Category Archives: GCA

The Ultimate Betrayal

We-stopped-looking-for-monsters-under-our-bed-whe

I cannot imagine any human betrayal as excruciating as a self-betrayal.

Imagine… your body, unbeknownst to you, makes an arbitrary decision to start producing antibodies, that will attack its own (YOUR OWN) tissue!  This attack will ultimately lead to the deterioration and in some cases to the total destruction of such tissue.

Wait… What?  Why would my body want to do that to me?  Aren’t we in this together?  Aren’t we a team?

Well, guess again…  because that is the hideous nature of an auto-immune disease/disorder.

It’s you, stabbing yourself in back, selling yourself out, double-crossing yourself.  Gives a whole new meaning to the phrase, “Go f**k yourself.”  

An auto-immune disease/disorder develops when your immune system, which normally defends your body against disease, decides that your healthy cells are foreign. As a result, your immune system then attacks the healthy cells.

Nice.

The ultimate betrayal.

You’d think this was a rare occurrence, right?  I mean only a freak of nature could have it’s own body decide to turn against itself, no?

Well, according to the American Autoimmune Related Diseases Association (AARDA) there are approximately 50 million Americans (20 percent of the population or one in five people) who suffer from auto-immune diseases.  Women are more likely than men to be affected; some estimates say that 75 percent of those affected, some 30 million people, are women! 

Ladies… What the hell are we doing to ourselves?  Or, maybe a better question is what the hell are we not doing for ourselves, that we should be doing? 

There’s a lot of speculation out there as to exactly what’s causing these deviant auto-immune diseases/disorders, but I don’t think a conclusive verdict is in.  The frontrunner, proposed triggers include:  

  • 1. Gluten
  • 2. Gluten-free grains
  • 3. Quinoa
  • 4. *Stress
  • 5. Toxins
  • 6. Sugar
  • 7. Chocolate
  • 8. Dairy
  • 9. Nightshades
  • 10. Small Intestinal Bacterial Overgrowth (SIBO)
  • 11. Weakened Microbiome (our highly sophisticated gut ecosystem)
  • 12. Leaky gut syndrome

*Unfortunately, not only does stress cause disease, but the disease itself  also causes  significant stress in the patients, creating a vicious cycle.  {Stress as a trigger}

Truth be told, I think there may be more possible causes, than there are auto-immune diseases/disorders! 

So, we (women) are a competitive lot, huh?  Just look at us competing with the men for all of the historically “male,” causes of death.  According to the CDC, the Leading Causes of Death (LCOD) in females, in the United States are as follows: 

…and now, it looks like we’re leading the pack in the unwanted acquisition of these complex and monstrous auto-immune diseases/disorders too. 

I don’t have any answers.  

In fact, I have unwittingly betrayed myself…  I have not one, but two auto-immune diseases that are kicking my ass! 

I’m embarrassed and hesitant to admit it, but this is the hardest “shit” I have had to deal with, EVER in my entire life.  And that includes dealing with the long term illness and subsequent  death of loved ones, dealing with having a child diagnosed with cancer, heartbreak, divorce, miscarriage, and marriages to assholes, you name it I experienced it! 

THIS IS WORSE.  

It feels like I’m in battle; I’m fighting for control of my body, my mind, my very being. The problem is, I’m in a battle against myself. 

How do I even fight this fight?

the_monster_in_me_by_autumnends Illustration by Anita Kolsen

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Metamorphosis

Why yes, this is in fact an actual photograph of me holding onto what is left of my youth, my good health, and apparently a false sense of dignity.

The origins of the word metamorphosis are tied to the Greek word for transformation.  Transformation, is defined as a process by which one figure, expression, or function is converted into another one of similar value.  

I still remember stumbling across that first abyss, which turned out to be my first  metamorphosis;  losing the innocent and free-spirited essence of that young, prepubescent being.  Semi-realising that from a particular point on, I would be forever changed; knowing I was to be redefined, re-labeled and judged in my success (or failure) as a female, a woman, a sexual creature, a partner, or even mother!    

The changes that were thrust upon me way back then were much more abrupt and hideous than the ever constant, more subtle changes I have experienced in the last decade.

Back then, there were bumps and curves, pimples and strange monthly occurrences that sent my young, naive, free-spirited self into hiding forever!

A similar, but much different life force, emerged on the other side of that chasm;  she was quite peculiar, self-conscious, uncomfortable in her own skin, and wholly embarrassed by her very existence!

It took a long time for me to come to grips with that transformation and to shake off the grief and feelings of loss I had for that innocent lost in the process…

I found the whole experience, nothing short of heartbreaking. 

Years later, having reluctantly settled into my new, more womanly aura… I unexpectedly discovered it was time to transform once again.  This time, the evolution transformed me from a young, self-confident, vibrant, sexual creature into someone more gentle, mature, loving, giving and maternal.

Becoming a Mother was one of the most phenomenal sea changes EVER!

My entire existence took a full 180º and everything that I thought I believed about myself, about life and about unconditional love came under profound scrutiny and had to be  reconsidered, re-examined, re-defined and re-evaluated.

I found the whole experience, nothing short of miraculous. 

However, with the day-to-day drudgery of life, work, routine, boredom and sameness…  I  soon settled into this transmutation and it too became rote.

Years passed. I became numb, stagnant and seemingly unaltered.

Then, slowly, indistinctly, almost overlooked by me a new and quite insidious transformation began to take place; MENOPAUSE.  The biological clock stop, climacteric, the change of life.

This mutation of me was long and arduous.  It took its toll on me over many years.  It didn’t help that I was experiencing complex grief after having lost my brother. That just exacerbated the entire, relentless process.

As I teetered on the edge of this vortex, I could actually feel myself slipping away;  my youth, my vibrancy, my essence…  it oozed out slowly from each and every pore of my being into the dry, dead earth.

I found the whole experience, nothing short of hell.  

Ahhh, but alas, as all things do… this too passed.

I made tentative peace with the fact that I was ageing, I accepted the benefits in realising there would be no more children and I tried to see the humour in the fact that my body parts had acquired “minds” of their own and that “Yes,” even my spectacular breasts, were in fact subject to the laws of nature!

Reaching my 60s wasn’t as bad as I thought it would be.  I didn’t feel  particularly old, I didn’t think I looked particularly old and I didn’t have any of those pesky illnesses that  sometimes pop up when you’re in your late 50s or early 60s.

Things were okay… I felt like I was in control and cruising into my “golden years.”  

I would surely die before I got really old or god forbid sickly, right?  (See previous thoughts on my “best laid plans” to grow old gracefully >>> https://wp.me/p4O3T4-1Gn

Well, we are now a little more than 3 years on and as my Mom used to say,  “…the best laid plans of mice and men.” 

It’s a bit sad, somewhat scary and surprisingly liberating to write this next sentence…

“I truly believe I am standing on the threshold of what will be my final metamorphosis.”

I foresee three messy, overlapping, intertwined stages;

Old age.

Ill health.

Death.

The void I stand before now is, in and of itself, quite unique as I know I will eventually transition through to another place/level/state/consciousness… but I have absolutely no idea to where I will transition or what I will transition as (if anything);  but it is, to be sure, my final transformation.

Having recently lost the last surviving member of my original childhood family, along with turning 63 and being diagnosed with, not one, but two auto immune diseases that are quite literally kicking my ass, I think about old age, ill-health and death a lot!

I can no longer pretend that I will be unaffected from the ravages of time or that I, simply because I have willed it to be so, will be spared old age and ill-health and die gently and easily in the middle of the night.

Nope.

It’s far more probable that I too will have to navigate this black hole of uncertainly, deal with my frailties and accept the indignities of my own humanness.

Am I ready?  No

Am I scared?  Yes.

Can I do this?  Absolutely.

Why?   … because I believe this experience will be nothing short of mind-blowing! 

#bringiton

 

What the f**k is “GCA?”

I always had visions of myself as a timeless, ageless woman, who would grow old effortlessly and gracefully.  You know the type; the woman who glides into old age with neither a care nor a worry.

I envisioned my older, confident self as fairly attractive, healthy, and on the enlightened side; a more mature version of my younger, “truer” self.

Almost unnoticeable to the outside world, I would move smoothly through the decades, seemingly untouched by the ravages of time… and then, I’d die.

Easy peasy. No muss, no fuss. Gone. Done. Over.

That was the plan.

I never considered or even begun to prepare for a long and/or arduous ageing process. And for some reason the thought of dealing with any type of debilitating illness was, well… quite frankly, inconceivable! 

Ahhh, but the gods, they do love to interrupt our silly, fanciful, mortal “plans” don’t they?  With a nod of the head, or blink of an eye, our cleverly, crafted schemes are so very easily thwarted.

In the last month, I have seen my perfect “vision” of growing old gracefully (and healthy)  crushed like a tiny, insignificant, bug!  I think I may have actually heard the unnerving “splat,” as the maceration took place!

In an instant the visions of me, as a “goddesslike” creature, slipping away gracefully into the gentle arms of old age and eventually death, were exterminated.

Instead, it appears that I may very well be, perilously, skidding (head first) into that noxious mixture of fire and brimstone, that so many people find “is” their experience of old age and poor health.

Seriously, “WHAT THE F**K?”  …does nobody have any respect for a finely tuned, well thought out plan?

Monday, November 13th started out like any other day… I worked a 7:00 to  3:00 shift (on the Bristol Ward) at the Royal Sussex County Hospital. It was busy and somewhat stressful, but really just a normal day.

I realised, as I took my seat on the bus, that I had a raging headache.

“Hmmm? stress,” I thought.

As the Number 7 bus plugged along Western Road, I became more and more aware of this excruciating pain in my head and an overwhelming feeling of exhaustion.

No matter, the day was done, I was on my way home and relief was in sight… or so I thought.

No sooner had I arrived home, I hit the couch and passed out.  I awoke, about and hour and a half later; in a dark, quiet room, disoriented and still in pain.

I will spare you the boring, twisted details of the events that followed, because really it was just more of the same  (wake up, headache, lay down, fall asleep, wake up, headache, lay down, fall asleep, repeat), but just to be clear, the exhaustion and excruciating daily headaches have now returned each day for exactly 29 days!

There have been 4 trips to the GP;  who has sent me, not once, but twice to A&E, where I sat for more than a total of 15 hours. The first time I was told it was a migraine and given Paracetamol.  The second time, a week later, they took a bit more interest!

The exact diagnoses is still not 100% definitive, but “they”  (the powers that be) are leaning towards a diagnoses of something called Giant Cell Artiritis. (Not to be confused with arthritis, which is a disorder that affects joints.)  

“What the hell is GCA,” I hear you say?

My thoughts exactly.

Giant cell arteritis is defined as an auto-immune condition in which medium and large arteries, usually in the head and neck, become inflamed. (Remember when “inflammation” became a thing?)  It’s sometimes called “temporal arteritis,”  because the arteries around the temples are usually affected, creating the feeling that someone’s put your “head in a vice grip.”

{Ohhhh, what was that?   Oh, just my dreams of growing old gracefully, flying out the freakin window!}

Basically, inflammation of these blood vessels causes the main symptom, headache.  Swelling also causes narrowing of the blood vessels, which, in turn, results in diminished blood flow into the brain, eyes, ears, etc.  Sounds good so far! Count me in!

The ONLY treatment seems to be long term, “high dose” steroids; and unfortunately, if you decide not to treat, you risk almost certain blindness and a possible stroke.

Sooooo, not a lot of choices really.

This disease is not curable, but is treatable; it usually lasts between 2-5 years and the steroids are administered throughout; although they continually try to taper you down, to lower and lower dosages, until you’re eventually off.  That’s the goal anyway.

Do you know anything about steroids?  Not the kind the body builders use to get  pumped and buff,  but the legal and more common, corticosteroids?   I didn’t either, so let’s take a look at some of the more common side effects, shall we….

What was that about growing old gracefully, you ask?  Ahhhh, yes, “gliding into old age with neither a care nor a worry.”

It would seem, that is not going to be my path.

I have been on 60 mg of Prednisolone a day, for 9 days.  No bearded lady gig offers yet!

The headache has (for the most part) subsided).  The exhaustion and lethargy have not.  I am able to do a few chores around the house, take a shower, eat lunch and that’s pretty much me for the day.

The couch and I seem to have melded together in an indistinguishable mass of purple leather, arms, legs, pillows and blankets.

I will see a Rheumatologist (“Oh my God do I actually have a Rheumatologist now?”) on Tuesday and hopefully she will help me piece together the shards of shit that life seems to be hurling at me.

Sooo, I  shall leave you here, hanging on the edge of your seat…  or, more probably, “NOT.”   Perhaps you too are as bored and disinterested in all of this as I am.

For now… you need to know one thing.  Please know that if I have not returned a phone call, a Facebook Message, or an email;  if I’ve cancelled a planned dinner, lunch or coffee date…  if I have been rude or dismissive of you in any way… please know that it’s not you, it’s me.  I’m not purposely trying to be an jerk,  it’s just that there are circumstances far beyond my control and I must devote all my time and attention ME. 

Watch this space.