This topic contains 34 replies, has 5 voices, and was last updated by  Jen Cueva 2 months, 3 weeks ago.

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  • #19150
     Brittany Foster 
    Keymaster

    In my latest column from last week, I wrote about the sides of me that most people don’t see. It’s not uncommon to just see people’s highlight reels of their life. Especially with social media, it makes it hard to know the “real side” of people and sometimes the “true side” of ourselves. I have been working on being more honest about my own struggles in hopes of helping others to share what they may be going through too.

    In my column I wrote, “The other side is what isn’t seen as often. It comes out in front of trusted medical professionals and those closest to me. These are the emotions I keep inside until I can’t anymore. Most people aren’t aware of my crippling fear of the unknown. They don’t know the anxiety that keeps me up at night. Most people don’t see this side because it’s a part of me that doesn’t feel like “me” at all.”

    Can you relate to this article? What are some parts of you that most people don’t see?

  • #19158
     Jen Cueva 
    Participant

    Great article, Brittany! I definitely can relate. I try to be as positive as I can in front of everyone, they don’t see the pain, the fears, or. anxieties that I often deal with. Since I have started here in the forums and also writing, I have been more open to some extent. It is still tough when my old self was always the positive, happy Jen. I hide on my couch or under the covers when this happens.

    I just wrote something relating to this. I appreciate your honesty and I know you have helped me as I am sure many more. If being more open helps others, I think that is what I need to do. Thank you for all you do to inspire as well as bring up the tough topics.

    • #19167
       Brittany Foster 
      Keymaster

      Jen,
      I’m so glad that being on these forums and your writing has been helping you process and uncover some of these difficult feeling and emotions. I know there are so many sides to all of us that not everyone sees. You never know who needs to hear your vulnerability. I know that I am not alone in my feelings but sometimes it is hard for people to articulate them. Knowing I can help give a voice to others is really encouraging and helps me love what I do 🙂

      • #19192
         Jen Cueva 
        Participant

        Thanks Brittany! I am inspire so much by you. As long as I am helping others, I am serving my purpose here and in this world. I am grateful to have this forum as well as the columns to learn and inspire as well.

  • #19161
     Carol alexander 
    Participant

    Hi I know I have been quite for a longtime have been going through a rough time on oxygen 24/7 hard adjustment for me as I guess it is for everyone.
    I have to turn my whole life around.i want to thank the community for all their tips and comfort it has meant a lot. Brittany and Jen you both have been a life saver. Will talk later.

    Carol

    • #19162
       Jen Cueva 
      Participant

      Carol, I’m so glad that you updated us. You have definitely been through so much lately. I hate to hear that you’re still having such a rough time.

      I’m sure that requiring your oxygen 24/7 will take some adjustments. I hope that after a while using it all the time that you will see some benefits.

      This forum has some awesome people here, including yourself and we all learn from one another. Thanks for your kind words. Please don’t hesitate to reach out anytime. Sending hugs to you.

    • #19164
       Brittany Foster 
      Keymaster

      Carol,
      It is always so good to hear from you! I know the support from this community and our members like you really makes a h3ige difference. Being put on oxygen for 24/7 sure makes you feel like a fish out of water most days. The people looking at it are probably wondering why you have it. I have had people come up to me and ask which I prefer over just the gawking looks! Maybe you will be able to spread some awareness !

    • #19177
       Colleen Steele 
      Keymaster

      It’s good to hear from you Carol. Transitioning to supplemental oxygen 24/7 is challenging both physically and emotionally. I know when my son had to it was a very hard reality for him to face, but in time he was grateful to have it. It’s so not fair that it’s needed but hopefully you are finding that it is helping you. My thoughts are with you.

      • #19183
         Brittany Foster 
        Keymaster

        Colleen an Carol,
        you’re right that it is very hard both physically and mentally speaking. I still struggle with it every single day. When I start to see the ways that my body adapts in a negative way then I really am forced to see how badly I need the oxygen. I would suggest paying attention to the things you are able to accomplish WITH the oxygen that you may not have been able to do before. Seeing even just small changes really can start to add up. This will make the emotional side of wearing it a lot easier and physically you will start noticing good changes. Be aware of the positives too!

      • #19187
         Colleen Steele 
        Keymaster

        Brittany, I love your suggestion of paying attention to the things you are able to accomplish WITH the oxygen that you may not have been able to do before. I wish I had thought of those words of wisdom when my son was going through this. He realized this on his own eventually but this is great advice for someone just starting out on supplemental oxygen. It might help them reach acceptance faster.

      • #19198
         Brittany Foster 
        Keymaster

        I still go back and forth with accepting it vs not accepting it but there are definitely added bonuses that go beyond just being able to breathe better (at least for me anyways !) Things just seem more regulated and my mood definitely improves when I use it.

  • #19176
     Colleen Steele 
    Keymaster

    Brittany, something that people like to say is, “Well, you look like your doing well.” When deep down you really aren’t ok both myself and my son would find this comment annoying. A part of you want to scream, “No, I’m not ok!” but we don’t do that, do we?

    I’ve been feeling a bit vulnerable writing my column every week because I’ve been sharing emotions and experiences that until now, I kept buried. I’m going to continue though, with the hope that voicing my true feelings will help others. I know that both your column and Jen’s have touched so many. Reactions to the columns are an eye opener that sometimes people really need to hear the reality and not just be shown the courage.

    • #19181
       Brittany Foster 
      Keymaster

      I have learned that courage is SO MUCH MORE than just putting on a brave face. Courage is actually shown when people break down, cry, accept the hurt for what it is and express their emotions. To me, that is courageous and just as courageous as holding things together and seeming to have it all figured out. Admitting when we are feeling defeated and admitting the struggles we have is so brave !

      • #19182
         Colleen Steele 
        Keymaster

        Brittany, I very much agree with you and it’s something as a caregiver that I also eventually learned. Showing our emotions helps others to be more understanding. They can only react to what they see. As my husband likes to say, “I’m not a mind reader,” LOL!

      • #19185
         Brittany Foster 
        Keymaster

        I get that a LOT from my boyfriend too LOL! It is hard when it is difficult to express feelings of anger and frustration with my own body and it comes out as anger or frustration to others that I love. Sometimes it seems hard to control the rage I feel but the ones that live with us get to see us in all our “glory” the good, bad, and ugly !

      • #19194
         Jen Cueva 
        Participant

        Too funny, just this weekend, my hubby said those exact words to me. LOL

        Brittany, so true, they get our good side, not so good, and then the ugly,or “hott mess” as I say. Thanks goodness they can deal with us on all of those days. Hehe

        I am sure some days my hubby must think that I am a train wreck! Do y’all feel like this?

      • #19203
         Brittany Foster 
        Keymaster

        I feel like this a lot, it mostly comes out when I am really sick and I question, “why do you even want to be with me!?” When I can’t do much, I really beat my own self up over it and a lot of my insecurities come to the surface. This can lead to some pretty intense arguments but then at the end of the day I know that my boyfriend still chooses me through the chaos and that is what matters the most.

      • #19206
         Jen Cueva 
        Participant

        Brittany, you’re definitely not alone in this! I’ve been married and had PH now over half our married life. I still struggle with this and the insecurities. It makes for some tough arguments but I know my hubby loves me through it all.

        It’s the toughest, as you mentioned when we feel our worst. I always feel awful after the arguments and feel like it’s a total waste of my energy, too, if that makes sense.

    • #19193
       Jen Cueva 
      Participant

      Colleen, It definitely can be emotional when trying to write such vulnerable columns. As you mention, our feelings often resurface and it can be tough. Some weeks I feel like it is tougher than others.

      I agree with Brittany that being strong is also asking for help and admitting our struggles. I think for some like ourselves, who bottle things up, it may be tougher. I know for myself, I have “ hid” some areas and days and only show the positives. We need to share our struggles, too. So many can learn from another person’s journeys. You are impacting so many parents and other patients.

      I love you both and just love the support and respect we all can share.

      • #19202
         Brittany Foster 
        Keymaster

        I completely agree, Jen! I always love getting on here and talking with all of you . It really helps me to unwind after a hard day and allows me to share what I’m going through with people who I trust to really “get me”. I’m glad I have found that group of people through these forums and it just makes my heart that much happier!

      • #19205
         Jen Cueva 
        Participant

        I totally agree, Brittany! It’s awesome how we ”get it ”, and it offers such a big relief and support.

        How were your appointments today, BTW?

  • #19230
     Colleen Steele 
    Keymaster

    Ditto Jen! One of the few positives from the PH experience is the bond and sense of family that develops among the community. You develop such an affection for people, and many whom you have never even met!

    • #19257
       Jen Cueva 
      Participant

      Yes, Colleen! Bonding here within the PH forums,I feel we are a more, “close-knit” community.

  • #19252
     Beverly 
    Participant

    Thank you Brittany, the side people don’t see are the fears that I keep deep down, of an unknown future out of my control. Rarely do I let those feelings come to the surface because I am not quite ready to deal with that. I appreciate everyone’s thoughts and feelings you share.

    • #19258
       Jen Cueva 
      Participant

      Beverly, how are things going with you this week?

      I find that I struggle with my true feelings often. I hid many of my fears and anxieties for years. I have to tell you, that as I start to share more, it becomes easier. I find it offers some relief for myself as well!

    • #19269
       Brittany Foster 
      Keymaster

      Beverly,
      I can empathize with these feelings for sure and I know others can too. It is hard to know that we don’t have much control over what the future holds and it’s particularly scary and unsettling when our bodies are fighting against what we WANT to be able to do. That’s when my control really kicks in and I try to control the things I can even more. What are some things that you try to focus your mind on when your brain starts thinking about your future that is beyond your control? What keeps you in the present moment?

      • #19296
         Jen Cueva 
        Participant

        Great question, Brittany!

        Yes, I understand that when we lose control in various ways, we tend to want more control. I, too, attempt to stay focused on the smaller things, such as my control over what I eat, watch, or say. Other days, even what I wear is meaningful. I remind myself that I do have control over my thoughts and emotions. This is crucial as we learn this, it can make an incredible difference. I feel like if I am in control, of just a few things, my thoughts are a top priority as my mental wellbeing is improved. Therefore, my overall day usually is a more positive day.

      • #19312
         Brittany Foster 
        Keymaster

        Jen,
        I’m glad you have been making the shift in your thinking to what you CAN have control over. It’s hard to maintain that positive attitude for sure, but you are right that we DO have control over how we react to things even if they don’t always go the way we want them to. Sometimes I need to take a step back from having a mental breakdown and realize what I have in front of me to work with. Taking mental breaks and pauses through the day is really helpful for me and helps me stay more in control of my thoughts and actions.

      • #19355
         Jen Cueva 
        Participant

        Brittany, thank you! I’m slowly making that transition of mindset. I also feel that taking mental breaks is a necessity for us. Some days, I may need more mental breaks than others. I’m sure you can relate.

      • #19365
         Brittany Foster 
        Keymaster

        Jen,
        I absolutely can relate to what you’re talking about. mental breaks are so important for me especially if I am starting to feel particularly overwhelmed or like my emotions are getting the best of me. Usually I like to take space when this happens and be around people who won’t feel to sensitive about my reactions and those who “get it”. My mom always understands when I have my moments of anger and frustration and I like to hang out at her house with my sisters and her for that extra bit of support during those times. If I get really bad it does put some strain on my own relationship so I try not to stick around when I catch myself being overly moody or needing my “time” for myself. It is a hard balance.

      • #19370
         Jen Cueva 
        Participant

        Hi Brittany, Taking that much space is critical for our well-being as well. I’m pleased to hear that your Mom and sisters are such strong support for you.

        Unfortunately, my sisters and I aren’t super close. One lives about 45 minutes away. My mom is also out of state taking care of my grandmother. I undoubtedly miss my mom. It doesn’t matter how old we are, those mom hugs are much needed.

        I also agree finding balance with this is difficult. Our relationships can become strained.

      • #19375
         Brittany Foster 
        Keymaster

        Jen,
        I consider myself very fortunate to have a family that is all so close with one another. We all live in the same state too (the whole state takes 40 minutes to drive through) . We are spoiled and think 30 minutes to drive to the one that lives farthest away is far haha!

        But you’re totally right that the ups and downs really can put a strain on relationships, especially with the people we are around more that witness all of these emotions we go through and have to be on the receiving end of things sometimes.

      • #19386
         Jen Cueva 
        Participant

        LOL, Brittany, I forget you’re in the tiniest state. I think that’s cool. I’ve mostly lived in Texas and California, which are both huge states, to me.

        I’m happy that you’re all so close. 30 minutes can be long, especially if you need some sisterly advice and hugs. I love your connection with your sisters. ( family, in general) I’m sure they help you through the toughest days.

      • #19402
         Brittany Foster 
        Keymaster

        They really do. My sister that is closer in age to me really has taken a more active role in my health and is more interested in it now than she was before. I bet she always knew what was going on, she just is a lot more accepting of my conditions than she used to be and really feels for what I go through. My other sister is 5 years younger than me. She is really helpful in her own ways too and her girlfriend is great and supportive for her. I think it is important that siblings receive support too.

  • #19418
     Jen Cueva 
    Participant

    That’s awesome, Brittany, that your sister has an interest in your health. Neither of my sisters seems to want to learn, and that’s ok, too.

    I realize that they both have kids and occupied with work and their families. I’m glad that they have their own family life. As you mention, our siblings need support, too.

    My older sister is about a year and a half older than me. My baby sister is 4 years younger.

    I’m certain I will see them this weekend as my Dad is planning to come to visit. Most holidays we try and cookout or something, so we do talk and visit.

    I’ve seen pics of both of your sisters. I love seeing them with you and supportive. They can be supportive in their own unique ways.

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