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 Second Chance… My Perspective Criminal Justice

Our criminal justice system is not without problems. From lack of programs to help people to criminalizing mental health issues. What I’ve learned in my own life is there are ways that create a more meaning impact with better results than to utilize the system the way we do now, especially for our young people who are just starting out, still testing boundaries and not yet at the point of settling down as they sow their wild oats before determining their path in life.

As a new adult, having freshly finished boot camp, I made a bad decision that could have altered my life forever. I had a few days break before checking in to my training school to start my career field, I went home to party with old friends one last time. I had a few drinks and was likely over the driving limit and even though I felt fine in my own mind, I made the stupid decision to drive over to a friends that wasn’t far down the road. I got pulled over. I can’t remember why I got pulled over in the first place but regardless there I was, flashing lights in my mirror and a fear clutching my heart as all I could think in that moment was my career going down the drain.

The officer smelled the alcohol on my breath right away. He saw my uniform in the backseat and asked me about my military status. I told him how I just completed boot camp and was saying goodbye to friends one last time. He was a human being. It wasn’t just black and white to him. He knew the seriousness his next actions could have on the rest of my life. I wasn’t a bad person. I never harmed anyone. I partied as a teen but I also held down a job, finished my education, and pursued a career in the military all while living on my own since the age of 15. I could have been a statistic but I worked hard to not be. But I made a stupid decision that day and my future was held in the balance by the officer outside my car door.

Shortly after, another officer pulled up behind the one at my window and in that moment I felt defeated. But the words that came out that officers mouth changed everything. He gave me a quick lecture and told me to get to my friends house and don’t repeat the same mistake again. My friend was literally two streets away. I wasn’t incoherent or intoxicated to the point of being sloppy but I was sure it would have registered over the limit. I very carefully drove out of the parking lot and went to my friends house down the street, in shock over my 2nd chance. I never drank and drove again beyond the 2 drink limit. (I could hold my alcohol back in the day, I think 2 sips would blur my vision these days as I don’t drink and haven’t really in probably 15 years).

That officer could have changed my life in ways that would have had lasting effects and limit my opportunities to succeed. Being in the system changes things. I’ve watched a friend who struggled quite a bit, being in the system. When she finally changed her life, she found herself stuck. No one wanted to hire a felon. No one wanted to rent an apartment or house to a felon. Simply having a record kept her from having a life that would keep her from falling back into the system. If it wasn’t for her father owning his own business and giving her a job, she’d likely still be in the vicious circle of hinderance being in the system does to a person. How can one actually succeed when there are barriers in place for making those prior mistakes? It simply adds more negativity, strife and hardship, keeping people down and not doing anything to help ‘rehabilitate’ or help them to be successful. Our system sucks.

Another example of how a 2nd chance can truly make an impact more than a criminal record ever could. My ex boyfriend in my teen years made the decision to sell weed in order to make money. He was probably 19 at the time. He wasn’t any major dealer, just sold some small bags to friends and those who reached out. No hard drugs. One day we were both out and when we came home we found a business card on the coffee table right next to his weed box which sat open. I can tell you now, he never left his box open. Ever. Apparently, the bug man snooped through our stuff. Not only illegal but completely unethical. Well that idiot called the police on my ex and shortly after, we had a knock at our door. A detective paid us a visit. He told us he knew that **** was dealing weed and how a record could affect the rest of his life. Then another knock came at the door. Two recruiters for the military stood there at our door and the detective invited them both in to join ‘our little get together.’

What a crazy freaking experience. I was actually curious about the military, just not that branch of service, and to this day, I wonder if they set that up on purpose. My ex’s mother was the supervisor of the supervisor of the apartment complex and his dad was prior Navy. I don’t think the detective could have arrested my ex for dealing off of an illegal search and rumor from the bug man but nevertheless, that visit changed my ex’s life. Not only did he stop dealing that very day, but he also quit smoking weed. His life changed that day. He’s now married with kids and been working a full time job, being an adult and making a life for himself. He avoided the system.

These examples show that a simple 2nd chance can make a big impact on some of us. Maybe not everyone takes the hint. Maybe some will just laugh it off and continue being stupid but it can catch up with them and deservingly so. But I personally believe that 2nd chances would change more lives than realized. When we have a for profit system and rewards for tickets, arrests, and quota’s, that limits the ability of officers to make that choice to give a person a 2nd chance. It makes it all about money rather than the idea of rehabilitation, helping people, making our planet a better place.

Obviously, there are some ‘crimes’ that would never be on that list of 2nd chances. Rape, abuse, murder, ect. But for other things, a 2nd chance can be life changing and allow for better growth and change than a criminal record ever could. The system is a messy place and it follows you forever. People make mistakes and people absolutely can change and make better choices. Our young people in particular can use this kind of help. Most of us sowed a few wild oats back in the day and then we grew up.

An even bigger problem I will highlight here but deserves it’s own blog, is the criminal justice system and mental health. Having discovered here in Idaho, their method of helping juveniles get the services they need is to put them in the system as a criminal has blown my mind to a whole other level, creating anger, mistrust, and a tainted view of our state justice system. Once in the system, it can create the vicious cycle that can potentially add to their mental health issue they’re already suffering from but also hindering their chances of success. The answer to someone in a mental health crisis should NOT be to charge them with a crime in order to ‘make sure they’re getting help.’ The hardship that places on families and the burden it places on these kids is not the answer. I’m not talking about someone committing a crime in the community and blaming mental health. I’m simply talking about someone having a meltdown, mental health crisis, in my example, in my own home simply needing transport to the hospital.

What a broken system if we can be allowed to place these additional burdens on people who have enough burden on their plates to begin with. There are simple solutions and yet we don’t utilize them. It feels like common sense is becoming less common and systems just seek to place more barriers and burdens that complicate matters when it shouldn’t be that way. In these cases, it’s not about 2nd chances but common sense systems in place that can be utilized, separate from the criminal justice system. It seems no different than kicking a dog when they are already down. But I’ll save more on this issue for a separate blog. It needs attention and needs change.

I wonder if we took this 2nd chance approach, how many people would turn their lives around or make better decisions moving forward? Even if they still continued to make mistakes, how much more careful would they be with that prior experience in their life? Maybe some would completely change. Maybe others would just be more careful which in the end is still a win if it avoids certain behaviors that could possibly impact others. And to those who choose not to learn from their mistakes nor take advantage of their 2nd chance, well, the system awaits them.

Political Medicine

I’ve always known we had issues with our medical system. Over specialization (lacking the ability to see the whole picture), lack up 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?

Silent Echos

Crying a dozen tears,
collecting puddles along the way
Anguished over lost years
Waking to the same, each day

Feeling trapped, paralyzed with fear
Heavy chains pulled tight
Is there no one to really hear?
I toss and turn throughout the night

A body that won’t comply
An overwhelmed and angry mind
Struggling with the thought of goodbye
Will there be a rainbow that I find?
Or am I lost, lost, only to be left behind… DM 7/5/21

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.

I Understand..

There are so many issues that divide our society. From my own personal journey, I can truly understand both sides of many issues. There really is no black or white but various shades of gray that make up our feelings and frustrations due to our experiences in life. Those stuck on either side of the black/white issue, simply have not experienced or walked in our shoes. They are blinded by their own journeys in life. That does not make them wrong, it makes them simply ignorant of the experiences of others and unable to see how others got to the place in which they view their side of things.

Broken

Lost.. drowning. Chewed up. Spit out. Unheard.

Not all voices sound the same.

If I tell you I’m struggling, imagine it 100 times worse. If I get denied the services I requested, I must not be screaming loud enough. Not all voices sound the same. Listen to the ones who speak quietly. They’re the ones who hold back. They’re the ones that put on a brave front and try to hold down the fort. The rocks. When they tell you they’re breaking, then listen to them. If they tell you they’re broken, they broke a long time ago and you just ignored their pleas.

Scattered pieces flittering away on the breeze.

Remnants battered, having been tossed to and fro.

Hands trembling, long held out, reaching without purchase.

Voice hoarse and whispered from the cries never heard.

Mind spiraling into darkness, shattered, broken.

Broken.