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    • #24006
      Jen Cueva
      Keymaster

      Hi, y’all,
      You may have noticed a new section. Weekly Wins was made for you, our members, to share your wins each week. You can share more than once. This section is to remind us to find the simple things we can celebrate together each week. I will start first. Thinking about the last week, I called my Grandma and talked with her for about half an hour. She has dementia, I try to call her every few weeks, but it had been almost a month. We both enjoyed the call.

      I also did my weigh-ins each morning as I am trying to monitor my fluid a tad better. What are your weekly wins from last week?

    • #24014
      Brittany Foster
      Keymaster

      Hi Jen,

      One of my wins this week was advocating for me health and my body’s needs. During this time it is easy for me to just want to put things on hold and make them seem like they aren’t urgent or needed. But, the truth is, ignoring my health was just making me feel worse and worse during a time when I should have been feeling some relief. I kept letting my body down by putting things off. My win was definitely when I made calls to my PCP and cardiologist and worked with them to get a PICC line placed which I got done today. I will get my first fluid infusion tomorrow and I am also scheduled for my port placement sooner on Friday! Hoping all goes well and according to schedule ! But for now I have my PICC line which I am happy they were able to do.

    • #24016
      Colleen Steele
      Keymaster

      @jenc great topic! As I mentioned last week, I had appointments set to transition Cullen to adult care. We thought his appointments with his pediatric teams over the past month would be his last with them. Well, as I thought it would be, the transitioned has been postponed due to Covid.

      I touched base with all of his pediatric team and they are going to continue his care until further notice. I’m just relieved that he still has doctors to refill prescriptions and call if he has questions or concerns. Since we had said our good-bye’s to all of them I was a bit concerned about how they would react to us reaching out to them again. Not one gave us any issue. I shouldn’t have been surprised. They have always been dedicated to Cullen’s care.

      Anyway, getting that worry off my mind was a big win to me!

    • #24017
      Colleen Steele
      Keymaster

      @brittany-foster YAY! I’ve never been so happy to hear about a PICC line placement! I’m keeping my fingers crossed for that port placement next! Those are two definite wins.

    • #24023
      Brittany Foster
      Keymaster

      @colleensteele that sounds like a really big win for you! Anything to help you get your mind off of things is great right now . I am glad they were able to take him back and continue caring for him. That definitely is something that you didn’t have control over so I only hope that they would be as caring and as understanding as it seems like they are. My port placement is scheduled for Friday if all goes well and as planned. I still haven’t spoken to the nurse yet about it, but they will hopefully tell me more information regarding the procedure and what to expect soon.

    • #24054
      Jen Cueva
      Keymaster

      Hey @brittany-foster, so excited for this! This is a massive win for you and your overall health. I am happy that you plan to have the port placed on Friday. Awesome job on advocating for yourself! I hope that the infusions today helped some until you can have that port placed. Keep us posted.

    • #24055
      Jen Cueva
      Keymaster

      Excellent win, @colleensteele! I am happy to hear that you can rest knowing that his pediatric team will follow him until you can make this transition. This is so important, and I am sure that you can breathe a little better now.

      It sounds like they were caring and supportive, which was a huge relief for you and your family. Thanks for sharing!

    • #24057
      Colleen Steele
      Keymaster

      Thanks @jenc @brittany-foster. I shouldn’t have been surprised that they were all accommodating. I have a habit of worrying over nothing. My concern was how anxious everyone was to get him transitioned – and now this setback. At least we are all in the boat together.

    • #24076
      Brittany Foster
      Keymaster

      Jen,

      Definitely a win to be able to get some fluid yesterday. Even though it was just a liter, I know my body must have really needed it because even my hands were a bit swollen today. I notice that the more dehydrated I am, the more swelling I notice in my body when I actually do get that water in!

    • #24078
      Brittany Foster
      Keymaster

      Colleen,
      Oh yes ! Transition care can be so hard, especially for the parents and the patients. And getting the doctors to give all information and share info with one another can be a challenge in itself. I hope that goes as smooth as possible. In the middle of a pandemic I’m sure it’s such added difficulty ! I really can sense the tension all of the doctors are under right now.

    • #24090
      Jen Cueva
      Keymaster

      Yes, I, too, am a worrier @colleensteele. You were concerned about your son and this transition. I am so happy that they were so accommodating. This all will fall into place when this is over. At least you have everything ready. It sounds like that y’all just needed to go in and meet the new team.

      Try and relax some during this “break.”

    • #24206
      Jen Cueva
      Keymaster

      This week, I washed my sheets, which is huge. Do y’all have a tough time washing your bedsheets? The washing part is not as difficult as putting them back on. Do y’all have a tough time doing this? It can be exhausting. I usually fall on top of the sheets once I get them on. Often I do this when my hubby is home so he can help.

      I also have done my Yogo via Youtube twice. I am hoping to do it again later today.

      What wins would y’all like to share this week? It is rainy and chilly here today, so I may just read and watch Netflix. That is perfectly OK, too.

    • #24932
      Jen Cueva
      Keymaster

      What’s going on in your life this week? Have you learned a new recipe? Have you discovered a new hobby? What weekly wins can you share this week?

      I am happy that I made it to the lab, finally. I will share more on that next week with my column. I also got in the pool a bit to do water exercises since the weather has been so nice. I enjoyed that and maybe will do it again here this afternoon.

    • #24934
      Colleen Steele
      Keymaster

      @jenc I enjoy this topic at the end of every week. I share your shout out to getting labs completed. Cullen did his last week and it was relief to check those off the to-do-list, especially since he was very late in doing them because of Covid.

      I’ve been watching posts on FB about people opening their pools and starting to enjoy them. I wish we had one. A nice refreshing swim would do wonders. I’m happy for you that you have that option because I’m sure it helps in more ways than one.

      I guess my win this week was finally getting myself to the doctor to have my arm looked at after injuring it back in February. Now if I would just schedule the PT appointments as I was instructed to do.

    • #24941
      Jen Cueva
      Keymaster

      Thanks, @colleensteele. I think to celebrate our small wins each week, no matter how small, can be beneficial. Yes, I was weeks behind on my labs due to COVID. I was happy to finally get back and see that they were practicing all safety measures.

      I am proud of you for making that appointment to have your arm looked at. I am hoping that you can have PT come top your home if you do not have a small PT center near you. Please keep us posted.

      I did enjoy the pool twice this week. I enjoy getting in and doing some exercise, too. Although on Friday, the water temperature was not as warm as it was earlier in the week.

      Does anyone else have any weekly wins for last week? Did y’all get outdoors more, make an appointment, eat better, something small?

    • #25205
      Jen Cueva
      Keymaster

      Let’s hear about your weekly wins. I know for me, I have had a long and busy week, but I did my labs again and sent out some cards to a few friends. I also did some stretching/yoga 2 times this week.

      What about y’all? I know that @colleensteele has some weekly wins. I also saw that @nancy-mcsweeney got her routine down for meds, so that’s a win! Keep it up, and let’s talk about what y’all did to win this week?


      @stephanie
      , how are you doing this week? Your name popped in my head as I was typing.

      I know that everyone has some small win this week. Let’s hear it. Celebrate the little things!

    • #30193
      Randolph Reynolds
      Participant

      Jen and others. I think this is a proper place to mention something that my Palliative Care Counselor and I shared about living with PAH. I have become despondent over the routine, my physical limitations, my mental state and the outside challenges that I face each day.

      The discussion with my Counselor focused on not just wishing for a positive attitude but creating a positive attitude. That is rather difficult but in the past week it has been something that I wanted to put into practice. One way is to be with friends who have accepted that I am limited because of my oxygen requirements. I seem to have lost my sense of humor but just trying to laugh helps. Talking about others issues or doing what retired men do, comparing thoughts on the state of the nation and politics is helpful. It is being alone that the demons haunt me.

      My best friend, my wife, has been trying to recover from knee replacement surgery but a Bakers Cyst developed behind the knee and she isn’t getting the full benefit of therapy. This has set us back a bit.

      In short it is not easy to get out of being despondent yet that is a goal. Some of my physical pain is lessened for a while – infusion site and back problems. That is a blessing. I have to use some medication to dampen my anxiety disorder but diversion helps as well.

      The two doctors that are managing my disease are pleased that I seem to be doing well. I think that is a positive factor. The fact that I will not be able to attend my son’s wedding is a negative factor but that too can pass. Traveling long distances with my support equipment is prohibited. I just plan that my family will be graciously accepting.

      That is my report for this month. There is one scripture verse out of many that is applicable: see Isaiah 26:3

      • #30196
        Colleen Steele
        Keymaster

        @ripple76 you shared the perfect scripture verse to reflect on your recent experience. I can’t thank you enough for openly sharing what you have been going through and how you have been addressing it. Trying to cope alone is often when we fail so hearing that you are reaching out to friends who you feel comfortable around is great to hear. I’m really happy for you that you are doing that.

        I’m sorry to hear that your wife has had a tough recovery and that you will not be able to attend your son’s wedding. Will someone be able to live stream it or record it for you?

    • #30209
      Jen Cueva
      Keymaster

      Hi @ripple76, I am so happy that you decided to post about your struggles. I can certainly relate to the demons that haunt me when alone. This too can take over at times and spital out of control. I am grateful that you have found ways o accentuate the positives.

      Keeping a positive mindset despite our struggles can be challenging. But acknowledging the demons and struggles will help to move past this. Sharing with others and knowing that you are not alone is helpful.

      I am happy to hear you are getting out with others and, as you say, do what retired men do, LOL.

      Hugs and prayers with you and your wife, too, as she recovers. Thanks for sharing, and know that you can share anything here judgment-free.

      Please do let us know how we can best support you.

    • #30350
      Jen Cueva
      Keymaster

      On Friday, I did not make it to the forums; I apologize. Manny took me to the local farm, which I love and have not been to in a long time. It is not too far away, but with the traffic and rain, I was beat.

      But the win is going there and getting some fresh fruits and veggies. I love fresh tomatoes, pickling cucumbers, peaches, red potatoes, and cantaloupe. They also have a bakery with fresh handheld fruit pies, a favorite, and a smokehouse next door. We did not go to the smokehouse this trip. But I was happy to make this trip.

      That was a win, and finally, receiving my meds from Acccredo was the best win for me after working with them for over a week.

      What wins do y’all have for the week? A new week is on the horizon, so keep looking out for those wins, both big and small.

    • #30889
      Colleen Steele
      Keymaster

      @jenc I know your weekly win this week will have been spending time with your daughter. How is that going? Have you been able to do anything special together? Heart to heart conversations over Starbucks count!

      • #30928
        Jen Cueva
        Keymaster

        Yes, @colleensteele, you know that was a huge win for me this week. My daughter was here for most of the week. We had many heart-to-heart conversations. Most often over morning coffee.

        I enjoyed our time immensely. This was our first true visit after my COVID hospitalization. The last time I saw her was at my stepfather’s funeral for a day, and it was chaotic for all. So, we did not count that really.

        I must say, I am drained and crashed hard last night, as I figured. But our special time is always worth it.
        Two months from today, so that is my next count down, hehe.

        Creating new memories is always so much fun with her, no matter what we are doing. I miss her already.

        Anyone else care to share your wins this week? @colleensteele, you making it a priority to catch up on all health-related appointments must be huge for you. Kudos to you!

        • #30932
          Colleen Steele
          Keymaster

          @jenc I was thinking about you every day and smiling because I knew you were having a lovely visit with your daughter. I was going to ask when the next one will be. Two months will fly by…at least it seems like how time has been going lately.

          Yes, checking off appointments one by one. Off to GI in 30 minutes.

    • #30941
      Jen Cueva
      Keymaster

      Thanks, @colleensteele; yes, we enjoyed a lovely visit. You are right, and two months will fly by. The time together is never enough for this mama bear.

      Congrats on that GI and dentist in one week! That is such a huge win! You set an awesome example for us all. Thank you for being you. What are you looking forward to this week?

      Anyone else have any wins to share?

    • #30949
      Colleen Steele
      Keymaster

      @jenc unfortunately Cullen has a couple cavities and is getting them filled today. Aidan gets his 2nd vaccination today. Other than that, just trying to survive the heat this week.

    • #31131
      Jen Cueva
      Keymaster

      Hey y’all, it is that time again. Another week is coming to an end. What are those weekly wins that you can share with us?

      For me, of course, I was returning home from the hospital after a few days. That and the support was shown from you all here and so many of my friends and family members. I am one fortunate young woman.

      What wins did y’all have this week? Big or small? They all count.

    • #31325
      Jen Cueva
      Keymaster

      This weekend, I had a goal to get into the pool. Thanks to my hubby, Manny, who wasn’t feeling his best. He carried my home oxygen concentrator to the patio. It has a long extension to go through the house.

      I moved a bit in the water, which I enjoy. Plus, I floated around on my float with my oxygen. That made it perfect for me to reach the pool. I enjoyed about 20-30 minutes before the clouds and thunder rolled in. I enjoyed some fresh air and vitamin D.

      That was my weekly win. Plus, my hubby is getting back to his usual self. What weekly wins do you have that we can celebrate?

      I bet that @colleensteele will say that she and Aidan are feeling better and can enjoy their trip back to NJ with her folks, family, and friends.

      Any little win that y’all want to share?

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