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How’s your mental health doing this week?
Across the world, many feel overwhelmed in some way. But to add to this mix of chaos, the tasks of managing PH are exhausting physically and mentally. There are so many other factors that are intertwined with PH.
How is your mental health? How can we best support you where you are today? Let’s talk about this and help each other crawl out of whatever situation we are in.
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41 Replies
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Hey, y’all, I wanted to share a brief update from our PHriend, @Dawn.
You may recall she was struggling with her health for most of the year last year. She is now awaiting a knee replacement and is excited about that. She is in a much better place mentally most days. We can all relate to this as if anyone has worked with a therapist; it’s an ongoing work in progress.
Dawn shares, “I’m doing better with getting my mindset turned around. I’m reminding myself when I’m really nasty to myself that I wouldn’t do that to anyone else, so I don’t deserve to be treated that way either. So far it’s made a good difference in my mental/emotional state. Focusing on recognizing all the good things in my life and reminding myself that I’ve gotten through a lot in my life so I can get through this as well.
<b style=”font-style: italic;”>So far the knee replacement is a go. I have a couple more tests that the cardiologist wants done, but the cardiologist’s physician assistant told me during an appointment last week that they don’t actually say yes or no to a surgery but just tell me what the tests show and what their concerns would be. I’m feeling fairly calm about having the knee done, because it is affecting how I get around and my recovery so much. I’ve lived with the pain in that knee for decades, but it’s now to a degree that exhausts me and injections etc. don’t help any longer.
<b style=”font-style: italic;”>So, finally a better update from me! I thank you, Jen, for staying in touch through this very rough period.”Dawn, we are here and continue to cheer you on from the forums. We hope you’ll find time and energy soon to return with us all here. Please keep us posted on the knee replacement schedule and how we can best support you through that and your recovery! I’m so happy that things are looking up for you since you’ve struggled for the past year or longer. Hugs and prayers are with you, my PHriend.
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@Dawn, really good insight. If you wouldn’t behave that way toward someone else, why behave that way toward yourself? Excellent insight. I’ll try to remember this one.
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Yes, I thought so, too, @brenda-denzler. We are usually our own harshest critics. Today, this speaks volumes for me. I needed to read this reminder, so thanks, @Dawn. 🤗
This weekend and the last several weeks, I have been an emotional wreck. IDK if it was partially due to the Medrol dose pack I was on recently still in my system or what. But it’s so not what I am used to, and it’s hurtful and embarrassing when we are frustrated and say things we don’t mean. Words, unfortunately, can’t be taken back, but we need to remind ourselves of forgiveness and show ourselves the same grace as anyone else would.
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Hey, @Dawn, I wanted to check in and see how things are going for you. Have you had your knee replacement surgery yet? What’s new for you? I have had you on my mind and wondered if you’ve had it so you can start the recovery process sooner rather than later.
Extra gentle hugs, prayers, and love are coming your way. 🤗💜
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@Dawn I’ve been thinking of you. How are you doing? Can we support you in some way?
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Just a short note. I have been in this retirement place for four months. My wife is happy here but I’m not and in part that is due to my restrictions of being on supplemental oxygen 24/7. Therefore I cannot participate in ‘special activities’. However, I’m not interested in most of them since these older folks aren’t very sharpe. I am trying to manage my depression that arises from the thought that I am inevitably tied to this place.
One suggestion that I gave my self is to help leverage my mood by using the first three stepts of the 12 step Emotions Anonyomous. It worked years ago when i was in desparate straits. That is my emotional status for this week.
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Hi, @Randolph Reynolds. I can’t imagine how you must feel in that new living situation and not much control over when and where you go. It’s positive news that your lovely wife enjoys the special activities and can access the facilities. It’s heartbreaking when I know how much you have enjoyed time and intellectual chats with others.
Can some of your good friends, who took you to the doctor, etc., come for a visit or take you out for a special occasion, even a coffee chat? It’s easy to see how depression could begin to creep in. But I am happy to hear you recognize that and can leverage your mood by recalling those first three steps. Yes, he is in control and know you are cared for and supported here, too, my PHriend.
Extra gentle hugs, give yourself a little grace, and know that when you feel depression creeping in trying and refocus iusing those three steps you mention.🤗🙏 Thanks for the brief update, Randy.
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Hey, y’all, it’s the end of another week. It seems there are so many things going on in the world, and it’s not unusual that many of us experience mental health like anxiety and depression. For me, I’ve found my anxiety increasing more as we have had wildfires and crazy temperatures around our area.
On Tuesday, my therapy session was good. She said it’s expected during the busy season we are currently in. The positive is that I am aware of it and try to find ways to cope, like being outdoors when the smoke is now in the air, doing some light exercises, and watching fun videos and movies.
How is your mental health doing this week? What things do you find helpful? Let’s talk about this!
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Good Sunday morning @jen-cueva Yesterday I realized I have been quite down. Sometimes it all catches up to me – all the medical issues, all the unresolved, Dick’s unresolved medical issues and one big issue – I am 80 and Dick 85 about to be 86 and we just are unable to do things we are so use to doing automatically. And here we have our 2 year old sweet Golden and having to plan in our wills where he would need to go if we were unable to care for him and we have to plan who he would be rehomed.
All of this is a reality and knowing it really won’t get better but we have to deal with that. I’ll pulled it together – I have to. So … I am allowing myself to be down a bit and turn around and be greatful for how we are and we (all 3 of us) are together ❤️.
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Hi @carol-volckmann , I’m deeply sorry and saddened to hear about your situation, my dear PHriend. It’s okay to feel down sometimes as long as we don’t dwell there. We should allow ourselves to experience these emotions, even though it can feel overwhelming and scary, especially as we get older and progress with PH and other coexisting conditions.
Please remember that you’re not alone in this. Dealing with our reality and managing our symptoms can be draining and frustrating. It’s not easy, especially when we don’t have all the answers we need. Making decisions like who would care for Mr. Cloud, even though they may be difficult, is crucial at any age, especially when dealing with conditions like PH and other medical issues.
Know that you are loved and supported. 🤗Take the time to process your emotions, whether by having a good cry or writing in a journal. Sharing your feelings with others who understand, like here in the forums, can provide a supportive space to express yourself when things become overwhelming.💜
I’m sending you extra gentle hugs, love, peace, and prayers sweet PHriend.
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@carol-volckmann I’m sorry to hear you have been feeling down but it made me happy to hear you say, “I am allowing myself to be down…”. I think that is an important part of self-care. When we don’t open the door to our emotions it puts us at risk of depression to come crashing through.
You are in a new season of your life. I pray for sunshine ahead but find it wise that you are preparing for other weather. It’s not an easy process but you will feel a sense of relief when you plan for the “what if’s”. Since my husband passed, I have been doing much of the same. My heart, as always, goes out to you and Dick.
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@jen-cueva Jen,thank you sweet and thoughtful friend. You are always there to reach out when so much is going on with your life’s issues. I admire you so for your kindness, wisdom and love ❤️!!
Everything just hit me at once it also hit Dick at the same time. Usually just one of us will at times get really down but t h e other one is there with the love and support to get us through before either one can dwell on it.
So … we gave each other permission to be down and with the promise we would wake the next morning and be out of the hole. We both have serious issues to deal with and we know that – we will deal with them and come out the other side.
Right now we are taking Mr Cloud for his walk, run and play – he always makes us laugh out loud!
Thank you Jen for your support, hugs and love ❤️ you are truly a gift 🎁 💖
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Hi @carol-volckmann , you are so kind and also supportive, my PHriend!
I can relate to you both feeling that darker season simultaneously. As you share, Manny and I usually go through these seasons at different times. This way we can help one another. However, a few times, it’s been simultaneously, and still, we talk about it and allow ourselves tio be frustrated and sad.
I’m so very thankful that you and Dick, too, find communicating, even in your most challenging times. You know so well how very critical managing PH is.
It was good for you both to allow yourselves to feel those emotions first before going to bed and agreeing that the next day was a fresh start. I’m proud of you both for that self-care mindset!
Aww, Mr. Cloud brings so much laughter and joy to you both, that’s incredible. 🐶
My heart, love, and prayers are with you three, my sweet PHriend. And just as you shared this, we will continue to support one another here in the forums, as all of you do so well. 💜🤗
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@Colleen Colleen, your words of support are so on target – they are wise, thoughtful, realistic and you touch my heart ❤️.
Deep down I know, you and Jen know, no matter what is tossed your way, we will have the strength to get through the storms. We may not be able to change the weather, but we will do our very best to prepare for it and deal with it.
Thank you dear friend, you have made me smile and be thankful for what I have.
Sending you always warm hugs 🤗 filled with love ❤️.
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Yes, ma’am, you know it, @carol-volckmann . Together, we all weather whatever storms come our way. Some storms come in a little stronger than others.
I have a bangle bracelet Brittany gave me several years ago; inside, it says, I AM the storm! Now, I also bought a warm and cozy sweatshirt, and on the sleeves, it says, Stronger than the storm. I’ll see if it lets me post that picture here so you all can see it. I wore it last week, already!
Your heartfelt words to me and @Colleen touched my heart and brought a big smile to my face. ☺
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Hey @Col , @Aunt Lizzie , @V.R. Peterson , @brenda-denzler , @Carol alexander , @Jimi Mcintosh , @Terry , @DeLois Tweedy , @Carm , @Tess , @Kat , @Sara , and @Nance , how are y’all doing this week, mentally?
I know I tagged many of you, but of course, I can’t tag everyone. As always, we are here to provide the best support for all of you!🤗
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Feeling kinda defeated by life in general.
But friends arriving tonight for a 4-day stay, and that is something positive that I’m looking forward to. 🙂
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@brenda-denzler I hope they are the kind of friends who will change your feelings of defeat into, “You’ve got this! Keep fighting!” Enjoy your get-together and hopefully you will be posting later next week that you are back in the game. We care about you!
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Oh no, @brenda-denzler , I’m sorry you’ve been feeling so defeated with all you have on your plate and in present times. Big hugs and extra love are coming your way, my sweet PHriend!
I hope this group of friends will bring along some laughter, joy, and a positive mindset. (Ice cream and good food would help, too)😋
And let’s not forget the number of times you’ve felt defeated and pushed through because you can do it, too!
Since this was in my queue last week, I forgot to hit “post”(LOL). How are you feeling this week? Did your friends help you get through this feeling of defeat? How can we best support you?🤗
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Love your sweatshirt @jen-cueva Stronger than the storm! We all have to be – look for that rainbow 🌈, it is there within all of us
Thank you Jen and @Colleen for all your support and thoughtfulness. It really does warm my ❤️.
I now have been on the lactose free diet which has not made any difference. I will start on the antibiotic Xifaxan and soon as it gets here from Canada. Even with my Drug Plan the cost is over $210. for only 12 tablets – Ouch!! If anything is going to work on SIBO this should, fingers crossed 🤞
Warm hugs and positive energy 🤗 ✨️ 💖
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Hi @carol-volckmann , you are so kind, my sweet PHriend!
You know, looking for rainbows is something I’ve always done as a child. Sunshine was always my favorite. When it rained, I looked for those rainbows. Now, I continue that practice. 🌈
When KK was little and still today with her and others, I always tell them to carry a bit of sunshine wherever they go. That’s true of our incredible forum members like you! You all bring a bit of sunshine to all you connect with. 🌞
I am crossing all I can and praying that this expensive antibiotic will do the trick against SIBO! As always, I am sending gentle hugs, positive thoughts, and vibes your way!🤗 Is that only a short-term antibiotic, or would it be prophylaxis, like daily?
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Hello @jen-cueva thank you so much for your thoughtfulness – you always seem to just what will make me smile 😊.
Xifaxan is the antibiotic that I will take 3 tablets a day for 2 weeks, two weeks off and ifcI still have no relief I am to repeat.
It is coming from a Canadian Pharmacy which is getting from India. I won’t have it for another 5 weeks! It is worth it here it would cost $2000.00, Canada would be $700.00 and India $200 and … it is the exactly the same meds – so tell me what is wrong with this picture?!!!
This week is my 3rd week on lactose free diet – absolutely has not made and difference. I’ll stay on it for the full 3 weeks then back to my ice cream, mashed potatoes and regular milk – maybe in that order 😋!
I hope you had a special weekend and will have a good week ahead. I m sending you 🌈 🌈 and sunny days to warm your heart ❤️. Much love ❤️
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Hi @carol-volckmann, thank you, my sweet PHriend. I feel you do the same for me when needed. It’s what PHriends do, so we support each other and do what we can to help them.
Ekkk- that’s insane. That is what I say about the varied costs of the Xifaxan! Yep, there is a huge problem here with this, and we need to work hard to improve for all of us in the US! When I hear this type of scenario, it’s frustrating. When I think of the best thing I or we can do about this is to let our congress reps know how very crucial things like this are to not only those of us with rare diseases but all citizens fighting any health scare and needing these medications.
I’ll leave it at that before I start writing too much about it. When I address this topic in a column, I may ask for your feedback if that’s OK with you. I’m not writing weekly now; I decided to take a pause and write every two weeks for some time. That was part of my self-care and recognition that I was pushing myself too hard the last several months.
I LOVE your plan to introduce low-lactose items to your diet. Ice cream is perfect. 🍨Do you happen to have a favorite flavor?
My weekend was great! Friday evening, we planned to attend a music event at the beach, which was so nice at the end of a busy few weeks. The rest of the weekend was my recharge time, LOL.
But there was sunshine and nice weather all weekend. Although yesterday it reached 80 again through tomorrow, I have no complaints, although I’ll try to wait to do my fall festival activities when it’s a tad cooler, LOL.
Keep on searching for those rainbows, and don’t forget the rainbows! You could add some rainbow sprinkles to your next ice cream. 😋🌈
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Hi y’all, If I repeat myself here on something I’ve already shared its because of old age . My goodness ,you know, forgetfulness as a result of old age can be a blessing sometimes. Like when the boss brought up the time I made a total fool of myself showing the daughters how to handle a cantankerous pony. My response , ‘Na can’t remember’ or the time at a ballroom dance when the attractive female …….. , well you get the gist. Ha. anyway last month had a stent put in the RH coronary artery so now have one on each side . Since then am half way through rehab and feeling pretty damn good . Before the stent my pressure had gone up from forty something to fifty four so it will be interesting on what it has done since. I don’t know if it is the stent or the extra blood thinners I am now on but I feel great , Have I already said that ?
Right now my primary aim is to outlive my father in law who turned 100 in june and keeps telling everybody what a great bloke he is/was god bless him . He has forgetfulness me thinks. ha.
Aside from sailing , housework etc. my sit at home hobby is restoring mechanical watches . I have lots of watches as I never sell any although I give them to family if they want them . The boss gets a bit sick of me crawling around looking for a spring half the size of an eyelash when I forget to use the correct tweezers so have decided to turn my many talents to restoring a couple of old sextants. Ha . I looked up alibaba for an artificial sextant horizon and when I typed in sextant it asked if I was over 18 .WHAT! You can guess what toys it came up with. So mentally I am great just wish I could remember what the subject was again.
Hell I love living ,be happy and G’Day 🤠
Ps did I get Y’all right or is it Ya’ll
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@Terry if you repeat something it means you still want/need to talk about it and we will always be here to listen and revisit a topic.
GREAT to hear how much the stent is helping! Wow, your father-in-law has my dad beat! He turned 94 in August.
It sounds like you found a perfect hobby! It’s unique and I love that!
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Hey @Terry , yes Mate, you got y’all, correct, hehe. 😃
It’s fantastic news that your second stent is helping, and you are feeling much better. Now, regarding that selective memory, is it like the selective hearing my hubby often has? 😉
But great news, and I can only imagine and hope this will help your pressures come back down.
Wow, you must have a great set of eyes, Mate. Do you use a craft magnifying light to work on the watches? That’s so cool, and what treasures for the family to have something you’ve restored. Have you already been sailing post-stent placement, Mate?
How’s your lovely wife? I bet she keeps that “honey-do” list going so you do those home chores nonstop.
Wow, 100 years old, your dear FIL must be a delight! And yes, you need to keep pushing or, shall I say, “sailing” the winds of PH.
Take care, Mate, and thanks for the wonderful update.
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Good afternoon @jen-cueva You can always count on my feedback whenever you think it would be helpful. I am so proud FOR you taking care of yourself and knowing keeping the pace you were keeping was not healthy emotionally as well as physically.<div>
You weekend as sounds perfect …. concert on the beach ⛱️ sunshine 🌞 and hanging out. I loved that you said you were recharging. When I was counseling or doing workshops often people would talk about they needed ‘down’ time. I suggested rather than down time which to me sounded negative, I liked to say I needed to recharge.
Well, I have been on the lactose free diet 😝 nearly 3 weeks – has made zero difference in my SIBO. I think 3 weeks is enough time – I will ask old Bushyhead (actually he is quite young). I cannot wait for my ice cream 🍦🍨🍧🍦. We usually have ice cream on the weekends. I love really strong coffee ice cream or really creamy vanilla with Dick’s homemade chocolate sauce 😋. I never have gone into all the fancy ice cream flavors just good coffee or vanilla 😋 😊.
Thank you for checking in sweet friend – you are so thoughtful and caring – we can always find a rainbow 🌈 ❤️ sending hugs and positive energy.
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Hi @carol-volckmann , you are always so helpful, my PHriend!
I appreciate your support as I take a break and reduce my writing. You’re right; pushing ourselves too hard mentally and physically can be draining.
The beach concert, with my toes in the sand and a nice cold adult beverage in my hand, was incredible. I’ve always enjoyed live music—well, most music. Add to that my happy place with my hubby, and it was well worth it. I prefer recharging, just like I recharge my POC batteries to stay active. I’ve also started using that approach to take care of my body.🔋
I hope Dr. Bushyhead gives you the green light to enjoy your ice cream this weekend.🍦 It’s funny; Manny loves coffee ice cream. I prefer mint or vanilla with caramel. Oh my, Dick’s homemade chocolate sauce sounds excellent! 😋 Can I get his recipe from you two? It would be delicious in most ice cream flavors that I enjoy.
Until then, we enjoy the sunshine and look for the rainbows as needed.🌈
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Hey @Terry hitting 80 and not remembering stuff can be a blessing sometimes – you’re right! Hiw about you forgot what the show/movie was about so you get to b watch it all over again and enjoy 😉.
Really super glad you are recovering well and feeling so much better – so great to hear. Now you’re sort of balanced – a stint on both sides!
Keep feeling better and keep that sense of humor. Sending you well wishes, positive energy ✨️ and prayers 🙏.
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LOL, @carol-volckmann , I’m not yet 80, but I can relate to rewatching movies. Sometimes, I watch a movie without realizing I’ve seen it before. Manny usually reminds me, and I always comment, “Oh, I must have fallen asleep on you during that one.”
I blame low O2, LOL.
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Our mental health is as important as our physical. How is everyone doing?
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Hi @Colleen , well said! So, as you care for your family, how’s your mental health this week? I can’t begin to imagine with all you have to balance, my friend.
This year, I’ve been a bit more anxious than usual and overwhelmed on most days. But I’m learning to take breaks outdoors if possible and talk with my therapist and friends/family. Mental health also needs that rest, so when we are overdoing it, our physical and mental health takes a hit.
How can we best support you this week?-
@jen-cueva I’m sorry to hear you have been feeling more anxious. Anything new going on or just a mix of a lot of things weighing on you?
My mental health could be doing better. I’ve been feeling like I’m losing a sense of self lately. Church on Sunday morning and daily snuggles with my cat are what’s keeping me going these days.
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Hey @Colleen , I’m grateful you make it to church on Sundays, and I bet your cat is all warm and cuddly. However, I know you could use a break. Extra gentle hugs and prayers continue to be with you and your family.
With my anxiety, it’s been a mixture of elements, but reminding myself I can’t control most and need to give it to God. Not as easy as it sounds, I know. Thanks for asking, but mine will work out eventually; I’m just impatient. I am a woman, LOL.
Hopefully this week will bring some calmness to your life, my dear friend.
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@jen-cueva I worry about you and hope you will reach out to the forums for support whenever you need it because we want to be here for you as much as you are for us. How is your week going so far?
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Hi @Colleen , you are so kind, my friend. I do find a ton of support here from you and our loving members.
This week is going better so far, so I’ll take it! I hope your week is , too, my dear friend.🤗
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2024 ended with way too many crises for my liking, among them the divorce of a loved one and two deaths in the family. 2025 is much calmer, and I’m hoping the calm holds steady. In any case, I’m finally breathing easier and no longer wondering if another shoe will drop.
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Hi, @V.R. Peterson Oh no! I’m so sorry to hear your family experienced loss in the latter part of 2024. It’s nice to hear you feel this year is offering you some calm against last year’s storms. You know, when someone in our family divorces, it’s often like a loss, especially if it is someone we are close to.
Yes, breathe and enjoy all the peace and calmness this year. What else besides time would you say has helped you get to this little calm?
Extra gentle hugs and love are coming your way, my PHriend!🤗
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@V.R. Peterson I am so sorry to hear about all the loss your family endured as 2024 was coming to a close. I certainly hope 2025 continues to be kinder. Remember, we will always be here for you through the ups and downs! How is your son doing?
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Thank you Colleen and Jen. So far, except for an illness that has resolved, 2025 is calm.
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Oh, yay- I love the “all is calm” season you are in currently, @V.R. Peterson ! I hope and pray you continue to have a much calmer year! Big hugs and extra love coming your way!🤗
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