No Wasted Days In The Kingdom

My dear friends a couple days ago I wrote a new blog post trying to explain what it was like on a day of struggle. I wrote it as an outlet on a bad day that (seemed) like a total waste and just another hole in my life; I had no idea how wrong I was…

Lately I have been exploring with the Lord what it really, truly, tangibly means to work out my faith and walk in faith when I (feel) that my life is in a stagnant state, not being able to do everything I want to do, not being able to be active in the way I want…

What I believe He has been teaching me is that this means that my posture before Him must be one of praise, worship and rejoicing no matter what I feel or what my eyes see. That working out my faith in these places is all about attitude, perspective and obedience.

Also I have found that He has been working on my worst days when I do choose to be obedient. It’s hard when you are alone in your room not feeling up to doing anything and you’re like “Lord, what does being obedient look like on a day of nothingness?”

On a few of these days He has called me to write and this has been more fruitful than me writing on days I feel better.

So back to His miracle of redemption on me writing about a day of waste and emptiness. 

I wrote the post I shared ( Confessions Of A Functioning Lymie) on what it’s like to live through one of those in between days where people don’t see you, where you don’t feel up to doing anything, and God used that post in ways I didn’t see coming. 

You see I’ve been blogging for about 3 1/2 years about my Lyme journey and it has been fruitful and God has definitely used it to reach and help others. I do get contacted personally from time to time by other Lyme sufferers both through my blog and Facebook page, sometimes asking for help and advice. This can be overwhelming at times and heart-wrenching at hearing the depth of suffering and being unable to help, especially when the people have no access to treatment or the ability to afford it.

Usually when I post something new I will get under a hundred hits on that given day, but of course visitors will continue to read it over the coming days, months and years… The biggest “explosion” I have ever gotten in my years of blogging on a single blog post was over 200 hits in one day and it was something! 

Weeeeell, much to my surprise my most recent post exploded like nothing I have ever had before; other Lyme bloggers and Lyme related pages re-blogged and re-posted and on its first day it got about 1,200 hits, 2,300 on its second day, and as of about 8pm Saturday the 18th it’s gotten just over 6,100 hits. This is beyond me and my ability to promote. 


Well boy oh boy is God teaching me about redemption. I am getting so many responses and personal messages that are touching me and breaking my heart, but showing me how God uses suffering. Here are a few:


Blog Comments

(Since these people’s comments are public when they post them I am hoping it is okay to include some here)

I am struggling terribly. I have been diagnosed and the drs office treated me until the ins stopped paying the huge mark ups on the seevices and no lyme in Texas theroy leaves me bewildered. No one will treat my Lyme and I have lost all hope. My finances are terrible and the drs lack basic knowledge and refuse any effort. The disease is winning and clearly my husband and my kids 5 teens and 1 yr old grand baby deserve better…”.   ~Sara
Thank you for writing this. You just described my life verbatim. Although I do not enjoy hearing of another’s suffering, it is nice to know that I am not alone, and that someone else knows and understands what I am going through. God bless and speed you in your recovery, may your good days outnumber the bad ones and continue to multiply!”   ~Cheryl

“Is there a way to subscribe to your blog? I am not seeing it. I just read your BIO and it sounds just like me so I’d love to see your new posts as they come. Thanks.”        ~Traci

Thank you for writing this……I feel like I could of wrote this myself as this is exactly how my life is on a daily basis down to the exact meds and trying to plan out when to take them. Glad I’m not crazy and the only one that experiences these specific things. I wish you all the best and hope the good days start to out weigh the bad.”       ~Brenda

Wow. I’m at a stage where I don’t talk about my symptoms anymore because even I’m bored of hearing it and I’m also embarrassed every time I see that “oh, here we go again!” look on someone’s face if I dare to mention that my legs hurt or I’m exhausted (the usual response is “but you haven’t done anything!”). This is the first time I have read the experiences of others and it is so good to know that I’m not a mad, paranoid, hypochondriac but a normal person living with a disease that the medical profession will not accept or treat. “.          ~Julie


me exactly as well. it’s been going on (and off and on and off and on) for 21 years. danced (clean) for a solid 4 hours about two weeks ago, and paid for it a few days later and currently still in recovery mode. my first appointment with a lyme-literate professional is tomorrow. THANK YOU FOR THIS. ~Gwupara

Thank you so much for writing and sharing this! It’s as is if I was ready my life! You are right, only Lymies will understand and that’s what I try to remind myself when I feel judged. They are not walking in my shoes so it’s not fair for me to judge others either. Praying for strength and health for us all!”   ~Karen

“Hooked up to my IV antibiotic as I read your post! Late stage Lyme that is attacking the Neuro stem of my brain. Ms/stroke like flares that occur about every 5 weeks lasting 7-10 days. Right sided paralysis, left sided severe migraine, cognitive impairment, visual distortion, aphasia and slurred speech, all over painful muscle spasms with continual involuntary twitching. The body becomes possessed and there is nothing to be done about it until the flare runs its course.             You then have 3 or so weeks to recover, get back on your feet and try to regain some strength, just in time to do it all over again!     A total nightmarish hell that began out of the blue 3 years ago slowly killing me a bit more with each day that passes.                                       I get up, dress up, makeup, and show up usually with a smile! Must not quit, must continue to perservire. What’s the alternative! Got two small kids, can’t work, going bankrupt due to Medical bills and tests not being covered. The list goes on and on with no explanations, rationalizations or solutions. Just prayers, prayers and more prayers, to understand, to cope, to live”.        ~Sheryl

Thanks you so much for this. It made me cry but also gave me a chance to post it to my friends to see if they can understand me. I am on a downward spiral and I can’t seem to stop it. I am in a wheelchair but I keep working 3 days a week. You could of written this for me. Thanks heaps and I hope that your struggle is less. xxxxx”.  ~M.I.

“I’m so sorry. You have just described my life exactly. I was in medical management and had to stop because of what you described. I walked in everyday after work and got in bed and stayed there. Now, my disability insurance is denying my claim…..”    ~Kathy

The other amazing thing is what was happening last Monday night the 13th; despite not feeling well and having worked all day, I went to a gathering of six ladies Monday night. One of the things we did as a group was each of us prayed and had an activity of writing down prophetic words for each other. It was amazing as they were read around the room because of the continuity of what was received from the Spirit for each woman and each had so much personal meaning.

For me, sitting there, not feeling well and not being as “present” as I would have liked I received words from three out of the five women about hearts; having a ministry to other people’s hearts/that people would come to me for healing not of their bodies but for their hearts/that people would come to me because I would understand/that God has entrusted me with a heart ministry…(!!!)

Wow, none of these ladies knew what was going on in the online world that day and that people were indeed flocking to my post and messaging me.

I was so touched by God and His redemption and that He was using me on a day I felt empty and unusable. It really teaches me on a deep level truths I already knew; everything God says about suffering. 
Suffering has been talked about so much at my home church and we have all suffered, none of us has been untouched by it. I know I have shared that God as our Redeemer and His redemptive power has become so personal to me and that not only can we believe that He can use our suffering for our good, His glory, a testimony, a ministry, to comfort others with the comfort we have received, our refinement, growth in faith…. But that we can with TENACITY chase down these things in the very midst of suffering as our blood-bought right in Christ! We needn’t sit back and think that during the trial is just a misery to get to the blessing at the end, and have promises at the end of suffering, no, ours in Christ is having those promises in the midst of suffering; a promise and purpose in every pain. Nothing ever wasted, ever. 

I was also very blessed yesterday to get in on an appointment five days sooner than what was scheduled with my doctor in Anacortes. The pain, swelling and fatigue had really upped their anti the last several weeks (I still believe it’s die off from my treatment of half a dozen little buggers). I had really taken a dive and have been sleeping like 12 hours a day with naps in between on days I’m not working. He said that my autoimmune reactivity was indeed very bad and he could tell my body was in crisis mode.

Thankfully he did necessary adjustments and hopefully the fire will calm down. Pain and swelling still bad bad bad today, but I feel clearer and have a better sense of well being.

Onward and upward. 💚 #deathtocoinfections 👊🏻
To sum it up though I have been given yet another shot of hope, not so much in my body as in my spirit, and I know that there are facets to this journey I have not even begun to understand as far as what God is doing. But I know He is working mightily. 

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When Faith Has Four Paws

I wrote this about a week or so ago when I was having a bad day
Shiloh is not just a dog, she is a living breathing ever-present reminder of what God can do, a four-legged faith builder, an answered prayer by my side.

God unfolded messages to me through her that have helped me see Him better, and in times when I feel down (like tonight) I only have to look down and see the physical representation of God doing abundantly beyond what I could ask or think (Eph 3:20).
November 2014 my dog Riley died unexpectedly. He had been my companion for 5 years and was a spunky, vibrant, tenacious, mischievous, loving, fun little pain in the butt 🙂

He went from a crazy, energetic, spunky little guy to practically blind, stumbling and dying within the space of a month.

One night at the ER I had to make the hardest decision a pet owner has to make and say goodbye.

As you all know my long ongoing health battles have left my life very small, so losing my little companion was heartbreaking.

But God is merciful and this long-suffering has taught me so much and God has shown so much of His nature to me in ways I could not have seen if life were easy. So whether I “felt” like it or not I remember praying through my tears and confessing that I knew God well enough that He had a purpose in this happening, and I wanted to be obedient as far as my part and I needed to be open to if it be God’s will, for me not to have a dog…. Maybe He had something for me to do, or somewhere for me to go that wouldn’t be possible with a dog?

I didn’t know. But I wanted to see His will through my pain and grasp onto His blessing in tragedy, His promise in this loss. 
That first night sleeping alone without a canine companion was so lonely and empty, but through weeping I remained in prayer that night and for several nights to come, not looking online at rescue sites, instead trying to search God’s will.
I can’t explain it, but after a couple days I felt a “release” and I knew it was okay with God to start to look for another dog.

So I hit the Petfinder page and started looking. I left myself completely open to any breed, any gender, because I knew with my few previous dogs I had looked into their eyes and I just “knew”. I had no idea what God has for me so I just looked at everything. I guess you could say I am very intuitive and a very good judge of canine character, because I tend to “get” dogs by looking at them.
Well I looked, and I looked, hours everyday…far and wide. Nothing felt right. 

I figure over the week I searched I looked at about four thousand dogs (I’m not joking). Closest thing that looked tempting was a little male red sable Pom in Oklahoma. Too far away obviously. But I was still being drawn to Poms even though my little orange Pom boy Riley had issues. 

The next morning after seeing this Pom online I was driving to work in the early dark hours of winter, and I started praying, I knew what I wanted and needed in a dog.

It had to be housebroken

It had to be quiet and not yappy

It had to be good with other dogs and people

It had to be smart and not have “toy dog syndrome”

It had to be not too small or delicate

It had to be free of behavioral problems

It had to be gentle and intuitive with my parent’s dog that has a fatal heart condition

It has to be not too old or too young

It had to be very smart

It can’t be too far away because I can’t travel far to pick up a dog

It had to have the right balance of energy; able to be equally active and quiet

And finally dear Lord, it is not a need, but could it be a sable color?
That night when I got home from work I did what I had done every night for the last week, I jumped online to look at dogs. And there she was. I saw her eyes and I just knew. 

She was stunning! A wolf sable which is a very rare color. She was housebroken and according to the rescue group, good with other dogs and well mannered. She was also in Yakima which was not out of the question in distance.

I filled out an application that night, then I waited and prayed. I found out later that Apparently she had been listed only one hour before I applied for her.

I had a phone interview with the agency a couple days later and did some more waiting and praying as they investigated my references.

I remember worrying so much as her online profile said “adoption pending” and I prayed it was me.

Well I did get the call that I was approved, and that weekend we took the drive over the pass to go meet her. 

15 minutes meeting a new dog in a neutral environment isn’t much to go on to decide to adopt, but I took the risk and took her home.

I remember (it was the cutest thing) we made a bathroom stop on the way home and little Ripley (prior to her name change) was worried that we were leaving her and looked over the steering wheel to make sure we would come back.
Of course we took a little time to adjust to each other, but Shiloh (my gift of peace) turned out to be the embodiment of my answered prayers and MUCH more.
You know my list before God? There was not one item on my list that He did not grant me, and beyond.  

You see I never thought to ask for a caretaker, I never thought to ask for a dog that could be a registered therapy dog, be in tune to me and my needs on an intimate level. I asked God for a sable but never did I expect of the three sable color varieties out there that He would give me the rarest and most beautiful (a wolf sable). 

I never thought that of all the dogs I have owned over my lifetime that He would bring me my canine soul mate (yes there is such a thing) that I would love so much and would love me with all her heart.
So you see, God answered needs and desires I didn’t even know I had. And more than that He has used her to build my faith and strengthen me in the midst of difficulty.

And I asked Him and keep asking Him what He would have me learn in the miracle of Shiloh, and He has shown me:
He cares for me not just for my needs, but wants to meet the desires of my heart.

He is capable of doing beyond what I can imagine.

He can bring something or someone perfect into your life at the perfect time.

He can replace something good with something better and turn a painful thing into joy.

He hears my prayers and is glad to answer them if my heart is contrite and obedient to His will.
So tonight my friends, as I am at a very good place with the Lord but having a moment when I am feeling down because of loneliness and wondering if my dreams will ever come true…. I just look down at the little furry friend on my lap, and my faith is renewed. 


How Do You Apologize For Your Brain?

My Color Is Lyme

lyme_brain(information from underourskin.com)

Before proper long-term Lyme treatment on the left, and after proper treatment on the right. The left image reveals an oxygen starved brain. Interestingly enough when I was diagnosed with Bartonella in my brain and brain stem in July I was told I was not getting enough oxygen to my brain.

I am going to try my best and blog tonight through the fatigue of the aftermath of a 16 hour (so far) day. The last couple months have been really rough with worse fatigue, brain fog, body pain, water retention and other stuff…

I am pretty certain I have entered the ring of fire of die-off yet again since my last two treks to Idaho October 13th and December 1st, but things have greatly intensified since the 1st. My body pain and fatigue have been intense. On my last visit the doctor identified a co-infection in…

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Confessions Of A “Functioning Lymie”

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.) 

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so). 

But what people don’t see are the days inbetween, the days that I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. 

I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability, and thankfully I have been blessed over the years to stagger along in this manner; being a functioning Lymie.

 I also have a gathering to go to after work tomorow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But for me I don’t usually do anything on a work day afterward because I just spent the day giving 100% to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue and rather than enjoying myself I will be a half-human whose mind is only about 30% present and therefore will get about 30% enjoyment being with my dear friend. These are the challenges faced by the upright and mobile Lymie. Spoons anyone? (Spoon Theory)

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced) how can I convey what it’s like to be a functioning Lymie? (Please note I am also using the term “Lymie”right now in a generalist sense because I believe I am clear of the Borrelia itself at this point but I just got treated for still-present coinfections: Erhlychia, Clamydia (non-STD form), Epstein-Barr, Lyme Virus Coinfection A, Lyme Virus Coinfection C and Protozoa. But as we all know chronic Lyme is never just Borrelia). 
I know that the yoyoing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me it’s complicated, and frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. 

So what is life like when I’m not doing so well, and you don’t see me, and there are no photos taken? :

I wake up at 10am, I  don’t feel like moving. I feel groggy and heavy and “hungover”. I had a hard time falling alseep last night, like most nights. It’s a catch 22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting 9 hours of sleep I don’t feel rested at all….I may need to take a nap today. My brain feels like it is still in that state of shutting down, you know like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being that I am trying to wake up. I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether the creamy fluids are a problem. As usual the matcha green tea hemp latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway hoping that it will be my nectar of life. Sigh, I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness, and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there but on most days like this breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night that have to be taken two hours away from food and other pills….I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken 4 hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. 

I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audio book, reading my Bible app and playing Candy Crush and Words With Friends. I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker, more lightheaded and struggle a little with feeling breathless and have a harder heartbeat. (This phenomenon: Why Do I Feel Worse After A Shower?). 

I finally get out and get dressed, my equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to die off/herx (What is a Herx?)

I look down at my body which I usually try and avoid at all costs; it is swollen and the edema is especially bad, and my legs are jiggling like a water bed (you think this is an exaggeration, it is not). The water retention makes my legs much bigger than they would be (come to think of it I haven’t seen what my body would look like without fluid in the last 7 years or so), It has also been this long since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced, now picture the deep muscle ache of a hard workout after having not worked out for months… Got it? Okay. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. The only variance is that on good days it’s a low-grade 2, and on bad days it can be an Advil-inducing 8. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully for the most part it has been improving and today the fluid is bad , but the pain is maybe a 4, even though the lower half of my body  (that I always hide and cover up) looks like Rosemary from Shallow Hal. I am just blessed not to have cankles today. 

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is now of course also my normal and I wonder what I would look like “unpuffed”, I do get glimpses from time to time.

It’s now into the afternoon, I  haven’t eaten much, I feel fuzzy in my head and tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache. 

Many of you wonder why I don’t paint or do something artistic on my days off like this, it’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself, even if you wanted to. Believe me I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen.

So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls…one apathetic day at a time.                                                                   

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my twenties, and now most of my thirties. Only Lymies will understand this, but this disease EATS YOU! It eats your body, your mind, what makes you you. It also eats your time on this earth.. Like water eroding the shoreline.

Today I need to pray more. Today I need to focus on God’s truths; because on days like today that are empty nothing’s sucked into the void, I have nothing else. 

Looking “fine” a couple weeks ago