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    • #34241
      Colleen Steele
      Keymaster

      Do you smile big for the camera or run from it because PH makes you feel self-conscious about how you look?

      My son Cullen cringes at pictures of himself prior to his transplant because he looked so unwell and thin. He refers to them as his skeleton pictures.

      As a caregiver, I’m starting to shy away from the camera even though pictures have always meant so much to me. I think I look haggard and hate seeing myself like that.

      Can you relate to how Cullen and I feel?

    • #34254
      Jen Cueva
      Keymaster

      Hi @colleensteele, you certainly don’t look haggard; you always look beautiful in pictures. Like you, I love pictures, but not being in that, LOL.

      KK, my daughter, is the picture Queen. Even Manny takes more pics than I do. I often look at and criticize my pics. Like Cullen, the ones where I was worse and skinnier, I feel look frail and sick. I only like to take pics when I feel good, dressed, and then still “picky,” as my family says.

      For me, this was even before PH. But I have noticed that I tend to be worse about this after my PH diagnosis and my body going through so much.

      Does Cullen enjoy or accept having his picture taken better bow post-transplant?

    • #34266
      Kathleen Grady
      Participant

      first you do not look haggard, your pictures are always beautiful and fun to see how happy you look.

      I do love to have my picture taken, I am always making everyone take pictures with me. Just grateful to be alive and reasonably healthy. 😀

      • #34271
        Jen Cueva
        Keymaster

        Hi @kgrady69, I love your thoughts about photos. Like you and Colleen, I love having and looking at pictures. But, usually, I don’t like how I look in them.

        It took me months to get a new picture for work because of this struggle. But once I take several or more, I usually find one that I am OK with. Do you or @colleensteele do this, too?

        My daughter has always loved taking pics and having her picture taken since she was young. We bought her so many cameras as she was growing up. She also enjoys and still does posing for pictures. But hers always come out good. Maybe it’s like others things; the more we do it, the better we become, including accepting what we think are our flaws. Thoughts?

    • #34267
      Colleen Steele
      Keymaster

      @jenc Cullen is a little more agreeable to having his picture taken now but rarely if they are medical related. Even though he doesn’t like certain picture from his PH days or during his transplant recovery, I think he is grateful to have them. So, that’s something for you to think about. I just agree that I don’t share any of them without his permission.

      Thank you and @kgrady69 for your kind words about how I look in pictures. I really wasn’t fishing for a compliment. If it’s not my weight then it’s how tired I think I look in most recent pictures of me. But, I really do love pictures. They mean so much to me and I realize I can’t nag others to let me take their picture and not include myself in any.

      It seems that how we see ourselves in pictures and what others see are night and day to each other anyway, so might as well just go ahead and let the picture be taken.

      Kathleen I am the same way. I will go out with friends or family and they know that I will eventually ask for a group picture. LOL!

      • #34272
        Jen Cueva
        Keymaster

        Hi @colleensteele, like Cullen, I’m grateful to have pictures of others to look back at.Thanks to you and Kathleen for sharing the perspective of being grateful to have them and be alive.

        I need to start taking more opportunities to be in the pics not removing myself when others want pics. Like you, I, too, want and enjoy group pics, but I’m usually the one volunteering to take those.

        Colleen, I believe that we all think we are either overweight, underweight, tired, or too sickly for pics at times. You’re not alone. But you do look nice and beautiful in all the pics I see and on our video calls.

        You’re right; we see ourselves much differently than others in photos. Let’s try and be in more pictures and remind ourselves that we and others will be grateful to have those later to look back on.

    • #34318
      Carol Volckmann
      Participant

      Kathleen I really admire what you said, you smile and have pictures of yourself. You are just happy to be here and alive!!!

      I shy away from having my picture taken. Scleroderma causes capillaries to break out all over my face and I am self conscious about the way I look now. I also feel tired and haggard especially late in the afternoon. I have tried concealing makeup but it does not work very well.

      I do realize in my head what I see in a mirror is NOT what others see – they are seeing the whole person. I need to remember your words Kathleen and see that I am here and that I am ALIVE!

      Great topic. Important for all of us.

      • #34332
        Colleen Steele
        Keymaster

        @cdvol3gmail-com it is true, people just want a reminder of their loved one. Think about it, have you ever looked at a picture of someone you love and thought, “They look awful!”. I’m willing to bet you haven’t.

        I thought I would point out something else I have noticed. When I go back and look at picture of myself taken years ago I enjoy them more than when they were taken. I feel less judgy about my former self than the current me. I’m willing to bet that a few years from now I will look back on pictures from 2022 and enjoy seeing them. Anyone else feel this way?

    • #34330
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, I, too, tend to shy away from the camera. When my daughter, KK, is around, she enjoys videos and pictures no matter what I think I look like. She says we are all beautiful and the hardest on ourselves. Plus, she says we must start loving ourselves and everything about us. We all have flaws, but flaws and scars define us and make us beautiful.

      Maybe some more men can share their views. Cullen’s views were shared in Collen’s column. How about you, @ripple76, do you like having your picture taken?

      This is undoubtedly an important topic that we all can work on. I’m enjoying reading the stories.

      • #34331
        Colleen Steele
        Keymaster

        Here is a link to the column “Don’t Picture My Son With PH“.

        I would also like to hear how the men in our forums feel about having their picture taken. Is there anything that bothers you about it?

        • #34336
          Carol Volckmann
          Participant

          Just read “Don’t picture my son with PH”. Beautifully expressed, beautifully written. Thank you and Cullen for sharing. ❤

        • #34340
          Jen Cueva
          Keymaster

          Oh, what a lovely piece, @colleensteele! You do such a fantastic job writing about the experiences that you and Cullen have been through and continue to push through. You have such a way with words. I always picture in my mind what I’m reading about.

          Maybe that’s why pictures are so important. They do tell a story. But like Cullen., some images of my worst hospital stay and at my lowest are the ones I prefer not to look through. It reminds me of traumatic times. However, after reading and discussing this topic, I think I should remind myself how far I’ve come and be proud and grateful when I look through those.

          Thank you for sharing your beautiful family with us all. Many will benefit and relate to your pieces.

    • #34337
      Jill Upshaw
      Participant

      Very real question. I grew up having my picture taken all the time and people asking me to run for this and that. I did not really like any of it. As I got older, I liked pictures even less. But now that I am sick, I take more pictures. I have lost a lot of weight and my color is always bad. When I take pictures, I can compare them to see what changes are taking place. That is the nurse in me trying to see if I can pick up on anything that needs attention.

      BUT, the other reason is keeping up with what family I have left. I have not seen my brother in 3 years and I have not seen my sister in 10 years. They don’t travel and are older than me. I send pictures to my sister-in-law and say “this is me today”. I will see my brother and sister-in-law soon I hope and I don’t want to see the shock on their faces when they see me. I look quite different. Nothing like warning them……

      Anyway, pictures are supposed to be fun but they do have other purposes too….

      • #34341
        Jen Cueva
        Keymaster

        Hi @upshtcx, an excellent take on why you now take more pictures. If not, for yourself to see if you notice anything new for your loved ones.

        That is important, and I take pics with my phone every few months to send to my mom. She texts my sister and me now and then and asks for an iPhone pic. I usually tell her that I haven’t changed, and she would still recognize me. Hehe

        • #34360
          Colleen Steele
          Keymaster

          @jenc I am about to turn into your mom! I’m laughing because prior to reading your comment I was thinking about how I hope Aidan will send me pictures often when he moves to Louisiana. He is so picky about what pictures he likes of himself so it’s hard to get him to have one taken let alone share it. That boy better keep his mom updated with pictures!

        • #34373
          Jen Cueva
          Keymaster

          Do it, @colleensteele- it’s funny that my mom is so random about it. Of course, I’m 2 hours earlier than she and my sisters, so thankfully, none at 5 AM yet! But once my younger sis texted back, she was in her PJs and hair on her head; mom said, so, I love you like that, too. She only thought mom would let her slide, LOL.

          Yes, Aidan better keeps his mom updated with FaceTimes and pics; otherwise, let’s get our Matt to go after him. He lives on the bayou in lA.

    • #34346
      ky
      Participant

      This is a great conversation and @colleen and your “Don’t picture my son with PH was beautiful and made me cry a little.

      On this topic, I must say I am a sucker for pictures! Not only are they memories, so precious for family members and just priceless in general, but (and this is so silly) they can remind us that no one is perfect but Perfectly Imperfect… My daughter was struggling with self esteem and we started what we called Bad selfie wars.. Trying to see who could make the worst faces, or have the worst morning hair, and oddly it helped! I think because it helped her learn to Laugh at the Really bad days, she started naming the ache on her face feel better about herself in general … and it spread .. all the kids started doing it! My husband and I cannot leave a phone on a counter because we will be left with 25-30  just AWEFUL selfies, And my daughter upped the anti and made one my screen saver, so my screen saver is a double chinned, crossed eyed, flared nose picture of a Beautiful girl.. AND I LOVE IT! LOL

      I admit that as I age I get a little too aware of those pesky lines on my face, but it really just means I have had That many smiles on my face. (besides I will win the next bad selfie war) I really have no intention of stopping the selfie/picture craze even though my husband rolls his eyes at me quite often for my picture obsession….tee hee

      • #34350
        Jen Cueva
        Keymaster

        Hi @kygon, your share about the bad selfie wars is an interesting take. I love that you mention it shows we are all perfectly imperfect. That’s how I often describe myself, and it’s true.

        Laughter does help us get through the most challenging times. So, I can understand how the bad selfie wars helped your daughter build her self-esteem—laughing as I read your response and pictured those funny bad selfie shots. Too amusing that she saved one as your phone screen saver. My daughter loved taking pictures as a kid and still as a young adult. Like you and Bryan, if we left our phone unattended too long, we came back with many KK shots, mostly making goofy faces.

        I can imagine that screensaver is now one of your favorite treasures. How precious!

        Like you, I love looking through old pictures, and I’m one of my sisters who ask for all pics. Some of my greatest treasures are old pictures of my parents and grandparents, and my daughter, of course.

        It sounds like your daughter’s picture craze rolled over to you; those bad selfie moments continue, it sounds like. Bryan says like Manny rolling his eyes hehe.

      • #34361
        Colleen Steele
        Keymaster

        @kygon it’s amazing how just reading something can change your mood for the day. Hearing about your “bad selfie” war with your kids changed my morning from tired to giddy. Too funny and I love it!

        Remember when everyone was taking pictures of themselves getting their first Covid shot and posting them to social media? When Cullen and I went to get ours I took a picture of him even though he adamantly told me not to.

        I didn’t realize until I looked at the picture back in the car that in order to keep me from sharing it he made a face and stuck a certain finger up in the air. Guess what, it’s one of my favorite pictures of him because I crack up laughing every time I look at it! He’s such a stinker, lol!

        • #34372
          Jen Cueva
          Keymaster

          Hehe, @colleensteele, I love Cullen a bit more after reading this one! Although, it sounds like something Manny would do to me, LOL

          Isn’t it funny that sometimes the worst pics turn out to be the funny ones that make our faves?

    • #34347
      Jill Upshaw
      Participant

      I am the youngest and they always expect me to be bouncing and energetic. Well, that part left a while back for sure……I hate those looks when people are surprised….

      • #34351
        Jen Cueva
        Keymaster

        LOL @upshtcx, you sound like my baby sis. But thankfully, she’s healthy, just overworked, and continues to carry a ton of stress on her shoulders. I often feel like I should be looking and acting younger, but unfortunately, PH and my other health issues affect our energy levels and often our looks. I don’t wear a lot of makeup but no concealer I’ve found can hide the lines under my eyes. I call anything related to illness, battle scars which make us all perfectly imperfect as @kygon reminds us.

        What an excellent conversation starter, @colleensteele by sharing your open and emotional column.

      • #34362
        Colleen Steele
        Keymaster

        @upshtcx it makes me sad that you feel like people are reacting to changes in you. Whether you have PH or not, people change in person and in pictures. If fiends and family are really reacting to the changes in you then they need a reality check because I’m sure they have gone through a metamorphosis too!

        • #34363
          Jill Upshaw
          Participant

          Colleen, Thank you and I agree. I really have gotten some reactions. My sister is much older than me and sick. My brother and sister-in-law are really good people and they care about me. They are in their mid to up 70’s and my brother is battling a lot of health issues also. They just don’t realize how sick I am. Other people get no pass at all…….Funny how people see the changes in others but not as much when it comes to them…

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