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    • #11952
      Brittany Foster
      Keymaster

      This past weekend was a long weekend for those in the USA celebrating Memorial Day. I took an amazing vacation to Canada and had such a great time! It came with its own set of challenges because of PH and other medical conditions but I was able to work through them.

      When I stopped and paused during the day, there were times when I would become frustrated with myself. I was frustrated at the fact that I felt more tired than everyone else. I was mad that walking up stairs left me more winded than it has in awhile, and I was upset that I was ashamed of having to wear oxygen.

      When I actually started to put things into perspective and think about my anger and frustration that was beginning to cause me anxiety, I realized the root of this evil mind game was comparison. I was comparing myself to friends that I went with that didn’t have these medical conditions. I was comparing myself to others around me even though I didn’t know anything about them. I was mad with myself when I thought “you were able to do this last week, why can’t you keep up now?” Comparing myself to others and to myself was what was putting a damper on parts of my day.

      Being able to recognize these thoughts and the reason for them was so important and really make me reevaluate my thinking. I focused on the positives of what I was able to accomplish instead of focusing on how much effort it took to get there. I started to remind myself to stay present and stay in the moment and fully enjoy each experience of my vacation.

      Comparison kills happiness if you let it. Have you found yourself comparing yourself to others and to yourself? What are some things you say to yourself to stop this kind of negative thinking? Are you able to recognize when you are comparing?

    • #11964
      VK
      Participant

      Hi Brittany,
      I agree totally. It’s like an internal monster. You are doing the right thing by focusing on what you can achieve and what gets you there.

      Keep up the good work in avoiding comparing yourself to others who are lucky enough to not have problems like PHTN. I need to learn how to do that too – I have real problems with a type A personality and not comparing myself to childhood friends. I often can’t recognize when I’m comparing, because of how natural it is for a human to expect oneself to perform to the standards that others have.

      • #11977
        Brittany Foster
        Keymaster

        VK,
        thank you for taking the time to read this. It totally is an internal struggle. There are so many people whether they have medical conditions or not that compare themselves. With the world of social media, I feel like it is even more nowadays. On my hard days I try to stay away from social media that show pictures of people enjoying things outside when I am stuck inside. I know it is a trigger for me when I am feeling down and it is hard to get ahold of the downward thoughts that can easily spiral.

    • #11996
      Ann Goddeyne
      Participant

      One quote I heard that always helps me is that I am comparing my insides to other peoples outsides. Everyone has their own problems. Mostpeoples problems are hidden unlike ours with our oxygen , tiredness, and shortness of breath. I know I can cope with the problems I have. I try to be grateful for what I can do rather than upset over what I can’t. At least on goood days I try for this.

      • #11997
        Brittany Foster
        Keymaster

        Thank you for that quote Ann. That is very powerful. I always like the quote “Everyone is fighting a battle you know nothing about.” I personally know all too well that when I am feeling the most depressed on the inside, I mask it with smiles and a bubbly attitude on the outside. So whether it is physical illness or mental illness nobody ever knows what others are going through.

        I too try to focus on the things I CAN do to help myself from getting caught up in what I can’t. It feels difficult when I’m actually the only one in a group of friends who can’t complete something but with friends who understand, they will be able to redirect me!

        Thank you for your words of wisdom! I truly appreciate it.

    • #12008
      ronald cole
      Participant

      Dear Brittney,
      Hello Girl, This is Ron Cole in Dallas, Texas. last Thursday I had 13 straight hours of Testing and volunteered for a brand New non-FDA Lung Test where they put special Gasses in your Lungs and then they have a brand new Xray machine that triples their ability to check your lungs, that’s just a quick note. Honey, I have been through personal Hell all my life with unrelated illnesses and a totally Dysfunctional Family from Birth on.
      When I go to bed alone, as I live alone and am single, I have many fears, terrible lonely fears where the only outlet for that fear when I am going to sleep is just to talk to God, my higher power, for he is the end run for me. I get the message back from him that says, Ron, you’re just fine at the moment, when I am ready for you I will let you know until then just go to sleep and we will talk in the morning. I feel so bad for you when I read your posts, on occasion, I see you are concerned about image issues and more. Just forget that. This PH is very tough, and at your age, I would have dreaded it, I understand you and I get you! Perhaps just one seed of wisdom. many young people like you just up a die from so many things we both can name. You’re doing so much good for all of us and just think my Dear, your going straight, non stop to heaven when God decides for us. Why for sure? because you have time to get your soul in order, something many others could not have time to do. Rely on your spiritual condition because he is the only person who will never ever let you down and is available to you 24/7 365. You need no appointment. He saved my life so many times. last Mothers day I celebrated 47 years in AA, I cannot even imagine that, so he does perform Miracles. I wanted to say the HUGH PA Clinic at UT Texas University in Dallas, the Doctors told me that between Australia and Certain studies in the USA they are really close to being able to hold this PH back and now have positive reversals in Pressure, so there you go. God Bless you Beautiful.
      I am in your corner.

      Ronald Cole
      USMC Ret.

    • #12017
      Brittany Foster
      Keymaster

      Ronald,
      Thank you so much for saying all of that and for sharing that with me. I love that you are strong in your faith and that turning to a higher power brings you peace of mind and comfort when you are struggling to find that within yourself. I find that in my moments of weakness I do the same and turn for something greater than myself (no matter what everyone’s own personal beliefs are). Thank you for your understanding and for your kindness. You’re brave to share all your struggles and triumphs and I truly appreciate that more than you know:)

    • #12240
      Beverly Repouille
      Participant

      Excellent article once again! Thank you for helping ME to put things in perspective. Your posts help me more than you will ever know.

      I have been big into the “pity me” stage lately. I go out so seldom – mostly doctors’ appointments. Yesterday I kind of hit the wall, so to speak. I woke up short of breath and with sharp pain when I tried to take a deep breath. I finally decided to go to the ER to make sure it wasn’t another blood clot. Long story short, it wasn’t and all my labs and testings came back just fine. I always feel guilty when I go to the ER (comparing myself to the others) and they don’t find anything wrong – like I’m taking their time from someone who really needs them (and I don’t???). When I voice that to them they always say that it is better to come in with PH and NOT have anything wrong than to not come in and have something VERY wrong. I went home and just kind of stewed over the whole thing the rest of the day.

      This morning after a good night’s sleep, it’s a brand new day and I’ll not waste it comparing or feeling sorry for myself. I have blessings that others don’t have. Many of my friends have lost spouses. I am lucky enough to still have mine with me. For THAT, I am extremely grateful!

      Here’s hoping that Ronald is right and they can at least arrest the PH progression for us! HUGS!

      • #12243
        Brittany Foster
        Keymaster

        Beverly,
        I can understand the comparison when in the ER. I too feel guilty when I find out that it is not as bad as I thought it was. We must know that when our bodies alert us that something is “off” we should listen. I’m sure if you called your doctor and explained your symptoms they would want you checked out to be safe too. There will always be people in this world that have it better and there are people that have it worse. Even though this is true it doesn’t make our struggle any less real or valid. It’s hard to recognize that truth but it’s so helpful. I am glad you have good support and consider me one of those who will always support you too! 🙂 We got this!

    • #12245
      ronald cole
      Participant

      Personally, I do not care what anyone thinks about my requests or comments about this horrible Illness PH. The Other day, I had a Nurse at my Dr’s off trying to push something on me that clearly was here responsibility regarding me obtaining oxygen. I told her to do her damn job, and if she does not want to do it, I will inform the Corporate Head of the entire organization that she is skirting her responsibilities, causing stress and possible harm to the Patients.
      Today I talked to her again, she called me and was a friggin Mouse. How the hell do they know how we feel. today I got up and hardly made it to the bathroom. The same thing goes for the ER. I have not been there, there are many things that take place there. Be your own advocate, just tell them, Hey I have PH and I am sick and I do not care about your tests, I care about the fact that I was sick and you the last bastion of hope I had today. If you’re disturbed about that, please give me the supervisor, Now! Like many have said, just because they cannot see is arm twisted in many directions, or our asses hanging out of our pants, does not mean we don’t feel deathly Ill.

      • #12248
        Brittany Foster
        Keymaster

        Ronald,
        you are so right that we need to be our own advocate. In therapy she encourages me to speak up about knowing my rights as a patient. If I don’t want all the med students in the room I don’t need them in the room. I don’t need to go over my conditions a million times when they should be reading up on my file and consulting a doctor before even coming into my room to treat me. It’s so important to know what our rights are as a patient and to be treated the way we should be especially in a medical situation. I’m glad that you were able to tell the medical professional like it was and get better care. Nobody knows by looking at us what we are struggling with. I like your spirit. Thanks for the responses.

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