Category Archives: GCA

Should I Be Making More of an Effort?

Is it just me… or do you find yourself purposefully avoiding social interactions?

Since November (or the “Apocalypse,” as I like to call it) I’ve noticed that I dodge more and more social exchanges, especially those that are “face to face.”

In the beginning, I honestly didn’t have the energy or the strength to socialise.  I was totally drained physically, mentally and emotionally.  It seemed every day I developed a whole new appreciation of what the term “feeling like shit” actually felt like.

There were flu-like symptoms, aches and pains, extreme fatigue, sore and inflamed muscles, insomnia. OH, and that God awful, never-ending, paralysing HEADACHE!  What was up with that?

The exhaustion was crippling.  I could have “Slept for England!”  Although, I didn’t sleep at night, mind you!  Oh no… I was a “Day Sleeper!”  I was down when I should have been up, and up when I should have been down.

However, here I am, 108 days (2592 hours) later, into this Senior Tweak Out from hell… and I think I may just be feeling a smidgen more mellow than I was, way back when.

Not much mind you!!!  …but a smidgen.

Slowly tapering the steroids, from 80 mg, to 75 mg, to 70 mg…  down now to 55 mg, has provided just enough time and space, for some of my “rough” edges to melt away.

{“What was that?”  Oh, it’s just the quick, jerking movement of my husband’s head shaking vehemently, back and forth… }

So as of late, I no longer feel as though I’m hanging onto “Dear Life,” with these weak, dry, brittle, fingernails!  The jittery, restless, edgy (and not edgy in a good way) feeble, old woman… is feeling more hope than dread these days.

Where there was once angst, there is now a cautious calmness.  The perpetual feeling of being antsy, has been replaced with a casual nonchalance.

So the question stands… should I be making more of an effort?

You see, I have become very comfortable and quite content, being alone, in the house,  sitting on the couch, in my bathrobe, drinking buckets of tea, writing self-indulgent blog posts, perusing the website and (get this!) working on a quirky art project (more on that later!)

I’m not at all inclined to initiate a lunch or coffee date with friends.  I don’t reach out and call people, who I used to talk to regularly.  I have a “pile” of unanswered correspondence that needs to be addressed, and I must admit I don’t even look at my phone when it rings. *she says red faced* 

I’ve become a recluse.  Let’s say it together…  “H o w a r d   H u g h e s”

Soooo, I can’t help but ask, is this acceptable behaviour for an otherwise healthy, used-to-be-social, 63 year old, extraverted, woman with what is now a old, boring, mundane illness?

Right after the Apocalypse, began, in November, I saw the following on Facebook:

To protect my energy it’s ok to cancel a commitment.

To protect my energy it’s okay to take a day off.

To protect my energy it’s okay to not answer that call.

To protect my energy it’s okay to not share myself.

To protect my energy it’s okay to do nothing.

To protect my energy it’s okay to be alone.

To protect my energy it’s okay to speak up.

To protect my energy it’s okay to move on.

To protect my energy it’s okay to let go.

To protect my energy it’s okay to change.

To protect my energy it’s okay to say NO.

Believe me when I tell you, this became my mantra.  I was not going to do ANYTHING I did not feel like doing.  If the gods had seen fit to strike me down, in the prime of my life *ahem* with a horrible, unfair, chronic illness; then by golly, it was now going to be all about me!

And fair enough!

Except now… I’m not 100% sure my motives are as pure.

Is it really about my energy, or is it about my big, old, fat, moon face?  Am I protecting my inner child, or am I hiding these dry, cracked, bleeding stumps, that some people might call hands?  Am I shielding my fragile, healing soul, or concealing my newly developed “roid gut.”

I can only imagine that you’re as horrified reading these questions, as I am embarrassed, asking them!  …but ask I must!

Have I been fooling myself (and YOU) all along?  Have I bamboozled all of us into believing that I have even the slightest modicum of depth? Integrity?  Authenticity?   Insight?

Or am I (as it would now seem) the most shallow, narcissistic, vain, shell of an old, pathetic women; who’s actually been avoiding social contact because she has not come to grips with the physical transformation her diseases have given rise to?

WTF?  Are you kidding me?

Well.. this weighty topic, obviously requires more analysis, so we will all just have to be fucking patient, while I try and figure this shit out!



She May Be a Monster, but She’s My Monster

me an GCA

Image by Vorja Sánchez

I haven’t felt like “me” since the November 13th, 2017.

That was the last day I actually remember feeling well, healthy; when I last felt normal.  Oh, I’ve had some good days since then, don’t get me wrong… but since that fateful day, things for me have felt a bit like the “Twilight Zone.” 

Being on high doses of steroids is a double-edged sword!  When you take them, you have to contend with wicked side effects.  If you don’t take them, you have to withstand the  crippling symptoms of your illness.

It’s Hobson’s choice really.

Just for context, I have only been on as little as 45 mg per day (and I thought I would die!) and on as much as 80 mg per day (and I thought I would die!), since November.

Once you start taking corticosteroids you’re hooked.  You’re pretty much a junkie, except I doubt that the high is comparable.  And once you start, you can’t just stop!  If you want to get off them, you need to put an elaborate “taper down” plan in place and execute it very slowly, over a period of time.  And even then, you’re probably going to experience some level of “cold turkey,” withdrawal.

Also, and this is not a well-known medical fact, but true nonetheless, once you start taking high dose steroids you spawn your very own, internal lusus naturae!  It’s like this “mini me,” monster thingy, that spontaneously grows inside of you.  And with whom you quickly develop a unique, and peculiar, love/hate relationship!

For me, she kind of just appeared one day out of nowhere.  I saw her, streaking through the house, out of the corner of my eye.  Wide eyed and frantic, darting from room to room.

I soon became aware that she had somehow seized a pretty good-sized chunk of what had previously been ME… my being.  My essence!

She had somehow replaced odd bits and pieces of what had been ME (for the past 63 years!) with odd bits and pieces of HER!

She is similar to me, but in a much more exaggerated, paranoid kind of way.  She’s familiar, yet strange. Friendly, but distant.  I have this odd sense that she and I have met before, but maybe that’s just déjà vu?

I get the distinct impression, she’s here for to stay… at least for a while.

From the beginning she’s been, shall we say… invasive.  I fall asleep, she wakes me up at 2:00 am, wanting to play.  I try to string a simple sentence together and she projects distracting, random images, inside my heard, making me lose my train of thought.  She has an insatiable appetite and all she ever wants to do is EAT!  When she’s not eating, she’s bitching about being “exhausted,”  “fatigued,” “tired!” (Well. don’t get us up at 2:00am, I scream!)  She has this maddening habit of distorting things… up becomes down, right becomes wrong, now becomes later, and nothing?  Nothing always becomes SOMETHING!

However, even with all the chaos and upheaval she’s brought into my life…  she has become my constant.  My one unwavering friend. She is always here.  Always watching. Always waiting in the wings.  She never tires of my company.

She can be a bit judgemental and occasionally admonishes me, but it’s for my own good, I’m sure.  She prevents me from being overly optimistic and gives me a more realistic and pragmatic perspective of things.

One enormous positive she’s brought with her (and has willingly shared with me) is a shaman-like inspiration and sense of creativity.  I’ve always envied people who were able to get in touch with their creative side, as I’ve never been able to even see mine!

Until now…. until she arrived.

You see, the problem is, I am an analyst by nature.  An Analyst is defined as an {annoying} person who studies the elements of something, often breaking it down into smaller {more tedious} parts {that nobody really cares about} to learn how the parts work together and what the nature is of the thing being studied.  (And yes, it is as boring as it sounds!)

Whereas a creative!  A creative is defined as a {magical} person with a never-ending, intense {burning} desire to produce {create, imagine, invent} based on originality {ingenuity} of thought, expression, etc.

Wow, right?  Night and day.

Well…  I truly believe that I have (and it definitely has something to do with her) begun a magical transformation to an opposite, parallel universe!  A place where I (boring, ordinary, analytical, project manager ME!) am more imaginative and artsy, avant-garde and inspired, original and do I dare say relevant?

Un-freakin-believable, right?

However… this presents me with a  bit of a Catch-22, a quandary, a riddle, wrapped inside a burrito!

She’s a cyclone!  An unwanted, dangerous disturbance.  She brings with her destruction and anarchy!

She obviously can’t stay…  but I’m not quite sure I want her to go.

I find myself in a charmed, but hazardous, love/hate relationship with a wide-eyed, unpredictable, steroid fueled monster, who seems rather intent on taking over my very existence!

Yes, sure, okay…  in exchange, she may continue to bestow upon me this magical, intoxicating, outflow of originality and creativity, but at what cost? 

No she has got to go!! 


On the other hand… as she’s already here and she seems so very much at home and comfortable, what’s the harm, really?

I’m sure, as long as I  keep her away from say bright lights, and I don’t get her wet and perhaps if I don’t feed her after midnight… what could possibly go wrong?


She may be a monster, but she’s my monster.




In Sickness and in Health

happy wedding.jpg

… yeah sure, but now this shit’s gettin real!

God knows I’ve bitched enough about how these two autoimmune diseases have impacted me, me, me, but there’s another player in the game, isn’t there?

Nineteen years ago, when my now husband (who, by the way is 10 years younger than me!) asked me to marry him, I said “No.”  Why?  Well, primarily because we were so inherently different! …but also because I was sure he would change his mind and want children of his own, one day and that just wasn’t happening.

I set the differences aside and he somehow managed to convince me that he definitely would not want children of his own; and I believed our biggest, potential issue was solved.

Ha! Little did I realise, that the ensuing years would shine a bright light on some other (perhaps not as significant) differences;  i.e. our taste in music (Come on… how can you NOT like Bob Dylan?), the importance and impact of the Vietnam war on our social consciences (He was too young to eat his dinner glued to the CBS Evening News with Walter Cronkite), the significance (or in my opinion the triviality of) the sounds of the Second British Invasion (The Pretenders? Gary Newman? Squeeze? The Buggles? The Alan Parson’s Project?). Sure, these were annoying, but as I said insignificant.

However, even though we have identified a lot of “differences” between us in the past 21 years… it’s been 18 years of  *Ahem* wedded bliss, so I guess we might be okay.

…with the exception of a teeny, tiny wedding vow.

During a Florida Civil Service wedding, the Notary say’s something like; “Blah, blah, blah… to be my husband/wife, blah, blah, blah, to have and to hold from this day forward, in sickness and in health, blah, blah, blah.”

I’m sure our wedding vows were pretty standard.  The only thing I distinctly remember refusing to say was the bit about my promising to “obey,” because that would have been just an outright lie! (and the ceremony would have to have been stopped, because we both would have been laughing so hard!)  …but we did sincerely make all the other vows.

I should stop here and clarify… before you go jumping to conclusions;  my husband is totally fine with the vows.  He has no problem with the “in sickness and in health” promise.

Even now, even though he is mentally, emotionally and to some extent physically shackled to me and my chronic illnesses from Satan’s anus; he is unruffled, nonchalant and unflappable!

For the past 100 days , he has been nothing, but gracious and kind, patient and understanding, loving and sweet. (Damn him… isn’t that just like him!!!)  But that’s his MO. What did I expect?  He is after all, Nick… Nick White.  (In my head, I hear this in a  deep, sexy, alluring, Daniel Craig as James Bond kind of voice).

No, it’s me… I’m the one whose freakin out!

I’m the one who can’t believe 19 years ago, I was worried about babies… (a decision which he never, ever regretted, by the way!) and it was me who questioned his limited musical taste and level of social consciousness!  It was also me who never considered that my being 10 years older than him, could be a problem for us!

What was I thinking?

How could I not foresee that down the road, I” might be our biggest hurdle to overcome?  I totally missed that I could and probably would (just because I’m 10 years older than him) get sick and throw the poor, sweet, unsuspecting  guy under the bus…  leaving him stuck dealing with an old, sick, miserable, decrepit, woman!!!

It was like a train coming straight at me, but I never saw it!

I guess it was because I “felt” like I was the younger one.  I arguably looked younger, acted younger, behaved younger…  I think I actually believed I was younger!!!!

But alas… just look where we are now.  The worst has happened! I have literally (and almost over night) morphed into that sick, miserable, decrepit, weak, frail, old woman!


I cannot express to you how much I despise being dependent on anyone, for anything, i.e.  asking for assistance, relying on other people, being vulnerable, needing someone, and accepting help.  Sure, nobody likes it, but I truly (with every fiber of my being) HATE IT! It makes me crazy!

And yes, I recognise that this is a problem.  I see myself go to great lengths to not accept help, not need anyone, not rely on others… to the point where I do this thing (that my Mom used to call “cutting off my nose to spite my face”) where I doggedly reject help or assistance, making any undertaking or situation much more difficult and sometimes  impossible.

Yes, before you even ask; of course I’ve been royally screwed over by a man!  A few of them actually.

So when I reached my late 20s early 30s, I swore to myself that I would become totally  independent and self-sufficient.  I worked hard and made damn sure I could take care of my girls and myself without any outside help or assistance, from anyone.  I didn’t need a man for anything.  I worked hard and built a tall, thick, strong, impenetrable wall and by God that wall has protected me and my girls ever since!

That was until Nick White, somehow managed to weasel his way into my black heart.  Over the past 20+ years he has worked at deconstructing that wall, brick, by antiquated brick. Damn him!  He has been committed, steadfast and true… just as his Father told me he would be, so many years ago.

He has been dedicated to me and my girls and despite his rather strong “disdain” for children, he has accepted and given love, kindness and wisdom to my daughters and to our three grandsons!

What’s his reward?

Here’s the kicker…  the poor, unlucky bastard finds himself stuck in an intolerable situation, with ME, day in and day out!  Not the fun, crazy, exciting, young at heart, spontaneous me.  Ohhhhh, no, he’s stuck with the new “ME.”  The cynical, cranky, old, tired, sick, negative “bi-yatch” on wheels, ME!

Never… never ever… did I want this to happen!  I would rather die first (ex: cutting of nose to spite face!)  Seriously, I would go gently into that good night rather than have my husband have to deal with this shit!  Call it vanity, call it ego, chalk it up to my immaturity or my deep-rooted insecurities.  I don’t care what you call it… it was NEVER supposed to go down like this.

I’m the CAREGIVER.  I’m the one with the innate maternal instincts. It’s me who enjoys and is so fucking good at managing other people’s illnesses and in many cases their subsequent death!  How did I end up in the bed?

Well…  screw this!

Right here, right now, I set this wrong, right. For his sake and for my sanity, I hereby make a public decree; I go on record as saying that, “I set him free!”  He is set free from this archaic wedding vow, free from all of them, if he wishes!  He is hereby released from this living hell and free to “move about the cabin” of life without me as the ever heavy (and getting heavier every day) albatross around his neck.

Run Nick White…  run far and run fast, while you still can!  Get as far away from this Hell on earth, as you possibly can.  Save yourself! Don’t look back! Don’t be like Lot’s wife… just get out while there is still life left in you!

… but as you run, know I will miss you and please also know…. you got closer than anyone else ever did.

Demons and Self Doubt

I was actually taken back, as I read the words that I had subconsciously typed.  One by one, each word appeared on the screen and I read…

I don’ think I can do this?” 

It was last week when I read about a woman who has struggled with PMR for 4.5 years and had reduced her Prednisolone to 2.5 mg daily (just for context, I’m reduced to 65 mg daily!).  After reading her story, I felt like I had been kicked in the teeth!

She was, understandably, feeling down and discouraged because she continues, after 4.5 years, to be plagued, by relentless, unyielding, debilitating fatigue.  In her own words;  “It feels like my gas tank is running on empty.” 

My first thoughts were, “Wow, I can relate to this…  I know about this crippling, perpetual, exhaustion!”  And it was actually kind of cool, that here was someone else I could relate to;  a kindred spirit, a compadre, a virtual friend who felt what I felt.

Then, I panicked.  And from there I started to “freak out!”

I realised, “Hey, wait, I am only 90+ days into this nightmare!  She’s been dealing with this for… WAIT, what?  How long did she say?  Did she say 4.5 years?  WTF!  Nooooo!  No way… I can’t deal with this shit, for another 3 or 4 years! 

Seriously!  I don’t think I can do this!

Yeah, yeah, this is where you get to call me a Drama Queen, you get to call “bullshit” on me, you can snigger at what you think is my clever use of theatrics to try to write a more interesting story…  I truly wish it were any one of those!

But really…  I honestly do not know if I am strong enough, brave enough, tough enough,  or if I have the fortitude to live like this for several years!  

Did that word register with you?  I said, “years!”

I’m already dangerously close to my “sell by date.”  In 3 to 4 years, if I’m not literally “expired,” I’ll be past my sell by date.  By the time I start to feel better and have worked my way though theses shitty autoimmune diseases, I’ll be on the wrong side of 67/68, with most likely an abundance of other “elderly” health related issues and quite possibly on my way out anyway!

So what now?  I just accept this living hell for the next 2, 3 or 4 years…  Only to get through to the other side and expire anyway, like a freaking  quart of milk?

I wish I had the words (and the writing skills) to express just how paralysing and disabling these destructive diseases are.  The continuous pain and the infinite and total exhaustion have to be inconceivable to someone who has not experienced it.

Imagine, for a moment, you.  You’re thinking about completing one of the ordinary, mundane tasks that you might do on any given day;  change the sheets, vacuum the floor, walk to the market, clean the bathroom, whatever.

Choose one.

Now picture yourself, completing that task.  Notice that it has taken you twice as long to complete the task, because you’re breathless, you feel stiff and your arms and shoulders are refusing to do what you  tell them to.

Now, feel yourself, very suddenly (as if someone has hit you over the head with a ton of bricks) consumed by an overwhelming feeling of utter and complete tiredness and a total  lack of energy.  

This isn’t any old tired… you are ready to drop, tired.  Shattered, totally drained, knackered to the point that you MUST sit down or you will fall down.

You get to the couch and you collapse.

Maybe 45 minutes later, you realise you’ve just been sitting there;  totally zoned out, staring at a lamp!  You don’t  know where the time went;  you feel kind of numb and a little confused;  and you realise that’s it.  That’s you for the day.  You are spent, cooked, done.

Let that sink in…  All you have done, is change the fucking sheets!

You’ve changed those sheets a million time.  You’ve done it without even being conscious of what you were doing.  You’ve done it and moved onto five other chores without giving that particular task, a second a second thought, but not today.

Today, changing the sheets has beat you.

Changing the sheets has kicked your ass.

Changing the sheets has crushed you.

Sure, it may get better.

Maybe you’ll get to the point where you can do one or two chores a day before you crash and burn.  Maybe you’ll go out for lunch with a friend; then it’ll be home for a nap.  On a good day, maybe you’ll take the long walk to the grocery store;  you’ll do the shopping, carry it home and make a nice dinner…  but,  you’ll most likely pay for it by spending the entire evening “recuperating” on the couch.

The agonising and undeniable truth here is that your life (MY LIFE!) has been irreparably changed, forever.

Things will never be as they were.

The best case scenario?  Maybe I come out of this tailspin somewhat easily, with only minimal scars.  Maybe the diseases settle down in 2-3 years and the symptoms subside;  I’m able to get down to a tolerable dose of .5 or 1 mg a day; the side effects, of which, are minimal.  I’ll be plagued by few if any “flares” and the pain and total lack of energy will be manageable.  Maybe, I’m no longer a total loser sitting on the couch twiddling my thumbs, staring at lamps.  Perhaps, I am once again a productive member of society!

From my mouth to God’s ears.

Between now and then…  Yes, yes, I know, “there are a lot of people out there who are way worse of than me.”  Yes, I get that I’m being a being “overly dramatic and a BIG BABY about this.”  Obviously,  “bitching and moaning is unbecoming and not at all attractive in any way!”  “People hate whiners!”  I understand this “is not the end of the world” and I should just “shut the hell up and suck it up.”

Yup, got it.

However….  as Evinda Lepins said:

“Complaining is truly my strongest weakness.”

The Ultimate Betrayal


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.


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! 


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


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 >>>

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.


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.


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! 



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.