This topic contains 41 replies, has 6 voices, and was last updated by  Brittany Foster 1 week, 6 days ago.

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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

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