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    • #20988
      Colleen Steele
      Keymaster

      Recently I read an article about things you should never say to patients and caregivers. The top two comments that makes both me and my son cringe are: “Everything happens for a reason,” and “At least it’s not Cancer!”

      What are the top things you wish people would refrain from saying? Do you have a response to these comments that you have found to be effective?

    • #20994
      Brittany Foster
      Keymaster

      “At least you look good”. I don’t like the focus on outward appearance but I know that it is a well meaning compliment. I take it as a compliment but it’s still one of those things that irks me. That and the “hang in there!” comment. Or the TOP favorite is the “have you tried yoga?”

      The “at least you look good” I usually reply with “I had to be blessed with something, if it’s not a good inside body then it’s some good looking genes for the outside!”

      For the “hang in there” I usually just say “yep, I’ll keep ‘livin the dream’ ”

      “have you tried yoga?” – yes, yes I have. LOL

    • #20995
      Colleen Steele
      Keymaster

      Brittany, I snorted a laugh at the “have you tried yoga,” question. It sounds like a line from the 80’s movie, “Heathers”. Have you tried yogaaaa? LOL!

      No, the “At least you look good” comment isn’t helpful either. My son always wore a rosy flush from his Flolan and other meds and I would often hear, “Well he looks healthy!”. It made want to carry around his test results to show just how sick he actually was.

      Hey, but Brittany – just hang in there! Agh!

      • #20998
        Brittany Foster
        Keymaster

        LOL I love the sarcasm this morning! This conversation is right up my alley ! “KEEP HANGING IN THERE!” haha I could scream!!!! also yes, when my o2 levels or co2 levels are off I sometimes get a bright red color and look really flushed and people are like “your coloring is great!” Like jeeez thanks, feel like I might vomit and pass out but yayy to my red cheeks. It can feel invalidating and I think that’s why I get so angered by the comments about my looks. I feel like I have to prove my medical conditions a lot and I hate feeling that way.

        • #21021
          Colleen Steele
          Keymaster

          Brittany,
          You should hear how my family talks to each other. We thrive on sarcasm!

          I’m smiling and laughing while reading everyone’s comments. They are awful to hear outside of the forum but sharing them with each other gives off a nice feeling of unity. We all know what it’s like hearing these things and together we roll our eyes and bite our tongues.

    • #20996
      Steve Sallee
      Participant

      My absolute favorite: “How have you been feeling?”. You proceed to answer out of politeness and they immediately change the subject. I really would prefer they NOT ask if they really don’t want to know. That would be better than the faux concern.

      • #20999
        Brittany Foster
        Keymaster

        My personal favorite is when I tell people the truth and tell them the things they don’t want to hear after the “how are you feeling” comment and they say afterwards, “that’s good. I’m glad you’re doing okay!” … like did we NOT just have a conversation together, were you even listening to ANY part of it? Denial at it’s finest

    • #20997
      Steve Sallee
      Participant

      While I’m here: Anyone have any feedback on the use of Prednizone? It really helps me breathe better at the altitude my shop is at and it can actually help me work better. Makes my feet and ankles swell, but other than that, I am not getting any other side effects. Long term, maybe? How long can a person stay on it?

      • #21000
        Brittany Foster
        Keymaster

        Hi Steve, I can ask this in a separate forum topic under “treating PH” . I will tag you in the post.

    • #21002
      Carol Volckmann
      Participant

      You don’t look sick, it’s great you are still getting around, have you tried this new diet – it has helped many … and how are you feeling, then change the subject. All of these just make me want to scream. I am so sorry Brittney and Colleen I used the term hang in there when telling you about how I visualize tieing a knot and hanging on when I feel like I am at rock bottom. I really feel bad, that expression offended you.

      • #21003
        Brittany Foster
        Keymaster

        CAROL!!! OMG please never ever apologize for saying that!!! I’m referring to when people say “hang in there” just to fill a void of awkward silence. In NO WAY would I ever take it that way coming from you or from someone who truly gets it!!! Your rope image was quite literally what it is like to “hang in there” and I understood every single word and knew that your “hang in there” was coming from that genuine place. THANK YOU!!!!!

      • #21019
        Colleen Steele
        Keymaster

        Carol,
        I didn’t even flinch when you said that! I’m not sure how well I can explain my thoughts on this. I think when comments are made from one patient or caregiver to another, such as, “Hang in there,” it’s acceptable. We have a better understanding of what the other is going through and no how to read between the lines when that is said.

        When “outsiders” say that, like Brittany expressed, it’s often to just fill a void. There is lack of real meaning behind it. Make sense?

        We always appreciate your thoughts and feedback. Keep them coming!

    • #21004
      Carol Volckmann
      Participant

      Thank you Brittney for getting back to me – the very last thing I would NOT want to do is to offend but, if I ever do, I would want to know right away so I would be able to clear the air.

      You have been on my mind and I do hope you were able to attend the concert last Thursday.

      • #21005
        Brittany Foster
        Keymaster

        Carol,
        I honestly would have such a hard time taking ANYTHING offensively coming from people who truly “get it” . I can’t even begin to express my gratitude for every single one of you on the forums. I always love talking with you and catching up! And I was able to attend the concert and it was honestly one of the best days of my entire life. I can’t wait for you to read about it in my column that comes out tomorrow!

        • #21020
          Colleen Steele
          Keymaster

          Brittany,
          I’ve been anxiously waiting to read the Carrie Underwood column! Can’t wait!

    • #21011
      Carol Volckmann
      Participant

      Way to go Brittney! We cannot wait to read all about the concert so happy for you!
      We sold our home and are traveling the country in our RV with our golden retriever, Spirit. Left my home state RI visiting relatives (Tiverton) and now just leaving the Adirondacks to head south again – colors were/are spectacular!
      Always with a hug and love.

      • #21029
        Brittany Foster
        Keymaster

        Carol,
        OMG I DID NOT know you lived in RI!!! I am also from Rhode Island. How did I not know this !? We need to meet in person!

    • #21022
      V.R. Peterson
      Participant

      “It could be worse”

      “Have you tried xyz herbal treatment? It helps xyz conditions.”

      “Why are you so sick?” (insinuating that either my son or his mother had done something to cause this or was being divinely punished)

      I was guilty of the first one before my son got his official diagnosis, while he was still going through testing and I had no idea how bad it was — I was trying to ease his stress, and I still feel guilty for making his stress level much, much worse. I can picture my mother saying the second two, as she has said those things to my siblings or my siblings’ children when they got drastically ill.

      • #21030
        Brittany Foster
        Keymaster

        VR, I hate the “It could be worse” comment. Like yea, it COULD BE but it also COULD BE a lot better! ughhh! So sorry you have to hear comments like that. My personal “favorite” too is : “Are you ever going to be better/ feel better?” Like hmmmm, let’s look up the definition of chronic. I have to explain to people over and over again that I’m never exactly “better” there are just less worse days.

    • #21024
      Carol Volckmann
      Participant

      Thank you Colleen. I always look forward to hearing your thoughts. This forum has been so helpful!! ☺

    • #21066
      Carol Volckmann
      Participant

      Hi Brittney- I have tried to reach out to you but have been unable to
      Please let me know how I can reach you.

      • #21068
        Brittany Foster
        Keymaster

        Hi Carol,
        I will reach out to you through text so you have my number. For your own privacy, I deleted the part where you shared your number on the forums but I definitely will reach out to you today at some point. I apologize, the last day has been pretty busy with getting my internet shut off by complete accident. Social media is great but when something goes wrong it’s like my whole day is thrown off! Talk soon xo

    • #21041
      Carol Volckmann
      Participant

      Right now we are just starting south again from the Adirondacks. Where in RI do you love? We would LOVE to meet you in person!!! If possible.
      ☺❤

    • #21045
      Carol Volckmann
      Participant

      Brittney, to reach me
      Text or call – ❤

    • #21108
      Jimi Mcintosh
      Participant

      Most people mean well, they are at a loss of words or surprised by our appearance. Just imagine them telling you how you really look after a bad episode, “damn you look like the walking dead”. Lol. It is not easy to look your best , when inside you feel your worse. I hate those people you know that try to avoid you, rather than just saying hello, or just saying I hope you are feeling better. So many times, I am wheezing, gasping for air, maybe coughing and people are covering there mouths or putting distance between you.
      Some days, I want to wear a sign or a shirt that says “I am ill, I am not contagious”, makes you wonder if you went into respiratory arrest , would anyone give you CPR?
      A church I went too talked about reaching out and helping the sick and people down on their luck. After being diagnosed, disease progressing-1st couple of weeks a phone call, brief visit, after that nothing. They meant to call, but misplaced your number. Same number you had for 25 years

      • #21121
        Colleen Steele
        Keymaster

        Jimi, that is such a good point! Sometimes it’s silence that hurts more than what people say!

    • #21109
      ronald cole
      Participant

      I hope this is related. I am 78 yrs old and on the outside I look passable but when these Medicare, and recently Medicaid people come in to see or evaluate me they say ” you look good, we might be able to get you some modest assistance, (because I live alone with no family in a strange area, I lost my home and possessions in hurricane Irma”.) They look at a 78 yr old guy in my chair, cannot walk, can’t bend over because of back pain, and half out of breath because my PH is getting worse and I am housebound because of the 13 huge steps into my apartment. Most of these ladies are so big they can not fit through my door, are huffing and puffing making one trip, they suggest I just go out and take a stroll when my balance is horrible, I fell down twice and rolled down the hill and fractured my ribcage twice. They sit there looking at me and say, I will try to get you Medicaid, which will help me considerably with my laundry, changing my bed, cleaning and so forth. I got so sick of them, I called Medicare, Medicaid and any government office that would listen, raised hell and told them to do their job, do not send out one more “assessment” person and I want my benefits I should have had a year ago. The result. Now I have tons of people calling me to arrange all the help and benefits I can handle, so many services. Sometimes you have to demand, I told these people, How the hell do you know how I feel or how sick I am. They did not even know what PH was. Sometimes you need to clear these people heads, sitting around listening to some dope telling me how I feel is not their job. That is exactly what I told them and I told them I was writing the governor and a personal letter to President Donald J. Trump if they did not get serious about my case. I had to write this because it just gives my great friends here in the forums that the old Marine Corps shakeups are what we need sometimes to get through this red tape. Feel well, my friends. We used to call it a ” Head Clearing Ron Cole

      • #21217
        Colleen Steele
        Keymaster

        @texas2018 I’m glad you spoke up! It is hard to do but sometimes you really have to in order to get results. It’s always good to hear from you!

    • #21171
      LaDonna Molina
      Participant

      When asked how I am doing, I find it easiest just to respond “as well as can be expected”. Those that truly want to know how I feel will ask me further questions and those who don’t will move on to the next topic of conversation. This is kindest response for both me and the one asking.

      • #21177
        Brittany Foster
        Keymaster

        I really like the “as well as can be expected ” comment
        It helps to leave the conversation more open to if they want to know more or if the conversation will just end there. I am usually sarcastic with my comments so sometimes it’s hard for people to judge how I’m actually doing.

        • #21197
          LaDonna Molina
          Participant

          I can be pretty sarcastic too, hence the “kindest response for me” part! LOL. My dad is the one that I first heard using that comment as he has been sick for many years too and I decided it was a great response for someone with a chronic and/or terminal illness. I’ve been using it ever since!

        • #21208
          Brittany Foster
          Keymaster

          For sure! I’m glad that your dad was the one that introduced you to this comment. My “go to” comment is something along the lines of “how are you?” me: “oh you know, just LIVING THE DREAM!” every time I tell myself I won’t say it, but I have to LOL now I can’t stop it.

    • #21229
      Aubrey
      Participant

      “You don’t look sick” and my response is raising my shirt and saying “you see this pump it’s a Remodulin subq and I don’t have it in my stomach for looks or for fun, it’s keeping me alive along with two pills I take.” They always say oh and that’s it. I also donthis when people get mad for me parking in handicap.

      “How can you be sick if you’re out doing things?” I always say I have IPAH and it’s on the inside nonvisable to the eye unless I raise my shirt and show you my pump. I take meds and they help me function as close to normal as possible. I also have God in my life and just because I have a chronic condition doesn’t mean it owns me or controls me.

    • #21881
      Jimi Mcintosh
      Participant

      I give those that speak or inquire about my health, “kudos”, the ones that try to avoid me , my sympathy and best wishes that they remain in good health and that they never have to walk in my shoes.

      No one has heard of PH, it could be like cancer, HIV, mumps, measles or just anything contagious. Start coughing in line at Walmart and you have the line by yourself. Somehow, we have to raise everyone’s awareness of PH, to get recognition and funding for research

    • #21929
      Margaret
      Participant

      I’ve started saying “Pretty good shape for the shape I’m in” – and it actually makes me feel better.

      • #21938
        Brittany Foster
        Keymaster

        Margaret,
        That’s a really good response actually. I usually say something similar but it usually is “doing the best I can be doing.” Which is more than true for me. I always give myself a hard time but in reality I really am always doing the best each and every day even though each day that may look a little different from the last.

    • #21961
      ronald cole
      Participant

      I am just generally pissed off when a caregiver that comes in from Medicare and says “YOU DON’T LOOK SO BAD” another one is ” you should not sit in that chair, get up and move around you will feel better”. I told the lady the other day to GO HOME AND READ UP ON PULMONARY HYPERTENSION, AND DO NOT COME BACK UNTIL YOU UNDERSTAND THE DAMN DISEASE AND WHAT I AND YOU ARE DEALING WITH” I am not kidding I am so sick of these people “kind of” looking down at me like I am a lazy ass on days that I am suffering. I am 79, shot near my spine, and the pain is always 8 out of 10 even after injections for pain, then the overall weakness from PH and made up my mind I am finished making excuses for my issues. I am sorry my dear friends, only you will understand, I am pisssed off, and I have begun to say, like I did yesterday to a caregiver, who is a lazy ass herself, “If you ask me one more time about my Illnesses, you can pack you little purse and get your butt out of my house, your nonsense is making me worse. She said, ” OH, MR. RON I WON’T DO THAT AGAIN,” I SAID “GOOD.”

      • #21973
        Brittany Foster
        Keymaster

        Hi Ron,
        I can definitely feel your frustration through this post. I am truly sorry that you have had to deal with ignorance. I was just in the hospital myself on Monday and a doctor in the ER had the nerve to say to me “stop making so much noise, there are really sick people here” when I was crying and in pain. I felt like slapping someone. It was awful and terrible to hear, if they only knew how much I have gone through in the past few months they wouldn’t have ever said something like that to me. So I can feel your pain and your frustration. Hang in there and just know that you have people in your life like all of us that truly do “get it”. Sometimes I have to remind myself to take a few minutes when I am feeling overwhelmed that doctors don’t understand and I have to remind myself that even they need explanations sometimes in order to get to a better level of understanding.

    • #22821
      Jo Ann white
      Participant

      Ever since inogen started advertising so heavily everyone seems convinced that all I need to do is carry around a little purse that I can recharge in the car. Since I am on 5-6 liters 24/7 none of the portable condensers will provide enough oxygen for me to even get to the mailbox! But people keep repeating this advice over and over. Wish it were true but not….

    • #22822
      Jo Ann white
      Participant

      Ever since inogen started advertising so heavily everyone seems convinced that all I need to do is carry around a little purse that I can recharge in the car. Since I am on 5-6 liters 24/7 none of the portable condensers will provide enough oxygen for me to even get to the mailbox! But people keep repeating this advice over and over. Wish it were true but not….

    • #22823
      Jo Ann white
      Participant

      And oh the waiters convinced a birthday cake must have candles…even when they are told no candles.

    • #22843
      Brittany Foster
      Keymaster

      @jo-ann-white I can relate to what you’re saying ! Your post is actually coming at the perfect time. I was given some testing over the last few days and found out that my pulse flow oxygen with the inogen isn’t enough to keep my sats above 90, even on the highest rate. My lungs just aren’t taking it in so it is almost impossible to get the benefit from it. I just had to call my older oxygen company to see if they could drop off the other tanks that I was using since I now need up to 4 liters of continuous with activity. It is hard to switch back but I have heard this before “try the inogen”. Unfortunately, it doesn’t work for everyone and I wish I knew this!

    • #22850
      Jo Ann white
      Participant

      So sorry you need continuous flow because you need to use larger tanks without bonsai regulator then. I am so grateful I can still use d tanks with the bonsai regulator, which last me 3-4 hours at 5-6 liters. At least at home you can hook up to a condenser that plugs in. The ones that go up to 5 liters are quieter and cooler than the ones that go up to 10liters. Unfortunately I now need the larger ones. I can use their oxygen at the gym where I did my pulmonary rehab as long as I register through the rehab nurse. Need to use my own only to get there and back.

    • #22852
      Jo Ann white
      Participant

      Oxygen company was thrilled I did not have a gas stove. Said they had a customer who was severely burned when the flame from the burner melted her oxygen tube and caused a bad fire while she was cooking. Why signs on home concentrators say no smoking too. Why putting cannula on from the back of my head when baking was such a great idea. Wouldn’t it be nice if there was a book for oxygen users that told us these things? Even the supposedly high capacity inogen type machines don’t really produce above 3 liters whatever the numbers. Plus, if you set them on five they are very noisy and last for a very short time. They are good only for people who need only a bit more oxygen and for those people they work very well.

    • #22853
      Jo Ann white
      Participant

      I use my oxygen tank on wheels when I have a party so people don’t trip over the tubing. Especially with a lot of people after a couple of drinks!

    • #22858
      Jo Ann white
      Participant

      The bonsai regulator fits on top of the oxygen tank. You can adjust it to provide anywhere from 1 to 6 liters only when you breathe in through your nose, which means it makes the tank last a lot longer. You also need to remember to breathe in through your nose when talking or eating…or having your teeth cleaned, as my hygienist reminded me! I use it on d tanks which are small and easy for me to lift. I carry them in a case or on a wheeled cart and always take two tanks with me in case I get stuck in a traffic jam or something takes longer than anticipated. I have two regulators so I can switch tanks easily and usually use the one in the case in the car and a supermarket cart and the one on wheels for doctors appointments, eating out, going to the theater (accessible seats) and into big box stores. On 5-6 liters, depending on activity level, one tank lasts me up to 4 hours.

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