Viewing 8 reply threads
  • Author
    Posts
    • #32935
      Jen Cueva
      Keymaster

      With the new year and the chaos around us, we need to celebrate the little victories. Little wins each day are what make a difference.

      The sunshine has been out every day this week. I’m sending it to all who need that extra boost of Vitamin D.

      So, what went right for you this week? I’ll start. This morning, my oxygen saturation was 92% after waking up and waiting a while. This was without my oxygen. That’s why I waited since I used it all night. It’s been in the high 80s, so this is my weekly win. I’m elated, although I know it can fluctuate throughout the day.

      Let’s celebrate together!

    • #33001
      Jen Cueva
      Keymaster

      How’s everyone doing this week?

      I know many of you can relate. Mine, unfortunately, was short-lived, but that’s OK. I consider it a win either way. This week I am back in the 80s when my PH team prefers I use my oxygen 24/7. But I know it will continue to fluctuate, as I mentioned from day to day- some days throughout the day.

      I’ve been walking Sasha, our mini schnauzer, twice per day M-F while Manny is working. We don’t walk far, but it’s much more than I was doing before. We had a big yard in Texas that I would just let her out. That worked well, especially when I didn’t feel like moving and going outside. But here in the condo, we have to walk to her several times per day. So, I’m getting more exercise, which is a win for me.

      Have you rested more and listened to your body this week? Read any good books or watch any good movies that you’ve enjoyed?

      Where are your wins this week?

    • #33015
      Colleen Steele
      Keymaster

      @jenc I didn’t know you dropped into the 80’s this week. Getting exercise is good but on days like this I bet it takes will power to take your dog for a walk. Maybe there is a teen or someone your know who you can have on call to take Sasha for walks when you are having a bad day?

    • #33028
      Jen Cueva
      Keymaster

      Hi @colleensteele, thanks for that suggestion. I also know there is an App called Rover and probably others for things like this. I know Rover is for dog walkers, boarding, sitting, etc.

      I have yet to see many teens in my condo community. Mostly are younger kids. I know of one, and he is in high school, plays sports, and works, so he isn’t available.

      Thanks for your thoughtfulness, but I did walk Sasha twice yesterday. The afternoon walk was cut short as I noted I had increased SOB. But, I was using my oxygen and increased it to 5L while walking. This goes with @dawnt’s question, too, about raising our oxygen flow rate.

      How are you doing @colleensteele this week? Has your RA flare-up eased any for you? What weekly wins can you share? How are your parents? Is mom using the chairlift yet?

      • #33042
        Colleen Steele
        Keymaster

        @jenc my RA is doing a little better. When the temps drop at night and early morning I start to ache really bad again but ibuprofen has been helping.

        My week’s win this week was finally getting Cullen to Seattle for his ECHO stress test he was supposed to have over a month ago. He has an appointment with his cardiologist in February and I’m sure she will go over the results in more detail than what we read in MyChart. It looks like his heart is doing well. Perhaps a little wear and tear but not anything that they felt the need to immediately call him about.

        • #33050
          Jen Cueva
          Keymaster

          Hi @colleensteele, I’m grateful that you’re getting a little relief with your RA. But, I know my pain is worse when it is damp, wet, or cold. So, I’m sorry that you are having those flares. Does this usually continue all winter for you, then?

          Yay for getting Cullen’s stress Echo done. I hope and pray that you have a positive report when you follow up. But reading on his chart is helpful, although I know it’s not definite. Please keep us posted as you learn more.

    • #34122
      Jen Cueva
      Keymaster

      Yesterday Manny and I enjoyed most of the day at the beach. It was lovely and refreshing. I took a book and did nothing else except chat and enjoy the sounds and fresh sunshine. I didn’t take my phone out there, so I unplugged.

      What went right for y’all last week or recently?

      • #34125
        Colleen Steele
        Keymaster

        @jenc I don’t know why but I felt emotional reading your weekend update. I pictured you our there relaxing and loving life and it made me happy. I’m really impressed that you didn’t take your phone. I’ve gone for drives and have done that. I’ll get home and someone will say, “I tried to call you”. Ooops, I forgot my phone…wink-wink.

        What went right last week is that Cullen completed is dreaded statistics class and aced it! It was as hard as he expected it would be but kept at it and ended up doing well.

        Yesterday was a beautiful day in the Pacific Northwest so me and the boys took our dogs outside and gave them a much needed grooming and bath. Our husky loved it but our jack russell freaks out the second she sees grooming tools and water. But, we got the job done and both pups look perty. LOL!

        • #34132
          Jen Cueva
          Keymaster

          Aww, @colleensteele, your response made me warm and fuzzy inside. You’re such a kind soul. It was such a lovely day, and I wanted to take in the smells and sounds without phone distractions. I’m setting more boundaries with my phone. It’s a work in progress, but I often leave my phone on the table if I’m outside visiting my neighbors, as long as Manny is home.

          Those drives when you unplug besides the radio do you good. You’ll have the radio on if you’re like me, singing your heart to content as you drive along and enjoy the “me” time. Kudos to you for not answering your phone.

          Fantastic job to Cullen for acing his statistics class! What a scholar he is! That’s w colossal win! Please tell him how proud I am of him for keeping at it.

          Your day sounded lovely with the boys helping groom the dogs. (well, minus the freaking out, hehe) It’s great to get out and enjoy the beautiful days when you can, and amazing that the boys were there to help. WTG!

    • #34129
      Terry
      Participant

      What went right this week.

      Well got those cysts cut out around my eye this morning . Pretty painless except when I got home washed my hands and face and dried with towel forgetting about incisions causing one to bleed but alls good. Been wearing the hearing aid in my deaf ear. Its good. It is even hooked into my iphone so I dont have to put the phone to my ear to hear the caller . Actually had a bit of an issue with this. We were watching a subtitled film so I took the aid out but did not turn it off. Daughter rang from Thailand or wherever I answered forgetting aid on coffee table. Twice I told the boss must be problem with where she is as I cant hear her and hung up before I realised she was coming through my aid on the coffee table. Didn’t tell the not amused daughter when I rang her back ,must be her end.
      Tadalafil kicked in with the macitentan after a month and I am no longer walking around puffing like a dog . Actually feel normal at rest now but I wonder sometimes if I am  expecting too much with energy levels and have to accept I can no longer wrestle crocodiles irrespective of how many tablets I take. Life’s good.

      • #34133
        Jen Cueva
        Keymaster

        Hehe, @terry, I’m laughing with you about the incident where your hearing aid was on the coffee table. You crack me up not telling your daughter that it wasn’t on her end after all.

        Please be careful with the eye area until it heals. If you rub much at all, that area is tender, so it probably will bleed, especially right after having the cyst removed. Hopefully, this heals quickly, and you won’t have any more bleeding issues.

        I’m happy to hear that the tadalafil is kicking in, and you notice some improvement. But, Mate, you shouldn’t be wrestling crocs, for sure. I think we want to push ourselves and often need to accept that we have more energy than others some days. But with PH and other health concerns, our limitations are continually challenged. Once we learn to accept this fact, we will find we are grateful for what we can do versus what we can no longer accomplish. It’s a difficult concept to grasp.

        We are here to support you; we relate.

      • #34147
        Colleen Steele
        Keymaster

        @terry my dad wears hearing aids and I can tell you he has had many oops moments like you shared. God love him! I just laugh…I’m sure your daughter would too. Calling from Thailand though might be a funny later kind of moment.

        It must be a relief having the cyst removal out of the way. So happy to hear that Tadalafil is making a difference for you. I know from my son’s experience, sometimes getting results from new treatments or dosages takes patience. Not easy when it’s your health at stake. So glad you kept the course!

    • #34143
      Cathy Brown
      Participant

      I’ve had the best week in a long time. I feel like I sort of had a breakthrough last weekend. Like for almost two years since I got sick, I have been limping along, trying to put on a brave face for my family but honestly feeling sort of in shock and depressed about losing my old life. There’s been a lot of comfort food. But last weekend I decided I can start eating healthier, starting with one little habit a week. Like substituting an apple and almond butter for my normal afternoon hot chocolate a couple of days a week. I’m not giving up the hot chocolate completely! And then maybe something else the following week. I saw my PH doctor yesterday and asked him about pulmonary rehab and he said I should just do my own rehab. Start walking a little faster and a little farther and maybe lift some light weights. So I did a brisk 30-minute walk last night with my oxygen backpack, and it felt good. He wants me to switch from Uptravi to subQ remodulin but said I can wait until after summer so I can swim in our backyard pool. That will make the Phoenix summer so much better. He thinks I can probably make it another 20 years, which is the best news, because although I’m 59 years old, I have a 12 year old son. I want to thank you all for encouraging me to eat better.

      • #34144
        Colleen Steele
        Keymaster

        @catbrown way to go! Really, I understand how challenging self-care can be but you are accomplishing it. I think the way you are doing it in “baby steps” so to speak must help keep the goals realistic and manageable.

        I know how 12 year old’s can be…but is there any chance your son will occasionally go on walks with you? That will might make the goal even more enjoyable, unless you prefer to make that your “you” time to clear your mind.

        Congratulations on making positive changes to your health and routine!

        • #34148
          Cathy Brown
          Participant

          @colleensteele, that’s funny that you mention my son. He’s not much into walking with us anymore, but his dad nagged him last night, and after I had already walked about a block, Theo comes racing up with our 75-pound dog that barks and pulls every time he sees another dog. After about a block of that craziness, I had him take the dog home and Theo decided to stay home with him. I really just wanted to walk alone anyway. I like walking with my husband and dog, but they are so slow. The dog sniffs every couple of feet, I swear, and my husband moseys. So I’m thinking maybe every other day I’ll do a “me” walk and then the other days go with the family. When Brandon (my husband) is out of town, I do all the dog walking and take lots of treats to keep Chili under control because I don’t have the strength anymore for that craziness. I swear my next dog is going to be tiny!

        • #34175
          Colleen Steele
          Keymaster

          @catbrown having raised two boys of my own and remembering what they were like as pre-teens, I had a feeling walks with mom might not be on your son’s to-do-list.

          We have dogs too. I don’t mind walking our Jack Russell but our Husky gives me quite the workout. But when I walk it always is with a dog. Maybe I should try some “just me” time walks.

        • #34178
          Cathy Brown
          Participant

          I have always walked with dogs too and enjoyed it. This dog, though, is the hardest dog I’ve ever had. He’s way too protective, so his barking at other dogs and sometimes people is not always friendly. I’ve gotten to where I make him sit and stay anytime I see a dog approaching. He’s very smart and tries to please, so he does this pretty well. But if I don’t see a dog in time, it’s the old lunge and bark routine. As you can imagine, this isn’t always the most relaxing walking routine. I’m always on the lookout for his triggers–dogs, bikes, scooters, people who say hello too brightly. I will say I never worry that anyone will attack me when he’s around. I was working with a trainer to try to get him under control but got overwhelmed with other things, and that fell by the wayside a couple of years ago.

      • #34160
        Jen Cueva
        Keymaster

        Hi @catbrown, I’m so happy to read about your changes, and this shift in mindset will undoubtedly offer a boost. It sounds like you are doing an amazing job trying to take care of yourself. Little changes are the best because we can stick to those better. I also agree with not totally giving up your hot chocolate.

        I was going to suggest a family walk until I bread farther down your comments. So, “me” walks sound like the best option for you most days. Waiting until summer to transition to the pump sounds like an excellent plan. Would you be getting a wetsuit to swim in your pool next year? I can imagine it helps you stay chill in the sweltering Phoenix heat.

        You’re doing such a fantastic job! If you stumble with your eating habits one day, start again the next. Try not to be too hard on yourself. Thanks for sharing such an encouraging yet inspiring update; cheers to 20-plus years, my PHirend!

        • #34179
          Cathy Brown
          Participant

          A wetsuit! That’s a good idea! I was figuring after this summer, I would just give up swimming. I’m not used to having a pool anyway. My doctor says no swimming, but I’ve heard other people say they find ways to cover up and go anyway, so maybe I will find a way.

        • #34198
          Colleen Steele
          Keymaster

          @catbrown my son wore dry suits to go swimming. The only place that made them at the time, especially for children, was in the UK. We had to special order it and it was expensive but worth it! The only problem is the zippers eventually give out and start leaking and then you have to send it in for repairs.

          I mentioned in a column how we got Cullen ready to go swimming when he had PH and was on Flolan. It includes a picture of him wearing one. Maybe I’ll dedicate an entire column to it in the near future. Below is a link to the column and a link to where we ordered the dry suits.

          ‘Phantom PH’ Haunts My Son Long After His Transplant

          Hammond Drysuits

           

        • #34211
          Cathy Brown
          Participant

          Thanks so much!

    • #34152
      ky
      Participant

      @catbrown So happy to hear about your week and being able to enjoy the summer before you start the pump, our daughter was on the pump and before she got it we also went swimming and boating as much as possible. Our youngest is also 12 year old and we have two crazy dogs, a golden and a little aussie and I just wanted to ask if you tried, or heard of a gentle lead?

      My 100lb golden retriever wants to pull us face first into the pavement.. I tried everything and I almost gave up walking him until my daughter in law told me to try a gentle lead, it pulls their head down and to the side… and ta-da.. they CAN’T pull.  Now I can walk both my crazy dogs without my arms getting yanked out of socket or getting dragged face first into pavement. Oh and my 12 year old can handle him as well now, When and If I can get him to walk with us,.. I usually have to bribe my son with an ice cream or soda to walk with me these days.

      I just got the one at petsmart but there are many options on amazon etc. (I tried to link something here but I couldn’t get it to work for some reason) IF you decide to try it, just make sure it’s the one that pulls their snout down, the ones that attach to the chest didn’t work for me. (sorry for the novel, but I was really excited to find something that would work)

      • #34153
        Cathy Brown
        Participant

        Thanks for the tip! I hadn’t thought about a gentle lead. He usually only pulls when he sees other dogs and then sooo much pulling and barking.

    • #34887
      Jen Cueva
      Keymaster

      I can’t believe it’s almost July! The temps are warming up, and most are getting out a bit more.

      I have been trying to get back into doing a few simple exercises. That’s what’s going right for me this week. What about you?

Viewing 8 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account