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    • #25494
      Colleen Steele
      Keymaster

      What is that one thing that either family, friends, medical staff or strangers say to you regarding your health that makes you roll your eyes? Why does it bother you so much?

      When my son had PH it drove him crazy when he was having breathing issues and was told in a soothing voice, “Just breath in and breath out…”. I was even guilty of doing this to him. It was an effort to try and keep him calm during a PH episode but it had the opposite reaction with him.

      To this day he reminds me of how little those words helped. “When you can’t breath it’s so irritating to hear someone telling you to relax and just breath in and breath out.”

    • #25510
      Jen Cueva
      Moderator

      This is interesting yet funny, @colleensteele. I can imagine Cullen giving you a daring look when he already cannot breathe.

      I have so many pet peeves, but the worse is, “but you did that OK yesterday, or even last time.” They do not understand that every day is different, and some days I can push my body further. This one certainly frustrates me when I am pushing my body at that moment already. They get a glance and lots of eye rolling-hehe. At times, a few choice words may slip out.

    • #25523
      Colleen Steele
      Keymaster

      LOL @jenc! Cullen is a sweet guy but the king of eye rolls and the death stare. I want to mention that it was his nurse and therapist that got me saying, “Breath in and breath out” in an attempt to keep him calm. Sometimes I would say it I think more to calm ME!

      I can imagine how frustrating it is when people lack the understanding of how PH changes your body daily. I think you are entitled to a few choice words when that happens.

    • #25528
      Jennifer Beaty
      Participant

      I give an eye-roll when someone asks me what did the doctor find out? I tell them Pulmonary Hypertension; then they reply, “Yeah I have high blood pressure too.” I used to let it go. Now I simply reply, “Not even the same thing.”

    • #25530
      Colleen Steele
      Keymaster

      @jennifer-beaty that is an annoying one to deal with but sometimes it’s an opportunity to spread awareness. I know how that sometimes gets tiring too. I have more appreciation for people who respond with a simple, “I’m so sorry to hear that.”

    • #25543
      Jen Cueva
      Moderator

      LOL @colleensteele- I know the respiratory therapist always would tell me to breathe in and breathe out, deep breaths. It does help, but when you are feeling like crap and do not want to be bothered, I am sure it is not what I want to hear, either-hehe.

      I am sure that it did help you at the time, too. Caregivers need to learn deep breathing exercises.

    • #25545
      Jen Cueva
      Moderator

      Oh no, @jenniferbeaty, I can so relate! This is so annoying and frustrates me so much. It is usually the same people who ask this, in my experience, anyway. I would let so much go before, and my hubby and daughter would get frustrated. Now, I will become frustrated and roll my eyes(at least) when people make these comments.

      I also get, “but, you’re too young,” and that started 15 years ago. I now say, “I know, thanks.”

    • #25551
      Carol Volckmann
      Participant

      Wow, all of the above (except Jenn, the one – but you’re too young – cannot claim that one hehe). Let’s add when you are on walk with your friends and you have to stop for a bit and someone always says just go slow one step at a time – no, I am going to stop. Or how about, well as we age medical things happen. What the h… does that suppose to mean? Hugs to you all. ☺

    • #25552
      Rebecca Talkie
      Participant

      Yes, when people equate Pulmonary HTN with plain HTN. So a lot of times, I will start out with “its a rare condition” which everyone knows that plain HTN is not. Or, the “you look fine”. All I can say is Thank You. But I know I am not. Not many people my age need to take a nap in the afternoon. Sometimes I can’t even make it past 11:00 and I get SO tired. Then there is the brain fog. I think that bothers my family the most. I have zero follow through. I forget. Finishing a task in one set time just doesn’t happen for me. I have explained this over and over and it just doesn’t sink in. Or I get treated like I am stupid. Sigh…..

    • #25555
      Brittany Foster
      Keymaster

      Hi everyone ! I wanted to come on here this morning because I have a little time at the start of my day. Something that always makes my eyes roll is when someone suggests “if you change your mind, it will change your body”. I can understand how this holds true for many aspects in life. I have been working on re-training my mind to process trauma in a different way and have been working on seeing the positive in things instead of the negative. As much as that helps put me in a better mood and a more positive mindset, it is NOT going to take away my congenital conditions and my genetics. It just won’t. I can be positive and upbeat all I want, but I am still going to have a heart that doesn’t function as well as others my age and still going to require oxygen from time to time. People who make these types of comments and think this is a cure have clearly never been through something that a juice cleanse can’t fix.

    • #25561
      Colleen Steele
      Keymaster

      @cdvol3gmail-com agh…the ” well as we age medical things happen.”…comment! People don’t say things like that to Cancer patients. I’ve known people who have battled both PH and Cancer and all of them said they received more understanding regarding their Cancer than their PH. It’s so frustrating. I take comments like that as an example of how little people understand or even know about PH.

      I had someone tell me once, “Well, we all die from something.” My son was 8 years old when they said that to me…8!

    • #25562
      Colleen Steele
      Keymaster

      I am so @becca that you experience lack of understanding like that. I know it’s emotionally hard but keep doing what you need to do to keep yourself well. Take breaks, don’t push yourself to finish something if you can’t, and sleep when and as often as you need to.

    • #25563
      Colleen Steele
      Keymaster

      @brittany-foster I couldn’t help but laugh at your comment that they, “have clearly never been through something that a juice cleanse can’t fix.” So true!

    • #25568
      Jen Cueva
      Moderator

      Hehe @cdvol3gmail-com, you are something else! Where are these friends from that suggest “that things happen when we age”? Too funny, thanks for the reminders girls, I will go back home now-JK. I think if we think about it, we could write a book with all of these nonsense and “eye-rolling” comments.

      Hugs back at you, and enjoy your weekend.

    • #25569
      Jen Cueva
      Moderator

      Hi @becca, you bring a frequently missed symptom up, brain fog. I, too, am embarrassed and frustrated when this kicks in. If only they knew how much more this frustrates us than them. I am hopeful that you can try and be patient with yourself. I try to remind myself this daily, some days, it helps. Others, well- it is easier said than done-hehe.

      But, it is no laughing matter when others do not understand and don’t want to try to understand. I, too, get “oh, I have high blood pressures,” also. I usually try to educate but depends on my mood and how I am feeling. Funny, as my blood pressure runs quite low.

      Take care of yourself, hugs to you from Texas.

    • #25570
      Jen Cueva
      Moderator

      Hey @brittany-foster, I am so happy that you popped in. I was going to post an update about your birthday this week. I had to laugh about these “simple fixes,” so many people have given me these fixes through the years. It becomes frustrating for sure, eye-rolling at the least.

      The juice cleanses comment is too funny- I have heard that too. We love you and happy to “see” ya in the forums.

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