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Month: May 2012

Setting the Record Straight: Lyme Disease

May is Setting the Record Straight month here at WEGO Health and we’re excited to hear from YOU about the myths & misconceptions that irk you most.  We recently reached out to some Health Activists who participate in the Lyme Disease community and asked them to share their top myths & misconceptions about Lyme Disease.

 

Here’s what we heard from Kenneth Mercure (@thelymelife and http://facebook.com/lymefighter24) and his community – with additional commentary from Lyme Disease Health Activists Jennifer (from http://jmgarnet76.blogspot.com) and Jenny (from http://mylymechronicle.wordpress.com and @artthentic):

 

Top 4 Myths and Misconceptions About Lyme Disease:

 

1) Lyme Disease is Difficult to Get and Easy to Treat


There is nothing difficult to catch about this disease. Anyone living in heavily populated tick country (northeast and upper Midwest) or anyone with a love for outdoors knows how easy it is to pick up ticks during this season. When treated early further complications of the disease can be avoided. However, once it has been allowed to proliferate through the body it can take months or even years to recover. Treatment can also be very expensive, so getting better often relies on what a patient is able to afford. Costs can range from a few hundred dollars to tens of thousands of dollars a month and are not always covered by insurance. Coverage is often denied by insurance companies, citing the guidelines for the diagnosis and treatment of Lyme written by the Infectious Diseases Society of America (IDSA) as proof that long-term treatment is unnecessary and/or experimental.  In addition, the combination of medications needed to combat Lyme Disease and prevent it from morphing into a cyst form is more intricate than the standard treatment.

 

2) A tick must be attached for a certain period of time for disease transmission to occur


This is a hotly debated issue as some experts say it needs to be at least 24 hours or more and others say there is no set time. Couple this with the fact that many individuals either don’t remember how long the tick was on them or simply never saw one at all and it only further makes figuring out how long a tick has to have blood to blood contact before transmitting disease that much more difficult. One fact that is known for sure is that the longer a tick is on you the higher your risk for infection becomes.

 

3) Everyone with Lyme gets a Bulls-Eye Rash


Often thought of as the most definitive early symptom of Lyme Disease, the Bull’s-Eye rash is not as common as people think it is. Experts suggest that the rash is seen in as little as 30% of cases, with rashes also going unnoticed due to body hair and unusual placement on the body.  The deer ticks most commonly known for transmitting the disease are often the size of a pin head! Impossible to find these in your hair (or many places) unless they are already engorged with your blood and actively transmitting infection.

 

4) Lyme Disease is Rare


The Centers for Disease Control and Prevention (CDC) reports around 28,000 new cases annually, but admit that the actual number is likely ten times that, totaling 300,000+ new infections per year. That would mean that since the year 2000 there have been 3,600,000 new infections. The numbers say it all- Lyme Disease is not rare!

 

 

Want to see all 14 of the myths and misconceptions we heard from Lyme Disease Health Activisits?  Check out our Facebook Note and be sure to Like our page at www.facebook.com/wegohealth.

 

 

 

#HAchat Recap: Finding Identity in Diagnosis

When you’re getting to know someone for the first time, there are certain things about yourself that you want them to know. You may not even realize that you’re doing it, but there are certain key pieces of information that whether consciously or subconsciously, you need them to know. Maybe it’s your profession, or where you’re from, or the names of your children. Maybe it’s that you’re a dancer or a world traveler.  No matter what these things are, they are things that if someone didn’t know about you, they wouldn’t fully understand what makes you, you. They’re the essence of who you are.  There are things that you do, that you believe, that you embody, that make you who you are.  So, what happens when you’re sick? When your diagnosis becomes a very integral part of your reality? When you can no longer do all of the things that made you who you are?  Does your identity change? Do you feel differently about yourself? Do others see you differently?  Your condition may not be something you’d tell someone about at a party, but it’s still a part of who you are, and only you can decide how it will or will not define you.  In this week’s Health Activist Chat, we discussed the crossover between identity and diagnosis.

 

The Positive Power of Diagnosis

For some, diagnosis can lead to very positive changes in sense of self and identity. For those that have been searching for a diagnosis, for a name to call what they feel and for a justification for their symptoms, a diagnosis can be liberating.  Finally – friends, family and doctors will see that you’re not making it up, that there is a name for what your body is doing and there is something that you can do about it.

serenebutterfly Before the diagnosis I thought myself as being weird or weak, after I realise it’s because I have a neurological condition #hachat

CIRants Getting a diagnosis was a relief – I had a course of action after 11 years of not knowing what was wrong. #HAchat

TomKindlon: Before the diagnosis I was full of doubts about myself: wondering was I doing something wrong in my lifestyle.#HAchat

MakeThisLookAwe I’m 2 completely different people before/after my condition. I can’t be her anymore. Her activities hurt. She is not me. #HAchat

marandacarvell @wegohealth it’s been good for my emotional health in many ways. i know i have A, B, C and not just tired/crazy/whatever #hachat

serenebutterfly I found my diagnosis bittersweet – upset as there’s nothing they can do to fix me but relieved that there was a name to it #hachat

TiffanyAndLupus Post-diagnosis me now feels very empowered by my life choices after diagnosis. By owning & admitting it I feel much happier. #HaChat

 

Diagnosis gives you the power to spring into action.  It means that there is something that you can start doing to hopefully make yourself feel better. KatharineS84 : Having an answer to why I was sick all the time was a relief. Initially I felt more in control. #HAchat There are new doctors to see, new treatments to try, new research you can do. Where you might have felt lost, you now have some direction. No matter what the outcome, you can at least start to make some changes to your life.

CIRants Diagnosis sets expectations – higher or lower, they are what they are, and it provides a chance to accept them. #HAchat .

marandacarvell it’s a lot easier to have a plan of action, even if i don’t always love the plan 😉 #hachat

 

Self-Image and Perceived Identity

KatharineS84: Having a diagnosis has pros & cons. It gives you some power, some options, but it also opens up other scary doors. #HAchat

Diagnosis can also lead to a serious identity crisis. Your diagnosis will likely mean a monumental shift in lifestyle, in everything from your job to the medications you take, the way you spend your free time, your exercise habits, the way you have fun, your relationships with friends and family and your potential for relationships in the future.  These are scary things to face, which is why depression is such a common comorbidity across conditions.   @TiffanyAndLupus: For many, illness is destroyer of all they loved. For some denial is better than accepting reality #HaChat.   You may have to give up some activities that you loved, or friendships that you can no longer maintain.  You may have to give up some things which your identity and your happiness previously depended on.

This sense of loss can be exacerbated by the way that others see you and your new diagnosis (or lack thereof). It is for this reason that many choose not to disclose their condition in the work place, or that you may have stopped discussing your journey to diagnosis.  You don’t want people to see you as “sick,” as a faker, or as an exaggerator.  There’s more to you than your symptoms or your diagnosis, and if people find out they might make assumptions about you based on what little they know about your condition. They may blame you for your illness, saying that you deserve what you got based on assumptions on your behavior.

Dyverse_Steele sometimes the stigma of disease can even affect your own thinking maybe it is in my head a little bit #hachat

KatharineS84: I struggled w/ppl finding out I had CF before they got to know ME. Didn’t want them to only see me as “sick.”#HAchat

 

What’s your label?

PurdueMocha: My friends see me as a “dia-bad-ass” #HAchat

In your journey to redefine yourself, you’ll need a new label. It doesn’t have to be something that you tell everyone, shout from the rooftops or tattoo on your body (though we have seen some pretty awesome spoonie tattoos), you have to pick a title or a label that works for you.  The decision is yours and yours alone.  julianna12369 We choose the label we want to carry, we walk the life we want to walk. Our limits are our own. We make our rules. #HAchat

TiffanyAndLupus : In the lupus community, I like to think of us as “Lupus Warriors”, we often call each other “lupies”. 🙂#HaChat -3:24 PM May 29th, 2012

KatharineS84 : We refer to each other and cysters (females) and fibros (males). It does make it feel like more of a “club” than an illness. #HAchat

julianna12369 It’s an umbrella of all chronic illness. You got it, it’s chronic? Then it’s awesome to us! #chronicallyawesome

What’s the benefit of picking one of these nicknames/titles/labels to accompany your new sense of self? It comes with a whole community of support.  It connects you to others living with your condition, but it also gives you a way to connect with others across conditions.  marandacarvell terms like #spoonie help ppl connect and create an instant community of ppl who ‘get’ you

MakeThisLookAwe For all invisible diseases, pre- and post-diagnosis, But You Don’t Look Sick’s #spoonie!!! #bydls #HAchat-3:25 PM May 29th, 2012

marandacarvell love @whatthejules #chronicallyawesome hashtag for uniting others who lift me up, don’t bring me down, yet still get me #hachat

MakeThisLookAwe My disease is rare (less than 400 cases), so I call us #medicalunicorns #HAchat

 

Taking Control

You may not have control over your diagnosis or your condition, but you do have control over how you handle it.  Sometimes things happen for a reason, but sometimes things just happen.  Without rhyme or reason, this is the hand you’ve been dealt. Now it’s time to learn how to play it.

mandylipka: Take it one day at a time. Your dx doesn’t define you, you define your dx. And as always, be your own advocate!#HAchat

TomKindlon: (Tips for “new” patients) “Things work out best for those who make the best out of how things work out”#HAchat

MakeThisLookAwe Sometimes, things won’t work out for the best. But we can #MakeThisLookAwesome, even if it is only to defy slowly dying! #HAchat

TiffanyAndLupus: Just because we have to adjust our lifestyles post-diagnosis does not mean we can’t still enjoy it. Find your NEW happy! #HaChat

 

How do members of your community identify themselves? Do you have a nickname for members of your community or your condition? If so, we’d love to hear it! Email us at community@wegohealth.com or interact with us on Facebook or Twitter.  And as always be sure to join us next week for a special #HAChat to kickoff June’s Health Technology Month!


 

What Depression Health Activists Want You To Know

In honor of National Mental Health Awareness Month, WEGO Health conducted a Health Activist Roundtable with several members of the online Depression community – Tiffany, Corey, Dani, Will, and Patrick.  They shared some very honest and important feedback based on their experiences within the community and we wanted to make sure you had a chance to hear from them as well:

 

“These kids yearn to talk to someone about “ suicidiation” and self-injury and not be ostracized for it.  It’s the “S” word. I think it’s healthy to talk about it if it’s a part of your life because the more you get it out the more you’ll start to heal.” –Tiffany


“I do most of my work on YouTube, video blogging. It’s a close knit community of younger people who feel more comfortable opening up.   I wish there was a way for it to not be so public because it does help to keep things face to face, and there have been times where I’ve wanted to take all of my videos down because I’ve felt vulnerable.  I’m now at the point where I would never consider doing that but for others who are just starting then it can be hard as you get some negative feedback.” –Dani


“What we need is a hotline to direct them to those [mental health] centers.  There is no intermediary step for people to get services without going into crisis. The way the system is set up is very frustrating and it doesn’t provide quality care.” –Patrick


“The medications for depression are more controversial and less documented than in other areas. The modalities that are used, some of which are well documented and some of which aren’t.  Treatment options are very confusing because people don’t really know what to believe or who to trust. Opinions are polarized in terms of use of medication.  Mental health is unique in terms of how controversial and confused the scene is.”  –Will


“People would be surprised to know that we can still be creative. Sometimes I write about people that are famous that struggled with depression. You can be a success. You can have depression and borderline personality disorder and all sorts of mental illnesses and still have a successful life.” –Corey


“We’re not always on the edge of being locked up. We express extreme emotional states that might not be positive but that doesn’t mean that we can’t get better. We’re not being manipulative or avoiding treatment or health.” –Tiffany


“Though readership is fairly robust, participation is low. I blog under my real name and I don’t hide much. This is the only way we will move past the point where people feel so ashamed.  The only way we will do this is by modeling the behavior, by having more people that present themselves as having mental illness or condition and having a full and productive life. It’s a hard way to go but it’ll have a bigger impact.” –Will


Be sure to follow these awesome Health Activists:

Will

www.willspirit.com and @willspiritM

Patrick

http://www.shareyourblues.com and @ShareYourBlues

Dani

http://youtube.com/uer/thedanizblog and @thedanizblog

Tiffany

https://www.facebook.com/pages/Borderline-Personality-Disorder-Coping-Awareness/381410498561987 and @RiotGrrrlJax

Corey

http://hopeisreal.blogspot.com and @hopepersists

 

Want to participate in an upcoming Health Activist Roundtable?  Sign up here: Health Activist Roundtable

 

 

 

Celiac Disease – A Health Activist Perspective

In honor of Celiac Disease Awareness Month, WEGO Health recently got in touch with Celiac Disease and Diabetes Health Activist Bridget who blogs over at Bridget Writes.  As someone who focuses on both diabetes and gluten-free, Bridget had some great things to share with us about Celiac Disease.

 

What do you wish other Health Activists (those not familiar with Celiac Disease) knew about you, your community, or living with celiac?

It’s a difficult process learning how to go gluten-free in the beginning, but it doesn’t mean we can’t eat anything. We have to follow a gluten-free/ lactose-free diet at my home due to celiac disease and lactose intolerance, so it was a bit of a change in cooking and lifestyle in the beginning but it’s gotten easier over time. Just because they hear gluten-free doesn’t mean we’re eating foods that aren’t yummy and delicious. There are many meals that are gluten-free that are quite tasty.


What do you wish healthcare companies (insurance companies, pharmaceutical companies, etc.) knew about you, your community, or living with celiac?

I wish there was more recognition by healthcare companies, and even doctors in general. It took a fight and battle just to get tested and finally get the diagnosis. There should be more patient listening and recognition overall.

 

What myth or misconception about celiac disease would you most like to set straight?


That celiac disease means you are frail or fragile. You are a normal healthy person that just happens to live with a chronic illness. The diagnosis of celiac disease forces you to live a more healthy lifestyle overall. You can do everything you did previous to diagnosis; you just have to watch the way you eat now.

 

Thanks to Bridget and all of our other Celiac Disease Health Activists for sharing their thoughts and experiences and helping us celebrate Celiac Disease Awareness Month!

 

 

Today's #HAchat – Identity in Diagnosis?

Image credit: inkytwist on Flickr

To wrap-up our month of identifying, confronting, and correcting myths – today’s chat will center around the idea of identity. Last week we got literal: sharing myths and truths about ourselves as patients, e-patients, and Health Activists. Let’s continue with that idea – but get a bit more philosophical.

 

Who are you? What comprises you as a person? As a patient? As a leader?

 

Join us at 3pm ET to discuss the following:

– How do people’s health condition(s) play into how they see themselves?

– What’s the difference between how you see yourself pre-diagnosis and post-diagnosis?

– Does a title (definitive diagnosis) make a difference? How?

– How does a diagnosis play into how others see you?

– What tips do you have for someone who is coming to terms with themselves as a patient?

– Is there such a thing as “finding yourself”? If yes – what does it mean? If no – why not?

– How can we work together to make newly diagnosed patients feel comfortable no matter who they are?

 

We’ll be tweeting over in our Tweetchat Room: http://tweetchat.com/room/HAchat#

 

 

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