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.

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 💚

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 

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.

Chasing down friends, a real world problem for a chronic lymie

I write a lot about the emotional and social aspects of having a chronic disease and the frustrations that come with it.

I know a BIGGIE with the chronically ill is the feeling of isolation and not being able to participate in normal activities, or at least not as many. Now before I continue there is a great spanse in the Lyme world from bed-ridden and unable to go out at all, to “functioning Lymie” who can maybe hold a job and get by but has limited energy for anything else.

I fall into the second category (I have lived through the first), where I can be social but it has to be carefully planned and very dependent on how I’m feeling and whether I’m working (same day as work usually doesn’t happen).

Oh and did I mention mornings? Lymies know about the morning toxic hangover and how hard it is to get moving in the AM. Which is why church is hard, Saturday morning breakfast get togethers or morning bible studies are out.

That said, I find I’m in a season of life where I (mostly) have to chase and pursue friends to get together. You see if I don’t attend the functions where everyone congregates and makes those “dates” together outside of said function, I’m kind of left having to be the electric communication stalker.

Now I’m not saying people don’t care, or that I don’t have some amazing friends that keep in good touch and are very caring, but there are also some who never make contact on their own, or maybe they say “yes we should get together” and then leave it hanging and never let me know what works for them. 

In the age of instant communication when everyone is always on their phones, how did it get to be so hard to communicate and get people to respond? Is it the whole country or is it worse in overpopulated/hyper-busy/rush rush rush areas like Western WA where I live? I mean come on; traffic alone here could keep people wanting to hide in their homes with the blinds closed and huddled in a corner. Driving 10 miles to meet a friend here could mean 40 minutes in traffic and taking your life in your own hands. 

Anway, life just seems to get more challenging with every pasing year, healthy or unhealthy. 

Those are my musings for today. 

The Judgement & Scrutiny Of Living With Chronic Illness 

(*disclaimer at the bottom of article)
Judgment. 

Scrutiny.

 Those words immediately evoke feelings of negativity. Living with chronic illness is negative and difficult in itself, but have you ever stopped to think that almost every person batting a chronic illness also gets “insult added to injury” (literally) by being judged and scrutinized in everything they do?….. What they post on social media, every choice they make, every event they attend or don’t attend, everything they eat and every purchase they make? Yes. This is a huge part of living with chronic illness. 
   Can you imagine suffering from a condition and all of a sudden even “normal” activities and decisions come under the watchful and judgmental eye of everyone you know?
What do I mean? 
Example: “Shelley” suffers from chronic Lyme. All her friends and family know this. They know treatments are expensive and Shelley spends a lot of time at the doctor. Shelley also says no to a lot of family functions and activities with friends. Shelley also shares her struggles on social media and everyone knows she is struggling financially as well due to all her medical expenses. Some of Shelley’s family are very negative; they knew Shelley when she was active and vibrant and can’t understand how this sickness seems to go on and on without end. They think her posts about illness are attention-getting and that Shelley is needy, especially being that she is single and they think therefore she is trying to get sympathy. They think she is pathetic. Some of them let her know and express their anger. Some of them no longer speak to her at all.
Shelley also feels like she can’t win when it comes to socializing….
(NO) When Shelley says no to an event or dinner (or has to leave early or rest in the middle):
People think Shelley is being a drama queen again, or lazy, or being anti-social, etc. 
“She always says no so why bother asking”
“She is so self-absorbed with her problems. If she just got out more and acted normal she would feel better”
“Sickness has become Shelley’s identity. If she just stopped owning it she wouldn’t be so sick” 
“Shelley is not as sick as she thinks she is. Lyme is an excuse”
“Shelley has some kind of social disorder and is using sickness as an excuse”
“There she goes again, lying on the couch in the middle of a party. Apparently she wasn’t getting enough attention…”
(YES) When Shelley says yes to an event, or dinner: People think
“how can she be sick in bed yesterday and out today looking normal today?”
“She is such a liar, she said she couldn’t go out his morning and there she is tonight out with friends”
“She must be getting better, finally this Lyme thing is going away”
“You look good! You look healthy, you must be better”
“How can she afford to go out when she was just posting her Gofundme yesterday?”
“All this posting on social media about being sick, and yet when I see her she looks fine”
“Should she be eating that?”

You see I am Shelley. If you are ill and reading this, you are Shelley. And I know dozens and dozens of Shelleys that have the same experiences. 
Most people don’t think twice about going out to eat, taking vacations, hanging with friends, going to movies, buying a pair of shoes…

But when you deal with chronic illness things are a little different. Have you ever considered how much judgment someone who is sick receives? And this is on top of all the physical, emotional, mental, spiritual and financial suffering. 
That’s why I write. Because most judgment comes from naivety and simply not understanding. 
I have to deeply think before I post anything regarding my illness; TMI? Who’s my audience? Sharing info with fellow Lymies versus relatives that are going to roll their eyes at another health post?

Am I going to get negative backlash?

Are people going to get the wrong idea?
I also think twice before I post anything about going out, being with friends, or anything that has to do with spending money….. 

You see guy can buy new shoes if you need them without a second thought. But if I do I have to assess who might judge me knowing that I struggle financially. See what I mean? And I also don’t want to hurt that friend that I said no to yesterday when I felt super fatigued when they see me out with someone today because I rested and feel a little better.

I also struggle with guilt and and moral questions whenever I do something fun or spend a little money. Am I “allowed” to have fun? Can I justify a purchase for myself? Even though I am. It by any means extravagant (I rarely go shopping, buy clothes, and almost never eat out) I feel funny when I do and feel I have to answer for myself to everyone I know. 
Conclusion. 

This isn’t a perfect essay, and I didnt touch on a lot (including judgment and negativity from the mainstream medical community that doesn’t understand certain chronic illnesses), but there are tons of bloggers out there and they are doing a great job being a voice for this community. All we can do is try our best, and have an extra dose of grace as we raise awareness to those who would judge us. 
*Please note that this essay is on the topic of judgment and scrutiny; There are a LOT of kind and understanding people who do take the time to learn, ask questions, talk and give support. Thank you all my friends and family that fall in this category. 💚

  

The Morning After (Payday)… Fun Isn’t Free

I did something yesterday, oh yes I did. Something normal, something fun.

I treated my sister for her birthday to go see Coldplay in concert. Firstly I had to make the decision how wise it was for both of us for two reasons; financially being that money is tight and medical bills are high, and whether I could justify using some of my personal savings on an extravagant birthday present. Second being that we both deal with chronic illness I had to weigh how much we would be affected by a long night out and take a gamble (being that I purchased tickets ahead of time) whether we would both be well enough to go when the event came. 

I went ahead and did it because Coldplay was here on the weekend right before my sister’s birthday (which seemed fortuitous) and she loves them enough I figured we would make it happen no matter how we were feeling.

We got nosebleed tickets (hey closer tickets were outrageous!), but it turned out fine because it was a great venue complete with fireworks, laser show, and audience armbands that lit up. It was fun.

My sister is happy and grateful and this is one the nicer gifts I’ve been able to get her. Thankfully also we are both having slightly better days with health the last couple weeks, meaning we can manage a bit more.

But, the reason I’m writing this is because this is a chronic illness blog, and as fellow sufferers know after fun comes….. pay day/days. 

It began actually even at the concert last night; I started feeling tired, and even in the middle of something fun I was enjoying I started wishing I could be home in bed knowing that even after this thing is over there would be a long walk to the car, sitting in traffic, and a long drive home.


This morning as I lay in bed writing this my entire body hurts..a lot. I’m swollen and puffy and completely wiped. Not only do I have the deep aching pain in every joint but I also have the deep tissue burning pain that goes with the autoimmune (Mast Cell/histamine) reactions of having some different foods yesterday.

Yes, this is “Pay Day”, and I know there will be more than one of them and I need to be careful the rest of the week.

So, is it worth it? I think so. Simply because I do things so seldom, and it feels good to be more normal once and a while; it gives me hope that one day the normal days will multiply and I can handle more, maybe even… gasp, having more than one activity on a weekend. We shall see.

For today though I’m glad my sister had something special for her birthday, even though she will be having her own pay days to follow. I will rest, recoup, detox, and try and make it to something tonight I promised some friends I would attend… yes, I am going to attempt two things in two days. Prayers appreciated 

A “Good Day” To Be A Lymie

Today is a good day; it’s currently 12:10pm on a Saturday and it’s still my “morning”, being that I’m still convincing myself to get moving and I haven’t done much yet.

I am coming off of several weeks of an antiparasitic/antiviral treatment that was pretty hardcore, and it was phase 2 having completed phase 1 the month before last. I feel like it takes a while for my body to reset and rebuild after the onslaught.  I had a UVBI blood treatment on Monday and I’m still not sure what my reaction is being that I felt energized the day of and not so good the rest of the week. (I was told I could experience some die off).

I’m tired. Even though I’m done with that particular protocol I’m still on a TON of supplements, and as of a few days ago three new prescriptions. Still have to deal with Candida, hormones and other stuff. I’m tired.  But body pain today isn’t too bad, fluid retention (my pesky persistent minion) is at about a medium. All things considered today is a good day relative to how crappy I have been feeling. I might even try and go for a walk.

I am mentally troubled this “morning” as I contemplate where I’m at as far as treatment protocol and what the rest of the year holds as far as medical expenses and whatever the doctors will want to do next. 11,000 went on the credit card just the last 6 weeks for our family’s medical needs 😳

That said; I got confirmation from my main two doctors this week that the protocol to kill the viruses and parasites was very successful and I’m in good shape as far as that goes. Which leaves the remaining battle being the autoimmune disorder factor in this long-term disease, and that’s been a huge battle. 

Bottom line my body hates itself and I hate it. Not a happy cohabitation. So my Mast cells and histamine, cytokines and gut all need to decide to start getting along or my slow decline into self-destruction will someday be successful. 

That said I am hoping that the remaining months of this year will see big changes, that I will start to experience what “normal” feels like, and that next time I have a “good day” it won’t be in parenthesis because of relativity, but “good” will actually be good


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