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    • #17803
      Colleen Steele
      Keymaster

      I have kept a diary/journal since I was 8 years old. It has been so therapeutic for me almost my whole life to write down my thoughts of regret, hopes, dreams, fears, etc.. What I found most valuable is going back and reading past entries because often I am surprised by how much I have achieved or overcome without realizing it. You know, there’s always the next thing to worry about and sometimes we don’t slow down enough to reflect on what we have already been though.

      If you haven’t tried keeping a journal I highly recommend it! You might be surprised by the benefits. I found this wonderful article to encourage you to give it a try and to help get you started. Do you already keep one? If so, share with us how journaling has helped you.

      https://positivepsychologyprogram.com/benefits-of-journaling/

    • #17821
      Brittany Foster
      Keymaster

      Hi Colleen,
      Really good topic ! I know that writing in a journal, typing on a laptop, just getting down all your thoughts on paper can be so beneficial for your mental health and just to see how far you have come. For me, writing helps me to process my inner thoughts, it helps me to make sense of things that seem hard to make sense of at times. When I write, and even when I write my columns, it is like the words just sort of pour out without me even realizing what I’m writing until I read it afterwards and I’m like “wow that made sense”. I started writing down my thoughts and feelings that seemed really heavy for me when I was in therapy. At first I didn’t re-read it and I would just put the journal away and read it out loud to my therapist. Realizing themes, lessons, and ways that I could change my thought pattern. It was very reflective an therapeutic for me and it still is. I really liked the action of writing pen to paper but with all my columns I like to type it all out. Sometimes just typing away on the keyboard on my laptop is a stress relief in itself hahaha!

    • #17822
      Jen Cueva
      Participant

      I love this topic , Colleen! I’ve always been a writer in some sort . As you mention, I started journaling as a young kid, probably about the age of 8-10 . It was just after my parents divorced and I found that I could write about my feelings. Back then, it was simple things and often funny to go back and read . I sure wish they did not get lost with the moves we made when I was young.

      Today, I have a Gratitude Journal, I try and write every night before bed( sadly some nights I pass out on the couch )even if it is a one sentence statement. There are so many things to be thankful for, even on our worst days and I think that it’s so important to remind ourselves of those things. I think since having PH , I’ve been journaling off and on and I think now , I will try to do some of my journaling on my Blog, once it’s up and relaunched.

      I enjoyed the article and I agree that journaling in some way , as there are so many ways that we can journal , it helps us to have self-awareness and improves mental wellbeing.

      Thanks , this is an important topic for me and I’m wondering if others have tried journaling as well. I also wonder if women tend to journal more than men.

      • #17827
        Brittany Foster
        Keymaster

        Jen,
        you’re so right ! Journaling helps in so many ways and it’s always good to just get out what we are thinking about and especially all the fears and worries that could be running through our mind. I think it’s an amazing idea of yours to keep a gratitude journal. There are even some specialty journals I have seen at stores that have writing prompts that get your thoughts going around a certain feeling or topic like “giving thanks” , “practicing patience” etc. I find these very helpful ! My mental health is just so much better when I write. It has been so important for me to exercise my mind.

    • #17828
      Colleen Steele
      Keymaster

      I had the feeling that the both of you would enjoy this topic and I hope others will jump in and share that they journal too. Jen, I almost suggested in the original post that journaling is not just for women. I do know men who have kept journals for all the same reasons that we covered. I tried to get both my boys into it but it wasn’t their cup of tea, so to speak. However they were young and I’m hoping maybe as they get older they will revisit the idea.

      • #17830
        Brittany Foster
        Keymaster

        Colleen,
        I feel like social media platforms are also a good way for others to “write” and get out their feelings. Even if it’s just describing the impact of a picture on instagram or creating an updated Facebook post. For me, when I don’t have my laptop handy or just want to write and allow others to see and share in my vulnerability I go to social media and many people can relate to my posts and comment. It’s definitely something that helps even those “non writers” still express their words. My boyfriend doesn’t exactly journal, but he has written song lyrics in the past and has written a lot of poetry style writing that could be a song. Maybe if they are musical at all this could be a creative outlet for their inner worries/feelings? I know it helped some of my students to “write raps” vs journaling.

      • #17833
        Jen Cueva
        Participant

        Thanks Colleen!

        On your thoughts of men journaling, I have not known many men who do, so hoping to hear from other men here and see that they do as well. Just last month, my Dad’s oldest sister passed away and my Dad said he was able to get a hold of his “Pappy’s” old diaries, which would have been my Great Grandfather. He wrote in it everyday, it was all in pencil and I was so excited to hear that and cannot wait to go visit my Dad and read some of these with him. I have always been the one who thinks these things are so awesome when we have them and cherish those simple little things.

        That story made me question if maybe more men journal than I thought.

        • #17835
          Brittany Foster
          Keymaster

          Jen,
          I would think that they do have their own outlets and ways of expressing their feelings and emotions. It’s sometimes different though from male to females in how we share and express things. I think that’s why support groups and online forums that can give EVERYONE no matter what gender you are the place to do this is important. I also believe that anyone can benefit from therapy and just someone to talk to that isn’t going to judge. Physical outlets are very popular with a lot of my friends that are guys. Things like surfing, playing sports, going to the gym etc can be a good stress relief.

        • #17836
          Jen Cueva
          Participant

          Thanks Brittany, I do see more males who prefer the physical outlets, my hubby for example, cycles and works out.

          I agree, I think online groups are beneficial for anyone, but also just interested in the journaling from a male perspective. I wasn’t saying they cannot or don’t journal, just do not know of any off the top of my head, except my Great Grandfather, which I just recently learned.

          Great topic and points, thanks.

        • #17844
          Brittany Foster
          Keymaster

          I’m sure you will learn so much from his journals too ! That’s amazing to have that memory of him! I know your family will be happy to share in that memory too. I wish we went back to the days of love letters instead of text messages. I’m way more old school and still leave my boyfriend love notes sometimes. It’s just something I would prefer over a quick text.

        • #17850
          Jen Cueva
          Participant

          Thanks Brittany, I’m so excited to be able to read through those with my Dad.

          Aww I know, I love “ snail mail”, love letters and those “ old school” smile acts of kindness. I guess I’m a tad old fashioned too. I leave my hubby love notes often , usually on the kitchen counter so he sees it before work or sometimes in his lunch pack.

          Last year for Father’s Day, I wrote my Dad a 4 page letter sharing my favorite memories with him and just how special he is to me. He cried, and he’s not really a sentimental guy.

        • #17853
          Brittany Foster
          Keymaster

          That’s truly beautiful to do, Jen. I’m sure that is something that your husband and your dad both cherish so much. Those things truly can’t be replaced. I have saved the notes that my boyfriend used to write for me and always look back at them when I see them in my drawer. It really is something that is so simple yet so loving.

        • #17867
          Jen Cueva
          Participant

          Thanks Brittany, I love and treasure those simple things as well. When my hubby was in the Navy, before we were married, he wrote me letters all the time. That is a lost art and treasure , in my opinion.

          Now, my hubby takes the little sticky notes I give him for work and post them on his work area. I told him that all the other guys will be jealous, hehe

        • #17871
          Brittany Foster
          Keymaster

          I love sticky notes ! When I was a teacher, my desk was covered with them. Mostly they were there for reminders about all the things I had to get done in a day, but I wish they were love letters instead hahaha!

        • #17880
          Jen Cueva
          Participant

          Hehe Brittany, I, too love sticky notes and my hubby says I go through them like crazy!

          I think it is funny that we share the common bonds with ‘“Goodnight Johnboy”, we are all spread across the states. Too funny…

      • #17886
        Vanessa Vaile
        Participant

        Colleen, tell your boys that Albert Camus was as noted for his journaling as for his novels and essays. Journal keeping sounded too much like Dear Diary. I resisted until I read excerpts from Camus’ Cahiers (Notebooks) in my 20s.

        https://wordandsilence.com/2014/07/07/albert-camus-notebooks-favorite-passages/

        The entire Tolstoy family kept diaries. Some kept two, one to leave out for others to read and one to keep private. So goes the story, they’d get up at night to sneak about reading others diaries.

        Then there is the diary of fictitious Jonathan Harker… about Count Dracula.

        • #17893
          Brittany Foster
          Keymaster

          Vanessa,
          In one of the English classes that I was the special educator for, many of the students kept journals and they would write in them for the first 15 minutes of class. This helped them reflect and gave them a moment in the day to just pause. They could leave them for the teachers to read or they chose to put them in the “private only” lockers. But the majority of them eventually trusted us enough. Hearing their words was the most powerful thing ever and just really made us connect and understand them.

        • #17899
          Jen Cueva
          Participant

          Vanessa, thanks for sharing that information. I do think that more men journal than we realize.

          @brittany-foster, I, too, can remember a time in Elementary school when we did this same thing. We all had our own journals ( a composition notebook) and at the beginning or end of that class we were told to journal for a few minutes. I always enjoyed this as I’ve always loved writing. I remember with ours, we could decorate them , it was cool to see how everyone decorated their journals.

          As you mention, we could choose to allow our teacher and aide to read or we could keep it private. Thanks for sharing as I almost had forgotten that.

        • #17918
          Colleen Steele
          Keymaster

          I love the suggestions @vanessavaile! There 20’s are quickly approaching so maybe they will find some inspirations from these works. Both my boys have a gift for writing so I’ve been surprised that they haven’t pursued keeping a journal. Maybe it’s time to revisit the suggestion with them.

    • #17862
      Colleen Steele
      Keymaster

      I have enjoyed reading both of your responses to this topic @brittany-foster and @jenc! There are so many wonderful ways besides journaling, to use writing as an outlet. I also have maintained a Caringbridge for my son and that has been very therapeutic.

      I’m considering this topic for a future article so you might read this embarrassing fact again, but it was a man that inspired me to start a diary. As a little girl I had a huge crush on the character John Boy from the TV show, “The Walton’s”. That is how I got my start! LOL!

      Jen, how amazing it would be to read your great-grandfather’s journal! I felt teary eyed when you mentioned the long letter that you wrote to your dad. It’s a shame that the joy of writing and receiving letters is becoming lost to e-mail and social media. Brittany, keep writing those letters to you boyfriend. I love that you do that but most important, I bet he does too!

      • #17868
        Jen Cueva
        Participant

        Thanks Colleen, you had me laughing as I read about “John Boy”. My PawPaw would watch that when I was young and we always said, “Goodnight John Boy” when we stayed with them. Those were great memories. I cannot wait to read your post.

        I agree, social media, text, and emails have really taken over. I know its faster and in this busy world we live in, but I still write letters and use “snail mail” as I mentioned earlier.

        I am enjoying reading the comments here as well.

        • #17872
          Brittany Foster
          Keymaster

          Jen,
          OMG, my family used to do the SAME thing with the “goodnight John Boy” comment. When my friends would sleep over they would always love the “Foster Family goodnight” as they called it because of my family’s last name. It would be something like “night mom love you, night dad love you, night Mollie love you, night Aly love you” and then the next person would say everone’s name and at the end someone would be like “goodnight John boy” hahahah I love those memories !

        • #17920
          Colleen Steele
          Keymaster

          Good wholesome TV! We need more shows like these!

        • #17924
          Jen Cueva
          Participant

          I agree, Colleen, we need more of those wholesome family TV shows.

          Charles, I’m glad that you popped in and offered your thoughts on journaling . It is good to see a male perspective here. I look forward to hearing more from you .

    • #17903
      Charles Nester
      Participant

      Hey Collen, it is my a great experience that journaling is helpful to us somehow. I just shocked after seeing the article. It is outstanding and very beneficial to all of us and feels proud to become a part of this forum.
      Thanks a lot.

      • #17907
        Brittany Foster
        Keymaster

        Charles,
        Thank you for your positive feedback on the forums ! I agree that information like this that is supported by articles is very helpful for many of our members here. I know that I personally appreciate it and it’s always refreshing for me to know that I’m not alone in this condition and that I can come to a safe space like this and just chat with others who “get it !”

      • #17919
        Colleen Steele
        Keymaster

        Thank you Charles and it’s great to hear a man’s perspective on journaling! You are welcome voice here on the forums and it’s good to hear that the experiences of others are making a difference for you too!

    • #18293
      Randolph Reynolds
      Participant

      I have been working on a memoir of my life that ends where I discover I have PAH. I hope it will be available within a month. The question I floated around was traveling long distances. Has anyone of you folks managed to travel with oxygen and a pump to places outside of the range of a few oxygen bottles? My son was really disappointed when I explained the limitations on my travel to his upcoming wedding. I can’t figure out how this would work since my oxygen supplier is here in Arizona and I need to get to San Francisco.

      Thanks

      • #18303
        Brittany Foster
        Keymaster

        Hi Randolph ,
        I traveled with oxygen on a cruise for 6 days and took 40 (yes 40) oxygen tanks with me. Especially because at the time I was on continuous oxygen flow at 4 liters with exertion. I’m sure this depends on whether or not you or on continuous and high flow of a liter flow you would need. I would ask your doctor or your medical supply company about portable oxygen or something that you would be able to use for travel. Some are able to use pulse flow and some aren’t. There are some portable oxygen supplies that are continuous but I know they are heavy and would require a lot of charging and batteries. Are you driving or flying?

        Also. I can’t wait to read your book when it comes out! I would be really interested in reading more about your life and I’m sure it will help so many people.

      • #18313
        Jen Cueva
        Participant

        Random, I’ve traveled both via plane and car on trips with oxygen. I’ve been on a few trips via car with a ton of oxygen tanks. This was prior to my portable oxygen concentrator(POC). We were loaded down with all sized tanks. The other trips I’ve either rented a POC from my medical equipment company or had my own. I’ve also had my oxygen company arrange for extra tanks to my destination. I’ve lived in SoCal and had then delivered in Ohio, etc when I’ve visited family there.

        Even if your actual company doesn’t have a location in SF, they should be able to reach out to another company. There is definitely no need to add extra stress to your son’s upcoming wedding. There are also companies that you can get a POC for travel if you’re the company doesn’t offer them. I would suggest checking with them first.

        Here is the company I use and have for years. This is some helpful information.

        Travel Support

        How exciting about your book I can’t want to read it!

      • #18329
        Colleen Steele
        Keymaster

        Randolph, please tell us when your book comes out because I know we will want to read it! Congratulations, that is a great accomplishment and you will be helping so many by sharing your experience!

        My advice regarding the oxygen is the same as Brittany’s. With help from your doctor, oxygen supplier and the airline you should be able to work out your oxygen needs for travel. I’m sorry, I know the stress and hassle of it all but in the end it will work out. You can travel with oxygen and I hope you make it to your son’s wedding. Keep us updated!

      • #18331
        Colleen Steele
        Keymaster

        Randolph, here is the link that @jenc is trying to share with you. https://www.apria.com/other-services/travel-support/

        • #18336
          Jen Cueva
          Participant

          Thanks, @colleensteele.
          I’m sorry Randolph, my earlier comment this computer changed your name.

    • #18346
      Randolph Reynolds
      Participant

      Brittany,
      How did you get 40 bottles of oxygen and other equipment to the cruise ship? I have a lot of obstacles one of which is my POC won’t sustain me at the current pressures I need. Amazing. I haven’t called Apria yet. Very difficult to piece this together.

      Cheers

      • #18347
        Brittany Foster
        Keymaster

        Believe it or not, we got the tanks on the boat and notified them ahead of time that I would be bringing them. Some cruise lines actually have portable oxygen and accesible medical equipment that you can rent before your trip. I found the cruise vacation to be pretty disability friendly actually ! There were a lot of people on motorized equipment and a few on oxygen that I saw too.

        • #18352
          Jen Cueva
          Participant

          I am just picturing all of those 40 tanks, Brittany! I am sure that was a sight! thankfully, those were not weighed like luggage on a plane, LOL

          But, you make a great point, mentioning your cruise was disability friendly. I have seen more traveling avenues that are disability friendly, especially more than back in 2005!

        • #18356
          Brittany Foster
          Keymaster

          It’s lucky for us that more places ARE disability friendly. Including places like an airport, even restaurants and NOW there are beaches that are making ramps and the beach more accessible for those who need it. The beach that I go to is a private beach but we have ramps set up for those that are in wheelchairs or need assistance. Definitely helps ! Glad we are finally opening our eyes to these things in 2019 and making everyone feel more inclusive.

        • #18363
          Jen Cueva
          Participant

          So true, Brittany! I know even like 5 plus years ago in SoCal.I believe it was Ocean Beach , where they had a cool wheelchair available for free to those with disabilities. It was the most awesome thing, especially if you have ever tried pushing a wheelchair on the beach, lol

          I am hoping that more beaches will have this option when we go back in September. Things are improving, for sure!

      • #18350
        Jen Cueva
        Participant

        Randolph, you definitely should be able to get your oxygen to where you are traveling. Is this a road trip for the wedding or plane? Apria will hopefully be able to help you as well as your PH nurse or office. we are here to help with any additional help.

        There are so many options and this should not be an issue! We are with you.

        • #18355
          Brittany Foster
          Keymaster

          Thank you for the travel tips, Jen! It’s so good to know that we aren’t alone in this and that there ARE people who travel with oxygen, believe it or not ! I know we don’t always see it, but just because we don’t see it too often doesn’t mean it’s not possible. Thank you for those links too, I’m sure it will help others too.

    • #18379
      Colleen Steele
      Keymaster

      @jenc and @brittany-foster, since the start of spring I have considered making beach wheelchairs a topic but wasn’t sure how much of an interest there would be. Since you brought it up I decided to make it a topic because some people might not know the option is out there. I hadn’t heard of beach wheelchairs until recently. I wish I knew about them when my son had PH. He hates the beach and part of it is because when he he had PH walking in the sand was exhausting for him.

      • #18382
        Brittany Foster
        Keymaster

        Colleen,
        I can definitely relate to what you mean by walking in the sand being so difficult. I still find that even after my surgery and everything that was done, it is absolutely exhausting to walk in the sand. I tried just taking a walk down the beach and couldn’t even make it halfway because my legs were just so fatigued. That is usually the first sign that I am pushing myself too hard and over exerting myself and my lungs is when my legs feel like jello

    • #20391
      Randolph Reynolds
      Participant

      To all: This seemed to be a spot to say that my memoir was finally published and is on Amazon. I had to do what I could and it turned out to be very detailed. I mention my bouts with depression and anxiety before I was diagnosed with PAH but put in a chapter about having this disease. When I finished it was as if everything was over in my writing and my introspection. I have become depressed again. It seems to me that I have a lot of aging issues on top of my disease. I’ve gone back to getting counseling but dealing with the subject of death is upsetting. In my memoir I try to be positive and titled the book “Towards New Worlds”. I don’t journal maybe I should. After my stay at a hospital last March I began to lose my energy so I dove into writing about my live in aviation and how PAH ended that. Getting my mind off my immediate situation helps. Thanks for your support.

      • #20392
        Brittany Foster
        Keymaster

        Hi Randolph,
        I think that it’s amazing and brave of you to share your life with so many people. It really is hard to talk about the subjects of anxiety and depression and the fact that you covered this in your book is really commendable. I know that must not have been easy for you but I’m sure writing about it provided you with some relief and let you really be introspective. I’m glad that you are getting some counseling and I’m sure talking about it does help. I have been seeing a therapist for over 8 years now and have recently started to go twice a week because of health issues myself and being not in my right mind a lot to make reasonable medical decisions for myself so talking about it and getting her opinion and non skewed advice really helps me put things into perspective. I hope you know that you always have support here and a community of us who “get it” and understand what it’s like. Although we can never fully be in yours shoes, we do know a lot about these difficult emotions. Wishing you all the best, always!

      • #20574
        Colleen Steele
        Keymaster

        First, @ripple76 CONGRATULATIONS! I can’t wait to read your memoir! That is such a big accomplishment and I hope you have taken the time to really think about how fantastic it is that you have achieved this!

        Writing has always been the best way for me to express my emotions and come to terms with things going on in my life. Obviously, writing is something you enjoy as well so I would encourage you to use a journal. Is the writing your did about your experience with aviation in your memoir or is that something new that you started?

        Have you tried writing short stories? They can be a great distraction and there are places you can submit them to for publication.

        Thank you so much for sharing your news with us!

        • #20582
          Brittany Foster
          Keymaster

          I’d be interested to hear about what it’s about more too! you bring up a good point about writing short stories. I feel like a lot of times short stories don’t get the recognition they deserve. Some of the best movies have actually come from true life short stories! The movie “Brain on Fire” was made by articles published by an a news writer detailing what it was like to have a misdiagnosis while her brain was LITERALLY on fire inside. If you haven’t seen this movie I would highly suggest it

      • #20596
        Jen Cueva
        Participant

        Congrats to you Randolph,
        What a huge accomplishment and you should be so proud of yourself. I know that talking and sharing about our health, mental health issues, even more, is difficult. I am so happy for you and would like to learn more.

        I am sorry to hear that your depression is kicking back on. I know that for myself, starting therapy has helped me in so many ways. It also helps here as we can share and be open and honest with each other. We know everyone has their struggles and no judgment.

        Writing my column has also been therapeutic for me. I journaled before and still do. I love the idea of short stories, as Colleen suggests.

        @brittany-foster, yes, Brain on Fire was amazing. As you know I just watched it last weekend. It is on Netflix and I highly suggest it, too.

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