Self Portrait With War Paint- My Silent Battle

Self Portrait with War Paint
digital art

My Silent Battle

I have battled monsters too small to see.
I have wrestled with monsters larger than Goliath.
I have fought quiet voices without a face.
I have brawled with voices louder than my scream.

And yet all you see is my weakness.

I am a warrior, a fighter, a soldier, a hero.

I am a champion, even if no one can see.

My silent battle rages on.



Dedicated to all the warriors out there who fight a good fight every single day...no matter what that fight may be. Make it a great day today.
xo

Beautiful Beyond Description- Being Comfortable in My Chronic Illness Skin

There is thick crust in the corners of my eyes as I wrangle myself out of bed at 3:30AM. I can't sleep. Again. I'm so tired...bone deep exhaustion and yet sleep is terribly elusive. I tiptoe to the bathroom the best I can with aching joints and stiffness beyond my years, not wanting to wake my sleeping husband. After staring at a blinking clock for over an hour, I can't stand it anymore. I have to get up. I want to crawl out of my own skin. After using the bathroom, wrapping myself in a blanket, and rubbing the sleep from my eyes, I go upstairs and turn on a dim light as not to disturb anyone. The soft glow of my computer screen turns my face into a pale glow, ghost like. And I write.

This is life now. This is me. This is the unpredictable yet predictable daily struggle with a chronic illness. This is where I am left after Lyme Disease and co-infections have redefined my life to a before/after. I am me but not me. I am ugly and beautiful. I am exhausted but wide awake. I hate myself and yet I am totally in love with me. I struggle and I persevere. I lose friends but I gain a tribe.

I took one of those silly online quizzes the other day and my results said I was "An Optimist." I smiled when the description revealed itself because it was accurate (for once!)...I am an optimist. I may play ping pong in my brain with thoughts of despair and triumph, but ultimately I am learning to see the silver lining on a daily basis. I am teaching myself to be confident in this new Chronic Lyme Disease skin I wear. Despite the many challenging things I face each day, even with dark circles under my eyes, and my slow moving, creaky body, I am beautiful. Beautiful Beyond Description.

xo

A Chronic Invalid

A chronic invalid has but one thought about his identity: He doesn't want to be a sick man. 

The rest of the discussion seems frivolous to him- an immense privilege of the healthy.

Still, I'm a novelist, and so I pursue it.

Nancy Horan- Under the Wide and Starry Sky

A digital self portrait created from inspiration by the above quote.

Many of you have been messaging me and asking me how my latest doctor appointment went. To be honest, I haven't really wanted to talk about it, so I have been unusually quiet. It just gets so tiresome constantly talking about being sick and why I am sick and why I am not getting better. But, I also know a lot of you follow my journey because you have your own journey to walk and it makes us all feel less alone if we do talk about it, so here you go...

So, because this latest appointment with a doctor who specializes in biotoxins, was very confusing and overwhelming, I am not sure I can explain it all. Basically, I have told you before that I have a genetic mutation that slows down my body's ability to rid itself of toxins, which then complicates recovery for chronic illness patients. Well, after further, more detailed testing, it turns out that I have what's called a 4-3-53 multi-susceptible genotype that doesn't recognize ANY biotoxins in the body...so it actually isn't that my body rids them slower, it is that my body doesn't rid them at all. In addition, the doctor believes I am still being exposed to biotoxin causing elements such as an active Lyme infection or mold because despite being on a drug that should bind to the toxins in my body and flush my system of them, I am not getting better. So, that must mean I am being re-exposed to the toxin causing elements over and over.

We are in the process of having our house tested for mold and I am hoping to get the results by the end of the week. If that test is negative then chances are, by process of elimination, the biotoxins would probably be coming from an active Lyme infection.

Because I have so many toxins floating around freely in my body, my hypothalamus, a section of our brain that controls just about everything, has taken a terrible hit. (By the way, according to the doctor, these toxins can travel to all parts of the body, wreaking havoc and I have already failed a neurotransmitter test showing that neurons in my brain are not firing correctly.) Not one hormone that the hypothalamus produces to control the body's functions came back at normal levels. Not one. That in and of itself has it's own waterfall of complications, one of which is my body is producing WAY too many TGF-B1 proteins (highest level should be 2,382 and mine were 10,220). This means that my own immune system is exhausting me as it takes a lot of energy for your body to produce this much. Also, it means that with that many immune proteins in my body, I present very similarly to an autoimmune patient because they can attack my good, normal cells as if they are intruders (thus explaining why I was at one time incorrectly diagnosed with an autoimmune disorder.) AND, it means that with that many proteins floating around in my bloodstream it can cause "clutter" and slow down and nudge out other important "stuff" that should be in my blood.

And, if that wasn't enough, I have an active and current EBV infection (the virus that causes mononucleosis).

All of these issues have caused me to revert back to a "nurture, rest, and rehabilitate" frame of mind and through discussions with my doctor and my family we decided that I needed to stop Homeschool Co-op and real estate photography for the time being. I am still homeschooling as long as I am able but that is my only major commitment right now.

To get a much more precise and educated description of some of what I am dealing with, you can read this blog post by a much more eloquent writer.

To see the same diagram showing the biotoxin pathway that my doctor used to explain all of this to me, click here. Note that every single three-letter substance (VIP, MSH, AVP, etc.) the diagram shows, not one of mine came back normal levels.

And if you could care less, I don't blame you.

No more talk about illness after today for a while...so...I will see you back here tomorrow with another new digital art piece.