Are you plugged in?

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We plug in our cell phones, our laptops, our iPads . . . all of the gadgets that we need for everyday life. But what do we plug ourselves into? What is our outlet? Some of us have outlets for stress. I know mine used to be kickboxing. My husband’s was jiu jitsu. The harder I kicked and punched, the better I felt. I guess he got his aggression out by choking people. On paper we sound like a very violent family, but in fact it’s quite the opposite, I promise. You’d never know it from that description, but we’re quite a loving family!

I’m having a super Lymie week. As i sit here and type, my skin feels like its burning, my head is throbbing with a migraine, my legs are aching like I just ran my first 5K and I’m so tired, I struggle to keep my burning eyes open. I don’t say that to complain, but to paint a picture. We went to church last night, because we’re trying to cram in as many Wednesday night services as we can before school starts back up again. We would go to church seven nights a week if we could! We absolutely love our church, the people, the missions, everything! We missed last week, because I was feeling so crappy, but this week I pushed myself . . . I needed to get my fill, or as our friend says, “Get my G.O.D on!”

We settled into our seats and as the music started, I realized it wasn’t going to be the night I had hoped for. I tried to convince myself that I could do this. My love for the Lord was stronger than the pain of my migraine. But with each note sung, I cringed in pain. Eventually, I had to get up and walk out into the hallway. I stayed there until worship was over and the pastor started the bible study. Even during his study, I had to excuse myself once again to take my pain medicine. The pain was unbearable. I sat with my head on hubby’s big shoulders, eye’s closed, not even able to lift my bible.

Before I came back in, a friend of mine (co-lymie) came to check on me. She could tell by the look on my face when I walked out, that something was wrong. I was so upset that Lyme was “winning.” It was taking me away from worshipping God of all things! She warned me that the enemy would try to use Lyme to pull me from everyone in my life, including the Lord.  We chatted for a bit, said a quick prayer and then walked back in.

At the end of the bible study Pastor Harry did a specific alter call. He asked anyone who was sick to come up front so the entire church could pray for them. Several people walked forward. Hubby nudged me, but I didn’t move. There are others that are “really” sick that need prayer, I thought to myself . . . . I’m fine. Then Pastor Harry looked at me, smiled and said, “Lisa, come on up here.”

As  I made my way up to the stage, tears ran down my face as my fellow Christians held my hand and prayed for me and those around me. Tonight the enemy would not win. Lyme would not win. I may not have learned much about the book of Revelations or got my G.O.D. on like I wanted to, but my battery . . .  my spirit . . .  was charged. I was covered in prayer by so many people. I left last night feeling so blessed and thanking God for so many things, including Lyme. That’s the kind of outlet we need. Not letting off steam at the gym after work, or finding a hobby to de-stress. We need to get plugged in at church, with people that will draw you near to the Lord and strengthen your walk not get you obsessed with something that will tear you away from Him.

2 Corinthians 6:14-18 

14 Do not be yoked together with unbelievers. For what do righteousness and wickedness have in common? Or what fellowship can light have with darkness? 15 What harmony is there between Christ and Belial[a]? Or what does a believer have in common with an unbeliever? 16 What agreement is there between the temple of God and idols? For we are the temple of the living God. As God has said:

“I will live with them
    and walk among them,
and I will be their God,
    and they will be my people.”

17 Therefore,

“Come out from them
    and be separate,
says the Lord.
Touch no unclean thing,
    and I will receive you.”

18 And,

“I will be a Father to you,
    and you will be my sons and daughters,
says the Lord Almighty.”

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New Reality Show: The Ride of Your Life

Ever sit back and look at the people around you and wonder what’s going on in their lives? I do it all the time. I try to imagine what sort of trials or issues people are going through. You never know who’s happily cruising through life and who is battling hardship after hardship. Unless you have your own reality show – which isn’t that hard to come by these days, no one really knows (and even on those shows, you only know what the producers want you to know).

I wonder what the people in the cars surrounding me thought today as I tried to hold back my ugly cry. My sunglasses hid the tears, but I couldn’t do anything about the boo-boo lip and the sobbing. Did they think I just got diagnosed with cancer, left my husband, lost a job? I’m pretty sure no one thought, “Hey, I bet she’s upset because she just realized her Lyme infection is back!”

But that’s today’s episode of my reality show. As the symptoms of my sinus infection started to consume my thoughts, it dawned on me that my very first Lyme symptoms mimicked a sinus infection. Then once I did the math, I realized that it had been just about six weeks since we stopped treating Lyme and started treating Bartonella. — Side note: it takes Lyme bacteria approximately 4-6 weeks to reproduce. — I flash backed to almost one year ago when I had a bad sinus infection that wouldn’t go away. Antibiotics would help temporarily, but as soon as I finished them, the symptoms came back with vengeance. That’s when I landed myself in the hospital where this whole Lyme investigation began.

As upset as I was coming to the realization that my battle wasn’t half over (thinking the Lyme was officially gone and it was just a matter of time before the Bartonella was cured) I remembered the comfort I felt just yesterday, when I realized WHY this was happening . . . to write this blog and be the light for others. I had to remember that no matter how many ups and downs there would be, that this life is not my own.  Life is just an amusement park and God is the gate keeper. Each trial that we go through is it’s own ride and they all have a purpose. We may not understand it or even enjoy it, but then again it’s not for us to understand. He has me on this ride for a reason. So, I’m strapped in, the seat belt is on – and although I hate going in circles, I’m on the Tea Cups now and I will suck it up. No matter how many vicious circles I have to go through, or how nauseating the experience may be – I will not get off. I will hang on til the end. And for those of you who know me, you know how much I HATE going in circles!

There’s only one circle that I like  . . . the circle of marriage. It has no beginning and no end. Mark 10:9  Therefore what God has joined together, let no one separate. As I was doing the embarrassing ugly cry on the way home, I got a surprise text from Hubby letting me know he was coming home early. I am so thankful for a husband that not only keeps our circle together, but has over the past few years tightened it, bringing us closer than ever. But I am even more thankful for a God who knows when I’ve had enough of the spinning and will send my Prince Charming to ride along with me, always giving me  a strong hand to hold and someone to hold my hair while I puke my guts up. th

Is it all in my head? Or maybe my heart?

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I spent seven days on the quiet, peaceful beaches of North Carolina. There was no laptop, no smart phone, no email or access to work. Although there were two families, four adults and eight children it was actually very relaxing. Once again, I had that exciting moment when I was convinced that I was healed. I spent mornings relaxing on the beach soaking up the sun, afternoons attempting to surf, evenings racing the kids on the beach and nights playing card games with friends. I even stopped taking all of my meds.

We returned on Saturday morning and was back to the grind on Monday. By mid-Monday the migraines and exhaustion kicked in. I emailed hubby and told him that it was official – we had to move south. In order for me to stay healthy, I need warm weather, beach and ocean. Hubby agreed. We were moments from packing up and moving across country just a few years ago, so the possibility of us actually doing it are pretty good. It’s just a matter of time – and God’s will.

So, the question is . . . . am I making this all up? Am I really sick? I’ve got the blood tests, baskets of prescription pills, diagnosis from Lyme specialists, yet I still doubt that there is something physically wrong with me. This disease plays such mind tricks on you, that even when you have a diagnosis, you find your self questioning everything. How is it possible that I can feel amazing just a few days ago and one day back in my “normal” life, throws me into a Lyme coma?

In this case, the answer is simple. A mini miracle. Yes, you heard correctly. My second day on vacation, I was up all night tossing and turning. Typically when my head hits the pillow, I’m out. So, I knew something was up. Was God trying to tell me something? I got up, grabbed my bible and sat out on the deck. I picked up where Pastor Lloyd Pulley had left off (I listen daily to Hope FM on my way to work – Pastor Llyod gives me my daily fill – I was actually excited when I moved further away from work, because I knew I’d be able to hear his entire sermon every morning now) Mark Chapter 9:23

23 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”

24 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

After asking time and time again what this meant for me, I got up, put the bible down and walked towards the ocean. I had visions of me going into the water and being baptized like John the Baptist. I walked up to the pitch black ocean, the waves poured over my feet, I hiked up my sweat pants and went in up to my knees. I felt as thought Jesus was sighing and saying, “Really? That’s all you can give me?” WIth that, I continued forward, fully clothed into the ocean. Once the waves were up to my chest, I turned, fell back in the water and baptized myself. Was I healed? Was that all it took? I ran back to the house, woke up my husband, shared the experience and sobbed with excitement. I dozed off with a bit of a headache and a few muscle twitches which led me to doubt Him already. But I knew I had to trust . . . . I had to believe, even if it seemed too good to be true.

So, you might be asking, “If you were healed, then why did your symptoms come back the minute vacation was over?” I asked myself the very same question. I learned that God allows temporary “breaks” or time periods where he cures people to give them a bit of a reprieve from what they are going through . . . to allow them to once again enjoy life and their family. That’s exactly what he did for me.

Two weeks later, I went back to the Lyme doctor, blood work proved that I was still sick, in fact I now had some additional items that needed to be addressed. I left the doctors office frustrated, tired of treating something that may or may not be there – I was still confused about my mini miracle and whether or not it was worth the time driving 3 hours to the specialists, spending hundreds of dollars in prescriptions every month, and agonizing side affects. I should just suck it up and deal with the stupid Lyme. Everyone has aches and pains, I should just get over it.

It was hubby that reminded me how far I’ve come over the past year. He reminded me of what a mess I was prior to these hard core antibiotic treatments, spending the entire day on the couch, not able to function as wife or mom. I couldn’t turn back now, we had come so far. And my mini miracle was just a glimpse into the life that I could once again have.

But it wasn’t easy – and I didn’t listen to hubby right away. It took God working through Pastor Lloyd again to reach me. This one particular day on my way to work, he was talking about how important prayer life is and how without it, it’s like trying to treat a serious illness like LYME disease without antibiotics! (What! No one ever mentions Lyme, it’s like the red headed step child – no one understands or cares about it) It not only justified that I was sick, that Lyme is for real, that it is serious, but made me realize that I can’t stop treatment now.

I got it – I heard God loud and clear. Stuck to the plan, swallowed the horse pills like a good girl and kept on chugging. But, it got old fast. After two weeks of new drugs, we leveled out my thyroid and liver (I think) and then slowly had to build back up to the double whammy antibiotic treatment, that just a few months ago had me laid out in bed, crying from pain. Joy – can’t wait to get started on this again. But like a good little soldier, I marched on.

Fast forward a week or two to today . . . I’m driving to work BEGGING God to take Lyme/Bartonella (whatever crappy bacteria is doing this to me) away. If Paul could beg three times to have a thorn removed, I figured there was no harm in me asking. I was tired of asking for strength and patience and everything else . . . just take it already! I’m done. I didn’t care about His plan. I didn’t care why anymore. I just wanted it done. Enough already!

I was half listening to the radio as I pleaded with God, catching myself bargaining with him about what I would and wouldn’t do if he took this disease away, when I heard Pastor Lloyd talking about an Elder in his church that was suffering from cancer. He spoke of those Christians who suffer the unimaginable and yet go through life with a smile on their face. It reminded me of why I started this blog . . . to be that type of Christian, to have that kind of impact on others. To remind them that no matter how dark that valley seemed, that Jesus was the light. What was I doing? Wallowing, complaining, giving up . . . that’s not the warrior that I used to be, the warrior that knew that God allowed Lyme to come into my life for a reason . . . so that just like my Autism fight, I would fight for those that have Lyme and either don’t know it or want to give up fighting.

He talked about his friend with cancer and how there were certain days when he begged God to just take his life – end it all. It was too much to deal with. But like a good little soldier, he worked through it and continued on. This particular friend/Elder of the church also happens to be a blogger who helped so many others that were affected by cancer. I immediately felt a sense of relief . . . I knew I could stop begging for God to take this, because I understood WHY I had it.  In fact, giving up wasn’t an option. I HAD to fight Lyme and I had to get back to writing about my journey and how I will not let Lyme rule my life. I will conquer it. And like a good little soldier I will use the armor of God to get me through it.

So, I apologize for the long, over due post – but I felt like I had to fill you (whoever you all may be – friends, family members, strangers or fellow Lymie) on what’s happened, why I’ve been distant and what I’ve learned.

What can you take from this? It’s cliche, I know  . . . but never give up. “Everything is possible for one who believes.”

Mark Chapter 9:23

The online Lyme community averages about one suicide per month—a tragic statistic, neck in neck with military veterans. Both groups that have been failed by the system.

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I had to share this post with you about a fellow Lymie. This is not my blog, I am simply sharing it.

———-

Heather Askeland wasn’t just a Lyme friend. Over the past almost four years, she had become a close friend. At this time, I’m trying to grieve both a personal and communal loss. In this moment of overwhelming sorrow, I feel propelled to address something I thought I’d never write about—suicide in the Lyme community and factors behind it.

At the same time, in this entry I’d like to honor the memory of my absolutely incredible friend through the ways she affected both me and the world at large.

Please note: Any personal matters I share in this post were publicly shared by Heather on various websites such as YouTube, her donation page, Facebook and other community sites, and therefore I feel are not a violation of her privacy. I don’t claim to know everything she went through toward the end of her life, and I’m sure nobody does. But I include details of her struggle that I feel are relevant to the topic—both her story and Lyme suicide at large.

The online Lyme community averages about one suicide per month—a tragic and shocking statistic up there with military veterans, both groups that have been failed by the very systems set up to help us.

I think this issue needs to be talked about. And I think that, while Heather’s life was obviously uniquely her own, there are underlying commonalities in the Lyme experience that push people to take their own lives at an unreasonably higher than average rate.

When news broke of Heather’s suicide, reactions varied—as they typically do—from despair to disgust. Folks ascribing to the “suicide is selfish” and “she should have gotten help” type logic were quick to voice their opinions. To those people, I would ask they take a step back and try to get inside the head of a person so void of hope that they want to die. Just try.

Imagine, as in Heather’s case, that your mother had just passed away, you just broke up with your significant other, you had to withdraw from your exciting graduate school program, and found yourself quickly homeless, broke, and sicker by the day.

Now imagine experiencing all of the above while an infection raged in your brain. Not just any infection, but an infection that alters your perception of reality, depletes your brain of neurotransmitters (such as serotonin and dopamine), and impairs your ability to eat, walk, or speak coherently. Imagine you’ve become debilitatingly weak, virtually bound to your bed, living in and out of hotels thanks to generous donations, and continuously sicker by the day in spite of access to acclaimed Lyme treatments which have, for whatever reason, been ineffective on you.

Maybe knowing that Heather went through all that can elicit a sympathetic response from the more judgmental audience. As I always say: less judgment and more compassion makes the world a better place.

Let me be clear: While I certainly don’t encourage or condone suicide, and wish with my whole heart she was still alive, I can understand why she lost hope. I think it goes without saying that a suicidal person should seek help, but it’s also a reality that often a suicidal person can’t see past their crisis, and doesn’t want help.

Here’s the thing.

What non-Lymies don’t realize is what a beast Lyme is. And herein lies one of the most fundamental problems in the Lymeshere. People chalk up Lyme behavior to “mental problems” without understanding why. Sure, most—if not all—late-stage, neurological Lymies have mental problems, but they are based in the biological and physiological. Simply put, we have actual brain damage. We aren’t just whackadoodles.

Why is it that Lyme’s closest relative, syphilis, can be acknowledged and validated for how it alters people’s behavior, but Lyme is still commonly dismissed as insignificant. I knew Heather well enough to know that she felt painfully invalidated and criticized for her unwellness, and that itself is one of the main tragedies that propelled her toward destruction.

Heather’s deep-rooted feeling of being misunderstood, judged, and invalidated is something that Lymies know far too well. And it’s a horrible shame. We feel it from family members, society at large, and our own doctors (until, exhausted by doctors appointments, we stumble upon one who’s willing to help us). In addition, our treatments aren’t covered by insurance. You heard right! Treatment for Lyme is so insanely expensive that most people either go broke paying for it or won’t even start it because they can’t afford to.

As if that’s not bad enough, the treatments are very hit-and-miss. While some people do in fact recover, a lot are left just as sick (or sicker, even, than before) after doling out tens of thousands of their own dollars.

The system is broken, plain and simple. And until more research is done to find better, more effective cures, and doctors are willing to step up and acknowledge chronic Lyme disease, and health insurance companies are willing to cover treatment, and families start validating the reality of the Lyme experience, people are going to keep taking their lives. I hate that I’m even writing that, but it’s true. ————–

Think about the way Job responded to devastating circumstances. Job lost seven sons and three daughters in one unimaginable day. And that was in addition to losing all his possessions and his health. But what did Job do? The Bible says he did not charge God foolishly (see Job 1:22, KJV). Instead, he cried out to the Lord. I am so thankful to my husband who brought me back to the Lord, so that I can not only ride out this Lyme wave, but conquer it. I pray that my blog may help someone in Heather’s shoes cry out to Jesus instead of the alternative. Please pray for Heather’s family and the Lyme community as a whole.