The odds are heavily stacked against us, but we can defy some of those odds! While we can't control everything going on with our bodies, we can learn to control that which is still within our control in order to change where we're at! We cannot leave it all to our doctors, far too many of them don’t understand what we’re facing anyway (they think it’s all psychosomatic).

Most of us have spent years (or decades) complaining about symptoms only to have it fall on deaf ears by those we love and trust. Overtime, that can wear out even the strongest and most confident amongst us. We tend to stop believing what we feel to be real, and it ultimately changes the way we see ourselves and our attitude towards everything pertaining to us. We need to turn our perspectives, so that we see ourselves as worthy and capable of more.

We don’t have to ignore our reality or turn a blind eye to the negative aspects of our conditions to have a positive and healthy perspective. We can choose to frame things in a positive light.

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Elyse S.
Tired of your doctors telling you, “If you just exercised, you’d feel better!”?

Well, they may not be all wrong. Just hear me out! The truth is we all just want to feel better and fight to get as much of our lives back as we can. That is never going to be as easy for us as it would be for someone who doesn’t have all of the challenges that we deal with.

Not only is moving necessary for our circulatory systems, and better blood flow means less inflammation, but as Elle Woods says, “Exercise creates endorphins. Endorphins make people happy.” It’s actually true. And whether you’re chronically ill or just sedentary, a slight boost in happiness can change your entire outlook on life. O, so I am also not saying go out and pick up CrossFit. Or marathon running. We all know our bodies most likely cannot tolerate that. So how do you exercise safely, while still providing yourself the benefits of movement? Each one of us are different, but my goal is to give you the framework of how to start moving in some way, and then you build on that foundation.

Start small. I want you to remember that for the rest of your life – especially when you are faced with something difficult or are challenging yourself to start moving. Write down a goal (i.e., walk to the kitchen and back, or walk to _____ and back) and put it somewhere that you will see it. Once a day, accomplish that task.

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We are organizing online support groups to help patients take control of what is within our control in regard to:
• Eating wiser to help control pain & symptoms
• Moving wiser to help control pain & symptoms
• Reducing stress to help control pain & symptoms


Most of our members use mobile devices and therefore are more accustomed to using apps (as opposed to websites), so we are working on rolling out an app for the site to make it easier for everyone to get the help they need! These apps will be available for both Apple and Android.

We have resumed our online support group meetings. We are now meeting on the 2nd and 4th Tuesday evening of each month.
[Times and reminders.]
Many of the Chiari/Comorbid non-profits bring in close to a million dollars a year in donations. During the early years, my husband and I paid for everything. We’ve done a lot with a little, but our expenses have grown beyond that now (with new things like the social media platform and app). We currently have a handful of people who donate every month through PayPal, but if we’re going to grow this and keep things free for those that need it, we are going to need help.

[For more information on how you can help support us!]