Introducing CVS Speaks!

17087_1549547228652902_9015094391840133499_n

Introducing CVS Speaks! A social media outreach organization dedicated to connecting CVS sufferers and their families with online support groups and media resources. It is a volunteer organization seeking to raise awareness of Cyclic Vomiting Syndrome, and to help all people of CVS to find the support group that fits their needs. CVS Speaks also assists and supports the Admins of a variety of groups to help maintain the highest quality groups of Facebook.

The CVS Speaks – Think Tank is a sub-group of CVS Speaks where many minds can come together to brainstorm ways to raise awareness of this condition, and discover tangible ways to campaign, educate, and raise awareness within the medical community and the general population. Please join today and post your ideas here!

We all need support, and these groups are a great way to meet others with CVS, ask questions, and share ideas. I encourage you to click the links below to visit and join the Facebook support groups today!

The following groups on Facebook currently make up the collective network called CVS Speaks:

Email CVS Speaks at: cvs.speaks@gmail.com

10653329_1550682468539378_8337450479549474135_n

My Pretty Binder for My Ugly Disorder

Written on 5/6/14

I am in the process of making a “CVS Binder” (a two inch 3 ring binder) that will basically go everywhere I go and that I will give to ER staff and doctors who don’t know me.

I’ve included the following “sections” separated by tab pages:

An “intro” section at the front where I typed a brief statement (“Hello. My name is Angie and I have CVS”) telling who I am and what I have going on with me. I mentioned that I might not be able to communicate but that all the information they need is in my binder that I brought for them. This section also has the “What is CVS?” document from the CVSA homepage, and some other 1 page documents describing CVS in general and briefly.

A “current medications” section where I list in detail meds, dosages, frequency, and time of day taken. i list current meds regularly taken, as well as meds that I only occasionally take including over-the-counter supplements and vitamins.

A “medical history” section where I chronologically list every doctor appointment and lab results associated with it. Also any diagnosis complete with the diagnosis code is highlighted throughout. I used different colors for different docs. I used green to indicate episodes, and I even used orange to document events like vacations that happened around episode time that show a strong correlation to positive excitement. Also my periods are documented and they also show a very strong correlation to episodes.

(It has been super helpful going back through all my old medical history documents and piecing it all together chronologically. It turns out that the two times in my life when I had episodes every 1-2 months was when I was using the Nuva Ring! Now I’m CONVINCED that my hormones are one of the biggest players in this game my body is playing.)

A “tests” section where I have copies of all the important tests they have done to me over the years to rule out everything else and diagnose me with CVS. Including MRI results and blood work.

An “episode diary” section where I have copies of all my entries for each episode and list detailed info about the actual individual episode I was experiencing at that moment.

An “Empiric Guidelines” section where I have many copies of it to give to anyone I think will read it.

A “CVSA” section where I have Code V articles, a list of the CVSA medical advisors and their contact information. And any other general CVSA stuff I want to throw in.

And a “research articles” section where I have all the lists of the research articles as well as a few of the more important articles printed out to keep there for doctors to reference.

My goal is to have 3 separate identical binders in the end. One for each vehicle so I’ll always have one with me. I’ll take one when I travel and on vacation. I travel alone for work a lot, and other people have no idea about my disorder, so this could help if I were in a situation where other people had to care for me that aren’t used to doing so. This binder will introduce anyone to CVS, and give them the ability to look back into my medical past in as much detail as they want without having to go find or wait on records.

I have this little dream that I could have to go to the hospital alone, and I hand them the binder at the ER, and they read it, and I don’t have to speak a word because they understand what to do, and then they do it! Ha! Well, wouldn’t it be nice if it were to work that way, but I doubt it will. I’ll still dream it though [smile]