(The title may seem misleading at the moment. By the completion of this article, it will make more sense. This is a work in progress. ) While working on this article, I’m publishing early to allow for comments and ideas if anyone is interested in sharing to highlight the issues with our medical system. I can only share my own experience and what I’ve witnessed. So if you have anything you want me to mention that needs change, please comment so I can look into it and possibly add to the article.
Our system needs to change. It’s not working for millions of people and lack of awareness of the brokenness of our system isn’t helping. Repeating the same mistakes isn’t helping. Even with studies highlighting some of the issues leading to this disfunction change is not occurring.
I want to change the system. I want to bring awareness to some of the problems within our medical system and highlight some ways to bring change so we can avoid making these same mistakes that lead patients to taking things into their own hands; to avoid leaving patients in pain, limit their suffering, offer support and fix the errors that lead to confusion, dismissals and lack of care, especially to patients who don’t fit into neat little boxes. And maybe to bring attention to the fact that too many of us are suffering from chronic illnesses and conditions that aren’t as rare as they purpose.
I want to share my story and my son’s story as well to highlight the difficulties and challenges that have led to a breakdown in patient care. My story is not unique. I’ve discovered so many of us who suffer the same. This should not happen. We need change.
Textbooks are great for basic knowledge. But textbooks lack an essential component to doctors who treat or come upon patients suffering with unique symptoms or simply chronic conditions. What I’ve learned, simply by joining patients groups for various diseases and disorders, is that no two patients are completely alike and that textbook knowledge doesn’t come close to understanding what it is that patients suffer with on a daily basis which leads to a great misunderstanding and often dismissals of patients concerns. For example, I was once told, “MS doesn’t cause pain,” by a physical therapist. Join any Facebook or community group and see for yourself how many MS patients suffer with chronic pain, as well as how many have been told what I was, “MS doesn’t cause pain.”
We need a website set up for each disease or condition. A database that patients can access and share their symptoms that can be cataloged and graphed. It can have oversight and a team set up to verify information, diagnosis, ect. A separate site can be set up for those undiagnosed to share symptoms and other information. There’s a lot to go into it but it can be done and managed with access given to researchers, doctor’s, patients in some form or another. A section set up for patient chat with the understanding that researchers and doctor’s can have access to read, monitor and understand the day to day life of patients who suffer with whatever they specialize in so they can draw a better understanding beyond what the textbooks teach. Researchers and textbook writers can then take this information to expand upon the current information being taught in medical school. We need to get rid of the idea that doctor’s should always assume patients are horses, ignoring the zebra standing in front of them. We have way too many zebras in our world today and many of us are not being seen, heard, understood or taken care of.
This is a work in progress. I plan to edit and add to this blog as I go until I determine how I want to proceed in shaping and sharing my story. I thought about simply saving it as a draft but decided to publish it for now to allow input from anyone wanting to share their ideas, struggles or their own story.
It may take me a while to bring this to completion but it’s my goal to do just that. Being disabled is tough. In addition I’m taking care of a child who has his own disabilities.
Parts may be written offline and incorporated later. Eventually, I’m looking to publish this work and advocate for this change our medical system needs.
I’ve been sick a long time. As I’ve navigated the medical system trying to solve all the pieces to the puzzle, I’ve been left adrift at sea, floating aimlessly towards the waterfall taking me over the edge and to the other side. Unfortunately, doctors don’t seem to see the waterfall in front of me.
My body is falling apart. I have so many health issues taking my body in different directions but one in particular is driving me downwards on this spiral towards death that I feel deep in my gut, my heart, and my mind and yet I don’t think the doctors and specialists have an inkling of how serious my condition is or even a true understanding of what I’m suffering. I can only feel it as I fight the system, begging them to figure out what is tearing my life apart.
It’s not my ME/CFS causing this spiral. It’s not my connective tissue tearing me apart. Fibro doesn’t escalate. In 2015, I began to experience body wide vibrations which feel akin to holding onto an electrical current that pulses through my body at various intensities. It’s not left me since it first began though at times it’s barely perceivable. It’s either an issue of the muscles or the nerves but not one answer has been forthcoming. At it’s strongest, it’s been felt by others in my thigh muscles, where it seems the strongest.
In addition, my legs became like jello with heavy weights and difficulty in moving them. That feeling is not as bad as it use to be and seems to have gotten better. I’m left with fatigued muscles and a perceived slight weakness in my legs. I developed weakness in my hands as well. Not terribly, but enough to notice as I drop things much more often and don’t seem to have as much strength as I use to. I had a tremor at that time which has since disappeared only to rear it’s ugly head every now and then. Shaking in my legs that are visible and annoying that comes on out of nowhere to simply disappear once again.
I do have something neurological plaguing me. My feet lack sensation. My legs and hands go numb or tingly and I’ve had burning sunburn feeling for months in my back, a warm liquid sensation down my legs, burning patches on my skin, cold ice sensations in the back of my head and random neurological symptoms that come and go out of nowhere. The pain is body-wide. The pain and fatigue rule my life like no other. Pain in my muscles, my joints, and what I can only explain as a raw nerve like pain which predominates in my lower back, hips and legs.
My gait changed on me several years ago. It’s like the signal in my mind did not match the signal in my body. My mind tried to walk at normal pace but my feet did not operate at that speed and I took a few falls. My legs don’t seem to want to take the fast large paces I’d been accustomed to as I now walk with a short slower shuffle. It’s odd. When I try to walk faster, I can trip over my feet. The pain in my hips, thighs and butt has been severely intense requiring around the clock pain meds in order to function. I can’t stand long nor walk far without the pain increasing.
I developed faciculations about two years ago. Predominately in my thighs and butt muscles. Last year around August, I started dropping weight. In addition, my butt muscles atrophied. They’re gone. My round bulbous fat booty is no longer. My skin sags off my backside and I’m flat and unsightly back there. The fasiculations continue. On occasion, they have moved to my mid spinal area on the left side. I developed pain there shortly after. My back muscles feel weak. My shoulders and neck are weak. It’s hard to sit or stand unsupported. I’ve not had many fasiculations in the upper body though recently started them in my right arm in the back with a single muscle that flared up in pain. Will I atrophy there next?
Back in 2015, I developed cognitive dysfunction. Words were coming out backwards, memory issues, and brain fog. I told my hubby something was wrong with my brain. They found lesions. Only three small lesions, two in the frontal lobe and one in the occipital lobe but tiny and nonspecific. No answers were forthcoming. Though my speech has gotten better, my voice box is not the same. My voice had become more horse and deeper than it had before around the same time as my memory issues hit. Recently, I’ve had a few minor episodes of losing my voice momentarily. I developed a cough around two years ago. I am a smoker so there’s that.
I suffer from internal spasms. Colon spasms, diaphragm spasms and esophageal spasms. I can choke on my own saliva. This too got worse a few years ago. It seems to come and go like a roller coaster ride but the difficulty in swallowing is more consistent, there are period where I can ignore it as well as periods where I can hardly eat. Last year, I started dropping weight. I lost over 15 pounds in a few short months and from then, 135, to now 110. I have difficulty with my appetite. I don’t often feel the sensation of hunger. My bowels don’t often feel the sensation to defecate though I feel it at the sphincter area, not in my abdomen. Sometimes eating causes pain and or nausea. It’s hard to eat much and I get full quickly.
I just recently had surgery both exploratory and a hysterectomy. The doctor found endometriosis and removed it along with adhesion’s on my liver which were removed. The shocking part, during exploratory, he watched as my bowels danced in front of him, on their own accord, something he’d never seen in his many many years as a doctor. Even under anesthesia, my bowels had a mind of their own and they spasmed over and over again. I can only be thankful this was seen so that I can get a write up to share with my gastrologist who has yet to dig deep into my digestive issues. I feel no one has really taken me seriously thus far. Symptoms of pseudo-obstruction or volovus which I’ve mentioned yet no scans were ordered for me..
My surgeon, upon meeting with me during recovery, immediately mentioned my need for a neurologist. I’ve seen three already…. He gave me a suggestion and I realized it’s one I’ve researched prior and tried to see but was denied a few years ago. Maybe now, with his recommendation and write up, she’ll accept my request. Will I finally get answers to the neurological part of my health issues that have plagued me for so long?
Is it one progressive condition or two separate conditions due to the length of symptoms over 20 years and recent seriousness or change over the last 4 to 5 years.. I don’t know. I do know I’m progressing. I feel my body dying and yet the doctors around me are oblivious of my plight until I’ve hit the anger stage and simply told them straight up, “I’m dying.” That’s a huge risk given how often we’re accused of being ‘hysterical’ “somatic symptom disorder’ or simply ‘overly anxious.’ But I’m simply done caring what they think of me mentally, something that bothered me greatly before. Now, I just want some damn answers. I need help. I AM DYING. The roller coaster ride has had a downward trend over the last several years and the progression is noticeable.
It’s fatiguing to talk. I can no longer sing without serious exhaustion. My body is tight and painful and never seems to truly relax. My thigh has spacisity. My butt is atrophic. My spasms persist. My inability to hold myself up without fatigue and pain has intensified. I’m uncomfortable in my own skin. I am in pain. I have lassitude.
The system is slow and uncaring. Prayerfully soon, I’ll get answers. Since surgery, I’ve had this insistent clicking/clunking in my sternum/chest area. My hubby can feel it and I can hear it. It’s bizarre! Is it my sternum due to my connective tissue disease or my mitral valve? Is it diaphragm spasms? The hiccups are constant but an issue I’ve had for a while now. The clicking is new. I’ll mention it to my doctor during my follow up. Just another annoying symptom to add to the list of many. Will I get answers? Will I ever know what ails me? I’m starting to think I won’t….
There are just some people in life that touch your soul. A good neighbor once lifted my spirits and created her own little place in my heart. She was a special light that shinned brightly. Some people’s light stay with you in life. Whether you talk to them all the time or just on occasion, keeping up with each other through social media but never turning out the light on a friendship that was meaningful. She was that person.
Her big heart, compassionate soul, and love of her neighbors, a trait we’re losing in our day and age. I’ll never forget the meals she made and brought over, just so we could try something new and eat, leaving me recipes that still get used to this very day with a smile as I think of her. The ‘welcome bear’ given to us as a parting gift when we moved, once again, that still sits on my porch, HOA be damned, to welcome those to our door. She was a special neighbor. Her love for her husband and kids shinned to those around her. She had so much passion and spunk.
Never timid, outspoken, and straightforward, my kind of person. She was a fire cracker, a momma bear, and an advocate to those around her. She was never afraid to speak her mind and be herself through and through, no games, no deception, what you see is what you get and I LOVED that about her. She helped make some of the best two years at a place known for one of the highest divorce rates in the military. A barren land filled with cow shit and flies, we pulled together as a group and made something out of nothing and survived those years with warm and love surrounding us. Creating community and togetherness in a place many succumb to out of isolation and the stink that attaches on tight and can pull you into a place of dark depression. That truly was one of the worst bases to ever be stationed at.
It’s the people that make all the difference and she was one of those people. Not one to let the muck and mire get her down. Her family became my family as we looked out for one another and knew we had a trusted person if ever in need. But as is the military way, distance separated us but social media kept us together. We all get caught up in our own lives as time passes but the heart remembers as we touch base and root for each other in life.
That special light faded and went out way too soon, taking a small piece of my heart with it. I hope she realized how special she truly is to us. How touched we were by her and her husband. How deeply sad and moved we are by his loss, our loss, her family’s loss. She truly was, one of a kind, a gem, a friendship to be treasured.
I spoke to her a week before her passing and I knew things weren’t good. I didn’t realize how bad they were and her loss so quickly took me by surprise. My heart grieves. My husband’s heart grieves as we recalled all the good times we had. As we shared her memory with my family as we remembered her with love and fondness and celebrated her life (and her husbands, can never leave out that special gem too), but with a deep ache inside as this one truly hurt. I don’t make many friends. I don’t have a long list of those who really touch my heart and hold a special place. That list is short and she was on it. I’m socially awkward and a bit closed off emotionally. I’m too open and honest and that can turn people off. Maybe a good part of why she was so special to me as she too was like this but with a booming personality and without the social awkwardness I carry with me. As I told my husband, with her, I could be myself. With her, I never felt the judgement or irritation for simply being me. She embraced me as I am and I will never forget that.
She will truly be missed. Makes me want to reach out more to the few I hold close to my heart but may not know how much they mean to me. Too many walls and insecurities built around me, protecting me from the hurt so many have caused. I think I will reach out to them and tell them while I have them. Life is short sometimes, don’t waste an opportunity to let someone know how much you care. Hug your family. Hug your friends. Don’t waste time dwelling on the past, worrying about the future, but make time for today as we’re not guaranteed tomorrow.
My friend, your light shined so very bright and you touched my heart and left an impression that will never fade. Your memories live on and I will cherish them. Goodbye my friend. Till we see each other again.
Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.
On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.
On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.
I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.
I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.
Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!
I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.
Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.
I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.
If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).
Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.
I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.
If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!
Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.
Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.
Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.
Many years ago, when my health was a beautiful thing, energy abound, optimistic in life, my future ahead of me, I sat at a pond on my dad’s property, late at night smoking a joint with a dear family member. We had a case of the giggles talking and laughing till we were out of breath. I remember distinctly hearing my family member joke that he was a talking head. That name stuck with me.
As illness took hold of his body, later in life, that night often floating through my mind and I wondered if these were prophetic words of what was to come. In the end, it was me. It was me that became ‘the talking head’ as ME/CFS and other illnesses ravished my body and left me on my back watching life pass me by as I was sucked into the abyss of chronic pain and fatigue. Weighted down by the forces of gravity like sand bags attached to each limb, limiting my ability to function…
I don’t know how to articulate my feelings and experiences
in the small amount of time that we’re allotted. I wish I could take you home for a few days to
see exactly what my life is like and what I go through. It’s not obvious in a
half hour appointment where I’m simply sitting there and chatting. It can’t
even scratch the surface.
A recent blog post of mine:
I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.
I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.
The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.
So, I have a heritable connective tissue disease. Not a drug seeker, an overly anxious pans
positive female, somatic symptom disorder, attention seeker, no, I have a
disease. I’m an actual Zebra amongst horses with a rare disease that finally
explains all of the health issues I battle. 19 years of wondering what’s wrong
and 12 years wasted when a prior doctor recognized the connective tissue
disease, documented it in my record, but never told me and never sent me for
further testing to finally put to the bed what ails me. I could have avoided so
much misunderstanding, so much frustration, not knowing what truly is causing
all the health issues I’ve been fighting.
It’s frustrating that my life revolves around a little pill.
But that pill works so well, when at the right dose, that it gives me a few
hours of my life back and my ability to tend to my household, my kids, my
family. I can’t remember the last time I cooked dinner as I have terrible
lassitude and am usually done for the day by 2 to 4pm.
Researching Ehlers-Danlos (the probably type I have), it can
indeed lead to severe pain and that pain can be for life as it’s progressive
and gets worse over time. It’s only symptom management as there is no cure and
no treatment to make it better. I’m still trying to wrap my head around this as
I’ve always had hope that one day, I will reach remission. One day, I’ll have
my life back for a little while, but these last 5 years and finding out what
truly is going on has shown me otherwise so I’ve been stripped of that hope of
remission and I’m not sure I can handle that if that I don’t have relief from
the pain and fatigue that weighs me down and runs my life. It is severe. I look
so normal and so well, but inside, I’m falling apart and crippled in pain. I’m
on my butt or back 95% of the time.
Occasionally, I get a good day. It’s happened only one time
this entire year. I played catch up and worked on my garden, a task I’ve always
taken delight in. Oh how badly I’m paying for that day. That’s my life.
I cleaned part of my bathroom the other day and paid for 3
days from simply cleaning my mirror, counter, toilet and tub. A task often
neglected until my hubby can get to it or my daughter surprises me and cleans
it for me. Summer is always better on my pain symptoms but much worse on my
POTS symptoms but 6 months out of the year has been the most miserable years of
my life and I’m not sure I can handle another winter without the pain relief.
It’s hard to hold on to life when my quality of living is in the toilet and the
pain consumes me. I know the market is volatile right now. There are groups out
there fighting for us. Fighting for our rights as chronic pain patients to live
as comfortably as possible while struggling with chronic pain. I’ve exhausted
my options and found what works best for me on multiple levels as it helps my
IBS-D, bladder, pain AND fatigue. I really am the rare patient when a pain med,
which makes others sleepy, actually helps my fatigue and gives me some energy
to keep on pushing through. I’ve been at the same dose for a long time now. I
haven’t built a tolerance, but my pain has gotten worse. This is my life and
all that I have to look forward to. I need to know that my pain can be managed.
That I can be as comfortable as possible at least while my kids are young and
need me now.
I’ve read that, as a palliate care patient, writing “palliate
care” on the prescription should exempt a patient from the ‘recommendations’
given by the CDC. Hopefully soon that will change for all pain patients as we
should never have to live in severe pain without relief when there are
medications for this very thing. I just wanted to share what is hard for me to
articulate in person. This is my life.
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.