The Roots of Autoimmune Crisis (My updated story of Lupus and Lyme)

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For those of you following my healing journey, here’s an update. For those of you here for the first time? Welcome to a conversation of HOPE.


A little over a year ago, I asked if it was possible to heal autoimmune disease naturally? I believed then (and believe now) that it IS and that our mainstream institutionalized medical system is largely hampering our efforts. Not only that, but the constant ingestion of damaging pharmaceutical medications are often making us sicker, not better.

An award-winning rheumatologist once patted me on the bum and told me that my suffering was just a lack of sleep. I cried all the way home and paid him $600 out of pocket for his trouble. He was wrong, but that knowledge doesn’t repair the price paid in mind, body, and bank account.

I acknowledge that modern medicine is a great gift and saves countless lives every year. That is not at issue. My problem is with the lives it often needlessly exploits and damages when better resources are readily available but suppressed by a broken system.


THE PROBLEM OF LUPUS

I have Lupus and mainstream medicine tells me that Lupus is an incurable autoimmune disease. The primary care specialist for most Lupus patients is a rheumatologist, and almost all rheumatologists treat Lupus symptoms with drugs that cause short and long term damage to the body in exchange for temporary relief and hope.

Those meds sometimes save a life when an organ is under concentrated attack by friendly fire. But like cancer meds, these life saving protocols do come with a price tag. I often wonder whether the cure is killing Lupus patients faster than their disease.

I’ve spent a lot of time listening to Lupus sufferers talk about their problems. There comes a point (rather quickly) at which the suffering of the disease becomes almost indistinguishable from the suffering caused by the  medication.

I didn’t want to go down that road and so I asked questions…

  • WHY is my immune system attacking my own organs?

  • How can I get it to stop without shutting down my immune system with meds?

What I learned from daily research is that the body is an awe-inspiring creation and that it does not fire on itself without a reason. I knew that if I could find that root cause, I could find some degree of healing. I will always have the dysfunctional antibodies with me but they don’t always have to be active and triggered. So…

What is triggering my antibodies to attack normal healthy cells?

That’s the million dollar question and I poured a boatload of money into integrative medical professionals and testing in order to find out. Money well spent, I believe.


FUNCTIONAL MEDICINE

I was a model patient walking in the door because I had already laid the foundation for good health over the last 6-7 years which they recommend for every sick person they treat…

  • I eat a diet free of garbage and inflammatory ingredients. (See how I eat HERE)

  • I don’t take OTC or pharma meds without a truly grave reason.

  • I live a healthy lifestyle free of alcohol, tobacco, and other toxic substances.

  • I have a healthy weight and strive to stay active and minimize stress.

  • I use gentle plant-based medicine and supplements to treat symptoms and support my body (More info HERE)

  • I use personal and household products which do not poison my body

I was managing symptoms and disease (multiple autoimmune diseases) through a healthy lifestyle when so many others were becoming dependent on and trapped in a cycle of medication and misery. Some necessarily. Some because they were NEVER OFFERED AN OPTION.

In spite of all of this and in spite of tremendous healing and progress…

My autoimmune flare ups kept coming back, my neurologic issues continued to surface, neuropathy increased, and new problems were added to the mix. When my thyroid numbers went off track for the first time, I got angry…

I am collecting autoimmune diseases. If I don’t get a handle on this, I’m going to die young or become disabled. I’ve got 8 kids… I’m not going to give up the fight.

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LEFT: Me, during a flare. Swelling, hair loss, malar rash, severe pain, numbness, extreme fatigue, nausea, migraines, respiratory problems, heart arrhythmias, sun intolerance, heightened allergic response, food intolerance, joint degeneration, etc.

RIGHT: Also me… walking the line between health and illness.
It’s a dimly lit photo so the light was favorable to my lines but… I usually look somewhere between these two photos. This illustrates the extremes to give a better understanding of the middle ground. My face often indicates (even in small ways) what the rest of my body feels like, although it’s generally invisible to others. Chronic illness always falls somewhere on a range of wellness. It’s generally not as simple as “I am sick today” or “I am not sick today.”


So we started shelling out the money to get tested for root causes of systemic inflammation and antibody production. Those triggers generally fall into one of the following categories:

  • Infections (bacterial, fungal, viral, SIBO)

  • Heavy metal toxicity

  • Leaky gut

  • Parasites

  • Toxic mold

  • Chronic stress (which leads to leaky gut and chronic inflammation and dysfunction)

  • Environmental toxins

  • Nutritional deficiencies

  • Pharma, OTC medications, and Vaccines (Don’t freak out, people. These are actually medically known triggers of Lupus. 10% of all cases, in fact, and I’m going to guess that’s a low number since it’s often impossible to identify a cause.)

(I’m going to mini-rant now about how insurance companies will cover brutally toxic meds that only mask symptoms but will NOT cover tests for most of the above. In my case, it was worth the money but it’s been a painful drain on my family’s resources. Financial concern has often kept me from pursuing care. We need a change in the system…. so that patient care is dictated by true patient needs and evidence-based choices, not pharmaceutical companies. Rant over.)


YOU HAVE LYME DISEASE

One of the happiest days of this journey was when I finally learned that the underlying cause of my lifelong autoimmune cascade is Lyme Disease. It was also one of the most crushing days. I am happy to have identified an enemy. But Lyme Disease, with all of it’s complicated co-infections and dastardly elements… well… it’s not the enemy I would have chosen to fight. The initial news brought relief. The days that followed brought confusion and grief.

Regardless, I now have a target and I’m ready to fight.

My case is what is called “complicated” Lyme. The translation is that the professionals don’t really how to help me. In addition to Lyme, I have CIRS, and hypothyroid (new within the last year). I have a body full of disorder and they don’t know what they are fighting, where it is, and which medical options will help without making my situation worse.

For example, certain antibiotics MIGHT kill certain bacteria but WILL cause other bad actors to flourish. Other medications WILL cause a die off of certain bacteria but will also cause the body to become overloaded with toxins and also harm the immune system. Some antibiotics WILL kill SOME microbes but it will cause others to strengthen their defenses....

I don’t have the time or the money for this. Who does?

Protocols talk about alternating and “pulsing” meds to try to help patients without damaging them. They talk about all kinds of things that cause me to alternately hope and cry.

I am faced with a decision: which path will I choose to attack this enemy which has been setting up camp in my body since I was a child? Every single doc has a different approach (because it’s a bit of guessing game) and I’m left with one more question…


IS THERE ANOTHER WAY?

I often run across research showing how certain natural substances destroy cystic Lyme, eat through biofilm, disrupt the inflammatory process, and do things generally better than antibiotics. I have experienced the direct and measurable impact of plant-based medicine and so it’s easy for me to believe from experience (and the science I’m reading) that these things are true. And I’m not going to complain (too much) about how the system is still handcuffed to what Big Pharma is doing and ignores everything else because…

I’m moving on.

My journey from this point is going to be research-based and pharma-be-darned. I will use them when it makes sense but otherwise, will be using an approach which honors the dignity and design of every single cell in my God-given body.

I’m not giving medical advice here. I’m just fighting for my own life and health. If you follow anything at all that I say, you have to do it based on your own belief that it is best for your body and not because I say so. Be your own advocate. Learn about your body and what it needs. Demand evidence-based care and full disclosure of medical procedures, medications, and all possible risks (informed consent).


THE HEART OF THE MATTER

Lyme infections have been around for longer than recorded history and the human body is designed to handle them. It is not the bacteria itself which has suddenly gone rogue, but cultural practices (nutrition, toxic environments, unnecessary medications) that are systematically undermining our naturally efficient immune response. 

Our bodies are not broken by design, to be overrun by every common tick bite. Something has gone wrong. 


WHERE I GO FROM HERE

My internet dialogue (website and social media) will primarily focus on what lifestyle choices I make in order to keep my body in fighting shape. I earnestly believe that for many of you, those changes will be enough to alter your life for the better in ways you never dreamed possible...

  • Nutrition.

  • Exercise.

  • Managing stress levels.

  • Sleep.

  • Eliminating toxins/poisons in your products, food, environment.

  • Informed self-care.

While I continue to navigate this road, I will continue to share natural wellness, nutrition, and essential oils with everyone I meet. I will also continue to write and share and work on larger products (TBA), and to immerse myself in my family life.

Life is short and I’m not going to lie; during a bad flare, I think about death a lot. What I bring here is a pouring forth of NO-REGRET health care.

“No-regret health care” means that I’m not going to compromise the gift of my bodily health in order to hoard time and grasp at pain-free living. Neither is possible. We are designed to pour out our lives in loving service with joy and holy boldness, keeping in mind always that we are not made for this world.

I have one shot with this body. I have one shot to teach my children about how we are to approach this gift. One chance to do my part to restore proper order to the way we live and care for the body as believers. Because it does matter and is the appropriate response to the gratitude we feel for life itself.

Welcome to my ongoing effort to honor the gift, utilize God’s plan for healing, and lay it down in service.

Thanks be to God!

Flannery, Lupus, and a Principle of Life

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When I was a young mother, I spent countless hours in the silence rocking and nursing my babies. There were no iphones and the dial-up internet on our Apple was so maddeningly slow that even if I could have balanced it on my knee, I wouldn't have. 

Instead, I spent those long hours singing lullabies and reading almost every book in my husband's extensive library. My real intellectual education happened during that time only after my formal schooling had ended... when my mind was permitted the time to linger over and fight with and grasp great ideas. I never would have or could have had such an experience without that sweet period of maternal isolation. I'm no great intellect but I expanded greatly.

In the subsequent 20 years, that mothering space has been invaded by the almighty glowing screen of technology. I mourn for young moms today who don't even know what they have lost. But I will save that lament for another day. 

There was one uniquely memorable week during that slow and stretching time when my husband introduced me to Flannery O'Connor and Graham Greene. Taken one at a time, they are heavy enough; but reading their collected works of fiction within the span of two weeks was something I have never had the desire to repeat nor would I recommend.

They were brilliant. They were horrible. I don't think a weeklong marathon of CNN could have burdened me more with the suffering of mankind. The evil on television is necessarily removed a pace or two by the medium, but O'Connor and Greene (O'Connor in a uniquely horrible way) set up shop in my very soul and camped out there for many, many nights after I first invited them in.

I cried and cried and cried long after the books were put back on the shelf. I had been a sad child and I carried sadness into my adult life. Those two authors ripped off my partially healed scabs (I was only 21 at the time) and poke, poke, poked me until that week was over and I was a sniveling mess. I was angry, particularly with O'Connor for taking me mentally and emotionally where I didn't want to go; for dragging me into a depth of reflection on depravity and evil that threatened to hide hope from me just as I was getting my footing in newfound joy. 

I'm sure she was brilliant. It's not that I can't grasp her accomplishment or understand the movement of grace in her stories. I was mesmerized. The problem is that I didn't need to enter so deeply into the depravity of evil in order to fully understand. Above all else, the world needs lovers and healers to minister to the broken body of Christ, not an immersion in sin. Although I could still recognize a pinhole of hope in her work, emotionally I couldn't reach it. 

By contrast, although dismal in his own right, Green left me with a residual hope that grew over time. I was drawn into, and properly horrified by, The Power and The Glory; and yet was also pulled toward a mysterious joy and gratitude for the faith.  

It was only recently that I learned of O'Connor's battle with lupus and it would have gone unnoticed by me except for my own recent diagnosis. During my internet searches for lupus healing, I frequently stumble across O'Connor's name and the persistent opinion that her lupus gave her unique insight into suffering and thus enabled her to tap her unique brilliance.  

One person writes (and I have lost the source to give credit and I'm sorry): "Unable to take for granted or to expect the normal life time of an able-bodied person, this brave and noble artist chose not to use SLE as an excuse for thwarted literary opportunity. Within the agony of lupus, persisted a literary genius more ecstatic, more defiant, more insistent, more enabling than any healthy time earlier in her life."

Perhaps... but not even on the worst days of my own struggle with lupus - days that I thought I would either be permanently disabled or die - was I ever drawn to write horror fiction. It isn't part of my personality to flesh out the inner workings of evil. Such an exercise would damage me in ways worse than lupus ever could. Lupus causes depression, there is no doubt... but I have a hard time believing that it was the underlying force behind O'Connor's darkness. It seems far more likely that her sickness simply magnified her existing tendencies.

Looking to another giant of feminine genius, we see that Elizabeth Lesieur did not suffer specifically from lupus but from very painful and debilitating chronic conditions for a large part of her life. Instead of writing horror, she wrote a spiritual journal which, after her death, converted her atheist husband (he became a priest), and was subsequently published in order to edify the faithful. I found her book the same year I first read O'Connor and found it so spiritually uplifting that I carried it with me for months to and from work. 

One of the stated principles of her life - to communicate through words and deeds "light and strength" to souls and thus to "reveal God to them" - comes into immediate conflict with horror fiction, especially when dealing with wounded souls (and aren't we all?). For someone who is carrying a burden of sorrow, I would never recommend O'Connor and always recommend Leseiur. 

SHOULD YOU READ FLANNERY?

O'Connor's work is fashionable right now in Catholic circles. “Have you read Flannery? You haven't? You must! You simply must read her. She is brilliant."

My perspective is different. Whether or not O'Connor had a gift is undisputed... but whether her fiction is for everyone is questionable. (Please note that I am referring specifically to her fiction and not to her entire body of work.) 

My experience with lupus (and suffering in general) is that it touches everything with a dusting of sorrow. I'm not sure it can be helped. But as I was carrying my own unknown burden of illness, O'Connor walked straight into my mind and handed me her burden as well. And not just hers, but the dregs of evil refashioned by her literary mind.

I was sick. I was in pain. I was struggling to find courage. And she almost sank me

While she trends on social media, I look on with some confusion at those who romanticize her suffering. She belongs to them in some way... they love her and claim her... and her cross of lupus is like a badge of honor some of them wear because their heroine was afflicted and strong. Perhaps it gives them courage and I honor that, but I definitely don’t feel that connection or consolation. 

WHAT IMPACT DID LUPUS HAVE ON FLANNERY?

The single most upsetting thing I read after my lupus diagnosis was an article discussing the influence of lupus on O'Connor's writing. I was googling for hope and healing but found something entirely different. The author seemed almost excited by the gruesome reality of the disease. He put his heroine and her suffering on a pedestal and talked about her agony of mind and body until I felt sick to my stomach. In all my internet searches before or since, I haven't found anything that depressed or terrified me more about lupus than that piece. I went to sleep anxious and weepy that night and angry at the authors, both O’Connor and her follower. 

Ironically, the author herself didn't want that. She suffered and she was an author. But in her own words: "My lupus has no business in literary considerations.” And still people won't leave it alone. 

Like the first time I met her 20 years ago, the oppressiveness of her work settled upon me at a time when I desperately needed "light." I needed hope and the peace of Jesus Christ. O'Connor's cross came through for me heavier than the weakly offered Easter, and my own burden of sorrow would not allow me to rise. It was like an instant depression. 

O'Connor... Brilliant but oppressive. Oppressed. Depressed. 

That she was able to pass on that oppression so fully to me with my first experience 20 years ago influenced my decision not to revisit or recommend her work. And yet here we are again, with the unlikely connection of lupus. I cannot do an internet search without running into her. 

If she were alive today, she would likely have lived longer with the modern medicinal cocktail of prednisone, chemo, immunosuppressants, and perhaps dialysis and anti-depressants. At the time, she received blood transfusions, ACTH injections, and suffered horribly from necrosis and the slow death of her body. Not as romantic as the peacock and the cane. 

I am impressed by stories of O'Connor's sickness because I have it... it's not romantic... it's horrible. It doesn't make me amazing or "strong." It has stolen from my family's happiness, resources, and time. It has robbed me at times of my ability to write, to sit in the sunshine, to walk a mile, and to sleep in peace. 

It isn't lupus which made O'Connor a great writer. It isn't lupus which made her courageous. 

My own lupus is a cross and a gift. As a cross, I often find that it suppresses my talents. As a gift, it reveals, not my own greatness, but God's... less because of what I can do and more because he gives me the courage to embrace what I can NOT do. 

The nobility, beauty, strength, and gift of lupus comes from grace alone and the mysterious way God works through suffering. The darkness itself is not the light and should never be confused for the light. It is the wolf and we cling to Christ for security.

I beg the good Lord to take away the burden of evil from my mind and soul... and just fill me with the hope and joy of Jesus Christ. Our world is full of despair and often seems blanketed in sin, depression, anxiety, fear, distrust, abuse, and despair. If O'Connor's horror fiction ever did have a place in the average Catholic's journey, I'm not convinced it remains a psychologically healthy element. 

Her supporters say that her violent writing was necessary to wake men up to the reality of pain and to bring spiritual clarity to complacent, numbed minds. I counter that we already understand pain deeply - with over 20% of our country's population on psychiatric drugs in order to function - and that it is the spiritual clarity of the true joy and peace of Jesus Christ which is what is sorely lacking. 

Modern science and experience tell us that increased exposure to violence does not make us more compassionate or spiritually sensitive... but that it oppresses and numbs. I would not go so far as to say that O'Connor's work should never be read, only that it should be undertaken with proper spiritual and mental health hedges in place if it is discerned to be a necessary reading. 

Finally, beloved, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. (Philippians 4:8)

The Morning After (A Story About Lupus)

Behind my sleepy eyelids, I can see the glow of the sun coming through my window. It is morning and I have a sinking, grieving feeling that in just a moment, I will bear the full consequence of yesterday's indulgence.

I try to blink the heaviness away from my eyes but can not; they are swollen almost shut. My face feels like a plaster mask is affixed to it and a strong cry of mourning builds up in my throat. I have been here before and the sorrow of recognition hits me like a wave. I manage to hold back the sounds of grief so I won't disturb the tiny blonde kiddo sleeping on my shoulder.

His cheeks are sun-kissed from swimming and playing the day before... a gentle rosy kiss which I know will be a stark contrast to what has happened to my own face. I haven't yet seen a mirror but I already know what I'll find there. I won't even be recognizable beneath the swelling. The sun is my enemy... and she had seduced me with her warmth and beauty... and with a touch of poison.

I have lupus and the sun is my enemy. Actually, my own body is my enemy.  When the sun shines on me, it triggers my body to attack itself... organs, skin, joints... and during a flare, there's really nothing I can do to stop it except stay in my cave and manage it. I have a rough idea of my limits, but yesterday... there was a celebration and a meal outdoors and kids to be monitored and life to be lived...

And so I let the beauty of the sun fool me again. Or rather... I knowingly went beyond what I knew my broken immune system could handle and am paying the price. 

The tears won't come until the swelling goes down and so I gently move my little prince off my arm so that he is not startled by my distorted appearance when he wakes. There are worse things than a funny looking face, but I do not want the small sorrow of even a momentary rejection this morning. 

I get out of bed and feel my ankles jiggle with the swelling. My joints are badly jarred by the slight impact on the wood floor. All 115 pounds of me... feeling like 40 years going on 100 and wishing like mad that I could at least have the sweet relief of a good cry.

But those tear ducts aren't working and so my soul cries instead as I touch my face. In confusion, I promise God (again) that I won't care two figs about what I look like as long as he lets me survive this long enough to mother my kiddos into adulthood. Just twenty years (or more), I ask. Please. 

In the emotion of the moment, I don't know if bargaining with God is okay. And I don't know if it works. I only remember the face of the crucified Christ Who loves me and I think it's okay to reach out even if I'm confused. Someone once told me that we shouldn't wait to talk to God perfectly or else we will never muster the courage to talk at all. And so this morning, He hears a lot of mixed up things from me. 

I marvel at how this swollen mask unmasks me and reminds me of how elementary I am in all things. I am nothing but a tiny girl asking her dad question after question and begging for a bit more ice cream.

"Daddy? Why did God make the moon?"
"But why did He make nasty mosquitos?"
"If God is all-powerful, why does He let people get hurt?"
"What if we pray harder? Can we stop the bad things?"

And therein lies the question that keeps people so far from the heart of Jesus Christ. We don't want the cross. And we can't see His love through our pain... we can't understand why He would let it hurt so much.

My inflamed forehead rests on the cool bathroom mirror and I think of life... how much I want to be alive and well. And I think of death... and how much I want to someday be fully alive through death. Somedays it terrifies me and some days it sounds like the relief that I pray for. That desire piggybacks on my emotion of the moment and swells into a deep longing for the Presence of Jesus Christ. 

I shuffle downstairs to grab my water, supplements, essential oils, and to figure out what kind of breakfast will help facilitate a healing day. I poke at my iPad until I find Laura Story's 'Blessings' and I press play. I listen and breathe...

"What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy"

I thank the Lord over and over again for the gift of illness... and then I put on some praise music and gently dance in a way that doesn't hurt. I can't go out in the sun today because my body doesn't work right and the sun is still  somehow my enemy. But someday, I will bask in sunlight forever...

I will not hurt. 
I will not be afraid. 
I will give thanks and dance forever.

I open my email and see an invitation to come play at the park. The sun is shining and I tell the hostess that I cannot make it today. Maybe next week.

And it'll be okay. It's all going to be okay.