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.