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    • #15724
      Kathleen Sheffer
      Participant

        Happy February, everyone! It’s chilly even here in San Francisco. Everyone is flipping out about 40 degree weather and a chance of snow in the Bay Area. I love February because February includes Valentine’s Day!

        I didn’t always love Valentine’s Day. In fact, I kind of hated it. In high school I felt like everyone got Valentines except me. I longed for my elementary school days when every kid had to bring a Valentine for each classmate. Ha!

        Now I’ve rebranded Valentine’s Day to be a day to celebrate my hearts. Yes, hearts. Two years ago I hired my friend to do an illustration of the heart I was born with. A pathology lab had sent me photos of my heart right after it came out of my chest during my heart-lung transplant surgery. These photos aren’t pretty. I think they’re cool, but let’s just say…if the illustration below grosses you out at all, you don’t want to see the original.

        valentines

        Anyway, I thought this illustration was amazing, and I printed it on 100 postcards that I mailed all around the country to my doctors, friends, family, and other supporters. It was so much fun dropping a handful of cards covered in anatomical (sick) hearts into a postbox!

        valentines

        This year I’m gearing up to do something similar. I want to add to my collection of art inspired by my surgery. And a focus on celebrating my birth and recycled hearts certainly takes some of the romantic pressure off the holiday.

        Even so, I’m looking forward to having a quiet evening at home with my boyfriend on the 14th. Do you have any plans for the holiday? Going out for dinner can be exhausting and usually we need a reservation so the last couple years we’ve opted to stay in and cook. I think this year we might just order in to make it extra easy on ourselves.

        Do you do anything special for Valentine’s Day?

      • #15736
        Vanessa Vaile
        Participant

          Valentine’s Day… not so much for years. I used to look for unusual Valentines for my Mountainair NM community page but haven’t been doing it here. Love the (re)branding idea. So I just dug out a couple of Valentine’s Day garlands that I picked up for the tumbleweed but never used and draped them on my oxygen tank and general utility cart.

          • #15738

            Vanessa,
            I love the decorating of the oxygen tank inspiration! I should decorate mine with some hearts! They also have battery powered string of lights that I might drape around it to make it real romantic 🙂

            • #15742
              Vanessa Vaile
              Participant

                @brittany-foster, instead of using the usual tank cart, I often strap my tank into the corner of a standard laundry/shopping cart with brightly colored bungee cords. That way I can carry my folding seat, purse, extra items, etc and run errands on foot without worrying about carrying extra bags — the habit of a former NYC apartment dweller. This afternoon I draped a Valentine garlands with hearts on the cart — and after reading your comment, checked Amazon for strings of battery powered lights. Practical too in case I am out after dark. I’ll have to take a picture.

                PS Your boyfriend sounds like a real keeper

              • #15747

                Vanessa,
                That sounds like a great creation with the cart! Especially using the bungee cords to keep the tank in place. One of the struggles I had with using a backpack was finding a backpack that didn’t make the tank wobble around in it. I finally came across hiking backpacks and use that when I go out for a short amount of time (especially because those small tanks only last so long!) I love the decorating and would love to see a picture of the finished product! Glad you looked up some of those lights, I think it would add a great touch to it!

                And yes, my boyfriend has been really great with all of this. It isn’t always easy and takes a lot of patience from both of us but I feel like after 6 years together we just “get it” more now. Especially after this long and knowing everything he knows about my conditions I don’t have as much of a fear of him not being able to “handle it”. It’s good to get to this point together 🙂

              • #15784
                Vanessa Vaile
                Participant

                  @brittany-foster,not quite finished yet but here’s a pic of the work in progress,https://drive.google.com/file/d/1tiQB8iSsnOezF9tNmjq8ytuUCkTvi5hP/view. The small hearts in the garland might not show up that well. My folding seat is in the cart too, battened down with a small bungee cord.

                  I plan to hit the local dollar store for 💔 decorations on sale ~ larger, more visible hearts.

                • #15785
                  Kathleen Sheffer
                  Participant

                    Adorable, Vanessa! Can’t wait to see the finished piece.

                  • #15786

                    I absolutely LOVE that idea Vanessa! You’re so creative with it. I believe I follow your Instagram? I remember seeing a photo and “liking” it with a cart and an o2 tank! Was that your Instagram account where you posted a picture of it?

              • #15737

                Kathleen,
                I absolutely LOVE your idea with the cards !! That is awesome and so creative and NOT GROSS at all to me! I love all things anatomical 🙂 #nerd . Valentine’s Day is my anniversary with my boyfriend (cliche I know…gross! hahahaa) . This year will be 6 years together. Unfortunately I have been having that trouble with my esophagus being compressed my aorta which hopefully will be getting surgically corrected in the near future, but for now I am being tube fed and jello and broth doesn’t make for a romantic evening lol! I CAN drink coffee and tea though so my boyfriend and I will celebrate on the weekend and find a cute coffee shop that we haven’t tried out yet. He has been really creative with coming up with things to do that don’t involve food and that is highly romantic to me! Usually we used to spend the night out at a nice hotel and do dinner and drinks but this year, we are just rolling with the cards that were dealt to us ! Happy 6 years to us 🙂

              • #33383
                Colleen Steele
                Keymaster

                  Monday is Valentine’s Day. Have you made any plans with your special someone?

                • #33401
                  Jen Cueva
                  Keymaster

                    Hi @colleensteele, nope, we don’t have any plans yet. But, I’m guessing that we will order something to eat at home or cook something that we both want.

                    Valentine’s Day is also my 17-year PH-anniversary. So, I tend to forget about Vday and more about another year with PH. I’m beyond grateful to be here 17 years later.

                    Do you have any plans? Maybe order in your favorite Italian place?

                  • #37273
                    Jen Cueva
                    Keymaster

                      Hey, y’all, Valentine’s Day is next Tuesday, and Galentine’s Day is a week from yesterday.

                      I am thinking of trying to gather a few gal friends and do lunch or brunch in the near future. I’ve never really celebrated Galentine’s Day.

                      Katheleen’s idea above is incredible and may inspire others this year for Valentine’s Day. Yes, it’s also my 18th PH anniversary, so I am incredibly grateful.

                      What’s on your plan this year to celebrate?

                      • #37285
                        Colleen Steele
                        Keymaster

                          @jenc I’m behind the times! LOL! I had to look up what Galentine’s Day is all about.

                          In case no one else has heard of it until now the website, “National Today” explains…

                          “The female friendships we so heavily rely on are celebrated each year on Galentine’s Day on February 13. Originating from the popular TV show ‘Parks and Recreation,’ the holiday is all about declaring love and affection to the girls who make up our support system. Go Girl Power!”

                          I’m pretty sure my husband and son’s have watched every episode of “Park and Recreation” but I wasn’t an avid follower. Must have missed this one. In honor of “Galentine’s Day” I will try to find it and watch!

                          Congratulations on your approaching 18th PH anniversary @jenc! You are one (H-E-Double Hockey Sticks) of a PHighter! Love you you PHriend!

                          • #37297
                            Jen Cueva
                            Keymaster

                              Hi @colleensteele, I only learned of Galentine’s Day about two years ago. KK taught me about it. Funny how much our grown kids can teach us, right?

                              Thanks for sharing some background on Galentine’s Day for those who may have never heard about it.

                              Thanks for your heartfelt words. You’re such a huge supporter and encouraging friend, Colleen. Your continued love and support mean so much to me.

                              BTW, I don’t feel like I’m strong. I find strength in others like you and our other members. But thanks so much, love ya bunches.

                        • #37277
                          Terese Tuohey
                          Participant

                            Dear Forum PHriends,

                            I had the opportunity to interviewed by Colleen Steele.  I hope you can all read the following article.  It will be in the BioNews Monday.  https://pulmonaryhypertensionnews.com/columns/cteph-patient-discusses-love-marriage-late-life/

                            Happy Valentine’s Day!

                            • #37282
                              Colleen Steele
                              Keymaster

                                @tervo I can’t thank you and Tim enough for being open to an interview and for sharing as much as you did about your health and marriage!

                                PHriends, I just posted a topic inspired by this column. I hope it will inspire some conversation!

                                Clink to go to the topic: How Have You Kept Romance In Your Life?

                              • #37298
                                Jen Cueva
                                Keymaster

                                  Thanks, @tervo and @colleensteele, for a beautiful love story to celebrate Valentine’s and Rare Disease Day this month. I smiled, and my heart was whole as I read this interview.

                                  It’s the special little things, like making each other laugh; I must agree with you, @tervo. I love this paragraph, ” Remember, love is shown in many ways, not just sex,” Terese advised, “although pillows (lots of them) in bed are helpful for staying elevated to help [with] breathing during those intimate moments.”

                                  I second this suggestion and reminder that intimacy isn’t about sex. Those holding moments and making us feel secure as we are crying, and even simply holding hands, Manny and I have found means so much.

                                  Happy Valentin’s Day to you and Tim, @tervo. I know he will spoil you rotten as usual. Take care of each other, and thanks for sharing such vulnerable moments with us, so others relate and are inspired.

                                  This is such a beautiful love story, @colleensteele!

                                • #37412
                                  Debbie Moore
                                  Participant

                                    Beautiful couple, great article.

                                • #37364
                                  Jen Cueva
                                  Keymaster

                                    Happy Galentine’s Day to all of our Gals here in the forums. Remember, you are loved, beautiful, and enough. Enjoy the day, and have a coffee, chocolate, or drink of your choice today to celebrate all of the Gal Pals in your life.

                                    Here’s a list of books to get your Galentine’s Day started. A friend of mine sent me the list, but I haven’t yet read any of the books. These books offer some fun and inspiring stories of women’s friendship bonds.

                                    Galentine’s Day Books Not to Miss

                                    • #37372
                                      Colleen Steele
                                      Keymaster

                                        Happy Galentine’s Day @jenc and all the wonderful gals I have come to know and love here! I appreciate how much all of you have touched my life!

                                        Thank you Jen for the book suggestions. I will try and check at least one out because so far I am failing miserably at my New Year’s resolution to return to the avid reader I once was!

                                        • #37379
                                          Jen Cueva
                                          Keymaster

                                            Thanks, @colleensteele. You’re not alone in falling behind on your NY goal to read more. I, too, have not read as I hoped I would. I have several new books, but I may look into one of the gal pal books to see if that change will get me into gear. Although, I have a variety to choose from now, LOL.

                                            I was hoping to read at least one book monthly- I am already behind. My attention span is still not where it needs to be, so that throws me off. Do you or others struggle with this, too? If so, how do you stay focused?

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