Brick Walls, Speed Bumps, Painting & Needy Dogs

What do you title a mish mash post that’s kind of an overview of random life stuff with no real object in mind? The above of course.

It was a rough week with fatigue and not quite feeling like myself (disconnected from reality), and dealing with some intense pain and yuckiness that only some girls know about… I’m still stretched kind of thin as far as having to be less social 😦  

So It is Saturday night and it’s been rainy all day and well, not much has happened. I missed a friends get together last night because of “too tired” (which I think shall henceforth be known as “TT”.  I didn’t do anything active or productive today also because of TT. And my fear is that “it’s happening again”; all we chronic illness sufferers know what “it” is. It’s being in that slump (which I’m so sad to say some of us never leave) where you kind of crawl out of bed, sort of eat, maybe take a bath, try to get moving, find acceptance in the “blah”, take pills, miss pills, forget pills, don’t feel like taking pills…. Another day in the life.

So why I am afraid? Because I’ve been blessed enough that even though I haven’t been great lately, I’ve been creative; creative to the point it feels like I’m making up for the years of losing that part of my brain. It’s been a huge a blessing, and God has been giving me abilities I’ve never had and never thought I would have. Today however besides just being tired and in pain I hit a wall while painting something prophetic that had been on my heart. I got frustrated, grumpy and stressed out and couldn’t go further. So rather than sit alone in my room (where I’ve spent what seems to be half of my life) I felt like I’d rather get out, tired or not and lose myself in a movie. Thankfully the theatre is only two miles away and sitting on your bum watching a movie takes no energy. So for over two hours I watched Wolverine’s last stand…. 

I got home to the love of my life Shiloh who laid her head on my arm and looked into my eyes like I had abandoned her for a year. This dog loves me like I’m her sun and stars 🙂 

Now I’m in bed, just feeling headachy and still pondering the chest pain I’ve had for over a week, and hoping that maybe tomorrow I can knock down that brick wall with the power of a paintbrush, and that TT won’t show up tomorrow. 


Yoga Pants: Stop Hating! Fashion’s Love Letter To Lymies….

Ok, so this post is going to be a little tongue and cheek; since chronic illness is such serious business let’s laugh a little while taking a totally honest and truthful look at the oft laughed at yoga pant and legging trend.

Ready? 

Ahh yoga pants; we love and hate you. Your wonderful, stretchy, giving, comfy, form-fitting cotton-spandex (or whatever) blend. Yes you can be brutal. You hide nothing and display our muffin tops, jelly rolls, donuts, jello thighs and all the rest of the glorious imperfections of our bodies for the world to see (and to turn from in horror!). You are not for everyone that is for sure and you leave imprints on our brains of those that just “shouldn’t” wear you that can’t be erased; like a sudden bright light at the back of our retinas.

And yet, to we the invisible illness sufferers, the chronically ill, you, our yoga pants and your cousin the leggings, are our best friends.

You never cut into our tender skin that is always in pain.

You don’t dig into our flesh with your unforgiving seams when our bodies swell and bloat. When we change sizes (sometimes within a few hours) due to our inflammation, you change with us rather than punishing us.

You don’t remind us by not fitting when our inflammation goes haywire and we can’t get into any of our clothes.

And did I mention you are comfortable and adaptable? We can go from lying on the couch with you being all casual and lazy, to putting on a nice long top or little dress right over you and be ready to go out the door. You dress up and you dress down with a cute pair of boots and a pea coat. 

You are also a great friend during doctor visits; because when things get invasive you hug us tightly but aren’t so bulky that you get in the way when doctors poke and prod. Oh and bless you Y.P. And leggings when we get on the doctor’s scale (you don’t weigh much my friend). 

Jeans and slacks have betrayed me (😡) and  I have said goodbye to them now for about eight years as the edema in my legs makes me wear a size 14-16 for my lower legs, which just doesn’t jive with my size 2 waist. 

But all hail my dress black yoga pants which serve me well everyday; lounging, sleeping, working, churching…. yes I still hide my legs in shame and humiliation and never sit down without something on my lap and draped over my knees to hide the hideous bulbous mess that is my lower body… but at least my yoga pants love me and don’t punish or judge 🙂

The swollen foot escaped!



The pants that love you back ❤ (not my butt 😉)

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 🌅

A “Bad Day” in Lyme Recovery

So today is sort of a mini follow up to Confessions Of A Functioning Lymie;

And honestly today wasn’t “bad”, but it wasn’t easy.

At this point after years of treatment I am not as sick as many, so relative to many I have no complaints. I have still been having some harder days lately due to increased work schedule and “?”. It’s the “?” That drives us mad. “What did I do to make things worse?” “Was it that slice of organic cheese? (Not supposed to have dairy)” “was it the fact that I’ve been having some dark chocolate lately?” “Could it be those little cheats can culminate in autoimmune fury?”
I woke up at 9am in order to try and go to church and forwent an extra hour of sleep that I probably would have gotten. But for whatever the reasons, today I woke up with my face puffy, feeling hungover and heavy and my limbs (especially my legs) full of fluid and enormous. (Took me 5 minutes to squeeze into my leggings). 

My POTS seems exacerbated along with the flare up and so standing at the sink to get ready left me a little breathless. I was 45 minutes late to church as I couldn’t get out of the house until after 11 (this time was spent trying to get moving, trying to wake up and doing a coffee enema to see if that helped the inflammation). 

The only reason I didn’t stay home all together was a friend wanted to take me out to lunch after church, and I don’t get out enough as it is.

So I am glad I went and I had a good time, but was uncomfortable the whole afternoon, foggy and in pain. My vision also gets blurry with increased inflammation .

And after this “strenuous” 5 hour afternoon out what did I come home and do? I went straight to sleep for a couple hours.
Still grateful I am mobile and done dealing with the severity of symptoms I used to, but a lot of days are still a struggle and every expenditure costs me spoons.

What a loving caring friend I have despite my struggles ❤️ 

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 💚

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. 🤑😫 #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 😉).

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 💚 ~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. ”