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 💚

Advertisements

Why I’m grateful for the struggle

I’m just now waking up on New Year’s morning and although today begins a new year filled with possibility, blessings, and good things ahead, first I have to deal with a morning filled with a spike in inflammation and pain.

I had an amazing surprise for my birthday yesterday and was flown back to Seattle to spend a few days with my good friends, people I love like family. It was a wonderful relaxed evening and one of my friends even labored to make me a grain-free cardamom cake (my favorite). This morning (although there were no “major” cheats last night), my body is reminding me of it’s intolerance of normalcy, and well, eating in general :/

I’m not enjoying the feeling, mostly the fact that my face and limbs have enough fluid to sail a boat on…

But I digress.

Although I’m very uncomfortable physically and psychologically (I’m pretty self conscious of my layers of puff), I am also not dismayed and this present discomfort is small compared to past suffering, or what I know many others have to bear on a daily basis .

Lately I have been meditating on gratitude for the years of illness, for the struggles, the isolation, the lack of normalcy and the divergent path my life has gone down. I know It’s a strange thing to say I’m grateful, and I know I felt differently when I was in the midst of my worst years; the years of numbness and apathy, the years of neurological Lyme, the years of being in bed most of the time…..But I had to go through those times, get through the layers of treatments, of having hopes and dashed hopes, having health discoveries, having to make the climb if you will……

But more importantly it was the steps that God was taking me through in my spiritual journey; the stripping down and restructuring of everything I was, including my priorities and my paradigms. Fire cleanses.

Why am I writing this now?

Well I have to admit I don’t do as well in my spiritual walk when things are too easy. Not to say that my life lacks struggle (see the first sentences of this page), but that said I have been very blessed as of late with entering a good season of my life. I live in a new area I love, my living situation has improved and i have a wonderful new job working with great people. Now I certainly haven’t forgotten God, not even close, but I find I am not crying out to Him in need as of late, and I actually miss that.

There is a depth of relationship with the Lord when you are hurting, or scared, or have heavy burdens and don’t know where to turn other than to Him. There is a sweet place in misery where an intimacy with God can be cultivated. In these times you recognize Him as the All In All in comparison to the frailty of the world that is crumbling around you. That’s why I’m thankful. My roots have been anchored in dark and lowly places of desolation. Through many years and seasons past I think what God was doing in the toughest times (although for so long I couldn’t see it), was driving my growth down and deep and not up into the light. I think left to my frailty and the messiness of my own character, I would so easily fall into step with the world and be charmed and wooed by things that don’t last and offer only menial pleasures, and in the end starve the soul, if not for having lived in the valley for so long.

The writer of Ecclesiastes is spot on when he calls the treasures of the world vanities.

Where am I going with all this? I think what I’m feeling is that I’m entering a new season, a season where I get to put into practice all that I have learned (not that the learning or growing ever ends), and it’s time to practice discipline and obedience in my spiritual journey. Discipline is something I have always struggled with, at least when it comes to scheduling and organizing certain aspects of my life. The words for 2019 seem to be “gratitude” and “obedience”. It’s a theme God seems to be sprinkling me with here and there, little words from different people and different sources that together make a clear picture of what He is saying. When God tells you something He usually reinforces that message by giving it to you multiple times and in different ways to affirm the word.

I am happy to find that I am not fully contented in my present circumstances taking them at face value, it’s good that I want to keep moving forward as closely partnered with the Lord as I can be, to not put my time or relationship with Him on a sidebar, but to keep digging in deep even though I finally have some spring leaves in the light of the sun.

So, I will keep pressing on to try solve these autoimmune issues, the ones that still cause pain and challenges, I will enjoy and give thanks for the positive changes that are new in my life, and most importantly I will keep my focus on Jesus and my ears open to what He has to say in this season and the new commissions He has laid on the path before me.

Hello 2019, welcome.

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 

When the Media Actually Hurts The Chronic Illness Community

I encourage everyone to read the article below posted by an editor on The Mighty.

As you may know The Mighty is the leading site for various chronic illnesses and an advocate for that community.

Beware of Afflicted

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

Leaning When You Can’t Stand

This quote struck me today; it is (yet another) brilliant quote from Mark Twain.

God is speaking to me through words from an atheist! He really can use everything and everyone for His purposes.

I struggle greatly with discipline when it comes to my illness; partly due to self control, and partly due to fatigue and malaise that make it hard to organize my supplement protocol and successfully prepare a meal regimen, not cheat on my diet, on top of working….

Yes I have fatigue and fog and physical pain to fall back on as an excuse, but how often do I instead think to fall back on the Holy Spirit?

I am currently just beginning an audio book called Discerning The Voice Of God by Pricilla Shirer (I don’t do so well with actual reading), and at the very beginning she talks about having discipline to spend time with God; Not just 10-30 minutes to carve out to read the Bible or our current study, “putting in our scheduled time”, but actually spending precious time with HIM; speaking, then listening, Opening your heart and mind to Him without bringing our pre-conceived ideas to the table of what we think we want to hear or our expectations.

Even on the hard days when I’m in a haze and not doing well with my pills or my diet, can I even just on a spiritual level deeper than words just lean on Him?

I can’t on my own strength, but I can ask Him for help and keep asking and step out into obedience again, and again, and again until that obedience becomes habit.

I pray that for all of us in our struggles. When all the frivolities that life has to offer are stripped away we become deeper people. This is a blessing that comes along with trials, so I hope we can use this “crutch” to the best of our abilities and then let God do the rest. If we fail (and we will) I also pray we don’t linger there (God doesn’t), I pray we treat every day as a restart, another step, and we keep pressing on.

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.