Viewing 8 reply threads
  • Author
    Posts
    • #34888
      Colleen Steele
      Keymaster

      Are there topics that you avoid discussing with certain people?

      For example, are your fingers crossed when visiting the doctor, hoping they don’t ask about your weight, eating habits, exercise, mental health, etc.?

      Do you quickly change the subject when a friend or family member asks how you are feeling, inquires about your fatigue, wants to know what you have been up to or why they don’t see or hear from you often?

      The mentally painful part of avoidance is that deep down you probably realize that what you are avoiding is probably something you really should be discussing.

      How do you get over that fear of having difficult conversations? How do you prepare for the reactions, feedback, and questions that might follow? Most importantly, how can you benefit from talking about things that you would rather avoid?

    • #34901
      Jen Cueva
      Keymaster

      Hi @colleensteele, what an excellent question as I bet many of us have at least one topic we avoid in conversations. This can be, as you mention, with our medical team or family and friends.

      I hide from the world when I don’t feel my best. My mom knows this, and f she doesn’t hear from me for a few days, she texts and blows up my phone with calls.

      This is usually how I’m feeling and what I’ve eaten. I love food but at times have a poor to minimal appetite, so I’ve been working on eating more the last year. But for some reason, I rather avoid these questions than starting a debate where I know I’ll lose, LOL.

      Fluid balance is one I struggle with communicating to my medical team. I think primarily because it’s challenging to keep things balanced for my kidneys and PH.

      Pain is another. Although I have pain meds available, I’ll lie there moaning, and Manny will eventually ask if I’ve tried taking any prn pain meds. I usually won’t take them unless I have nothing that I need to do.

      To get over this fear, I often play scenarios in my head before if it’s something I know may be brought up. Does anyone else do this at times? It sounds crazy, I know. Otherwise, I change the subject quickly.

      If we would go ahead and open up about these difficult conversations, it usually helps us mentally and physically, plus we are not alone in dealing with it. It also fosters relationships when we can be more honest and vulnerable.

      • #34970
        Colleen Steele
        Keymaster

        @jenc yes, I make sort through conversations before they come up too! I thought I was the only one who does that. LOL!

        Thank you for sharing what conversations you struggle the most with. I hate the thought of you ever moaning in pain!

      • #34971
        Colleen Steele
        Keymaster

        @jenc yes, I make sort through conversations before they come up too! I thought I was the only one who does that. LOL!

        Thank you for sharing what conversations you struggle the most with. I hate the thought of you ever moaning in pain!

      • #34972
        Colleen Steele
        Keymaster

        @jenc yes, I make sort through conversations before they come up too! I thought I was the only one who does that. LOL!

        Thank you for sharing what conversations you struggle the most with. I hate the thought of you ever moaning in pain!

    • #34916
      Terry
      Participant

      There are two conversations I try and avoid.

      1. BOAT $ with the misses. BOAT means bring out another thousand and for some reason the boss gets a bit hot under the collar when we talk about it.

      2. Leakage due to having had a prostatectomy. Now I don’t leak as I trained my muscles as I was told how to. OK I do leak a little sometimes if I inadvertently pass wind ( rare) or have a coughing fit but hell when asked by the doc. or fellow prostate less men I say nope thats my business and change the subject.

      Oops did I miss what you were looking for. Sorry.

    • #34922
      Jen Cueva
      Keymaster

      Hi @terry, I’m cracking up about you not wanting to have boat conversations with your lovely wife, aka the boss. It reminds me of my hubby, who has hobbies and wants to add things to those, like his motorcycle. He has wanted a jetski. I have always loved jet skis but haven’t been on one since my PH diagnosis. But he knows this one conversation may be easier as I like those, hehe.

      Let me guess; the boss thinks the boat is a money pit? That’s my term for my husband on things I don’t think we need to spend extra money on.

      Hehe, yep, been there with the doctors, I bet that does make you change the topic quickly. Hey, my solution for no coughing, stop passing wind, hehe, although that could be uncomfortable.

      You are fine; these conversations are difficult for you. I’m guessing I know the answer to why you do it on both accounts. If I were you, I would be more worried about conversation #1.

    • #34973
      Colleen Steele
      Keymaster

      @jenc yes, I sort through conversations before they come up too! I thought I was the only one who does that. LOL!

      Thank you for sharing what conversations you struggle the most with. I hate the thought of you ever moaning in pain!

    • #34977
      Colleen Steele
      Keymaster

      @terry I’m with @jenc, Conversation #1 sounds a lot more daunting! LOL!

      It understandable why the 2nd one makes you feel uncomfortable. I know doctor’s need to ask personal questions like that but geez! Cullen has been asked many private questions over the years and usually responds, “Next question”. Some doctors will let it slide but some push for a response.

      • #34992
        Jen Cueva
        Keymaster

        Hehe, @colleensteele, I know, right—poor @terry.

        I like Cullen’s “next question” tactic; I’ll have to see if that works for me. I bet that some of my doctors won’t fall for it.

        Yes, medical PTSD is undoubtedly one where most don’t want to dwell. Unfortunately, there are always various topics when dealing with my PH and other health concerns.

    • #34983
      Brenda Denzler
      Participant

      Is it ever the case that you don’t follow through on what COULD be the start of a conversation because you know the other person won’t understand what you’re trying to convey, so you just won’t go there? You know the conversation will get deep quickly, and that even then the other person probably won’t truly understand what you’re talking about? I get that a lot with medical PTSD. I can imagine it happening with all kinds of issues surrounding PH. Like Jen says, fluid intake, fatigue, breathing issues…..

    • #35004
      Carol Volckmann
      Participant

      Good topic Colleen. My first response reading the question of what we avoid, was to say that I don’t avoid topics – not so. I do avoid answering questions from friends and family “how are you feeling”. I feel crappy, but what is the point? What they want to hear is that I feel better and I don’t!

      Ever since I had my colostomy (that is fine and I have been able to deal with it without difficulty) I now have anal discharge  – doctor never told me this would happen. Now I know that the anus still thinks it has to be lubricated so I have mucus discharge pretty much all the time and gave to wear pads. It is very uncomfortable and embarrassing enough that I avoid this topic all together. Well, …. this forum is the first time I talked about it. I guess that is good.

       

      • #35011
        Brenda Denzler
        Participant

        Carol, this kind of thing irks the fire out of me. In too many cases, patients aren’t given all the information about procedures that doctors recommend. I’m sorry you’re having to deal with this, though your story does give me new respect for the people I know who have colostomies. (I have a cousin who’s had one for decades, already. And a close friend who had one for a time, but it was reversed.)

         

         

        • #35012
          Carol Volckmann
          Participant

          Thank you Brenda for your reply. Yes, it would have been helpful to know all that I would be facing and maybe some suggestions , if any. When I brought it up to the surgeon, I got a blank stare. I deal with it, but it is subject that I avoid.

      • #35014
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, so true; many family and friends want to hear that we feel better. I get it!

        I’m sorry that your surgeon didn’t mention the anal discharge before you had the surgery. Thank you for sharing such personal experiences with us. Too often, patients are left in the dark. Then we, like you, are left dealing with the consequences.

        As @brendad53 says, it opens our eyes to those with colostomies, etc. Working before PH came into my life, I had many patients with colostomies and felt so bad for some of them. They had a difficult time adjusting, and I can’t blame them.

      • #35046
        Colleen Steele
        Keymaster

        @cdvol3gmail-com I am so sorry you are dealing with such an uncomfortable side-effect that your doctor could have at least given you a heads up about! Did you call him out on it? I would at least suggest to him to make a point of mentioning this potential problem with future patients.

        It seems that no matter what you are dealing with you do so with patience and grace. I admire you for that.

        • #35051
          Carol Volckmann
          Participant

          Hi Colleen and Jen, yes I did confront the surgeon. After a blank stare he said it might help to use a fleet. Well, it doesn’t.  Pads do help so it is just one more item on the shopping list! Hehe

          I loved Debbie’s response to the child. We have to find humor wherever we can. 😊

        • #35056
          Jen Cueva
          Keymaster

          Oh, @cdvol3gmail-com, you’re such a lovely and resilient woman who takes what throws your way and makes the best of it. I love your attitude toward life. Your plate is full, and you continue to push through so gracefully, my friend.

          I guess one more thing won’t break the bank as they say, right, Carol! I’m grateful that the pads help and that you feel comfortable enough to open up about this in the forums. That’s vulnerability at its best!

          Cheers to a new week ahead and finding joy and laughter each day.

        • #35073
          Carol Volckmann
          Participant

          Hey Jen, just thinking about you and your move to a new area, making new friends. All that is great except for the part of having to tell your story all over and having to ask, how far is the walk, will you need your wheel chair and ask someone to push it … my heart goes out to you. Sometimes it is all exhausting and raises our anxiety.

          I want to thank you for your very kind open heart encouragement. This is a unique forum where it is safe to let it all hang out. Other forums I have tried are not. Thanks to you, Colleen and Brittany it is a safe, caring, informative and carring place and at times with a sense of humor!! 😊❤

        • #35074
          Brenda Denzler
          Participant

          I second what you said, Carol. Especially hearing that you ask how far you have to walk. It makes me feel not so bad about myself, because I’ve begun doing the same thing. So it’s nice to know, Jen, that this is not abnormal.

        • #35075
          Carol Volckmann
          Participant

          Hi Brenda, no it is not abnormal – you have to ask. We were ask to go out on our new neighbors’ boat and I had to let them know that I could not be out too long in case I needed to use their head (toilet on a boat) because I have an ostomy.

          Sometimes it is not pleasant,  but there are times you just have to be up front.

          I have found 99.9% of the time, people are right there for you and want to help.

        • #35084
          Jen Cueva
          Keymaster

          Thanks, @brendad53, and no kit’s far from abnormal. It’s our reality; the earlier we learn to ask those questions, the more secure we feel, and we can invite others.

          Sometimes I feel like asking a million questions about one outing, but I must be prepared to enjoy it. For instance, Manny usually drives when we go to dinner with friends. He says he has a way to leave if anything comes up with me. That happened Friday evening with some neighbor friends who wanted to ride together. He said he would drive and meet them there.

          As Carol mentions, most of the time, many are willing to help. But I’ve had some who think I have too many questions and comment about focusing on my PH. Yeah, I have to; it’s my life.

        • #35087
          Brenda Denzler
          Participant

          Don’t you just hate that? When people tell you that you’re focusing too much on your illness and only making yourself worse, but all you’re trying to do in reality is take care of yourself so that you DON’T get worse!

        • #35089
          Jen Cueva
          Keymaster

          Yes, I do hate it, @brendad53. What’s worse is that it’s often been family members who say this to me. After too many of these insensitive comments, I started not attending their family functions for a long time. It wasn’t worth my time, energy, and health.

          I have a feeling that you’ve also had some insensitive remarks. I’m sorry, it’s not you; you’re trying to take care of yourself.

        • #35083
          Jen Cueva
          Keymaster

          Thanks so much for your heartfelt words, @cdvol3gmail-com. But I think you, our members, make this forum a lovely space to share. I’m grateful to be a part of it.

          You’re right; those questions and talking about my PH and disabilities to new people often raise my anxiety. Some days, I’ll push myself further than I should because I’m around someone new. I’m learning not to do this as much because I pay for it after it’s done. Or, shall I say Manny is stuck with me after that? Hehe.

          But I’m learning not to be shy about asking and using whatever I need to help make my day and enjoy my outings more. Although, I internalize more than I let out. I know many of you can relate.

          Carol, sharing with your newer friends about your ostomy and the reason for the head-on-the-boat ride must have raised some anxieties for you before you asked. Did you internalize some of that before you popped that question and elaborated? I’m grateful you had the courage to do that because it was your reality. Bless you, my friend.

        • #35095
          Carol Volckmann
          Participant

          Just thinking Jen, all our lives when someone ever needs some help, we immediately offer our assistance and are happy we were able to be there. When the need is on us we feel anxious and somehow feel we like we are imposing. I guess we need to remind ourselves that we do not need to be anxious nor feel like we are imposing – we are just normal!

          You’re right when we push ourselves from our limits we suffer and so does Manny and Dick for sure!

          Hugs and lots of love ❤.

        • #35134
          Jen Cueva
          Keymaster

          Thanks for your comforting words and love, @cdvol3gmail-com. Yes, we are normal, and the anxiety sometimes can get the best of us if we allow it. But I’m doing better for the most part with my anxiety lately.

          We are undoubtedly blessed to have Manny and Dick by our sides. Take care of each other.

    • #35030
      Debbie Moore
      Participant

      We like to go places and see things.  I’m uncomfortable when I telling my husband what I need or what has to change on an outing because of PH.  I feel like it puts a damper on the trip.  It also puts more physical work on my husband.  Otherwise I’ll talk about anything.  I’m a talker.  Talking with children has been the most interesting so I thought I would share a story.  Hope that’s ok.   We went to Asheville for the weekend last month and decided to check out a hip and happening donut place.  The wait was outside.  A father with his two young sons were waiting as well.  Most children are curious why I have a tube in my nose.  So one of the sons asked why.  I pulled out the nasal cannula and showed him how it was short and didn’t go way in my nose.  I told him sometimes I have a hard time breathing and it helped by giving me oxygen to breathe.  He thought about that for a minute and replied “I think I need oxygen cause my boogers get in the way of my breathing sometimes.”  You could see the cringe on the father’s face.  I smiled and said “sometimes my boogers get in the way too.”  (Hope you’re smiling).

      • #35031
        Brenda Denzler
        Participant

        Too funny! Do we have a place here to collect funny stories about PH? This should be there, for sure. LOL!

      • #35040
        Jen Cueva
        Keymaster

        Hehe, @debbie, kids tend to say the darndest things, right? I also enjoy talking to kids as they are always so curious. But like in this instance, you never know what they’ll say.

        Yeah, that would make the PHuns of PH book, if we had one, @brendad53.

        Debbie, I do this with friends and family like you don’t like to bring up these things to your husband about adapting. Most often, it’s been with newer friends. It’s like I hate to ask how much walking is required to go somewhere. I need to know these things to take my wheelchair if required. Then, the next uncomfortable mention is who will push my wheelchair.

        In your instance with your husband, I don’t think it puts a damper on the plans. It helps you be prepared to enjoy the outing better, and that’s what’s most important. It’s more uncomfortable for us than for others around us.

      • #35047
        Colleen Steele
        Keymaster

        @debbie anything you want to share here is ok, especially something as adorable as this! If only that embarrassed dad knew how much that innocent conversation probably made your day! I know hearing about it has made mine!


        @brendad53
        I think you are right! We need a spot to share funny PH stories. I’ll save it for a topic post next week. Thanks for the suggestion!

        • #35057
          Jen Cueva
          Keymaster

          Excellent suggestion, ladies, @debbie, @colleensteele, and @brendad53! I love the idea of a place for sharing the funnies or PHunnies of PH life.

          Cheers and hugs to a great new week. Don’t forget to laugh.

Viewing 8 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account

Verify you are not a robot