Pulmonary Hypertension News Forums Forums Our Community Weekly Wins What Went Right This Week?

  • ky

    Member
    May 11, 2023 at 12:15 pm

    @JenC, just got home, I am pulling the 3-7 am shift with baby (mamma is pumping so I can help out and they can sleep) Lennox is darling in every way and I absolutely love this uninterrupted time that is ALL MINE then in the evening Bryan and I go over so they can shower and put away cloths etc. And I usually do dishes while papa Bryan naps with his little man, he goes between calling him glow worm to little man depending on if he is swaddled or not LOL. I call him little prince Lennox or your majesty when he dramatic LOL.

    Love and Light Everyone I hope you all have something positive and amazing to look forward to this week! I will pop in and out when/if I have time

     

    • jen-cueva

      Member
      May 11, 2023 at 2:18 pm

      Hi @kygon, the parents are all so fortunate to have you and Papa Bryan to help. I know from having little ones that extra hands are always a huge help, especially with your first baby.

      However, I also know this is a blessing, and you and Bryan love this quality time and cuddles with Sir Lennox, the glow worm; hehe.

      Now don’t forget to take time for yourself and get some rest, too. Such a precious time for the family! <3

  • ky

    Member
    May 17, 2023 at 8:00 am

    @JenC, Oh no worries now that he is one week old they are getting a hang of the night shifts so I just go in afternoons and or evenings. Although eventually this will be an every Other day thing hahaha but that newborn stage is just so short I don’t wanna miss out!! Loving every second of his newness!

    • jen-cueva

      Member
      May 17, 2023 at 12:52 pm

      Hi @kygon, so grateful that Mom and Dad are feeling good about the night shift. That’s always the most challenging time, especially when newborns wake so often through the night.

      How is Sir Lennox doing with sleeping at night?

      I imagine I would be like you with a precious grandbaby. Yes, they grow so fast, so enjoy each moment with him. I’m sure he loves the extra attention, too.

      Have the parents had any funny stories yet as they grasp this newborn parent lifestyle? It seemed we had so many laughs when we thought back at things when our babies were that tiny!

      Enjoy your time with Sir Lennox in the afternoons, and spoil him rotten. That’s what grandparents do, right?

      Much love, hugs, and light coming back to you, my beautiful friend.

  • ky

    Member
    May 17, 2023 at 1:51 pm

    @Jenc lets see.. Sleep, he is finally stretching to 3 to 4 hour spans which we all know is a life saver! She also pumps so Tyson takes the 10 pm to 2 am and she takes the 2 am till 8 am giving them a chance to catch up and keep up.

    The funniest is Tyson actually recorded Lennox filling his pants because it is so loud and Tyson is just laughing through the entire thing but you can hear still hear it very well LOL

    Oh and mom and dad have both been peed on at the same time, that was hilarious to me! Tyson got pooped on in the first 3 days, I told him its official your real daddy now.. hahaha And he sent a picture of Lennox smiling to like everyone and it has his wife’s nipple in the pic! Hopefully no one noticed bc I didn’t and sent the same one to a few people too! OH DEAR hahaha

    They are getting the swing of it really well I just go to snuggle him while they do things on the to do list.

    Sending much love and light and wishes to be as happy as I am getting them sweet new baby snuggles .. it’s like the best kind of drug! I am so addicted!

    • jen-cueva

      Member
      May 18, 2023 at 2:05 pm

      Hey @ky, Sir Lennox is sleeping pretty well for being so young. Yes, those 3-4 sleep spans are great for the parents, too.

      OMG, I’m dying laughing at Sir Lennox being so loud when filling his pants. I bet Tyson laughed while witnessing this little one’s loud pooping. He’s a perfect fit for the family; God Bless him after that performance. Hehe.

      What did the DIL say about that nipple slip? That would only happen when a man is behind the camera, hehe.

      Yes, take all the snuggle time while they are doing tasks. Maybe they can go out to dinner, and you can have him 100%. Papa Bryan will have to share the love and snuggles, too.

      I can feel the excitement in everything you share about Sir Lennox- so precious.

  • jen-cueva

    Member
    May 31, 2023 at 3:07 pm

    Despite a challenging few months, it seems now, I’m excited to have “our kiddois” here with us for a few days this coming weekend. KK and our “son-in-love,” which we call the kiddos, are in Long Beach for a Jujitsu competition. Our SNL won 3rd place in the International Masters. This was only his second competition.

    Our daughter did not compete in this one; she was in one a few months again and was 2nd place in her weight division. They both are so strong and dedicated to Jijitsu.

    We’re excited to spend a few days with them before they head back to Houston.

    What are you looking forward to this week? Do you have any tiny victories you want to share with us?

    • Colleen

      Member
      May 31, 2023 at 5:35 pm

      @jenc I am so happy for you to hear that your daughter and son-in-love is visiting! Do you have any special plans while they are here?

      I’m so sorry you have had a difficult past few months…and all while I have been away! So let me ask you….how can I help? Is there anything I can do for you FWW?

      Life for me and the boys right now is adjusting to life without Brian. What has been going right is how we support each other and are navigating this difficult journey together.

      • jen-cueva

        Member
        June 1, 2023 at 12:52 pm

        Hi @colleensteele; so good to see you pop in again. We missed you so much! I’m sure it’s been tough figuring out how to carry on without Brian, but he’ll always be part of the team with you and the boys.

        Imagining how tough this is for you is impossible. Don’t worry about figuring everything out at once. Give it to God, let him guide you, and take it one emotion at a time. Be kind to yourself in the process.

        You’re so kind, my FWW, but I’ll be OK. I am focusing on allowing myself more time to rest, and leaving tasks “unfinished” is OK. I appreciate your support, as always.

        Yes, we are excited and will be at the beach one day, and who knows, the rest of the time. We are just happy they will be here tomorrow afternoon.

  • Carol Volckmann

    Member
    May 31, 2023 at 8:03 pm

    Weekly wins! Ending May on a weekly win is special – still in its light.

    After a couple of months of more health issues and frustrations Memorial Day weekend was great. We headed south in our motorhome called Pogo with our 9 month old Golden to see our tein granchild graduate from high-school.

    Seeing the whole family after a whole year was grand. We ran into a real problem when the state park we thought we had a reservation was not… panic! All turned out great as we were able to park in our daughter’s driveway!

    All the negative health stuff faded in the distance as we spent quality time with the kids. We are so proud of all three of them and so very proud FOR them.

    That was/still is our weekly win!!
    😊❤️

    • jen-cueva

      Member
      June 1, 2023 at 1:07 pm

      Hi @cdvol3gmail-com, I’m so happy you could travel to see your twin grandkids graduate. What a wonderful celebration this must have been for all of you after not seeing each other for so long!

      Oh no, that’s not good about them losing your reservation. Thankfully, you could park on your daughter’s driveway. That was even better, making more time to spend with them.

      Isn’t it funny how our health struggles take a backseat in those times? I’m grateful you and Dick could do that and enjoy your time with your lovely family.

      I bet Cloud enjoyed all the love and playtime he had. Are you three recharging this week? Extra love, hugs, and prayers are coming your way.

      Hopefully, this new reset will help pave the way to a better few months ahead.

      • Carol Volckmann

        Member
        June 1, 2023 at 7:44 pm

        Hey Jen, It was a great visit and celebration. You’re right health issues do tend to fade when you’re with loved ones. A 24 hour tummy bug 🐛 😩 got me but the worst part was over in 24 hours!

        Cloud had a ball with the kids and at 2 different dog parks at State Parks on our way home. We get home tomorrow and yes again, time to recharge. I hope to have all medical appointments have successful outcomes. 😊

        The weekend will be cleaning out the motorhome THEN recharge!

        Hugs to you and I hope your visit with the kids are grand and full of love ❤️.

      • Colleen

        Member
        June 1, 2023 at 10:03 pm

        @cdvol3gmail-com I wish you a happy Home Sweet Home tomorrow! Take your time cleaning out the motorhome. Been thinking of you!

      • Carol Volckmann

        Member
        June 1, 2023 at 10:52 pm

        Thank you Colleen. You have put a warm smile on my face. Sending you warm, gentle hugs. You truly are one of the strongest, kindest women I know. ❤️

      • jen-cueva

        Member
        June 2, 2023 at 12:37 pm

        Hi @cdvol3gmail-, welcome home today! You deserve a break, my friend. Please take a few days before you try to tackle the motorhome.

        I’m sorry about the stomach bug; that can’t be fun with your other GI issues.

        I bet Cloud is tired after the excitement and playtime with the kids.

        We pick the kiddos up this afternoon, so I am so excited. Thanks for your support. PS. I didn’t get all of my cleaning tasks completed. However, Manny stopped me last night. He reminded me that I needed my energy for the weekend.

        That guy, he is always looking out for me. Even when I think he’s wrong, I’m grateful, hehe.

  • brenda-denzler

    Member
    June 1, 2023 at 7:26 am

    Weekly win? I dusted my living room! LOL! Since I dust about twice a year, you can imagine that this is a red-letter week! 🙂

    Actually, I’m going to go take care of my dad for a couple of weeks, and I have a pet sitter coming in, so I didn’t want her to have to live in this amount of dust. Also…. one of the disadvantages of having grandkids that know how to write is that when they come to your house, they write in the dust! Had to get rid of all that!

    A “not win” this week is that this rash I have that keeps spreading may be shingles, and I just found out that shingles in contagious. So once again, I’m not welcome in pulmonary rehab.

    However, a “win” is that I am learning (partly in pulmonary rehab) that if I don’t try to go full bore, but if I slow down and pace myself, I can go for longer before I get chest pain. I think the breathlessness may be getting better, too, but that’s a bit harder to judge.

    • V.R. Peterson

      Member
      June 1, 2023 at 8:25 am

      Yay for the win! How are you feeling after dusting?

      If you’ve got shingles, your doctor can prescribe an anti-viral that might lessen its duration and severity. If you want to go that route, the quicker you start the medication, the more effective it is likely to be.

      If you’ve got L-Lysine cream around the house, that may help fight the virus that causes it, as well. There are oral versions of L-Lysine, but I’m not sure if they’re safe for PH patients. You’ll want to ask your doctor if you decide to try the oral version.

    • jen-cueva

      Member
      June 1, 2023 at 12:59 pm

      Wow, that’s a big win, @brendad53! Too ironic that I have been intending to dust for a week. I did get one area done and hope to tackle dusting my room today. For some reason, this is one chore I don’t care to do, but it’s been overdue.

      I’m laughing at reading your grandkids write in the dust. They tend to do that on cars, too.

      How do you feel about traveling again to be with your Dad?

      Shingles? Ouch, I hope the remedies that @mamabear007 suggests will offer you relief. Are you also having pain with the rash? My mom had it once, and she was miserable. I assume you’ll get that treated before you travel to stay with your Dad, right?

      Thanks to rehab, another “win” sounds like you are learning to pace yourself. That’s always tough to know and stick with, especially when you live alone and do everything. I hope this continues and you’ll see improvements in the coming months.

      When are you leaving to be with your Dad?

    • Colleen

      Member
      June 1, 2023 at 10:00 pm

      @brendad53 I’m sorry you have poison ivy but I suppose it’s better than having the shingles! What we don’t go through for puppy love!

      How are your grandkids going to entertain themselves now that the dust is gone? I laughed out loud at that! There are days when as an adult I would debate with myself…dust or write my name in the dust?

      I hope all goes well with your dad. I’ll be thinking of you!

      • brenda-denzler

        Member
        June 2, 2023 at 9:02 am

        Y’know, Colleen, as a writer and editor and an old human being with lots of experience under my belt, I thoroughly approve of the use of the word “adult” as a verb, nowadays. Adulting can be such a pain! Like feeling you ought to do something, because that’s what a grown-up would do. Like dust.

        True story: When my (now ex-) and I were first married, we lived in an old, old farmhouse in Ontario. No insulation! And although we had a mud room off the kitchen, the mud room never seemed to catch every bit of dirt. Over time, the kitchen floor became more and more filthy. I swept it constantly. But it just kept getting dirtier, eventually edging right up there close to “disgusting”. One night I was sitting in the living room, looking into the kitchen and thinking about how bad the floor looked, and it suddenly dawned on me: I used to watch my mom mop the kitchen floor! Mopping the floor is a “thing,” and I should probably do it! Honest to God, it had never occurred to me, before, to mop the floor!

        Duh!

        Adulting is hard!

      • V.R. Peterson

        Member
        June 2, 2023 at 9:42 am

        @brendad53, now Roomba has a robotic mop that will do your mopping for you. They’ve got a combo mop vacuum, but that one costs quite a bit more than the one that just mops.

      • brenda-denzler

        Member
        June 2, 2023 at 9:46 am

        I don’t have much mopping territory nowadays. But I want/need to re-do my floor coverings, as the carpet is becoming threadbare and the linoleum is cracking along seam lines. When I get rich (ha!) and can do this, I may have to consider a Roomba. Except that my dogs will probably break it by jumping on it, thinking it’s a toy for them. 😉

      • V.R. Peterson

        Member
        June 2, 2023 at 9:52 am

        I was sure our pup (no longer with us) would attack my eufy robot vacuum. It scared him, and the 80-pound Pibble ran to the safety of my computer room and had a nap until the vacuum had finished its job. 😂

      • brenda-denzler

        Member
        June 2, 2023 at 10:00 am

        LOL! To think that we rely on them for warning and protection! LOL! Let an axe murderer come in the front door and set down a Roomba, and the humans are on their own! 🙂

      • V.R. Peterson

        Member
        June 2, 2023 at 10:19 am

        Zeus would invite them in and show them all his toys, in hopes that they’d play with him. 🤣

  • brenda-denzler

    Member
    June 1, 2023 at 4:49 pm

    Jen, the floors get me incredibly irritated if they get very dirty. But dust on the bookshelves? Not so much!

    I went to Urgent Care this morning to get the rash looked at. They said it’s not shingles. It’s poison ivy. Yet another gift from having 4.5 acres (wooded) and two large dogs that run through it freely. I have to have picked the poison ivy oils up from the dogs rubbing up against me when I was wearing shorts during a hot spell. Must’ve been Maggie, as the is the dog who owns me (according to her). Lily, her sister, is a welcome playmate (thinks Maggie), but an unwelcome competitor for my attention. So I’m fingering Maggie as the poison ivy culprit.

    I leave on the 15th and stay for 2 weeks. Not looking forward to dealing with him, but it may be better than I fear. We started him on Risperdal (?) because he was becoming paranoid. And he finally agreed to go into a different retirement home than the one we were hyping to him originally. Papers are signed and everything. So maybe this time will be easier? We can only hope!

    • jen-cueva

      Member
      June 2, 2023 at 12:31 pm

      Hi @brendad53, so glad you don’t have shingles. But sorry that it’s posing ivy. Hopefully, you can soak in an oatmeal bath or use Caladryl to help with the ivy.

      OMG, I had to laugh at your story to Colleen about adulting and mopping! Hehe.

      Wow, a Roomba that vacuums and mops? That’s incredible! We don’t have one. Zoe is scared of the small vacuum and Swifter already. Our condo is small but a larger place; I would maybe try one. I hate dirty floors. Manny swears I have some OCD.

      The living room was done another day. I did get my room dusted, although he made sure I was sitting to do the things near the floor. (Shh, he didn’t notice the living room, he was at work.)

      May you have safe travels to stay with your Dad. I will keep you in my thoughts and prayers that this placement will go well. Risperdal will hopefully help this visit go much smoother than anticipated.

      I know you will miss home and your “girls” as you are away for 2 weeks. Please keep us posted, and know we are here for support.

  • brenda-denzler

    Member
    June 1, 2023 at 5:07 pm

    Mama Bear, I feel psychological GREAT for having done it. And I feel so much better in my house. It just feels nice to have a clean(er) house around me. However, like Jen, I find that I’m having to pace myself a bit.

    If I was a smart cookie (which clearly I am not!), I would dust one piece of furniture every day. Just one. Not enough to exhaust me. But it would count as a “win” for the day, and as I go from one piece to another, in the course of the weeks, the whole house would be dusted on a regular basis, with not enough time elapsing between each piece getting dusted for there to be extreme amounts of accumulation. If I were smart, that’s what I’d do.

    Doc this morning said it isn’t shingles. It’s poison ivy. (Thank you, Maggie!) Your comment about L-lysine intrigues me. I’ve taken L-lysine when I have a cold sore. It knocks it out in no time, whereas if I don’t take L-lysine, the cold sore hangs on forever and gets really, really big and painful. Don’t know why I didn’t think of that in regard to shingles, which is viral, after all! Must remember this! And I’ll check into the possibility that it might not be good for PH patients…though this would surprise me greatly! 🙂 Thanks for the reminder about lysine.

    • V.R. Peterson

      Member
      June 2, 2023 at 7:08 am

      I’m so glad you don’t have shingles. That hangs around forever and is quite painful.

      Cool baths with colloidal oatmeal will help with any itchiness, even poison ivy. You can buy it, but it’s a lot cheaper to make it yourself. Just toss some instant oatmeal in the blender and whirl away until it’s a super fine powder. Caladryl lotion (the kind that has both calamine and benadryl is an age old treatment that my doctor recommended when my children had chicken pox. Oral benadryl will also help with the itch, but as with every other oral medication, check with your doctor to make sure that’s safe for PH patients.

      Prayers going up that you ditch the itch ASAP.

  • Debbie Moore

    Member
    June 7, 2023 at 3:11 pm

    I have been feeling so fatigued.  I begged my doctor for medicine to help me have any energy.  About a couple of weeks ago I thought about the length of my tubing.  I had replaced split tubing and replaced with longer tubing.  I was not getting enough air.  So my weekly win even though it was a couple of weeks ago is my fatigue is so much better.  I feel like doing things.  So YAY!

    • jen-cueva

      Member
      June 8, 2023 at 11:24 am

      Hi @debbie, Yay for less fatigue! You know, I think oxygen tubing is something we often forget to think about when we have increased symptoms. When I use longer tubing, I always turn up my oxygen a little. I know I taught my home health patients after a class with an RT in school.

      I’m grateful that you now feel like doing more. That will help make your Charleston beach and family trip that much better! What a win, we can celebrate each week you have this victory!

      Thanks for sharing, Debbie! What an incredible win!

  • jen-cueva

    Member
    September 26, 2023 at 8:27 pm

    It’s been a while, so let’s talk about our weekly or monthly wins! What small victories do you want to share? We want to join in with you and celebrate big.

    I can eat more and hold down food this weekend and the last few days. This is my weekly win! I’m about to make dinner and excited that I, too can eat with Manny. 🍽

    Let’s hear your wins! 👏

  • Linda Concoby

    Member
    October 24, 2023 at 5:06 pm

    I can relate to Debbie and her tubing. Without remembering, I had ordered 50′. Such a challenge underfoot, in addition to oxygen loss

    Got a 35′ the other day

    Such a difference!

Page 3 of 3

Log in to reply.