Don’t Miss Out On The Collateral Beauty 

I just watched a movie called Collateral Beauty; (you probably saw the trailer at Christmas time), a tale of a broken man and a call back to life from unexpected sources. Well not what I would call a great or life-changing film, I would say it was a good one, and it had some good life lessons that were given to us by “death”, “time”, and “love”.
One line in the film spoken by “love” to a hurting man who lost his child was “yes I was there in her smile, there in her laughter, there inside you in the happiness…..But what you need to know is that I am here also in your pain. I am in everything and the reason for everything. ”
I found this incredibly profound and in a sense very true; but instead of simple love as the world would understand it, I replace that with the person of Jesus Christ; Who in himself is the embodiment of love. “For God so loved the world that he gave his only son….”

He is the reason. He is the purpose. He is as relevant in our joy as He is in our suffering. He catches every tear and often we feel Him more closely in pain than in joy. 
In the blindness of our own humanity so often we fail to see Him working underneath the surface, but He is, even (especially) in our misery.

For He said He causes all things to work together for the good of those who are called according to his purpose. That is where our faith and our hope lies; nothing, I repeat nothing is wasted when we are in Christ. Quite the opposite. All things are redeemed for his glory and our good.

Sometimes we are lucky (blessed) enough to catch glimpses of Him working miraculously in the most difficult and tragic circumstances. When we get these glimpses of his hand at work sometimes we call it a miracle. But may I propose that this is the normal and not the extraordinary? Do we need to see with our eyes, or do we need to know what God is up to in order to believe that He is always, always working underneath the surface of all things at all times? For his ways are higher than our ways, his thoughts are higher than our thoughts. And in his omniscience He weaves webs with a million strands of intricacy with multi-faceted intentionality in every life circumstance. Not because of who we are, but because of Who He is.
So no matter what is happening, whether you see a purpose or not, whether you simply see the circumstance or maybe get a glimpse beneath the surface into the divine….. “just make sure you notice the collateral beauty”. 

When Life Punishes You For Living

Here I am again, posting on another “bad” day.

You see I’ve had some decent ones, even though I never feel “great” I’ve had consecutive weeks/months of having a better balance here and there. Inflammation has been acutely worse for weeks, but I’ve been able to maneuver around it to a point. Yes I’ve had days of crashing more and napping more, yes I’ve had to say no to going to church and Bible study because “extras” are too much. (Hey wait a minute! Maybe I’ve been struggling more than I’ve acknowledged). But anyway, then there is today; today when I feel my body is getting revenge for all my betrayal. Today when I feel stripped to the bone. I woke up at 11am (yeah I know), and still felt I could barely climb out of bed. Breakfast happened at 12:30 sitting in a detox bath, and I feel completely horrible: achy, stiff, toxic, beyond fatigued, heavy, swollen, fuzzy-brained. The autoimmune overactivity is high and I can both see and feel the fluid and pain.

So what did I do to myself to deserve this? That is always the question I first ask because self-blame is my automatic go-to. Well what I “did” was try being semi-normal for a few weeks: having to work a couple weeks full time, eating some “bad” stuff here and there (and by bad I mean bad for me personally; like dark chocolate, some organic mayo, some cayenne, a little vegan ice cream,etc.). Am I right in beating myself up? I am never sure how bad to guilt trip myself. It’s so hard when all you want to do is live and your body is just really not into that.

I am still counting the days until my new patient consult on the 14th at Sophia to address autoimmune issues and mast cell activation disorder (assuming that’s what’s going on). I’ve had a couple doctors confirm that Borrelia, Bartonella, Babesia, Epstein Barr, Erlychia…and all the rest including viral coinfections, are”fixed”, so I’m hoping the last hurdle is the autoimmune, but it’s a big hurdle. 

I have not paid any attention to fundraising for a long time; mostly being it makes me feel shamed, embarrassed, unworthy, guilty, and all the feelings that orbit the above. But more than that is my constant guilt of being a drain on my family. Thankfully family medical expenses have come down a bit from around 6,000 a month to around 2,000, which is good but still difficult. As my sister and I are about to embark pursuing this new clinic though they may jump up again exponentially, so I will put a link here so anyone that is able and led to help. Youcaring

So here I sit in bed on a Sunday afternoon wishing I could have gone to church, wishing I could take my dog out, wishing I could be out and about. Tomorrow may be better, I’ve been through this more times than I can count and I know that often things won’t be so bad the next day. On a day like this things always feel so bleak, but I know that tomorrow always brings new hope and a different viewpoint.

I’m glad I write on bad days, when I can’t move and I hurt and can’t think well; Writing gives me a sense of purpose and makes me feel I’m still here, still fighting.

See you tomorrow 🌅

The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

Nobody is normal. 
Everyone is unique.

That said,  long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.

And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Emotionally unstable

Lacking faith

Hypochondriac 

Lacking strength 

Or “_____” fill in the blank 
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why. 

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full. 

One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years. 

You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain. 
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy. 
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”

… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”. 

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.  
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were. 
They post because:
They want fellowship,

They want friendship, 

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten

They want to have a glimpse of normalcy and online may be all they have

They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!

Everyone needs people! When you are sick and isolated online is your people!

We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day. 
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out.  

It is: Having an outlet, versus internalizing everything

Isolation, versus reaching out

Honesty, versus putting on a happy face

I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the  anxiety we go through on what to post and what not to post. 

It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:

You get the positive feedback from the chronic illness community;

 “thank you so much for sharing, I am not alone”.

  “so glad to hear another person’s perspective”.

“Thank you for being honest and blazing a trail for others that will come behind you.”

This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering. 

But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.

This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else 💚

Immunity Essential Oil Blend


So I stumbled upon this article (leading to a website where you can purchase of course) a “miracle” immunity and flu prevention essential oil blend. (Made by what seems to be a small but high quality company, not the “big Two” we all know).
So anyway after reading testimonials of people fending off colds and flu and people who were sick and recovering quickly with using this blend; I finally found what was in it! There was of course no “recipe” for how much of each ingredient, but I am fairly savvy with essential oils (hot versus not, strength and usage). So I made my own flu/immunity blend and I want to share with everyone! 
Here are the oils and ratios I used:

Lime 40 drops

Lemon 40 drops

Spearmint 20 drops

Peppermint 20 drops

Eucalyptus 20 drops

Rosemary 20 drops

Cinnamon 15 drops

Oregano 8 drops

Clove 20 drops

Mix together in a bottle and apply as liberally as you are comfortable to chest and bottoms of feet (being careful on chest being that oregano and cinnamon are “hot” oils). Also inhale off and on, and a drop or two on throat if sore throat is coming on. You can also diffuse into the air. 
Both my parents are desperately ill and (so far, fingers crossed and prayers offered up) I haven’t gotten it yet.
I recommend only using doterra or Young Living brands as all others do not have the quality or purity or high standards. You do get what you pay for! I have test purchased from other lesser known “high end” companies that had good ratings, and found them lacking. 
* of course you still need to do all the usual:

Drinks lots of water

Take a ton of vitamin C

Get enough sleep

Wash your hands often

Avoid touching your nose

Eat cleanly 

Some Honest Thoughts On A Sunday Afternoon… When Life Reshapes Hope

I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.

I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. 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 rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?

Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. 

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 (5?) 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 am wondering how to rebuild hopes that are now built on a different foundation of what is possible.

I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it 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? Honestly I’m at a loss. 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.

So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. 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 for exhaustion. 

So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see. 

The Things That Slip Away….

My posts usually start with a moment of introspection; today is no different. I was standing in front of the mirror and happened to look at my ears, and what I noticed (not for the first time) was that my piercings have grown in. I sought to try and remember the last time I wore earrings and surprisingly I realized it may have been as long as a year or two. The significance of this is that it is just one more thing that would in different circumstances be just part of a normal routine… a no-brainer part of life. 

I don’t think many people understand how drastically different the day to day life of a chronically ill person is and I am realizing what is lost is in the small things. You see people may understand when illness keeps you from not attending events, not being as social, tiring out easily, the limited diet and all the rest, but I think they may not comprehend how the life perspective of an ill person is so very different and how daily life has been stripped to it’s bare bones and what is lost is all the small things. 

If it’s “extra” it doesn’t happen

So I’m a girl and many things I may mention are specific to my gender (after all guys let’s admit we are higher maintenance). 

My routine when I am going to leave the house is not what it once was. I remember the days when I spent more time on my hair, when I wouldn’t leave the house without full makeup, when I actually put thought into an outfit and (gasp) yes used to have a decent fashion sense.

This isn’t true anymore for a few reasons; apathy/lethargy/indifference/listlessness/dispassion/detachment… fatigue. It is that thing I have talked a lot about I call survival mode. You just shut down and live one foot in front of the other, shuffling, not running or thriving. I am learning that beyond just chronic fatigue and brain crud there are some real physical reasons for this apathy/detachment that accompany long-term illness, but that’s not the point of this post, rather it’s the effects of this on your life.

💠I can’t recall the last time I used a flatiron or curling iron. 

💠I almost never wear lipstick.

💠I almost never think about jewelry, much less bother to wear it.

💠I do pretty minimum with makeup just enough to make sure I don’t look heinous. *

*accept for some doctor or IV appointments, when I don’t care so much about looking heinous.

💠Personal hygiene suffers. No I don’t mean I don’t keep clean, but anything extra like plucking eyebrows, shaving, taking care of my nails and other stuff doesn’t happen.

💠My shoes only get changed and replaced when they have holes in them. 

💠I haven’t enjoyed clothes for years and I don’t like much less enjoy anything I wear. Clothing for many years has been about nothing but covering up my edema and the parts of my body that betray me. And it’s not like I have extra money to buy much in the way of clothes anyway. 

Confession: I am never comfortable in my body and it is almost it’s own entity that I am tied to with no release. It’s constant pain in varying degrees, the water retention is a constant source of discomfort and embarrassment and even if you think you have my full attention when I’m with you, you don’t. A piece of my mind is always occupied with my physical self and the aforementioned manifestations. 

There is probably a lot I’m not thinking about right now, but I guess I am just getting to convey what bare minimum looks like for the chronic illness sufferer, and how there is no such thing as fullness or completeness, everything is only a measure including your access to yourself. 

We are all only pieces of a whole, percentages of 100, slices of a pie. You may not see much of us or get 100% when we are with you, but we don’t get that from ourselves either. It’s all those little things that have slipped away….

When You Find You Are U.I.I.S. (Undatable invisible illness sufferer)

This one’s for the single ladies (or gentlemen) who find themselves not only chronically sick, but chronically single.  I almost titled this post “girl interrupted”, but for me it’s not like I ever had a steady healthy life to interrupt, it’s more like health troubles have been the gremlin to the airplane of my life since my teen years.

Tonight for reasons I cannot even reconcile to myself, I started watching one of those “reality” (cough) dating shows tonight. I really hate most of these shows because they are not anywhere close to reality, the men tend to be immoral, shallow, narcissistic… The women are trashy, vacuous, desperate, catty….. 

I will only say I am watching (hopefully) a slightly better one on A&E, but still… This behavior is unforgivable. As I watch these people who for their own various reasons subject themselves to the world of online matchmaking, it made me think of loneliness and desperation and the lengths people will go to to find love and companionship. 

Being chronically ill can be incredibly lonely, whether you have close family or not (thankfully I do❤️). And like I have talked about in past posts most C.I. People see both friends and family walk away as illness goes on. Even if you are somewhat functioning that doesn’t mean that dating is easy or possible. Most people have avenues to meet others that would fit their criteria for a significant other. But what about the chronically ill? Even for the “functioning” chronically ill this may be close to impossible.

I function; meaning I am not bedridden and I can hold a job, that doesn’t mean every day isn’t a struggle, but I do. But functioning in what’s required of me means sacrificing everything else, and a lot of the time there’s not much left of me. What is hard to navigate is that I seem to have a few months every year when things seem pretty good; I have better energy and start being social again, being able to exercise, and feel reintroduced to my own humanity. It’s in these times I think “well maybe I can start to think about finding someone”, but then inevitably things take a dive again and I go back to survival mode, bare basics, just getting by. For me I took another dive right at the end of May and I had to start saying no again to social activities and almost everything outside of working. 

How does one date a hermit? In my personal experience I guess they don’t.

SO WHEN YOU ARE SICK YOU: 

YOU CAN’T MEET ANYONE

Firstly you would have to actually meet someone. But how if you don’t go out? There are no weeknights out with friends. There are no group social activities. Church attendance may stop. Any weekend activities like hiking or day trips may be too much. And what if you feel like you both look and feel like crap and just the stress of even thinking about getting yourself presentable and putting on a good face is too much? It’s so much easier just to sink back into isolation because self-care and life period is enough to deal with.

FACE IT, YOU ARE HIGH MAINTENANCE 

If you are chronically ill it is exhausting being you, how much more so for those closest to you? I see how close family is affected by the ones they love who are ill, and it’s a horrible strain, especially when there’s no end in sight. But these people already know and love us. It takes a long, long time for new friends that come in to my life to “get it”, even the ones who are sweet and understanding have a hard time grasping that what are normal activities for them, even their daily routines, are not apart of my life and not possible. It takes people time to see that while your body may look okay from the outside it serves as your prison of pain and fatigue. 

But how would you approach a possible new partner with your life? (We are assuming that somehow you have made it past the first hurdle of actually getting out). I mean, I wouldn’t want to date me! I wouldn’t want to deal with someone who is always going to say no every time I ask if they want to go out and do something. I would get frustrated when I would want to talk and visit and they are just shutting down at the end of the day and don’t want to talk. I wouldn’t want to bend my life around someone who can’t eat out, can’t be active, would inhibit me at every turn.                       I wouldn’t want to be tied to a person who could never fully support themselves and who would drain me financially with medical bills. I would tire of all the health talk, all the time.

Run boys! You don’t want this.

YOU AREN’T ALL IN

I am not present for other people the way I want to be, a lot of the time I am exhausted dealing with me. I do try, I am an uber-communicator and reach out to others all the time and do the best I can to support others in their struggles and try and be diligent in prayer for my friends and family. But I can’t imagine having a spouse and trying to be there in the capacity that they would need. I may not be able to hold up my end in a household, or relationally. 

More than that when I am going through a hard time physically I am fairly aware that I go through not quite being myself mentally or emotionally as well. Whether it be more inflammation on the brain, or toxins or whatever, I am well aware that my ability to rationalize or consistently think clearly is affected. I also lose the creative and motivated sides of myself. So in a very real way I am not fully myself.

Back in December I went to hang out with a new friend one-on-one for the first time (just a friend) and later he said that he felt he had to drive the conversation. Firstly I was a little a nervous, but what he didn’t know was that although I was in a better cycle with my health,  I was in pain, and had some brain fog… That’s the worst because you are searching your mind with what to say, proper responses, and adding new threads of conversation, all the while using a micro machete to cut through cobwebs in your head. You may seem okay and even fully alert objectively, but they don’t know you are fighting through a few obsticles to put on a normal persona.

Friends that have known me a while can tell a definite difference between clear-headed me and me on the days things are foggy. You see if you don’t know me it looks like my personality is different. If I ever seem quiet and a little shut down its because I literally am, but it’s not my personality or choice. 

So how do you begin a new relationship like this? Well if you figure it out let me know.

IN CLOSING

So thankfully although I have days here and there of longing and loneliness, something broke in my spirit with this last round of ill health and I am no longer looking for marriage and family… It just doesn’t seem possible. Can God make it happen? Yes I know He can, and if He drops someone on my doorstep (and you know it has to happen this way because I don’t get out) that would be an unexpected joy.

So a shout out to my fellow U.I.I.S.’s, for now we will just hunker down, survive, take care of ourselves and (for me) serve God the best I can with what limited spoons I have.