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.

Out of Brokenness, Reimagining Hope

I have been thinking a lot lately about hope, and I have come to believe that hope is essential to life. When you think about it most people hold onto hope on a daily basis, even if it’s not a conscious thought. You hope the weather will be good on the weekend, you hope the guy you met calls, you hope you get a raise at work, you hope traffic won’t be bad, you hope you get over this cold soon, you hope you lose ten pounds…. With hope we are constantly planting wishes in our immediate and distant future with the expectancy they will blossom.       

This is why with chronic illness the loss of hope is equal to that of the physical suffering; it’s an internal death. Pain can be pushed through if you have hope it will end. Isolation can be endured if you have hope of socializing again. We can endure much more than we can imagine if we have hope throughout; hope for healing, hope for a better future, hope for life as we wish it to someday become a reality…..      

When we construct our hopes and dreams they are built on a foundation of what we feel is possible. After all we do not tend to realistically hope for things that are not in the realm of possibility, I guess if we do we call them pipe dreams. But when long-term illness and passing years of suffering rob you of the possibilities that are still attainable for a “normal” person, how then do you dream? What does hope look like with the shifts in what is possible 

     Of course the first dream for anyone that has been sick for a long time is for health, and subsequently health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. And in my opinion there are few things as painful as when hope is squelched and snatched away from you.  

     Now chronic illness looks a little different for every individual. For myself I am immensely blessed that I have come a long way in my 6+ years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I have had to construct how to rebuild hopes that are now built on a different foundation, a foundation of what is possible for me now.  

    I had an emotional reshaping of my hopes with my last downturn in health, and a lot of the hopes I had been holding onto for many years got torn down; these constructs were apart of my reality, part of the paradigm that made up my world. These things (that in my mind) were apart of what life had in store for me. The realization of loss was a sickening sucker punch of reality that knocked me down flat. I had been living in that place of rubble for several months, and I had to basically go through a grieving process and lay to rest my virtual hope chest. Coming back out of the dark it took a lot of questioning whether rebuilding the hope tower was worth it. Should I accept a state of apathy as my reality… live in the small little box that life has given me and never expect anything more? Or is apathy just another unhealthy coping mechanism that will ultimately rob me of even more life? Questions questions…. introspection.       

Rebuilding hope. 
 

     At the time I mused: “Of course rebuilding my hope tower will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Would He approve of my giving up on hope because it hurts too much to hold on?” 

    I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned. I am looking at leaving my thirties behind the last day of this year and this doesn’t quite seem real. In my mind I’m still somewhere in my late twenties, waiting for the all the things the normal progression of life will bring. In some ways life for the chronically ill is like a treadmill, running in place and never getting anywhere but expending energy all the same and there is no end to exhaustion.       
So friends, as I have said goodbye to children and family, to independence, to financial stability, to being able to stop working (that takes all my energy robbing
 me of having a life outside it), to success, to travel, to normalcy, and all the perks that come with those things…. (At least in my own ability to achieve them).
    
But I’m still here. The scorched earth of where my hope tower burned down became the fertile soil to plant new hope for the future, both immediate and distant. I do have seeds I’m watering, and they are founded in deeper things and maybe are not all about
 me. They are seeds of faith. Seeds of love. Seeds of family and friends. Seeds of gratitude. Seeds of empathy for others. Seeds of a commission to my chronic illness community.   I’m still here. 


Painting is titled “Hope Through Sorrow”, a piece I recently finished 

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.

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. 

Living With Someone With Chronic Illness, Are You Prepared?

Living with a person with chronic illness; what to expect

So we’re friends, we get along great and have never had a conflict…all is good and we are both amiable people who should be able to room together. You are also empathetic and know I (or said chronically ill person) have major health struggles. Lets say for the sake of this post that we decide to become roommates and I (or said chronically ill person) is financially able to do so. What are you in for? You may think you know, but you usually see me at my best because that is when I see people at all, and what may seem fairly normal from the outside may not be what you imagined when we get into the day-to-day. So I will do my best to step outside my life and look from a subjective outsider’s point of view.
I was prompted to write this today because this morning I encountered a situation staying in someone else’s house where I did not meet their expectations of me; I don’t mean this in a negative way on their part at all, only that my life doesn’t flow at the pace of everyone else’s and I am hit with the sharp reality that I disappointment people. You see this morning I was not “up and at ’em” when I was expected to be. Not only is sleeping difficulty just part of my life but it’s even harder in a strange house. Add to that that sleep is like oxygen to the chronically ill and there is never enough. So if I get less than 9 hours everything feels worse: pain, inflammation, brain fog, grogginess, cognitive abilities…everything. And a lack of sleep feels like a slow sinking death. 

With that in mind I rolled out of bed at 9:30 this morning aching, feeling hungover (no not from alcohol) and DESPERATELY needing coffee just to be able to speak properly… And was instantly expected to engage. I guess that didn’t go so well because I am sure I came off as unfriendly to the houseguest who had just arrived. But that’s a fact I didn’t even consider until later, but that’s how it goes.

Anyhow, back to living with the I.I. (Invisible Illness) Sufferer. 

If you catch me at the wrong time I may seem odd or unfriendly, my schedule is not normal, I am not consistent. Thank God my personality is more consistent than it used to be but I wasn’t alway able to navigate how I came off to others or convey what I meant, or be clear in my head with my intentionality’s…( I have had some catastrophic misunderstandings in the past). 

So currently I live with chronically ill family so nothing ever has to be explained, no one disappointments anyone else with unmet expectations, things in the house gets done according to whoever has the energy and nothing is assigned or on a schedule. We undertstand and support each other. But for the healthy person things might be strenuous. Here is what to expect:  

They will disappointment you/not meet your expectations:

What would be normal are Shared chores, a house schedule, sharing a bathroom/kitchen/living space, being uncluttered… Basically contributing in equal parts in all the ways a healthy roommate would be expected to; but they may not be able to do so.
This is scary for us because it means you may become frustrated and angry when we don’t hold up “our end”. Having expectations of a shared living situation are fair and everyone should contribute equally financially and physically and show respect; this is the only way rooming together can work. But this is assuming everyone involved is healthy, and living with someone with a chronic illness is not normal and throws a monkey wrench into what could be a happy cohabitation. 

We will have a problem with you using chemicals in the house, we will tell you that you can’t use that air freshener or spray that perfume in shared space. We will overrun the refrigerator. We will not clean up right away. We will sleep until all hours of the middle of the day. We will (most likely) be financially strapped all the time due to our overwhelming health expenses. We may appear lazy. We know we’re burdensome 😦

They will not respond appropriately sometimes:

So I am SO grateful that I now deal with this very little since I have been treated for Bartonella on my brain and brain stem, but I used to have a real problem with social situations and communication; with how I came across, with how I understood a situation and having proper emotional responses.
Ugh! This is really hard and frustrating especially when you don’t get out enough as it is due to your energy and symptoms. Being misunderstood and misunderstanding others makes you want to crawl out of your hole even less. Also I have to say that the chronically ill whose brains are affected need a lot of grace; I still deal with many fellow sufferers online and when I get frustrated I have to remind myself that I used to be where they are and it seriously affected my emotions and responses  too. I was whinier, angrier, and had a lot of inappropriate emotional responses to things that shouldn’t have been responded to emotionally. People that didn’t know us “before”, or don’t understand that this is what’s going on can’t differentiate between this brain garbage and our personalities (honestly sometimes we can’t either). I remember so often wondering “what’s wrong with me”? Well what was wrong with me was literally a viral infection in my brain.

So if your ill roomie is being bratty, emotional, childish, grumpy or whatever, and you think this is not true of the person you thought you knew, you may have to step back and give it a little time and space and see if they are different on a better day. But this is tricky ground and everyone is different, so tread how you see fit. I just recommend honesty in gentleness and grace.

They may be messy:

Yes that mess or clutter will get cleaned up, but maybe not when you want it to or on your schedule. Please understand we are not slobs because we want to be, we actually feel better when things are clean and orderly, but it takes effort to maintain that. You know how they say that the outside (say, a person’s home) reflects the inside? This is true. We are a MESS on the inside mentally and physically and for a lot of us it’s all we can do to keep any kind of normalcy. You may think we don’t care about clutter or are lazy, that’s not true. For example on a day where I happen to have extra energy and feel clear in my head one of the first things I do is clean house. And it feels good and I actually enjoy it! In contrast there are a lot of days where I am fatigued and I have a staring contest with those few dishes on the counter and no matter how hard I try to telepathically put them in the dishwasher it just doesn’t work. I try and mentally imagine getting up and moving and putting things away, and even in my head I can’t put forth the effort. The best way I can describe it is its like you have lead in your veins and everything is so heavy and moving your body takes three times the effort of normal.
And speaking of clutter; we are going to come with a whole lot of “baggage”, because our lives are all about health stuff; trying to get healthier, trying not to feel worse, trying to just live. So there will be a LOT, and I mean a lot of pill bottles. Plus pill organizers, zip lock baggies, tinctures, droppers, pill cutters, powders, liquids in the fridge…
And besides that we can’t eat and drink just anything, there are a lot of things we are intolerant to that further activates autoimmunity, so food is all about trying to improve health, prevent flare ups and rebuild our bodies. That means food is a bigger part of our lives than it is for most people, and not necessarily in a fun way. Actually it can be exhausting because we can’t trust things other people make (for the most part) because we don’t know if they used a non-organic veggie (toxic pesticides) or whether it might have been cooked in an oil that we react to, or has a spice in it on our allergy list… (You get the idea). 

So the cupboard, fridge and freezer are going to be stocked with a ton of stuff; there is going to be a lot of fresh produce, dairy-free milk alternatives, organic condiments, jugs of water, whole chickens, lots of leftovers (because cooking in bulk means less cooking), big bags of stuff from Costco (because buying organic in bulk is cheaper), hemp seeds, quinoa, spices, herbs, gluten-free items of all sorts… And SO much more.

Oh and lots of cooking means (drumroll) items to cook with! Also be prepared for your kitchen to be taken over by pots and pans, utensils, food storage containers, and (probably): a juicer, a super powered blender, sprouting jar, sauerkraut maker, food processor, fancy vegetable cutter, veggie noodle maker, ice cream maker, and more. But please, use our utensils and our appliances because we will probably want you to eat healthy too 😉

Also if we share a bathroom aforementioned pills may be in there too, along with our bags of Epsom salt, essential oils, rubs and pain creams. 

They may have trouble keeping a schedule:

Most people’s live revolve around one god: Time. Schedules, daily duties, social calendars, work, travel… It all centers on the almighty clock and this determines life and how it’s lived. With the chronically ill time can be almost shoved aside and forgotten and the “god” that replaces it is energy and the severity of symptoms on a given day. That is what determines daily life, and for many of us it is completely unpredictable. The yo-yoing is very frustrating we know, but even more so for us. Yes I know I will feel worse if I didn’t get enough sleep or ate something I shouldn’t, but what frustrates the heck out of many of us is that sometimes there is just no rhyme or reason that we can decipher why some days we feel downright good and others we have to crawl to get to the bathroom. What happens then is that we drive ourselves mad trying to reconstruct every little thing that we can to have another good day, or we overanalyze with intricacy what could have caused that bad day. 
So we will bail on plans last minute, we will let you down, our days when we aren’t working (if we work) may begin at noon, and getting ready for something could take hours because we take a shower, then rest, we get dressed, and rest, we do our hair, then rest… Oh and if it’s really a bad day all that getting ready may wipe us out and we’ll bail on you anyway. 

Please understand we HATE this, we don’t want to miss out on life and it adds to our malaise and depression and we hate letting people down, but this is reality and has nothing to do with desire or intention but everything to do with physical limitation. 

They may be anti-social:

*please insert here a lot of what was written above about keeping a schedule, as this overlaps that part by quite a bit and for the same reasons. 
But I wanted to add here that sometimes we won’t even feel like talking or visiting with you, our beloved roomie. This again has everything to do with lack of energy and pain levels and nothing to do with you. You see for a normal person the speech center of your brain is not necessarily affected when you are overly tired, but for an I.I. (Invisible Illness) Sufferer just trying to talk and listen and process what you are hearing and respond correctly takes a lot of effort. 

Aaaand again we are going to say no to a lot of social events and/or bail last minute.

One thing though that I’ve heard across the board from every chronic illness sufferer is that we don’t want you to stop asking us to things and inviting us. Even if we say no, it lets us know we are still important and we still matter. 

They can’t eat that:

By now if you know your I.I. Sufferer friend well enough to move in with them you will also know they have a very limited diet. 
Now working that through may depend on them and how difficult it is for them personally (as far as what food you eat in front of them and what you keep in the house). As for me I have been living with dietary restrictions so long it doesn’t necessarily bother me when people eat food in front of me that I can’t have; my will power has a lot more to do with my own inner struggles and won’t necessarily be effected by what you eat in front of me.

I have found that (in a social situation like a restaurant) everyone else is a lot more self-conscious about me not eating than I am.

I will say fervently to those (and I have heard too many stories) who do not take a sick person’s dietary restrictions seriously by: belittling them, trying to talk them into breaking their diet, sneaking “bad” food into their food, teasing them, saying it’s all in their head or that they have an eating disorder.. This is disrespectful, cold hearted and controlling on your part and metaphorically it is you lifting up your skirt and flashing us with your ignorance causing indecent exposure of your personality disorder. Sorry that was harsh, and very few people are that cruel, but I have heard first-hand of ill people having this happen to them and even landing in the ER due to an autoimmune response because someone slipped something into their food because they thought the person “was faking”. This has happened to me before also, although thankfully even though I had a horrible reaction there was no ER visit. 

When you have an autoimmune disease it means your body is in high-alert attack mode all the time and there are a lot of food triggers. We want to thank you in advance for understanding and please, continue to enjoy what we can’t.  

Their priorities are different:

How we feel is the lens through which we see and do everything. What may seem urgent or important to you on a given day may be pretty low priority for us. This doesn’t demean or downplay your priorities in any way, it’s just that the old saying is true:
“When you have your health, you have everything. When you do not have your health, nothing else matters at all.”

There is nothing like feeling sick in your mind and body every day of your life to change your outlook and priorities. You may think we are obsessed with our health and how we feel, but honestly when something rules your life to that degree and its something you can’t escape (you can’t leave your body) you feel it and carry it and are affected by it no matter where you are or what you do.
My sister and I have left a concert before that we had been dying to go to for months because we just couldn’t make it through to the end due to our pain levels and fatigue. Was this great concert a major priority? Yes. But our health and discomfort robbed some of the joy and caused us to leave before the end because we just couldn’t enjoy it to the degree we would have if we felt okay.

So, sometimes beloved roomie we will have to bow out of things we would like to do, and focus on things we would actually rather not. C’est la vie.
Thank you perspective roomie for reading all this, I hope you are now armed with info and can have some insight into the work of living with the chronically ill. 

Is Hope A Burden? And Accepting Circumstances…

I have been in a different place as of late; all I can say is that there has been an internal shift and this last round of die-off did something to me on a deep level.

As you know (I think at least) I had kind of a double whammy that began with starting a cellular detox May 20th followed by treatment by my LLDC May 23rd where he found that the three B’s were in remission, but that I had Epstein Barr, Non-STD Clamydia, Erhlychia, Lyme Coinfection virus A and C, plus Protozoa.  The first several days after treatment I was fine, felt great in fact and even had some activities with friends. But then I got hit hard and went back down the rabbit hole as I call it. I had been experiencing horrible body pain (much worse than the norm), bad enough to keep me from sleeping at night and causing several bouts of tears, both from the pain and frustration. Also any energy I had got snuffed out, went into a foggy place again, swelling worse… You know, all the usual stuff. 

Somewhere in the midst of this the hopeful light in me went out; it’s just been too many years….too much struggle. Thankfully I felt a slight lift a few days ago and checking the calendar it coincided almost exactly with six weeks post/treatment (they always say die off runs about six weeks with this therapy). I am still not feeling great but I think (hope) this accute bad spell is behind me. But I am left on the other side of this most recent storm a little different than when I went in. It’s hard to explain; I have been through the mind-numbing years when things were unbearable and I was in a state of apathy, grieving and hopelessness, simply surviving one day at a time. I have been through the period following this of awakening and letting go of grief and the regrets of lost time and loss of life and having so much hope for the future… Letting myself dream again. But now I seem to be in a place of complacent acceptance where hope itself has become a burden and not a joy. 

I guess I need to clarify that I have not lost hope in the Lord or the fact that He has good things planned for me or is doing good things, not at all. By His grace I have grown so much and continue to grow. I am blessed by a family I love dearly and we all weather this ongoing storm of chronic illness together because we are all in the same boat, it’s drawn us closer. I am blessed by some of the best friends a person could possibly have. I am blessed by my dog who is a gift from God (Shiloh’s Story). I am immensely blessed by my current job and the people I work with. But I am coming to recognize that some things I hoped would happen in my life are not happening and may never happen, and living every day thinking about what may never be is exhausting. So I am mentally closing the door on finding love, having a family, being “normal”, traveling, all the stuff that people do….  If God chooses to open that door that’s up to Him and it will be welcome, but I need to accept this little room and this life the way it is and just live my best for God one footstep at a time, one encounter at a time. If an online platform for fellow I.I. Sufferers is my calling and my little window out into the world, I have to be okay with that.

No I can’t be financially independent. Yes I have limited energy and have to manage my spoons. Yes life is a yo-yo with periods of brief normalcy followed by times of scraping by. Folks I’m just tired, and desires for the big stuff has kind of been squelched. 

Is this a good thing or a bad thing? Honestly I’m not sure, and the answer may be a little of both. I have been reminded a few times lately of Joni Earicson Tada and her story and her amazing minsistry. She had to come to acceptance of the fact that she would never use her arms or legs again (something that is unimaginable to me) and she has lived in so much grace and love. She has touched millions and that never could have happened if she grew bitter or kept striving for healing that would never come. I can’t think of a better role model than Joni. Who am I then to think I deserve better than this life of struggle I am living? Even if I am single forever and I never have a typical/normal life or the things most people take for granted, Or will never be able to eat everything I want, or do activities I want, if I forever have to pick and choose between things in life according to my energy level, if I have to deal with a certain level of constant pain, fatigue and swelling…I am still blessed and I can do a lot if I just let God do whatever He wants to do with me day by day.

So today after having taken a nap that has (again) become a common occurrence, sitting here on my bed with a bit of deep tissue pain, the usual swelling, headache and fatigue… I recognize I was also able to take a little walk in the pleasant summer rain with my fur baby love of my life, come home to a safe comfortable place to my loving family, and be able to write this post. Life is hard, but it can still be good 🙂


Beautiful slightly stormy sky this evening 

I’m Literally Sick and Tired Of Running Out Of Spoons

Most *Lymies at this point will know about The Spoon Theory, so when I say I keep running out of spoons you will know what I mean.

I am frustrated because I have been going through a cycle the last couple months where I have fewer spoons to use (I’m short of a whole set right now). Again as many *Lymies also know  you go through good and bad cycles that can last for months, and what is FRUSTRATING is that you don’t know why!

#4!

You can drive yourself crazy trying to analyze every little thing you eat and do that brings you up or brings you down, and sometimes you just don’t know. 

all that said I had a pretty good weekend; I DID stuff. Stuff with people! And it felt really good. But today I am feeling overtaxed and that I need a day of rest after doing too much; you know, gotta recoup from being “normal”.

It stinks because I have been missing my Monday night Bible study for weeks, and I miss the people desperately and I need the spiritual connection. 

I could spend a few hundred words here trying to dissect why I have been in a slump, and people will inevitably ask “have you tried this or that?”; all I can say is that I probably have the best care practitioners I could possibly have and I have gotten over a lot of stuff with their help and expertise, I will keep trusting I will find answers for the rest. So You Know Someone With Lyme

*at this point I know I have gotten a lot of the Borrelia and coinfections under control, but there is also a lot of other stuff going on in my body (see past posts). So it is speculative what’s going on internally right now 😛 

Anyway, it all comes back to balance and having faith that someday (hopefully soon) I can do stuff, stuff with people and not have to pay for it. 

A Lyme Quote Might Be In Your Grocery Store

Have you found this on the shelf yet? Check out the Trilogy flavor of GT’s Kombucha!

  
Why is this so cool? It’s not just that something I wrote got on national shelves. It’s cool because this is something I wrote years ago while sitting in my doctor’s office, during one of many appointments over the years in this Lyme fight. It went on an erasable board in the exam room with other little quotes from her patients, and it’s still there years later.

Like many people who get diagnosed with Chronic Lyme it is a multi-step emotional process; denial, grief, acceptance, fight. 

This isn’t true for everyone, and maybe not in that order, but we all at some point (hopefully) reach the point where we face it and fight. 

So to my fellow Lyme Warriors and Invisible Illness sufferers; every time you see this on your Kombucha, its for you.

And for those that are able to either help and/or share, I can’t do this alone: Lyme Fund