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.

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)

Lymies Cannot Live By Antibiotics Alone

Do you ever get frustrated when people think that you should be cured of Lyme with just a few weeks of antibiotics? Here is a great Picture Post to share. Oh, and link to an interesting website as well

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http://www.lymediseaseneogen.com/lyme-disease-elimination-program/

A Day Of Fatigue

You all (Lymies) know how it feels….your body is heavy……it feels like there is lead in your veins……like the earth’s gravity field is pulling twice as strongly on you than the rest of the planet’s population. This might be your reality every day, or like me these days are blessedly getting fewer and fewer. Whether you are the former or the latter Lyme fatigue knocks you down and takes you out. Sometimes it can take hours to get out of bed, going to the bathroom is a great inconvenience, and your brain is telling your limbs to move but they don’t always obey.

What is hardest is when the people in your life can’t understand; why you “look okay”, or why you were fine yesterday but crash today. It breaks my heart when I hear a fellow sufferer say they have been called lazy, or have Munchhausen’s (want attention), or they “don’t want to get better”. I know people mean well most of the time, but this is devastating and cruel to someone who is suffering from Lyme because it is not their fault. My mother who is a cancer survivor equates the worst days of Lyme fatigue as being very similar to going through Chemo therapy, it can knock you down that hard. Don’t forget your body is FIGHTING a bacteria that has invaded every system in your body! I have personally had to forgive myself because I thought for a long time I was being lazy because I didn’t even have the will to do things, turns out it was the disease. Because as I am finally turning a corner almost one year into treatment I am NOT lazy, because I don’t even mind doing housework, when I feel well enough to do it.

If you know a Lyme sufferer be kind. They are going through more than you may be able to understand. Know that their systems are invaded by a hostel bacteria, and these little corkscrew shaped bugs have burrowed deeply into their muscles, their brains, their joints, their blood……You would be tired too.

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http://decimawho.wordpress.com/2013/06/05/the-hardest-thing/

Neurological Lyme: So You’ve Known Me Your Whole Life And Can’t Recall My Name? Also the Lyme-ALS & MS Connection

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Lyme Brain. If you are a Lyme sufferer whether it be chronic, acute or mild, you probably know what this is. It usually involves minor memory lapses, trouble reading and focusing, compromised word recollection, and dyslexia. These symptoms can also be very severe, thankfully I am in the category of the former, and getting much better.

Since the Lyme Spirochete and secondary infections like Bartonella can literally effect anything and everything in your entire body, it makes sense that it can wreak havoc on your brain. I think this aspect of the illness is harder for people to understand; You just end up feeling dumb when you can’t spell words you have known for years, or struggle with simple math problems, and since those around you can’t “see” the disease effecting your mind, it may be hard for the friends, family, and coworkers of Lyme sufferers to understand what is going on with you. Especially if you have yet to be diagnosed.

SO many now diagnosed Lyme sufferers have been told by doctors when complaining about their various symptoms “it is all in your head”, well thank you doctor, in your ignorance you are not completely wrong. How many of you have had doctors suggest anti-depressants or anti-anxiety meds before your diagnosis? It is sad.

Dr Martin Ross MD: “Cognitive dysfunction is a very common problem that often resolves once the Lyme germ and co-infections are under control. Cognitive impairments occur with memory and information processing.” “Cognitive symptoms of Lyme include: Confusion/difficulty thinking; Difficulty with concentration, reading, problem absorbing and new information; Word search /name block; Forgetfulness, poor short term memory, poor attention; Disorientation, getting lost, going to wrong places; Speech errors: wrong word, misspeaking; Mood swings, irritability, depression; Anxiety, panic attacks.”

So you are not crazy, you are not alone, and there is hope!

Here are some helpful links for general information and living with Lyme:

http://www.thehealingartspartnership.net/lyme-disease_symptoms.htm

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20120205_SNL_Art_1

http://paleodietlifestyle.com/dealing-with-autoimmune-diseases-and-digestive-problems/

http://lymebook.com/blog/the-recovery-process/herx-reactions/herx-reaction-fundamentals/

http://www.tiredoflyme.com/so-you-have-chronic-lyme-disease-a-guide-to-preparing-for-treatment.html#.UdosW23eaSq

 

There are also links in some cases of ALS & MS in cases of those patients testing positive for Lyme. Here are some links for the ALS/MS Lyme connection: http://www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one

http://underourskin.com/

http://lymediseaseguide.org/lyme-disease-and-ms

 

A Lyme Bloggers Lament

So poignant and true. This is the feeling of anyone (may I say especially the young?) suffering from a chronic illness.

My thoughts: (on the link at the bottom)

So painful, and so true. Even though just literally in the last couple months I have started to get my head above water, to have more energy, to not feel like I am in a complete fog all the time….My body and I are still at war. I still struggle with energy, still struggle with terrible swelling and water retention, still digestive problems, and PAIN. But there is a small light. Now the hard part is feeling like a person who has awakened from a coma and has lost years of their life that they cannot get back. As my peers are mostly married, and even having their second babies, here I am 34 and single, and if I may be so bold, never even been on a date.

There is a piece of my life that should be there that isn’t, years that should have been lived and were simply lost. Where do I go from here as I look at complete wellness still being somewhere in the future…and it won’t be this year, maybe not even next year. I live day to day, because today I can manage, today I can pull through. Today I can give 100% to my job and leave nothing for myself. That is today, because tomorrow has been elusive for as long as I can remember.

Thank you Lymelight for sharing this: http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/