Where Did That Come From?!?!

Words. Nothing more powerful. More encouraging…..Emotive. Destructive. Attractive, And about as many more adjectives as you could come up with.

But that first word, powerful is maybe the one that overshadows the rest, and gives all the other adjectives their weight. Also the one we maybe too often forget.

Words that carry the most weight and power are often fueled by the most driving force in our humanity: emotion, and that is both wonderful and scary depending on the circumstances.

I’ve been thinking lately about my communications and where my “ugly” words come from. Not necessarily horrible, but just the ones that come off wrong, are misinterpreted, lack tact and just in general convey a “me” I don’t like.

Where do those come from? Well, after some thought, I believe they usually they come from places of fear, hurt, desperation, frustration, and the like.

There have been a couple instances lately where maybe the gist of what I said was fine, but in hindsight I really didn’t like the reflection it painted of myself to the person I was communicating with and maybe caused hurt or frustration.

The most recent example was an email to a doctor. Nothing basically wrong with my content, but I had to think after his reply that I hoped I wasn’t frustrating him or questioning his wisdom. This really made me think about my feelings when I was writing, and I realized I was frustrated, worried and a little desperate, both with myself and what was going on in my body.

Not a good foundation, because my words came from that emotional base.

The Bible of course has a good deal to say about the tongue and our words:

Proverbs 11:9 “Evil words destroy one’s friends; wise discernment rescues the godly.”

Proverbs 11:12 “It is foolish to belittle a neighbor; a person with good sense remains silent.”

Proverbs 11:17 “Your own soul is nourished when you are kind, but you destroy yourself when you are cruel.”

Proverbs 15: 1 “A gentle answer turns away wrath, but hard words stir up anger.”

Proverbs 18:4 “A person’s words can be life-giving water; words of true wisdom are as refreshing as a bubbling brook.”

And of course most of James chapter 3 in regards to the tongue. The majority of a chapter of the Bible devoted to the destructive power of words!

Great! But, it goes deeper than that, and deeper is where I have been introspecting myself. A few quick questions to cut through the layers to get to the source:

Where do words come from? The brain.

Okay, what prompts the brain to create the words? Um, thought processes and emotions.

Hmmmm, what fuels those thought processes and emotions? Character.

Whoa, So basically who we are.

Who should be in charge of our character? God.

So this is a great (although be it uncomfortable) process to go through with the Lord when you find your words lacking, hurting, harsh, sarcastic, condescending, always being misunderstood, or falling short of kindness or clarity. In some cases just focusing on your recipient and not your agenda is all you need, but more often than not you need Jesus to take a magnifying glass to places in your heart you didn’t even know needed work. Trust me, there is no better heart surgeon than Jesus.

Being opened up is always uncomfortable, but having tumors removed is ALWAYS profitable.

❤️

Psalm 139:23-24

“Search me, O God, and know my heart! Try me and know my thoughts! And see if there be any grievous way in me, and lead me in the way everlasting!”

Psalm 51:10

“Create in me a clean heart, O God, and renew a right spirit within me”

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The Lyme Art Book Is Live!

Hello Lymies, infected, sufferers, downtrodden… and all other readers;

I am excited to finally share with you a passion project from 16 of your fellow Lyme sufferers: The Lyme Art Book, “Infected/Inspired”

This has been a while in the making, as you can imagine it wasn’t easy when the people putting it together suffer from lack of energy and their own personal lists of symptoms they deal with. A great deal of praise and thanks to the project organizer Stina B. who diligently through her own struggles made this happen.

Now we need you! Without backers this still will not come into fruition.

All art and word art in this book has been created by Lyme sufferers, and proceeds go toward helping those who can’t afford treatment.

We thank you in advance for your support and participation ❣️

💚➡️ Lyme Art Book

Leaning When You Can’t Stand

This quote struck me today; it is (yet another) brilliant quote from Mark Twain.

God is speaking to me through words from an atheist! He really can use everything and everyone for His purposes.

I struggle greatly with discipline when it comes to my illness; partly due to self control, and partly due to fatigue and malaise that make it hard to organize my supplement protocol and successfully prepare a meal regimen, not cheat on my diet, on top of working….

Yes I have fatigue and fog and physical pain to fall back on as an excuse, but how often do I instead think to fall back on the Holy Spirit?

I am currently just beginning an audio book called Discerning The Voice Of God by Pricilla Shirer (I don’t do so well with actual reading), and at the very beginning she talks about having discipline to spend time with God; Not just 10-30 minutes to carve out to read the Bible or our current study, “putting in our scheduled time”, but actually spending precious time with HIM; speaking, then listening, Opening your heart and mind to Him without bringing our pre-conceived ideas to the table of what we think we want to hear or our expectations.

Even on the hard days when I’m in a haze and not doing well with my pills or my diet, can I even just on a spiritual level deeper than words just lean on Him?

I can’t on my own strength, but I can ask Him for help and keep asking and step out into obedience again, and again, and again until that obedience becomes habit.

I pray that for all of us in our struggles. When all the frivolities that life has to offer are stripped away we become deeper people. This is a blessing that comes along with trials, so I hope we can use this “crutch” to the best of our abilities and then let God do the rest. If we fail (and we will) I also pray we don’t linger there (God doesn’t), I pray we treat every day as a restart, another step, and we keep pressing on.

For Those Who Judge Posting “Personal Problems”, And Why Some Put It All Out There….

Deep breath, here we go. This isn’t going to hit everyone the same way. We are as individual in how and what we communicate as our fingerprints, and that carries over into our perceptions of how and what others communicate as well.

Now I will start by saying this is not going to be a broad-spectrum discussion on various topics, because (obviously) there are things we should be private about (problems in a relationship with a partner, keeping a confidence, etc) but I will focus only on sharing/not sharing/over sharing as it relates to health and illness.

There is such a whirlwind of differing opinions when it comes to how open we (for purposes of this post I am referring to chronic illness sufferers) are with our struggles and symptoms and the emotional states we find ourselves in because of said struggles.

See prior posts: Judgment & Scrutiny Living With Chronic Illness

The Mighty: Why the Ill Post On Facebook

When You Are Put Down For Being Your Illness

The foundation for me as to why, is at its most basic stated in this quote and these verses:

“God never intended that we should suffer alone, that we should suffer for nothing. “~Joni Eareckson Tada

Joni’s Testimony Here about 50 yrs as a quadriplegic

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer;”

‭‭2 Corinthians‬ ‭1:3-6‬ ‭

We are given many examples in the Bible how we are to bare each other’s burdens, share in each other’s suffering, comfort and come alongside those who are sick, hurting, broken….

When did it become an “unchristian” thing to be honest about what you are going through? Or when did it start meaning you lacked faith if you were suffering? If that is true let’s start scrutinizing and judging King David, the Apostle Saul, and well just about every writer and prophet in the Bible! (To say nothing of the entire New Testament!).

What if Joni had never shared her story? Never written? Was never honest about her suffering, but instead had just put on a brave face? I can guarantee she would not have a ministry, not have touched millions, and worst of all not fulfilled God’s calling on her life and His plan and purpose in her trials.

Have you ever read a biography about someone overcoming great difficulty? Were you inspired how they suffered and what they went through and yet kept going?

What about how much you were inspired by a person’s biography where everything went great their whole lives; lots of money, great health, everything went right in their lives….won every race and accomplished every goal? Yeah. Me either.

No not everyone is called to share their dark moments of the soul, or all the ways their bodies betray them on a daily basis, and that’s ok. But don’t judge the ones who are. The ones who share with purpose…to try and get help. To try and help others. To spread awareness. To invoke change.

True you may be “too close” to the person who has suddenly become a verbal geyser of health talk to see clearly why they do what they do; because you know who they were before, and make your own judgments as to their motives.

And I don’t know the truth in every situation, because there certainly are attention seekers out there… What I do know is that the vocal ones are changing the world one person and one community at a time. I thank God for the ones who have, and still help me, who post and blog and share. I learn from them. I am encouraged by them. I love forward in my own journey because of them.

And I also thank God that I have also been able to help others.

None of which would have been possible had we stayed silent.

I am far from perfect, I have over the years been confronted with a lot of my own ugliness; both what has sprung forth from a sick brain, and what is just apart of my fallen self that has needed weeding. That said, I would like to think that with Christ’s help I am here for the right reasons, I refuse to waste my suffering, and I will not stop being open and raw and real as long as God has me in that place, no matter what stage I’m at. And if I’m healed I will not forget or close the door to those who come behind me, who need to read a blog about how they are not alone and that others have walked the path before them.

Trusting God In The Process

GONNA’ MAKE IT

“God sees not as man sees, for man looks at the outward appearance, but the LORD looks at the heart.”

1 Samuel 16:7

“Do not store up for yourselves treasures on earth, where rust destroys and where thieves break in and steal. But store up for yourselves treasures in heaven, where thieves do not break in or steal;”

Matthew 6:19-20 (abridged)

Make the goal.

Make the deadline.

Accomplish the task.

Make enough money.

Be a success.

Attain the stuff.

Endure/put up with/get through The trial or difficulty simply with the goal of having it be over so you can get back to doing all of the above.

In our humanity and our society we are very much goal oriented as far as how we consider success. But we are also very much that way when it comes to trials or difficulties; just get to the end and have it be over with! We see the entire “goal” of difficulty to have it be over.

This seems to be very much magnified in our modern Western society where we are driven by comfort, accomplishment, acknowledgement and success. These things are the alter at which we worship and pay tribute to with our very lives.

How opposite we are of God in our viewpoint due to our finiteness.

Because you see God is all about the process. Backwards thinking huh? Or as one of my best friends would say “upside down Kingdom”.

EVERYTHING IS BACKWARDS

…we will stand amazed to see the topside of the tapestry and how God beautifully embroidered each circumstance into a pattern for our good and His glory.

Joni Eareckson Tada (quadriplegic for 50 years)

Anyone who has seen the hugely popular Stranger Things understands the concept of the “upside down”. A world in perfect mirror of ours only it is dark, decaying and full of monsters.

Of course in this Sci-Fi series the “good” world is our own natural one.

But in reality (not tv) we exist in the fallen world where there is death, evil, disasters and pain. It is hard to imagine the perfect Eden God created and what this world was meant to be. But having an awareness that Christ’s death ripped the veil and brought about the Kingdom age of the earth (the indwelling of the Holy Spirit and direct access to heaven in prayer) can change our perspectives of being in defeat, to coming into awareness that victory has already been won.

The enemy’s number one goal at its heart is really about destroying our victory and awareness of who we are in Him.

Ahhh but spiritual warfare is a lengthy topic for another day….. (But hold onto that knowledge!).

Are you downtrodden and disappointed right now? In deep suffering and trial? Is it bringing you poverty, loneliness, oppression, discrimination? Are you low on wealth, love, employment, friends, family, health and comfort?

Those are all super important and the basics in life, and yet they are still things and count as treasures on earth.

No, it doesn’t seem fair and before you think I pass judgment, I am also poor and suffering in many of those same things and have been for years.

“Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.”

2 Corinthians 4:16-18

ACCEPTING WHAT IS UNACCEPTABLE

“For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.”

Philippians 1:6

Once we have an understanding and acceptance and even appreciation of God’s process (especially when it comes to our own situation) this doesn’t always mean that our attitudes or emotions at every given moment reflect this understanding.

Emotions fluctuate.

It took many years but I did finally come to not regretting years of illness and the loss of so much life to something that was out of my control.

I came to appreciate all that God had done in me and through me and continues to do. That said, in the years since that understanding I have not always been happy about it, or always appreciated or not reverted to regret.

I have to admit right now being in the season where negativity has been over- running any kind of positivity and I really don’t like myself very much right now.

I have experienced the ebbs and flows that go on in my body, my mind, my emotions and my spirit for so many years that I feel like I can never find level footing as far as where I am in my life, or my spirituality or my own personality. This can be incredibly frustrating especially when I am very much aware of it and how it is affecting myself and others.

As is usual during the more negative times I am quite aware that there is very much a physical component to my outlook comprised of how my internal organs are functioning, my hormones, my toxicity levels and many other factors. But that does not mean I am not responsible to take control to the best of my ability my relationship with God in these times and with others.

Whether I feel like it or not it is in these times that I should all the more dig my feet in as hard as I can into Jesus and into the Word to counterbalance the chaos and negativity inside my mind my body.

What happens when I act out of obedience and do just that? What you’re reading right now is a fruit of what happens. God opens up a channel and I’m able to do the best I can with his help to write for him.

SEEING INSTEAD OF LOOKING

We know that as long as we have breath in life that God is not finished with us. When he is “done” (for reasons that are wrapped in the mystery of his will), we go home. So while we have life whether we be in the midst of trials and difficulties or if we are blessed enough to have things easy; we should never stop seeking, growing, learning, exploring all the things that God has for us in our hearts and souls.

Because that’s why we are here right now, for those things in ourselves and in others.

We’ve Got stuff to do. And if we don’t know what that stuff is right now, at least we know Who to go to to ask.

Knowing God is the beginning of knowing His will and getting to understand what He is up to. Because when we are going through horrible trials we lose our comforts and the very things that (we think) bring us stability (such as money, a steady job, a loving relationship or our health). When we lose our foundations our world is rocked and we have nothing to stand on.

But I think that is the point. When we lose our false foundations we truly do know where we are spiritually, how much faith is real and how much we do or don’t trust God. That is why we are told to consider it all joy when we have trials, because we know we have God’s loving attention and He is looking to building the gold inside us by removing the costume jewelry we have surrounded ourselves with.

“You can never learn that Christ is all you need, until Christ is all you have.”

~Corie Ten Boom

If you have not read Corie Ten Boom’s story I highly recommend it. She survived a German concentration camp and witnessed the murder of her family as well as countless others.

“”Behold, I have refined you, but not as silver; I have tested you in the furnace of affliction.”

Isaiah 48:10

CONCLUSION

We will all go through trials and difficulties. It’s not a maybe it’s a sure thing. The difference is how we choose to face them and Who we choose to face them with and what we allow Him to do in the midst.

One thing that is assured in Christ is that (hear this!) it’s not for nothing and it’s not pointless!!! Quite the opposite. Rather instead we have blessings that would have been unattainable otherwise. I don’t know about you but if I’m going to suffer I sure want to be looking for the treasure and not miss out. It doesn’t mean it’s easy, but it means I will continue to ebb and flow in this journey of life and go through the cycles of negativity only to bob my head free again and recognize the truths God keeps reminding me of and giving me a better understanding of as I work at running the race.

The People Society Forgot

Have you noticed how insanely busy everyone is? And I do mean insanely!!! Life is non-stop running from this place to that, calendars are full, people have very little time to invest in each other anymore or cultivate relationships.

It is almost hard to remember days gone by (hey I’m getting old) before cell phones and social media when people actually talked to each other more. They had time for their friends, getting together to visit was simpler… it didn’t involve so much coordination and stress. Oh, and people cared for each other. Remember that? 

Now before I come off as bashing the character of everyone in our western society; I’m not sure who to blame, it just seems to be what happened to all of us, and most people are not unkind or unfeeling, it’s just that they’re so darn busy.

For the chronically ill that have fallen off the conveyer belt of this life that drives, drives, drives and never stops moving or let’s anyone take a breath…. we often feel forgotten. 

Now what’s great is that when you are not well enough to be uber social, cell phones and social media are a life saver, at least in some ways. You see we also have a window into the world that has forgotten us; people that goon hikes, hang with friends, go out to dinner, spend time with everyone but you because everyone else is up and mobile and, frankly more fun.

Ahhh the chronic illness suffer, we are like a low budget B movie that was made 20 years ago that most people forgot even existed, until someone says something like “hey wasn’t ‘_____’ like at that thing with that other person we went to way back when”?

Now you (normal person) may actually think of us from time to time, pray for us, have us run across your mind…. But guess what? We don’t know that!!!!!. 

Silence= I don’t matter and you don’t care. 

Again, I’m sure the person reading this is a good person, and a busy person, but maybe just as a favor to me, when “_____” comes to your mind and you haven’t seen them in a while and you know they are struggling, send a quick text, an IM, or maybe one of those old-fashioned phone call things. 

Please Imagine being too sick to do what you are out doing right now, and instead that you were home alone most of the time,  imagine (some) of your friends staying silent, for weeks, months…. 

Now Imagine now if they weren’t.

Thanks for listening readers 💚

Being Real

I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless….
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things…. living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor). 
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I’m back in that cycle where I have just enough strength to work my part time job….and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon. 

Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You’ve never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing “normal” things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound. 
The mind can go down Dark rabbit holes so easily: This isn’t living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That’s a major one Satan like to come at me with). 
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.

That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.

After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things. 
Why did I share all that? I don’t think it’s because I want pity. I want to be normal, I just want to live, I don’t want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don’t do so to the people in my life as well, and I’m just forgotten. 

I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a “hi”, nothing fancy, just knowing I’m not forgotten.
Why The Chronically Ill Post TMI

Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella: What is Bartonella & its Symptoms?

 Babesia: What is Babesia & its Symptoms?

which are the two major Lyme coinfections. 

My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that’s been difficult ( Lyme & POTS )
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process. 

A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can’t always identify every weed, and the “poison” ruins the soil so you have to keep replenishing as you’re killing, and just when you think you got it all…. you find there’s stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: What is a Herx?

Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary. 

Please also pray for God’s financial provision as for this season expenses have again skyrocketed into about 5,000 a month.

I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity). 

Steidl Family Lyme Fund
Jennifer’s Lyme Fund
Thank you again for taking the time to read all this.