patient advocates

Hi Mighty community. I hope all are having a nice start to 2023. I have an article that discusses my migraine diagnosis, ruling out other conditions and aids that have helped me over time. I hope that you will take the time to read it. Feel free to comment and share if you can relate to anything.

migraine.com/living-migraine/mobility-aids-shame #chronicillnesswarrior #PatientAdvocates #Migrainewarrior #NotAshamed

Who doesn't love a good tycoon style game? You get to manage a business that you'd otherwise never get to manage. You get to exert some control over something in the midst of chronic illnesses that constantly threaten your grasp of controlling the circumstances of your own life. It's an escape. Sometimes medical based tycoon style games like Project Hospital, for instance, are quite therapeutic as you help find diagnosis for patients and build a facility that you wish could be accessible to you somewhere. It puts you in a place of figuring out a diagnosis when your own is so complex that even the best doctors are still going "heck if I know!". It's sort of a break from your own illness firna moment and instead of the constant endless loops you face with your illness, you find yourself facing someone else's but there's a linear process to discovering the source of the problem. If life only worked that way all the time!

But then comes the misuse of the format. Recently I was on the Play Store when I came across a game that says "build your own mental hospital". From the get go it sounded cringy to me. However, a game in which you create a mental health facility is not at all a bad idea. It would empower patients to create the types of environments we want to really see and possibly give insight to professionals about what may really be beneficial for us and helpful if it let us design treatments etc. But this is not that game. It depicts stereotypes and not just stereotypes, but the blatant mistreatment of those with mental illness and further stigmatizes them. The game features restraints holding people unwiingly down onto beds, lock ups, beatings, patients escaping and stealing trucks on a joyride, features patients reminiscent of a band of stereotypical mocks of absolutely inaccurate depictions of mental health conditions, treatments that not even some of the worst former institutions would utilize, and altogether is a dangerous perpetuation of a stigma that still results in needless loss of life for those suffering from mental health conditions because of stereotypes like this that make people afraid of seeking mental health treatment. This depiction of a mental hospital is downright irresponsible, insulting (both to patients and mental health professionals alike), and quite dangerous should a child be exposed to this and think this is the standard treatment of the mentally ill in our society or that people with mental health conditions are to be feared, treated as inferior, or abused and it's all just par for the course, fun and games, etc. Perhaps the most disturbing overtone is that the patients deserve what they have coming.

What's your take?
Is it just a harmless game poking fun at the most serious parts of life to take the edge off? Or is this a problematic, dangerous depiction that should be removed from the Google Play app store?

I tend to think the later is my personal view.
#MentalHealth #Depression #CPTSD #PTSD #VideoGames #App #appreview #Anxiety #ObsessiveCompulsiveDisorder #LearningDisabilities #PatientAdvocates

Who to Contact when hospice says they’re coming to evaluate while patient organs maybe failing and never show up. Hospice said they were coming and just never showed up. Told us they were doing us charity. I don’t even know how to fathom or handle this#neglect

#MyalgicEncephalomyelitis

So I finally got a referral to see a neurologist. I think...I have to double check with my eye doctor to make sure it’s gone through.

Based on the symptoms, I’m fairly certain I developed ME and/or CFS after I had viral meningitis last year. It also makes sense with the IIH I have been diagnosed with (ironically a month before the meningitis). I thought the IIH symptoms were caused by severe migraines (which run in the family, anxiety&stress, and malnutrition. I finally went to the doctor about it after I almost passed out at work.

I think I had IIH for several years previously, but that not the point.

How do I talk to the neurologist about my suspicions and personal history?

One of my pet hates is the the internet meme "Do not confuse my medical degree with your Google / Internet search."

Thankfully I have never physically met a doctor who has tried this on me but I have heard stories from fellow patients where similar thoughts have been expressed.

Patient advocates can help fellow patients with internet searching to allow patients to ask their doctors informed and relevant questions at appointments.

With any rare condition it should be a two way process when doctor and patient can learn about the condition together.

The idea that "doctor knows best" is not always true.

#RareDisease #puberty #PatientAdvocates
#KallmannSyndrome  #testosterone