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CraftyCat32

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Reply with quote  #1 

Hello everyone!

I'm new here... just dipping my tow in really. Ive been having fits of vomiting since I was 17 I'm almost 30 now. I also have fibromyalgia, Im a type 1 diabetic, and have IBS. I havent been able to work in about 5 years and my social circle has become increasingly small. I like to cook and bake, I also love crafting, video games, and computers.

So I am here looking for some people to maybe connect with. CVS is very isolating and it stinks.

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wynnak

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Reply with quote  #2 
I agree with you. So isolating when it feels like no one understands.

Great that you are reaching out here. Great place to connect even if it takes a day or so.

I like to do all kinds of things.. poking and baking among them. I don’t have time for a lot of crafting anymore.. but I do do a lot of DIY stuff, so crafting on another level.😁


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Blynda
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CraftyCat32

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Reply with quote  #3 

I think most people think that I am exaggerating when I try to talk to them about it. I very much wish I had a few more people in my life that understand how this impacts my life... it has been a roller coaster.

I'm really hopeful that this is where I'll be able to meet some people who get it πŸ˜‰ I have grown to be an exceedingly patient person through everything.... I definitely don't mind waiting a few days for replies.


DIY definitely still counts as being crafty lol. I've been sick almost every day for over a month now, and have unfortunately fallen behind in my crafts. When I had to quit working I needed more things than just netflix to fill my time so I started to sew. I love to make blankets even though they take me a long time to finish. But I think a nice blanket is akin to an old friend <3 

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ginny

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Reply with quote  #4 

I think the CVSA Facebook group is more active with chatting.  

When my daughter had CVS she was younger so my ideas are limited to the kid age group.  I love to read and I think I could read forever.  

 


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ginny CVSA Moderator
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CraftyCat32

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Reply with quote  #5 
Facebook would probably be a good idea. I've never been huge on social media and sometimes forget about it lol
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ginny

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Reply with quote  #6 

There are some off-shoots (not CVSA sanctioned) Facebook Groups.  If you just google CVSA Facebook you can locate the official group.  And I think the whirly blue CVSA symbol is on the page as well.

I think CVSA also runs a Facebook page for college age and young adults.

The other groups on Facebook for CVS patients are probably fine, just remember the information might not be as up to date or accurate on CVSA policy or official treatments.  Be careful of non CVSA fundraisers being sometimes promoted on other pages-- CVSA is an organization run almost entirely of volunteers and CVSA fundraising for CVSA is extraordinarily important.  CVSA newly published Adult Guidelines is an example of ongoing fundraising results.

MItoAction.Org is another support site with lots of information and interaction between Mito and CVS patients, parents, caregivers.  I used to find support on that site when I had additional questions.




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ginny CVSA Moderator
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wynnak

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Reply with quote  #7 
There is a link to CVSAs Facebook page on the website, as well as twitter and Instagram.

The Facebook page has a spot marked visitors posts, due to the page type that we have through Facebook, it is hard to find.

I like the info here. Lots to read and learn about.

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