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.

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The Judgement & Scrutiny Of Living With Chronic Illness 

(*disclaimer at the bottom of article)
Judgment. 

Scrutiny.

 Those words immediately evoke feelings of negativity. Living with chronic illness is negative and difficult in itself, but have you ever stopped to think that almost every person batting a chronic illness also gets “insult added to injury” (literally) by being judged and scrutinized in everything they do?….. What they post on social media, every choice they make, every event they attend or don’t attend, everything they eat and every purchase they make? Yes. This is a huge part of living with chronic illness. 
   Can you imagine suffering from a condition and all of a sudden even “normal” activities and decisions come under the watchful and judgmental eye of everyone you know?
What do I mean? 
Example: “Shelley” suffers from chronic Lyme. All her friends and family know this. They know treatments are expensive and Shelley spends a lot of time at the doctor. Shelley also says no to a lot of family functions and activities with friends. Shelley also shares her struggles on social media and everyone knows she is struggling financially as well due to all her medical expenses. Some of Shelley’s family are very negative; they knew Shelley when she was active and vibrant and can’t understand how this sickness seems to go on and on without end. They think her posts about illness are attention-getting and that Shelley is needy, especially being that she is single and they think therefore she is trying to get sympathy. They think she is pathetic. Some of them let her know and express their anger. Some of them no longer speak to her at all.
Shelley also feels like she can’t win when it comes to socializing….
(NO) When Shelley says no to an event or dinner (or has to leave early or rest in the middle):
People think Shelley is being a drama queen again, or lazy, or being anti-social, etc. 
“She always says no so why bother asking”
“She is so self-absorbed with her problems. If she just got out more and acted normal she would feel better”
“Sickness has become Shelley’s identity. If she just stopped owning it she wouldn’t be so sick” 
“Shelley is not as sick as she thinks she is. Lyme is an excuse”
“Shelley has some kind of social disorder and is using sickness as an excuse”
“There she goes again, lying on the couch in the middle of a party. Apparently she wasn’t getting enough attention…”
(YES) When Shelley says yes to an event, or dinner: People think
“how can she be sick in bed yesterday and out today looking normal today?”
“She is such a liar, she said she couldn’t go out his morning and there she is tonight out with friends”
“She must be getting better, finally this Lyme thing is going away”
“You look good! You look healthy, you must be better”
“How can she afford to go out when she was just posting her Gofundme yesterday?”
“All this posting on social media about being sick, and yet when I see her she looks fine”
“Should she be eating that?”

You see I am Shelley. If you are ill and reading this, you are Shelley. And I know dozens and dozens of Shelleys that have the same experiences. 
Most people don’t think twice about going out to eat, taking vacations, hanging with friends, going to movies, buying a pair of shoes…

But when you deal with chronic illness things are a little different. Have you ever considered how much judgment someone who is sick receives? And this is on top of all the physical, emotional, mental, spiritual and financial suffering. 
That’s why I write. Because most judgment comes from naivety and simply not understanding. 
I have to deeply think before I post anything regarding my illness; TMI? Who’s my audience? Sharing info with fellow Lymies versus relatives that are going to roll their eyes at another health post?

Am I going to get negative backlash?

Are people going to get the wrong idea?
I also think twice before I post anything about going out, being with friends, or anything that has to do with spending money….. 

You see guy can buy new shoes if you need them without a second thought. But if I do I have to assess who might judge me knowing that I struggle financially. See what I mean? And I also don’t want to hurt that friend that I said no to yesterday when I felt super fatigued when they see me out with someone today because I rested and feel a little better.

I also struggle with guilt and and moral questions whenever I do something fun or spend a little money. Am I “allowed” to have fun? Can I justify a purchase for myself? Even though I am. It by any means extravagant (I rarely go shopping, buy clothes, and almost never eat out) I feel funny when I do and feel I have to answer for myself to everyone I know. 
Conclusion. 

This isn’t a perfect essay, and I didnt touch on a lot (including judgment and negativity from the mainstream medical community that doesn’t understand certain chronic illnesses), but there are tons of bloggers out there and they are doing a great job being a voice for this community. All we can do is try our best, and have an extra dose of grace as we raise awareness to those who would judge us. 
*Please note that this essay is on the topic of judgment and scrutiny; There are a LOT of kind and understanding people who do take the time to learn, ask questions, talk and give support. Thank you all my friends and family that fall in this category. 💚

  

A “Good Day” To Be A Lymie

Today is a good day; it’s currently 12:10pm on a Saturday and it’s still my “morning”, being that I’m still convincing myself to get moving and I haven’t done much yet.

I am coming off of several weeks of an antiparasitic/antiviral treatment that was pretty hardcore, and it was phase 2 having completed phase 1 the month before last. I feel like it takes a while for my body to reset and rebuild after the onslaught.  I had a UVBI blood treatment on Monday and I’m still not sure what my reaction is being that I felt energized the day of and not so good the rest of the week. (I was told I could experience some die off).

I’m tired. Even though I’m done with that particular protocol I’m still on a TON of supplements, and as of a few days ago three new prescriptions. Still have to deal with Candida, hormones and other stuff. I’m tired.  But body pain today isn’t too bad, fluid retention (my pesky persistent minion) is at about a medium. All things considered today is a good day relative to how crappy I have been feeling. I might even try and go for a walk.

I am mentally troubled this “morning” as I contemplate where I’m at as far as treatment protocol and what the rest of the year holds as far as medical expenses and whatever the doctors will want to do next. 11,000 went on the credit card just the last 6 weeks for our family’s medical needs 😳

That said; I got confirmation from my main two doctors this week that the protocol to kill the viruses and parasites was very successful and I’m in good shape as far as that goes. Which leaves the remaining battle being the autoimmune disorder factor in this long-term disease, and that’s been a huge battle. 

Bottom line my body hates itself and I hate it. Not a happy cohabitation. So my Mast cells and histamine, cytokines and gut all need to decide to start getting along or my slow decline into self-destruction will someday be successful. 

That said I am hoping that the remaining months of this year will see big changes, that I will start to experience what “normal” feels like, and that next time I have a “good day” it won’t be in parenthesis because of relativity, but “good” will actually be good


Lyme Fund

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. 

I want to hear from you!!! A call to all Lymies

I was thinking this evening as I made a post about having extra pain and inflammation today because my mast cells are high (Lyme complication). It made me think that anyone who saw me earlier today would be confused by this post because I functioned well at work today, and of course I “looked fine”.

As any Lymie knows many of us do look fine and can even speak and act fine despite pain, fatigue, brain fog and the other myriad of symptoms that might be plaguing us. If I had a dime for every time I could have whined and complained and didn’t….. 

that said,  I would like to do a post featuring the faces of chronic Lyme (that’s where you come in); For anyone who is comfortable to share a headshot and a short bio (how long you’ve been sick, your symptoms and how you function and maybe some negativity you have experienced from others). I will leave that up to your discretion. 

Since WordPress won’t let you share photos in comments you can share your photos and stories with me on my Facebook Lyme page: My Color Is Lyme. You can post in comments where I will. E sharing this blog post, or message me.

I am looking forward to your responses to help raise awareness and understanding. 💚

Health Update

As many of you know I have had some progress in health and have been winning little battles along the way, but some things persist: autoimmune disease (mast cell overactivation disorder, etc.), and all the symptoms that go with it: chronic inflammation and pain, flare ups and food intolerances, P.O.T.S., chronic fatigue, edema, neurological issues…..
My sister Holly and I are still digging away at getting to the bottom of why some things aren’t getting better. Holly has been having some pretty scary symptoms including brain inflammation, intermittent loss of vision, horrible fatigue and other symptoms. 

We have some excellent health care practitioners who are amazing and doing all they can, and treatments and meds continue to be expensive.
Yesterday there was a breakthrough; I saw one of my doctors to follow up on a test I had run a couple weeks ago; it actually went out of the country to a university that is doing some groundbreaking testing. Not only are they finding things labs in the US are not, but they are developing specific treatments to kill what they find. Apparently what I learned is that most labs here will only test for what is on the requisition, and nothing else, even if they find something they can’t identify it isn’t reported. So because they don’t do this kind of intricate testing in the US there is a doctor here in the states working with a doctor overseas at this university (who actually used to live here in Washington!). In any case several things showed up which are serious, but it’s good news because it would’ve gone undetected otherwise. I have an elevated white cell count, which is nothing new because that has shown up before, but what they did find is that I have some deep chronic parasitic infections one which attacks the gut lining and is deeply imbedded and is not treatable with normal antiparasitic’s, one that is attacking my liver and one my kidneys. 

So if untreated I could potentially be headed towards liver and kidney disease, and kidney disease is irreversible. Since the liver and kidneys have not been functioning properly all these years it makes sense that I can’t detox properly, process things properly, etc. 

As some of you may know because I brought it up in the past, I have been struggling with my liver and kidney function for many many years.

This help explains a lot of why all the autoimmune overreaction, the fatigue, swelling and other symptoms are not getting completely better even though the Lyme seems to be under control. (although Bartonella, a lyme co-infection did show up as still active). Getting treatment for the Lyme and coinfections has made huge difference, but there was still more to deal with. 

All the mast cell overactivation disorder and other autoimmune issues cannot get better until this is dealt with. 

Good news is that it is treatable with some specific medications they have developed at this university that does the testing. Bad news is it is $2,300 for the first round of 21 day treatment, and when I am done with that they have to retest and usually they have to do a second round of treatment at the same cost. (The test is also $788). 

And that is just me! I think our entire family needs to be tested (Holly already has and will be getting treatment too). The costs are big, but God is bigger.

I am asking God to do some miraculous things and we shall see how He provides. 
We could of course also use prayer in all of this, for healing and provision.

As a quick aside I could also use prayer that I don’t at any time have a stroke of blood clot as one effect of all this autoimmune activity is that my blood is thicker than it should be and puts me at risk of clot and stroke. I am on some things to counteract this but I’m still at risk. 

If anyone is able and feels led to aid in financial assistance we would be humbly blessed:

Lyme Fund page
And as always I am more than willing to work for finances so I will share my art page as well: Farfalla de la Luna Art Page

So What DOES Happen When A Person With Autoimmune Intolerences Cheats?

So because this is highly subjective and everyone’s body is different, I can only share what I go through when I “cheat” on my diet. 

Last night myself, my sister and our “brother” Dave visited my grandpa who is a recent widower and also just had back surgery. We had a wonderful very long visit, and ended up ordering dinner in the way of pizza. Now my sister and I had to find an alternative dinner source because of our food restrictions, but…..pizza! Besides our other food last night we both ended up picking off and eating some toppings off of a slice (dairy, processed meats, tomatoe, sulphates….). (I do draw the line even in little cheats at grains or gluten, that would put me under for weeks.)

Now baby cheats happen all the time, simply because my food restrictions are caaaraaazy! (See below). So having low reaction items sneak into my diet in the way of a little seasoning, or a little taste, happens all the time. And I beat myself up over this! because I always wonder “if I was 100% good all the time would this autoimmune stuff get better”?

I should clarify that on the iGg there are low reaction items and high reaction items, the “medium” one I struggle with on a daily basis is chocolate. (Hallelujah I was able to get off coffee, which makes me horribly sick). 

Okay, Back to what happens after pizza stripping: I woke up in th middle of the night feeling hot and restless, I went back to sleep but woke up several more times feeling agitated and with a growing headache that ended up being a pounding that encompassed my head and went down my spine. This morning my usual twenty pounds of fluid retention and inflammation had kicked it up a notch and there is an extra layer of squishy water under my skin all over my body. My eyes and face are all puffed up and I don’t look like “me”. Along with the extra inflammation comes burning pain. Then there is the extra acne that made a grand appearance this morning. My brain is foggy like an English moor. Besides that I just feel heavy and toxic and downright gross 😑

This will more than likely last for a few days. What I can do about it is detox like a mad woman, take binders, drink lots of water, make sure I get as many doses of my anti-mast cell suspension in the next few days as I can.

And there you have it. But What would have happened if I had had a major cheat? I don’t even want to think about it. 
The iGg allergy list.