This topic contains 26 replies, has 6 voices, and was last updated by  Jen Cueva 4 months, 1 week ago.

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  • #18085
     Brittany Foster 
    Keymaster

    To all my fellow USA forum members,
    Are you starting to come up with plans for 4th of July? I know that sometimes it is hard to plan ahead when managing chronic illness, but the 4th of July has always been something that I looked forward to since I was a kid. It is always a great day spent with my family and friends at my beach house. Usually there is a parade for the kids and a band plays right at the beach after. It’s fun to be able to enjoy these things with my nephew, decorate in all red white and blue, and have a great crowd at my parent’s’ house. I usually have to remind myself to pace myself through the day because laying in the hot sun, being more active, and enjoying the occasional drink can catch up to me quick! If I don’t feel the effects of doing “too much” the day of, my body certainly pays the price after. But, this is one holiday I allow myself to have and ENJOY!

    How about you? What are your 4th of July plans? Do you have any 4th of July traditions? How do you manage to “pace yourself” when there is a long day of activities to keep up with?

  • #18105
     Jen Cueva 
    Participant

    It sounds like a great time at the beach for you and your family, Brittany! I know you’re looking forward to that!

    I always enjoyed going to the lake and watching the fireworks on 4th of July. The last few years we have missed it. One reason is that we don’t like to leave Sasha ( our fur baby) at home alone as she goes nuts with fireworks. I’m hoping that this year that we will be able to figure out a plan and go.

    If we don’t do that, we most always will have a BBQ with family and friends.

    No matter what we do, with the heat and humidity, I usually rest up until I get ready to go and still just have to pay for it afterward. I also take frequent AC breaks to cool off and put my feet up.

    As you mention, it is tough to plan ahead, but I try to do something on my fave holidays at least, which are most of them. It’s always fun to celebrate.

    • #18119
       Brittany Foster 
      Keymaster

      Jen,
      It sounds like you are taking good care of yourself to prepare your body for any upcoming fun! We SHOULD totally be allowed to fully enjoy our holidays but I know that sometimes our health gets in the way of us doing this. As long as we rest when we can and take those much needed breaks, it is easier to have fun and relax and enjoy the moment!

      The fireworks on the lake sound amazing. They do that near me too. The people that have boats are so lucky to be able to view them so closely. I understand about the dog being nervous around the fireworks. Back when my family had a dog, he was petrified of the loud noise !!! We couldn’t find him for days he was hiding under furniture.

      • #18123
         Jen Cueva 
        Participant

        Thanks, Brittany, I agree that we should be able to have some fun!

        I’m going out of town this weekend on a postponed Mother’s Day trip , so I’m hoping I’ll be rested enough in between to see the fireworks for the 4th. I’m excited for my true to see my Mom and Maw-maw who has Dementia. I haven’t been able to make that road trip for several years!

      • #18126
         Brittany Foster 
        Keymaster

        I’m so glad you’re able to do that, Jen! How far will you be travelling? Are you taking a plane ? I’m sure there is so much for you to pack and get ready but I know it will be a fun time . Can’t wait to hear all about it.

      • #18136
         Jen Cueva 
        Participant

        Brittany, thanks! I am super excited to go, but it’s a 7-hour road trip. My anxiety has already kicked in, I’m just reminding myself this will be a fun trip. This is the longest road trip that’s I’ve done in years! You know, I’ll be doing all the more work and taking my time as well as bathroom breaks along the ride.

        I have been packing since last night, lol
        I’m sure I’ll definitely write about the trip.

        My next one will be SoCal, definitely flying in September.

    • #18138
       Colleen Steele 
      Keymaster

      It sounds like all three of you, Jen, Brittany and David have nice plans for the 4th. Like Jen I don’t there is a holiday I don’t enjoy but the 4th has always been one of my favorites. I’m like a little kid when it comes to enjoying the fireworks. My son who had PH has had an amazing best friend since kindergarten and our whole family became close with his. We go to their house every 4th of July for fireworks, good food and wonderful friends. The only thing my son has to be careful of on this holiday, both pre and post transplant, is the smoke from the fireworks and the fire pit. He can enjoy them but he does have to step back a little further than the crowd.

      Have fun and be safe everyone! Can’t wait to hear about your road trip Jen.

  • #18112
     DAVID PETERSON 
    Participant

    Butte, Montana has a great fireworks display and parade. My wife is from here. And most of her family lives here and the rest migrate here for the 4th. I don’t think I will go to the parade by I can see the fireworks from my front yard.

    • #18120
       Brittany Foster 
      Keymaster

      David,
      How great that you can see the firework display and watch it from the comfort of your house ! Sure beats going out and watching them and then trying to beat the traffic. (It gets pretty congested with firework traffic near me!) Do you have cookouts at your house too? Sounds like a lot of people will be there. I hope you’re able to enjoy yourself

    • #18125
       Jen Cueva 
      Participant

      Sounds awesome,David! My Mom and Stepdad were out near Butte years ago working. The pictures that they sent were beautiful. I hope you enjoy the fireworks and hopefully a cold beverage of your choice and yummy food with the family.

  • #18134
     DAVID PETERSON 
    Participant

    Hi Brittany,
    Along with being a pharmacist I worked as a cook during college and cooked for my family full time. Lately I haven’t enjoyed cooking as much. But on the 4th we went camping at Seely Lake in Montana. Between me and my brother in law we would eat like Kings. I don’t think that will happen this year. It is high in the mountains and no power for my c-pap and oxygen. I guess I could stay at a motel.

  • #18142
     Vanessa Vaile 
    Participant

    Like David, I’ll have the near home comfort of fireworks at daughter’s in-laws big 4th of July gathering. Lots of fireworks and food (ranchers, so they’re into serious meat eating, broiled not slathered in high sodium BBQ sauce). Even so, I still salt-fast ahead and the day after. After Brown family fireworks, we can sit on the front porch (house is on a rise) for a good view of town fireworks.

    • #18144
       Jen Cueva 
      Participant

      Vanessa, that sounds like a great 4th! I hope that you enjoy the festivities!

  • #18150
     Colleen Steele 
    Keymaster

    Vanessa your plans for the 4th sound perfect! Enjoy!

  • #18151
     Colleen Steele 
    Keymaster

    I’m sorry David that you might not be able to do a camping trip to Seely Lake this year. I wonder if there are cabins available at a lower altitude with accommodations for your medical supplies? If not a motel isn’t so bad. I know it’s not the full experience that you want but I bet you can make the most out of it and still come home with lot’s of good memories.

    When you are able to cook what is your favorite type of food to make? Maybe you can plan a family dinner with your brother-in-law and others, where everyone chips in and helps prepare the meal? That way you are participating but not doing all of the work.

  • #18166
     DAVID PETERSON 
    Participant

    Colleen, I am going to try to go at lest a couple of days. I found out that my brother in law has 2 generators.

    • #18178
       Colleen Steele 
      Keymaster

      David, that is great! I’m so happy to hear this! I hope you do get to go and give us an update when you return!

    • #18180
       Jen Cueva 
      Participant

      David, sounds great ! I know a generator can be a huge help to us on oxygen. I always suggest if someone has the money to get one on sell, it’s a great idea! I hope that you enjoy !

    • #18190
       Brittany Foster 
      Keymaster

      David,
      I say if you have the generator and you feel safe enough then GO FOR IT! You wouldn’t want to miss out on it I’m sure and it seems like you really look forward to cooking and having a good time. I love to cook too. But my version of cooking for larger parties is just to make some appetizers or dishes that are a “no bake” type dessert OR pasta salad haha! I bring the adult beverages too and usually am quite the bartender haha!

      • #18214
         Jen Cueva 
        Participant

        Hehe Brittany, I’m usually like you for bringing items. It’s “ easy- peasy” unless I’ve rested most of the days prior to the event. Even then, some holidays, I’m still doing more “ easy- peasy”, lol

  • #18202
     Melainie Garcia 
    Participant

    We do not have big Fourth of July plans. No fireworks or picnics. Just laid back. We are preparing for a trip to Rocky Mountain National Park. July 4th is the calm before the storm, if you will. Smile.

    The other day, I thought of a perfect fantasy. I would like to share it with you and see if any of you would have the same fantasy.

    I would like to go on vacation to a perfect spot. Not to hot, not too cold, not to high, relaxation but the ability to do what I want when I wanted. (In all actuality that would likely mean a personal cart/scooter, I have started to think about that more seriously lately.) But the fantasy part of my trip is this….a home health nurse that takes care of my meds, my oxygen and worrying about all the details so that I can JUST ENJOY THE VACATION! Doesn’t that sound like heaven? I have even gone so far as to see how much that would cost. It can be up to $120 a day. (Still it might be worth it for a special, once in a lifetime kind of trip.)

    I think this fantasy is not to far from the joy we get as an adult when we buy a new appliance. You all know what I am talking about, right?? Smile.

    Have a safe and healthy holiday. Rest when you need it and remember to stay hydrated.

    Melainie

    • #18203
       Colleen Steele 
      Keymaster

      Melainie, I think you have really stumbled onto a great idea and not so much a fantasy. If you have the financial means or able to save for something like this, I think it would be worth every penny! For someone unable to afford a home health nurse the other option would be to ask a trusted friend or relative willing to learn your medical care and do gift you with their attention for a special trip.

      I would add that this would be a great suggestion for a primary caregiver too. If there is someone helping with your care, take them on this once in a lifetime vacation and hire someone else to do what they normally help with. This is really a great idea Melainie!

      The quiet 4th that you have planned sounds perfect too! Enjoy!

      • #18210
         Melainie Garcia 
        Participant

        I never thought of the caretaker. I manage my things pretty much on my own. My husband is my back-up. He carries things for me and is there for me when I need assistance, I pay him back by making certain he has free time to hike and do his bucket-list items for the trip. In Glacier, he wanted to do a hike on the opposite side of the park. That is a 3 hour drive away from where we were staying. That would have left my daughter and I stuck in our hotel with not much in walking distance. On 8 lpm, an E tank lasts about 1 hour and 15 min. Not much time to walk anyplace, look around, and come back to home base. Lunch is undo-able.

        So we employed an idea we have discussed but never have done. We rented a car for a couple of days. I kept our personal car, all of my oxygen is already in it, and he had the use of a rental to go do his hike and have fun. My daughter and I had a wonderful day and so did he. Win/win. It wasn’t cheap, $120.00, but it was worth e.v.e.r.y. penny. My enjoyment of our trip increase exponentially because I wasn’t trapped by my oxygen needs. I often am trapped.

        I really miss window shopping at the mall. I probably would not even really enjoy it anymore, but because walking at the mall is so difficult for me, I am finding myself almost craving it. Enough. I can find a way to make it happen if I really want to go. I have sisters that can push a wheelchair if I ask them do to it. I just need to be alright asking them to push a chair for me. That is something I am having difficulty allowing. Pride and independence hinder more things than help, I think. Ha!

    • #18208
       Brittany Foster 
      Keymaster

      Melainie,
      That really does sound wonderful to go on a trip and take a nurse or something with you so that you don’t have to worry about your health and they can do all the preparing of your health things for you! I know that this has taken up a lot of pre planning time and time spent on vacations for me and I would have loved to have someone assist me with that. I have a home health nurse that comes to my house a few times a week to check up on things but I am not sure about hiring them for vacations. I know families who have done this with their home nurse that they have hired privately. Definitely would be worth looking into especially because you seem like you would be so excited for that and it would really be something special for you to look forward to! I hope that you are able to do that one day. Have a relaxing 4th of July! Looking forward to hearing about your week/weekend and about your trip. I hope it’s great and as stress free as possible

      • #18209
         Melainie Garcia 
        Participant

        I think that if I were to do it, I would hire someone at our vacation spot. I would manage the travel portion of it.

        I am busy planning the trip to Rocky Mountain National Park as it is at 7500+ elevation. I know that I will be chained to the concentrator. But my husband really wants to go there and I am TIRED of being left behind. So, I have arranged for a condo that is next to a river in Estes Park. It has a balcony that faces the river. Apparently it is common to see elk and sometimes a moose on the grounds.

        While my husband and daughter go out in the park, I will have my own ‘hiking’ experience in the condo. Wildlife likely to be included. Works for me! This type of planning is what I try to focus on. Making all of our trips, win/win. Making sure I keep my needs in the equation of all of our travels, not my medical needs, that goes without saying, but my mental/emotional needs. I am the one who is not able to participate in all of the activities, it is up to me to make certain that I have activities that I can enjoy while other are away. Hopefully, I am always alone during those times. That will happen in Estes Park, but I am prepared for that to happen. I have plans to keep me occupied and not feel punished for being unable to breathe normally.

        I just need to lock down the oxygen tank storage situation. Since my increase to 8 lpm while ambulatory, I have to bring more tanks than before. I was successful with my plans when we went to Glacier last month, but Glacier is at a lower altitude. Luckily, my oxygen supply company has an outlet in Estes Park! How lucky is that?!? It will all be fine, because I will look for ways to manage all outcomes. It is what we all learn to do best. Right?

      • #18211
         Melainie Garcia 
        Participant

        I meant to say “Hopefully, I am NOT always alone during these times.”

    • #18215
       Jen Cueva 
      Participant

      Melanie, I love your “ fantasy” and I feel like it’s more a reality than fantasy . I hope that you’ll find support here as you’re not alone!

      That’s a high elevation, but I’m sure that trip will be beautiful. As Brittany has suggested, I don’t think that having a nurse there even if it’s every other day can be helpful. I don’t know your exact situation and limitations, but if you’ll feel better and you have a nurse at home daily, I would suggest you speak to them or your social worker through your current home health who may be able to help you some on vacation.

      Most oxygen companies as well will work with you and have your tanks waiting your arrival. Some meet at the airports or your lodging area. I did read that your company has that option. Be sure to lack extra meds and any supplies that you may need. Traveling with PH isn’t out of reach, just takes extra time to prepare.

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