Pulmonary Hypertension News Forums Forums Life Challenges Mental Health Do People Really Know What You Are Going Through?

  • Carol alexander

    Member
    November 18, 2021 at 2:50 pm

    No no one could the shortness of breath the oxygen tubing getting caught  on things when you walk the sheer frustration and the getting ready to leave the house it take forever making sure you have enough oxgen.I have an Imogene 4 but it doesn’t really last that long so I have to take the charger with me to doctors appointment having to look for outlets to plug it into so embarrassing .so I stay home a lot . Winter is the worst when it’s cold I can’t breathe I feel so awful.

    • jen-cueva

      Member
      November 18, 2021 at 6:13 pm

      Hi @carol-alexander, Oh no, I am sorry to hear of your oxygen tubing dilemmas. Do you find you get caught on cabinet drawers and doorknobs?

      I, too, have an Inogen and carry an extra battery with me, and usually charge it in the car while driving. But, I can imagine the frustration when at your doctor’s office and trying to locate an electrical outlet to recharge. Bending over and getting these things found can also take a toll.

      I am sorry, and many have no clue and understand how you feel or what it takes to get to your appointments.

      Can you ask about an extra battery? I had to purchase mine, but it’s well worth it.

      I hope that you have some family or friends to come to check in on you during the winter months. Have you thought of contacting Meals on Wheels or something so someone comes by and brings you warm meals when you can’t get out on the coldest days?

      I am thinking of you and sending you warm hugs and love.

    • Colleen

      Member
      November 19, 2021 at 6:48 pm

      @carol-alexander I have been thinking a lot about you. I can’t imagine what you have been going through since your husbands passing. How are you doing? We care a great deal about you and I hope you know we are here any time you need us.

      In regard to the oxygen, my son can sympathize. He felt self-conscious about his oxygen. It was the noise that bothered him most when in church or the few times he went to see a movie. I use to tell him it’s like a pimple, it bothers you more than other people. I don’t think that ever consoled him any.

  • jen-cueva

    Member
    November 18, 2021 at 6:06 pm

    I love this important piece, @colleensteele. I find it interesting how many people tell me that they”know.” In reality, they have no clue, but I try to understand their “knowing” as they hear me instead of actually knowing what I am feeling and going through.

    Poor young Cullen for missing that bakery field trip. I would still be giving you those glares, too, after all these years.LOL.

    First, missing the bakery trip, then the dog ate my treats; wow. Not a great day was it for little Cullen. I need to send him some bakery treats, I guess. I just realized that I missed his birthday yesterday, too. I hope that he enjoyed something yummy from the bakery to celebrate.

    You do such an awesome job at sharing important topics and examples. I hope that you are on the mend, Colleen.

    • Colleen

      Member
      November 19, 2021 at 6:52 pm

      @jenc I thought…we will laugh at this someday. Well, not exactly. It’s a sore spot in Cullen’s memory. The darn dog eating the treats was the last straw. I can still hear the sobs when Cullen discovered they were all gobbled up by our lab.

      At the risk of jinxing myself I will tell you I am all better! I just downed the last of the prednisone and finished the antibiotic a few days ago. Praying I don’t relapse again! But this is the best I have felt in months.

      • jen-cueva

        Member
        November 22, 2021 at 2:23 pm

        LOL, @colleensteele, I bet he loves passing by a bakery so that he can give you a hard time.

        Yay for prednisone, and you are feeling much better. I hope and pray that you don’t relapse again. You have been doing that for too long. Thanks for that update; that made my day.

  • brenda-denzler

    Member
    January 25, 2022 at 5:23 pm

    I’m new to the site and just found this conversation. And no, people don’t.

    I owe my DIL, son, and grandkids to host a major holiday meal. I should have offered this Thanksgiving, but I just couldn’t. I couldn’t picture myself cleaning the house, shopping, cooking…. The whole magilla. Just not enough energy and stamina for all that effort. I wrote a note of apology and explanation to my son and DIL, explaining the situation. But since that time I’ve been getting the cool shoulder from them. I don’t think they really get it. Maybe if I one day have to have oxygen, they’ll take it a bit more seriously?

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