#for my fellow mentally ill babes <3< /div> Explore tagged Tumblr posts

[highdefhoetry]

how he cares for his mentally ill partner

cw: discussion of mental illness and symptoms, gender neutral reader, fluff

zayne immediately goes into doctor mode as soon as you tell him about your "condition". he researches your diagnosis in depth to better understand your brain and state of mind, as well as the best ways to support you. he diligently checks in on you, always asking how you're feeling and encouraging you to express what's on your mind so you don't get in the habit of bottling things up. nothing you share will ever scare him, even the more "frightening" thoughts you experience. when something's wrong, he does everything in his power to make it right, whether that's hounding your pharmacy to make sure your refills are ready or reminding you when it was time to take your medication. when you have bad mood swings or depressive episodes, he listens to you without judgment, gazing softly into your eyes with nothing but kindness in his own. if you ever lash out at him, he doesn't take it personally. he reassures you as many times as you need, even if it gets repetitive. you will always have your doctor in your corner.

rafayel is a bit confused when you first tell him about your mental illness. he doesn't understand when you say "something is wrong with your brain", because to him, your mind is perfect. he acknowledges your unique struggles, but insists that you are much more than a medical diagnosis or symptoms of an illness. you aren't broken, you aren't too much. you're his beloved, and he is determined to love every part of you, even this so-called "dark" side. he wants to know everything about the way your mind works so that he can be a better partner, whether that's learning your triggers to prevent you from having episodes or figuring out what kind of reassurance you need to feel safe with him. he may get upset sometimes when you lash out at him, but when that happens, he'll remind you that no amount of depression, anxiety, or psychosis will stop him from loving you. you will never have to fear being abandoned again.

xavier doesn't fully understand your condition, but he can relate to your feelings of anxiety and depression. having struggled with those emotions himself, he empathizes with you deeply in a way most other people can't. he never judges or blames you for lashing out; his laid back personality and gentle demeanor help ground you when you feel like you're falling apart. however, he does get upset when you hide your struggles and aren't honest with him about how you feel. you can trust him; you no longer have to bear such heavy burdens on your own. when he can't be there physically, he'll encourage you to self soothe by buying you bubble bath soap or sleepytime tea to relax your nervous system. when he is around and you happen to have an episode, he holds you until the tears subside, wiping them from your cheeks after you've finished crying against his chest. he hates seeing you this way, so he'll do anything to ease some of your pain.

[lovelyparkers]

sickly lovely cuddles

summary: peter visits you in the hospital! writing this for my fellow sick kids out there bc i'm in the hospital a lot and need this. to any of my chronically ill babes out there, i love u, keep fighting! and i love everyone!

warnings: hospitals, mentions of blood and needles, gtubes, ox tubes, overall fluff 1.2k+ words

peter was currently in the elevator headed to your floor in a NYC children's hospital. it was a bit far from his apartment in queens, but he would go miles to see you, especially when you were sicker than normal.

he carried a bouquet of fake flowers he got from a craft shop, because he knew real ones affected your allergies and ability to breathe. he wanted you to be happy and see that beautiful smile of yours, even if it was from fake flowers. and he even stopped in the cafeteria to get you and him cups of hot chocolate, a great replacement for your beloved coffee you oh so missed. (yes, us heart failure patients cannot even have decaf coffee! ever since my several heart disease diagnosis, i have left coffee behind and was given a hot chocolate replacement)

once he got off the elevator, he smiled, saying hi to the nurses at the nurse station and heading to your room. peter was obviously a frequented visitor and many nurses and a few doctors knew him by name.

upon reaching your door, he looked in the window to see you laying in bed watching tv. you had comfy pyjamas on and spider-man socks peter got you a few weeks ago. you had bags under your eyes and bruises on your arms from needle upon needle and IVs. you also had a grey beanie on, one that was peter's that he left here accidentally. it looked great on you.

he tapped the door with his foot to get your attention. you turned your head over slowly, expecting your nurse, but immediately peeled up when you saw peter. you smiled and waved for him to come in. he pushed the door open and set the flowers and hot cocoa on your tray table. (bruh i've run a tray table over my foot ONE TOO MANY TIMES)

"hi y/n/n," he said, calling you your favorite nickname.

"hi peter!" you said, reaching out to hug him.

he embraced you in a long and warm hug before smiling and motioned to your table, "i got you some goodies!"

"ooo what did ya get me?"

he picked up the fake flowers first, handing the neat bouquet to you.

"they are fake of course, because, ya know," he motioned to your nasal cannula, "your allergies make you breathe bad."

you laughed, adjusting the tube behind your ear, "yes, yes they do."

"andddd," he began before picking up the hot cocoa, "hot cocoa!"

"yay! gimme!"

he handed you a cup, brushing your fingers in the process.

"thank you peter," you said before taking a sip, "gosh this hospital hot chocolate hits different."

"of course, anything for you."

you smiled, both sipping your drinks.

"so, i'm gonna ask the dreaded question because that's who i am, how are you feeling today? physically? mentally? emotionally?"

you sighed, "well i had severe hypotension at 2 am and have been awake since, getting filled with meds while almost passing out isn't fun. oh and my iv is being annoying and keeps getting in the way as usual."

you pointed to the sticker and the long tube that was all over your room.

"geez i'm sorry," peter said sincerely.

"but hey," you lifted up your shirt a little bit to show your stomach, "g tube is removed!"

"yay!" peter literally screamed causing you to laugh. he knew how much you hated that darn g tube.

"but mentally and emotionally i'm doing...okay. better now that you're here."

"i'm glad," he smiled.

you took a big gulp of your steaming cocoa then started having a coughing attack because sometimes you forget to breathe when drinking.

peter stood up, rubbing your back, "you okay?"

you finished coughing and cleared your throat, giving him a thumbs up.

"yes now get in bed and cuddle with me," you demanded and adjusted the bed to yours and his liking.

"okay."

peter crawled into bed with you after kicking off his sneakers.

"watch out for my oxygen, don't wanna sit on it and make me stop breathing."

"oh my gosh," peter said shocked, he was always careful, "dont say stuff like that! you're concerning me."

you laughed, "i'm joking i'm joking! it wasn't even near your butt anyways."

you cuddled up into peter's side and watched tv together for awhile. he eventually put his arm around you which caused your heart rate to soar, sending a loud sound from your monitor and in game your nurse.

"oh gosh," you groaned.

"you okay y/n-" your nurse asked before seeing you and peter, "ooo sorry kids, hi peter."

"hi meg."

"your heart rate went up, just checking in."

"i'm fine meg, thanks," you said blushing and gesturing over to peter cuddled up with you.

"ah, i see. call me if you need me."

you waved.

peter spent the rest of the day with you, migrating from your room to the craft area, to the outside lookout. he pushed you around in a wheelchair when you felt too tired or weak. he fixed your sweater when it got caught around a tube or two. he laughed with you. and he hugged you. a lot. it seemed like stuff someone who loved you did, not just a best friend. you wondered if he liked you back. but how could he like a sick kid? you were gonna be in the hospital for awhile. he couldn't get used to that.

but oh, how he could and would. because he loved you. sick kid or not.

time was ticking towards ten pm. the time they usually kicked peter out even though visiting hours ended at eight pm. he rubbed your arm and fixed your beanie before getting out of bed.

you grabbed onto his arm, "stay?"

peter sighed and smiled sadly, "you know i cant. they kick me out at ten."

"lemme just ask meg, she won't mind if-"

"y/n, it's okay. i'll be back first thing in the morning."

"you will?"

"of course i will," he smiled, causing you to grin.

you yawned sleepily. you only stayed up this late when peter was here. usually you'd be out like a light by 7:30 or 8. but you managed when he was around.

you were still holding his hand at this point, his thumb rubbing across yours.

"love you," you whispered.

"i love you too," he whispered back.

he hesitated, then kissed you softly on the cheek.

"see you in the morning y/n/n."

"see you, pete."

he let go of your hand walking to the door before using some hand sanitizer and smiling at you.

"bye."

you smiled at him, blushing, while he left. he closed the door behind him. he peeked thru the little window on the door and blew you a kiss. you caught it and laughed. he laughed too. you waved again, and he walked away.

minutes later, you were out like a light, dreaming about that boy.

meanwhile, peter was on the phone with may, "yeah i'm on my way home...i'll be careful...ha yeah, yeah i do. i really love her."

hi guys hope u enjoyed! even my non sick ones. hope you're all healthy and happy. i love u all. know i'm here for u and don't hesitate to dm me if u need anything <3 love, your fave spoonie, juli

[twoticky]

pls continue to talk abt books ! im Mentally Ill and thus incapable of reading during these trying times so im living vicariously thru u. house of leaves sounds like smth i wouldve read tbh, and mayhaps i will when i can

anon im actually going 2 marry you!! im bad at being consistent with things but ill try to upload more reviews bc i love 2 share art like. more than anything. hope ur doin well in these Times we're having, as a fellow mentally ill bitch i kno how it can be! take care of urself first n remember productivity is a capitalist lie <3

i do want to tell u about one of my favorite books of like ever which is we have always lived in the castle by shirley jackson. basically, the blackwoods are this rich new england family who live in a huge house (the "castle") until all except three of them are ~mysteriously poisoned~ at dinner. the book is set several years after the deaths of nearly the whole family, and it's hard for me to explain much more than that -- it's not really a mystery, and a lot of the plot revolves around the resentment the people of the villages have for the blackwoods, since they think constance, the oldest sister, poisoned her family. the book is really... dark and funny and delightful and it has one of my absolute favorite protagonists -- merricat blackwood, out there representing the weird and scary little girls we used to be. plus she's like. super neurodivergent coded and you can fight me on that. since it's shirley jackson it's a super like... complex n layered book with a lot of readings but i don't really have the braincells for that rn except to say the class dynamics are super super complicated and based on shirley jackson's own experiences in a lot of way.

so in conclusion if ur goth angry n used to make "soup" out of sticks as a kid this is the book for u babe <3

[jesseneufeld]

2018 Top 10 Lifetime Achievement Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

In the Fall of 2018, we presented 16 WEGO Health Awards to Patient Leaders who exemplify excellence. To continue the celebration and to recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

WEGO Health Lifetime Achievement Award: Each year we come across Patient Leaders who continue to rock the health world. These Patient leaders are true stars who continue to shine and don’t fit into just one category. Let’s face it, they’ve done it ALL!

These Top 10 Lifetime Achievement Patient Leaders are the ultimate #PatientLeader role models: 

    Natalie Y. Beavers

Epilepsy Patient Leader

Facebook | Twitter | Instagram

“I’ve survived epilepsy for over 35 years now and all I want to do is support and advocate for the many lives affected with this severe brain disorder. I came up with the idea to start a charity to support the many lives affected by epilepsy when I was hospitalized during my brain surgeries in 2008. Angels Of Epilepsy Inc. is a nonprofit 501(c)(3) charity and advocacy that provide the needs for survivors and their families. We provide gifts and supplies to patients that are hospitalized. As well as assistance with patients that can’t afford their medications and provide transportation for those unable to drive. I’ve also created “The Seizure Diary” that has now made it to 7 countries.” Connect with the 2018 Lifetime Achievement winner.

    Barbara Jacoby

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

“I am a 2x breast cancer survivor who was given a course of treatment by my oncologist that was determined by a set of statistics based upon other patients of the same age and the same type and stage of cancer. This didn’t seem right so I requested a referral to a 2nd oncologist who tested my cancer and together we set a course of treatment. From my experience, I became a patient advocate through my letlifehappen.com site with a weekly blog post for more than 10 years and a daily posting for 5 years of an “In the News” item of current cancer information, shared worldwide through social media. This is to empower patients with knowledge about all aspects of care from diagnosis to forever.” Click to learn more about Barbara.

      Tom Kindlon

Myalgic Encephalomyelitis Patient Leader

Facebook | Twitter 

“I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don’t try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behavior therapy based on scheduling increased activity…I’ve had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months.” Connect with Tom.

  Jenni Grover

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is the Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click to learn more about the Chronic Babe community.

      John M. Grohol

Mental Health Patient Leader

Facebook | Twitter

“I’ve been advocating and writing about mental health issues online since 1992, starting with the indexing of mental health support groups pre-web, and then in sharing the symptoms and treatments of mental illness on Psych Central beginning in 1995. Since that time, we’ve reached dozens of millions of people with objective, free mental health information, support groups, hundreds of blogs, and scientific screening quizzes. I won’t stop until the stigma, prejudice, and discrimination associated with mental illness has been eradicated from the world.” Learn more John and the Psych Central community.

      Sharon Waldrop

Chronic Illness Patient Leader

Facebook | Twitter

“For 25 years, I have worked to reclaim my life from chronic illnesses, with fibromyalgia (FM) being the most life-altering one. I went from being on disability to getting married, having kids, a career, and even rock climbing! This journey was not easy and there was no roadmap. I am determined to create a roadmap and support for others. One year after my FM diagnosis I started a Support Group that grew into the Fibromyalgia Assoc. of MI. Thanks to our volunteers, our group has provided support, education and advocacy to over 100,000 people since 1997. I have been honored to represent patients for PCORI, OMERACT, Cochrane and more. Patients advocating together will improve healthcare.” Follow Sharon. 

      John-Manuel Andriote

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

“I began reporting on HIV-AIDS as a journalist in 1986. I had lost two friends to AIDS by then and hysteria about the epidemic was rampant. I saw the opportunity to find personal meaning and purpose by focusing my professional work on a massively important public health crisis that was also devastating my friends and my gay community. After all I had witnessed, it was the shock of my life when I myself was diagnosed in 2005. A few months later, I came out about my diagnosis in a first-person story for the Washington Post. I had to learn to write a whole new HIV story: Mine. I choose to write it as a tale of courage and resilience, and I try to help others find and celebrate their own heroism.” Learn more about John’s advocacy journey.

    Frank Rivera

Rare Disease Patient Leader

Facebook | Twitter

“I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis receives the least amount of Government support. I have spoke at 2 Congressional briefings to help raise awareness of the disease. I have been appointed National Sarcoidosis Ambassador. I have also worked with the Rare Disease community to advocate with other org. to raise awareness and also have set up ” A Day For Rare Diseases” an event open to the public to raise awareness for all rare diseases on October 15, 2016. In August 2017 I was diagnosed with Parkinson’s. I have been downgraded from chronic to terminally ill.” Learn more about Frank’s work in the rare disease space.

      Trevis L. Gleason

Facebook | Twitter

MS Patient Leader

Trevis L. Gleason’s Life With MS Blog is one of the oldest and most respected patient blogs on the topic of MS in the world. An award-winning author and named The Most Influential Person on the web on the subject of MS by Dr. Mehmit Oz in 2015, the Life With MS blog is sought out by patients, caregivers, medical professionals and policymakers alike. Trevis is a volunteer advocate with the National MS Society (USA), MS Ireland and the MS Society of the UK. Follow Trevis. 

      Howard Chang

Psoriasis Patient Leader

Facebook | Twitter

“I’ve lived with severe skin conditions, mainly psoriasis and eczema, since childhood. I advocate for patient rights and care through the National Psoriasis Foundation as a Psocial Ambassador and Advocacy Action Network volunteer for the Western Region. I also blog, having recently celebrated a decade of writing my featured column on Everyday Health, The Itch to Beat Psoriasis, and started my website, PsoHoward.com last year. I’ve enjoyed serving on patient panels and advisory groups, including the HealtheVoices and HealtheVoices Impact Fund advisory committees.” Connect with Howard. 

    Hats off to these tremendous Patient Leaders! Their hard work and dedication are improving the lives of thousands of fellow patients. Take a moment to follow each of these role models and share the inspiration with your community. 

Are you part of our community? Make sure you’re part of the WEGO Health Patient Leader Network for all the latest opportunities! Sign up here.

The post 2018 Top 10 Lifetime Achievement Patient Leaders appeared first on WEGO Health.

2018 Top 10 Lifetime Achievement Patient Leaders published first on https://drugaddictionsrehab.tumblr.com/

[edsenger]

Top 10 Lifetime Achievement Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

In the Fall of 2018, we presented 16 WEGO Health Awards to Patient Leaders who exemplify excellence. To continue the celebration and to recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

WEGO Health Lifetime Achievement Award: Each year we come across Patient Leaders who continue to rock the health world. These Patient leaders are true stars who continue to shine and don’t fit into just one category. Let’s face it, they’ve done it ALL!

These Top 10 Lifetime Achievement Patient Leaders are the ultimate #PatientLeader role models: 

    Natalie Y. Beavers

Epilepsy Patient Leader

Facebook | Twitter | Instagram

“I’ve survived epilepsy for over 35 years now and all I want to do is support and advocate for the many lives affected with this severe brain disorder. I came up with the idea to start a charity to support the many lives affected by epilepsy when I was hospitalized during my brain surgeries in 2008. Angels Of Epilepsy Inc. is a nonprofit 501(c)(3) charity and advocacy that provide the needs for survivors and their families. We provide gifts and supplies to patients that are hospitalized. As well as assistance with patients that can’t afford their medications and provide transportation for those unable to drive. I’ve also created “The Seizure Diary” that has now made it to 7 countries.” Connect with the 2018 Lifetime Achievement winner.

    Barbara Jacoby

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

“I am a 2x breast cancer survivor who was given a course of treatment by my oncologist that was determined by a set of statistics based upon other patients of the same age and the same type and stage of cancer. This didn’t seem right so I requested a referral to a 2nd oncologist who tested my cancer and together we set a course of treatment. From my experience, I became a patient advocate through my letlifehappen.com site with a weekly blog post for more than 10 years and a daily posting for 5 years of an “In the News” item of current cancer information, shared worldwide through social media. This is to empower patients with knowledge about all aspects of care from diagnosis to forever.” Click to learn more about Barbara.

      Tom Kindlon

Rare Disease Patient Leader

Facebook | Twitter 

“I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don’t try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behavior therapy based on scheduling increased activity…I’ve had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months.” Connect with Tom.

  Jenni Grover

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is the Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click to learn more about the Chronic Babe community.

      John M. Grohol

Mental Health Patient Leader

Facebook | Twitter

“I’ve been advocating and writing about mental health issues online since 1992, starting with the indexing of mental health support groups pre-web, and then in sharing the symptoms and treatments of mental illness on Psych Central beginning in 1995. Since that time, we’ve reached dozens of millions of people with objective, free mental health information, support groups, hundreds of blogs, and scientific screening quizzes. I won’t stop until the stigma, prejudice, and discrimination associated with mental illness has been eradicated from the world.” Learn more John and the Psych Central community.

      Sharon Waldrop

Chronic Illness Patient Leader

Facebook | Twitter

“For 25 years, I have worked to reclaim my life from chronic illnesses, with fibromyalgia (FM) being the most life-altering one. I went from being on disability to getting married, having kids, a career, and even rock climbing! This journey was not easy and there was no roadmap. I am determined to create a roadmap and support for others. One year after my FM diagnosis I started a Support Group that grew into the Fibromyalgia Assoc. of MI. Thanks to our volunteers, our group has provided support, education and advocacy to over 100,000 people since 1997. I have been honored to represent patients for PCORI, OMERACT, Cochrane and more. Patients advocating together will improve healthcare.” Follow Sharon. 

      John-Manuel Andriote

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

“I began reporting on HIV-AIDS as a journalist in 1986. I had lost two friends to AIDS by then and hysteria about the epidemic was rampant. I saw the opportunity to find personal meaning and purpose by focusing my professional work on a massively important public health crisis that was also devastating my friends and my gay community. After all I had witnessed, it was the shock of my life when I myself was diagnosed in 2005. A few months later, I came out about my diagnosis in a first-person story for the Washington Post. I had to learn to write a whole new HIV story: Mine. I choose to write it as a tale of courage and resilience, and I try to help others find and celebrate their own heroism.” Learn more about John’s advocacy journey.

    Frank Rivera

Rare Disease Patient Leader

Facebook | Twitter

“I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis receives the least amount of Government support. I have spoke at 2 Congressional briefings to help raise awareness of the disease. I have been appointed National Sarcoidosis Ambassador. I have also worked with the Rare Disease community to advocate with other org. to raise awareness and also have set up ” A Day For Rare Diseases” an event open to the public to raise awareness for all rare diseases on October 15, 2016. In August 2017 I was diagnosed with Parkinson’s. I have been downgraded from chronic to terminally ill.” Learn more about Frank’s work in the rare disease space.

      Trevor L. Gleason

Facebook | Twitter

Fibromyalgia Patient Leaders

Trevis L. Gleason’s Life With MS Blog is one of the oldest and most respected patient blogs on the topic of MS in the world. An award-winning author and named The Most Influential Person on the web on the subject of MS by Dr. Mehmit Oz in 2015, the Life With MS blog is sought out by patients, caregivers, medical professionals and policymakers alike. Trevis is a volunteer advocate with the National MS Society (USA), MS Ireland and the MS Society of the UK. Follow Trevor. 

      Howard Chang

Psoriasis Patient Leader

Facebook | Twitter

“I’ve lived with severe skin conditions, mainly psoriasis and eczema, since childhood. I advocate for patient rights and care through the National Psoriasis Foundation as a Psocial Ambassador and Advocacy Action Network volunteer for the Western Region. I also blog, having recently celebrated a decade of writing my featured column on Everyday Health, The Itch to Beat Psoriasis, and started my website, PsoHoward.com last year. I’ve enjoyed serving on patient panels and advisory groups, including the HealtheVoices and HealtheVoices Impact Fund advisory committees.” Connect with Howard. 

    Hats off to these tremendous Patient Leaders! Their hard work and dedication are improving the lives of thousands of fellow patients. Take a moment to follow each of these role models and share the inspiration with your community. 

Are you part of our community? Make sure you’re part of the WEGO Health Patient Leader Network for all the latest opportunities! Sign up here.

The post Top 10 Lifetime Achievement Patient Leaders appeared first on WEGO Health.

Top 10 Lifetime Achievement Patient Leaders published first on https://brightendentalhouston.weebly.com/

[northpolenotes]

Auntieviews Volume 2 : Perryn Ojevwe – The Marshmallow Aunt

Hello there fellow Aunts and Aunties. Welcome back to Auntieviews.  In this volume, I’ll be featuring Perryn Ojevwe. Full disclosure, Perryn is not only a Mother of 3 and an Aunt to 20+ niblings, but she’s also my best friend and big sister.  Perryn and I talk about anything and everything.  In fact, we talk on the phone so much that sometimes we just stop talking altogether but remain on the phone in silence.  It’s weird, but that’s sister life for you.  Since I started my quest for fun, loving, and cool Aunts to interview, I thought, why not ask my sister?  She’s been an Aunt for a long time, she’s quite active in her niblings lives, and it’s always seemed to me that it’s come naturally to her.  It’s funny that even though we talk a lot (seriously, I can’t stress this enough), we never discussed Aunthood with one another.   I know how much she cares for her niblings because I can see all that she does for them, but I never picked her brain about how she feels about it.  So I sat her down (not really, she’s a working Mom. I had to email her A LOT!) and I got to the nitty-gritty of how she views Aunthood.  So let’s get started with The Pern AKA Pepsi, AKA Mommy, AKA Perryn’s interview.

  Background.

  Perryn was raised in Oyster Bay, New York with me and my brother, Michael.  She’s the oldest sibling of us three and also the only one with children.  She was an only child for about 4 years before my brother came along and then roughly 2 years later, I popped out.  She’ll often reflect on her glory days as an only child and freely admits to despising both my brother and me equally when we were kids.  Despite her years of disinterest and disdain, the three of us have developed a very strong bond with one another.  We went through our times of fighting as adolescents and short periods when we didn’t speak at all, but that’s just part of growing up.  As an adult, I think our lives are fuller when we’re all together.

Perryn got married in 2008 to her longtime, long-distance boyfriend Pius and moved to Maryland to be with him (jerk).  She lives there now with her husband and 3 of my niblings, Layla (8), Jayden (5) and Julian (3).  My sister and BIL love magic shows, watching America’s Got Talent, and traveling when they can.  Perryn loves reading spy novels (cause she’s an idiot – inside joke) and has a natural talent for making beautiful handmade macrame bookmarks.  She needs these little pleasures in life because she has a very serious and mentally taxing profession.  She’s a Clinical Social Worker.  I don’t understand her titled either, but it means she does therapy and provides supervision to other clinicians who work with people with mental illness, sexual behavior problems, cognitive limitation, and a host of other things.  As if that’s not tiring enough, she also works very hard raising my niblings.  She tries to keep them engaged and active as possible, constantly cooking, baking, crafting, busing them to events and activities, and when she has a free minute, throwing them all in the bathtub for a scrub down.  She gives tirelessly both professionally and personally.  And yes, that might sound like a lot of Moms, but my sister doesn’t just do this for her own children.  She does it for her nieces and nephews too, and that’s why I’ve chosen her for this installment of Auntieviews.

  The Interview.

  What is your background as an Aunt? How many do you have? How long of you been an aunt and how old were you when you first became one?

    I first became an aunt when my best friend had her first daughter twenty years ago. I was 20 years old and my friend lived in Florida while I was up in NY. There was no facetime or skype or anything so I got developed film pics in the snail mail. I would send her silly things in the mail and looked forward to a physical visit once a year or so. Then came my Goddaughter a couple years later, the second child to my friend. She had a third, a son. In 2005 my cousin, who is like a sister to me, had a baby girl. I was 28 at the time. My other bestie had two sons and one I was there for the birth- honorary moment in life. My husband’s side started calling me Auntie from the moment they met me, but I didn’t feel like I was actually their aunt until bonding with the family. In fact, the children were a huge part of my being accepted by the rest of the family. There are now 26 living grandchildren on his side. Three are my children so 23 of them call me Auntie. Whoa! It’s a lot! And we are still growing, and about to have some great nibs on the way as the older nieces and nephews enter adulthood.

    How old are your nieces/nephews now?

    They range from newborn to 30. There are chunks of them. Ages 0-3 there are 6, 4-12 brings in another14, ages 13-17 has a collection of 5 and finally, 18-30 is 5 more.

    It doesn’t matter how your niblings have come into your life, either by choice or relation, but most children refer to us as Aunts or Aunties. What do your nieces or nephews call you?

    I’m called Aunt Perryn and Auntie Perryn, depending on which side of the street they are calling from. My side- which consists of my cousin’s daughter who I consider a niece and couple of friends’ children refer to me as Aunt Perryn. My husband’s side calls me either just Auntie or Auntie Perryn. Their culture prefers them to leave off the first name of the adult, but I, quite frankly like hearing my name. I don’t want to be lost to a title, I want my individuality to come through as do I of the other Aunts and Aunties around me.

    Do you live close to your nieces and nephews or are you a long-distance aunt?

    I live far away and always have. Over the years when all these babes have been born it has been very difficult being far away, but we make up for it when we do see each other.

    How do you compare your role as a mother to your role as an aunt? If you can, describe some similarities and some differences.

  Similar in that your heart never stops for all of them. You worry, you care, you experience joy, pride, in all of them. Of course (particularly in my case) you are closer to some than others. But all of them, blood or otherwise have moved into a special place and will never be evicted (unless convicted and even then…). With my children I know they see me as an enforcer and that my attention should be on them all the time no matter what. When I see the niblings because I live far away from them all, we are usually doing something social and so my attention can and will be on them for the entire time. I will be offering some sort of craft, baking, or game to do if we are not already at some children like rec place.

  What are some of your favorite activities to do with your niblings?

    I love to create with them. I like to do group activities with them and watch the glee on their faces. I love buying things for them and doing crafts or games – mostly with the assistance of my sister; whether she introduced me to the game or is right beside me lining kids up to put Vaseline on their noses so they can attach to it a cotton ball at the other end of the room. I also like to have open conversations with the older ones about things that they may not want to discuss with just anyone. I have comfort talking about uncomfortable things with adolescents so I try to be there in that way for them. When they are little I try to give undivided attention so that they can bond with me.

  As an aunt what’s the biggest value you feel you bring to the family?

  As an Aunt the biggest value I bring is silliness. I know that is simple, but sometimes we need simple. And baked goods. One thing I bring more as an aunt than as a parent is patience. I believe that I see my children as an extension of self too much and so many expectations can be higher without even realizing it in the moment, yet niblings I see as children in need of guidance and so I provide it.

  What is one good piece of advice that you would give it to any new Aunt?

  Spoil em. Being an aunt is so rewarding. Respect the parents’ parenting, don’t undermine the parent so you can continue to have a close relationship with the nibbling.

  What is one of the biggest difficulties you’ve experienced as an Aunt? How did you overcome it if at all?

  When I was a not yet a mother, it was a big battle for me to not judge the parents of my niblings and thought I had better answers to their styles. That was difficult. I probably struggle with that now as well, but on a much smaller scale as I have, for one, matured, and for two, I have children of my own and recognize how challenging parenting and making those decisions can be.

  If you go back in time and give your younger and self a piece of advice what would it be? And why?

  Stop making rules all the time. I think I lived too rigidly in my earlier years and I would tell myself it’s not necessary to try to control everything around you. That doesn’t make you vulnerable. Things are going to happen regardless of how many barriers you put up around yourself. Deal with it as it comes and roll with positivity. I love the Cheerios commercial- “good goes around and around and around…” I use it all the time now.

  I was once told that being a Mom is all cake and being an Aunt is like icing on the cake. How do you feel about that comparison?

  Having both roles in my life I understand what the person was trying to say. However, you could say that about being a father (as they tend to take fewer responsibility roles with children), the grandparents as they have raised their children and are now there for the fun stuff, and of course the crazy uncle. I think that person was feeling overwhelmed when she said that. Jealous that she couldn’t pick up and go when she wanted, feeling frustrated because almost everyone loves icing because it is sweet and fluffy, bring happiness. But, I believe, being an aunt is what you make it. If the ingredients you combine in your aunting tole are about injecting yourself into all the layers of the nibbling then you are the cake, the filling, the icing and the scoop of ice cream. Being an aunt is no joke. The way I play it, I step in when a parent is in need or not available. Icing can’t step in for cake!

  If you had to compare your relationship as an aunt to a food what would it be and why?

  If I were to compare myself as a food to declare my aunthood it would be a marshmallow. I’m squishy and huggable, and yet, I am firm enough to not just succumb. I’m a supportive role, that’s flexible to what is needed.

  Final Thoughts.

  I hope that you enjoyed reading Perryn’s interview of Aunthood.  I realized from interviewing her that she’s been a role model for me as a Long Distant Aunt.  We can’t always live close to our nieces and nephews because life sometimes forces us to be apart.  However, that doesn’t mean that we Aunts can’t be active in their lives from far away.  Little efforts go a long way, especially through the eyes of children.  I can tell you as an outsider looking into her relationship with her niblings that she’s their go-to Aunt.  When Auntie Perryn is in town they know what to expect: FUN, laughter, and tasty treats!

I’d love to hear from more Aunts! If you’d like to share your story of Aunthood please contact me using the form below!

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Top 10 Lifetime Achievement Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

In the Fall of 2018, we presented 16 WEGO Health Awards to Patient Leaders who exemplify excellence. To continue the celebration and to recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

WEGO Health Lifetime Achievement Award: Each year we come across Patient Leaders who continue to rock the health world. These Patient leaders are true stars who continue to shine and don’t fit into just one category. Let’s face it, they’ve done it ALL!

These Top 10 Lifetime Achievement Patient Leaders are the ultimate #PatientLeader role models: 

    Natalie Y. Beavers

Epilepsy Patient Leader

Facebook | Twitter | Instagram

“I’ve survived epilepsy for over 35 years now and all I want to do is support and advocate for the many lives affected with this severe brain disorder. I came up with the idea to start a charity to support the many lives affected by epilepsy when I was hospitalized during my brain surgeries in 2008. Angels Of Epilepsy Inc. is a nonprofit 501(c)(3) charity and advocacy that provide the needs for survivors and their families. We provide gifts and supplies to patients that are hospitalized. As well as assistance with patients that can’t afford their medications and provide transportation for those unable to drive. I’ve also created “The Seizure Diary” that has now made it to 7 countries.” Connect with the 2018 Lifetime Achievement winner.

    Barbara Jacoby

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

“I am a 2x breast cancer survivor who was given a course of treatment by my oncologist that was determined by a set of statistics based upon other patients of the same age and the same type and stage of cancer. This didn’t seem right so I requested a referral to a 2nd oncologist who tested my cancer and together we set a course of treatment. From my experience, I became a patient advocate through my letlifehappen.com site with a weekly blog post for more than 10 years and a daily posting for 5 years of an “In the News” item of current cancer information, shared worldwide through social media. This is to empower patients with knowledge about all aspects of care from diagnosis to forever.” Click to learn more about Barbara.

      Tom Kindlon

Rare Disease Patient Leader

Facebook | Twitter 

“I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don’t try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behavior therapy based on scheduling increased activity…I’ve had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months.” Connect with Tom.

  Jenni Grover

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is the Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click to learn more about the Chronic Babe community.

      John M. Grohol

Mental Health Patient Leader

Facebook | Twitter

“I’ve been advocating and writing about mental health issues online since 1992, starting with the indexing of mental health support groups pre-web, and then in sharing the symptoms and treatments of mental illness on Psych Central beginning in 1995. Since that time, we’ve reached dozens of millions of people with objective, free mental health information, support groups, hundreds of blogs, and scientific screening quizzes. I won’t stop until the stigma, prejudice, and discrimination associated with mental illness has been eradicated from the world.” Learn more John and the Psych Central community.

      Sharon Waldrop

Chronic Illness Patient Leader

Facebook | Twitter

“For 25 years, I have worked to reclaim my life from chronic illnesses, with fibromyalgia (FM) being the most life-altering one. I went from being on disability to getting married, having kids, a career, and even rock climbing! This journey was not easy and there was no roadmap. I am determined to create a roadmap and support for others. One year after my FM diagnosis I started a Support Group that grew into the Fibromyalgia Assoc. of MI. Thanks to our volunteers, our group has provided support, education and advocacy to over 100,000 people since 1997. I have been honored to represent patients for PCORI, OMERACT, Cochrane and more. Patients advocating together will improve healthcare.” Follow Sharon. 

      John-Manuel Andriote

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

“I began reporting on HIV-AIDS as a journalist in 1986. I had lost two friends to AIDS by then and hysteria about the epidemic was rampant. I saw the opportunity to find personal meaning and purpose by focusing my professional work on a massively important public health crisis that was also devastating my friends and my gay community. After all I had witnessed, it was the shock of my life when I myself was diagnosed in 2005. A few months later, I came out about my diagnosis in a first-person story for the Washington Post. I had to learn to write a whole new HIV story: Mine. I choose to write it as a tale of courage and resilience, and I try to help others find and celebrate their own heroism.” Learn more about John’s advocacy journey.

    Frank Rivera

Rare Disease Patient Leader

Facebook | Twitter

“I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis receives the least amount of Government support. I have spoke at 2 Congressional briefings to help raise awareness of the disease. I have been appointed National Sarcoidosis Ambassador. I have also worked with the Rare Disease community to advocate with other org. to raise awareness and also have set up ” A Day For Rare Diseases” an event open to the public to raise awareness for all rare diseases on October 15, 2016. In August 2017 I was diagnosed with Parkinson’s. I have been downgraded from chronic to terminally ill.” Learn more about Frank’s work in the rare disease space.

      Trevor L. Gleason

Facebook | Twitter

Fibromyalgia Patient Leaders

Trevis L. Gleason’s Life With MS Blog is one of the oldest and most respected patient blogs on the topic of MS in the world. An award-winning author and named The Most Influential Person on the web on the subject of MS by Dr. Mehmit Oz in 2015, the Life With MS blog is sought out by patients, caregivers, medical professionals and policymakers alike. Trevis is a volunteer advocate with the National MS Society (USA), MS Ireland and the MS Society of the UK. Follow Trevor. 

      Howard Chang

Psoriasis Patient Leader

Facebook | Twitter

“I’ve lived with severe skin conditions, mainly psoriasis and eczema, since childhood. I advocate for patient rights and care through the National Psoriasis Foundation as a Psocial Ambassador and Advocacy Action Network volunteer for the Western Region. I also blog, having recently celebrated a decade of writing my featured column on Everyday Health, The Itch to Beat Psoriasis, and started my website, PsoHoward.com last year. I’ve enjoyed serving on patient panels and advisory groups, including the HealtheVoices and HealtheVoices Impact Fund advisory committees.” Connect with Howard. 

    Hats off to these tremendous Patient Leaders! Their hard work and dedication are improving the lives of thousands of fellow patients. Take a moment to follow each of these role models and share the inspiration with your community. 

Are you part of our community? Make sure you’re part of the WEGO Health Patient Leader Network for all the latest opportunities! Sign up here.

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