Posts Tagged ‘advocacy’

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Don'tUnderestimateMe

Radical acceptance isn’t supposed to be bitter. It is supposed to bring peace.

So, I will now continue along my path, knowing, thinking, and noticing.

I don’t know what else to call this set of emotions that have lead me to say, “I’m done.”

I am just frustrated beyond words over  being marginalized by my healthcare providers, and really, just people in general.

I’m tired of the fight getting me nowhere.

I recently read something by Australian historian and author. Tim Flannery (The Eternal Frontier) that made me take serious pause: one person cannot change mass behavior that they believe to be inappropriate or immoral. By bringing such things to the attention of the majority, it creates hostility against the person. So, in other words, accept the bad/poor/inappropriate behavior and keep quiet. Accept it. That’s just the way it is. Morality never wins – the mob wins. (this is a paraphrase, not quote)

I have been unsuccessful at creating or joining a mob that can truly make a difference.

So, I am DONE.

Done doing my due diligence just to be ridiculed and then, ignored- not treated – told that I should “get used to getting older.”

Done doing this – what ever  you want to call “this.” Trying to gain acceptance as a human being, trying to get someone to care enough to try and help me, trying to teach people to advocate for themselves as I have tried to do… Maybe not forever, but for now, I am DONE.

WHY?

Maybe this is the straw that broke this camel’s back: I don’t think that the things that are going on with me now (like a sudden 10 lb weight gain; almost daily, debilitating migraines; hair loss; very easy bruising) are something I should just “get used to.” (Thanks for that sage advice, Doc.)  Just because simple blood tests show me as “normal” – isn’t it quite obvious things are far from normal? Example: I have had a bone infection for at least 4 months – it was discovered on a routine dental X-ray 2 weeks ago – but – it HAD been noted on an MRI in April. But, did ANYONE bother to address it – NO. I asked about the radiologists comment and was told not to worry. Who’s worrying? I just want such weirdness to addressed. Or should I just “radically accept” my conditions? (no, I’m not leaning towards the “church” of Mary Baker Eddy!)

Now, I am working on radically accepting that I am not going to get the care, attention, treatment, testing, concern and compassion others may be fortunate enough to get.

[If you are reading this, and are getting these things I listed in the previous sentence, please be joyous. Seriously.]

I am also trying to radically accept that my absence from the fight will not make one bit of difference on this overcrowded, selfish planet.

Now…I am DONE.

After much contemplation, many rough responses from the hope-and-unicorns crowd, and watching yet another TED talk ( if you don’t know what TED Talks are – Google it!) given by ePatient Dave, I’ve decided that I want to shift my focus away from whining and ACTIVELY work change the face of health care as we know it today. I want to make a real difference.

I want to call doctors on their sarcastic attitudes about so-called “cyberchondriacs” and hold them responsible for dismissing patients as “horses” that think they are “zebras.” (We are are familiar with that quote.)

Let me fill you in on a brief example of 2 exchanges I had on an iPhone app called “HealthTap” that makes bold claims in their Mission Statement such as: “We’re dedicated to improving people’s health and well-being by providing our users personalized health information and free online and mobile answers from thousands of the best physicians in the U.S. Our goal is to help people better understand health, make more informed health decisions and find the very best doctors.”

(REALLY. Bullshit, not in my experience with any if their so-called experts.)

We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by demonstrating their expertise online.

We believe that everyone has the right to free, reliable, and independent health information. We also believe that the most trustworthy health information comes from medical experts and that the best health decisions take into account unbiased expert knowledge, community insights and relevant data.

We’ve created HealthTap to reflect these beliefs, and to be available to you, anytime and anywhere.

Again – BULLSHIT,

I want to tell these so-called expert doctors that tell me things such as. “There’s an old saying in medicine that ‘common things happen commonly. The corollary to that wisdom is that ‘rare things happen rarely.’ Baroreceptor failure (a condition that has been postulated by my docs IRL that I MAY have.) is so rare, that you can forget about it. look for a different explanation .’
Wow. Really??? Telling a person to just forget about a diagnosis!!! bold move. Essentially telling a patient that they couldn’t possibly have anything rare (especially after providing this service with my entire recent health (or lack thereof) history. Not only ballsy, but incredibly disrespectful truly and downright inappropriate.
Same doc (lucky freaking me) – different query: I have bizarre BP readings. Very. I have a well-documented autonomic disorder, that primarily effects BP regulation and responses in the body. I write this service about a very strange reading I just got – just my luck – same snarky doc answers my question. This time, his words of cluelessness were insulting AND stupid: “it isn’t physiologically (possible) to have pulse pressures of 10-20.i doubt those pressures are accurate and that your cuff is mis-sizedor that your device is inaccurate, mist likely the former. A common cause of this is a large arm. Is your arm large?”
Keeping in mind that the docs that answer these queries have access to ALL of our health info, from age to weight (hint hint) and all of our most recent diagnosis, data and medications.
And this guy not only told me I don’t know how to take my BP, I don’t know how to accurately record my BP, but I’m also FAT,
This is just a tiny example of the poor quality, “allegedly” cutting edge medical help available me via an app on our awesome iPhones. I have had several responses from docs just as rude and horrible – I just cannot believe that people are using this app instead of going to valid, genuine medical websites (not WebMD or “support sites” sprouted like weeds on Facebook, for example) but sites like the Mayo, Medscape, NEJM, MedWhat, UpToDate, etc.
I want to have an effect on sites like this HealthTap – they make bold claims, then treat educated people in distress like dolts.
I have more stellar examples of rudeness and incompetence. But I won’t bore you,

I want to change things for patients. I want to make THEM the respected person in the doctor-patient relationship, I want patients to be keenly listened to as if they were the most important person in that doctors’ office.
Because they are.

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Today’s assignment: create a “must follow” list for our community.

Living With Bob – the best-written, honest and realistic look Ito the life of a wonderful gal with autonomic systems disorders, and the many weird comorbidities that come along with a true ANS disorder. Educational, humorous, poignant, unembellished down-to-earth truths,

Mental Illness Happy Hour – Fantastic weekly podcast and website and hilarious Twitter feed the explores the lives of those with “diagnoses” that live and function in out society quite well. As the het, Paul Gilmartin put it,m “it’s not a substitute for professional counseling – it more like a waiting room that doesn’t suck! Creatives (comedians, actors, artists, Gulf War vets and listeners are the weekly guests. You will know many of them, and want to know those those that are “new to you.” Website, mentalpod.com offers lots of surveys that you can take to anonymously share all those secrets, shames, struggles and frustrations. A forum to connect with other listeners is also offered. The Mental Pod combo is the best thing to happen to mental Heath since SSRIS!

WEGO Health Facebook Page: a home or health advocates – sponsors blogging challenges, offers round table discussions and provides info about upcoming events in which advocates are encouraged to attend and participate.

Day25

NOTE:  I got LOADS of negativity about this post. If you don’t want to hear the truth, don’t read this post. I don’t embellish, beat-around-the-bush, or fill my blogs with platitudes. I’m not just someone that has a medical issue that wants to blog about it. I’ve got loads of research experience and over 25 years of medical advocacy experience. I’ve been to senators’ offices to fight for patients – and I know what is necessary to make change.

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This is a simple one. IMHO.

First, you must decide if you ARE a health activist, and actually trying to educate the public or medical “professionals,” or you are simply blogging your sunny thoughts about coping with chronic illnesses.

If it’s the former, and you post FACTS from cogent sources and not from Facebook blather or patient-created support sites, use only peer-reviewed journal articles, publications from respected medical sources and medical texts –  you ARE a medical activist.

If it’s the latter, you are NOT a medical activist. You are simply writing a public diary. Which is fine – some people like that stuff.

It is very obvious to me who has true and relevant information about their disorders. I published a plea yesterday asking for the names of doctors’ from people that are diagnosed with forms of autonomic system disorders so that I could create a “go-to” page for people looking for credible doctors that are familiar with the many forms of “dysautonomia” …and I received two – TWO -responses!!! That’s IT??

If you see a doctor that is giving you awesome care for your disorder – why wouldn’t YOU want to tell others suffering with similar symptoms where to go for help??? If this doctor has valid information he is sharing with you and is helping you live your life in a more productive manner than your would without his or her assistance – wouldn’t you, as a “medical activist” want to help others? I would gladly do so, and therefore, I have been sharing information about top notch docs since the early 1990’s.

Likewise, if you had negative experiences with doctors that did NOT provide you with good care or provided you with information that was NOT correct – wouldn’t you want to warn others so they didn’t waste time, money and emotional agony going seeing doctors that are not helpful? I sure as heck would, and I do.

So, there.

YMMV.

Day 11

What is my favorite health-related app on my iPhone?? There are several I like, but none that I enjoy as much as the Superbetter I am a podcast junkie. I listen to about 15 different podcasts on a regular basis, mostly at night because I have some bizarre type of sleep disorder that refuses to let me sleep at night. So I listen and learn a lot about topics that interest me, such as advances in medicine and anything science-y, including a fun series by the Stuff You You Should Know folks called “Stuff to Blow Your Mind” and another, “Stuff Your Mom Never Told You.” One of the podcasts referred to a TED Talk given by a woman that was an online game designer that had suffered a serious concussion, and how it changed her life. So, of course, I downloaded it and listened. Jane McGonigal is the game designer. In her 17 min TEDTalk, Jane insightfully describes how the principles that make a successful game, such as World of Warcraft, can be applied to reality to address our life and health challenges. Her inspiration was the difficult time she had recovering from her concussion, which had rendered her unable to work and restricted to bed rest, which ultimately led to depression and suicidal thoughts. The “game” she designed in response to the challenges she was facing she names “Superbetter,” and uses features like Quests, Power-Ups, battling Bad Guys, and teaming up with real-life Allies to help attack tiny portions of the things that challenge us and effect our social, emotional and physical health. Every portion of the game is customizable to your unique challenge, or you can choose to use the prepared Power Packs that are designed to target things like anxiety, overeating, insomnia and social phobias/isolation. Each Quest, Power-Up and Bad Guy is expertly backed up with cogent scientific research by Jane’s amazing research team. Points are awarded for completion of these tasks, for checking in with Allies, and taking other steps to your “Epic Win.” (OK, I’ll share my Epic Win with you: finding strength to be my own healthcare advocate; to try and find GOOD reasons to stick around; to make real connections so I don’t feel abandoned.) There are 2 parts to the game – a smartphone portion (that is a free download) and a web-based portion, at Superbetter.com, where you can connect with others playing the game in forums, and access your “Secret Lab” where the app tracks your progress during the game. Superbetter My favorite part of the game is that through customization, it has allowed me to create specific prints that help me do things on a daily basis that make me feel like I am more of a human being than I felt before I started Superbetter. Another fun part was being able to create a “Secret Identity,” an alter ego or avatar, that gives us strength when we lack the motivation, desire or willpower ourselves. You can “play” the game completely anonymously, which some feel the need to do, while others go strictly by their Alter Ego’s name, and others use their screen name chosen for the game. A few use their real names. I use a blend of faux and real, depending on who I am talking with. This app is sheer genius. I e got degrees in sociology, psychology and biology and lemme tell ya – this app brats the pants off of any self-help or counseling program I’ve EVER been a part of in my 49 years!!! Listen to the TEDTalk and find out why Superbetter is awesome and how it can really change your life – realistically!

My bad.
This topic was my idea and I dropped the ball.
When I made my recommendations to WEGO Health for blog topics, I was thrilled about this new resource I had found.
CarePages is this really awesome resource that allows patients and caregivers to create FREE web pages that are accessible only to those that the page creator allows. The purpose of CarePages is to let patients connect with family and friends during a health challenge, and helps patients to build a support circle. You can add links to credible information about your condition, create a blog about your journey, and allow loved ones to leave comments for you. You can also connect with others via the forums on CarePages that have similar conditions and learn what works – and doesn’t work – for others.
So – what at are you waiting for?? Head on over and create your own CarePage!!!

photoOver the course of my careers, education and being a medical oddity, I learned that it is not only important to know where to look for information, but how to look for it as well. I am grateful that my education started long before the Internet was even a “thing,” which is another way of saying I learned how to research using those things called books, periodical indices and encyclopedias. I think that my experience with tangible materials has made the info mining process on the web so natural for me. It is often not so much the tool we use, but the search terms we choose that lead us to the information we desire.
The absolute fist place I start my search for information on any issue is Google Scholar. This is simply Google that focuses the search results in professional literature, journals, and texts. Once I locate a result that is on topic and that is accessible (sadly, some results can be subscription only), I go to the references for additional information. There you can find many more topically appropriate resources. Often, you can learn additional search terms that are either “terms of art” or the fancy, scientific ways of referring to what you are searching for. Then, you can use these terms to search Scholar again, or go onto other sources of information. (Example: “dysautonomia” is not a term frequently used in US literature. The terms “autonomic nervous system dysfunction” or “autonomic disorder” will return more professional results in most searches.)
Additional sources that are excellent for gathering general info and details on diagnostics are the
Mayo Clinic and Medscape. I highly recommend registering for Medscape’s educational updates in your area of interest (such as Neurology and Cardiology, if you want to stay updated on autonomic system stuff.) There is a great educational update service on the Mayo site as well, called “Hot Topics.” You will have to register as a “medical professional” for both, but I’m sure you can figure that out…
There are many sites I have found helpful for each of my “medical challenges.” It would be far too overwhelming to list all of them here. I located all of my most helpful sites through the three sites I listed above. I have found excellent treating physicians and surgeons via these sources simply by noting the research principals for the articles that were specifically “on point.” If possible, you most definitely want to have a treating physician in ANY field to be involved in research at some point in their careers.
These guidelines can be applied to any medical issue. I hope that you find this info helpful to jump- starting the creation of your own personal list of resources.