This topic contains 24 replies, has 4 voices, and was last updated by  Jen Cueva 3 weeks, 4 days ago.

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  • #21065
     Brittany Foster 
    Keymaster

    I have found that sharing and being honest about my health through my social media has really helped me. Not only does it help by providing support from others that are going through something similar, but it helps to keep my close friends up to date on what may be going on for me. It is hard to update everyone individually so social media, like my Facebook account and my Instagram account, helps to update everyone at once and allows others to reach out to me individually.

    I have met some of my closest friends online through social media by spreading awareness about my current health status.
    Does social media help connect you? Is it a good outlet to share about your mental and physical health? How much do you share on social media?

  • #21085
     Jen Cueva 
    Participant

    Hi Brittany,
    I do share some on social media. I was bad about this before but I am getting better at sharing more. I think that writing my column and sharing it here has helped me open up more. I also think, that connecting with friends like you and others have been the best part for me using social media.

    • #21092
       Brittany Foster 
      Keymaster

      Jen,
      That’s honestly how I was at first too. It was always hard for me to open up about my health but when I started writing my columns and was getting positive feedback from so many in the chronic illness community (not even just PH related) I realized that these things NEED to be talked about. Sometimes I have to bring up the hard topics because I know I’m not the only one that thinks about them.

      • #21123
         Jen Cueva 
        Participant

        So true, Brittany. And because of your opening-up and sharing, I know that has been a huge help for me to do the same.

        Speaking of social media friends, I forgot to share a story for last weekend. Although I met Colleen (In NF) in a PH chat room a few years after I was diagnosed, we are not just on social media. But. last Friday, after we had not talked on the phone for 4 years probably, she called me. She was not sure that I would answer, but I did and she and I talked for several hours. Hehe- That is the binds that we often build on social media and within forums, etc. These friendships are priceless. I hope to meet her in person next year since she is one of the only first PH friends that I met early in my diagnosis and we have not met. Sadly, so many of our group back that has passed away. We had a great chat and catching up and talking about those who we have lost, too.

  • #21112
     V.R. Peterson 
    Participant

    My only social media is Facebook. I share my son’s journey on two private groups that deal specifically with PH and CTEPH, but not on my main page. That’s because my son isn’t on FB, and he’s a very private person and has asked me to not share (except on those two groups).

    • #21124
       Jen Cueva 
      Participant

      @mamabear007, I can respect his privacy. I m glad that you are in the private groups as I know you sharing his story, well your journey, too, will help others. Thanks for always sharing and offering your Mama Bear perspective. I hope that you are having a good week.

      • #21150
         V.R. Peterson 
        Participant

        Thank you, @jenc. My week is pretty darn good so far. I’ve been knitting zebras for the https://www.facebook.com/ZebrasforKids/ group, and I just started my fifth. Actually, my first one was crocheted, then the gal who runs this found a knit pattern for me, since I prefer knitting. I didn’t count that one in my social media posts since I never post anything personal in that one. The gal who started this charity did it to honor her child that she lost to PH. Gives me a whole ‘nother level of respect for what people go through.

      • #21155
         Jen Cueva 
        Participant

        @mamabear007, I appreciate that you shared that story. That is so heartwarming. I am glad that you can use a hobby and talent to crochet the zebras for kids. I am so not creative, so I admire those of you who are. I am glad that you shared that, that is certainly a way to give back and helps you mentally, too, I am sure.

        Keep up the great job! Hope your week continues to be a good one.

      • #21170
         V.R. Peterson 
        Participant

        Thank you @jenc, @brittany-foster and @colleensteele. I think I get more out out it than the children on the receiving end because of the warm fuzzies I get whenever I see a picture or video of a child holding a zebra I’ve made. Those zebras are definitely a team effort. I don’t know how many are knitting or crocheting them, but I know it’s a lot.

        Brittany, those little red hats sound wonderful. Are the blankets you’re talking about the fleece ones that have two thicknesses, and the two layers are tied along the ends? I’ve always loved those. They’d be perfect for children and adults of all ages.

        Colleen, your son’s bear sounds wonderful. I love that he still takes Curly when he’s admitted.

      • #21178
         Brittany Foster 
        Keymaster

        The red hats are totally adorable! And they are just SO TINY too. They melt me when I see them and see the babies wearing them.

        Yes, those are the blankets that I’m talking about . I’m sure they are pretty easy to make and I know others would really love them! Like I said, it always brightens my day when I’m in the hospital and see the design of my own sheet or blanket from home.

      • #21225
         Jen Cueva 
        Participant

        My Mom has some friends at church who made one of those blankets for me, @mamabear007. They called it a prayer blanket. It is a small fuzzy lap like a blanket. It is two different colors then tied and the edges all around. I heard that those are easy to make. But, unfortunately, I cannot even cut a straight line, LOL

      • #21228
         V.R. Peterson 
        Participant

        @jenc, you can get the kits on Amazon (and probably from fabric stores) where the fabric is already cut, including the fringe strips. My church group made some of them for a charity, but my station was just cutting the fringe. I’m not sure I’d know how to tie them together without reading some sort of instructions. One of these days, I’m going to buy a kit, just so I can say I know how to do it. Then I might make one for each of my grandkids.

      • #21231
         Jen Cueva 
        Participant

        Thanks, @mamabear007, I actually saw the kits at Micheal’s one year. This was when my nieces and nephews were all little. I wanted to try it then, never did and now they are teenagers, LOL

        Making one for each grandkid is a great idea. Plus, you are crafty. I may need to start one for my Grandpup. Hehe

      • #21237
         V.R. Peterson 
        Participant

        @jenc, three of my grandchildren are teenagers. If I decide to make them, they’ll get them whether they’re little, teens or adults when I get around to it. LOL!

      • #21268
         Jen Cueva 
        Participant

        LOL @mamabear007, no worries. I am sure that no matter when you can make and give them to each grandchild, it will be perfect timing.

      • #21162
         Brittany Foster 
        Keymaster

        VR,
        This is so great that you do this ! I’m sure the kids love it so much. I always wanted to have a talent like this. My friend’s mom always knits hats to bring to the NICU during heart month in February. They are little red hats for the babies born in February to spread awareness about congenital heart defects. They should do that everywhere! I know that something made from the heart would really help a child so much. I know it would even help me! I would love to do something like that for adults and make those blankets that you pretty much tie the ends together. I forget the exact kind, but I would love doing that for adults AND children to help make their rooms a little more fancy when they are there. Everyone could use a pop of color in their room. When I bring my own sheets and blanket from home it always brings me so much more comfort.

      • #21163
         Colleen Steele 
        Keymaster

        @mamabear007 those knitted zebra’s are adorable! I absolutely love that you do this!

        When my son was 6 years old we were trying to figure out what was causing his declining health. His first test was a reflux test (the real icky kind) and he was scared. They had a bin of stuffed animals that he could choose from and he picked a white bear. He named him curly but 14 year later he looks more like a dingy Flat Stanley. He still takes him for hospital admissions because why stop a 14 year tradition? Nurses often comment that his stuffed animal looks like it’s been through a lot with him – that’s because it has!

        You never know…a few of these xebra’s that you are knitting might become super important to some child and 14 years later, they might still be holding onto it!

  • #21117
     Colleen Steele 
    Keymaster

    I am on Facebook and have used it to spread PH awareness since my son was diagnosed. It’s a great way to share my son’s Caringbridge and my PH News columns too. I’ve belonged to a FB group for families of children with PH since it formed. We were a small group and now it’s over 1,000 members.

    I do have accounts with some other forms of social media but I’m not consistent with using it. If I’m honest, I mostly don’t use the other’s because I really don’t know how to. LOL.

    • #21125
       Jen Cueva 
      Participant

      I can certainly understand, Colleen. I was only familiar with FB until Kevin asked me about doing the Instagram thing. I was like, well I do not have an IG and not familiar with it. But, I started my account and learning as I go. LOL

      I know several others who share their journey on CaringBridge.

      Was that a Halloween party you were at over the weekend? I love the pics. You should share yours here in the Halloween post.

      • #21164
         Colleen Steele 
        Keymaster

        Hi Jen, yes, I was at a Halloween Bunco party that my friend throws every year. It’s actually the mom of my son’s best friend, Keenan, who I wrote about in one of my columns. I so look forward to this every year. I’ll dress up again on Halloween and sit on my porch to give out candy. Halloween really brings out my inner child!

      • #21224
         Jen Cueva 
        Participant

        I love that Colleen. I am happy that you can wear your costume more than once. It is great that you are close friends with Cullen”s best friend’s parents.

        I enjoyed the pics. I am just hoping NOT to eat all of the Halloween candy I have before the kids come. HeHe

    • #21131
       Brittany Foster 
      Keymaster

      Colleen,
      I think that Facebook really is good for a lot of things like this, especially finding that community of people who can relate to what you are going through. I swear, some of the best friends that I have I have met through social media connections. Many of those friends I have also met in person which is great! One of my best friends I never actually “hung out” with in person but we talk almost every day. It’s so funny how friendships can form. I always think about what my mom did before the social media age? How did she get support from other moms? She never even met another “heart mom” when I was growing up, aside from doctor visits and talking there.

      • #21165
         Colleen Steele 
        Keymaster

        Same here Brittany, some of my best friends I met through a PH Facebook page. Sadly, as Jen mentioned, so many of the children whose parents I became close to, have passed away. I’m still very close to those moms and they continue to follow Cullen’s story. I don’t know what I would have done without those friendships! Two of the girls were treated at the same hospital as my son and they became the 3 amigos…even receiving their transplants in the same year! We all started out as facebook friends but now we are like family.

        I really think social media has helped spread awareness to an extent that we would not have been able to do without it. Does your mom use social media now to meet other heart moms? I’m sure she could still benefit from it.

      • #21174
         Brittany Foster 
        Keymaster

        Hey colleen,
        My mom uses social media but she isn’t part of any of the online groups. Although many of the groups help a lot of people, I also think that unfortunately it can start to seem like a competition for “who has it worse”. I know she doesn’t like to see that and get caught up in that drama. She has met many heart parents at the conference that she enjoys talking to. She’s definitely more of an “in person” get together type !

      • #21226
         Jen Cueva 
        Participant

        Brittany, you make a valid point. I took myself out of many FB groups for that reason. Between the competition to see who is worse, the drama was unbelievable.

        I don’t blame your Mom, I love in-person meet-ups.

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