- This topic has 46 replies, 5 voices, and was last updated 6 months ago by Jen Cueva.
May 5, 2022 at 11:14 am #34264
Summer is around the corner. Schools will be out soon, and the weather will warm up.
Last week, my husband, Manny, and I had a beach day. We planned accordingly, with extra water for hydration, sunscreen, and a sunhat. Don’t forget that many medications cause sensitivity to the sun.
What’s your best advice for sun protection as you enjoy the longer daylight hours?
May 5, 2022 at 5:16 pm #34269
This is an important topic @jenc. Cullen has to be super careful. His transplant medications make his skin extremely sensitive to the sun and susceptible to skin cancer. Adding to the concern is the fact that skin cancer can be hereditary and both of my parents have struggled with it.
Cullen’s transplant doctors have requested he be checked for skin cancer by a dermatologist at least once a year. I think we will make that a goal this summer.
May 6, 2022 at 10:45 am #34274
Hi @colleensteele, I think it’s a great idea that Cullen will have his skin checks done with a family history of skin cancer. What about you? Have you had any done? It sounds like it should be something to add to your medical calendar. Having this done each summer is a perfect time since the sun is out, and most are spending more time outdoors.
I haven’t had a skin check yet, but I know others. @cdvol3gmail-com, didn’t you have this recently? @tervo, does your dermatologist do a complete skin check when you go in for a visit?
Many of our medications cause sun sensitivity. Y’all use skin protection when you’re outdoors.
May 6, 2022 at 1:27 pm #34280
Hey Jen and Colleen, appointments with dermatologist in a couple of weeks. It is so important these days with adverse reactions from our meds and all those years growing up sailing, swimming not using any protection and worse yet, sitting out in the sun forever on purpose wearing baby oil!!! YIKES!
I have had 2 melanomas and Dick has had more than a dozen non-melanomas chopped out.
Really glad to hear Collen is going to be checked out. Isn’t your time Colleen?
Great reality check Jen, thanks ????.
May 6, 2022 at 2:53 pm #34281
@cdvol3gmail-com I hear you! We’ve had a lot of fun in the sun, especially in our youth, haven’t we. I practically grew up at the Jersey shore and so did my mom. My mom’s dermatologist told her that her skin cancer started developing in her youth but didn’t present until she was an adult, and I guess that is the case for many. Scary to think about.
Oh my goodness, do you know what I did in the 80’s? I slathered myself with baby oil and iodine to lay out in the sun. If I could go back in time and slap myself I would!
Because Cullen has so many “important” doctors he needs routine clinic visits with, we have found ourselves procrastinating on making a dermatologist appointment. Thank you @jenc for reminding us that the dermatologist is also very important!
May 6, 2022 at 3:01 pm #34283
I grew up in RI then spent years in the Caribbean ⛵ sailing – no protection! We are paying for it now!
Both Dick and I see the dermatologist every 6 months. Lessons learned for the next generation.
Hope all checks out for Cullen!
May 6, 2022 at 3:18 pm #34287
@cdvol3gmail-com I’m sorry you are both paying for it now but thank God you have the sense to keep up with the dermatologist. My mom has gone a number of times convinced the doctor wouldn’t find any concerns but he had. For peace of mind it’s good to keep up the appointments. I hope you get the all clear during your next visit!
May 9, 2022 at 11:53 am #34295
Hi @cdvol3gmail-com and @colleensteele, Oh my! I thought I was the only teen here that that baby oil or baby oil and iodine combo lie in the sun for hours! Eeekkk
That’s certainly on my list to get to, but my new PCP has a ton of other priority tests ahead of this, so once I get those caught up, I need to add this to mine. Making this annual check-up on our skin during the summer will be an excellent way to remember to schedule it.
I can imagine sailing around the world with no sunscreen didn’t pay off either. Hugs and prayers that you and Dick both have a positive appointment this month. However, that sailboat trip sounds fantastic! You all were fortunate to have such adventurous lives! I remind KK, our daughter, to travel and adventure now, and she takes that advice. Funny, I told her this weekend, “some advice you may never hear bit that you took and ran with, LOL.”
I hope you both enjoyed a lovely Mother’s Day weekend!
Please let us know how Cullen’s labs and appointments go, Colleen. Also, @cdvol3gmail-com, updates after your appointments,
May 9, 2022 at 6:34 pm #34309
@jenc Cullen’s labs came back with no problems. His transplant med levels are where they need to be and his nephrology labs came back with no issue too. He admits he hasn’t been drinking as much water as he should so he was surprised his creatinine was stable. Next is an in-clinic appointment with lung transplant at the end of the month.
I thought I would add something funny/not-funny in line with the baby oil and iodine.
I had natural auburn hair in my youth which changed into a chestnut brown as I got older. But when I was 13 I wanted to be blonde so bad! So that summer, in addition to lathering my skin with baby oil and iodine, I sprayed (soaked) my hair in Sun-In (do you remember that stuff from the 80’s) and sometimes mixed it with peroxide or lemon juice.
It worked! My hair was a pretty sandy blonde BUT by Christmas it turned orange! When my mom started to notice I remember she screeched, “What did you do!!!” I had to cut my long hair very short so it could recover.
That cured me of my desire to be blonde. I’ve stuck with the color God has given me every since.
Anyway, not PH related but worth a good laugh.
May 10, 2022 at 6:35 pm #34317
So happy ???? Cullen’s labs were go to go! Hope it all goes as well eith transplant team coming up!
Sun-in!! I loved your story! I also used it and I am a blond! I just wanted to be a lighter blond! And … my hair turned orange ????! Oh how we do learn- thanks Colleen for your sense of humor – we all need to laugh and laugh at ourselves
May 11, 2022 at 10:52 am #34326
LOL @cdvol3gmail-com, yes, we all wanted the opposite of what we had. I bet your hair was already a beachy blonde, my friend. Mine was dark, and I wanted those natural-looking sun glowing highlights they showed on the commercials back then.
Did a friend suggest it to y’all, or was it something you found yourself? I admit I have been under peer pressure from a friend as we thought it would be fun and beautiful.
Have a lovely week, ladies. Thanks for the laughs, @colleensteele. Prayers continue as Cullen seems on the transplant team later this month.
May 11, 2022 at 10:49 am #34325
Hi @colleensteele, I’m so happy that Cullen’s labs returned stable for both his kidneys and transplant med levels. Do I need to start texting him to drink water? Manny gets a constant reminder to drink water, and I asked how much water he drank that day at work, LOL. My mom is also one I remind as she and my dad are both not too good at staying hydrated with water.
I guess I’m the water gal, LOL.
OMG, KK and I were just talking about Sun-In yesterday. As I mentioned, my hair was too dark for summer. She says they still sell it, but I haven’t seen it not looked for it.
I snuck in some Sun-In and used a bottle or two as a teen, and my parents didn’t know until my hair started changing colors. At first, I told a flat-out lie and said it was because I was in the sun so much. I forgot to mention that time about the help of Sun-in. Mine did also turn a red tinge but not organe. I finally told them and stop using it. I’m sorry you had to cut yours after turning it orange. It sounds like you already had that sun bleach blonde look. We all want what we don’t have, especially growing up in our teens, right? Too funny.
May 11, 2022 at 4:16 pm #34335
@jenc he is usually so good about his water intake but I think that Statistics class distracted him. It’s over now and he is back to drinking water like he should. LOL!
May 13, 2022 at 11:42 am #34355
Yay, for that Statistics class being done, and Cullen tackled it! So he can focus on drinking his water again. That’s important and hopefully will help offer him some relief.
I need to be cautious with water by drinking enough but not too much with my fluid restriction. This was always challenging for me in Texas, so hopefully, I’ll find a better balance here in SD this summer.
May 13, 2022 at 12:29 pm #34358
@jenc I remember all to well the complicated balance Cullen tried to maintain when he had PH. Drinking enough water but not to much is challenging, especially because some PH days are worse than others, so how much is too much?
May 16, 2022 at 11:11 am #34371
Hi @colleensteele, funny that you ask that question. How much is too much?
My previous kidney doctor said water versus overall fluids and allowed so much that way. The new nephrology team is back on top, adding all liquids together. I reminded them that taking medications 4-5 times per day; I need water to wash those pills down. Currently, they suggest 2 liters of total liquids; this becomes challenging when I want a glass of wine, soup, ice cream, etc.
Did you mention Cullen was on a fluid restriction at times, too?
Maintaining this balance is undoubtedly always a challenge.
May 23, 2022 at 6:47 am #34437
We have a couple of camping trips and a beach trip planned. I have a question. We are going on a cruise in January. We would like to fly to LA instead of driving. However, I was going to take my home concentrator. The airlines have rules for doing this, and it seems impossible to take it on the plane. Is there another alternative I need to be aware of?
May 23, 2022 at 11:12 am #34443
Hi @debbie, that cruise sounds lovely. This is your anniversary cruise, right? You will need to rent a portable oxygen concentrator (POC); there are certain ones that the airlines approve. But this is now almost all that are commonly sold and rented. You can check with your oxygen supplier to see if they offer rentals or even loaners for travel.
Check out this list and info by the FAA on POCs.
Here is a topic about cruising with oxygen that you may find helpful.
Now, will you have a machine and tanks on the cruise? You’ll probably find a POC handy there, too, to get out and do any excursions, etc.
How far is your drive to LA? You have time to get this lined up, so kudos to you for being proactive.
May 25, 2022 at 9:24 am #34458
Hi @jenc. This cruise is to celebrate our 40th wedding anniversary. I have a POC and am ordering an additional battery for it. The cruise ship does not allow cylinders on board, so I need a large concentrator. The topic you linked was helpful. One person said you could contact your O2 provider and have them deliver one to the ship. So I will look into that. If that works, we will fly. It takes several days (4) to drive to LA. Thanks for the help.
May 25, 2022 at 10:35 am #34462
Hi @debbie, yes, your oxygen company should be able to do that. If they are a smaller company, they can contract with someone who will cover it for you. Please let us know what they say once you speak with them.
Again, this is exciting, and what a lovely trip to celebrate a huge milestone! Forty years is rare, it seems nowadays. My daughter told Manny and I on our 30th this year that she could only count two friends whose parents were married 30 plus years. But this seems to be the norm.
For us to celebrate those significant milestones is even rare since we have PH’s daily stress and struggles. It sounds like you have a keeper. That makes a huge difference in our lives and how we get through these struggles, right?
August 26, 2022 at 10:22 am #35659
Labor Day is just around the corner, y’all. Although our summer is coming to an end, many of us will continue to enjoy some sunshine a bit longer.
Because of that and the conversation on this topic, I wanted to share something I read yesterday about melanoma. Although it is tailored to women, it does include men who are at risk, too.
Check out this article from John Hopkins.
Melanoma: What Women Need to Know About This Skin Cancer
What are your takeaways after reading?
August 30, 2022 at 12:25 pm #35693
I also wanted to ask about any Labor Day plans y’all have this upcoming weekend. It’s usually a holiday here in the states where we close the summer.
We don’t have any specific plans, except I want to enjoy beach time. What about everyone else? Does anyone have any plans this weekend to celebrate Labor Day?
August 30, 2022 at 2:24 pm #35696
We are going to Evans, GA for the Grand National MCA Show. It will be the first time in showing our Shelby GT500KR. Since we lived there 20 years before moving to Mount Airy, NC, we have lots of friends to see as well. It should be a wonderful weekend.
August 30, 2022 at 6:56 pm #35702
How wonderful @debbie! Have a great time! I hope you tell us all about it when you return.
August 31, 2022 at 10:47 am #35711
Hi @debbie, that sounds like fun! I’m a tad envious of that Shelby GT500; a dream, LOL. Please message me a picture if you want, and I can try and add that for others to see when you’re at the show. You can also take one with you and make it your profile picture.
I hope and pray that y’all have safe travels and enjoy the show. I look forward to hearing more about this once you return. But so excited that y’all are getting back to things like this y’all enjoy.
September 7, 2022 at 8:36 am #35755
@jenc I’m not sure how to message you a picture. I didn’t see anywhere to attach a photo. We had a wonderful weekend even though it rained on Friday and sprinkled the other days. We managed to get the Gold award in our class. We also saw so many old friends and ate at an incredible restaurant. Overall a fabulous weekend.
September 7, 2022 at 1:00 pm #35764
Hey @debbie, wow, that’s impressive and exciting for you and your hubby! Congrats!
I learned that we couldn’t add images yesterday, so my apologies. I’m happy to connect on social media if you’re on FB; feel free to connect.
I’m happy that you had a lovely weekend. Great food and yummy food are always a big bonus. Are you back at home already?
September 8, 2022 at 7:37 am #35775
We came back home on Monday. It was nice to get back on the home concentrator! My POC was just replaced and it is not right. They are sending a new one, but once again it is on back order. I’m glad it runs, so I don’t have to use the air cylinders. I just have to make sure it has battery power.
Closing of the business has been set for Wednesday the 14th. I’m beyond excited and beyond busy!
Are you feeling better now?
September 8, 2022 at 12:38 pm #35779
@debbie it’s nice to get away but nothing beats Home-Sweet-Home, does it?
It’s so nice to hear you excited and a good kind of busy. I’ll keep you in my prayers on the 14th!
September 8, 2022 at 1:27 pm #35784
Hi @debbie, I’m sorry to hear about the ongoing issues with your POC. Do they have an ETA on when you may receive the new one?
Wow, the 14th will be a big day. Bittersweet, I bet for you and your family. I’ll be thinking of you.
I am feeling better, for the most part, thanks. How are you doing? Are you exhausted after your trip?
September 13, 2022 at 8:19 am #35809
@jenc I have another POC – Yay! I’ll be trying it out today at my last day of work. I have butterflies in my stomach, but it feels like it is more in my lungs. Could that be anxiety? So much still to do. I’m bouncing around on the forum procrastinating all that is left to do. Y’all give me such a calm.
September 13, 2022 at 11:01 am #35821
Hi @debbie, I bet you are full of anxiety and nervousness. It must be bittersweet going to work for your last day. Tomorrow is the big day, closing!
I know you’ll be on an emotional rollercoaster until it hits you, and probably a bit more relief once you get this passed. I’m grateful that you find the forums calming. We are always here for you and ready to comfort you as you experience such an eventful time.
My stomach is a ball of nerves when my anxiety flares. I am sending you extra big hugs, positive thoughts, and prayers, my PHriend.
Yay for the new POC! 😀
September 15, 2022 at 1:51 pm #35856
Hi @debbie, you’ve been on my mind, so I wanted to check in and see how you’re feeling after the closing yesterday on your shop. Is it a bittersweet feeling or a relief to have it done?
How are the “butterflies” you described in your stomach and lungs? Did that resolve?
I’m sending you extra hugs, love, and prayers this week, my PHriend.
September 19, 2022 at 9:28 am #35863
I am relieved. I still am working on cancelling vendors, answering questions and paperwork. But it can be done on my time. No more butterflies. I think it was anxiety. I can’t wait to get to my list (I’m a list person) of things I want to do that I have put off for too long – some fun, some not so fun. I’ll do the fun ones first! Thanks for the hugs, love and prayers @jenc!
September 19, 2022 at 10:15 am #35869
Hi @debbie, I’m happy that the anxiety has resolved and you feel relief. I’m sure doing those calls on your time is much better than juggling them while working in the shop.
Yes, I also am a list person. I look forward to hearing about some of your tasks. That’s a great idea to start with some of the fun ones. I would mix them up but like you, starting with a few fun ones is best.
How is your hubby feeling? I will continue to keep you and your family in my thoughts and prayers.
September 19, 2022 at 12:26 pm #35872
Hi @jenc. All the tests for my husband went well. Just a few more pills to add to his pill box.
Most of the tasks I don’t want to do require me being on the phone. I live in the middle of 10 acres of trees. Phone reception is horrible, so I have to go outside to talk on my phone. Sometimes I even have to take my computer out there. It’s like living on “Green Acres”. So if they ask for something that is inside, I just can’t take the phone with me. Yet those tasks must be done. But not today! he,he!
September 20, 2022 at 12:02 pm #35882
Hi @debbie, I’m happy that your hubby’s tests went well. Adding those few extra pills hopefully will help him.
I think about my dad’s or late grandparents’ property when I read your Green Acres analogy. I always struggle with cell phone service when I’m out in the “woods,” as we say. It’s peaceful for a while, but it makes it challenging when you need phone service and can’t get it.
Maybe you can build a treehouse up high and sit alone when making calls. When I was little, we had a huge treehouse on our late great-grandma’s property. My cousins and I would all play in it, so it seemed gigantic back then. The only thing left there was a few old blocks as she lived in an old block home. That and her huge magnolia trees are what I now see when driving by.
THose calls are never fun, so hopefully, you’ll catch them soon. I try NOT to make many calls on Mondays and Fridays unless it’s essential because I feel like I’m on the phone most of the other days.
August 31, 2022 at 10:49 am #35712
August 31, 2022 at 12:44 pm #35722
I actually get a nice little quiet down time this weekend with my 12 year old, Bryan is flying to Texas to surprise his oldest son for his birthday and I didn’t want to take Tegan out of school right after it started (first year of jr high and first month of school) not to mention flight costs so hubby is going solo. I am a little nervous but we pre called the airlines so he should get taxied around through both airports and he has his POC with extra batteries and Chris will take good care of him in Texas. Bryan is very excited and I pre counted all his pills and we have the check list from our last trip so that helps me feel better about it.
I started painting tires to turn into planters and I think I will start getting the weed fabric and maybe even set one or two and get them planted hahaha, I might go for a hike with a friend, she is going to let me know if she can break away, most importantly I plan to unplug the 12 yr old … rock hounding or swimming or out for Anything hahaha he wants to live on electronics and it makes me coo coo bananas.
@JenC What do you have planned for the long weekend? Hammock at the beach perhaps in the plan?
August 31, 2022 at 5:26 pm #35730
Worry aside, it sounds like a nice weekend ahead of you @kygon and for your husband too! How will your son feel about being unplugged? LOL, when my boys were that age and I did that I was the meanest mom ever! As they got older, surprisingly they would sometimes unplug on their own. I love the plans you have in mind. Sounds perfect!
September 2, 2022 at 11:54 am #35736
Hey @kygon, I know that Bryan will do fine on his flight to Texas. Did he get a straight flight, by chance? I would say anyone could if I flew to Alabama from Cali alone. But Manny was more nervous than I was until I arrived safely. I’m so happy that Bryan feels like going to surprise his son for his birthday. Where in Texas is he going to be?
I love that you will spend time unplugging with your 12-year-old son. That’s a challenge, I imagine. But I know you can handle it, LOL.
Enjoy your “quieter” weekend enjoying the simple things, although it sounds like you will keep busy. Maybe you take some hammock and wine time, too.
We don’t have any specific plans minus a beach day, maybe 2, if I’m lucky. Hammock time is always a chill time. Thanks for that suggestion – I love the time I’ve spent in mine already. I caught Manny chillin’ in it the other night as he was grilling the meat for dinner while I was inside making the sides. He was busted!
September 6, 2022 at 12:07 pm #35746
Hey @kygon, how did your weekend go? Did you get the 12-year-old away from technology a bit?
How was Bryan’s trip to Texas? I bet his son was truly surprised. That’s so sweet. I bet he will be tired when he returns. Did he fly back in that busy airport mess yesterday?
I hope everyone else had a relaxing weekend. I did a lot indoors since we were in the middle of a heatwave. We tried outdoor mall shopping one morning (my idea). But we made it to 2 stores and enjoyed a light brunch. Then, I said it was too hot to shop, LOL.
Did anyone take advantage of the $3 movies on Saturday for Cinema Day? Many of our friends enjoyed that but bought tickets in advance.
September 7, 2022 at 9:28 am #35758
@Jenc, weekend went well for everyone and his son was very surprised. I did manage to unplug my 12 year old for swimming and just some fun chit chat and then he showed me a silly show called nailed it and we laughed till we cried… I love getting the giggles like that. It was so hot this weekend that I didn’t get to everything I wanted to outside so I totally understand the “too hot to shop” I think it was better that I didn’t plant a bunch of things during this weird September heat wave, its too hot for new plants, perhaps October will be a bit better for outside activities. Bryan’s trip was a success but it was so hot and humid in Texas they were also forced to be inside, and Chris’s wife got sick and gifted my hubby with a nasty head cold so now I have a baby hubby hahaha. But I’m happy to have him back home although I hope the rest of us don’t catch his man cold!
September 7, 2022 at 1:09 pm #35765
Hi @kygon, it still sounds like a fantastic weekend with all the laughing and giggling with your 12-year-old son. I’ll have to look that show up; we all could use more giggles, right?
Ughh, I can understand the heat and humidity in Texas in the late summer as I’ve lived it. I was so sick of being indoors for over half of the year. That’s why SD is much better for me. It sounds like his flight and the birthday surprise went well, and he enjoyed it. So sorry that Bryan brought home that “man” cold, hehe.
Yeah, I think this heatwave here will be over this week, or so I hope. Take care of each other and try hard NOT to catch his man cold.
I know he’s happy to be back home, too. Plus, you can nurture him better to get rid of his cold. I’m hoping and praying that he doesn’t give it to anyone else at home.
September 1, 2022 at 6:54 am #35731
@ColleenSteele, Oh no I will be the meanest even if we go swimming hahaha silly kids, I hope your right and he will unplug himself when he gets interested in girls hahhaa
September 1, 2022 at 6:53 pm #35732
@kygon I hate to tell you but you probably have a ways to go. When they start “adulting” they start to appreciate the value in silence a little more. Not that they unplug that often but it’s nice to see them doing it on their own when they feel the need to decompress for a while. Just know you are not the only mean mamma out there. Many of us have been as cruel as you. LOL!
September 2, 2022 at 11:57 am #35737
LOL – that is too funny, @colleensteele and @kygon. AS a mom to only a daughter, I hear the challenges with boys are slightly different. Plus, KK is older, and thankfully we didn’t have as many tech gadgets as we do now, it seems. Geez, now I sound ancient, hehe.
And I guess we’ve all been that “mean” mom sometimes.
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