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    • #26705
      Roxanne Giustini
      Participant

      I was diagnosed with Idiopathic PAH in January of 2016 and was doing great! Going to the gym 5 days a week, eating right and really no bad episodes or symptoms. My pulmonologist would call me his star patient and I know it may sound silly, but sometimes I almost forgot I had PAH. Last December I was really sick with a flu-like illness and never quite got back to 100%. Yesterday I started titration on Selexipag. I fought getting on new medication/therapy. I felt like I was a failure. Like I didn’t work hard enough or want it enough to get back to my previous “normal” I know this disease will progressively get worse and that a lot is beyond my control, but I always feel like I should be doing more. Does anyone else ever experience feelings of failure?

    • #26711
      Colleen Steele
      Keymaster

      @rgiustin I am so sorry! This must be a common feeling that PHer’s feel when symptoms worsen because my son’s doctor addressed it when telling him he needed a transplant. He opened the discussion with, “You did nothing wrong and everything right. You have fought hard and needing a transplant isn’t any sort of failure on your part, it’s the disease.”

      I understand how disappointed you are about needing more aggressive treatment but hopefully it will help you and your quality of life will improve again. Please keep us up to date on how you are doing. We are here for you.

    • #26713
      Roxanne Giustini
      Participant

      Thank you so much for the response. Sometimes it is hard to talk to family about these feelings. I think it is difficult for people to relate if they have not been in a similar situation. It’s great to have this outlet and to be a part of this community! It makes me feel more like my truly “abnormal” life is more “normal” (whatever that is!)

    • #26723
      Jen Cueva
      Moderator

      Hi @rgiustin, I am sorry to hear that you are feeling like a failure. That is far from the truth. But, I, too, have been there. Anytime I have needed a new medication or even a hospitalization, my mind starts thinking like this. It is nothing that you have done, and my PH team reminds me of this often. But, I think, as you mention, it feels like you have lost control over your life. When in reality, learning about the treatments and finding the right treatment and dosage often offers some relief.

      I have been living with PH since 2005. I am also on Uptrav(selexipag). Please let me know if you have any questions while titrating. I am hopeful that this will help you get back to enjoying some of what you have been enjoying. Feel free to share your feelings anytime; that is what we are here for, supporting one another.

    • #26757
      Dawn
      Participant

      Hi @rgiustin. I’ve felt like this many times in my life! I think part of it is that we human beings have a hard time accepting there are things we can’t control or have no way to ‘fix’. I think feeling like a failure makes us think that if we just try hard enough/long enough we can have the control that we wish we could have. I had ‘something’ in January of this year, the doctors weren’t sure what it was, that severely affected my breathing and in all honesty scared me a lot. I missed work, tried to go back, lasted about an hour, was off a couple more days after that. I was absolutely exhausted, and felt like it was a pre-view of what could happen as my ph progresses. I try to stay in the present as much as I can, aside from making necessary arrangements for the ‘what ifs’ that may come in the future.
      PH and the changes that come with it are not the fault or failure of anyone who has it. Same as with any other medical issue. When I have difficulty believing that for myself, I use the ‘trick’ of thinking how I would advise someone I loved that had ph or another serious disease. I would want them to do their best to fight, but couldn’t ask more of them than that. If I believe that for those I love, which I do, I can’t ask more than that of myself either.
      Like you, I don’t fully disclose my feelings/worries with my family because it’s hard to explain how a disease like this effects you at times. And, I don’t want them to worry about me more than they already do. These forums have been such a god send for me, because I can put out exactly what I’m feeling and/or dealing with and not worry about judgement.

    • #26766
      Jen Cueva
      Moderator

      Hi @dawnt, you do a fantastic job of offering support to others. I hope that you also benefit from the forums as much as you help others.

      You are correct; we want to fix and be in control of everything! I struggle with that all of the time. It often adds to my other stress and anxiety.

      I love that you mention that you try to stay in the present, as much as you can. I, too, struggle with that and work hard to keep that mindset. Do you find it tougher for you on days when you are feeling your worst?

      I think for me, writing my column offers a ton of information to my friends and family that I would not otherwise mention. I have always kept my problems in as I was so bust helping others. I am still working on this in my therapy. Do you talk to anyone besides your therapist, Dawn? Fur babies count, too, hehe.

    • #26790
      Dawn
      Participant

      @jenc, I absolutely find it tougher to stay in a good mind set both on days when I’m not feeling my best and when things start to ‘slip’ with my depression. My therapist and I actually came up with a ‘rating’ scale, based on how my depression tends to flare up, and if I hit too high a rating number I know I need to ‘fess up and be totally honest about how I’m feeling before it gets too much a hold on me. It’s been working really, really well. Therapists have all kinds of rating scales, etc., but this seems different. The rating scale is in my words, based on how my depression usually affects me physically/mentally, and it seems easier to use my own scale to say ‘I’m still ok, I can get through this’, or ‘I know where this is leading, I better reach out and say something to my therapist’. I do talk with other people besides my therapist. Talk to my boys (my dogs) all the time, they and the horses are great listeners! I also talk to certain friends/co-workers, and family, but it depends who I’m talking with just how much I share. And, of course, I talk here on the forums.

    • #26793
      Roxanne Giustini
      Participant

      @dawnt and @jenc Thank you both so much for your insight and input. @dawnt that is a great way to look at it. To step outside yourself and think/act as if you are advising a loved one. After all we definitely should include ourselves in that category! I guess we are our own worst critics a lot of the time! I need to rethink that and try to be my own cheering section instead! Celebrate the little accomplishments and don’t stress over things I can’t change!

    • #26796
      Jen Cueva
      Moderator

      @dawnt, yes, I tend to struggle more when I am feeling my worst. I like that you shared your rating scale. My therapist, just last week, told me to start doing a similar scale with my anxiety. I know when I need to step back and do something that will help me relax and decrease my anxiety before it gets worse. It is a bit like pain control, we must nip it in the bud, so they say before it gets too bad.

      Has your rating scale been helpful?

      I am grateful that you are talking to friends and family, like you, I do not share all with them either. I probably share much more here in the forums. I know that y’all can relate, and this is a judgment-free zone. I love that you mention your “sons” and the horses. They probably are all great listeners. My Sasha tends to talk back at times, though, hehe.

    • #26797
      Jen Cueva
      Moderator

      Hi @rgiustin, you are welcome. Just know, it took us time to do these things, too. Still, I tend to be better at offering advice than listening to it myself. Aren’t we all?

      This is why I find the PH forums helpful because we can help each other through these days when they need this gentle reminder to be patient with yourself, too.

      I love you, “celebrate the little accomplishments.” We have a Weekly-Win subforum that is intended to remind us all to celebrate those little weekly wins. I will attach the link to that here. Feel free to share your accomplishments, big or small, each week.

      Weekly Wins

    • #27428
      Jen Cueva
      Moderator

      Hi @rgiustin, how are you coping now? Are you feeling any better as far as accepting the changes and being patient with yourself?


      @dawnt
      , how about you? How are things going mentally for you right now? What has helped you the most during the pandemic? You always are such a huge support here in the forums.

    • #27429
      Roxanne Giustini
      Participant

      @jenc Thank you so much for checking up on me! I AM doing better on that front. I realize that even though I might feel that I’m not at my optimum potential right now, there a lot of people struggling more than I am. I’ve been trying to take it easier on myself from an expectation standpoint and realize that everyday is a victory! The titration on the Uptravi it’s going great so far. This Wednesday I should go up to the highest dose. Already feeling an improvement with shortness of breath when climbing stairs. So that’s definitely a win for me!

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