Fragility

It doesn’t take much to knock over the domino’s. One tiny little wrong move and all the tiles are knocked over and all that hard work down the drain. Broken, fragile, despair, hopeless…

I’ve been cursed. Hexed. A little voodoo doll being poked all over, one thing after another over and over while they wait for me to break… completely… done… over… the end. Whisk me away to far away lands… I’m broken and there may be no fixing me. No help, no end in sight, drowning in my daydreams that will likely never take place, an escape, a delusion, an illusion…

I am done. I am just done. How many more times can I be kicked while I’m already down? I’m done already. Just that last breath. I’m done. They won, I don’t care, what is left? There’s not much left, a tiny little breath within that is just waiting for it’s last. The world is too much for me and there is no justice, no fairness, no logic, no village… no money to get me where I need to be, no escape, no rest, no…

The Invisible Dead

Invisible rapid tears cascading down

leaving trails of glistening carnage within

The smile no longer masking upon my face

Dead eyes staring out, life, I can’t win

As I’m crippled with inaction that I can’t surpass

Time speeding by, never a free pass..

The world ends all around me, or so it seems…

When it’s my own life that stopped, some distant dreams.

Do I fade away, away in the night?

Or do I end the suffering, remove my light?

Back and forth my mind does toil

Why can’t I live? All attempts, I soil..

Emotionally numb,

Stuck in a rut

Continuing on

All for what?

THAT Call….

Waiting for the shoe to drop

Waiting for my life to stop

That moment when the call drops

I’ve tried everything, it flops.

Everything I do

It’s always been for you

There is no me, who?

Your heart is mine, too.

Backed up against a wall

Waiting for the fall

Can’t take much at all

Waiting for that call.

Everyone be flexing

I’m over here, stop hexing

People live their lives texting

It’s all about the sexting

I just want to save you

But you have a different view

I’m stuck not knowing what to do

I know you can feel it too.

Backed up against a wall

Waiting for the fall

Can’t take much at all

Waiting for that call.

Waiting for that phone to ring

Leaving me with all your bling

To everyone, it’s not a thing

But to me it’s my biggest sting

You started from a little seed

To all grown up, smoking weed

So much difficulty just to feed

I only wish that I could lead

But in the end, we all bleed…

My heart, my soul, I wish I could fix it all..

DM 3/7/23 (10min)

Ain’t No Time For That! Mental Spiral

My broken brain decides to choose the absolute worst time to melt down. Is there ever a good time though? When deadlines are looming and paperwork is piling and no one else can take the task seems like a good time as any, right?

So I FINALLY got approved for 3 hours of week home help to help with tasks I’m having difficulty with. Vacuuming, changing my sheets, washing my bathtub, meal prep. Only took several years of asking and a call to my politician to get them to finally sign me up for a service I qualify for. SMH. At least that will take the pressure off a tiny bit. What I really need is an administrative assistant to organize my life and help with the paperwork and keeping on task. Maybe that could be included in my hours, not really quite sure. I know the lady doing my qualifications was shocked with a household of 5 people, I have no one to help me. I have a disabled teen, a 12 year old that does more than anyone else, a husband that works all the time and is tired and a mother that spends her time hiding in the basement and really only comes out to ask what’s for dinner. I’m broken.

And now as deadlines are looming and my teen is transitioning to adulthood and piles of paperwork come in for his disability, ssi, home supports, services, VA dependency, health insurance dependency, and suddenly my daughter wanting to homeschool and the loads of work involved with that, not to mention the stacks of all the other tasks undone, waiting for completion or even simply looked at and the pile grows and grows and grows. I’m drowning. No time to spiral! No time to check out and take care of myself. No help. Just simply, ain’t no time for that….

The Edge of Darkness

Living day to day, I struggle just to breath.

Trying to keep my calm. Praying for a long reprieve.

Balancing on the edge, each moment that I take.

Stomping down moments of regret, trying to avoid another mistake.

End it now or keep pressing on, decisions never far from thought.

Wishing for a peaceful existence, no demands or responsibilities fought.

For my shattered mind, so fragile, worn thin, how did I get to this place?

Always so strong, so determined, now weakness, an utter disgrace.

Body broken, weighed down, crippled in chronic pain.

Pushing myself, the frustration, no endurance, pushed in vain.

Questioning my existence, anger, fear, and doubt.

Stuck in a hole with no exit, surrounded by a withering drought.

The end so close, I feel it near. Do I reach out and grasp it’s hand?

Even the thought of that decision is simply too heavy a demand.

I think of their faces, my heart and soul, the pain that would never heal.

Do I put that burden upon them? A pain I never want them to feel.

But is my life worth keeping? A weight dragging everyone down.

Unable to care for myself, all the tasks piling up and I drown.

No one here to pass the torch to, everyone looking for me to depend on.

How can they even think it’s realistic, blinded by who I once was, she’s gone.

My hubby, exhausted, I see the burn out taking it’s toll.

He refuses to acknowledge, yet it seeps from his very soul.

My heart breaking in a million pieces, I feel helpless to my core.

Dreaming of winning the lottery, hire help, hire so much more.

Life’s journey, roads traveled, didn’t turn out as I’d expect.

How much damage one’s health can do, lacking services and respect.

No one chooses to be ill, dreams shattered and washed away.

Passions abandoned and unfinished, life in a state of decay.

Never quite enough to qualify for getting my needs met.

Like a dangled carrot above me, while being judged, but don’t fret.

Is it worth hanging on, listening to others scorn?

Sitting in their high castles, while my soul does nothing but mourn?

Cut them out from my existence, not worth the extra stress.

Neither willing to lend a hand, while I continue to regress.

Sitting in judgement seats while my body rots away.

And you wonder why I cut you out, a game I simply won’t play.

Every little bit of stress adds another layer deep.

Breaking down my body even faster while I weep.

My life now down to few, the only ones that matter.

Do I continue to hold on, do I give in to the madhatter?

Like a prophesy once told, left a simple talking head.

But even talking exhausts me, maybe better off if dead.

Dianne MacKay 6/24/2022

Missing The Whole Picture…Words and Facts

When I was a kid growing up, in school we were taught to gather all of the information before forming an opinion. Gather the facts. What do we know? What information is missing? Today’s world seems to be missing this very essential step in the process before rushing to judgement and adding their own 2 cents. I truly believe the internet, social media and our own media has amplified this problem.

We used to have investigational journalism. I miss those days. Now it feels like everything is a big joke, entertainment takes priority, truth is hidden and lies are glorified. This seems to have a ripple effect touching the lives of everyone in one way or another as those around us begin taking up those same bad traits and jumping into the fray forming opinions as if fact and making accusations as if truth. What a sad world we live in.

Maybe attending college for conflict resolution has given me an edge on being aware of two sides to every situation. How our experiences shape our views and how group think can alter the atmosphere. Taking our time to reach conclusions and not rushing to judgement while keeping a rational mind is paramount. But too many can twist facts (I honestly think the definition of ‘facts’ has changed like a few other definitions have of late) to fit their own narrative, what they choose to believe and what helps fuel their own desire for drama as their only way to lash out at the world. Maybe looking inward with some deep reflection and honesty can help open the eyes to people’s own hypocrisy. Maybe not.

Cause deep down, there’s a lot of disgruntled people out there and some simply need a target. A target to take their own frustrations, fears and insecurities out on. Rather than being a rational mind, they’ve allowed fear to corrupt them and while our societal media highlights the drama, rash judgements and harsh criticisms that only seem to want to keep fueling the fire and widening the divide which digs itself deeper into the mind of the people who seemingly look for the easy target, the scapegoat, to latch onto and vent their own anger and insecurities at. They failed to gather the facts.

Another thing I’ve learned in life is to never use the ego when involved in an argument or disagreement with another. This is another thing that has seemingly gotten worse over time. The name calling, the harsh and ugly words against another. Do you honestly think that will do you any favors? If you’ve stooped to that level, you’ve lost the argument. You can catch more flies with honey than you can with vinegar. Calling someone a vulgar or derogatory name isn’t going to win them over and certainly doesn’t help the situation. It only highlights the deep seated anger, insecurity and aggression bubbling under the surface.

Some people are born to be a part of the drama. Some only come out when the stress gets too much. Others just want to simply live in peace watching the events unfold around them, shaking their heads knowing our world is just going up in smoke. Gather the facts people. Don’t be so quick to judge. And be absolutely sure of your information before rushing to that judgement especially if you feel the need to jump in the fray and blast a person on social media. Words spoken can’t be taken back. Can people change? Absolutely but people aren’t quick to forget as social media has shown us. These days a comment made 10 years ago can come back and bite you. Doesn’t matter the relevancy, the situation, anything that can fuel the fire and add some drama can be thrown up at you decades down the road. Words matter.

They use to say, ‘Sticks and stones may break my bones but words will never hurt me.’ That’s a lie. Words do hurt and they do matter. I don’t agree with going back 10 years just to use something against someone. That’s not who I am nor think it’s acceptable. As I said, people change. But words in the here and now, they matter. They create deep divides and shut down the walls and lose whatever trust may have been available. Words can hurt more than sticks and stones. They can divide a family up and widen the gap and close doors that wouldn’t have otherwise. So think carefully before you use your words. Gather the facts. Don’t rush to judgement. And don’t blast someone on social media with accusations that can’t be taken back…

22 Years…. 22 Years

                                        22 Years… 22 Years…

22 years I suffered

22 years I cried

22 years I asked for help

Instead, I was pushed aside.

All I wanted was answers

Why was this happening to me?

My entire life flipped upside down

And few opened their eyes to see.

They spent their time full of gossip

Whispering behind my back

Telling each other I was faking

Overly dramatic hypochondriac.

The toxic poison slipped from their lips

Touching those listening ears

Twisting others minds against me

Being wrongly judged by family and peers.

The medical system was no help

They never looked outside the norm

It’s impossible you have something rare

It’s all in your head, now please conform!

It further perpetuated the stigma

Leaving me feeling insecure

Something is definitely not right inside

But it’s not my mind, I was sure!

My body feeling weaker

Losing strength day by day

Pain increasing in my legs

Forgetting what I want to say

My entire life is not the same

Dreams gone up in smoke

My goals, my hobbies, my career

Swallowed by this invisible cloak

Then one day, a simple test

One beyond the norm

Results came in, abnormal

My mind in shocking form

I have not one but two

Rare conditions that were found

It finally all makes sense

My theories were all sound.

Vindication for all those years of hell

I simply told you so

But you refused to listen or even care

How do you feel now that you know?

Do you feel the shame, the guilt inside

The pain for what you’ve said?

Or will you simply ignore the elephant in the room

Refusing to acknowledge what you led.

Will the doctors now take special care

And truly listen to what I feel?

They can no longer blame my anxious mind

This rare condition is very real.

Swimming in emotions

Shock, fear, and awe

Making new life adjustments

Due to that partial genetic flaw

My life more fragile than I even thought

Every system can be affected

Prognosis unknown weighing my thoughts

This one truly was unexpected

Have I robbed my children of their lives as well?

Praying they won’t end up like me.

Lots of upcoming tests, more answers

I guess I’ll just wait and see.

The pain of those fears running deep

My thoughts heavily weighed down.

The emotions from 22 years released

Holding tight, so I don’t drown.

The relief I feel

that the gene can’t pass on

Takes 2 for that

And I only have one…

Just another oddity,

My life’s become.

I’m not supposed to be affected..

But what’s done is done.

                                                                      Dianne MacKay 4/14/2022

The Years Go By… Rare Disease

                                        The Years Go By…..

I see a doctor,

I’m in pain

You look fine

Let’s try again

They run some tests

The labs look good

You’re in perfect health

But I don’t feel as I should

Can we look some more?

Somethings not right.

It’s probably just anxiety.

And thus begins my fight.

My mind is fine

It’s my body that’s broke

You made up your mind

Before I even spoke

There’s plenty of tests

That have never been run

You ran basic labs

Assumed nothing else can be done

So off I’m sent

Specialists galore

Once again basic labs

Not much to explore

You’ve checked off the norm

But I don’t fit in a box

See mental health

You’ll heal with those talks

Mental health said see Neuro

I’ve been there before

Pushed back in the box

Then shoved out the door

No one will listen

Somethings not right

It’s slowly progressive

I’m losing this fight

You’ve had ‘extensive tests’

And which would that be?

Only basic panels

No in-depth testing for me.

There’s mito, myopathy

And dystrophy

You don’t present like the norm

What norm? Can’t you see?

Adult onset is different

It’s misunderstood

You assume we should fit

We would if we could.

The literature’s outdated

The training is slim

No time to read studies

Let’s just blame them.

The kid showing signs

The same as me

It’s all in my head?

How can that be?

There are so many tests

Yet to be done

I’ve asked many times

You think this is fun?

This is my life

It’s falling apart

You see mere moments

But not from the start.

I use to keep my house

Everything in order

Now it’s collecting dust

Feeling like a hoarder

I had meals on the table

The neighborhood mom

Now I struggle to stay upright

I’m losing my calm

I don’t build endurance

My muscles fatigue quick

Weakness is present

My body feels sick

My kidneys leak protein

My gut won’t absorb fats

Tachycardia is present

Low blood pressure my stats.

My stomach shows bleeding

Esophagus gets stuck

Small bowels with rare findings

Now sort through this muck!

I want answers for my health

I should have that right

This is the life that I live

This should not be a fight

Appointments take months

Just to be seen

Some specialist’s years out

The wait in between

The process is slow

It does no good

Healthcare’s messed up

It’s not as it should

Where are the centers?

For a comprehensive exam

With doctors of all specialties

Rare disorders their plan

Don’t judge a book by its cover

They say

Yet you’re doing just that

And I’m left to pay

I’m angry, I’m hurting

My life up in smoke

Disabled and broken

Pulled down by this yoke

I feel the progression

Slowly take hold

My limbs will lock up

If I’m feeling cold

Repetition paralysis

Also exists

There’s testing for that

I will insist!

Scoliosis, kyphosis,

A pelvic tilt

Can’t support my posture

My body will wilt.

Migraines, brain lesions

Double vision as well

This is my nightmare

I’m living in hell

Early onset cataracs

Bad vision at night

Super dry eyes

Surgery I might

Scaring in the lungs

Mitral valve prolapse

Shakey jelly legs

Ready to collapse

Chronic high cholesterol

Yet no weight on my frame

Plaque calcified in my arteries

That’s for the old, they claim

Bone inflammation,

Stress reactions they say

3 years in a wheelchair

For that I did pay.

One step from a fracture

Bilateral too

Explain that to me!

What should I do?

This is not normal

It all adds up

Where are the answers?

It’s filled my cup!

Hypermobile as well

Let me show you my tricks

My kid’s knee will dislocate

It’s not a simple fix

My list is long,

Some you’ve never heard

Knowledge is lacking

Training has not occurred

Myalgic encephalomyelitis

Can you pronounce that?

Dysautonomia as well

Your experience falls flat.

Epstein barr reactivated

My immune system shot

Low C3, still exploring

But Lupus it’s NOT.

Abnormal gait

My skeleton misaligned

Some bone abnormalities

Organ differences you’ll find

Occasional burst veins

Petechial spots on my skin

Inflammatory bowel disease

I just can’t win!

Numb leg for a year

Sunburn feel on my back

Stabbing toe pain

I wish that one, I lacked!

Bowel spasms that drop me

My bladder too

My esophagus joins that list

What do I do?

Fasciculations and spacisity

Muscle spasms and pain

Internal tremors for years

Yet they can’t explain?!

Hiatal hernia repair

My gallbladder out

Multiple cysts, necrotic appendix

What’s next? I shout

Let’s see, there’s the uterus, that’s gone,

rectocele times two

Interstitial cystitis,

Neurogenic too

Anemia, iron deficiency

Low sodium, low potassium

Low ALP, low CK, low BUN,

No answers, I’ve asked for them!

Low anion gap, low ferritin,

Low vitamin D

My numbers look beautiful

Nothing to see.

My labs were all normal

My CT too

Yet full of IBD

And you never knew

I told you I’m a zebra

I don’t present in the norm

No inflammation in my blood

Based on basic panels, your form.

There are other lab markers that exists

But you’re not in the know

Don’t blame my mind for your ignorance

healthcare is a shit show.

Send me to specialists

Who know rare disease

22 years I’ve been waiting

I’m really displeased

Takes 15 years on average

For those like me

To finally get answers

It’s a simple plea

Our system is broken

Too much time lost on blame

Their ignorance is speaking

When they play their basic game.

You don’t fit in their box

It must be your mind

Without truly looking

There’s nothing to find

How do you fight a system

When your crippled and done

The fatigue is daunting

Sensory overload won

Words coming out backwards

Your memory lacking

Assisted devices for everything

Once sharp now cracking

Brain fog is strong,

Simple things now hard

Held down by this body

My freedom is barred.

If not for me,

Then for my kids sake

What is going on?

This is not fake!

She’s taking advantage of the system

Hypochondria is strong!

She just wants pain meds

How badly they’re wrong.

Somatic symptom disorder

You’re thinking on it too much

It affects me nearly every moment

I’m pained by simple touch!

She’s simply an anxious mind

But it’s only here I get spun

All the gaslighting, accusations

PTSD is no fun!

I’ve been accused of so much

Your judgements off base

I’d love to see your response

If you suffered what I face!

But wait! There’s more! Should I go on?

Nystagmus, ataxia,

vertigo too

Thank God that’s less frequent.

Oh, emphysema! But that’s on you!

Endometriosis, Menorrhagia,

Bilateral labral tears

Gastritis, Bile duct dilation,

Severe abdominal pain in flares

Constant pain in my hips

Endless in my butt and thighs

Hurts to stand, to walk, or sit

What causes this pain to arise?

It’s too rare to exist,

The doctor does boast!

No, it’s not as rare as you think,

Just simply rarely diagnosed

                                                                                Dianne MacKay 4/2/22

To those who suffer from rare disease.

I read your posts, I hear your plea’s.

Political Medicine

I’ve always known we had issues with our medical system. Over specialization (lacking the ability to see the whole picture), lack of updating current data and going off of antiquated literature, inability to think ‘outside the box’ for those of us that don’t fit in them, and lack of advocacy for those suffering chronic conditions. Bias still exists in the medical field. Patients have had to advocate for themselves, educate their own doctors on conditions misunderstood or conditions most medical professionals are simply unaware of.

But I never expected that we would simply change our medical system to political medicine. Never did I expect that government, big corporations, and a portion of society would accept this change at the expense of the vulnerable and those fighting for body autonomy. Never did I expect so many to go along with it, unquestioned and spew so much hate towards those that know a medical system of ‘the greater good’ would be harmful to apply across the board and be harmful to those of us who are vulnerable.

I’m thankful there are still some good doctors and medical professionals who are standing up for body autonomy as we are not a one size fits all society. It is not possible to be without causing harm to a portion of the population.

Where do we draw the line?  We fight hard enough to be heard by uneducated doctors and society who have no idea of the health conditions that exists among us who have no understanding of the day to day of what we go through and we expect the government and big corporations and society in general can suddenly make those decisions in our best interest? And to stand up for our own bodies, health, and situations is now suddenly ‘harmful’ and ‘unethical’? How did something right become wrong so quickly?

Just Eat The Cookie and Die

It’s amazing to me how many people are willing to sacrifice others for a false sense of security, to make them feel safe. It’s even more amazing when it comes from someone in your own family who has had the time to know your life, your experience, your health issues, your story, and yet they still want you to eat the cookie that could potentially kill you, just to make them feel safe.

The cookie in question would be a cookie that you have a known allergy to, as well as a prior history of eating that cookie and having your health destroyed. Knowing there are many others like myself who have also eaten that cookie and had the same reaction and struggling just to live life with the myriad of conditions and health issues spurned by those damn cookies.

Those cookies destroyed my health. When trying to find out why, no one seemed to care. What makes my genes different? What made people like me respond in the way in which we did? There’s an obvious genetic component involved but no one wants to study the issue. Why? I can only assume, since the manufactures have no real liability, they have no real incentive to research the issue. Studies costs money. There are many many willing participants who’d love to be involved to see what makes us different so we can enjoy a safe cookie like everyone else but we’re the minority and I’ve since learned, we really don’t matter. No one wants to spend the money and they likely don’t want to admit that their cookies can cause that kind of harm in the first place.

For two decades, I’ve brought up these questions. I’ve asked medical personnel. I’ve been silenced, gaslit, and told correlation doesn’t equal causation… Let’s think about that last statement. Correlation doesn’t equal causation. Wow, can that apply to many things but in my cookie case, it almost always seems to apply. We know that only a small number of people have their injuries reported in the first place. This is fact. Even drug reactions are rarely reported, I’ve witnessed that many time. If these reactions are not being reported as they’re supposed to, then we don’t have a legitimate accurate database where we can see how many people had the exact same reaction and how that reaction grew over time. We miss the obvious, that many have had that same response and correlation is looking much more common than otherwise reported. Seeing those numbers would then, ethically prompt more research into the issue. Just like a black box warning applied to meds that were later deemed unsafe for a subset of the population. But cookie injury reporting is one of the least of all reported types of injuries. Again, is it the lack of liability? Why wouldn’t we want a safe alternative for those who can’t digest it?

In becoming injured by those infamous cookies, health declining and disabled, I have become the vulnerable. The vulnerable who can no longer eat of those cookies. It would be harmful to my health and since we don’t know what the mechanism is behind it, we have to assume it’s the entire cookie. Had they researched the issue, maybe we could have pinpointed something in it or understood the way in which my body processes those cookies but again, no one cared enough to investigate the issue. In addition, current cookies now contain an ingredient that I do have a known allergy to. And sadly, I was told by my own family member that I should eat it anyway. Aren’t they the ones who are supposed to eat the cookies to protect me? The ones who can’t? That’s the line we’ve been fed for generations yet that somehow suddenly doesn’t apply? Or is my family member just being toxic and selfish willing to sacrifice another for the impression of saving himself? That’s what catering to the ‘greater good’ does to people. It’s always at the expense of another and I just so found out, I am the other they’re willing to sacrifice. Doesn’t look good on this side of the fence.