When I Find Myself In Times Of Trouble….

My dear fellow Lymies and other I.I. Sufferers, it seems maybe it’s time for me to jump on the bandwagon like so many other individuals, companies and industries, and address the present health crisis that is effecting us all; whether it be socially, economically or physically.

For those in the autoimmune disease community protecting our immune systems from exposure to viruses is nothing new. Being that we have Borellia, Erhlichia, Babesia, Bartonella… and other coinfections raging in our bodies on a regular basis weakens us to other seasonal viruses and illnesses, along with other contractable diseases like hepatitis, Epstein-Bar, mycoplasma and a host of others.

As the world is facing a pandemic of COVD-19 it is easy to be fearful. Although most people will be okay, even if they contract the virus, we know that the elderly, the immuno-compromised and others with chronic conditions are at risk. So how are we to react? And how are we to negotiate our emotional response in these uncertain times?

Firstly, I want to share this helpful article for the Lyme community regarding COVD-19:

https://www.lymedisease.org/lyme-response-to-coronavirus/

Thankfully I believe our community is already well-versed and prepared in self-care; We know how to boost our immune systems, we know what supplements help our bodies and our conditions we (hopefully most) have access to LLMD’s or LLND’s who have given us care, educated us and who we can call on for questions or advice.

For those of us not fortunate enough to have a personal doctor, whatever the reasons, we have been our own advocates and researchers, which includes strong online communities who support, educate and advise us.

There is good news.

Suddenly the world is becoming aware of cleanliness, germs and how things are spread. They are being more mindful in regards to how their actions may impact others. I hope and pray that after this present crisis is over that this will permanently change how not only individuals perceive cleanliness and infection control, but many businesses and public places will be hyper-attentive to infection control protocols in times of seasonal illnesses and on a day to day basis.

Fear is not your friend.

Friends, I am here with you; I too find myself in a people group that could be more susceptible to COVD-19. But I am choosing not to fear. Very practically speaking fear and negative emotions lower immunity and bring your cellular health down (there are studies to back this), so fear and panic are not our friends. Also when you are fearful you do not think as clearly and it is harder to have wise judgment. Secondly fear does not help you. Being more afraid is not going to change your situation, help you be more prepared, or assist your body or situation in any way, quite the opposite. Please know I am not downplaying the seriousness, or being nonchalant, I am simply saying keeping a level head and logically and methodically making plans to keep yourself safe is what will be more beneficial. Healthy concern and preparedness are your friends.

Whatever your belief system, if you have been reading my blog you know my faith and strength are in Jesus Christ. He is Who has given me the ability to get through the hardest trials and suffering in my life. And only He has had the ability to redeem lost years and lost life, and turn mourning into dancing, weeping into joy…. Now as always He is where I place my trust, and Who is giving me peace whereas I might otherwise fear.

Much love to you my community, we are in this together.

Further Down The Road

Hello to my invisible and chronic illness community, it has been a long time since my last blog post. It seems that there are fewer needs for words when suffering eases up. There is something about deep physical and emotional suffering that brings forth an outpouring of the agony of a soul, to be spilled upon the page.

My greatest inspirations for writing in my blog have always come from a deep place of suffering, and from that place a longing to be heard and to help others, as well as seek a higher purpose and find a calling in my words. It seems that this fact in and of itself shines a great light on the purpose of pain, and the reason for “senseless” trials and tribulations in this life. I know I’ve touched on the subject before, but how often do we relate to the story of another who has walked in our shoes and suffered the same as we have, in a way we could never relate to the kind words and comfort of someone who has no idea what we are experiencing? We are touched by those who overcome and find peace and joy not when suffering ends, but in the midst of it and despite of it.

This week I finished a short five day devotional called Finding God Faithful. It focused on the story of Joseph; we know the story so well, I feel to the point of not actually experiencing it anymore. Much like the mindlessness of repeating a memorized verse or song, that has lost any spark of meaning due to it’s familiarity. And yet, I found a new message in the story of Joseph that I feel relates specifically to not only God’s relentless and unending faithfulness to us, but how we experience Him in trials and suffering.

Part of the verse that was emphasized in this short devotional (that was repeated in several places) was “God was with Joseph”.

So simple, and yet so profound. Because did God initially show up and rescue Joseph from the pit or being sold into slavery? Did God for many many years rescue Joseph from prison or change his circumstance? No he didn’t, at least not for a long time. So where was Joseph’s comfort? How was God with Joseph this whole time? And on the flipside, how was Joseph unwavering in his faith? It certainly was not in seeing God change his circumstances, or end his suffering. The answer is in abiding in him, and holding fast not onto how God would work, but onto the person and character of God himself and having unshakable faith in a faithful and unchanging God.

It is easy to think we have faith in God when in fact without always realizing it, often we fall into having faith in how we want Him to work, what we think He will do, how we believe He will make us feel, how He will change someone….

When our faith is placed in the “what, when, where and how”, this is where we are sometimes disappointed, and our faith is shaken.

When our faith however truly rests in the “Who”, we shall never be disappointed; for our focus is on the unchanging character and nature of God and His promises to us, that are not always about our comfort, but about our good and His glory.

“”Can a woman forget her nursing child And have no compassion on the son of her womb? Even these may forget, but I will not forget you. “Behold, I have inscribed you on the palms of My hands; Your walls are continually before Me.”

Isaiah 49:15-16

“and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

Romans 8:27-28

“My sheep hear My voice, and I know them, and they follow Me; and I give eternal life to them, and they will never perish; and no one will snatch them out of My hand. My Father, who has given them to Me, is greater than all; and no one is able to snatch them out of the Father’s hand.”

John 10:27-29

(Also see the entire chapter Psalm 139).

To those with chronic illness that betrays them on a daily basis in their physical bodies and even in their minds and emotions; I know the agony of hopelessness, I know the pain and despair of seeing no end to suffering. Some of us will get well. Some of us will receive partial healing. Some of us will see the path of suffering go on to the horizon with no end in sight. We do not always know the answers, sometimes God is gracious to show us the reasons in this life, like he did to Joseph. And for some of us the answers may not come. It is here that our faith rests that God is relentlessly intentional to us, and the promise we rest on is that everything works together for our good and his glory. Disappointment comes when that good and glory doesn’t look the way we think it will look or want it to look.

I am in a season where so much has changed for the better, yes there are still struggles with chronic symptoms including unexplainable fatigue that hits me from time to time, seasons of brain fog, the relentlessness of inflammation and autoimmune reactivity…. But I am grateful that the last couple years has brought me to a place of peace with where I am in my life and with the Lord.

I am in another season of a faith journey which is stretching me, but which I face with equal appreciation as I do struggle.

The reason being is that there is a very sweet spot that you find with the Lord and a reliance on him during times that your faith is being stretched, that you cannot experience in any other way. Right now I find myself in a beautiful place of abiding, in a place of praying without ceasing; which is less about actual prayer than it is a constant commune with the Lord and an acknowledgment of Him in every thought I think, everything I do, in every waking moment of the day where He is my director, my comforter, my shield, my guide, my peace.

In the past I have given over more years than I can count to darkness and being in a place of mourning over things lost, and suffering that robbed me of so much life. I told God recently that I have spent too much of my life in a dark hallway grieving over closed doors. It is with extreme gratitude that several years back I had a friend challenge me out of that place, that I was to give my grief as an offering to the Lord and let him exchange it for a different vision, and He was faithful to do so.

So today, I have less to say about the particulars of the symptoms and sufferings of chronic Lyme disease along with its coinfection’s and complications, and less about the emotional place of agony we find ourselves in chronic illness.

Today rather I try and speak from a different place in the journey, a place further up the road, which is more a spiritual place than a physical one. There’s still so much in life that has not yet happened for me, that I have not experienced, that I have not reclaimed from the lost years of the past… and yet, God is with me.

Lyme Labels

Hello, my name is Jennifer. I have chronic Lyme, and life is pretty good.

Just those few words will hit many the wrong way. For the naysayers I am identifying with my disease, fishing for sympathy, whatever….

For those suffering much worse right now there might be bitterness, frustration, desperation and anger.

I’ve been there.

I think the reason I’m writing this at all right now (and as I’ve come more and more out of the dark over the years to become more of a median Lymie), I find I write less and less. So am I leaving a void? Is there something to say from the place in the middle? From time to time there is, and I try to make my infrequent blog posts deep and meaningful. But right now I’m thinking of this 🤢 disease itself, not so much the emotional and spiritual sides that I often focus on.

There seems to be such a myriad of levels to this Lyme thing; and symptoms and severity of those symptoms seems to be as numerous as registered dog breeds in the AKC. I don’t think I’m exaggerating.

So as I read so many well-written blogs, articles, essays and information from people on their Lyme journeys I sometimes see a gap from those middlin’/getting by, but not dying Lymies, like me. I don’t feel at this point I suffer enough to write regularly. I feel I don’t have a right to complain when I know compared to so many I really have nothing to complain about.

Why am I writing here? I don’t know. Maybe I’m just reaching out into the void to say hi to those who live every day with an I.I. (Invisible illness). To those who “look fine”, and maybe even act fine most of the time. But that live with:

An amount of daily pain

Never feel rested

Feel like life is a treadmill you can never get off

Know that Brain fog and inflammation are the new black

Not being able to eat that

Not having a full set of spoons

Being supplement/medication/protocol broke

A degree of loneliness

I hope if you are here you’ve been able to carve out a decent life for yourself. That you have healthy emotional acceptance of where you are, but that you also haven’t stopped fighting. I raise a glass of something alcohol, sugar, and yeast free to my fighters in green!

Hi. My name is Jennifer. I’m a functional Lymie. Life is good, and so is God.

I’m still fighting 💚

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

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 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. 

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