about your body. Neither of these is true.

That’s not to say that all suggestions are rubbish, some of them might help. How does one pick which ones to try and which ones not to?

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What my chronic illness can teach those who are healthy:

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I backslide in my treatment over the last few months.

Not a ton, mind you, but any backslide is still a regression and it wasn’t one I was happy about. But there was still a lot to be thankful for. I still feel way better than I did when I started treatment over two years ago. One more antibiotic is annoying and it makes my stomach hurt, but it’s still less than I was on. I’m still able to work and go about my daily life, and that’s a big deal, because two years ago I could hardly move from my bed to the couch. Plus, now that I’m taking it, I’m starting to steadily make back the ground that I had lost.

But there’s an important thing to point out. The antibiotics are important but, I only feel like they’re working when I’m taking care of myself. It’s a tricky thing, but finding health with Lyme is a fine balance of taking care of yourself and taking your pills. I find that the pills allowed me the ability care for myself by helping reduce my pain and my fatigue, but without the diet, the exercise, and natural treatments, I might as well still be sick.

It brings me back to all the lessons on health I had learned before Lyme Disease.

We push aside daily wellness when we’re healthy enough. When we don’t have a chronic illness, when we don’t have a disease, or a disorder. Our bodies are functioning and that’s enough for us, we don’t feel like we need to do all the extra work for them to be at their best, because good enough is good enough.

It has a lot to do with our own laziness, our own gluttony, and all the pleasure we find in things that aren’t very healthy to us. It really dawned on me after a few weeks of giving this lifestyle my all so I could get better. I thought “when will I be better enough to stop all of this?”

That’s right, I wanted to know when will I would be better enough to stop being healthy.

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Fake medicine, real medicine, and their role in Lyme disease.

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There is a growing group of naturopaths claiming to cure everything with natural approaches and homeopathic medicine. A lot of us with chronic illnesses end up falling into their hands when traditional medicines turns their nose at us and tell us we aren’t sick, when we clearly are and have been deteriorating quickly. They like to tell us it’s in our mind or they misdiagnose us since our diseases doesn’t have accurate tests and in the case of Lyme, those tests more often than not throws false negatives.

Those of us suffering with Lyme’s become desperate and frantic trying to find someone to help us, so we go outside of traditional medicine. Is that the right place to find help? We can only hope so, because they seem to be the only people willing to try.

I got pushed out of traditional medicine with a harsh kick. Nobody would help me, so we tried a homeopathic doctor. I was skeptical throughout the process. Some of the things she talks about were proven false. She mentioned being about to help my bipolar through diet, and that she could heal me from it, never mind that its a genetic mood disorder. The wifi isn’t really changing how your body reacts to things and the idea of crystals helping anything comes from old school witchcraft and have no base in science. I was on guard the entire four months I was there, even more so seeing as she was selling herbs and supplements out of her practice. Which is highly unethical and she would have lost her license for doing that if she was in traditional medicine. Everything was expensive. I didn’t notice a difference in how I felt after a lot of treatments.

But- some of the things she suggested have been studied, some of them did make a difference in the way I felt. Some of her concepts weren’t so far off the track I needed to be on. I needed to be helping my body detox, but it wasn’t through green juice and mystery homeopathic drops, it was through sweating and Epson salt baths, ways people have been healing themselves for centuries. I did need to be on some supplements, but ones that list every single ingredient that came from an independent source. There are a lot of supplements derived from foods that help boost your immune system, support your liver, and even have antibacterial qualities. I needed probiotics to keep my gut from being destroyed by treatments. I needed to cut sugar to help with the inflammation, but I didn’t need to clean my diet of every food I’ve ever loved.

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Life Updates: About my current relationship with my Lyme Disease

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I have a lot of posts sitting finished in my drafts right now, but another one is itching to come out of me.

I’ve been sick with Lyme Disease for over two years now, a year and a half of that almost completely thrown away, wasted as I wasted away on the sofa. The disease came sudden and it came fast, but it’s been sticking around ever since. I wrote one big post about it but it hardly goes into the hopelessness. It can hardly express the pain.

Truth is, I’m doing much better now. My doctor has pulled me off a lot of my antibiotics, though recently I back slide and had to have some reintroduced. I realized that I hadn’t shared that Monday night after even more people asked me if I was finally well. I’ve been asked that a lot actually. It doesn’t bother me much, I understand that I seem well. I’m almost at a normal activity level, I finally feel like I have my life back. I’m very happy. I can see how it all could appear to mean I’m finally healed, but I’m not yet. My Lyme isn’t in remission. I’m still actively fighting it every step of the way and it’s hard. It’s really hard. Sometimes it frustrates me to tears, but more often than not it’s lit a fire in me.

I hate calling sicknesses a blessing, but God has a way of taking curses and making them bow to His will. And He’s done that with this one. He’s given me so much perspective, so much hope, and He’s taken my world view and blended it so much that even in my fear I can see how truly blessed I am.

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