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    • #35795
      Colleen Steele

        In what ways are date nights sometimes different for a PH patient or caregiver than it might for other couples?

        In a previous column, “Tips for PH Parents: How to Take the PHright Out of Date Night” I shared how my husband and I had to tweak our date nights for us to enjoy them without worrying about the safety of our PH’er at home.

        For example, I talked about planning dates that offered activities and sitting for children on-sight.

        During dates we also discussed the big thing parents often try to avoid on their nights out – we talked about the kids. If we were out to dinner and wanted to discuss something about the children then that was a welcome part of date night, and it didn’t matter what the topic was about. What better time to talk about what’s on your mind than when you are feeling relaxed and comfortable around your spouse or significant other.

        What about you? Do children, health, expenses, transportation, maybe even social anxiety caused by PH make date night look different for you? If so, how and what plans do you make in order to still enjoy time with your loved one?

      • #35798
        Jen Cueva

          Hi @colleensteele, this is such an excellent resource and reminder that those with PH and our caregivers are unique. Your examples of how you and Brian were the only ones that could manage Cullen’s pump are critical. I can only imagine you out enjoying dinner and the nervousness y’all went through, especially if your cell phones went off. I bet you continue to jump when your cell phone rings and you’re not at home.

          A parent of a child with a pump and other complex treatments is always on call. Although parents are always on call when our kids are small, this is a whole different level.

          As an adult with PH, I know dating is often different for Manny and me from other couples our age. However, I’m grateful for all we can share and enjoy.

          When I’m not feeling my best, it may mean staying in, watching movies, and resting while we enjoy our favorite foods. Date night doesn’t need to be expensive because we all know how much life with PH costs. It’s more about enjoying time together.

          I like to use Groupon to find deals on date nights and adventures that we couldn’t afford at regular prices. Has anyone else used discount sites like Groupon or others to find new, affordable date nights and adventures?

          Colleen, that closing quote is so fitting for you! I love it!

        • #35831
          Pam Muell

            Is it just me or do most folks give you a “look”when you come walking in carring oxygen.I feel so conspicuous going into public places most of the time.I tend to stay home most of the time because it’s either too,humid,and hot.I get flare-ups when the weather changes at times.My endurance has decreased also so I have a hard time getting around if I have to walk very far.Then I start feeling resentment and frustration.

            • #35846
              Jen Cueva

                Hi @pam-muell, you are not alone in feeling all eyes are on you when you walk in with oxygen. But after wearing oxygen for almost 18 years, I finally realized that most of the time, it’s our mindset, and those folks may wonder about our story. Or, as Colleen mentions, they may not be thinking anything at all.

                Mindset is vital when living with a rare disease like PH. We must focus on what we can enjoy and not worry about the rest. Who cares what others may be thinking anyway?

                If you’ve been around at all, all have opinions about whether we may be wearing oxygen or not. People can be rude and insensitive, but we can also work on how we plan to respond to these actions.

                I realize that if it’s hot and humid and you’re already struggling to breathe, it may not be worth it for you to be outdoors at those times. Find times and seasons that you can enjoy being out. During the summer, maybe do things earlier in the day or later in the evening to avoid the hottest hours.

                If you’re like me, the mornings are usually better as I feel I am done by about 3 PM most days. We must learn to listen to our bodies and learn new ways to do things we enjoy while managing PH.

                Do you and your husband have date nights at home? What types of food do y’all enjoy? Do you watch movies, read, or just chit-chat?

                It doesn’t have to be complicated and should be where you feel most comfortable.

            • #35834
              Colleen Steele

                @pam-muell my son is familiar with the look and so am I. Funny, people would often look at my child on oxygen then look at me and I often wondered if it was a look of sympathy or accusation. But in reality I think often it is a look of “nothing”. People look and sometimes I don’t think they even realize they are. Their eye go to something that looks different but they aren’t really thinking anything, and if they are my son always said, “So what”.

                What makes you happy at home? Are there things that you like to do there that you enjoy?

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