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 ๐Ÿ’š

A So So Day In The Life

Although I have posted about it on Facebook, I have not blogged about the insomnia I have been experiencing the last several weeks. Now I have experienced insomnia in different levels my entire life, and what I would consider a good night sleep would be waking up a minimum of 2 to 3 times and being able to fall back to sleep without great difficulty and maybe getting around eight hours. But through this chronic illness journey I have definitely gone through periods of time where the insomnia has been much worse. During my initial two years of Lyme treatment after being diagnosed I was put on Ambien by my LLM.D. That drug gave me the best sleep of my entire life, but if it’s not meant for long-term use and it was absolutely excruciating weaning myself off of it.

So during the different phases of treatment over the last several years my insomnia ebbs and flows in severity. The last couple weeks with re-entering a brain detox protocol along with a liver protocol, its been worse again and I have been averaging 5 1/2 to 6 1/2 hours a night. Fast forward to last night when I decided to really up the sleeping aids to help me get a decent nights sleep being that I do not have to work on Wednesdays. So along with my usual nightly protocol (GABA, L-Theanine, Cannabis Oil) I added Melatonin (which I don’t take regularly for several reasons), magnesium, and a big dose of Benadryl. Well I got the most sleep I’ve had in weeks, but was so hung over today I could barely get myself up off of the floor until 1p.m. It was actually hard to hold my head up and even to breathe for a while. Ahh the trade offs. For those of you that may kindly suggest other sleep aids to me, I want to say I have probably tried them, And the ones I don’t use I don’t use for a reason; either side effects or they stay in my body so long that I am horribly hung over for days. 

Anyway at 1 PM I was finally able to get myself out of the house and go to Les Schwab to get my tires checked And rotated, which I had been putting off for weeks since my tire lights had been on. I had them do a check of the rest of the car while I was there and not too much to my surprise my car is in need of about $1400 worth of work being that it is a 2008 and it is just one of those things. ๐Ÿค‘๐Ÿ˜ซ #stress #financialworries 

I also had a follow up today that was scheduled last minute with my doctor in Anacortes to try and address the autoimmune flare up that has been going on the last several days. I mean seriously, should a very tiny tub of organic hummus cause searing burning pain, inflammation and misery for days? I don’t think so. Thankfully my doctor does not think so too and he still working away at getting the autoimmune overreactivity under control. Along with the protocol he already has me on, he now put me on a Chinese herbal blend to help with shallow breathing and to increase circulation and blood pressure. (Because I am a pretty low, shallow person naturally ๐Ÿ˜‰).

So now at the end of my day I’m sitting in a detox bath and mentally prepping myself to go to work tomorrow. My mind is still heavy with thinking about the negativity online and all the verbal attacks and untruths going on on the internet; in the health community and just the world in general. I was questioning how can someone stand up for truth and be a peacemaker at the same time avoiding getting into heated arguments? The internet is rife with untruths being spread like wildfire, misunderstandings, rash judgements, hard hearts and closed ears. It crossed my mind that Jesus is the only one to ever have done that perfectly; been a truth teller and a peacekeeper…. and they still killed him! 

It is Amazing how so much is taken for granted to be true without actually fact checking,  and other things are so blown out of proportion that they become untruths. (The Pharisees adding hundreds of their own “truths” and laws to scripture anyone?) (bueller?) 

Being an advocate for absolute truth and an advocate for the chronic illness community, I think it is a really hard line when you are attacked. All I Can say is that I pray for wisdom and how to speak truth and kindness and not to waste my time on those whose ears are closed and whose mouths are open and spewing flames. 

So, this is not one of those big advocacy posts to get a point across, or to share something deeply significant about the chronic illness journey, it is one of my more boring and quiet days where I just felt like blogging a little. Blessings to you all ๐Ÿ’š ~Jennifer 

For Your Consideration… What to say when you are put down for “being your illness”

So I have been experiencing a lot of activity on one of my latest blog posts and I have also been reposting some others that are relevant to the struggle.

I have been getting saturated with great comments on those so grateful that someone is voicing their experience and giving credence to their experiences to their friends and family.

That said of course I get negativity once and a while (as we all do); but what really hurts is when it comes from someone within the chronic illness community. 

I see it too often (mostly on the Facebook feeds of others) attacking because someone’s experience is different than their’s, or they think the person is too vocal, or whatever….

Why do we do this? Why do we hurt each other? Why are we so narcissistic that we seem to think how we think or feel or our experiences has to universal and be exactly what everyone else’s experiences should be that has difficulty and is sick? Apparently this is a mindset that allows for zero tolerance or understanding that diseases manifest differently in different people and affect our minds, bodies and chemistry differently. Wow, what a concept!
So I offer up to you the following comment left on one of my posts (that was written to try and raise awareness and understanding),  and my re-buttal to this comment. I also want to ask you; the chronic illness community to join the conversation and share your experiences. I will ask that there be no attacks, swearing, name calling or ugliness, rather let us use this as an opportunity and platform to further raise awareness and keep the conversation and testimonies going.

Here we go..

Negative Blog Commentor:

“I have what is considered an invisible illness (a pretty freaky one), and honestly, at the end of the day, I can choose to live a normal, productive life. Are there challenges? Sure. But we all face challenges. ALL of us. Some are physical. Some are emotional. Some are psychological, financial, relational, career-centered, social… you name it. 
I’m uncertain as to why so many sufferers from invisible or even visible illnesses choose to be victims daily. It’s a choice to keep life in perspective, to keep moving, and to realize we’re not special because we suffer. Who doesn’t suffer? Did you know that the average person in the western world has, on average, 5 things going on with their body that could be/are serious? Illness doesn’t excuse us from life, so live it fully. 
Maybe you’re not datable because you insist on BEING your illness, 24/7. Is it all you talk about? Post about? Think about? Is there nothing more of you than your illness? Who wants to date someone who finds their identity in being sick? Do you bring your illness up every time you meet someone? Talk on the phone? Go anywhere? If you know to converse about nothing else, then you’ll stay single. 
Stop being your illness. It doesn’t make you special. It makes you common. Be the best parts of YOU… because you are not your Lyme, fibromyalgia, diabetes, epilepsy, MS, lupus, or any other invisible condition. You are YOU. Offer YOU. Potential mates don’t want to hear about nothing but your illness any more than you want to hear about all their exes, money issues, terrible living arrangements, bad pizza, or abysmal grades if you’re in school. Be you… stop being a victim.”
My rebuttal: 

“(Person’s name), I had to pause, think, stop and pray before responding because my immediate (fleshly) reaction was anger; anger that you have projected your own experience onto others without understanding that even though we all suffer chronic illness, the nuances, experiences, manifestations, brain chemistries, how we are individually effected, where the diseases have most effected us, our life paradigms, backgrounds… and SO much more differ radically! I cannot say this with enough emphasis. 
So first I want to praise you for your outlook and that you are “not your disease” (none of us truly are) and that you have the ability and will to live and thrive by fighting through. Not everyone is you. 
May I offer up to you for consideration that most of us want that very same thing. Who “chooses” to be a victim? Far fewer than you obviously think.

Maybe (just for the sake of argument) a very small minority that already have psychological issues or have an abusive background or “—–” might in fact use illness to further that inner victim mentally and to feed that need to get attention.

BUT! Most of those I have come across (by a landslide majority) who are suffering from chronic illness that has re-shaped their lives and the very essence of who they are… are desperate to be normal, to simply live and not be encumbered and isolated and in pain, fatigued beyond functionality….and missing out on life. 
I also want to let you know that having been chronically ill now for decades, and having experienced all the facets and manifestations (highs, lows and everything in between) I KNOW what it is like to be so physically and mentally (by this I don’t just mean mindset, but literal bacteria that has crossed the blood brain barrier affecting my mind in ways I had ZERO control of) sick that I was incapable of just “being me” or even having access to parts of my own mind or personality. 

I do understand that if you have not experienced this kind of illness you will have no comprehension, and I am honestly glad that you haven’t.

Consider yourself lucky, blessed, fortunate… there are many who are not.
I also want to add that no, in fact for the most part in my personal life I do not go around talking about my illness all the time. It is not the first thing I mention when I meet new people, it is almost never talked about among my coworkers, even with my closest friends we focus on other things, because I wouldn’t want to hear it all the time, why would they?

Again I also want to add that like I mentioned before my health goes up and down, I have about 2/3 of the year accumulatively that I am really struggling, and it’s in those times that I tend to write more about said struggle. But, I have good months where I feel much better and… guess what? I use it to my full advantage snd be as active as I can and as social as I can and LIVE and be me. I jump at the opportunity when my brain and body allow. And I am not alone. In fact it is pretty common for chronically ill people to overdue and set themselves back when they are feeling better because this is what they do desperately want. Because they know they are “not their disease”. 
So instead of judging others harshly, accusing, condemning, bad-mouthing and making great big assumptions that EVERYONE is exactly like you and your experience with a chronic illness, (because after all according to you everyone has a clear head, full access to their faculties, and an iron will to overcome anything and can’t possibly be so sick that they can’t just get out there and live) and should just pick up their bootstraps and “not be their illness”. 

Maybe do some reading and research, especially on neurological effects of Lyme and other illnesses that can cross the blood-brain barrier and/or mess with your hormones and other functionalities that make you “you” so that you can have a small piece of empathy for those that are less fortunate than you and desperately want to thrive instead of just exist.
*also I might add that I blog not to whine or “be my illness” but because I have deep empathy for the suffering and wish to give a voice and some comfort to those that have none. ”

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.

๐Ÿ’ I can’t recall the last time I used a flatiron or curling iron. 

๐Ÿ’ I almost never wear lipstick.

๐Ÿ’ I almost never think about jewelry, much less bother to wear it.

๐Ÿ’ 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.

๐Ÿ’ 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.

๐Ÿ’ My shoes only get changed and replaced when they have holes in them. 

๐Ÿ’ 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….

Are We All Crazy?/Sanity Is Relative

I think “crazy” is not so easily definable as we think sometimes and has levels and facets, different causes and effects. I think we can all dip into “crazy” from time to time in moments or seasons when our view of the world is warped through the lens of something that throws us for a loop.                                                              Another definition of crazy is “not in one’s right mind.”

I have asked this question of myself many times on days when my brain and emotions betray me, when my view of the world and my situation in a given moment seem warped; “am I crazy?” Not all the time of course, and not as a constant, but there are times when I know I’m not in my right mind. 

Now we know that Lyme and coinfections cross the blood brain barrier and can literally infect the mind, but I think many times it is more complicated and more subtle things going on than even those factors. You see the entire life paradigm is different for people with certain chronic illnesses and not in rhythm with most people. The box we live in and our life experiences are very different, especially after living this way for many years. So I guess it makes sense that we are not always normal. After all, normal is a sliding scale based on majority.

The idea for this post came lying in bed last night after seeing posts from other Lyme/Chronic Illness sufferers on Facebook and thinking that what we suffer physically, cognitively and emotionally can make our viewpoints and behaviors pretty skewed:  I see desperation, scattered emotions, TMI, prolific postings, saying things publicly that shouldn’t be said, weird viewpoints that seem to come from places of isolation and disconnection. But I sometimes do it too, and honestly I struggle sometimes with how to balance being honest and “real” in the moment and when it would be best to keep stuff to myself. What’s the answer? I don’t know. I do try and consider my audience; my blog and Lyme page is primarily for fellow sufferers and those that will come after us, to know they are not alone. It is also for friends and family of the ill to get a window into this world. But from time to time I do regret some things I put out there, primarily to my healthy friends, I really must come off as cracked once and a while. I start to second guess myself especially if I get no response to texts or emails and I think people must have a negative opinion of me.

 But if we are talking brain stuff, even beyond Lyme and coinfections there is so much that effects the mind it is incredible. Honestly when I consider the complexity of our brains and the 100 trillion (yes, trillion) neuron connections in our brain I am in awe that the chronically ill with all that we are dealing with are not stark-raving mad. Really  We are fearfully and wonderfully made.
I had two doctor appointments this week and even though these two brilliant physicians come at treatment and diagnosis from different directions the conclusions are compatible. I cannot even begin to repeat the science and biology that was explained to me by these two doctors who can talk complicated biology and genetics like most of us do daily English about what is going on in my body, but I remember a few things: Pooling dopamine in my brain, dysautonomia, receptors not communicating, parasympathetic nervous system not doing its job….. But what is great is to get validation on the feeling of “disconnect” and yoyo emotions (aka crazy) and knowing that there are real physical reasons behind it. This also helps me understand the ebb and flow of having cycles where I don’t feel in my right mind and not knowing why I feel more normal on some days than others. 
So what’s the point of this post? Not sure. But maybe if your chronically ill friend that “looks fine” doesn’t always seem rational, maybe they are experiencing a little slice of crazy.