Tagged: cteph, love, Marriage, rare disease day, romance, valentine's day
- This topic has 14 replies, 5 voices, and was last updated 1 month, 1 week ago by Jen Cueva.
February 8, 2023 at 11:42 am #37280
As many of us know, PH can be a real buzz kill! Has it had this effect on your love life or have you found special ways to keep romance in your relationship?
In, “A CTEPH patient discusses love, marriage, and lots of romance” I interviewed forum member @tervo about her health does and doesn’t affect her marriage.
Terese and her husband Tim share romantic tips that can benefit both patients and caregivers.
In honor of Valentine’s Day and Rare Disease Day later this month, share your feelings and suggestions about how as a PH patient or caregiver, you keep romance in your life.
February 9, 2023 at 6:32 am #37305kyParticipant
I think humor definitely helps us keep the love alive; my husband likes to wrap his oxygen cord around me and tell me I can’t get away now … that’s my favorite way he lets me know he wants a kiss. We do a lot of little gestures like grab the other ones foot for little rub while watching tv or pinches in passing. My husband also started this thing where he says Hate you and I say Hate you more .. we know we mean love and sometimes we say love you more and love you most its just silly stuff like that anything we can do to make the other one smile. We also love to plan dates or trips and call or text each other in the middle of the day for no reason. I try to be attentive to his pain levels and offer lots of massages a took a mini course and learned some pressure points specific to his most chronic pain points and my husband ordered me electronic hand warmers and heated gloves for my Raynaud’s. Little things, any thing that lets your partner know you are there and you care is so important!
February 10, 2023 at 11:52 am #37326
Hi @kygon, yes, many of us use humor to get through the days. Laughter is truly the best medicine for our overall health. It also is a great way to keep the romance alive. I can imagine your home is full of laughter with you all being jokesters, hehe.
Those simple things like texts in the middle of the day for no reason always bring a smile or laugh to each other. Manny and I do the same.
Wow, taking a mini course in massage is so cool, and what an excellent way to support Bryan and help with his pain. I would need those warmers, too, if I lived where it was cold. Last year Manny came home with me a new heating blanket as my old one had quit on me. He knows I use it for my leg and body pain. That and even a simple SBUX on his way home is something we both appreciate.
I tend to buy him his favorite protein cookies when I am out or some dark chocolate, as he enjoys those for his sweet tooth.
Do y’all have plans for a Valentine’s date?
February 10, 2023 at 4:25 pm #37343
@kygon I love the image of your husband wrapping your o2 cord around you! I’m such a romantic! This gave me Hallmark or Lifetime Movie feels!
February 13, 2023 at 11:23 am #37356
Hi @colleensteele, yes! I also thought of a love story like The Fault in Our Stars and The Notebook. But that’s a great idea, @kygon; maybe you should hit up Lifetime or Hallmark. I know with those two new grandbabies coming this year, that extra money would be helpful, hehe.
I LOVE the unique ways that you and Bryan keep your romance alive. How long have you two LoveBirds been married?
February 15, 2023 at 11:57 am #37408kyParticipant
@Colleen and JenC, I don’t think any hallmark movies are on the make with Bry and I but we do certainly have quite a story with 8 kids combined and all the ups and downs and his stroke and now a terminal illness .. that might be one heck of a drama hahaha. I will keep it in mind! Jen we have only been married 4 yrs, 5 in August but we have been best friends for a little almost 12 yrs now, I know because we met on a cliff in spring when my youngest was a year old. And yes we met on an actual cliff, he was repelling and leaned over the edge and said “That looks fun” he said, “It is, wanna try it?” and I was like “Hell Ya!” the rest is history. I mean we really were just friends for years .. the thought of 8 kids sounded sooooo scary LOL, but as they started leaving home I guess the thought wasn’t Quite as scary
February 15, 2023 at 2:51 pm #37428
Wow, @kygon, I love your story of how you and Bryan met on a cliff! It sounds like you both were already quite adventurous then you brought that together.
Eight kids together had to be frightening! But now look, you did it and had grandkids, too! What an incredible story. You may be more of a comedy love story full of adventure type of movie, LOL.
No wonder there’s never a dull moment. Throw in Bryan’s health struggles, and geez, y’all are kicking butt, my PHriends!
February 13, 2023 at 12:19 pm #37363
February 13, 2023 at 1:27 pm #37368Randolph ReynoldsParticipant
OK I’ll bite on this subject. First I told my future wife, back in 1967, that I didn’t believe in Valentines Day because it was rouse created by the card companies like Hallmark. Therefore I don’t intend to send a Valentine card to my wife because we are too closely intertwined. Every now and then I may send her something just for kicks that exaggerates my indifference to Valentine’s Day..
Our romance has maintained itself not only because of filial affections but erotic affections. The latter has faded in practice now that we are octogenarians. In truth ours is a romance drawn together by God. The events leading up to our first meeting would seem to have been set from well before. Therefore we both sense agape love in our lives.
Finally here is what I found out about the ‘heart shape’ we use for love: “The heart shape we all recognize, and use originated back to an ancient plant known as the silphium. It was a species of giant fennel grown on the North African coastline near the Greek city of Cyrene. It was used as medicine, a flavoring spice, but more importantly as birth control.” Definitely not the shape of the human heart. The one used today is a view of something else.
February 13, 2023 at 5:36 pm #37371
@ripple76 from what I have gotten to know about you and your wife I have no problem believing that your marriage is truly blessed. You are a very special couple and it’s inspiring to hear about true love stories in a world where love feels all too fleeting.
I was somewhat familiar with the fact that our symbolic use of the heart is not what it was originally but I didn’t know the story. Thank you for educating us about that. Interesting!
My husband and I along with several other couples we know, don’t make fuss over Valentine’s Day. I will sometimes give my husband a card on this day but usually we just make it a day of doing nice things for each other.
To be honest, Valentine’s Day has always been more about my kids. Probably because my parents did the same for me. I would always receive a special box of chocolates and a loving note from them every Feb. 14th. I kept the tradition going. Since my boys were little I put together gift bags of candy for them with a card. I swear they look forward to it more than Christmas. My youngest moved to Louisiana last summer but it isn’t keeping me from keeping the tradition going. I think he will be surprised when my Valentine’s Day bag arrives tomorrow!
February 14, 2023 at 10:28 am #37382
Hi @colleensteele, like you, I think more of the kids in the family and around me on Valentine’s Day. Of course, I sent KK’s V-Day treats in the mail to arrive today. I also made a V-Day Chex mix bag for my friend’s three kids. The adorable is almost 2-year-old next door; I bought a half-price cute tee and a small thing of Goldfish, her favorite snack. I miss my nieces and nephews because I always made them some little treats on these holidays.
They are all going up now, and those little things aren’t things they would enjoy. Of course, KK would look at any age; she is still a big baby.
Funny how we continue many traditions that our parents started. A few I didn’t but many I have with my twist.
I bet, like KK, your son will be thrilled with his Valentine’s bag. I love that.
I hope you and Brian have a great V-Day, and maybe you can get his favorite meal today or a treat? What would that be? I know your favorite dinner spots, well, now two places. Hehe
February 14, 2023 at 10:22 am #37381
Hi @ripple76, like you and your wife, Manny and I don’t usually celebrate V-Day as I say we love each other every day. It’s a marketing holiday; it seems we have so many. Hehe.
However, this morning, I awoke to a beautiful bouquet of flowers, candy, and a card. He left for work before I got out of bed, so this was a surprise. I usually grab him a card, maybe, sometimes, not, and perhaps his favorite dark chocolate bar.
Wow, the story of the heart for Valentine’s Day was not what I thought. I had read that it is not how it first originated, but funny that it was used as birth control. Thanks for the history lesson.
I can only imagine the abundance of love you shared with your wife. You know it takes a special couple to get through the struggles of PH. Have a lovely day, and hug your wife a little tighter.
February 13, 2023 at 7:55 pm #37378TerryParticipant
Valentines Day didn’t really become popular down here in Australia until toward the end of last century. Wow just think I was born in the first half of last century, OMG that sounds a long time ago. Anyway thats not to say it was not celebrated by some beforehand just that it was not a big deal. Now of course it is. Now we kiss each night before bed but I do not believe in such sissy celebrations as Valentines day however in a moment of weakness this morning after reading this forum I actually gave the boss a peck on the cheek . Her first reaction was to laugh and ask if I was ok.
Now she’s waiting for me to tell her what I seek forgiveness for. Boy you lot get me into trouble .wink.
February 14, 2023 at 10:32 am #37383
LOL, @terry, you are too much, Mate! I am laughing reading your comments and picture your life glaring at you with “those eyes,” thinking, who is this guy? Hehe.
Does your wife like flowers and chocolates? We hate to get you in trouble, so don’t go out and buy flowers or her favorite treat today. You may get kicked out.
Maybe you can do something today to help her with a chore; she would think something is wrong with you. Or, like me with Manny, I say, “now, what did you do?”-
February 14, 2023 at 8:56 pm #37403
@terry that is too funny!! Tell her you were just feeling thankful to have such an amazing wife!
I heard a radio DJ today mention that she thinks of Valentine’s Day as a 2nd Thanksgiving. A day to reach out to the ones you love and be thankful they are in your life. I like that way of thinking!
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