Invisible Me (4) Intruders, Soldiers, and Hope  

Invisible Me (4) Intruders, Soldiers, and Hope  

Feeling a bit frustrated at the moment. On top of being in a long and chaotic flare with eruptions of different and some new symptoms throughout, I’m trying to go about life as “normally” as possible. Over the course of the last couple years I’ve become an avid researcher which, often times, can lead to serious frustration and sometimes feelings of hopelessness. I’m very well versed in Hashimoto’s Disease, Endometriosis, Fibromyalgia and Lupus SLE (which I’ve not been officially diagnosed with yet), but today I had looked into the CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) part of my diagnosis. It’s very interesting material, although complicated in many ways, including a general consensus for diagnostic markers that the Docs can agree on. I always find it disturbing when the medical community is in this kind of divisive quandary because, ultimately, it’s us…the patients, who suffer. As if autoimmune patients don’t deal with enough already, between getting a doctor to take us seriously, to the lengthy process of getting sound and proper diagnosis, and the employers, co-workers, friends and family who lack compassion, due to their ignorance, and the shameful craziness we try to keep at bay by remaining positive…or at least faking it… On top of all that, we are dealing with chronic, debilitating pain, among a slew of other horrible symptoms, while fearing what new and devastating symptom might pop up today; like the horror music leading up to the terrible surprise of a scary clown faced jack in the box! It’s beyond exhausting. 
The rabbit whole, that is “autoimmune disease”, leads us on a very complex and difficult journey, and there are many important decisions to be made along the way. During the most difficult times in the final couple years of my fire service career, seeing a therapist was crucial for me. I had to dive into myself and my psyche because I was so distraught by what was occurring to my body, my career and life, and I had zero control over any of it, which was very difficult for my type A, goal oriented, problem solving kind of personality. My therapist helped me acknowledge my feelings and decipher what was rational and what was not. There was a time I felt like giving up on pushing for some concrete answers and diagnosis, and he helped me to persevere. I don’t care how “strong” a support system you think you have, it’s wise to avail ourselves of as many resources as possible, and when there are emotions, feelings and fear involved, it’s good to have someone who is not emotionally invested, on such a personal level, as a sounding board and guide. There are also many wonderful forums through social media now that are made up of communities in broad terms, like Invisible Illness, or more specific, like Fibromyalgia. It’s so easy for us to feel alone, as these illnesses can be incredibly isolating. It’s important to realize that there are thousands upon thousands of people out there that are in a similar situation, many of whom are only in the beginning stages of their journey, and not even diagnosed yet. Reach out. Helping others has a profound way of soothing our own pain.

Pulling myself back in and onto the subject of research…I always kind of feel like I’m trying to unravel 15 or more sets of jumbled Christmas Lights, when I research. Terminology alone, has kept me busy. Thankfully, I’ve been in the body business my entire adult life. First in Fitness/Preventative, then Fire First Responder/Emergency, and that helps. I really do get tired of seeing; Cause Unknown and NO Known Cure, and no wonder it’s difficult to diagnose when so many of these diseases or syndromes have the same signs and symptoms. I will say that, for me, the “unknown cause” and “no known cure” statements are like holding up a big red cape to me. The fact that I’m 1/2 Irish, 1/2 Norwegian, and an Aries means I was born with horns. When someone tells me that something can’t be done or is impossible, I’ll be enjoying my victory dance, while their breath was wasted. As much as possible I try to live in the realm of possibility, rather than defeat. 

So…what have I learned lately? That my gut instinct is pretty darn good. Obviously, I’m not an MD so what I go into next will largely be my personal experience and journey.

 I’ve always felt that there is a viral connection with my immune issues. More specifically, Herpesviridae or the Herpes Virus. Even more specifically, to me, 3 of the 5 types of herpesviridae;

1. HS1-ORAL. Cold Sores on or around the mouth. 

2. Varicella Zoster-

a. Childhood/Chickenpox b.Adult/Shingles

3. EBV Epstien Barr Virus aka/Mononucleosis 

Once infected with any of these viruses, they remain in your body forever, and go into what’s called a latent phase. I’ll describe it like the virus is sleeping, and most of the time it’s never a big issue again, after the initial outbreak. However, for some of us unlucky souls, that’s the beginning of what will be many, many more related illnesses and outbreaks. 

While many people have had chickenpox, it will never again be an issue, unless it rears its head as Shingles, during adulthood.

If you’re like me and get cold sores or fever blisters, you may not even remember the first time you had one. Often it’s passed by an infected family member giving us a hug or kiss. They are very contagious so it’s important to be mindful of that, if you do get them. In my experience, cold sores are a sure sign that my body is severely stressed and under attack. If I have multiple cold sores or if they are accompanied by canker sores (inside mouth) or sores in my nose, you can be sure that I’m feeling terrible. For me, any of these are always accompanied by swollen glands. Nowadays it’s not uncommon for cold sores to show up when I’m having a flare.

Interestingly enough, most people have EBV and don’t even know it. They may not have even come down with Mono, aka, The Kissing Disease. There is a blood test which can confirm whether you have it or not, but most people will never even have a need to know.  If it reoccurs as Chronic EBV, it can be very serious, but I won’t go into that, as it’s irrelevant to what I’m talking about. EBV has been the center of attention for  theories concerning autoimmune disease, which brings me to the next piece of the puzzle.

Molecular Mimicry. This is an extremely complex subject and I’ve poured over countless case studies, hypothesis and theories. Again, I’m going to use my own words and my own experience. I highly recommend looking up the term as connected to autoimmune issues. In my mind, I kind of view this as a, “which came first, the chicken or the egg” situation, because the answers may be in past generations. Molecular Mimicry is only a piece of this puzzle, albeit, an important one, I think. 

So….here I have 3 herpes VIRUSES that remain in the body forever, after initial infection. Where do they live? Within our tissue, down to the molecular level. These buggers have learned how to blend so well that they resemble our healthy tissue. Now let’s say I did yard work and way overdid myself, skipped a meal, and didn’t sleep well that night. I have just laid a bunch of stress on my body in a bunch of different ways. The next day I go grocery shopping and am exposed to the common cold, which is also a virus. The next day I’m coughing and feeling fatigued, and now my immune system is sending in the troops to kill the cold virus I got. 

It’s important to know that any sickness you get, like this cold, reactivates all of those latent or sleeping viruses, that will then activate the production of antibodies by your immune system, which then attacks the virus. The problem is that because those viruses have mimicked your healthy cells so well, in order to hide; now our soldiers start destroying some of the healthy cells and tissue. What’s even more amazing is that our immune systems are so smart and efficient that they have a memory, and as this war continues, what the soldiers once recognized as what it was defending, it now sees as the intruder. Hashimoto’s Disease is a perfect example. At one point my antibodies were so off the charts my Doc was surprised I wasn’t in a coma. My immune system will continue to destroy the healthy tissue till my thyroid is completely unfunctional. I’ve been on synthroid, a hormone replacement, since age 25; 20 years, and like so many others, will take it the rest of my life. EBV is, by some, believed to be the culprit, as some say it resembles thyroid molecules, so that’s where it likes to hide. This is only a theory.

I really recommend learning about the soldiers that make up our immune system and how it functions. I do believe in the power of intentions and gratitude, and for a long time I was angry with my body for betraying me. Especially since I always took care of it. I started using language like, my faulty immune system, or like I said, body betrayal. The fact of the matter is that neither one of those things are true. In fact my B cells, T cells and NK (natural killer) cells are doing their job just fine. It’s the intruders that need to go, which brings me to my final thoughts, for today. I happened to stumble across an interesting article about phase two of a clinical study involving the use of an antiviral drug to treat herpesviridae as a course of treatment for Fibromyalgia. I haven’t read the entire thing yet but I will tell you that before seeing this article I had already planned on asking my doctor to do an extended antiviral treatment for me, at my next visit. Not sure if she’ll go for it, but it’s worth a try to ask. When I saw this article I just heard, ding, ding, ding, and it confirmed that I’m on the right path of problem solving. My flares are very cyclical and occur with any kind of stress trigger, ranging from; lack of sleep, or missing a meal, to emotional sress or something as simple as allergies. Time to kick these not so latent intruders to the curb! I would love to give my immune system a break from working so hard, but they’re always on duty and I do appreciate that. 

There is always hope. Never give up the good and worthy fight. We are stronger together. Keep on keepin on! Onward!

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Rainy Days

Rainy Days

Rainy Days

Our thoughts are powerful, like seeds that grow, and can leave us paralyzed or call us to action. Just as our diet nourishes our body, so to do our thoughts nourish our mind and soul. I have kept a journal most of my life and have found that it’s a great way to monitor what’s going on in my head. It’s important because humans have a funny way of deceiving ourselves. Like the food we put into our body, we surely have a choice of what we think about, and it’s important to differentiate thoughts from feelings, as one does not equal the other. Thoughts are the things that will tell us if our feelings are rational or not. Of course it’s possible to have irrational thoughts but you don’t have to look far before you find a feeling attached to it. Awareness is a gift and a marvelous tool, when you get there, and like the tide, is in perpetual motion.

I hope your day is a good and thoughtful one. 📖✏

#photography #adventurer #nature #philosophy #writing #life #courage #inspiration #dreamlivedo #hope #family #love #lifelessons #weather #rain #abc30insider #Goodmorning #spring #centralvalley #tularecounty #exeterca #autoimmunedisease #hashimotosdisease #fibromyalgia #chronicfatigue #lupus #endometriosis #healing #optimism #hanginthere #selfcare #hiking

Voyager 

Voyager 

​Voyager

We are all voyagers within this flow of spacetime; all with a specific digit of sand grains to our name. Many will travel to distant places, far beyond the boundaries of home. Even more will stay within the confines of what is familiar and seemingly safe. How interesting to realize that whichever path is chosen, the real borders that should be explored, conquered, and expanded, are the ones within our own mind and heart. While many people may know me, there are very few who understand me, and even fewer who will mark the passport to enter my heart.

So, this Voyager may travel alone, but I am not lonely.

This Voyager may travel in darkness, but when faced and traveled through, I know light will always prevail….and this Voyager may see no land in sight, but conviction keeps a steady sail…and home is where my heart is, till the sand grains become the stars.

☄The Crazy Celt 

She

She

​SHE
She lived

She fell

She cracked

She broke

She hurt

She cried

She crawled 

She stopped

She prayed

She surrendered

She burned 

And then……

She rose again.🔥
Every moment is an opportunity to reinvent ourselves. It’s part of the dance of life. Live wisely, live well, but most importantly…

Live.💚

Invisible Me (4) A Poem   ‘I Will Smile as I Leave You’

Invisible Me (4) A Poem   ‘I Will Smile as I Leave You’

Why won’t you take your leave of me

I do not like your company

You hang around me day and night

It matters not how much I fight

Indeed there are times you quiet down

But I know full well you lurk around

There are times I am able to escape from your chains

Yet I’m never truly able to fully regain

My independence, my freedom, like before you existed

I fear that your weight can never be lifted

And so I’ve tried very hard to embrace 

The reality of you in my life and my space

How could something so serious; a tyrant like you

Remain such a mystery, with no answers and few clues

So many times I want to concede and give up

Yet the fire inside me, will never let up

I’m too feisty, too positive, to let you take me down

I’ll face every challenge; adapt and overcome

So, you can walk along side me as long as you like

But you’ll never own me, no matter how hard you strike

I will not wait around while you conjure your plan

I will go on living the best that I can 

I will laugh, and I will love, and I’ll continue to dream

You picked the wrong person, for I like the extreme

And if you are with me till the last breath I take

I will smile as I leave you, just know that is your fate!

💚The Crazy Celt 

Invisible Me (Shadow)

Invisible Me (Shadow)

My looming shadow, so dark with despair 

Creeps up without warning, it’s just not fair

Never enough rest, my fatigue lingers on

Stealing precious time, till the moment I’m gone

I feel like the Tin Man, unbendable and stiff

The pain is unbearable, hang onto hope, a cure, yes, the “what if”    

But for now there is no end to this war inside that I fight

Silent tears I do cry, if you could only understand, my health is my plight 

No one asks for this burden; trust when I say

I fake feeling good, just to make it thru the day

I’ve had enough of shrugs, cock-eyed looks, assuming lies

If you walked in my shoes, you could only despise 

Yourself and your judgement, all tangled in spite

Yet I will never give up, this long lonely fight

Here in the darkness, this shadow clings on

Till I’ve run out of energy, and the moment is gone     

Fading back into sleep, where I dream I can fly

Despite this dark shadow, among the clouds in the sky

Let me dance here forever, there is peace in this rest

I promise to never give up, and always do my best         

Some battles will be won, while many others are lost; “friends”, careers, identity….’who am I? ‘

I am the one with the shadow

Invisible Me 

Standing strong till the end

Right here I will be

Dream, Live, Do and never give up hope.

💚The Crazy Celt 

            

Invisible Illness Awareness Week 

Invisible Illness Awareness Week 

What I want you to know about my journey with invisible illness: I want you to know that I suffer every single day, some more than others. This, for now, has no cure. This is not a cold or flu or bacterial infection that doctors can throw antibiotics at. I won’t magically be “all better” in a week or two. On the contrary, I am always surprised by the next new symptom that manifests. Yes, I suffer and there is no cure, but that doesn’t mean I give up hope. This is why it’s so very important for me to continue to do the things that nurture my soul and hiking, being in nature, photography and writing are the things that do that for me. Invisible Illness has been with me for over half my life and unfortunately, now I’m outnumbered by them, but I still get up and stare them down and fight the good fight every single day. While there was a time I desperately wanted people to understand, or just wanted to remain “normal” and do all the things I normally did, today is not that day. I am too busy caring for my body and mind to worry about anyone else’s ignorance and judgements about me and what I’m dealing with. We all carry burdens, mine just happens to be one that I can never put down. It’s like carrying a heavy backpack and never being able to take it off to rest. So if I am grumpy or extra sensitive, please do forgive me, but if you choose to judge me, that’s on you, because even the smallest amount of knowledge you might choose to understand, is like taking a pebble or stone from my pack…even if it’s only for a moment, and that would be just grand.
#InvisibleIllness #hashimotosdisease #fibromyalgia #chronicfatigue #autoimmunedisease #lupus #adventurer #mountainhiking #photography #writing #inspiration #dreamlivedo #courage #hope