Tag: lyme

A health update: Where I am with my Lyme Disease

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Another Lyme Disease update?

I bet you thought after three years I might be done with it. That would be lucky, but I haven’t been that lucky as of yet.

The truth is I’m on what we’re hoping is our final stand with the disease. I’ve said that before, but I’m actually feeling optimistic about it this time. For the last five months I’ve been doing great on medication, almost feeling 100%. I was certain that it was the end and that I could go off them. But the second day off medications I felt terrible again- not to the same degree as when I was at my sickest, not even close- but enough that I felt extremely discouraged.

I’ve been on more natural medications lately, but about three weeks ago my doctor put me back on antibiotics for the final flush. We’re pulsing the medications, which gives the bacteria time to come out of the woodwork before we kill them all. Lyme goes into a biofilm, which is a dense layer around the bactira that keeps it safe from antibiotics. Pulsing the medication helps it dispose of that biofilm because it thinks it safe to grow and reproduce again.

The first pulse of antibiotics and I felt as terrible as I did when we pulsed my natural medications, which did not give me the warm-and-fuzzies. But then, we did it again.

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My husband met and married me while I was sick: Finding love while chronically ill

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Photo by: Sarah Warden Photography

A few months ago my husband looked at me and said “I really don’t know who healthy Anna is.” And he wasn’t wrong. He met me when I was really sick with Lyme Disease, and I was still fighting it when we got married. I still am fighting it in a lot of ways, I’m still on medication. I’m still trying to get my “normal” back, but most of my life has fallen back in place. I’m blessed. I know a lot of people don’t get this far with Lyme, but something about that line hit me hard, he didn’t know who I was healthy.

We all are different when we’re sick, even if we have the same loves and personality deep down. It gets distorted by pain, our hobbies get dismissed because we’re not able to do them. We struggle to be ourselves when we’re ill. There’s no way to sugar coat it. I was a lot grumpier when I was at my sickest and definitely a lot weaker and less enthusiastic.

But still, I got the love of my life while coming out of this terrible illness. Someone fell in love with me when I was my grumpy unable self. That’s a testament to our love story for sure but it’s also more than that.

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Losing two years to Lyme Disease: What it taught me.

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I lost two years to Lyme Disease, there is no way to sugarcoat that. Two years of my early twenties got flushed down the tubes, they were spent in unbearable amounts of pain on the sofa. I couldn’t drive, couldn’t work, couldn’t see my friends, I used all my energy to bathe myself. It was difficult. It was terrible, but two years simply vanished in front of me.

It’s a harsh reality, but as we start this new decade I find myself not mourning those two years. It’s not because in retrospect they weren’t that bad (because they really truly where) it’s just that those two years played a special role in my life.

They taught me perspective and gave me sympathy for the sick and disabled in ways I’ve never experienced before, but they also reshaped me. You see, when you’re that sick and that unable you spend a lot of time thinking, you spend a lot of time evaluating, and dang, if I didn’t spend a lot of time praying.

Our early adulthood years are formative, college had taken my brain and worked on it and worked on it. My years on campus and in class had reshaped my brain, and some of that molding was amazing, but some of it needed to be left pliable for the realities of the real world coming after.

I feel like in a way I had a couple of buffer years. A couple of years where I was stuck in limbo and had time to purposely mold myself instead of just letting life beat me into shape. I don’t know if I would have taken all the time to think and process if I hadn’t been forced to. I think I would have kept on keeping myself too busy to be that deep in thought, too busy to truly reflect on my life. And it’s in that way that God used my sickness for good. He gave me the time I needed to take in everything and realize what I needed to work on and what I needed to change.

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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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Seven Things:

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  • Instagram is removing likes in Canada for a test run, would you be against it happening here in the US?
  • According to this article, about 10 milligrams of the gold in an average wedding ring came from the collision of two neutron stars 4.6 billion years ago.
  • Figure out what type of creative you are with this quick and beautiful quiz by Adobe!
  • For any fellow Lyme Warriors who have stumbled across my blog and are desperate for studies on medications, I found a collection of medications that have been proven to work.
  • Everyone knows they’re addicted to their phone by now… right? Well this article dives into that a little deeper and it’s an important read.
  • After looking for a bridal luncheon dress for months (and returning two tries) I think I finally found one. It’s from Abercrombie, which I didn’t even shop at when it was the go to place in the early 2000’s. The clothes online are nothing like I remembered and that’s a good thing.
  • Chelsea at Found in Translation shared this article with me in the comments of one of my posts last week. It’s giant collection of reasons the world is getting much better than it has been. Good news is the best news.

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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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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