Euthanasia

I recently read an article from Canada about a 20 year old male suffering from an unknown disease that is debilitatingly painful to him. He’s seeking euthanasia, legally allowed in Canada. This article hit close to home. I’ve heard that request before. I’ve heard it from my own son. I can empathize and relate to what that young man is feeling and I can only imagine the pain his parents, if present is his life, must be going through. Our medical system is failing so many of us and way too many are suffering from undiagnosed diseased, often dismissed when too complicated of a case for doctors to deal with.

Growing up, I use to think if you had a health issue, you simply went to the doctor to get it ‘fixed.’ I later learned, even using the word ‘fixed’ was an irritation to doctors. They sent me to the shrink. How was I to know that the medical system couldn’t ‘fix’ people? They simply cover up symptoms for most disorders and only have a basic knowledge in common conditions. They’re great for emergency care but not so much for complex health issues. I wasn’t shocked to read that on average it can take 10 to 20 years for many people to get a diagnosis for a rare disease. Some never do. After experiencing my own failures with the system and suffering 22 years, I know the frustration patients suffer. I know that many doctors will simply pass the buck, sending you to someone else when they can’t give an easy answer and that buck can keep on going till they simply label you with mental health and neglect the patient.

We use to treat patients with chronic pain, counting pain as an important issue to ones quality of life but somewhere along the way, the pendulum swung too far in the wrong direction and now too many are left with no medicine to treat their pain. Too many are left with a dosage inadequate to give a person some quality of life and the ability to function. When a person is suffering, all options should be on the table. Quality over quantity and addiction be damned. FYI, the real percentage of addiction from prescription medications is quite low, less than 3% but somewhere along the way, those numbers got overinflated and anti-opioid zealots led the charge, damaging the reputation of a good medication that’s given so many a quality of life worth living. That’s an article in and of itself. I’m left wondering if the poor kid in Canada is being left to suffer over ‘fear of addiction’ leading him to make that choice to end his life. How did we come to this? Suicide rates skyrocketed when the CDC ‘guidelines’ came out and patients were pushed out of pain management, dropped from being able to take a medication that gave them the ability to function. Drug overdoses increased as some patients took to the streets in sheer agony over untreated pain. Suffering from severe chronic pain myself, I can’t blame them. What life is there if it’s nothing but suffering?

I think of my own son’s pleas to let him go. My goal to get him to adulthood in hopes of buying time to find the answer to what he suffers and in hopes of finding a treatment that can give him some kind of quality of life. But our system is broken. Months to years waits to see a doctor to get passed off to another and the wait starting all over again. To trial a drug that causes issues and no relief only to wait months longer to do it all again. This isn’t the life my son wants to live. He hates the medical system and I can’t blame him. I hate it too. It’s failed us on so many levels. Next month, he’ll be an adult…

I have spent 2 decades trying to figure out my own health issues. TWO DECADES. The last seven years being disabled and trying to do anything while disabled is like trying to swim through quicksand covered in mosquito’s with flashing lights and a million sounds pounding in your head all at once. Focus! With the progress in DNA and the ability to purchase access to our own genomes, I have spent years pouring through everything I can in hopes of getting put in the right direction in my search. With the cost of whole genome testing finally being within reach, I was able to get testing done on me and my kids at the same time I finally, after all these years, got accepted into genetics. So while I wait in hopes of insurance approval for whole exome sequencing, I’ve already purchased and received me and the kids genomes. I’ve had to learn as much as I can on my own. I found the pathogenic variant for my own disease my blood showed signs of. It was confirmed by the doctors but it’s likely not THE disease that causing my neuromuscular disorder and that of my kids. So I keep searching.

I thought for sure what my kids are battling is coming from me since we have the same symptoms. Imagine my shock when I finally found a pathogenic gene for a disease which my DNA does not contain. My kids are battling something else. Now the fear of finding out if they are also battling another disease, the one in which I’m dealing with. Likely one of my kids will have both as our muscle symptoms mirror each other. They already have several of the same conditions I do but to have a debilitating disease on top of what we’re already dealing with, my mind is blown. I’m shot. I’m buried in the quicksand that’s dragging me under and suffocating me. Fortunately, I found a free program to confirm the gene I found in my kids so we don’t have to wait for the doctors to finally get them in. They have 1 year left of their 2 year wait to be seen. Of course with this new information, I’m waiting to see if they’ll expedite it like they did mine when I found my own disease. Thinking about what I’m writing, that shows you our healthcare in a nutshell when the patient is left to investigate on their own. To figure everything out without the direction or guidance of a knowledgeable doctor because we’re lacking those. They rather label you with a mental health diagnosis and send you on your way.

What a broken system. I dream of winning the lottery so I can erase the debt that drowning us and finally be able to provide the support and care we need. To be able to fix our home so we can live in a space that’s upkept and geared towards our needs. To be able to know I can provide for my children who will need that support. I feel so broken. How can I provide for their needs when I’m struggling to provide for my own? How can I financially support them as adults as when we’re barely making ends me now? Social security will never allow them to live on their own or even cover a fraction of their expenses. My life insurance would help. The thoughts that swim through my mind as I worry over our futures. Will my son choose euthanasia? Will we ever find a treatment that actually works? Will he ever have a quality of life worth living for? I’m here for my children. They are what keep me here. I can’t imagine living like this for another 20 years. My son looks at me and tells me that he only sees me getting worse, never better so why would he want to stick around and wait for his own life to crumble even more? He sees me struggle with pain, migraines so bad I rock back and forth and can’t even make it to the ER for treatment, the pain is too bad. The dizziness that keeps me reclined in my chair all day long. The pay back after a rare good day when I do what I can when I can but can never keep up while I continue to drown in the loads of paperwork and to do’s on my to do list. How do we survive? Is it worth surviving?

Who is there to even talk to about this? No one who doesn’t live in our shoes or in similar shoes can ever understand where we’re coming from, what we’re feeling. You can not even imagine the place we are at or what we go through. How can one give advice when they are blinded by their own experiences and have no experience or understanding of the daily struggle? It’s certainly broadened my own compassion and empathy for others who suffer with debilitating diseases. All options should be on the table for us. We need so many better programs and services for those in our shoes. Services the VA advertises but never offers or qualifies you even though technically, we should qualify. The rules stacked against us. It’s not as simple as people think. Would you ask a nonverbal autistic kid to tell a class a story? No? Why not? That’s like what those of us disabled are asked to do when trying to navigate a broken system and fill out piles of paperwork over and over and over again with no help or assistance while suffering from a broken brain, overwhelmed by the amount of paperwork, the pain of using your hands/wrists to write so much. The mental exhaustion just from thinking about it. Simply thinking about it, so burnt out that your brain shuts down and you just can’t. Sometimes I feel like it’s meant to be that way to weed us out of the system.

On top of all that, we’re dealing with my son’s small cannabis charge. A charge that shouldn’t even be a charge. His doctor recommended it. It helps him in several ways yet it’s illegal here. He’s not out drinking and driving, committing violence, stealing, causing harm, he’s simply medicating himself with the one of the few things that’s helped him and now they want to punish him for it. He’s autistic and the logic behind it doesn’t make sense to him or to me. I certainly don’t want him on opioids yet. I’d like to keep that as far out as possible due to the stigma and hell we go through just being on a simple drug that helps us function and reduces the pain. The DA wants to give him a few days of jail, 6 months supervised probation with drug testing and 20 hours community service. How is that helping him? He can’t even hold a job or finish school so how is he going to be able to do work in the community? Jail time for taking a medicine? Are they going to provide his medical care? Are they looking to keep him in the system? It’s not as easy as simply moving to a legal state. This isn’t black or white. This is very complex with multiple needs including caring for a family member dying of cancer. I also can’t just give up my own doctors who are at least treating me regardless of feeling like I’m undertreated, I can’t just up and move in this climate and expect to receive the same care elsewhere. I wish cannabis worked for me like it works for my son, but it just doesn’t and I don’t like the feeling like I did back when I was young.

On top of that, we’re fighting with our HOA who agreed to release us from the HOA by getting the subdivision the ability to vote on the issue and suddenly, they backpaddled saying they never agreed to that even though I have the emails stating they did. My contact with the HOA is no longer there so now they’re pulling this on me and suddenly requiring the prior fees, thousands of dollars, that were waived previously and now they suddenly say we owe the bill. I have to find an attorney to deal with this issue but when am I to find the time or the money when my kids and our health takes up every single waking moment and I have no real help with any of it. It just keeps piling on and piling on and suddenly euthanasia is looking appealing. But I can’t leave my kids. But I’m not much help to them either, or at least it feels that way.

People like to judge while sitting on their high horse but from where I’m reclining, all I see are bitter people without compassion and understanding who complain but offer nothing. No, we’re not a typical normal family. We’re disabled by rare disease and that impacts every bit of our lives. What might work for you, won’t work for us. I’m tired of people trying to fit a square peg into a round hole. It doesn’t fit and no amount of moving it around will fix that. Maybe it wouldn’t be as bad if just one of us were disabled. But we didn’t get that straw! We got all the short straws. I use to have it all and I appreciated that life. Now I’m struggling to hold on. I’d take it all if my kids didn’t suffer but I didn’t get that life. And yes, I ask, why me? Why us? But I can’t change anything. It is what it is but it’s hard to make lemonade when you hear your kids crying in pain.

Invisible Disability

Truly one of the hardest disabilities is one that is invisible. On the outside, we look, ‘fine.’ But on the inside, we’re anything but. It shouldn’t make a difference but unfortunately in our society, it very much does. People judge and that judgement includes doctors, ER staff, family and friends. They don’t see the pain. They don’t see the fatigue. They don’t see the disorientation and dizziness. We look….. normal.

I’ve sadly fantasized about missing a limb in my moments of frustration thinking if maybe they actually SAW a disability, then they would finally understand or treat me with respect and not make assumptions or judge wrongly. It’s also brought a deeper insight and understanding into those who cut. Not that I’d ever cut but I can see it as a way to show the world the pain and turmoil hidden inside when the world ignores your pleas and minimizes your feelings.

Our world is not kind to the disabled. I have a family member who once told me during a migraine that she could ‘finally see’ that I do suffer… That she needed to ‘SEE’ my pain to believe me. Most of us hide our pain. We don’t want to walk funny, look different, or spend our day moaning and making noises for the world to hear. It’s not like acute pain. We learn to adjust and push through it but that does not mean it isn’t disabling or not extreme. We just had to adapt regardless. No one can see the heavy weighted invisible sandbags clinging to each limb. I can describe it all day long but truly unless one experiences it, they wouldn’t understand. It’s extremely difficult to function when gravity acts differently with your body which is another way I like to describe it.

It’s even worse having dysautonomia. Being upright too long triggering migraines, disorientation, pain, shakiness, palpitations and tachycardia. My best position is a slightly reclined position with head support. My muscles simply don’t want to hold my head very well. It kills me knowing one of my children suffer this same thing. My muscles have atrophied along my spine, my butt, and my thighs. It’s hard to come back from that. No matter how hard I try, I won’t build endurance. I can spend all summer lifting a small weight and it will have no improvement in my muscles and cause the same pain and fatigue every time. In fact, it will cause my muscles to progress. What kind of disease is that!?! The catch-22 when you need exercise to improve your muscle function but the disease that causes exercise to worsen it instead. I feel for my children.

Then there’s the Elhers-Danlos. That alone is bad enough but alone is not what Ehlers-danlos does. EDS is systemic and likes to collect it’s own set of other disabilities to join the party. My labs are some of the most bizarre labs I’ve seen. Even the doctors are baffled by them. Truly a Zebra with no desire to be one but that’s my lot in life. I’m fortunate to have a husband who has been by my side over 22 years, supporting me and being my biggest advocate.

No one chooses to be disabled. We need better programs, improvement in insurance and services for those of us who find our lives altered by these diseases. Currently, most policies are set up for those with visible disabilities, again, discriminating against those who remain invisible. Then there’s the issue of government involvement in our healthcare, making medical decisions and guidelines without a license to practice medicine or policies on medicine made by people who don’t even represent the population the medications affect. Patients being denied care, needed medications, correct dosages, having to choose between treating one thing or the other instead of treating them completely. Where is our choice over our own bodies and what we want when we’re the ones having to suffer? Where is the common sense? I’d rather sign a release of liability and take what I need at the dose I need to allow me to fully function than to be undertreated over some unfounded fear that that might cause addiction or maybe even death. Yet the dosages are so low as to not being a realistic concern. But shouldn’t that be my decision to make? After all, I am the one living this life. Quality over quantity.

Yesterday I read an article about a 20 year old male suffering from a disease they can’t figure out that causes him disabling pain. Rather than treat him with pain meds enough to function and have some quality of life, they are offering him euthanasia instead. This is Canada. Euthanize rather than treat. Having a child who’s had those same desires, as well as suffering myself, I can empathize and understand his position but what I can’t understand is how government would rather allow this much suffering rather than allow someone the quality of life they need with medications that DO work or allow the option of euthenasia but not the option of good quality care. This is our world. Where is the outrage about this?

So much outrage over woman’s right to abort but near silence over the abuse of pain patients and the disabled. It truly is a world where people only care if it affects them personally. They’ll turn a blind eye if it doesn’t. Maybe had they fought for our rights when we were seeking help and advocacy warning about the atrocities going on in our country, things wouldn’t be the way they are now. But instead, they were filled with the propaganda by our media, the fear mongering over opioids as if it’s the real cause of our countries overdose crisis and not the illicit street drugs coming off the streets. Yet, the real studies are readily available, the proof is there but the world is blind to it.

I could write an entire book on patient experiences that would boil the blood of anyone who read it if they knew what’s been going on to so many of us in pain. Even those with cancer, crippling disease, major surgeries, so many affected by these biased policies that cause patient harm. Smell some lavender oil after that bowel removal but no opioids for you. When government can offer incentives for hospitals to follow their guidelines and protocols that don’t take patient individuality in account but a blanket policy then we have a real problem. Incentives need to be removed and government needs to get out of medicine and our healthcare. They also need to remove the hypocrisy in regards to cannabis, it’s status under a substance that has NO medical benefit and yet legalized in so many states for the medicinal benefit it actually provides. When it takes legislation and decades to do what’s right, maybe we need to look at our system and fix what’s broken. It shouldn’t be that hard. We’ve lost common sense in our country.

I’m tired. Just truly tired.

Freedom to Move! My First Powerchair!!

On a whim I decided to check out the local LINC liquidation sale. They sell disability supplies and I was curious what the going rate would be for a used powerchair. Ideally, I really need one I can fold and transport in my own vehicle. I’m not quite ready for a new vehicle or modifications to my current one. I love my car. But I know someday soon, it will be time. It’s getting harder and harder to drive very far and I don’t typically drive except to doctors appointments. But, I decided to check it out and I’m glad I did.

They had so many options available. A powered wheelchair style, full powerchair with lift and headrest, regular wheelchairs, and an abundance of other supplies. I already have 2 regular wheelchairs but they do me no good for independence. I can’t push them. My muscle disease causes paralysis and severe fatigue with repetition and pushing a manual wheelchair would not get me far. So I have one but I depend on others to push me and that really takes away from my independence, something I am not ready to totally give up on yet. Plus it’s not fun being knocked into things when they can’t see the leg rests sticking out in front of me. A little frustrating.

Insurance rules are a hinderance to those with invisible disabilities. It’s much easier to get approval for things if you’re missing a limb or are completely dependent. I still have some independence. I can walk in my home. I’m typically in one of two recliners most of the day but I can still walk in my home. I can’t stand long inside or outside and I can’t sit up unsupported for long either. My barrier to caregiver services was for the sole ability of being capable of putting a spoon to my own mouth. Yet, I don’t cook or prep meals often due to the dysautonomia, fatigue and pain. We need a better system for people like me who fall through the cracks and are left without the services needed to help us function.

So as I’m checking out the mobility devices, I found one that meets nearly every single need. It’s comfortable. It’s thin to fit my thin frame. It reclines and it has a headrest. It’s not the fastest one there but it would get me out of my home and allow me to exist in the community without the immediate decline in my status. There’s only one problem. It can’t be transported without a lift. They didn’t really have any travel chairs that could be taken apart or folded and put into the vehicle. There was one I could potentially transport but not without assistance getting in the car and out and it doesn’t recline or provide head support. I fell in love with the blue one that checked off nearly all of my boxes. I do have a travel lift at home but it’s a huge task to utilize so I really had to think on it. The cost of this chair was literally around 5% of what I’d pay in stores. They even offered it to me for free. I gave them some money anyway as they really went out of their way for me, they even transported it to my home. I now own my own powerchair. No insurance hassles. No VA hassles. No long drawn out waits. It is mine.

The taste of freedom if even for a day on a rare occasion, to be able to be out of my home in my reclined position, to be by my kids side, walking the dogs, enjoying the fair, a concert, whatever, it’s liberating and it’s exciting all at the same time. I’m am happy in this moment. I am blessed to be able to obtain this product that so many of us desperately need. I’m thankful to the person who posted it in my local disabilities group. I’m thankful for the great staffing who went out of their way to assist me. Now I just have to figure out the transport issue and I’m golden. Otherwise, out comes my lift and I have to wait for hubby to help with that one but I’m that much closer to having a little more freedom without the intense pain from sitting upright in a standard chair. Or squatting down in public from simply standing. So many take that for granted.

I’m excited today!

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

A Million Dollars… I can dream, right?

I’ve played the lottery so many times, I’ve lost count. Even if I only got 5 in a row for the million dollars, I’d be content. I’ve entered the HGTV dream home as often as I remember as well. Cash option or the house? What a tough decision but if I won it today, I’d choose the house! (I think!). A fresh start in a new state away from the nightmares of the last 7 years that have plagued me. And better medical! Just the idea of living so close to a good medical establishment is enough in and of itself. A place that understands rare disease, doctor’s who could actually give me and my children a treatment plan and care. Sigh…

The dream of simply being debt free. Free to use the money we have to handle our needs without struggling, without juggling, without having to pass up on things we could really use but can’t quite afford. So many things that could make our lives easier when battling disease but just out of reach for us. A main floor master bedroom with an appropriate bathroom, an office, a pool for hot days when our heat sensitivity flares up as simply entering the cool water lifts the heavy fatigue, dizziness and disorientation in a way nothing else can. I was recently told by my home physical therapist that I simply have two appropriate options for physical therapy that would be a benefit for me due to the conditions I suffer. Water therapy and a recumbent stationary bike. Two items I don’t have and to access them is difficult due to the energy it drains from me simply leaving my home, not to mention how driving is becoming an issue and hubby works too much to take me to my appointments.

To imagine being debt free and my husband being able to simple work a part time job to keep him stimulated while being available to the family to help with our medical needs. I dream. The loss of my career aspirations when I become disabled was a devastating blow, having spent over a decade working towards that goal and then having it slip through my fingers. I feel useless being unable to contribute. Even though I have my VA disability, it’s truly not enough to cover our needs. Imagine being debt free and being able to hire the help we desperately need. Someone to help me upkeep my home, change my bedding, clean my shower, tasks I actually once enjoyed as I’m a stress cleaner and neat freak and now unable to do those simple tasks. It saddens me. I miss my yard work, spending time in the garden. So much work I put into our last home when my condition was moderate and not quite so severe. Yet we gave up that home for extended families sake which ended up being one of the worst mistakes we made.

So many regrets. That home was much more fitting for my disabilities and contained all the touches, blood, sweat, and tears that I was able to put into it, doing my passion, a little here, a little there while still able at that time to at least do something I loved. The regret is a heavy burden I carry, unable to put those touches into our current home that isn’t nearly as set up to meet our needs and nothing left in me to give. If I won the lottery, I would hire someone to design the home in the way in which I imagined when I first set eyes upon it. But I’d still move. I’d probably keep it as an investment but just being able to see my ideas spring to life, even if from someone else’s hands, that would satisfy me. But the cold in our state was not something I thought I’d ever have to worry about.

The bitter cold, so crippling to my muscles. It’s cold about 8+ months out of the year here. That’s just over two months to be able to live my life with less pain and more movement before having to start the cycle all over again and stuck to my recliners and left to my writing, my support groups, and my anxiety over the tasks that never get done. I need a warmer climate. But I feel stuck. The money it costs to move to a whole new state, a new life, starting all over again, I just don’t have that kind of money. The thought depresses me as I know having better health care and living in a warmer climate might actually improve my function and abilities and options. I feel stuck.

I truly dream of buying one of those rectangular hot tubs with the hand rails and moving current. That would be the PERFECT way I could actually exercise my muscles so I don’t lose anymore than I already have. I tend to live at the waterpark during the summer, sitting on a tube in the lazy river and moving my legs as much as I can to maintain what’s left of them. But each year it gets more crowded and the tubes get less and less as I wait for an availability and then worry about having too many pushing people around me shoving me in wrong direction and hoping not to get hurt. It’s not the best environment for disabled people.

And my kids. My kids who need access to top specialists due to certain rare conditions that I would not trust just anyone to take care of. They’re my life. The services are extremely limited where I live. Our state is also behind on access to certain medicines legal in over half of our states but not in ours. A medicine that actually provides some relief and benefit and even suggested by my kids doctor as well as my own but yet, it’s not allowed. What is, isn’t enough. So once again, I feel stuck.

If only I had a million dollars. The ability to pay off every one of my debts, fix the house enough to either be sellable or rentable and the money to move to a place more suitable to our needs, our family. The funds that would then be available to hire the help we need, the devices and services we need, and to finally rest. It’s that time. Rest is needed, the ability to pass the torch and be taken care of. I’ve spent my whole life taking care of others but now it’s my time, my turn, to simply rest. I need rest.

Take Me To Death’s Door

Take me to deaths door

There’s no pretending anymore

Pretenses melt away

There may not be another day

As I hold your hand to take you through

The uncertainty, fear, emotions ensue

Scared inside, feeling blue

By your side, I’ll be with you.

The past lies dormant

Like it should

Life’s difficulties and challenges

Forgotten where they stood

These moments, raw

Unfettered truth be told

Compassion and love

My heart does hold

As I hold your hand

Your journey is near

Not alone for your transition

When it may appear

The loss already stinging

My heart filled with pain

To know you’re saying goodbye

To never see you again

Hopes and dreams

Ideas gone awry

Plans dissipate

Loved ones die

Dianne MacKay 3/2022 (I hate Cancer)

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 kids 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 me of 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

The Sacrificial Greater Good

I’ve been hearing the term, ‘The greater good,’ quite a bit lately. Apparently, it has it’s roots in Utilitarianism.

utilitarianism: the doctrine that actions are right if they are useful or for the benefit of a majority; the doctrine that an action is right insofar as it promotes happiness, and that the greatest happiness of the greatest number should be the guiding principle of conduct. (via our lovely google dictionary).

On paper, it seems right. It often shapes our decisions in life and helps us to make decisions that would benefit the most. But what about those who become the sacrifice for this greater good? That is an often, swept under the rug discussion that can quickly turn ugly if not silenced quickly. I’ve had the unpleasant experience of being the sacrifice more than once in my life and it’s opened my eyes to an uglier side of society that has no room to take a true look at what that looks like. Closing their eyes and shutting down so they don’t have to face the harm that their decision could cause. Is it just their way of protecting themselves and their feelings about the matter rather than facing the ugly truths that exist?

I’ve noticed those that are ‘plugged in’ will have the same lines of thought, words of indoctrination (?), using the same style of language and lingo to justify their viewpoint and leaving no room to think outside that box. It’s a split society in those situations that have painted the picture as either black or white, ignoring the gray that sit in front of them as if it doesn’t exist. They will argue vehemently to defend their position and give you absolutely no room to simply discuss the fall out from that line of thinking. Instead of critical thinking and curious discussion, it’s near immediate ego insulting and name bashing against the one who sits outside the box both in thinking and in experience. Their way is the only way and anything else is pure selfishness.

Yet, life is not black or white. There are sacrifices to the greater good and their voices deserve to be heard. After all, isn’t it my sacrifice that keeps you going? Let’s look at WWII. Some of the most horrific and brilliant doctors and scientists committed some the most outrageous atrocities against mankind. On paper, if you asked anyone, most of society would be disgusted by their actions. But when you boil it down to the finer details, you can excuse them by this thinking of the greater good. Did we not learn much from their discoveries? Did our country not then hire some of those same doctors to keep the studies going? But that’s not something most want to think about or are even aware of. The uglier side of things, swept under the rug and justified by the thinking of the greater good. We simply learned so much, right? I wonder how those poor souls felt being forced to give their lives, their comfort, their humility suffering for the sake of others. How many universities, governments, corporations dipped their hands into the pot of human experimentation, ‘for the greater good,’ before laws were formed to stop the overt practice on human life? Just research the topic and you’ll be surprised how common this was. The people experimented on didn’t have a choice in the matter. That’s an ugly truth that simply is.

It’s easy to rationalize and justify thinking that simply wouldn’t happen again, after all, didn’t those laws come into effect? In the 80’s. We’ve evolved from that kind of behavior, right? No. Tigers don’t change their striped, they simply camouflage themselves much better and push the idea of the greater good, dressing it up in a beautiful wrap and calling it something pretty. Critical thinking and open debate began slipping further and further away from the curriculum taught in schools and universities and group think began. A world wide social experiment with deep effects into the minds of the plugged in. The idea of a different viewpoint becoming an anger inducing division of minds and a black and white scenario with no room for individual thought and discussion. It is ‘the collective’ and the divergent.

Those who’ve become the sacrifice, awakening to the injustices that hide beneath the fabric of this collective thinking of the greater good and the finer details that are hidden even deeper within. It truly explains the immediate silencing and ostracizing of those outside the box. The unplugging from the collective.

The Next School Shooter

Several years ago, a mother in my state wrote an anonymous post about her child being the next school shooter. It took a post like that for a doctor in another state to reach out and help her child. Yet no change took place in Idaho. Our mental health system here is a broken wreck, we know it, they know it, but no one is doing anything about it. It’s been years, yet here we are with the same broken system. A young girl, a 6th grader became the next school shooter. Thankfully for her, no one died. I sit here wondering what help she will truly be given and what changes won’t take place because of it.

I sit here and wonder if my child will be next.

Did you know the state of Idaho does not have ONE anger management class or sessions for our youth? Not one, so they say. My child has actually reached out and asked for help with this anger that comes out of nowhere and rages out of control. He hates it, we hate it, but how do you control it? How do you stop it from unleashing in the first place? Doctors want to throw anti-psychotic after anti-psychotic at them but it does NOTHING to help the child. My child doesn’t do well on meds. Period. We’ve tried so many of there damn drugs but not one has helped. He lives with extreme over the top anxiety and panic attacks and nothing has touched it. It took YEARS to even try a fast acting anxiety med in the first place because they were too concerned with addiction than helping my child.

So my child suffered for so long without help that it’s become out of control and beyond where it needs to be due to lack of help in the beginning when we needed it most. Addiction is more concerning to them than the actual wellbeing of your child NOW. Off label meds are used more often than medications meant for the issue to begin with.

One of the biggest issues with long term drugs is that it can weeks to months to be effective. So they trial a med, fight off the side effects, only to have it be ineffective or cause more problems only to finally stop it and trial another, and another and another, to no avail. At some point the child will refuse meds. And then rage at the worthless system he finds himself under.

The state of Idaho has no real respite for older kids. I am just now learning of one on the east side of our state yet no one had mentioned it to me before. Why don’t we have one in the most populated area of our state? There are plenty of respite ideas for those with young kids but not a damn true respite for our older teens that benefit both the child and the parents. So the government contracted with the Hay’s house. A local shelter in Boise that takes kids. Apparently, paying good money from the government of Idaho to the Hay’s house to provide the needed respite for our kids in the system. Guess what? They denied my kid.

After taking weeks to even try and get someone to call me back and then go through the application process and set up a tour. I simply got a phone call telling me they don’t take kids with autism. They also don’t take kids with health issues even though my son doesn’t have any needed equipment or really any special care beyond, let him rest if he needs to and don’t require physical activity if he’s hurting. So why are they getting funds from the government, likely from us tax payers to provide a service, ON PAPER, that they are refusing to provide? It’s funny and ironic that the court order in my kids case simply says, “keep seeking respite…” Yup, we’ll keep seeking but never find.

And they wonder why kids finally explode. They wonder why suicide rates are high and ever climbing. They wonder why kids take their aggression out as a school shooter. I wonder what help the poor girl didn’t get and how long they battled the system trying to find it before she finally snapped. So what change did this incident bring about? Likely not a damn thing.

Respite for teens should provide a safe place for teens to have both enjoyment and a break from their families while providing a break to the parents as well. If one is suffering, the other will too. So if a kid goes to a place like Hay’s house and can’t even keep his phone or certain personal affects while there, please explain how that is not much different from detention? So even if he did get accepted, I can only imagine the anxiety in the back of my mind worrying about how frustrated my kid would be not having access to his basic personal affects while supposedly getting a break from the household… I honestly don’t think that would provide a real sense of relief, ie, respite. But it would be better than nothing…. until we can one day get real services and respite for our teens. If it’s not too late.

I’m so disgruntled by our system, our state, our health care. They are admittedly reactive and not preventative. But even their reactive measures are subpar, always shoving a square peg into a round hole and not getting results while continuing to try.

I would love to start a non profit and create a teen respite center in our state. A center with input from the very teens who would utilize it. But how do I do that? I’m just a disabled mom with ideas, a lack of education in that area, and very little energy to walk on my own two legs. But we need it. We need it desperately as do thousands of other kids in our state who are suffering like my kid is, just like the parents who struggle and need that break but are too afraid to ask for help or have asked but haven’t been heard. My ideas are endless on this program I’d like to create.

I’d also like to fix the broken juvenile justice/mental health system in our state. A REAL solution that would benefit our children that really does look a lot like common sense but our system is stagnant, apparently slow to change and how does one be the voice of change? I HAVE A SOLUTION!! But my voice travels out and fades away and doesn’t reach the ears of those who might actually be willing to make a difference. How can I be heard? How can I share my ideas that would help our kids in at least two areas where our state has failed? I need legs. I need someone to be those legs to reach the people necessary and then convince them to simply start by listening. Listen to my proposal and lets start working on solutions rather than wait till something even more drastic takes place that finally gets someone’s attention.

Will my kid be next?

Update to this post:

Not long after writing this post, I argued with his current psychiatrist about the state of affairs in our state and his inability to handle treating my son’s anxiety with a simple medication to do just that. He told me they don’t really offer those meds to kids and he didn’t feel comfortable doing so. I clearly let him know how unacceptable that is to me and how he’s only harming my child by withholding a necessary medicine he truly needed. I also told him he needed a real doctor to evaluate his physical health issues as I felt his underlying issue is not so much mental health as it is a physical issue exacerbating it, likely genetic affecting my kid and that we can’t seem to get help to diagnose him. His psych suggested sending him to Seattle’s Children where they have a good comprehensive medical clinic. I told him I would be very interested in that. He then went on to mention another clinic in Utah for mood disorders and medicine resistant kids. I voiced my opinion and told him I would like to go to Seattle’s children. He sent the referral to the mood clinic instead.

Why did he bother asking me or telling me about both places if he had his mind made up and didn’t accept my input? A month later I got a call from the mood center to schedule an appointment for my child. What I found out shocked me to my core. His psychiatrist sent the referral for him to get shock therapy. I don’t know about you, but I’ve researched that and let me tell you, the horrific stories coming out of shock therapy will blow your mind. These kid can come out with serious brain damage and permanent memory loss. So essentially, they wanted to shock the anxiety and depression out of my child rather than investigate the root cause of his physical health issues that affect him in ways that present like mental health. I would never ever risk harming my child or risk changing his personality all to avoid some meltdowns when he cycles through them after feeling trapped in his cage for being stuck without recourses. What kind of doctor orders such a thing without figuring out the health issues affecting him? I was so appalled. We never went back. FYI, the first thing mentioned before attempting such a dangerous procedure is to make sure there are not any physical health issues affecting the patient as well as a list of issues that would be contraindicative of him receiving those treatments which he has several of.

What people fail to understand as they’re simply ignorant to the mysteries of the human body, is that when mental health issues appear in someone, it is always imperative to rule out a physiological cause BEFORE labeling and treating a person with psychotropic drugs. But we’ve gone away from that for a long time now. Pysch meds are handed out like candy. Are there any discussions about the drugs kids are on when those violent encounters do happen? Do we ever talk about the damage those drugs can cause kids? Did you know many of them are not even for kids but adults over 18? And yet they hand them out like candy.

Twenty two years after I first got ill, I finally got diagnosed with a very rare genetic disease. Guess what? This genetic disease can present in kids as a mental health issues when their bodies are not being regulated by the diet that affects them as they don’t break down certain products in the body which builds up and makes them sick. A genetic disease I might have very well passed on to my children as their health symptoms are similar to mine in many ways. And yet, instead of those doctors testing him or looking into these diseases, they rather shock his brain and cause head trauma. Instead of giving a fast acting anxiety med to calm him when he’s feeling panic, they rather give him drugs that caused him harm and do nothing for anxiety. I truly hate our system.

Do I really think my kid would actually be the next shooter? No. But I see how it can happen in our world. I see how lack of real medical help, lack of appropriate prescriptions and a serious lack of services can lead to that very thing. And that’s not even talking about those coming from a troubled background who may also suffer from similar issues but don’t have parents fighting for them like I fight for my son. I feel even worse for them. At least my kid has all the love in the world. He’s also a great kid. He’s intelligent, helpful, intuitive, and brilliant in so many ways. He’s just lacking the proper medical care, the lack of services, and lack of outlets he needs while living with a disabled mom who can’t help him in the ways in which he needs as I’m still seeking help and services for myself as well. He needs a mentor, a physical trainer, someone to be the friend that also handles the adult responsibilities we’ve been unable to consistently provide him due to illness and his father working nearly every day of the week.

We finally found a psychiatrist to evaluate my child who has been worth every bit of the time and travel it takes to get to him. He is brilliant. He also has worked with many kids with rare diseases. He didn’t bat an eye at prescribing the appropriate medication my son needed. He is concerned with the here and now and not some future fear of addiction that holds him back from actually treating my child. He believes me. He also believes absolutely that my son is dealing with a rare disease. And this was before I got diagnosed. He’s been fantastic at signing off on testing for my son. He listens. My son absolutely does well at those appointments. He gets to see the side of my son that I know and not the side of the anxious angry teen that is tired of the medical system and tired of doctors dismissing him and treating him like he doesn’t matter. He looks forward to those appointments and feels respected. Maybe other doctors should take a page from this one’s play book.

In my search to get my son tested and treated for his physical health issues, his prior family doctor refused to write referrals needed for my son. He refused to reevaluate my son’s liver when it showed enlargement on his MRI, completely dismissing that finding and telling us not to worry about it. He’s suffered abdominal pain for nearly 3 years now. FYI, liver involvement is part of the disease I suffer with. It can absolutely be fatal. He dragged his feet in getting him a referral to the university hospital. 4 months of arguing back and forth. He deleted all our medical emails from the system when I complained to management about the behavior and lack of care from this doctor. Isn’t that illegal? Major red flag. He insinuated I was a Munchausen mom and told me to my face that what my son has was NOT a genetic problem and I’d have to come to terms with the fact that his issues were likely all mental health. That was last year, the last time I spoke with him. He was wrong. How sorely wrong and his ignorance has caused harm to my child. And they wonder why my kid hates doctors.

The child I mentioned at the very beginning of this blog who was diagnosed by a doctor out of state, well his mother wrote a blog about her son being the next school shooter. She was desperate and reaching the end of her rope seeking medical help for her child as we seem stuck in a state with very ignorant medical personnel who are not helping our children. I’m positive there are some good ones here, good luck getting in to see them. That mother reached out in the only other way she knew how, venting her frustrations for the world to read and it took that level of desperation for someone to finally listen. Someone who read her post and recognized the symptoms in her child. He finally got diagnosed with a condition that isn’t even rare but our Idaho doctors couldn’t seem to recognize. He finally got the care and help he needed and is doing very well to this day.

I guess in my own way, I felt like I was doing the same in highlighting what a truly broken system we have. But there are also other things people misunderstand. Words and actions are two very different things and context means everything. I had a relative who has no interaction with my child, who lives in a completely different state and based on a conversation from another relative with her own mental health issues, he accused my child of being the next school shooter. He accused me of not doing enough to help my son. He accused me of being a parent who would contribute to causing an act so violent and ugly. Didn’t matter that I showed him a copy of his medical record discussing these issues showing him MY child is being taken care of to the best of my ability AND these conversations are discussed with his doctor. Didn’t matter that MY child doesn’t have the qualities involved in psychopathic behavior. Didn’t matter what I said at all, he simply chose to insert his own beliefs and opinions about my child making accusations and judgements without context, facts, or even truly knowing my kid like I do. He was angry I didn’t send him to shock therapy. He thinks doctors are always right and don’t get it wrong. He doesn’t know the system like I do, our states current lack of programs, the snails pace in getting kids into appropriate doctors, with YEARS, not months waits in between. I’m not asking for judgement. I’m asking for compassion, understanding, and maybe some help. But if you can’t establish a relationship with your own relative and you chose to instead steal items from my child, yes that happened, please don’t come at me with your own misguided opinions of him.

Part of those accusations from my relative was actually due to my kid wanting to seek out euthanasia when he’s old enough to legally do so. Yes, my son has talked about this. Yes, his doctors ARE aware of this. And WHY has my son talked of this? Because he suffers in chronic pain. He suffers with his body not working correctly and dealing with horrible symptoms that LEAD to him being anxious and depressed and overwhelmed because of his PHYSICAL suffering with no answers or appropriate treatment. As I said earlier on, he has a physical health issue being undiagnosed which triggers mental health issues and frustration living a life hindered by these physical issues and being unable to do strenuous tasks which can put him bed for days after. That’s a heavy burden for a teen to deal with. He doesn’t want to end up like me and being disabled and only able to tolerate medical appointments (barely) and then back in bed day in and day out. What kind of life is that? He watches my progression and it kills him inside.

Should he be punished for voicing his thoughts? Are we now the thought police? What is wrong with a child being honest when trying to explain the depth of his suffering? This is the comment that led to the accusations from my family member. Then the recent case of an idiot parent who basically put a gun into her violent child’s hands that led to more accusations from a family member who stooped so low enough to assume I’d be that kind of parent. You can’t imagine the anger I felt from this. This wasn’t coming from a place of concern but from a place of control. I don’t play that. I will defend my child to the moon and back. My kids are my heart and soul, my life. If you think I don’t have their best interest in mind, then you know nothing about me. Nothing.

Our system is set up for failure. Too many fall through the cracks. It’s backwards and broken and does more harm than good in many cases. Lack of programs, lack of providers, specialists, and mental health programs. Gaslighting in the industry and blaming mental health for everything rather than digging dipper and or simply admitting it’s above your paygrade if you can’t figure it out causing harm to patients due to fragile doctor egos.

So much misunderstanding in mental health in general. Words spoken in panic or meltdown that don’t match a person’s behavior during normal times does not mean a child is dangerous or harmful. PDA Autism is completely misunderstood by those who do NOT have children’s with autism. Unless you have experience and knowledge then your opinions are unwarranted, unwanted, and ignorant. Words spoken in meltdown when a child is feeling out of control of his feelings are simply words spoken for shock factor to go to the extreme in their own way of getting others to see, they’ve hit their max, they’re overloaded and it’s time for a time out. This is actually a very COMMON issue with kids on the spectrum and only parents with autistic kiddos understand that struggle. They sure and hell aren’t going to tell you it’s simply a ‘discipline’ problem or their kids are just spoiled. Those are two very completely different things. The problem is those without kids and especially without kids with autism think they know better and feel it’s ok to tell you otherwise when they couldn’t be more wrong. Very wrong. It’s easy to judge. It’s not easy living in my shoes.

Screaming to no avail

Voice hoarse, throat scratchy, dry and painful

Emotions flat yet raging inside

My mind a swirling mix of emotions and thoughts

My body clinging to life when I dream of it simply letting go

Screams of silence

Echoing in the chambers within

Lost in the confines of unstable uncertainty

Pulsating into the depths of despair

Always screaming, forever silent

With a thousand faces yet none aware