Four years ago today, I was in a hospital. I was struggling with bronchitis, and breathing wasn’t working out so well for me. As you well know, survival and breathing are generally a hand-in-hand process, so off to the ER I went. I could write 10,000 words on the incompetence I suffered under in the hospital, but I’ll summarize with a few highlights. In the ER, the respiratory team never got the page to come give me an albuterol treatment, so I waited and struggled as my oxygen dropped to the low 90’s, for 2 hours for a treatment I could have given myself at home. Due to my coughing and wheezing, they gave me a shot of steroids, and then tested my blood. Steroids cause your sugar to spike, and this apparently wasn’t factored in my blood draw, so I was diagnosed with diabetes. I was admitted to be stabilized for my diabetes and asthma. I informed the doctors of my current prescriptions, including Lexapro.
In the hospital, they forgot to give me my Lexapro. They treated me for diabetes until they realized that it wasn’t diabetes. Every nurse who came to administer my meds was questioned by me on the Lexapro, and I would get a blank stare and be told they’d talk to the doctor. They began giving me Klonopan, because my doctor thought my respiratory issues were due to panic attacks. At this point in my life, I had never really known what a panic attack was, or considered myself suffering from them. Anxiety and depression were constant struggles, but never to the point of an attack. Either that, or I was so clueless about my mental health, I just never acknowledged them. Both are entirely possible. At that point, I thought Klonopan was a generic for Lexapro, because I had no idea what any of them were. As my symptoms worsened, I began getting migraines, I needed help to get to the bathroom, and I would find myself on the verge of passing out from dizziness. I went to the hospital because I needed a treatment; I never even expected to get admitted.
They pumped me full of steroids, I received albuterol every 3 hours, and my brain starting giving way. Have you ever felt your brain split or shatter? It starts off slowly, like the front end of the Titanic cracking, but once it goes, the ship sinks quickly. The glacier, in my case, was when my bladder stopped functioning. It was then I experienced my first undeniable panic attack. I couldn’t piss, it was 5AM, and I was crying in discomfort. I felt like a toddler at an apple juice party with no potty in sight. I was privied to the delightful experience of a catheter. Can I say again – I went for an albuterol treatment. I called my mother hysterical, stuttering and stammering about the catheter. I was shaking; I couldn’t get my thoughts to connect. Unfortunately, that feeling has become commonplace for me now, but then it was absolutely terrifying. It was as if my left brain was shouting and screaming logical statements while my right brain left the scene. It’s like hearing half sentences in an important conversation that you will be tested on later.
I couldn’t speak correctly. It was this I…I…I…I…I can’t, I can’t…I can’t piss. As my head and body jerked and flailed around violently, I was still coughing and seeing spots. My mother and husband charged in to the hospital ready to kill someone. The nurse tried to explain why a respiratory patient had a failing bladder, then accusingly turned to me and asked me why I was no longer taking my Lexapro. I somehow managed to stammer out a reminder that they, in fact, dispense my medication, and that I have asked every single time where my Lexapro was and received no answer. I reminded her that when I came to the hospital, moving was not an issue, nor was dizziness, nor was panic attacks. They did not say it, but we figured out I was going through withdrawal due to not being given my proper medication. Their justification was a tepid excuse that the Klonopan was a substitute for the Lexapro, which is like telling someone you gave them turkey as a substitute for their vegan diet. It’s just not how you do things.
Once I was discharged – more at my insistence then any clean bill of health, I was a wreck. I was treated to another ER trip due for another catheter due to my bladder, and I started having panic attacks constantly. At this point, I did not know what coping skills were, or what the hell was going on, really. That is not to say that there was never anything wrong with me before; I’ve always struggled, but I did not talk about it or deal with it. Repression was the name of my game. I was too scared of being crazy to entertain that I may not be well. I did not see a therapist, and I requested an antidepressant from my doctor, due to the fact that I was under so much stress from work, being a mom of 3, and life generally kicking my ass. Ignorantly, I had thought this little pill was going to take all the problems I refused to deal with away.
When that little pill came out of my system, coupled with the stress and trauma from the hospital, and that strange feeling of my brain breaking, I became the loser in the race against myself. For two weeks, I tried to handle everything. My doctor put me back on Lexapro and started me on Ativan to try to stabilize me. One day, my dad called me in the middle of a panic attack, and 15 minutes later, he was there to take me to the ER for the third time. At the ER, they recommended me to an inpatient facility, as my symptoms were too acute for outpatient. That’s a lovely euphemistic way of saying, I had to go to the mental hospital. For all my wordy eloquence, I can’t really paint those emotions well. It was a combination of relief and terror, somewhere between hope and despair.
I remember sitting in the chair after I was admitted, thinking, “Well, that is it. I’m crazy. I can’t hide it anymore.” I couldn’t stop sobbing. I don’t think I’ve ever felt more afraid in my life. Those feelings haven’t changed much over the years. The only thing that has changed is the woman writing this story four years later. I don’t blame the hospital for the incompetence. I blame myself. I should have known the pill I was putting in my body, the diagnosis I was being treated for, and the proper management of my symptoms. Frankly, I shouldn’t have blindly trusted any doctor or nurse, and I should have been a vocal advocate for myself. Legitimately, yeah, I am being hard on myself. I was sick as a dog, and I wasn’t thinking drug withdrawal psychosis. I didn’t even know what psychosis was. Now, we’re old friends. But that is a story for another day.
I have struggled with being medication compliant since that time. I don’t trust doctors. I don’t trust drugs. The only person I really trust with me, is me. There was a time I would never argue with my doctor as they handed pills and diagnoses out like coupons. At this point, I barely pay attention to the diagnoses I’m given. Right now, I’m bipolar, and I have a whole cocktail behind it. Previously, I have been schizoaffective disorder, atypical depression, generalized anxiety disorder, and more acronyms then you can shake your tail feather at. It doesn’t matter. What does matter is how I handle it. Psychiatrists and psychologists alike don’t seem to grasp that the patients need to live with their words. When a doctor hands a bipolar diagnosis, they are ticking boxes of symptoms in the DSM-V, they aren’t thinking of a woman stammering in her kitchen through a panic attack because she burnt her toast and forgot to pay the electric bill. They are not thinking of a woman who has to run a marathon to get her kids out the door to school on time. They are thinking of a neatly packaged symptom that matches neatly with a pill. “You need to reduce your anxiety.” Okay, so you will be picking my kids up when, exactly?
I have dealt with this for four years now. Changing diagnoses, doctors, and medications, in this perpetual march to “make me healthy”. I have dealt with confusion and fear, because I don’t always know what is going on with me. So many times I feel out of control of my body and mind. One day, I started wondering if the ocean feels in control of its waves, or if the sand feels in control of the shore. One day, I stopped caring what everyone thought about me, and I started caring about what I understood about me. One day, I stopped being the victim, and I became an educated patient and advocate. No day will I stop seeking the balance between my health and wellbeing and medications/treatment to support me. No day will I accept that I am helpless to my disease. No day will I be ashamed of “being crazy” or “having a mental illness” or whatever you want to call it. It’s as abnormal to me as my hair being curly. I’m a spinach hating Popeye – “I am what I am, and that’s all that I am”
I have seen 7 different doctors, been hospitalized 5 different times, and been on too many different med combos to count. I am going to see an 8th doctor in July, because my current doctor is not listening to me about the medications I am on. I have gained 40 pounds since April, and I have struggled with eating disorders since I was 15. Do you really think these are circumstances I’m going to abide by? In addition to the constant drowsy side effects, now I’m fighting off the urge to vomit every morsel I put in my mouth? No. “Well, one of Lithium’s side effects is weight gain.” So, you want me to treat one disorder by kicking off the other? “You seem better than the first time I saw you.” The 25 minute initial evaluation where you gave me a life altering diagnosis? (One that has been overturned 2 other times, but what do I know, I’m just the patient) I seem better in the 15 minutes you see me in the office, after I’ve spent two hours meditating, journaling, and coping with the anxiety that doesn’t want me to leave the house, because I don’t fit in my clothes, because I am depressed and I want to stay in bed, and because I know I need to continue arguing that the medication you have put me on is making everything worse, not better, but you know me better in 15 minutes than I know myself?
No. Four years ago, this all might have been accepted blindly as “well they are the doctor, what do I know?” Now, I will channel the words of our revered Reality TV Star turned President, and tell her gladly, “You’re fired.” Now, I get to shell out money out of pocket, because one lesson I’ve learned is very sadly true: if you want a psychiatrist or psychologist to help you, don’t go to the ones your insurance will pay for. The best ones don’t accept insurance. I’ll be seeing my new doctor for “At least an hour, possibly more depending on the complexity, for an introductory evaluation. Our subsequent appointments will be at least 45 minutes. I’d like to understand your symptoms as it relates to your menstrual cycle, as I know most women experience changes with their cycle, and I do not like to overmedicate hormones. From the sounds of it, you may be overmedicated, and I am concerned about the interactions.”
No one has the right to change you. No degree makes anyone qualified on you more than you. No amount of pills will change the problems if you don’t address the root. No pill will solve everything, because you need to help yourself. Those are the lessons I had to learn to fight for myself, to educate myself, and to understand myself.
Happy Anniversary to a very, very, very different woman.
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