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Sometimes we really want to get better and the world seems to say no.

I was initially diagnosed with Bipolar 2, this is not a set in stone diagnosis, according to my former psychiatrist.

I went on 4 years taking meds. It did help, but my treatment begun right at the start of the pandemic. So, I didn't do the follow ups. I still took the initial dosage for years, regularly. At that time I also found a nice therapist, but had to put it on hold and by the time pandemic was over, she was retired. It was a pity because I really liked her.

The meds help me a lot, but I think I needed to work into the dosage. By the end I was having suicidal thoughts.

I divide suicidal thought between emotional and rational. When it is driven by emotion it will be that desperate cry of pain inside you and outside you. When rational it is more "well, this is my ultimate destiny, it is just a matter of time, this life is just not for me in practical terms." together with researching methods and even making a plan.

By the end of the year I had an opportunity to move to a bigger city, to live right near one of the worlds most famous urban beaches and most beautiful too. By that prospective, I thought meds were already not working that well, so I might start new. I know, it is classical stuff we always want to see how is life outside medication at some point.

So, I did stop it, it has been more than two months. There was energy in me to have a new approach, but of course change is never easy. It starts with the surrounding people who always seem to make it difficult to change, to apply change. The move also brought on practical stuff, like, I wanted to cook my own healthy meals, but till today I cant use the stove because I need to make changes in the kitchen and it costs money.

I am exercising, taking cold showers to bust energy, I'm trying to have a routine, I desperately need a routine, I'm trying to stay away of bad habits. The only way I now how to do it is by imposing myself a military way of living. I have to wake by 6am, have I slept well or not, no options, if I have options I will be all day in bed. In so it goes own to another aspects of my life.

This takes a toll in me, but the other option is like a said: I will do nothing, I've been doing nothing for years and this is also the path of self destruction. My life is anhedonia. Everything ends up meaning nothing to me.

Now, I want to go back to meds, not to using them as an escape, but to help me not feeling like life means nothing from the moment I'm awake to the moment I go to sleep. Thing is, it is hard to make an appointment, I have insurance but this makes me like a second class patient, they always make private (meaning u pay for the session upfront) a priority. I don't have money right now. I don't even know I would have money for the meds right at this moment.

I learned life is hard work, there is no escape, this is proven to me over and over, but it seems so ironic that even when you really want to do the work there are always those little things to make it harder. I mean, I am so lacking of energy and now I have to fight to get a consultation, they don't have a date, they told me I should call back next week. Sure I'm trying other people, but all so slow to reply.

I am not at the stage I will really kill myself, I don't want to do that to my loved ones, but I wake up and the fantasy hits me that would be so good if I was gone, this is just a losing battle.

One part of me wants to be that success story, the one who could fight the adversities and rebuilt a new, nice life. But as it happens to many desires and dream, they start to die when you realize they are only wishful thinking.

#Bipolar2 #Depression #MentalHealth #MedicalProfessionals #SuicidalThoughts

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Thinking of all of you who are also staying alive w/ little to no help from your physicians

The way physicians are either just now catching up and learning about post-viral illnesses or sticking to their tried and true path of doing nothing and/or causing harm is unethical, illegal, and shameful.

They're failing in their duty to care.

So sick of this shit.

Day 61 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #Disability #MedicalProfessionals

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A Thought About Mental Health Professionals

#I have been living with schizophrenia for almost 40 years. I have found that many people have the common misconception that just because someone is a mental health professional, they are able to speak with authority on any mental health condition. This is like saying that because someone is an MD he can function as a general practitioner one day, a brain surgeon the next, perform open heart surgery the following day and just for good measure do a liver transplant the next. Dealing with psychosis requires a special skill set that most mental health professionals simply don't have. In their ignorance many of them think that they are qualified to deal with psychosis simply because they are mental health professionals and psychosis is a mental health issue.#MentalHealth #Psychosis #BipolarDisorder #SchizoaffectiveDisorder #Schizophrenia #MedicalProfessionals

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Trading My White Coat for a Hospital Gown

As a medical professional, I have never felt particular enthusiasm for wearing a white coat. It creates an impervious barricade; demarking the clear positions of a pure, healthy provider, and an ill, tarnished patient. Interestingly, doctors exclusively wore black until the late 1800’s to early 1900’s. These dark garments signified formality, as well as an elevated societal status. During these times seeking the assistance of a doctor implied seriousness, and was often a precursor to mourning. Additionally, the black cloth hid stains from a frequently hostile medical environment. As advances in microbiology evolved, similarly antiseptic standards emerged, which would forever alter the field of medicine. Doctors were expected to maintain proper hygiene, which could be accounted for with a pristine white coat. In doing so, this universal uniform of the profession quickly elevated the image of those who donned it.

The ceremonials of being presented with a white coat are much more profound than the action of placing any ordinary cotton, polyester blended jacket over the shoulders. Once the upper appendages are slipped into the sleeves, is the person instantly transformed into a competent, and ethical healthcare provider? Comparable to the comics when Peter Parker dons his iconic suit, alchemizing into his alter ego, Spider-Man. Traditionally, students are presented with a white coat in a ceremonial fashion which, signifies entrance into the profession of medicine. The formality being completed with the reciting of the famous Hippocratic Oath. This snow-colored covering symbolizes professionalism, honor, authority, and purity. Even when not wearing the coat, providers are expected to assume proper behaviors that represent this article of clothing at all times. As I was proudly robed with achromatic attire during my own traditional ritual, I failed to consider the future possibility that I myself might actually trade this iconic covering for more patient appropriate garb.

While earning a white coat clearly doesn’t protect a provider from personal illness, it can create an elusive façade, otherwise deceiving those who are bestowed with its greatness. The fact that medical practitioners are subject to the same ailments as their patients, is usually not evident until they themselves fall ill. I was one of those providers before I got sick. Although, I learned quickly after stumbling in and out of autoimmune flares since age thirty-seven with a disease that the medical community rarely affords attention to. Sjögren’s is the second most common autoimmune disorder, however, it remains the red-headed stepchild of such ailments. Concurrently, I began a battle with endometriosis, another misunderstood and underappreciated disease, which ultimately took six long years to officially diagnose. Infiltrating into my white coat, I secretly hoped it would obscure my own medical impurities. Was I trying to convince myself, along with others, that nothing was wrong? I essentially used the most virtuous of symbols in medicine to censor such darkness. I am surprised the great Greek physician himself didn’t strike me down for smudging such an honorable emblem. Apparently, my time to maintain the charade of “healthy” provider came to an end, as I had effectively traded my white coat for a less prestigious garment, a patient hospital gown.

As I found myself lying on a gurney, the other side of the metal rail staring me in the face; my visual field was flooded with sensory input of a very different vista. Medical practitioners have an obligatory responsibility to maintain good health, and those who falter encounter unexpected contempt. The stigma of sickness is unbiased, therefore impartial to all patients, whether medically educated or not. Illness is viewed as weakness, and most institutions neglect to teach students about the vulnerable patient perspective. Failure to reveal the contrasting viewpoints of treating a patient versus treating a disease result in the dehumanization of mortal beings. It seems the empathetic side of medicine is often left off medical education curriculum, and the role of patient is quite challenging to comprehend without actually becoming one.

The fragility of life, and ultimate mortality that us medical providers attempt to evade must be confronted head-on. I finally asked myself, what exactly is the function of a patient? Does it really entail complete passivity? It certainly represents exemplification of exposure, and therefore unmistakably authentic vulnerability. Extricating the dual sides of myself, both provider and patient is more than just a problematic task, but an inconceivable one. Whether enveloped in a stiff white coat or flimsy patient gown, we all inevitably must face our own fate.

#sjogrens #Endometriosis #MightyTogether #MedicalProfessionals

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Focus #Depression #Hope #Anxiety #Relationships #FamilyAndFriends #MedicalProfessionals #MentalHealth

Last November I came within 8 hours of having my leg amputated and 24 hours away from dying. This incident could have been avoided if I had received a correct diagnosis at a private hospital. In Australia private hospitals are considered the gold standard of medical care.

Fortunately my local doctor picked up the error and sent me straight to a large public hospital. After emergency surgery that night I was out of danger but the next morning I lost conciousness and code blue was instigated and then it was into theatre for another surgery.

After lodging a formal complaint the private hospital eventually responded and took full responsibility for their multiple errors and also the doctors attempts to alter and delete my hospital records.

I offered to the hospital if they made a 5k donation to an orphanage I am involved in I would not launch a civil lawsuit against them. Well they have delayed, deflected and avoided making the donation.

So now my lawyers will instigate a civil suit. This was a last resort. It will cost the hospital much more money than 5k. This means the orphanage will get a much bigger donation.

I didn’t want this to become a legal battle. I don’t like confrontation. However, every day when I see the long and deep scars on my leg I am reminded of how their errors have affected my life.

Sometimes you have to stand up and fight!

Do you need to stand up and fight for what is right?

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I'm new here!

Hi! My name is MikoTolstoy. I'm here as an RN struggling with my own (suspected) undiagnosed chronic illness. My health has been on a steady decline for the past 5+ years, and I am now in our early 30s, trying to find answers to get my life back on track.

I went from a young, vivacious professional with a bustling, busy, social life, who ran 3 miles per day, took trips, learned hobbies, made friends, and felt on top of the world, to someone who is still technically "young", but barely has enough energy to get out of bed, has to sit for breaks whilst making her morning coffee, and can barely do more than go to work three times per week and do the laundry.

I have previously been using all of my "spoons" at work to care for others, but I am now losing the ability to even do that - and I want to prioritize myself, my partner, our pets, and our future children. In my current state, there's no way I can possibly bring children into the world with a healthy conscience, which is what I truly want, and that genuinely breaks my heart.

I have already lost so much time passively accepting the lack of answers that I have received, and I refuse to let this undiagnosed mystery disease alter the course of my life any further.

To this point, I've received nothing but mental illness diagnoses: depression (exhaustion, achiness, heaviness), ADHD (brain fog, executive dysfunction, lack of motivation), anxiety (physical body tension, avoiding over stimulating environments, fear of "falling short" in so many ways, loss of self-esteem) & PTSD (accurate after spending two years as a COVID ICU nurse). These diagnoses may all be appropriate in their own ways, but they are not the root cause of my suffering - they are likely a secondary manifestation of whatever hitherto unknown physiological cause is resulting in my debilitating exhaustion and inability to recharge.

I want to find answers, get through this phase of my life, build a family, and get back to work using my medical background to help those who are suffering from a lack of answers and a plethora of pain - just like I have been. I love medicine, I love the people I work with, and I love watching patients get better - but answers don't come for those who don't fit neatly into western medicine's "box" of pre-established problems, diagnoses, and treatments. We are in a whole new realm when it comes to helping patients with chronic pain and chronic illness, many of whom have been neglected and medically gaslit for far too long. We, as a profession, need to do better, and I want to help myself, then turn towards helping others. My first step is coming here to learn.

#MightyTogether #Anxiety #Depression #PTSD #ADHD #Nurses #ChronicFatigue #MedicalProfessionals

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A True Story: Getting My Prescription Filled

Me: Hi Doctor's Office! My medication at the pharmacy is not the right number of doses. Can you please help?

Doctor's Office: Call insurance to check on prior auth.

Me: Hi, insurance company! Can you please help with prior auth?

Insurance: We haven't heard anything. Check with doctor.

Me: Hi, Doc! Insurance told me to check with you.

Doc: We meant that you need to call pharmacy to ask them to send us a prior authorization request.

Me: Hi, Pharmacist! Doctor said you need to send them a prior auth request for right number of doses. Can you please help?

Pharmacist: Sure, but they wrote it for the wrong number of doses.


Pharm: Yeah.

Me. Thanks.

Me again: [calls doctor. gets voice mail.] Hi! It's me again. Pharmacy said you wrote for the smaller amount. Can you please rewrite and send it over? Thanks a million!

Me: [waits patiently to see what happens next]

#MedicalProfessionals #ChronicIllness #ChronicPain #Erythromelalgia #PeripheralNeuropathy #MightyTogether #RareDisease #Anxiety #Depression #ComplexRegionalPainSyndrome #DistractMe

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Prior Authorization is Ridiculous

I was supposed to pick up my meds today, but I noticed the number of doses was not correct. I called my #MedicalProfessionals because (long story short) I thought they mistakenly wrote for the incorrect amount. Turns out, the pharmacy filled the number that the insurance company would cover, even though I've been taking this amount for months. Surprise! My "prior authorization" had run out and needed to be renewed. So, now I wait for all that to get sorted out. Hopefully. But who knows until if and when it actually happens? This entire system is incredibly frustrating.

#ChronicIllness #ChronicPain #Erythromelalgia #RareDisease #Anxiety ##Depression #ComplexRegionalPainSyndrome #MightyTogether #DistractMe #MentalHealth #ChronicFatigue

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Recovering Mightily

Hi Mighty friends! I'm recovering after my procedure yesterday. I believed it would be fine, but I was concerned about my body's CRPS response. At this point, the pain has been manageable, and that's really the best I can expect. I'm grateful for my medical team because they truly are top notch and compassionate. My wife is the absolute best. She has sacrificed so much for me over the years with all my health issues, and it's always been with understanding, intelligence, and love. I'm blessed beyond words.

Thank you to all my Mighty friends. Your encouragement and wisdom have given me strength and through the years and in this. We've all learned from our collective wisdom, and we have the chance to share it with one another here on The Mighty. Thanks again! Now it's time to rest.

#MightyTogether #ComplexRegionalPainSyndrome #ChronicPain #ChronicIllness #MedicalProfessionals #Anxiety #DistractMe #CheerMeOn

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