Check out the recap of this week’s #HAchat, which was co-hosted with The Tigerlily Foundation.
I have learned so much since becoming a lupus patient. I can now hold my own with almost any physician. I now speak medicalese. I know about tests, procedures, medications, therapies, and so much more. If I had only known then what I know now.
The following five things would have helped me so much if I had known them at the beginning of this journey. read more »
What’s Myasthenia Gravis you ask yourself? Well you’re not alone; Myasthenia Gravis (MG) is a rare neuromuscular, autoimmune disease. It affects the voluntary muscles in your body. It causes slurred speech, blurry or double vision, droopy eye lids, weakness in your arm and leg muscles. MG can also impair your ability to chew, swallow and breathe. Symptoms improve with rest, but return without warning. It can attack a person of any age, race, or sex.
In the past a diagnosis meant certain death, there were no treatments. Today it remains an incurable, but treatable disease. People young and old die as a result of the adverse effects MG has on the body. Because of its rarity diagnosing Myasthenia Gravis can be difficult. There are many physicians who have never seen or treated a person with MG in their practice. Presently only a handful of tests are available. They are limited to electro-diagnostics and laboratory studies. Many of us have been given a diagnosis based on clinical presentation and positive responses to medication, while others endure years waiting for a diagnosis.
For me Myasthenia Gravis Awareness Month is about putting a face to this disease. I live with a disease almost no one has heard of. People often ask “Is it like MS, or ALS?” Or they say things in a well-meaning tone like “but you don’t look sick!” or “so if you take a nap you’ll be alright?” No I don’t always look sick, and a nap will not cure my disease!!
Parkinson’s disease has Michael J. Fox, ALS (Lou Gehrig’s disease) has the ice bucket challenge, and Muscular Dystrophy had Jerry Lewis and a national telethon. There are commercials spreading the word about Alzheimer’s disease, and erectile dysfunction. And my favorite of all is when we turn the world pink for breast cancer! While I am very happy these diseases have a famous face, activity, or color to make people aware, I can’t help but feel anger and despair. Where is MY celebrity, where is MY telethon, why isn’t anyone “Standing Up” for MG, why isn’t the local or national news talking about MY disease! Where is the press when there is an MG Walk? Just once I would love to see something, or someone wearing something Teal for Myasthenia Gravis! Instead of spreading information about ways to look younger, lose weight quicker and have the libido of a rabbit, imagine the information television doctors could share. A monthly segment about a different rare disease would be so educational! Think of the funding and grants that could become available!
During the month of June we bombard social media with pictures, links, and information about Myasthenia Gravis all in the hope that someone somewhere will help us put a face to this disease. For me and many others every day, week, month, and year is about MYASTHNIA GRAVIS AWARENESS…
I am an “Armchair Activist” I blog, tweet, and spread as much information as I can about MY disease…I AM THE FACE OF MYASTHENIA GRAVIS!
If you are interested in learning more visit:
The Myasthenia Gravis Foundation of America
follow #IhaveheardofMG or #stompoutMG
or visit my blog where I share what it’s like to live with Myasthenia Gravis
This post was written by Myasthenia Gravis Health Activist, Rachel. You can connect with her on Twitter.
The below post is from Gastroparesis Health Activist, Melissa’s, blog.
Top 10 Reasons I Know I am in a Hospital and Not a Hotel
Well, I am angry, and when I am angry I should never write. I know this, but I cannot help myself. I just read an article about who best understands patient satisfaction – doctors and nurses or hospital administrators. (My answer is “neither,” but that is a topic for another day.) Anyway, the point of the article was largely lost on me when one nurse commented, “A hospital isn’t a hotel; patients shouldn’t expect to be pampered.” Wow! read more »
This week Health Activist AnneMarie hosted our #hachat. We discussed the importance of awareness campaigns, what makes them successful and what we can do to make them as influential as possible.
This month we’re learning about WEGO Health team member, Laurel!
Explain what you do at WEGO Health!
I am responsible for uncovering opportunities with potential sponsors. I come in early to identify the sponsors needs. I then help design the best program that aligns with those needs and also connects with the strengths and needs of our network.
How have Health Activists affected your outlook on health?
I appreciate my health and my children’s health so much more and feel blessed that we are fortunate enough to be healthy. I was diagnosed with hypertension when I was 21 and I have always been angry about that, but that pales in comparison to what many others are going through with her health. It’s inspirational to see how positive, supportive and open the Health Activists are to their communities.
1. Why did you become a Health Activist? Tell us your Health Activist story!
I began having problems when I was in 5th grade. Having been really into dance and softball, I had to give both up for something less stressful on my joints. From 5th grade until I graduated high school, I always had to be careful in gym class – never running the 1-mile fitness test. It seemed every year I was in physical therapy for some problem and was always rocking the latest knee brace or crutch design. I constantly was labeled the ‘hard’ or ‘interesting’ case and seemed to stump every doctor I visited.
Once I got to college, I thought all my problems were over! I still continued to joke about how the doctors always said I’d probably need a knee replacement by the time I was 30, but I seemed to be doing well. Then, in my late 20’s my immune system came back with a vengeance.
I held an IT consulting job that kept me on my toes 24/7/365. My pain came back in the form of hip pain that traveled down my leg to my knee, then to my ankle and eventually making it unable to straighten or bend my whole left leg. For weeks, I walked all over New York City and traveled through Atlanta’s airport like this. Wincing in pain as I’d hobble to and from my gates. Little did I know that my whole life was about to COMPLETEY change.
June 13, 2012 went in for what I thought would be a simple surgery (which was my 4th knee surgery) and have yet to return. That simple surgery turned into another surgery 2 months later (5th surgery), hospital visits, endless testing and 6 months of bed rest. It forced me to go out on disability – first short term, which then turned to long term. It changed my day-to-day activities; it really changed my whole sense of normal.
At first, I was not a fan of all the changes. I was bitter, angry, upset, hurt, scared, nervous – if you could feel it, I definitely was experiencing it. Here I was, at 27 years old, out on disability while all my other friends went about living their daily lives. My life was sent to a complete halt, while everyone else’s continued to move onwards. Relationships fell apart, my mindset fell apart – it was extremely difficult.
It wasn’t until a family trip to Florida when I had a big ‘aha’ moment. I was always into singing and while in Florida I auditioned for the American Idol Experience. After spending the previous 6 months pretty much on bed rest, I was cast in a show and sang for hundreds of people. I won the afternoon show and advanced to the finale show of the day.
As I stood up on that stage, I began to tear up.
Just because I had a new ‘normal’ didn’t mean it had to be a BAD normal. It was just different – I had to get used to it being different.
Just because I couldn’t do everything I wanted to do, didn’t mean I couldn’t still do some of the things I enjoyed. Activities can be modified!
Just because my life had completely flipped upside down, didn’t mean there wasn’t a silver lining in it.
Today, I’m still on disability, but I’m working towards getting back to work full-time. Not back to IT consulting, but to a completely new field of work that my disability has brought to me. I’ve realized that I’ve been given the path I’m on for a reason and that reason is to help others who are on similar paths. I’ve become a certified holistic health coach, I’m working towards becoming a certified yoga instructor and even looking at furthering my medical knowledge through possibly obtaining a masters or functional medicine certification.
Sure, autoimmunity has taken away a lot of things in my life, but autoimmunity has also given me so many blessings in my life. I’m so passionate about living a happy, positive, fulfilling life and I love to help other chronically fabulous patients see that as well.
2. What are your goals for Health Activism in 2015?
My biggest goal in 2015 is to a start group coaching program that will also have a ‘support’ group component to it. I think one of the best things that we can do as chronically fabulous patients is to seek the support of others going through similar situations. I really feel like group coaching is my calling and now, more than ever, I feel like I need to start implementing it. My vision is to help patients go through making dietary and lifestyle changes, in a group setting, to help manage their symptoms. I’ve started working with a local institute to create this program in Pittsburgh, but my next focus is to create a virtual program so that all my spoonie friends all over the world can attend it too!
My second big goal is to buckle down and really concentrate on my book. I’ve been floating around about 7 or 8 different book ideas, but I really need to stop, concentrate and just do it! I have some really amazing ideas to create very needed patient resources and I feel like 2015 is the year to start making that happen!
3. What awareness event or effort are you most excited about in your condition?
I’m extremely excited about all the work and events The National Psoriasis Foundation are doing. They’re SO patient focused and really are an amazing foundation for those of us out there living with psoriatic arthritis and psoriasis! The research their supporting is really going to make an impact – in EVERY patient. Why? Because psoriasis is one of the easier autoimmune diseases to studying since it occurs at the skin level. I truly believe the research that is being done is going to change the landscape of autoimmunity forever!
4. If you could tell others a few things about your condition and your community, what would you want them to know?
Never, ever, ever, ever give up! We all have bad days – even perfectly healthy individuals! No one is ever “worse off’ than someone else. I truly believe that the obstacles we face in life are meant to teach us important lessons. Try to look for the lessons in your journey. And remember, it is a journey! There will be ups and there will be downs. But it’s YOUR journey, so make it the best you can. You are so strong, so powerful, so amazing. Never doubt that. And the times that you do start to doubt that, turn to the ridiculously, supportive and caring chronic illness community online. I never used twitter before I got into health activism and it truly is one of the greatest tools we can have in our tool box as chronically fabulous patients.
5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?
CONGRATULATIONS FOR BEING AMAZING! We need to make sure that every patient out there realizes they need to be a health activist for their own health. With our current healthcare landscape, it’s so easy to get lost in the many levels. When we arm ourselves with the best knowledge and support that we can, we’re increasing our chances of healing by 1000000%. (It’s science – and also a statistic I totally just made up.) But honestly, science does show that when we have a positive outlook or we truly believe something will work, it’s more likely to work! Healing is an all encompassing event. We need to be committed mind, body and spirit to true healing. By using all the resources we have at our fingertips we can not only heal ourselves, but learn to live our best possible lives. Explore and experiment! Try making dietary and lifestyle changes, try medications, talk with multiple doctors – don’t be limited by what “one doctor tells you” or what “society thinks you should be”. I actually believe that we’re lucky because we have the opportunity to stop, take a look at everything and truly be grateful for what we CAN do. Don’t be limited by what you CAN’T do! And at the end of the day, be grateful. Be grateful for your journey, be grateful for your support system and be grateful for your life!
Julie Cerrone is an American Association of Drugless Practitioners Certified Holistic Health Coach, ePatient Advocate, doTerra Wellness Advocate, speaker and spoonie blogger thriving with psoriatic arthritis, avascular necrosis of the femur, complex regional pain syndrome and has battled melanoma, depression and anxiety. Using her personal mantra ‘it’s just a bad day, not a bad life’, she started itsjustabadday.com, which was named one of the top 5 psoriatic arthritis blogs by EverydayHealth.com. Staying busy is a way of life for Julie. Some of her accomplishments and activities include: 2014 Stanford Medicine X ePatient Scholar, current mentor for the National Psoriasis and Psoriatic Arthritis Foundation, current member of the Advocacy and Mission Committee for Arthritis Foundation, active participant in WEGO Health projects and was named Best In Show: Twitter in the 2015 Health Activist Awards, passionate member of the IRT Digital Activist Team, current coach of nutrition and wellness classes at the Avani Institute in McMurray, PA and excited member of the Intake.Me Patient Advisory Board.
This week, we hosted a Twitter chat with AARP and special guest, Amy Goyer, on caregivers and the resources available to them. Were you unable to join the chat? We’ve got you covered! Check out the recap below: