Let’s Be Real

Life is like a panic attack with people constantly coming up behind you and saying, “Boo!”

Life is like an amputee, when you’re having someone hand you some water but they hold it out two inches too short to reach.

Life is like an insistent tapping noise when you’re dealing with major sensory processing issues.

Life is like being stabbed then having someone push on the handle over and over.

Life is like a migraine, and someone projecting flashing lights and high pitched noises in your face.

Life is like a funeral that no one shows up to.

Life is like giving a speech except you’re the one naked.

Life is like a nightmare that you can’t wake up from.

Reaching the door but it shuts right when you get there.

The window that’s stuck during a fire.

Limping with a broken foot and stubbing your toe.

The scream that never escapes your lungs.

The sleep that never comes.

When you tell someone that water is your favorite drink and they hand you a soda.

When you tell someone you’re diabetic and they give you candy.

Let’s be real… because most people aren’t. No one wants to hear your truth. Your struggles. No one wants to understand or make it better. It’s just lip service.

Our Broken System

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….

My VA Surgery Nightmare; no wonder people get medical PTSD.

2017 VA Hospital

                                      My VA surgery nightmare

In February 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.

                                                                                                Dianne MacKay 8/26/19