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    • #34123
      Jen Cueva

      As we end Stress Awareness Month, check out this piece by fellow PH columnist Mike Naples.

      Mike compares a scene in the Disney classic Aladdin with stress. The scene is where the snake squeezes Aladdin within an inch of his life. You can read it here.

      He continues to discuss how PH has multiplied his stress triggers. Do you feel PH multiplies your stress triggers?

    • #34124
      Colleen Steele

      I tune into any topic about stress because it’s always been such a battle for me. Mike’s column is excellent! With or without PH I think many can relate to what he shares.

      stress definitely had an effect on Cullen’s PH. The worst he physically felt the more stressed he would get which would then increase all of his symptoms. Then there would be the fatigue hangover from battle both his physical and mental health.

      As is caregiver I carried a lot of PH stress too…and still do. There are certain sounds and situations that can trigger an old memory and instantly I will start to feel stressed. I’ve learned to talk myself threw it, unclench my hands, take some slow deep breaths and remind myself that I don’t have to be stressed about these things anymore.

      Can any other caregivers relate?

    • #34131
      Jen Cueva

      Hi @colleensteele, I agree that with or without PH, all can relate to stress to some degree. Some of us tend to stress and worry more than others. I’m guilty of this and try to find ways that help me destress, like unplugging as I did on Sunday for part of the day.

      As a caregiver, I understand why certain sounds and words may trigger stress. It’s stress-related to PTSD on many occasions, I bet.

      Like Cullen, I’ve noticed that my stress triggers are elevated when I’m at my worst; I wrote an earlier column about how stress exacerbates my PH symptoms. This is a discussion I’ve had on multiple occasions with my PH team and therapist.

      As Mike shares, often managing our daily care adds stress, too. Transitioning to new care teams, I relate and the stress related to refilling his medications.

      Colleen, learning ways to reduce your stress as you experience them can be helpful. Your examples of talking yourself through the situation and unclenching your hands are excellent tips. Thanks much for sharing.

    • #34189

      I also found the article Very relatable and stress can affect our bodies, care givers and the sick alike. Recently losing our daughter and having the reality of my husbands illness progressing spiked my blood pressure all the way up to 179/100. When I get triggered it is all too easy to spiral and now I can feel my heart rate climbing, besides adjusting my diet and exorcise I called my doctor and got BP medication. As a care giver I cannot afford a heart attack or stroke.

      I liked Mike comparing it to Aladdin’s snake scene as I have felt the panic squeezer myself even without PH! My husband and I were able to divert our attention away from the sadness and overwhelming thoughts of doom by planning a trip that we have been putting off and really letting it all go for a week. Sometimes I think it is necessary to just escape and give yourself something to look forward to. Perhaps an expensive vacation isn’t an option so sometimes I can escape in a book, in a garden, up a mountain, whatever escaping looks like for you.

      After that escape I feel reset, rebooted and I am even able to visit the grave without that same panic, I allow myself to grieve but no longer let myself get washed away in thoughts of my husband following right behind her; Just like Colleen I take a very deep breath, sometimes it helps me to count 5 seconds as I breath in, and then I count another 5 seconds while I breath out, this kind of forces me to focus on the breath its self. After a few deep breaths I always roll my shoulders back and down because stress and the cold make my shoulders go right up to my earlobes… and as my father always said “your shoulders shouldn’t be worn as earrings!” hahaha

      I just want to say how much you have all helped me as well, it is nice to know we are not alone and it has really helped me understand some of what my husband is going through, how to better help him and most importantly helped me re gain some of my hope back! I just keep reminding myself that each person is different and just because our daughter lost her battle with PAH it doesn’t automatically mean my husband wont be here for much longer.

      • #34222
        Colleen Steele

        @kygon considering all that you have been through I find comfort in hearing how you struggle with and conquer your stress. I think stress and grief have much in common. You never completely get over either and some days are worse than others but it is possible to find healthy ways to deal with them so that you can function and participate in life.

        I very recently discovered a new way to deal with stress. When something serious is weighing on my mind I often feel like that is the only thing I have the energy to focus on. Now I try to tackle other things at the same time. Small tasks like mow the lawn, run errands, or clean something. It helps to clear my head and it makes me feel better at the end of the day knowing I accomplished something other than worry. Make sense?

    • #34221
      Jen Cueva

      Wow, @kygon, I’m all teary-eyed after reading your response. But it’s both happy and sad tears. I’m saddened that you lost your daughter to PH but happy because I can feel the piece as I read your post.

      Although your husband, Bryan, was also diagnosed with PH, your mindset is powerful! I love that you both had that trip planned and went and enjoyed it. You both certainly needed a rest of sort.

      I can only imagine how stressful you are at times as a grieving mom and caregiver to Bryan. Please don’t forget about self-care. Too often, caregivers are guilty of this; I have been, too, as a caregiver. Please keep your BP in check and find things as you say to help you destress. I love that quote from your father- thanks for sharing, excellent reminder!

      But your strength and resilience shine through this post and others in many ways.

      We are fortunate to have you and grateful that you’ve felt the support from the forums.

    • #34226

      @jenc and @colleensteele As always thank you for your continuing support and friendship! Yes grief and stress do go hand in hand and often feel much the same … I have had a lot of loss in my life but nothing really hits you like losing a child, I have lost both of my parents and a sister but this was very different. (Not a pitty party, just saying I have handled loss before just not in the same way, the younger the life the harder the loss I guess)

      Colleen, I definitely understand the “stay busy” part of stress management! When overwhelmed sometimes I make make myself a little to do list, it just starts with “Breathe” and we go from there. Oddly the tasks I hate the most are the most distracting/rewarding like cleaning the bathroom or folding laundry or even eating something healthy while my family is munching away on the chips- (that one Really makes me feel like I accomplished something hahaha).

      Jen, yes I do try to set aside some “me time” every week…  I am reading a book about changing habits for better health and one of the goals is to spend at least 100 minutes on stress relief/self care, at first it sounded IMPOSSIBLE and I felt a little guilty, but because it was a Goal it was easier to do without the guilt hahaha. Last week I went and got pink sparkly nails and got together with some friends. This week I made hummingbird food and put out my first feeders for the season. I find watching them is stress relieving and it gives me something to look forward to in the evenings.

      I hope everyone sets goals for self care/stress relief each week!

      • #34228
        Jen Cueva

        Hi @kygon, you undoubtedly have had much loss in your life. I’m sorry. But I can imagine each new loss affected you in different ways. But you indeed show your resilience through it all.

        What’s the book title you’re reading on self-care if you don’t mind sharing? I love that you have various ways to promote self-care and destress. I also love watching hummingbirds. I did this on many mornings while visiting my mom in March. I also enjoy time out with my friends and nail and hair time. Although, I do often think of many things I should be doing whole at the hair salon. I don’t do this as much at the nail salon. But I do space these out. I also enjoy going to the grocery store, or most days- I know, strange as it sounds, hehe.

        Being outdoors and being by the water is also one of my favorites, my times, or anytime.

        Kudos to you, and thanks for sharing your experiences and ways you promote self-care.

        • #34233

          Jen, the book is actually about weight management and changing habits for a healthier lifestyle, I don’t have a ton of weight to lose but I was looking for natural options before seeking medical help for my BP. I just really found that 100 minutes a week for stress relief and self care to be very relevant to this topic but it’s called Target 100 by Liz Josefberge.

          I was surprised to find that self care and stress relief are such import factors to managing weight, especially for people over 40. The book helped me be more self aware as well as snack aware, LOL, and although I still ended up seeking medical help for my BP, I lost 5 lbs (whoo hoo). I really like how she doesn’t really focus on diet, just goal setting and habit changing and emphasizes on changing your mindset so your not punishing yourself or using negative self talk when you don’t adhere to some crazy expectation. I found that to be worth reading the book all by itself.

        • #34235
          Jen Cueva

          Excellent share, @kygon! Like you, I don’t need to lose weight, but being in a better mindset, setting goals, and being snack aware is something most of us could benefit from. Although snack familiar is probably the most I need, the least I want to hear, hehe.

          Many self-help books, for one thing, do branch into other aspects of our lives.

          WTG on the 5 pounds; now, you’ll have to share some of your favorite snack-aware snacks and healthy eating changes in our diet and nutrition section when you have a few minutes. Didn’t you recently embark on this new book and try to make better eating choices?

          Overall, it sounds like you are crushing it with self-care! Keep it up!

        • #34234

          Oh and going to the grocery store or any store can be very enjoyable! Next time your at the hair or nail place instead of thinking about all the things you Should be doing or need to do when you get home .. Try to think of how pretty your going to look, or how much you deserve this time to relax, check out the nice painting on the wall or the flowers on the tables .. I mean we are all human and those to do lists sneak back up on us, but if we can just focus on enjoying what we are doing, really be in the moment for just 15 min a day… well in 7 days you get your 100 min! Ta Da

        • #34236
          Jen Cueva

          Excellent reminders, @kygon, and I appreciate your suggestions. I have a hair appointment this evening and will work on those. Of course, my stylist also talks to me and vice versa most of the time. But it’s usually about our kids or life in general, not to-do lists.

          Yes, retail therapy, right? I never considered grocery shopping retail therapy, but it can be more stressful unless you notice the high prices of everything. But, I enjoy cooking, eating, and flooding. Plus, I think being around and talking to pretty much everyone offers a boost. It;’s always been one of my enjoyable adventures.

          Thanks, much; your tips are helpful.

        • #34243
          Colleen Steele

          @kygon ok I have to stop you at “grocery store”. LOL! I HATE grocery shopping. I swear every pet peeve I have can be experienced there. Thank God I don’t go as often as I used to because we have our groceries delivered most of the time now.

          My favorite retail therapy is Barnes & Noble or the Hallmark store. It’s always peaceful walking around those stores and I don’t always buy something when I go. I’m fine just walking around, reading book covers or checking out the newest merchandise at Hallmark.

          Thank you for sharing so much of your life with us @kygon.

        • #34253
          Jen Cueva

          @colleensteele, I’m laughing so hard as I knew you would say something about the grocery store. You have mentioned delivery often, so I figured it wasn’t your favorite place. LOL

          Yes, Barnes and Noble is usually excellent; grab a SBUX and roam for hours. Hallmark, too; I love going to those; they smell good.

          , I also enjoy retail therapy at Home Goods, Marshalls, Target, and TJ Maxx. Now, I’m sounding like a shopaholic. But trust me, I don’t go as often as I would like, LOL

          BTW, I did relax and enjoy my salon appointment yesterday evening. Thanks.

    • #34245

      @Colleensteele LOL at Hate grocery store, .. that one is definitely not for everyone for sure but somehow I enjoy it now and again. I love Barnes and Noble! I don’t have any Hallmark stores near me but I do have a Home Goods and I adore walking around all the adorable displays and I don’t need to buy anything either but sometimes I just Have to have something I find there LOL.

      Thank you for listening!

    • #34279
      Randolph Reynolds

      I have been thinking about commenting on stress that is exacerbated by PAH.  Perhaps I’m taking this too seriously. . . a common habit of mine.  I couldn’t find the commentary by Mike Naples but that is ok.

      Yes I get stressed about being on supplemental oxygen 24/7 along with the hassle of tubing guaranteed to tangle up or trip you.  It wears on me but it keeps me functioning so why complain – live with it.  Ever since my diagnosis of CTEPH I’ve been overly sensitive and it takes mental energy to keep the volume of that down.

      The comments by ky are good.  It always helps me to know that there is a group of us who can share and that reduces the sense of being alone.  Like you all I stay active, probably more social that I was before all this came about.  It has been over eight years and things are much better these days.

      I wish you all a blessed day.

      • #34284
        Colleen Steele

        @ripple76 my son would whole heartedly agree that being on oxygen 24/7 is stressful. Do you primarily use a portable concentrator when you go out or do you use cylinders?

        Because of Cullen’s age we couldn’t get him a portable concentrator that would handle the high flow he needed, so he always used cylinders. Oh the stress of making sure he always had enough with him, especially at school!

        You have previously mentioned multiple stress factors you are struggling with but I can tell that you try hard to see the bright side of things and enjoy life how and when you can.

        I wish you a blessed day too and a nice weekend!

      • #34293
        Jen Cueva

        Hi @ripple76, Oh yeah, oxygen can undoubtedly add to the stress we deal with daily. But, I love how you share that while it exacerbates your stress, it also keeps you “functioning.” Despite the many challenges that life throws your way, you’ve been one who finds the silver lining. That’s key here and helps us when we start feeling that PH has taken much away from us. I also try to remind myself what it’s added to my life- you all here, for example, and the for me to see how strong I am despite how I feel many days.

        Here’s the link to Mike’s column, Mike’s Column- Stress Exacerbates PH

        You’re entitled to complain and be grateful, my PHriend. We can experience both emotions at once.

        I hope that you and your wife had a realing weekend. Take care, and please pop in anytime.

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