What social media do you use the most ? Do you share your health battles?

[jen-cueva]

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.

[Brittany Foster]

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.

[jen-cueva]

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.

[V.R. Peterson]

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).

[jen-cueva]

@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.

[V.R. Peterson]

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.

[jen-cueva]

@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.

[V.R. Peterson]

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.

[Brittany Foster]

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.

[jen-cueva]

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

[V.R. Peterson]

@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.

[jen-cueva]

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

[V.R. Peterson]

@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!

[jen-cueva]

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.

[Brittany Foster]

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.

[Colleen]

@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!

[Colleen]

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.

[jen-cueva]

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.

[Colleen]

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!

[jen-cueva]

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

[Brittany Foster]

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.

[Colleen]

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.

[Brittany Foster]

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 !

[jen-cueva]

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.

[jen-cueva]

Hey, y’all, I discuss the pros of using social media to tell my PH story in this week’s column. Many people find they become burned out by social media. I relate since I’ve been there. That’s why I also share taking breaks and finding a good balance.

So, should you share your PH story? Why or why not? Check out my recent column using the link below.

Let me know your thoughts after you give it a read.

Should you share your story of life with chronic illness?

[jen-cueva]

Since she had trouble posting her reply, I’m sharing a response for @mamabear007.

She says, “@jenc, I loved your article! I absolutely share my son’s story with people I think it will help. For so long, my son went without a proper diagnosis because most doctors don’t know about this illness. Even among PH specialists, there are those who don’t know much about his particular WHO Class.

I want to make sure no other patient ever goes without a proper diagnosis or care because they’re afraid to stand up to a doctor who might be unfamiliar with PH. They need to know it’s okay to advocate for their needs. That’s why I share my son’s story on social media, especially among those who have (or might have) CTEPH or CTED and those who love them.”

[V.R. Peterson]

Thank you for posting my response, @jenc. Thankfully, PHN seems to like me today. 😊

[jen-cueva]

Thank you, @mamabear007, for your encouragement. I LOVE that you mention you don’t want patients to go without the proper diagnosis.

Many fear talking to an HCP because they believe they are much more educated. But when it comes to our bodies, we know what’s best. Self-advocacy is crucial. I, too, advocate not only for myself but for the ones who don’t have a voice or are too frighten to use their voice.

You do much for the CTEPH community and the general PH community. Kudos to you, my dear friend.

[Colleen]

@jenc I love this column so much and will be “sharing it to my social media”! I also second what @mamabear007 stated. Sharing Cullen’s PH and transplant story is my way of helping and supporting those frightened souls just starting out on this journey.

[jen-cueva]

Hi @colleensteele, thanks for your encouragement and support. Yes, I try to remember to share mine when I think about how many are out there and looking for answers. They need to feel less alone and, hopefully, a bit inspired and heard.

We’ve l been there, isolated, overwhelmed, and lost when we find out we have a new diagnosis of PH. Sometimes, it’s the symptoms one is experiencing before a diagnosis that we could help get to a place to get an accurate diagnosis.

I’m grateful for the parents, like you and @mamabear007, who share their caregiver journeys with other parents of PH kids. I can only share as an adult, but having the caregiver experience out there is needed, too. Our caregivers are special angels!

Thanks for sharing my column, and so thrilled to have you back whenever you are feeling up to it, Colleen!