CVS Community Cares

CVSA is changing the backgrounds on our social pages, to the image above, to remind people to take time to care. Having CVS puts patients, families, and caregivers in the unique situation of knowing more about isolation than others that are “sheltering-in-place” right now. Together we can be the example and support that can help others understand more about isolation and the emotional turmoil that accompanies it.

We have the opportunity and the voice. Sharing our stories and experiences creates a sense of belonging as well as helping us and others overcome the fear of the unknown that this pandemic is creating. Let people know that you care about them, especially the vulnerable and the high-risk; let them know you want to help flatten the curve. Share ways that you get through isolation and being socially distant from others. Many CVS sufferers and caregivers are not new to social distancing, as we all experience it when plans must be canceled due to an episode or when we have to avoid people that are ill. Let’s support each other and others during this challenging time.
Let’s show that the CVS Community Cares.
CVS patients are not considered high-risk, under the current guidelines for COVID-19. Read about this information in a n important update on COVID-19 that was previously sent via email here .

Those affected by CVS are not immune compromised unless they have other underlying conditions that fall into the high-risk areas. Those CVS patients that are triggered by illness and infection need to be extremely careful in avoiding COVID-19. The guidelines set by the CDC suggest trying to avoid contact, shelter-in-place, wash hands and surfaces.

CVS patients should try to limit stress and anxiety, and attempt to avoid going to the emergency room, unless absolutely necessary.
 
It’s important to practice self-care to support emotional and mental health during stressful times.
 
Here are some suggestions:
 
Find ways to manage your stress during this situation. One way to do that is to practice meditation and deep breathing, utilizing apps like  Calm   and  Headspace . Practice guided breathing which can promote a feeling of calm by utilizing wearable devices such as a Fitbit or an Apple Watch.
 
Are you feeling anxious or overwhelmed? While practicing social distancing you may want to c onsider virtual counseling by utilizing apps like  Better Help ,  Regain Counseling ,   or  Talk Space . These apps may have fees associated with the virtual visits.

Are you missing your friends and family? Host a virtual call where you can not only talk but you can also see each other. Some apps to consider are  Zoom ,  Skype ,  Facetime on Apple, or Google Duo on Android.
 
Schedule regular breaks from the news and social media. Take the time to take a walk, listen to music, read a book, do something you enjoy or even consider starting a new hobby.
 
Follow guidelines suggested by trustworthy sources, such as  World Health Organization   and  Centers for Disease Control and Prevention .

Thank You for celebrating
CVS International Awareness Day with us
 Thank you for the many efforts made to bring attention to CVS. 
To see the various ways that awareness was raised click here .
Did you see this announcement on March 5th?
Takeda Pharmaceuticals, Medicine X and Cyclic Vomiting Syndrome Association partnered together to support the CVS community and develop a story about CVS. CVS Xplained was developed to show what patients with CVS experience. To view the story please click here .
  Do you wish you knew more about the Conference speakers? 
Over the next few months we will be highlighting all our speakers. 
  For more information on all the speakers see our next printed newsletter. 
The printed newsletter is a member only benefit!
Click here to join.
Dr. Sally Tarbell is a Professor of Psychiatry and Behavioral Sciences at the Northwestern Feinberg School of Medicine, where she works within the Division of Gastroenterology at Ann & Robert H. Lurie Children’s Hospital. She has been a member of the CVSA medical advisory committee for 16 Years. She has been actively engaged in treating CVS patients and in conducting research to understand the factors that contribute to illness onset and health related quality of life. She has a particular interest in the relationship between anxiety symptoms and CVS, to develop treatments to manage anxiety to potentially reduce the frequency of episodes and to assist with coping with the symptoms of CVS.

When Dr. Tarbell was asked, what do you see as the biggest advancement in the treatment of CVS thus far? She responded; "The Pediatric and Adult treatment guidelines have been instrumental in increasing recognition and treatment for CVS. Involving researchers who study nausea has opened doors to collaborations to better understand the mechanisms underlying nausea which is needed to better treat this distressing symptom that is part of the CVS episode."
Ms. Bielinski, L.Ac works at Milwaukee Community Acupuncture in Milwaukee's Bay View neighborhood. She is currently serving as the Vice President of the Wisconsin Society of Acupuncturists and is committed to the proliferation and education of acupuncture. Megan first experienced the benefits of acupuncture as a patient. After experiencing severe migraines for years and being unsatisfied with the relief provided by traditional western medicine, Megan found that her condition improved dramatically with acupuncture. Not long after Megan learned that Chinese Medicine could help control her migraines, she began pursuing her master’s degree in Traditional Oriental Medicine at Pacific College of Oriental Medicine in Chicago.

When Megan was asked, How can acupuncture specifically help with CVS or migraine patients? She responded "Acupuncture excels at increasing the circulation in the body (for migraine sufferers, specifically the head) and helps to reduce inflammation. Many studies prove the efficacy and safety of acupuncture to treat migraines, over time reducing the frequency and severity of attacks and helps patients to recover from the 'hangover' of migraines quicker. "
Join Blynda, along with other CVS Sufferers and Caregivers on Monday, April 13th, for the monthly support call.
Thank you to all that set up fundraisers on Facebook with Facebook Donations!

Please note that due to Facebook's algorithms and privacy restrictions, CVSA is unable to determine the dates that fundraisers take place.
 
If your CVSA fundraiser raised more than $200 please send a screenshot to the CVSA office to receive your complimentary 1 year membership, please email  cvsa@cvsaonline.org .