patient advocates

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patient advocates
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    Me, Migraines and Mobility Aids

    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. #chronicillnesswarrior #PatientAdvocates #Migrainewarrior #NotAshamed

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    I Did A Thing! #PatientAdvocates

    In an effort to make it easier for others to connect with me, I created a Linktree profile. I am currently accepting new intakes for Peer-patient Counseling. As always, this is a free service, a gift of time and experience(s) that I offer to other members of the community. I cannot prescribe, but I can share information and educational materials, plus offer tips for interpreting lab results, suggest supplements, and more.

    Please feel free to share my link or QR code with anyone who might be in need of support, especially newly diagnosed folks who may be feeling a bit overwhelmed by info or worried about how to handle their own unique health challenges. I also work with people who already have a clear diagnosis, but may be looking for new ways to approach their daily care. Simple things like nutritional changes can actually have a bigger impact than many people know.

    I use an Integrative approach to managing autoimmune diseases, chronic pain syndromes & many other types of Invisible Illnesses. This includes experience with certain cancers, endocrine problems & mental health issues. Seeking a balance between allopathic medicine and natural remedies is high on my priory list. I can even help with diagnostics, in some cases, if someone has been "shuffled" from doctor to doctor, without getting real answers about what is causing their symptoms. Education is paramount when it comes to maintaining or stabilizing your health. I also have my own personal experiences with EOL matters, both in preparation for & the setting up of legal documents, such as a DPOA, particularly in the states of Washington and Texas.

    My ultimate goal is to empower patients to be equal partners in their own care, to find a semblance of Wellness again, through lifestyle modifications, and to help the patient as they help their friends & loved ones understand the impact a new or longterm diagnosis can have on a person's life.

    Solidarity. 💜

    Find me here:

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    Mental Hospital Tycoon; A Total Insult to Mental Health Patients and Professionals Alike

    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


    Patient abandonment #ethics #PatientAndDoctorExperiences #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

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    What is 1 Sentance That Saved your Life ?

    In my most recent article ( go check it out ! 😉). I share about the “ 6 Words That Saved My Life in the ICU “. I want to know . Have you had a similar experience. Without knowing . Did someone utter a phrase .. . A sentence .. That saved your life, changed your life , or changed your perspective on life ? If so , What was it? #MightyTogether #PatientAdvocates #MentalHealth #MedicalTrauma #ChronicIllness


    Talking to a neurologist #IdiopathicIntracranialHypertension #Anxiety #Aspergers #PatientAdvocates #Bipolar1Disorder #ADHD


    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?

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    My last thought was about coronavirus memes - this is just adding to it as I'm sure many of you have noticed like I have that many people (who are not at risk) don't take their health seriously or keep those at risk in mind. #CoronaVirus #ChronicIllness #PatientAdvocates #Awareness

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    Rare disease information on the internet.

    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

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    #Mightyheart #empower #AmbassadorEhlersDanlosSyndrome #AmbassadorRaredisease #Awareness #EhlersDanlosSyndrome #RareDisease #Proclamation #Biologydept #Buffalostate #PatientAdvocates

    So I was honored by the town I live in, Cheektowaga NY. I took this Picture with a #Mightyheart I got at #NORDLRL confrene. I loved your booth and I love to spread awareness SO thi is me with #Buffalostate new head of the #biology dept. We met to discuss the conference at #GlobalGenes and the Proclamation as well as Graduate School.

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