How can we support and make the rest of 2023 your best half yet

[Colleen]

Great topic FWW!

As you know, my husband passed away. We have celebrated his life at a memorial in WA and another in WI. Now I’m focused on moving to NJ so I can take care of my parents.

My hope is when I ring in 2024 I will be settled and making progress dealing with grief while living a full and as happy a life as possible.

Also praying Cullen will be settled in with a new team of doctors in NJ and that they will be taking excellent care of him.

I’m all about appreciating every day I have but in all honesty, I wish I could blink and this year would be over.

[jen-cueva]

Hi @colleensteele, I empathize with your anticipation for the latter half of this challenging year. It’s truly disheartening to imagine your and your boys’ difficulties.

With hopeful anticipation, may chapter 2024 bring you and your boys much brighter days. Although you appreciate every moment, I understand your longing for this year to come to an end.

Please know that you remain in my constant thoughts and prayers as you navigate this new season, all while coping with the loss of Brian. You hold a special place in my heart, dear friend and FWW!

We stand by you and your boys as you embark on this new journey alongside your parents in NJ. How are your parents coping with this new chapter?

[Colleen]

Thank you @jenc. Cullen has made the decision to move out to NJ before me so he can get his computer and WIFI set-up and start making appointments with whoever his new medical team will be. He starts on-line classes on August 21st and would like to be in NJ by Aug. 9 or 10.

I won’t be moving until my WA house is cleared out. That is going to take some time. I will probably be September when I move out there.

So many emotions going on right now.

[jen-cueva]

Hi @colleensteele, it sounds like Cullen will be heading out to NJ soon. How is he feeling about that so far? I know many emotions must be ongoing with you all at your house. But it doesn’t surprise me that he is going to get everything set up and all in place before school starts for him next month.

Your parents must be excited for you both to be there. Although, I know they don’t like the circumstances beginning the move. But so many new adventures for all of you are ahead.

How long did you say you’ve been in that house in WA? It’s been over 15 years. You probably have so much in the place that it will be challenging to decide what to save and what not. When we downsized to our two-bedroom condo here, it was not easy to determine what to keep. But I chose the less clutter I have, the better I feel. It has been somewhat freeing, if that makes sense.

For me, the small moments mean the most, so those are the things I decided to keep first. Then it went based on how much space was left. I started with clothes, then kitchen stuff since I enjoy cooking.

Please know we are here for you, Colleen. I wish I could fly to WA and help you do these tasks. But I feel we would not get much done with our chatting. Hehe.

[Colleen]

@jenc well, Cullen is going to have to cancel his flight and schedule another time. Our home has been hit for the first time with Covid. We are pushing through it but obviously keeping a close eye on Cullen.

We have been in our home 20 years. I plan on renting a small uhaul so I’m going to have to be disciplined and get rid of a lot!

[Vanessa Vaile]

I have goals (the usual suspects) but pathways remain nebulous — moving forward though, a few concerns eliminated. It’s still complicated. In the meantime I’m taking Noah Greenspan’s online Ultimate Pulmonary Wellness Bootcamp for the structure — focus on breathing and getting back in the treadmill habit.  Nothing close enough to do in person.

No major moves at this time, cutting back on some volunteer commitments. Making it through the summer without overheating. Another zoom would be cool.

[jen-cueva]

Hi @vanessavaile, I relate to having goals and taking baby steps to get there. You’ve endured so much this year with medical complications. It’s essential to keep moving forward, as it sounds like you are doing.

Dr. Noah offers an excellent online pulmonary rehab program. This primarily benefits those like yourself who cannot go in person.

You’ve always had a ton of volunteer tasks, so I’m proud of you for cutting back there to put your health first. And with this horrific heatwave this year worldwide, not overheating is a huge win this summer.

I have mentioned another Zoom meet-up meeting with our leadership. Hopefully, this will be something we can plan again soon.

Take care, Vanessa. We are here to support you as you continue to push through. Thanks for sharing a brief update, my PHriend.

[Debbie Moore]

My husband, Wayne, has made some better health decisions and goals, so I’ve been able to jump right in and join him.  We now go to the gym twice per week and have cut our portion sizes.  He, of course, is dropping weight by the minute and I am not.  But still it is a good life style change.  To add to that change, when we were in Charleston, SC last week, we bought a lake house.  We close on August 15th.  I will be busy buying linens, dishes, etc.  Very excited.  My main goal is to fish.  I see it as a place to totally relax.  The rest of the year looks good, if I could just do something about those doctor appointments!

[jen-cueva]

Wow, @debbie, congrats on that lake house! We should have a PH meet and greet at your lake house. That would be awesome, hehe.

Plus, I love that you and your hubby are working on these new goals with the gym and cutting portion sizes. Manny is working on this, too. But I need to increase my food intake, so my medical team thinks. I believe I am okay with my weight.

But, working on my goals, I continue to try and do a light workout 2-3 times per week. My goal has been twice per week, and I’ve made that all except the first week of this month.

I grew up fishing, so that will always be a fun memory. I enjoyed fishing with my dad and late stepdad. I miss those fishing days. We may go next time I visit my dad, and it’s not too hot. He also has a pond on his land that I want to build a small mini cabin behind one day.

Now, when you figure out ways to get rid of those doctor appointments, let us know your secrets. I look forward to hearing about the lake house adventures. Because you owned a kitchen store, I know it will be so cute! It sounds like you’ve found your next adventure after selling the store. Thanks for sharing, Debbie!

[Debbie Moore]

@jenc I would love a PH meet and greet!  Just let me know when!

[Colleen]

@debbie that is such good news all around! Great job with the life style changes and WOW regarding the lake house! Oh my gosh, I’m picturing a lake house we stayed at in the Poconos with my parents about 22 years ago. We rented it during summer and fished a lot! To this day it was one of my favorite vacations. So hearing that you are going to have that experience all the time…I am so happy for you!

[Debbie Moore]

@colleensteele I wouldn’t say all the time, we will bounce from our home in Mount Airy to the lake house throughout the year.  But it is nice to know it will always be waiting on us. Once Wayne is officially retired we will be able to stay there as long as we want.  I’m excited.

The inspection was done today so there are a few items to address.  I think the deal will definitely go through.  We already have a trip planned there for October!

[Vanessa Vaile]

@jenc ~ my reply wouldn’t post so I sent you a copy.  I’d like to get back to posting more regularly but seem to get bogged down.

[jen-cueva]

Hi @vanessavaile, again, my apologies for your trouble posting on Friday and my late response since I was off.

Vanessa updated, “I found Noah Greenspan’s YouTube videos from before he started the online pulmonary rehab program or the Pulmonary Wellness Foundation at a time of desperation, a year or more before the confirmed PAH diagnosis at National Jewish Health. I dare say they were crucial to my keeping going until then. The online rehab wasn’t free until he started the Foundation, and not something I could afford. At this point, feeling like I have to learn how to breathe all over again; it’s just the ticket. This week I passed the halfway point and can feel the difference.

Yes, some things are still worse than a year ago, but I’m getting better tools to manage them now. And another bright point — I started down titrating Uptravi. Ineoc and the nurse specialist that down titrating was better than skipping doses on bad days, which I would otherwise keep on doing.”

We are here for you, Vanessa, and looking forward to seeing your posts more often. I’ll let our tech team know of your trouble posting.

[Vanessa Vaile]

Thanks… does not help having ongoing computer issues on my end. There are other PH related frustrations too. Could we call them phrustrations? More later– I need to work some of them off on the treadmill before the day warms up more.