Tagged: 30 Days of PH, PH Awareness Month
- This topic has 19 replies, 4 voices, and was last updated 2 months, 2 weeks ago by Jen Cueva.
October 13, 2022 at 6:22 pm #36130
It’s that wonderful time of year again when you can spread PH awareness and advocacy by sharing your story! “30 Days of PH” was created to highlight the different voices within our community.
Each day in November, we will feature the story of a person close to PH. This could be a patient or family member, partner or friend of someone with PH. Patient advocates and healthcare professionals are welcomed too! Our goal is to have a collection of different approaches to different facets of life with PH that could (hopefully) connect and empower our readers.
Contributions are all voluntary, but keep in mind that we’re only looking for short posts. You can check archives from last year’s version of this initiative here.
I am gathering stories throughout the rest of October. Please send me a direct message in the forums or email me at [email protected] if you are interested!
(We are looking for people who haven’t participated in the past so that everyone has a chance to share their PH experience. If you have already participated, thank you! Encourage others to do the same!)
October 14, 2022 at 1:18 pm #36141
Who wants to share some of their PH journey? Colleen makes it simple, and so many who were nervous, including my hubby, Manny, feel so good after sharing. It’s therapeutic and also helps others.
We are happy to help anyone who wants to participate this year.
October 16, 2022 at 7:29 pm #36147
@elche, @dpchapman, @pam-muell, @carol-alexander I direct messaged you regarding 30 Days of PH. If you think you might be interested you can email me at [email protected] and I will send you more information! Thank you!
Members, I am still looking for people to share there stories. It can be about any way that PH has touched your life. Reach out to me if you are interested!
October 18, 2022 at 2:21 pm #36165
Hey, we are still looking for those who have not yet shared their PH journey to participate this year. I know from others they have enjoyed it once they start writing, and we share their story on social media.
We will help you with questions, and it’s a pretty simple process. Who wants more information on how to participate?
October 18, 2022 at 6:27 pm #36170
If you have participated in “30 Days of PH” in the past, share with others how it benefited you. Did you find it therapeutic? What kind of response did you receive? Why did you decide to share your story? Help encourage others to share theirs.
If you are interested in participating in “30 Days of PH” please message me at [email protected]
October 20, 2022 at 9:42 pm #36188
PHriends I need your help. Please consider sharing part of your PH story through “30 Days of PH”. The process is easy and it only needs to be 400 words, in fact it can’t go over that. Concerned about your writing skills? Let our editors worry about that part. All we need from you is your experience.
The topic can be about anything in your life in which PH has effected for example: Working or going to school with PH, family life, having or not having children, treatments, side-effects, hobbies, depression, anxiety, friendships, self-advocacy, caregiving.
Stories can be told by patients, caregivers, a spouse/significant other, or sibling.
Not interested yourself but think you know someone who might be? Please give me their name and/or pass this information on to them and ask them to contact me at [email protected]
October 21, 2022 at 2:06 pm #36193
Thanks, @colleensteele, for reminding us that our editors make us all look like we are excellent writers, so worries there. I can attest to that, hehe.
October 23, 2022 at 1:19 pm #36203
Hey @debbie, would you like to write about selling your business after it was too taxing on your body? I think that would make an excellent PH journey for 30 Days. But mostly, your resilience to keep dreaming and finding things that you can enjoy that aren’t too much.
Also, @hall-skara, what about sharing how you enjoyed the PH Conference and what you learned for those who may think about going but are uncertain?
@auntlizzie, what about writing about how you stay active with PH? Didn’t you do some dance classes?
I’m happy to send you more info if you message Colleen or me here. Anyone else who hasn’t yet shared your story would love to help you this year, and we need your help spreading awareness.
January 9, 2023 at 11:03 am #36930Debbie MooreParticipant
Hi @jenc. This is horrible. I’m going through emails and I missed this one. I would have loved to have written about PH and having to close a business. Since I missed it could I write it for next year?
January 9, 2023 at 8:02 pm #36939
@debbie you most certainly can! I’m so glad the message caught up with you and that you are interested in participating in “30 Days of PH 2023”! Consider yourself on my list to contact at the end of September when I start recruiting people!
If anyone else would like to be contacted about this campaign in the future please let me or @jenc know!
January 9, 2023 at 12:57 pm #36931
Hi @debbie, no worries! You had a lot on your plate at this time. But most definitely, this would still be a great story to share for November. @colleensteele usually leads this project, so she will have you on her list to contact. She may start reaching out in late September and early October if possible.
We know PH can create a few bumps in the road, so allowing extra time is given when possible.
Are you preparing for that trip to Hawaii, my PHriend? So excited for you! Extra medications, oxygen, etc., are essential for you and your hubby. Maybe making a checkoff list like @kygon does with trips will be helpful.
January 10, 2023 at 9:06 am #36940
@JenC, @debbie, the check off list is a definite must and make sure you pre register your Oxygen or POC for your flight and arrange to have wheelchair assistance in advance, it can be a big game changer as most airports a very large and I don’t know about you but my husband definitely can’t walk that far even with oxygen… and I really like the “fast pass” so I joke about never traveling without him lol.
Hope everyone had a wonderful Christmas and New Year! We certainly did in Cabo but came home to SNOW SNOW SNOW and grey skies … I am already looking forward to the next trip!
January 10, 2023 at 2:45 pm #36946
Hey @kygon, so happy to see you pop in again. Happy New Year!
It sounds like Cabo was beautiful! That must be a mood changer to come home to that snow and grey skies. Come on to San Diego, just not this week. We are having wet weather and grey skies. I am so in need of my Vitamin D from the sunshine. Hehe.
When is your next trip? And where?
That check-off list and notes about making arrangements with the airlines ahead of time for any wheelchair and assistance, plus the oxygen info, are always best. Although I had my chair, when I flew alone, even from making arrangements early on and again the week prior, they were short-staffed at the Dallas airport, and I waited for some time for a wheelchair to carry me to my next flight. It was about time for me to try and push myself. But I would have never made it that far.
Traveling with Manny is my best solution. He usually double-checks that I have extra everything. He also likes that.
“fast track” status, hehe. I joke with him about that every time. I will tell him, “I’m traveling alone; I don’t know him.” LOL.
What plans do y’all have for 2023? Anything exciting? You have a grandbaby coming, correct? How’s Bryan doing after the trip?
January 10, 2023 at 3:26 pm #36953Debbie MooreParticipant
@kygon Pre registering POC? Calling airlines now!!
January 11, 2023 at 9:49 am #36962
Oh no, @debbie, it only takes a minute, but they usually also redo it again when you check in. They like to plan in case they have several with oxygen. There are places w can’t sit with those, too. I’m sorry if we all forgot that one tiny step. I knew @kygon’s list would be helpful. Yes, I always have a copy of my doctor’s oxygen order just in case it’s needed. Years ago, it was mandatory, but then they seemed to stop asking for it. Better safe than sorry. When do y’all fly out? Wishing you both the grandest time, and congrats on celebrating a monumental milestone anniversary!
January 11, 2023 at 5:22 am #36957
@Debbie I hope you got your pre register all taken care of! We always print it out as well and bring the paper with Just In Case there is an issue.
@JenC, I saw all the weather reports it looks like California is under some rough conditions! I hope your not in any flood risk or power outages risks! Bryan definitely struggled to re acclimate to our 5000 ft after this trip, he was bed to couch to bed again for roughly 3 days. Haven’t planned any more trips just yet but San Diego this summer would be so fun especially if we go to meet up for dinner and drinks!
I actually have 2 grand babies due this year one in April (girl) one in May (boy)!! I am Over The Moon! our granddaughter will be in Texas so that is a for sure plan this year to go meet that tiny human and spoil her to bits. The grandson will be just around the corner so I know I will see him on the regular.
January 11, 2023 at 9:57 am #36963
Hey @kygon, I would always need several days recuperating after any trip. However, we didn’t live in a high elevation like y’all. If Bry is like me, it is all worth the “paying for playing.” But I know it sucks, and it is difficult for our caregivers to witness it repeatedly.
Yes, certainly, San Diego means dinner and drinks with you two. So cool, not one but two precious little ones. It sounds like the grandbabies will be keeping y’all hopping come April. Plus, one being so close, the parents can drop him off anytime. Hehe.
We are good, thanks; rain is holding up again until the weekend. Yesterday was a messy day. I hate getting out to go to my appointments. Good news, I didn’t melt. It’s crazy how much we need the rain. However, I want my sunny SD back soon. Thanks for thinking of us. Our friends in NorCal and more north were less fortunate. We only had street floodings for the most part. The beaches looked insane, too.
January 11, 2023 at 11:11 pm #36973
January 13, 2023 at 1:09 pm #36990
Hey @kygon and @colleensteele, thank you both. We are partly sunny and 68 right now. But we are supposed to get more storms and rain over the weekend. I’ll try again not to melt, hehe.
Y’all stay safe and warm wherever you’re at. The weather has been a bit crazy.
January 12, 2023 at 6:04 am #36974
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