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?
It’s amazing to me how many people are willing to sacrifice others for a false sense of security, to make them feel safe. It’s even more amazing when it comes from someone in your own family who has had the time to know your life, your experience, your health issues, your story, and yet they still want you to eat the cookie that could potentially kill you, just to make them feel safe.
The cookie in question would be a cookie that you have a known allergy to, as well as a prior history of eating that cookie and having your health destroyed. Knowing there are many others like myself who have also eaten that cookie and had the same reaction and struggling just to live life with the myriad of conditions and health issues spurned by those damn cookies.
Those cookies destroyed my health. When trying to find out why, no one seemed to care. What makes my genes different? What made people like me respond in the way in which we did? There’s an obvious genetic component involved but no one wants to study the issue. Why? I can only assume, since the manufactures have no real liability, they have no real incentive to research the issue. Studies costs money. There are many many willing participants who’d love to be involved to see what makes us different so we can enjoy a safe cookie like everyone else but we’re the minority and I’ve since learned, we really don’t matter. No one wants to spend the money and they likely don’t want to admit that their cookies can cause that kind of harm in the first place.
For two decades, I’ve brought up these questions. I’ve asked medical personnel. I’ve been silenced, gaslit, and told correlation doesn’t equal causation… Let’s think about that last statement. Correlation doesn’t equal causation. Wow, can that apply to many things but in my cookie case, it almost always seems to apply. We know that only a small number of people have their injuries reported in the first place. This is fact. Even drug reactions are rarely reported, I’ve witnessed that many time. If these reactions are not being reported as they’re supposed to, then we don’t have a legitimate accurate database where we can see how many people had the exact same reaction and how that reaction grew over time. We miss the obvious, that many have had that same response and correlation is looking much more common than otherwise reported. Seeing those numbers would then, ethically prompt more research into the issue. Just like a black box warning applied to meds that were later deemed unsafe for a subset of the population. But cookie injury reporting is one of the least of all reported types of injuries. Again, is it the lack of liability? Why wouldn’t we want a safe alternative for those who can’t digest it?
In becoming injured by those infamous cookies, health declining and disabled, I have become the vulnerable. The vulnerable who can no longer eat of those cookies. It would be harmful to my health and since we don’t know what the mechanism is behind it, we have to assume it’s the entire cookie. Had they researched the issue, maybe we could have pinpointed something in it or understood the way in which my body processes those cookies but again, no one cared enough to investigate the issue. In addition, current cookies now contain an ingredient that I do have a known allergy to. And sadly, I was told by my own family member that I should eat it anyway. Aren’t they the ones who are supposed to eat the cookies to protect me? The ones who can’t? That’s the line we’ve been fed for generations yet that somehow suddenly doesn’t apply? Or is my family member just being toxic and selfish willing to sacrifice another for the impression of saving himself? That’s what catering to the ‘greater good’ does to people. It’s always at the expense of another and I just so found out, I am the other they’re willing to sacrifice. Doesn’t look good on this side of the fence.
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 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.
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.
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.
Our system has it backwards in regards to helping people with a mental health crisis. Let’s be honest, oh wait!! You can’t! That’s one of the biggest hinderances to people receiving help. You absolutely can NOT be truly honest.
The stigma with mental health is another huge barrier to those who truly want to seek help. In addition, it can be illegal in the sense that one can actually be CHARGED with a crime rather than simply getting someone the help that they need. Please explain how charging someone ISN’T counterproductive in helping someone struggling with mental health issues. Sure, let’s add the criminal stigma to an already added pressure of the mental health stigma. Not to mention, the criminal aspect follows you for the rest of your life and counts towards an offense in your file. No pressure, stress, or harm caused there, right??
Shall we talk about the lack of services, providers, and understanding in our community. You need help, but sorry, it’s a years wait and the providers currently available are fresh out of high school with little to no experience. In addition, all MUST fit into the same neat little box and benefit from talk therapy. It’s one size fits all. And here’s some medication while we’re add it. Don’t worry about the horrible side effects or the fact that you don’t process the medication very well. Try the next one in the same category. And the next. And the next… But we won’t give you something for that severe anxiety that could help you now cause it could be addictive.. so we just won’t prescribe it. But try this off label med instead… it can take a couple months to be effective… if it works for you.
Honesty… When being honest nets you a jail cell or someone coming into your life to control it in ways that they think are being helpful but in actuality make things tremendously worse and cause more harm…. Haven’t they learned yet? Maybe they’re the ones with the mental health problem since they repeat the same mistakes over and over thinking they’ll net different results. Not everyone needs to have their lives controlled and items removed and meds stopped due to the thoughts in ones head. Isn’t ‘talk therapy’ one of the ways in which they say will help? Just don’t talk about that! Or that! Or that!
If a person truly wants to end their lives, they WILL find a way to do it. It doesn’t matter what you remove from their presence, they’ll find a way if determined enough. Yes, we all have those negative thoughts in a crisis of anger that, well, sound terrible, but does that mean the person is actually going to act on it? Shhhh… let’s not discuss that either. You just might be charged for your negative evil thoughts.
How about simply offering ACTUAL help in the FORM that someone needs? Wouldn’t you think that might actually reduce the amount of stress and overwhelming depression a person is suffering? No, let’s lock them up instead and add more work, hassle, embarrassment, stigma and, oh yeah, more STRESS to the equation. How about finding out what their needs truly are and why they are suffering and find solutions that help them actually function? We don’t really have programs available like this.
A lot of my own stress and anxiety is from being disabled and trying to take care of my children, one which battles his own health and mental health issues. But they make getting a caretaker nearly impossible! Hell, I had to pay for my own wheelchair since I can walk to the bathroom in my own home. We have tools to help but we won’t allow you to use them until you’re so messed up you have no choice otherwise. And respite? A glorified babysitter that gets paid to sit there and make sure your kid isn’t causing harm. How about programs that actually allow them to do something THEY enjoy for once to actually reset and take a break beyond experiencing the same day in and day out that led to their need of respite in the first place. And yes, kids need respite too. Or another option is a children’s home type environment where you’re restricted on your rights and creature comforts which just simply adds to their anxiety and removes items they use as supports, such as cell phones. That doesn’t help the child, it just makes them feel locked up.
Our system is set up for failure. It’s no wonder why we have such a high suicide rate in our state and in our country. From lack of services to stigma to getting healthcare to laws that make mental health a crime, people are not getting the help they need and our state will continue to climb with rising suicide numbers and public meltdowns and catastrophes.
When a person can actually understand why someone would enter a VA hospital and blow his brains out or shoot up a business, then you can understand the chaos our system creates and does very little to change things.
You can’t be honest with healthcare workers. Honesty can add more trouble, red tape, and a host of other problems. Suicidal? Let’s take your guns. Now we have the added stress of being unable to protect ourselves. Let’s take their meds. Now we have to suffer in even more pain. Let’s take their…. quit trying to control someone else’s life. If they truly want to die, they will find a way to do so.
There are no immediate services. I need help now. I need a good counselor now. I need respite now. I need mentoring now. Months of back and forth paperwork, wait lists, no shows…. Try being disabled and having to keep up with the back and forth, the paperwork, the frustrations and not understanding the process. No real help there even when you cry out for help because it doesn’t make sense and no progress is being made.
They’re hiring mental health service providers straight out of high school now. Very little if any training, no experience, and no real passion or drive to help kids who need it. Even the experienced ones assume cases are all alike and apply the same tools and jargon regardless of if it fits the client or not. Stuff the square peg into the round hole… And then basically roll their eyes in frustration when it doesn’t fit. Must be our fault.
It’s truly sad when a law has to be passed for mental health, in particular ptsd, to be covered by workers comp, in a career field that sees a lot of violence and death. How is that even a thing? How was that not covered? How in the hell can they think it’s ok to penalize someone for needing a mental health break? This is the stigma that our world suffers from. We must be strong with all things all the time. It’s not ok to crack when your world falls apart and your child shatters. Smile, nod your head, we’re fine.
Punishing a person criminally for having a mental health crisis. Yes, you read that right. It’s a crime in Idaho. What you say or do can be used against you. How does that make life easier on you? How does that truly help? Now you have a record. Now you’re court ordered to do things and if you’re not mentally right yet, one little slip up adds more charges. Now how does that help someone get better?
We have proven services that can help a person in crisis but insurance won’t cover those services. What they will cover has long waits, poor quality, and not enough staffing. If you don’t have money, you don’t get the best care. What kind of message does that send?
Let’s talk about drug use since it can go hand in hand with mental health. Yet, in our country, we make drug use a crime rather than put it where it needs to be, mental health if it’s beyond simple social use. Again, if you’re rich and high up in the political system, it’s ok, we’ll just cover it up, but the lower end of the totem pole, well, you have to pay society for your crime. And since it’s a crime, have you used any substance before? Of course not. Who the hell will be truly honest? It’s a crime. So how does one get help? It’s a broken system.
If you admit you use drugs, it follows you in your record then the stigma is attached which shows in the bias for any future treatment in the medical system and in the world. If you have mental health issues (sans drug use) it too gets attached to the record that follows you, full of bias in future treatment and lack of services to help you get back on level ground. It’s a broken system.
Should mental health not be one of the most important aspects of life to take care of? Do we not want a productive healthy society? What are the drawbacks to that? Why keep the system broken and people down? It costs more in the long run if they allow people to fall apart and stay there. It costs more in the long run if we don’t provide appropriate services to kids in need. It costs more in the long run if we don’t provide care giver help to families struggling. Why wait till it’s too late, or they’re so bad off it takes that much longer to possibly recover or they completely and absolutely snap? Why are there so many good services out there out of reach to people?
Between our medical system, mental health, insurance and the criminal justice system, we have allowed these broken systems to continue for too long without real fixes that actually provide quality care and real help to those who need it. So many complain about it but very little is getting done. Just my 2 cents….
of 2017, I went to the VA to have surgery. This was my first-time having
surgery at the Boise VA. Two procedures were being done. I was having a bladder
hydrodistallation with a DMSO treatment with my urologist and having a
Bartholin gland extraction. Funny thing
is, that Bartholin gland was supposed to have been removed many years ago (at
military hospital) but when the pathology report came in, no gland was removed,
only fatty and muscular tissue. That was a waste of my time and needless
surgery/recovery as once again, the gland swelled back up and needed out.
I had no issue with either my urologist or gynecologist. They seemed knowledgeable and reputable. I went in the morning of my surgery and all was going well. The nursing staff at check in were great. The anesthesiologist on the other hand, was a real piece of work. He was extremely standoffish and rude and made some kind of off hand comment to me that I can’t remember now but it was rude. My husband took note as well, so it wasn’t just me and he’s pretty giving. So, under I go for my surgery to awake to a nightmare.
I woke up in extreme pain. What I want to make you aware of, is that I suffer chronic pain due to multiple medical conditions for which I’m on pain medications daily for. I know pain. I also know I’m slow to heal and have poor pain control after surgery, which has nothing to do with being on opioids but likely due to a connective tissue disease and having ME/CFS. This level of pain that I awoke to was beyond everyone of my prior experiences, including my abdominal surgeries. I’ve had about 8 surgeries and a handful of surgical procedures in the last 19 years so I know how my body responds. And yay me, more to come.
I found out my surgery was a bit tougher than they realized and I needed stitches four layers deep. The gland was deeply embedded. The only way I can describe my pain is, being on pain meds daily then getting cut open and having someone give you an injection of Narcan (I think this is the drug), eliminating any pain meds in my system. My entire body was flared up in pain and my nether regions were over a 10. The pain was so intense, I was speechless, gasping and frozen. The nurse was made aware of my extreme level of pain and went searching for the anesthesiologist. It seemed like hours, when in reality it was probably an hour which is unacceptable to me, but he finally showed up and said he was putting fentanyl in my IV line. Again, no response. No decrease of pain, no edge taken off, nothing. Looking back, I seriously question whether or not I truly was given Narcan or whether or not someone at the VA (maybe the anesthesiologist) was skimming the pain meds. I know that’s a serious allegation (and a problem in healthcare), but I stand by the fact that something truly was going on. This was not a typical reaction for me and I’ve had multiple surgeries in my life.
I was hurting so damn bad that I refused to allow my hubby to come back to the recovery room when they offered to get him. I was actually terrified of his reaction if he saw me in that much pain. He can feel pretty helpless when I’m suffering and not seeing anyone helping me might set him off in ways I didn’t want to handle in those moments. I do have to say, the nurse accompanying me, was the absolute best nurse ever. He held my hand, whispered to me, comforted me, and felt absolutely terrible seeing me suffering. But his hands were tied. He saw them inject meds into my line and he did ask for more relief but no one wanted to order it. That man stayed by my side to comfort me until I moved off his floor. I truly need to look up his name and leave awesome reviews everywhere I can.
They ended up admitting me to the hospital overnight for pain control. This is typical for my abdominal surgeries, but not for this type of procedure. Having experienced multiple surgeries before, this level of pain was so much more intense than any I’ve ever experienced.
Another thing I noticed was bilateral abrasions on the back of my elbows, with the left side being pretty big. Again, I’ve had multiple surgeries and never in my life have I woken up to abrasions. How the hell did I get injured while put under??? They are supposed to treat my body with respect!! I counted on them to take care of me. How am I ever supposed to trust someone when I’m that helpless after going through an experience like this? They broke my trust. And it gets worse!!
I was put in a room and my husband finally came up to be with me. This was SIX hours after surgery. My husband was apparently very upset and had been left freaked out wondering why I wouldn’t let him with me. I regret that. At this point the medical staff set me up with a diluadid drip. I could push the button every ten minutes for pain relief. Apparently, it was set for 4mg(?) every four hours AFTER I complained that the 2mg was doing absolutely nothing.That was the only adjustment I received the entire time. On top of this, they did NOT give me my daily dosage of oxycodone to take by mouth or in my IV line. This is some serious under medicating. If that were it alone, that’s bad enough. But I was not receiving any relief from my pain. And I’m in the hospital!! I complained about this EVERY SINGLE TIME someone came into my room in addition to pushing the call button many times. My night was hell. I spent every ten minutes desperately pushing a button that entire night and not a damn bit of relief was given. Not a wink of sleep.
I also needed help to the bathroom and no one came as it was excruciating to stand. My husband handled it while he was there but after he left I didn’t have help and I had to unhook myself and stumble over stuff to go relieve myself. My blinds were also left open after dark and I couldn’t reach to shut them and again, no one came to help me. I laid there, awake, the entire miserable night of hell. Not once did someone up my pain meds beyond the daytime increase to the 4mg (?) every four hours via those tiny doses in the that machine. I asked them flat out to call the doctor and to request more pain relief. By the way, I can’t take NSAIDS or aspirin so my options are limited. Rare metabolic mutation, fun times. They offered me a Tylenol.
It wasn’t until the next day that things fell into place. I demanded to be released. I felt with my pain meds at home, I could, at this point, better medicate myself and control my pain, as I had my additional script ready via my PM doctor. I was fed up. Upon getting ready to discharge me and again making my complaints, they disconnected my pain pump and examined the machine. They also took out the entire bag of diluadid from the pump and commented, “We’re going to have to throw away this bag, looks like the pain pump was broken.” I cannot describe to you the rage I felt in that moment. After they looked at my machine multiple times during the night, endless complaints of no pain relief, it took till me leaving to discover my pump was broken?
Again, I wonder about the authenticity of the over night staff. It’s not like they didn’t look at the machine on their visits with me. But they’d throw an entire bag of pain meds away? How do you not see that a machine is not working? Why didn’t they give me my normal meds in addition to the added relief from surgery? Why did they NOT call the on-call doctor like I asked them to get more pain relief? And how the hell did I get abrasions while sedated?! All of these little details and questions ran through my head over and over after I finally recovered. And yes, I filed a complaint with patient advocate. Wait, let’s back that up, I called patient advocate and left two messages. Not one was returned to me. I left a review on the website and no one reached out. I spoke to my surgeon about this at my follow up and he notated it my complaint but nothing was done!
I requested copies of that night for my records. On top of all I went through, I was appalled to see multiple lies within my chart. “Sitting comfortably reading a book.” “Didn’t need assistance to the bathroom.” “Pain level of 4.” On and on they did NOT document my constant complaints. They did NOT call the doctor. The did NOT take care of their patient who put their trust and life into their hands. They simply lazily wrote their notes to cover their shift but did not accurately reflect the truth. IF I was sitting at a Four level pain, why the hell did I complain the ENTIRE NIGHT?!! If my pain pump was broken and I wasn’t getting my normal meds, HOW THE HELL COULD I BE AT A FOUR LEVEL PAIN at any point during my stay??!! LIES.
I will NEVER allow the Boise VA to put me under again. I will never trust them with my body or with my life. They never accounted for the abrasions, nor was it mentioned in my records after asking them about it. I was completely dismissed and disregarded at a very sensitive and painful time in my life. And people wonder how patients get medical PTSD? This is exactly how. One of many ways as we are often dismissed as females with hysteria, anxiety, overly anxious, somatic symptom disorder, and more especially when battling chronic health issues.
To me, this was medical negligence. I’d also investigate the pain medication accounts and see if someone might be skimming the meds. This treatment was devastating to me and I have extreme anxiety over it. Sad thing is, I have more surgeries in my future, one very soon, and now they can add a heavy dose of anxiety meds to the list before hand and expect a serious discussion on pain relief BEFORE I ever step foot in a hospital for surgery ever again. This should have never happened. This also should never have been ignored when I complained not just about the lack of pain relief, but broken equipment being used, abrasions to a patient’s body while unconscious, and LIES in a veteran’s medical records during that night of hell because after all, the machine was BROKEN. Should be proof enough that someone dropped the ball and someone fudged those records.