What’s on Your Mind, PHriends?

[Colleen]

Not surprising that you bring up such a caring topic @jenc.

The holiday isn’t jolly for everyone. Many are going through loss or other heartache – like recently being diagnosed with PH, and it can make the season feel bittersweet. Please, if you are struggling to get through the holiday’s, speak-up here. Let us know what you are going through. Sometimes just letting the hurt out can help and you know we will give you nothing but kindness here.

My parents are on my mind this Christmas. I returned yesterday from a 2 week visit with them and I have concerns. I wish it were possible for me to move out there or convince them to move in with us in WA. They need assistance at this point but won’t accept that they do.

On another note, how does Christmas music make you feel? I personally love it melancholy tunes. But my mom won’t listen to Christmas music and has never been drawn to it. She says Christmas music makes her feel sad. Can anyone else relate?

[jen-cueva]

Aww, @colleensteele, my heart aches for you as I know it’s difficult leaving your parents after being there and helping them a few weeks. Knowing they need additional help that you can’t do long-distance is tough. Hopefully, soon, they may decide to move to WA or something to get some assistance. My thoughts and prayers are with you and them, too.

I love most Christmas music. Like you, I tend to listen to it even while at home working. At first, I thought maybe the Christmas music made her sad because she thought of the old days when you were small. But knowing she has never enjoyed it, it is new for me. I don’t think I have ever had anyone dislike it. What would you think is her reason? I know some of the long-drawn-out versions be can nerve-wracking at times., but I enjoy most Christmas tunes.

[Dawn]

Hi Jen & Colleen.  I appreciate you thinking of me Jen, but I won’t be alone for the holidays. I’m very blessed to have my brother and sister who both live close by. We’ve all had both covid shots and boosters, so at least for now we’re still planning on being together for some of Christmas day.  We’ll see what the local nbrs look like as we get closer in case we need to change our plans.  I send thoughts and prayers to all who have lost loved ones, or are facing the holidays alone.

Colleen, I love Christmas music!  It always brings back wonderful memories of growing up, and my mother loved music and encouraged us to as well.  Some songs, I’ll agree with your mom, can bring up sad feelings/memories, but I think sometimes it’s good to let ourselves feel those feelings and see that we can get through them.  If your parents would be open to the idea, we used one of those ‘home instead’ services for my mom when she became less able to do certain things and she felt more comfortable having someone around when we ‘kids’ couldn’t be there.  We were very careful in who we interviewed, but it made both my mom and my brother, sister, and I less worried when we couldn’t be there for around the clock shifts.

I hope you both are doing well, and enjoy your holidays.  Thank you both for checking in and the encouragement during my recent lack of posting.  I’m doing much better, and hope to be doing more regular posting. It was tough admitting that my depression had gotten ahead of me again, but I feel like I’m moving in the right direction again. It’s been a great relief!

[jen-cueva]

Hi @dawnt, I am so happy that your brother and sister are near. My apologies; I believe that you have mentioned that before. Do you have any traditions that you are looking forward to?

I also love music, almost all genres, too. I often play music via Alexa while doing things around the house. My mom blasted the music on Saturday mornings while we cleaned the house. Maybe that’s where I got that from, LOL.

Depression has to be challenging to stay on top of. I am incredibly proud of you for knowing when you have headed in that direction and getting help. Knowing these things and reaching out is the best for you. Thank you for sharing your update, Dawn. I hope you and your siblings have a happy and safe holiday season.

[Colleen]

@dawnt it sounds like you are doing better and it makes my heart happy to hear! I’m going to at least research the “home instead” services. I would put it into motion now except my mom keeps stressing, “Don’t you dare arrange for anyone to check-in on us – we are fine!”. Well, I beg to differ. It’s a struggle finding ways to help them and maintain respect for their wishes.

But, on a brighter note, we are all healthy this Christmas and I’m grateful for special time spent together. Enjoy your precious family too! Merry Christmas!

[Valerie]

Hello everyone!
Christmas music is great. But it’s best if it’s not much. And it’s better if it sounds on a holiday! When decorated fir trees appear in mid-November, I don’t really like it. No one can keep a festive mood for so long!
I don’t really like holidays, I like the anticipation of the holiday more. I know a lot of people (not PH patients or anything else) who don’t like holidays. They just go to bed. I think it’s very sad. But it’s not sad, but comfortable for them.
And I really like the idea of “Secret Santa”. Of course, here on the forum, we can’t give each other gifts like that. But we can at least write here. Even in this topic! The main thing is that anyone who suddenly feels lonely should come here. Jen, Colleen, you do so much here. Your topics are always friendly. A person can just go to the forum and feel support and relief. Thank you!
I hope that very soon there will be those participants who have disappeared from sight. No one should be alone.

[jen-cueva]

Hi @valeriekv, I am so happy to see your post. How are you doing?

Like you, I agree if we start playing Christmas music in October, as many do, it gets old fast. I enjoy listing to it but the last few weeks in December is enough for me. Like anything, if overplayed, it gets old.

It does sadden me when I hear of those who hate the holidays. I have a few people that I know like that. But this is their choice, and they enjoy it.

I saw many people homebound and alone during the holidays working in nursing. I would bring them extra goodies and often a gift to open on Christmas.

Secret Santa is always fun with a group. We often did Secret Santa when I worked at most places I worked. Today the local PH group had a $10 gift exchange and luncheon. But I chose not to go because of Omnicron.

Do you do this with anyone, Valerie? One year my older sister called it “Dirty” Santa instead of Secret Santa. She couldn’t seem to remember the name, LOL.

Thank you for such kind words. The forum members are like an extended PHamily for me. I think of y’all and worry about everyone often. I know that I speak for Colleen, too.

I wish you and everyone here a safe, happy, and healthy holiday season. We have so much to celebrate. Thanks so much for checking in.

[Valerie]

Jen, hello and thank you!
I’m tired and just hope to rest in the next few days. My ultrasound doctor invites me to come for a checkup (I haven’t been to his office for almost 2 years). I’ll do it in a month or two, because it’s very cold right now.
I have never participated in the “Secret Santa”, it is not popular with us. Your sister said it very funny ????
It’s great that you’re making gifts! I think it will be nice for some people to even get a smile. I hope that something pleasant will happen to all forum participants during these upcoming holidays! ????

[Colleen]

@valeriekv “Secret Santa” can be fun to participate in. Some people get very clever with the gifts. Enjoy your rest and whatever will bring you peace and joy in your heart this holiday.

[jen-cueva]

Hi @valeriekv, enjoy some rest during this holiday season. May you find some peace and joy while relaxing.

I’m happy that my sister’s name of Secret Santa gave ya a laugh. Please take care of yourself and `know we are here for support anytime.

[Kathleen Grady]

This holiday is going to be small this year. I have been recovering from Covid, and have an infection in my line. Apparently the plastic is infected 🙁 so it has to come out. I was in the hospital for a week and it cleared up and as soon as I got home the infection came back.  I am having it replaced on the 27th. I know so many people have them replaced many times, but I actually have my original line from 11 years ago, so I am not looking forward to it.

[Colleen]

@kgrady69 I’m so sorry to hear that you are dealing with Covid and line infection this Christmas. My son had a few lines replaced and they were both due to the line itself and not a skin or blood infection. For him it was due to line breaks. The line replacement went well every time and I’m praying it does for you too. The most important thing is they figured out the problem and are quickly addressing it. I will be thinking of you on the 27th. Hopefully the new year will be kind to you!

[jen-cueva]

Oh no, @kgrady69, I’m so sorry to hear that now you have a line infection that landed you in the hospital. But grateful that you are home now and resting.

I can understand how this complicated your post-COVID recovery. I’m sending you warm hugs and well wishes as you celebrate the holidays and ring in the new year ahead. Take care of yourself.

[Randolph Reynolds]

Christmas Greetings from a brother PHA sufferer.  I find this Christmas is without the uplift of past years mostly because my wife has to use a wheelchair until a small fracture in her pelvis heals.  The burden on me has previously be just to take care of me. Now, with help from friends, I take on duties I am not as fit to do as I used to be.

Music is at the heart of celebrating this time of year and this is the first year in our married life that my wife, a musician, has not been able to participate.

It grieves me to read about other members of these forums that are suffering.  Christmas can be a downer for those who are physically restricted.  When our children were much younger Christmas was all about them and our events in church.  As time passes that ‘mystic’ sense fades.  It doesn’t mean that Christmas has faded it means to me that the season is a time to look to hope.  So for everyone who has had to ‘downsize’ this season for whatever reason I send you greetings of joy.

[Colleen]

@ripple76 Merry Christmas and thank you for your kind wishes for the PHamily. I recently watched “A Boy Called Christmas” on Netflix. It’s a very unique take on Santa and Christmas but what comes out of it is such a nice message. Love and simplicity can go a long way in bringing Joy to yourself and others.

I hope and pray that all of you find that one thing this Christmas that will fill your heart with joy – Christmas cards, pretty lights, a special phone call, perhaps a memory.

[jen-cueva]

Merry Christmas to you and your wife, @ripple76. I’m sure this year is not the same for you both without your music. Have you been playing some on the radio or TV?

Christmas is a bit different when our kids are small. But as you mention, we continue to find hope. For me, Christmas can be different but I think back and recall the true meaning of Christmas. I’m grateful for each new year.

You are thoughtful with your wishes and support for the PHamily here in the forums while struggling yourself. May you find some joy and peace in the holiday season.

[Sally Hoffman]

Wishing you all whatever makes you happy for the holidays.

Having a bittersweet day as it is my youngest grandson’s 2nd birthday, and I still have not gotten to meet him!    We had four trips planned to visit in Italy in 2020.  Obviously that never happened.  Thank goodness for technology.  At least we have gotten to watch him grow.  Still hoping (but no longer with high hopes) that they will be able to attend one of my daughters’ wedding in the spring.

As far as Covid is concerned, I will speak with the Pulmonologist tomorrow.  I am considering going into lockdown again.  While I am fully vaccinated and boostered, I am almost 4months after my booster.  With my compromised immune system I don’t know what is next.  I’m glad to hear your governor has issued a mask mandate.  That will never happen in this state.  Our governor is a……….. pick your own word.

Best wishes to all.

 

[Colleen]

@mainegal if you told us previously I am sorry that I didn’t remember that you have a son or daughter and grandchild in Italy. I’m so sorry that Covid has taken such important plans away from you. Thank God for technology or we would have lost so much more over these past few years. Where will your daughter’s wedding be held in the Spring? I’ll keep hoping and praying that you get to attend.

I think with most things in life, especially in regard to the pandemic, the person who will best take care of you – is you! Go with your gut and protect yourself however you feel the need.

Happy Holiday! I do wish you the best!

[Sally Hoffman]

Colleen, Thank you so much for the kind thoughts and words.  My daughter’s wedding will be out on Long Island, in New York in April.  It is one of the most beautiful months of the year on LI.  I grew up there.  Plans are that the Italy family and the California family will all attend.  I’m keeping my fingers crossed we can all be together, if only for a day.

I have my PFTs and 6 min walk tomorrow,  Then two days after Christmas is my Echo and on the 30th my follow up with the new Pulomonologist.  A little nervous about a new doc, but could also be a good new adventure.

Best to all.

[jen-cueva]

Oh no, @mainegal, I’m so sorry to hear that COVID continues to ruin such important plans for you and your family. Technology certainly does make a difference; I know it has offered many the opportunity to celebrate these special milestones with family from a distance.

I hope and pray that you can make your daughter’s wedding in LI in the spring. It sounds like such a beautiful wedding spot, too.

Good luck with your 6MW, Echo, PFTs, and pulmonary appointment not. I’ll say a special prayer that all goes well with the new pulmonologist. Please keep us posted.

May you find some joy and peace this holiday season, which I can bet will involve technology. Take care, Sally.

[Colleen]

@mainegal change is hard, especially when it is in regard to your health. I will be keeping you in my thoughts and hope you make a good connection with the new doctor. I’ll be anxious to hear how it goes.

I will be praying that you get to attend the Long Island wedding. It sounds like a Hallmark movie…going back to where you grew up to attend a beautiful wedding surrounded by loved ones you haven’t seen in a while. Big cyber hugs to you because I know how hard it is to want to make plans for something important like the wedding but have to wait it out to see whether it is something you can really do or not.

I hope the 6 minute walk went well today. Have a peaceful holiday and best of luck on the 30th.

[Colleen]

@mainegal good luck with your new patient appointment with the pulmonologist tomorrow. I’m sure it will go well. Update us when you feel up to it.

[Tracey]

I won’t be alone all Christmas @jenc.  I’ll be alone on Christmas Eve when ny sister and her family go to the yearly Christmas Carol’s that are held in the main street and then they are going out to eat. I’ve chosen not to go with them for a number of reasons, the fact that I don’t really want to spend an evening out with them being the obvious but also all the locals will turn out and every tourist that is in town, and I don’t want to risk getting exposed to Covid. Our numbers are too high and Omicron too transmissable to take a chance. This and the fact that I’m so fatigued I doubt if I’d make it past Jingle Bells, tho one of the ladies in town pounds the carols out on her piano accordion every year so it probably would be difficult to nod off. Some of the youngsters will pop past after Carol’s but I’ll be very happy at home. Christmas day my sister and her lot will be here (oh joy,) and I’ll be making my famous gammon and a slow roasted leg of lamb with garlic in beer. Well actually I’ll be giving the instructions and my sister step-kids will carry them out. The only thing I am looking forward to this year is the food. I had my kiddos with me last Christmas and it was wonderful but they can’t make it home this year. I’m missing them awfully, as I am Abby, Meg and my mom. But I do have Billy and Enzo to heap love on – is it wrong that the only gifts Ive bought this year are for them ????????????‍????

@colleensteele my mother loathed Christmas Carol’s. Wed go into shopping malls from mid October and all she would do was moan about the music. When she moved in with me I’d sometimes change her mobile ring tone to Jingle Bells or just play christmassy music around the house. She secretly enjoyed it ….I hope ????. It truly is tough when your parents can no longer look after themselves and just won’t accept help. My mom had Parkinsons and no matter how I begged would not accept help. It took her falling and breaking her hip to get her to face reality. That and she ran out of money so didn’t have much choice but to move in with me ????. My mom and I were very close and really enjoyed each other’s company, but she was miserable for a good long while feeling like she’d been displaced. But I moved some of her furniture and painting and ornaments in, and moved some of mine out and she felt much better with some of her own stuff around. I think that you’re probably in an even tougher situation because your mom and dad have each other and probably feel like the can conquer the world. It’s difficult when we have to become their parents, but I think in their own interest you might want to look at a way to get someone to look in on them for a couple hours every day.

Merry Christmas ???? ???? everyone. I hope you all enjoy it in your own way.

[Colleen]

@traceyaustralianmigration-co-za it made me so happy to read an update from you!

I hope I’m not way off base saying this, but maybe you will enjoy the house to yourself on Christmas Eve? Do you have a tree up? Maybe relax by the tree, watch some Christmas movies and snuggle with your pets? I think that sounds nice if you are able to do it.

I’m glad to hear you aren’t going to try and make the Christmas dinner all yourself. It all sounds delicious and definitely something to look forward to. I hope you will be able to enjoy the company without too much chaos. Just don’t let anyone talk you into doing more than you can handle.

I think my mom enjoys Christmas music more than she cares to admit. I know there are certain songs that make her teary eyed but there are plenty she loves singing along with, and she has a gorgeous singing voice. While I was out there we went to the Jersey shore for an evening and on the way back on put Christmas music on the radio. Cullen was in the back seat with my mom and they were singing along and she sounded happy – not sad.

Merry Christmas! Don’t be a stranger in the new year. We like hearing from you!

…almost forgot to mention, I realized tonight that I have to go out shopping again for more stocking gifts for Brian and the boys. I um, well…the pets have more stocking gifts then they do! LOL!

[Roger Bliss]

Want to wish everyone a Merry Christmas. I hope Santa brings you everything you asked for.

We were going to spend Christmas with the kids/grand kids near Bend, OR. I agree Christmas is for the kids…..not that big a deal for the wife and I. Been watching the weather and road conditions and it’s supposed to snow/rain for most of the week. The roads are already crap……ice snow. We decided to stay here in AZ and celebrate Christmas with friends. Usually bad roads don’t stop us as we drive on mostly snow covered roads coming down from Alaska every year. However, I doubt the folks in CA and OR have much experience driving in these conditions. Don’t want to get tangled up with them.

We are spending New Year’s with friends in Yuma, then have dentist appointments in Algodones, Mexico on the 3rd. We are headed to SanDiego on the 4th. I am going to get a tube in my lung on the 5th. Going to be busy for a while.

[Colleen]

Merry Christmas to you and yours @wheeldog! As my dad always warned me – it’s the other drivers you have to worry about. I’m sure your kids/grandkids will miss you both but also want you safe. Enjoy the holiday with friends and best of luck with the upcoming appointments, especially on the 5th!

[Debbie Moore]

Merry Christmas to all!  My cousins have come to spend Christmas with us this year.  They arrived last Saturday and will leave the day after Christmas.  I always enjoy their company.  They will do anything to help me which is a blessing.

I love Christmas music and the Christmas tree.  When I first wake up, I go straight to the tree (well first, I take medicine) and turn on the lights.  I just sit and just look at the tree.  With all the other lights off in the house, it lights up the room.  It brings to my mind that Jesus is the light of the world.   Instead of hearing Christmas carols in my head like O Christmas Tree, I hear “He’s the Light – boom, boom – he’s the light of the world”  that’s the only part of the song I remember, but that’s what I take out of it.  Add a cup of coffee, and I think I could sit there forever.

I have Alexa playing Christmas music pretty loud so I can hear it in whatever room I’m in.  The car stations are all programmed to Christmas carols.  The only problem I have found with the music is that I can’t sing a whole song with out having to stop and catch my breath.  After several songs, I can’t seem to even get  the words out, so I hum.

I also try to do as many Christmas activities as I can to enjoy the season before it is over.  I’ve made fruit baskets for the elderly, attended a Christmas play, went to a Christmas party and have watched as many sappy Hallmark Christmas Movies as I can.

This has been a good Christmas.

 

 

[jen-cueva]

Hi @debbie, this sounds like such a fantastic way to start your Christmas morning. You share such a. beautiful tradition, and I can see those twinkling lights as I hear that tune.

After a busy week with your cousins celebrating Christmas, you are now resting and reflecting. There’s no better time to rest than after such a memorable few days with our loved ones.

Like you, I love most music, but I do find that listening more than singing along has become my new normal.

You mention making a fruit basket for the elderly. This makes my heart smile in many ways. Working in nursing, the elderly will always hold a special place in my heart.

Rest up, dear PHriend. Are you relaxing and recovering as you ring in the new year? Take care of yourself.

[Sue Collin]

Hi all – Sue here, Merry XMAS and happy holidays to all! What a delghtful post of a question Jen. Yes, there are surely some difficult parts to all of our lives, myself included, also with aging and ill parents that cause great worry. But, I see either celebrations in the replies, or at least a place for us to share what is on our mind during a time that is ‘supposed’ to be wonderful.
For me, while I celebrate Chanukah that has passed, I LOVE Christmas music and the lights on houses. It gives me another reason to experience joy when it can be easy sometimes for me to focus on the worry list, as I call it. But, I am celebrating getting my PAH hubby on Medicare for next year, getting a bit of an income boost by taking him off of my work insurance, starting a new gig within my company in Jan, and being relatively healthy myself despite my own rare skin disease and its complications. One more celebration: last week, I forgot my cane at home so I walked around the mall w/o it. Tiring, but I did it.
Finally, I so agree w/ @Valerie that the gift we give to one another is participating in this great forum. Thank you Jen, Colleen, and everyone – I wish you all a peaceful Christmas eve and day, no matter what you are doing. Best, Sue

[jen-cueva]

Wow, @scollin, I am so excited for each of these celebrations that you mention. With yourself living with your rare skin condition and your hubby with PH, there are so many things to balance, I’m sure. But you sound like a true pro; any help you can get is a plus.

Congrats on your new position!

I’m amazed that you mention one of your accomplishments, walking the mall without your cane. That is like a marathon, especially this time of year.

But, with these joys, there can also be worry and sadness, as you mention. I, living in other states as my aging parents, can relate, and while I worry, I am grateful that I could talk to them on the phone this holiday season. Each new year is a gift with them, no matter the distance.

Wishing you a Happy New Year and looking forward to hearing more about these celebrations as we begin 2022. Thank you so much for sharing and for your encouraging words.

[Sue Collin]

????????‍♀️ Thanks Jen! Yes, my elderly parents are on my worry list too. They live very local to me, and while that makes things easier, it’s just one more thing to manage along with our own challenges.

We do the best we can, try not to take on too much, but help where and when we can. We actually offer more than my Dad will accept, but we at least know we are trying to make their lives better…Happy NEW YEAR!????????

[jen-cueva]

Oh @scollin, I can relate to offering more help than is accepted. My parents are like that. My mom is much easier to help than my dad. My stepdad was also stubborn with this until the very end.

My parents are divorced, but we lost my stepdad this Spring and then we lost my Mawmaw, my mom’s mother, the week of Thanksgiving. It’s been challenging from a distance. But then again, being local isn’t much easier. With the many challenges of trying to already manage both your and your husband’s rare diseases, it must be exhausting.

Happy New Year and take time to reflect and celebrate all that you mentioned when the worries pop in your mind.

[Colleen]

@scollin offering more than my parents will accept pretty much sums up my 2021 greatest effort list!

You have a lot on your plate but it sounds like you have a good and kind attitude about it. I loved reading about the positive things in your life and what you are looking forward to. I wish you the best in 2022!