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  • Coming to terms with your diagnosis

    Posted by dawnt on June 25, 2020 at 9:35 pm

    Having been diagnosed with ph 2 years ago, along with limited scleroderma, afib, hashimoto’s during the search for a diagnosis, I find I’m going through phases of ‘acceptance’. While I recognize the seriousness of my health issues, I try to live my life as ‘normally’ as I can. I try to look at it that none of us truly know what the future holds, so the only difference with these illnesses is that I ‘might’ have an idea of what may eventually lead to my death. I don’t want to give these illnesses more power over my mental health and happiness than I have to.
    Having dealt with major depression for many years, I work very hard to keep myself in a good place and not let my thoughts/fears get too overwhelming. Overall, I think I’m doing a fantastic job! I go through periods though where the ‘what-ifs’ and changes in my life already from these illnesses weigh on me. I think when dealing with a serious illness(es) this is likely a very ‘normal’ cycle to go through. Having not been in this position before, though, I’m not sure.
    Any thoughts? Do any of you find yourselves in this same type of thinking patterns? Thanks for any input.

    dawnt replied 3 years, 9 months ago 4 Members · 11 Replies
  • 11 Replies
  • Colleen

    Member
    June 26, 2020 at 1:45 pm

    @dawnt thank you for posting this important topic. I think many of us will agree that it’s very hard not to think about the ‘what-ifs’. To a certain degree we almost have to. It sounds like you are maintaining a good balance of living in the moment and mentally preparing for future possibilities. If that is the case than you ARE doing a fantastic job!

  • jen-cueva

    Member
    June 28, 2020 at 1:45 pm

    This is such an important topic, @dawnt. I still find that I fight the accepting part of my PH and other coexisting illnesses. It sounds like you are doing an amazing job with all that you are dealing with!

    The “what-ifs” often pop into my mind even when I am least expecting it. I find that trying to feel the emotions that come with this but move on after acknowledging it helps. I find that if I stay in this mindset long, then it is easy for depression and anxiety to set in. Does this make sense to you?

    We need to process emotions as they pop up, but try not to “wallow” too much if that helps. Mental health is important to maintain as we deal with many chronic illnesses.

  • dawnt

    Member
    June 28, 2020 at 8:03 pm

    Thanks @colleensteele. I think so far I’m keeping a good balance. The ‘what ifs’ that scare me most are the ones that deal with the actual dying process if either the ph or scleroderma are the actual cause of death. (knowing that they will surely contribute in some way) I find that I’m not actually afraid of dying, I have many loved ones that have passed and that I long to see and be with again. The actual process is what scares me if it is a drawn out process. I’ve had an advance directive for many years already, and a will, and my sister has said that she’ll take care of me if I couldn’t live on my own at any point. I’ve got a friend who will see that my two boys (my dogs) get a good home if I pass before they do. My therapist has assured me that she’s known people who died of lung disease and they were kept very comfortable at the end of their dying process. Although I’m hopeful I’ll be here for many years yet, shortly after my diagnosis I asked a very close friend if it’s at all possible that they be with me in my final moments along with my family. They said they would absolutely do that for me, which gives me a great deal of comfort. I feel like I’ve taken care of the important things, so want to focus on sticking around as long as I can. My apologies if this is a bit too direct in speaking of death and fear of the process.

  • dawnt

    Member
    June 28, 2020 at 8:25 pm

    Hi @jenc. It absolutely makes sense that it’s easy to slip into depression/anxiety if we focus on the ‘what-ifs’ for too long. Acknowledge the emotions, process them, keep moving forward. With my depression, although it’s been well controlled for quite awhile, wallowing too long on any negative feelings/emotions, let alone beating myself up for how I feel I don’t deal as well as I could at times, is a sure way to get into trouble with the depression. I’m so much better at stopping the slips before they get too bad, but it’s something I have to be diligent about. As I’m writing this, it just struck me that there is no fault/no beating myself up in this process. I’ve never been in this type of situation, so I am and will deal the best I can at any given moment in this journey. That I can do!

  • jen-cueva

    Member
    June 29, 2020 at 9:33 am

    Hi @dawnt, I am grateful that you can share your fears and talk about death here. Although this is often a topic that may too much, it is an essential conversation that those living with PH and other diseases must-have. Caregivers know this, too well, I am sure. When talking about death and dying, I understand that some are not there yet, that is OK, too. Everyone must approach these topics when they feel like they can. I also have an Advance Directive and have had for several years as a request from my medical team.

    As far as your depression, it sounds like you have worked through so much and are doing a great job. You seem to have learned how to notice when you are slipping into that mindset and can easily lift yourself out. That in itself is a struggle, and I am sure that you will fight this daily. How long have you been fighting depression? What besides the following statement has been your best tips to stay out of depression while battling PH and all everything else?

    As I read this, I smile and can feel this in so many ways, well done. Thanks for sharing. “It just struck me that there is no fault/no beating myself up in this process. I’ve never been in this type of situation, so I am and will deal the best I can at any given moment in this journey. That I can do!”

  • dawnt

    Member
    June 29, 2020 at 5:20 pm

    Well, @jenc, I don’t always ‘easily’ lift myself out of a slip – that would be far too easy! But I do know the signs that things are ‘slipping’ (as I call it). As I said with dealing with my current health issues, no fault & no beating myself up, but part of me has always felt some shame when it comes to depression. I know it’s a medical condition, and I’ve made tremendous progress, but it’s taken me a long time. I first developed depression in my mid/late teens. I didn’t get long term therapy, enough to make a lasting difference along with medication, until my mid thirties/early fourties. My family wasn’t exactly supportive about speaking with an ‘outsider’ and telling family ‘secrets’.

    I have been extremely blessed to have a therapist that stuck it out with me until I was able to trust her and start to open up. That would be one of my best tips to anyone in therapy, you have to find the right therapist for you. I don’t really feel qualified to give such tips, but another thing for me is to stay in the now. If I can’t control an outcome, such as with an illness, do what I can and let it go. Learn to reach out to those you can trust, and ask for support when you need it. That, to me, is a big reason I finally joined this site after reading only so long. Who else can really understand what happens in dealing with these illnesses except those we share it with, can be honest with, and who know because they are dealing as well.

  • Colleen

    Member
    June 29, 2020 at 5:59 pm

    @dawnt there is no such thing as being too direct here on the forums. This is meant to be a safe place where you can be direct and discuss even the most sensitive of topics. The reality is, PH has had us all thinking and preparing for the big ‘what if’s’ at some point or other. Preparing for the worst case scenario is hard and I commend you for the preparations that you have made.

    I just read your recent update and I am so happy that you found our forums and decided to join. It’s a pleasure having you with us. You have already shared so much that other’s can learn from and relate to. Thank you!

  • jen-cueva

    Member
    June 30, 2020 at 11:41 am

    Hi @dawnt, yes, like Colleen says, never think you are too direct here. This is a group of PH patients and caregivers who know these struggles. Often, others may not talk about things these topics until someone like you brings them up. This is what support is all about.

    I am sorry to hear that your family did not fully understand and support you as you dealt with depression. This is a tough one and although it is talked about more today, it is not enough. Some still find mental health a taboo subject, sadly. I am grateful to know that you continued to work with your therapist and can now see how this affects your overall health.

    I am so happy that you did come here and now your posts will help many others. It sounds like overall, you have maintained a balance that works for you. Just last year, I started seeing my therapist and I have thought of changing as I am not always open as I would want to be. Maybe that takes even more time, what do you think?

  • jen-cueva

    Member
    June 30, 2020 at 11:41 am

    Hi @dawnt, yes, like Colleen says, never think you are too direct here. This is a group of PH patients and caregivers who know these struggles. Often, others may not talk about things these topics until someone like you brings them up. This is what support is all about.

    I am sorry to hear that your family did not fully understand and support you as you dealt with depression. This is a tough one, and although it is talked about more today, it is not enough. Some still find mental health a taboo subject, sadly. I am grateful to know that you continued to work with your therapist, and can now see how this affects your overall health.

    I am so happy that you did come here, and now your posts will help many others. It sounds like overall, you have maintained a balance that works for you. Just last year, I started seeing my therapist, and I have thought of changing as I am not always open as I would want to be. Maybe that takes even more time, what do you think? Would you look for another one or wait a bit?

  • joyce-sandberg

    Member
    June 30, 2020 at 4:58 pm

    I think you have achieved the perfect balance. I personally do not entertain the what ifs. What is … is. My focus is trying to keep things as normal as possible and not get bogged down by anything that I cannot change.
    My meds, keeping busy with 2 rental houses (Air BNB, Flip Key, Trip Advisor, Craigslist and my own realtor frees my mind from my CTEPH. My husband is my extension in helping me untangle my oxygen tubing more often than not. As I peruse through my house on my Jazzy Electric Chair it is inevitable that my 50′ tubing gets hung up almost daily.
    I recently found that the cane attachment on the back of my chair can act as a deterant by threading my tubing thru the holder it keeps it away from the wheels.
    These are my highlights of my day. Finding new avenues to direct my limited energies.
    I am fortunate to see my glass half full and have never suffered depression. My sypathy goes to those who deal with it.

  • dawnt

    Member
    July 1, 2020 at 12:23 am

    Thanks Joyce! I feel like I’ve found a good middle ground between avoiding getting to wrapped up in the ‘what ifs’ and just living my life. It is what it is, and I’ve always had what many call a weird sense of humor so I can usually find something to laugh at in just about any situation. It might sound morbid at times, but…it is what it is.

    Jenc, There are so many things to consider with your question about thinking of changing therapists. I am not someone trained to give the best answer to that. From articles I’ve read, and my own experience, a couple points I’d make are to consider how often you see your therapist – if you feel it’s been long enough/often enough that you think it’s not going to get easier for you to trust them then that’s something to pay attention to. If it’s that the issues you’re dealing with, and how you feel about them, are keeping you cautious about totally opening up more than it being about the therapist that’s a different issue. Although it might be difficult for you, I suggest bringing it up with your therapist. They shouldn’t take it personally, or be hurt by any doubts you have, those feelings aren’t part of a therapeutic relationship. See what they think, how they feel about how things are going in therapy, and if they feel you’re ‘on track’ as far as comfort level etc. If you decide it’s not quite the right ‘fit’, do what you need to do for you. I hope that helps at least a bit.

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