Blog Is Not Dead

Blog is Not Dead.

Hello dear fellow chronic illness warriors, it has been a long time. Over the past several years as my health has improved I have found less and less to write about in regards to the emotional physical and social experience that is long-term chronic illness.

I have walked through the worst of this; (unless indeed it is God’s desire that I have setbacks coming). I have spent the better part of my 20s and 30s walking this journey.
I know the loneliness.
I know the isolation.
I know the social and emotional ramifications of long-term illness that I feel are far more damaging than the physical.
I would still say to anyone that there’s nothing worse that a human being can suffer than the loss of hope. We can go through so much in this life, but even when our bodies fail, our friends and family walk away, whatever trauma we suffer, if we have hope we can go through almost anything.

I have not been shy about my faith and the fact that the focus of my life and what holds me together is my faith in God. I have written in the past about redemption. I have written in the past about God‘s will in suffering and what we are to expect as far as healing.
The blessing and promise that whatever we walk-through is for our good and his glory is a rich promise that holds hope for us when hope is gone.

I have often in the past referred to going through chronic illness as being on an eternal treadmill; constantly expending energy but getting absolutely nowhere. It is exhausting and frustrating.
Being on that treadmill locked in a dark room with a window to the world, running towards beauty, running towards life, running just as hard and as fast as the rest of the world, but for you, you get nowhere.
This metaphor is absolutely true.
But, what has struck me lately (and that God has placed on my heart), is the aspect of training. Remember I said nothing is wasted in Christ? Everything is for our good and his glory? What if I was never stuck? What if none of the energy and the time on the treadmill was for nothing? You see I thought I wasn’t getting anywhere, but in fact I was training and building and strengthening.

I have been blessed over the last several years to see my health improve, to see a new lease on life which I know not everyone with Lyme and other invisible illnesses experience. As I have written about in past blogs I have definitely had to go through my mourning and grieving, letting go of things that were dreams that at this stage in life are simply no longer possible. I have gone through a decimation and a rebuilding from the ground up of my hope tower.
There is a reason so many Christian songs include the words “Beauty from ashes”. Just like new growth and new life spring from the ash after a forest fire, so it is that God brings renewal and cleansing, new life and new hope from the ashes of our devastation; In his kingdom it is not a maybe or a possibility, it is a promise.
I don’t know about you, but I don’t want to miss out on a single blessing that God has for me, a single word that He wants to impart to me, a single aspect of his character that He wants to teach me in the lowly places as well as the high ones. Do I want to miss everything that He has for me because I’m busy looking down at the ground or at my feet? Absolutely not. I have a license to be tenacious when it comes to the promises in Christ.

Right now I am sick. This one is temporary, but it has driven me into a place of isolation for a time. So many things are striking me right now: Primarily that I have a choice; wallow or worship? I can be defeated. I can focus on my selfishness and everything I lack, and wallow. Or (as is always an option in Christ), I can choose to worship. To chase my blessings with tenacity. To ask God those fundamental questions that are always the right questions to ask:
What lesson do You want me to learn right now?
What do You want to teach me about yourself in this time?
What are you preparing me for?
What attitude and perspective do I need to have to be in alignment with You?

I don’t want to be someone who settles! I don’t want to be someone who sees only in the flesh.
If freedom and victory are mine in Christ, I don’t want them to be a vague concept that I “hope will happen”, or that I believe in my head, but do not believe in my heart as knowledge that I can stand on as a firm foundation in how I live my life.
God is looking for people of a different spirit. Like Caleb and Joshua, who saw with different eyes because they saw how big their God was, and in comparison to Him, everything else was small.
May the very universe itself be small in my eyes. May I be one with steadfast unshakable faith, with a vision for victory, and eyes and a desire for Majesty.

Yes I have failed time and again. Yes I will fail again, probably uncountable times, because I’m human.
But not by my might, but by His Spirit, may I get up again and again and again. Because I have greater things to stand on than my own understanding. Because with man this is impossible, but with God all things are possible to those who believe.

May I face the darkness the same way I face the light, because my vision has nothing to do with my physical eyes.

Be strong fellow chronic illness warriors. Wherever your journey takes you, whatever place you find yourself in right now. The physical place you find yourself and your spiritual stance do not have to be the same. You could be lying in bed unable to move in your body, but you could be scaling mountains in the spiritual realm. Let us pour all things into the Spirit, for we know that faith the size of a mustard seed can move a mountain. What if the mountains you are supposed to move are not physical?

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.

The Names of Jesus (An Advent Journey)

hopethroughtruth

Day 3—Son of God

Luke 1:35 TLV
And responding, the angel said to her, “The Ruach ha-Kodesh will come upon you, and the power of Elyon will overshadow you. Therefore, the Holy One being born will be called Ben-Elohim .

We can focus in on two significant things the angel is speaking in this verse. First, Mary is being told that the Spirit of God will be performing a most miraculous sign by allowing the conception of a baby by supernatural means. Second, this child to be born to Mary will be the Son of God!

Just put yourself in Mary’s shoes for a moment. How would you respond to this? Would you laugh and say, “impossible, that can never happen”, or would you humble yourself and speak, just as Mary did in Luke 1:38 “I am the Lord’s servant. May everything you have said about me come…

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Casket Of Departed Hopes

Being haunted is when something dead will not stay buried, and instead comes back to remind you of loss and death.

It has been a long time, a very long time indeed since I have cried and felt the deep pain of lost hope. Not that I never feel passing regret, but rarely does it cut deep enough (anymore) to cause a night of crying myself to sleep. There was a trigger tonight; beautiful pictures of a friend and her husband enraptured in the joy of a new baby. For some reason even in my happiness for them, a dark window opened in my heart that felt like gazing in a looking glass at what could have been, and (for me) will never be.

Over the past few years I have successfully mastered driving a stake through the heart of hope and moving on with an alternative life path, one that I didn’t choose. I have come to peace with God and even to an understanding of the blessings, like flowers in the weeds of hardship. I had to lay those hopes to rest because the dreams that carried me through years of suffering, seemingly always on my horizon, only to vanish in the harsh light of truth, became only pain, and pain robbed me on a daily basis of both joy and seeing God’s truths.

It wasn’t that many years ago when a state of mourning and grief were my daily countenance, and sadness was a mantle I wore across my shoulders. Constantly looking back at loss, and down at disappointment robbed me daily of any life in my life. I have come a long way since those days, and although a huge component was outside my control (literal bacterial, viral and parasitical infections in my brain and body), there was also a huge spiritual component, and letting go of my expectations for my life and coming to an acceptance of what was my plan Z, but what was God’s plan A was a turning point.

In the many years that I’ve kept a blog, I’ve found that rather than focusing so much on the physical aspects of chronic illness I have found myself writing about the emotion and spiritual experiences. This has been both part of my therapy and advocacy, but also my testimony and how God has led me to have a voice where I would not have otherwise. Does purpose in pain make it easier? Usually, but not always. I do look back though from time to time on where I was at different points along the journey, and it can be helpful on dark nights like this when all I can do is put my pain to prayer.

I’ve come a long way from the little lost girl in a dark corner…

Little lost girl (towards the beginning of the blog): https://jeanvieve7.wordpress.com/2015/06/08/little-lost-girl/

Gratitude: https://jeanvieve7.wordpress.com/2019/01/02/why-im-grateful-for-the-struggle/

Reshaping Hope: https://jeanvieve7.wordpress.com/2016/10/06/some-honest-thoughts-on-a-sunday-afternoon-when-life-reshapes-hope/

Reimagining Hope: https://jeanvieve7.wordpress.com/2018/10/17/out-of-brokenness-reimagining-hope/

Trusting God in difficulty: https://jeanvieve7.wordpress.com/2017/11/30/trusting-god-in-the-process/

Healing and God’s Will: https://jeanvieve7.wordpress.com/2015/12/16/healing-and-gods-will/

And this one that has been republished many times on The Mighty: https://themighty.com/2017/01/facebook-posts-chronically-sick/?utm_source=ChronicIllness_Page&utm_medium=Facebook

So, I no longer pound my fists on the door with the letters that say “what could have been.” And as the years pass the pictures of what lay behind that door fade with increasing frequency into the mist of memory. But those pretty pictures of hope are soiled by the memories of years upon years of grief, regret and mourning and living in a state that robbed me of even more life than my illness did.

So once in a rare while, on nights like this those happy images of a life missed come into sharp clarity, and that sharpness cuts like a knife. And shattered dreams come haunting me at night like some poltergeist refusing to go to its final resting place and instead attaching itself to the living and barring me from moving on…

But this is a bump in the night, and tomorrow is a new day. His mercies are new every morning and His song is with me in the night. As I begin to try and sleep I open my Bible to the verse of the day:

“If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?””

LUKE 11:13

He has indeed been good. And I may not have received all the gifts I wanted, but I am assured that I have received the good gifts I needed.

“No matter what precautions we take, no matter how well we have put together a good life, no matter how hard we have worked to be healthy, wealthy, comfortable with friends and family, and successful with our career — something will inevitably ruin it.

Suffering is unbearable if you aren’t certain that God is for you and with you. Therefore, only when our greatest love is God, a love that we cannot lose even in death, can we face all things with peace.

Ultimately, you don’t really know Jesus is all you need until Jesus is all you have.”

(Tim Keller)

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 💚

Double Chocolate Paleo Scones

Double Chocolate Paleo Scones

I thought I would throw my own offering into the paleo baked goods recipe pool by giving a shot at creating my own. I got inspired to create a paleo version of a chocolate gluten-free scone made by a local coffee shop here in North Idaho that makes excellent GF chocolate scones. But alas they use a traditional GF flour which still includes grains like rice and tapioca. GF flours can also often use legumes.

For those of us following the AIP with autoimmune issues and grain sensitivities, these are still a no-no. 😕

Another challenge I have with many paleo recipes is many use almond flour, and almonds for me are a high allergen. That plus many AIP’s can’t/shouldn’t eat nuts…

Not that any recipe is perfect for all people, but hopefully this chocolatey cakey scone recipe will be useful and yummy to some of my fellow AIP/Autoimmune/Lymie/Mast Cell/Histamine/“_______” friends out there ♥️. Gotta say I think these are a success 😋

Preheat oven to 350.

1 cup coconut flour

1 cup cacao powder

1 tsp baking soda

1 tsp salt

1/4 tsp baking powder

1/2 tsp cardamom (optional)

1 tsp vanilla

1 cup organic vegetable shortening

1 cup organic honey

8 organic eggs (from hens not fed corn or soy)

1 cup organic chocolate chips (soy-free)

Mix dry ingredients well, add wet ingredients until well integrated, then stir in chocolate chips.

Place batter drop style on parchment lined cookie sheets and bake for 12-18 minutes depending on size. Use toothpick if unsure of doneness.

GF

Paleo

Vegetarian

Eat in moderation, not a low calorie, low fat or low sugar food 😉

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