Tag Archives: auto-immune

Grief, “Pay me now, or pay me later.”

I’ve endured my share of loss; that’s not unusual, since I’ve been on this earth for 63 years. I have lost grandparents, parents, aunts, uncles, cousins, good friends, ex-lovers, and perhaps the most painful of all, both of my siblings.

I’ve always allowed myself, no, forced myself to be in touch with my emotions and to feel these losses deeply and genuinely.  I’m not embarrassed by raw, gut wrenching emotion, never have been.

So… I assumed from a young age, that I had this “grieving” thing under control.

Beginning with the loss of my grandparents, I allowed myself to publicly cry, feel the loss fully, openly express my outrage with God and then went about the business of moving through the stages of grief and loss, as well as a 12-13 year old can.

Some losses I accepted more easily than others.

The loss of my Mom for instance; I readily accepted and was grateful when the end finally came.  Lung cancer that metastasises to the brain, three times… is not nice. I was okay with her moving on.  I had grieved the loss of her, months before it actually happened and other than the normal feelings of loss and separation, any young woman would feel when she losses her Mother, I came out of that experience surprisingly unscathed.  The most prominent, lingering feeling was (and to this day is ) a never-ending loneliness.

When Dad died, that hit me a lot harder.  Unlike Mom’s death, I had no time to prepare.  I got a call and he was gone.  There were no last words, no goodbyes, no time to show or say how much I really loved him.

He just no longer existed.

That loss hung on for a while… it took its toll on me and impacted me on a deep emotional level.  I had regrets and things I had always thought I would be able to make right.

They say time heals all and in time I accepted the fact that Dad died the way he wanted; quickly, hopefully painlessly, by himself under a beautiful blue sky, with the sun shining down on him, while he pottered around the  garden.

I concluded that people died and I was just one of the lucky ones who was able to cope with that harsh reality.

Hahahahahaha!

Then, there was my brother Charlie.  He turned yellow and was dead 9 months later.  “Pancreatic cancer,”  enough said.

I took care of him, spoke to the specialists on his behalf, acted as his primary medical advocate and proxy, stayed with him when he was in the hospital, talked to him about what he wanted “when” the time came…  I did what all good Project Managers do, I managed his terminal illness.  I was with him when he died, helped make the funeral arrangements and thought I was “dealing” with his death pretty damn well.

Imagine my confusion, when months had passed and I couldn’t seem to shake the feelings of depression, anger and resentment.

I was experiencing weekly panic/anxiety attacks, people at work were complaining I was aggressive and belligerent, I was smoking cigarettes, drinking a helluva lot of wine and I didn’t give a damn what anybody said or thought about my behaviour.

When my husband voiced his opinion I jumped down his throat, lit a cigarette, poured a huge glass of wine and effectively tuned him out.

I experienced regular headaches, frequent mystery viruses, aches and pains, used a lot of sick time, and spent many days just lying on the couch feeling like shit.

This went on for well over a year!

I was totally consumed with Charlie, with his life, with his death, his illness;  I found no joy in my own life, no comfort in my family and obviously no solace in being consumed with his death.  It was a dead-end and I was trapped.

I finally got help, but it took years to get through to the other side.  I was told I was suffering from “complex grief.

I had become “sick” because I had not dealt with my grief.  I had successfully managed Charlie’s illness and subsequent death, but never dealt with my own feeling of loss, grief and abandonment.

Skip forward 9 years…

When I left for Boston, at the end of February 2017, I never thought that trip would end with me standing in front of an urn that held my brother Tommy’s ashes.

Originally, I feared he might be suffering from alcohol induced dementia.  Or lung cancer that had finally metastasized to his brain.  Maybe it was CTE, from all those blows to the head…  but I had never, ever considered he would DIE!

The planned, two-week trip, lasted  9 weeks!  What began as my best effort to “manage” and help “sort out” his health issues, ended with me having to make incredibly difficult end of life decisions, on his behalf;  “No, do not admit him to ICU.”  “No, do not put him on ventilator.”  “No, do not administer antibiotics.”  “Please just give him oxygen and morphine and keep him comfortable.”

My brother had decided it was time to die and like it or not, I had to respect that decision.

Again… I believed, under the impossible circumstances I had been given;  I had stepped up and effectively handled a totally inconceivable situation

Back in the UK by early April,  spring and summer found me consumed with wedding preparations.  My youngest daughter’s wedding, in early August, still had a ton of unmanaged tasks.  I threw myself into that like “tie-dye on a hippie!”  I allowed myself to be fully and wholly consumed with the undone tasks and endless minutiae.

The wedding came and went… I remember it as the perfect day, but I’m not sure if what I remember are actual memories or the mental images of what I had so meticulously planned and masterminded for all those months.  It’s all a bit of a blur, if I’m truthful.

August, September and October saw me thankfully back at work and at the hospice helping terminally ill people cross over.  I had also joined the Chaplaincy Team and spent many hours visiting and talking with some phenomenal people.

Then… out of nowhere, Monday, November 13th, found me on my knees.  A blinding headache that had been in the background for 19 days was officially diagnosed as not one, but two debilitating autoimmune diseases.

“History repeats itself because no one was listening the first time.” ~ Anonymous

Have I really gone and done it again?   Have I allowed history to repeat itself, because I wasn’t listening the first time!!!  WTF?

With a lot of time to sit around contemplating my wellbeing (or should I say my “lack” of well-being) I have had this epiphany!

“I manage “grief/loss” situations flawlessly, but I forget to internalize  and deal with the emotional by-products.”  

I subconsciously allow them to fester and froth inside me like the noxious liquid, in a witches cauldron; and then… at the perfect, most inconvenient moment, it all bubbles over, drowning me under a strange and mysterious illness!

It’s my own unresolved grief making me sick! 

It’s not God’s will.

It’s not the environment.

It’s not my lack of exercise or poor eating habits.

It’s not bad luck.

It’s my physical body, screaming, trying to draw my attention to the emotional and mental pollutants being created and left behind by my very own GRIEF!

Talk about the perfect explanation of an autoimmune disease!

Okay… Okay…  I get it!

I submit.

I promise I’ve learned the lesson this time.

Grief just smiles and walks away…  I hear him whisper to himself, in the distance… “Until we meet again, my friend.  Until we meet again.” 

 

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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

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.