Why You Should Consider Joining Our Online Forum

[gil]

“It can reduce feelings of isolation and help build community”

Worth repeating, the isolation has been an issue for me , especially as “friends” stop inviting me to things I no longer do because of my ipf.

 

[Charlene Marshall]

Gil, I am so sorry to hear that this has been an issue for you, and it is something I can relate to as well. I used to actually be the one within our social circle that coordinated time together with friends, and I don’t have energy to do this as much now and thus, we don’t get together as often anymore. It does hurt to think this is the case, and I’ve actually written a few columns about it. I am very thankful for the friends who have stuck around though, and who still initiate special things for us to do together. It just makes those times more meaningful!

I sure wish we lived closer….

Charlene

[gil]

Charlene,

So do I. You have inspired me and last night I decided to do a short video of the typical experiences an IPF patient faces. I want to do this video but not me as the subject.  If you were closer or if things go well for both of us, I can  fly to where you are and do a short video of your average week.  I want to finish the video before end of summer and I rather use a young person who is working than an old guy like me.

[Charlene Marshall]

Hi Gil,

I really think this sounds like a great initiative! Think of the awareness that it would raise, such a neat idea. Wouldn’t it be awesome to include PF patients of all ages in the video, to really showcase that this disease is not just age-specific, as research might otherwise suggest? I know it is primarily a disease that affects people who are a bit older, but there are exceptions like myself, and no Aishia as well as she is only 40. It would be so great to release for September, which is PF Awareness month! I’ll try to think of some specific content that might be particularly good for a promotional video, and if things go well for us, perhaps we could consider this in future. Maybe Pulmonary Fibrosis News could even help us generate some ideas? There are some brilliant minds behind the operation of this site and minds who are very knowledgeable about videos/online promotion/social media etc. Lets keep it in mind! 🙂

[gil]

Charlene,

So many good ideas and so fortunate you have access to professionals in video and promotional media.  It has been a long time since I missed work, but your comment, “There are some brilliant minds behind the operation of this site” triggered a sense of nostalgia, I worked with some brilliant people and that part I do miss.  Not only did we discuss the informational systems we designed and implemented but we had many discussion about weird stuff like cyborgs, artificial intelligence, and how a supreme being, e.g., God, would use math to paint creation, to how one cooks the perfect cookie.

I do believe a video can help generate awareness.  The most difficult thing for me is focusing, there are so many good ideas but as Steve Jobs reminds us:

“People think focus means saying yes to the thing you’ve got to focus on. But that’s not what it means at all. It means saying no to the hundred other good ideas that there are”

[Charlene Marshall]

Hi Gil,

Your response and thoughts are always so appreciated, thanks for sharing. Maybe if we could do some brainstorming, I could then connect us via email to Pulmonary Fibrosis News about how we could utilize the talents of ours, skills and passion to do something to raise more awareness for IPF.

I can totally relate to how wonderful it is having colleagues who are talented and share the same passions as you. I love my colleagues, and one of my biggest fears is having to stop working with them. They have been able to make accommodations to support me at work, which I’m very thankful for but I know it will come to a time when I cannot continue to work, although that will be a really devastating time for me.

Maybe start writing your ideas down in a book to get some focus? Really, “sky is the limit” because we could do so much potentially. I’m eager to hear some of your ideas, and I’ll think of some as well. Any exciting plans for the weekend Gil?

Charlene

[gil]

Charlene,

“but I know it will come to a time when I cannot continue to work”

You are so young that hearing this is heartbreaking.  Won’t a lung transplant restore your health to pre-fibrosis condition? I am not familiar with lung transplants, I feel to old for one so I don’t keep up with that type of news.

I see that science is making progress using genetic therapy, hopefully this and other scientific advances will provide you with more treatment options in the very near future.

In a very real way, we are close neighbors, the internet gives us that capability so we can easily share ideas and even share a virtual cup of coffee or tea.

For the weekend, I want to spend a day or two with my grandson. A couple of weeks ago we had planned on spending my birthday together, we were going to Yosemite but I was not up to it.  We may go to San Francisco and catch a play or go to an art or science exhibition. I’ll see what my grandson wants to do. What will you be doing?  I hope it is not work related. Taking time off to do nothing or do something fun is part of self care.

 

[Charlene Marshall]

Hi Gil,

Thanks for your reply to my recent forum post.

Yes, accepting that someday I will lose out on my ability to work, even pre-transplant is one of my biggest fears. I love my career, colleagues, managers and families that I have the privilege of working with. A transplant absolutely should restore my health to pre-fibrotic times, and I will qualify for one yes. Discussions are certainly heading that way, although I’m not quite at the physiological decline that warrants evaluation yet. This is good, because as we know, transplants aren’t the ‘perfect cure’. They absolutely can help, but if I’m honest, I unfortunately have a few  friends (about 5) who have all had transplants and either died within 2 years of them, or who have required a second transplant. Some of them who have received a second transplant have needed this just due to bad luck. For one friend, her respiratory failure 1.5 years post transplant doesn’t seem to be caused by rejection or any type of infection…her new lungs are just failing. It’s scary because the prognosis after a second transplant is significantly reduced, down to about 2 years. Anyway, long story short: I am glad I’m not quite there yet, but yes I will be.

I hope science and research comes leaps and bounds for all lung conditions, but particularly in the treatment of IPF, in the next few years! It would be amazing to see gene therapy being successfully used in the management of this disease. It is exciting to think of all the possibilities, I just hope it happens quickly…

Yes, I agree about the power of the internet and connecting people. It is really amazing to be able to have a place like these forums, where patients can come together and connect about IPF and just life-in-general issues.

Those weekend plans sound wonderful. I would love to add San Fran to my list of places to visit, enjoy! How old is your grandson?

I did a bit of work today, but not too much and although the weather is beautiful and sunny here (albeit, still cold) I am finding myself rather tired today so I have mostly just spent time around the house resting and relaxing. I did have a wonderful day yesterday though, and I am sure that is why I am tired! I spent the day (12 hours) crafting with my aunt and two cousins at a fundraiser for the heart health center at a local hospital. It was in memory of the host’s husband who died suddenly of cardiac failure last year, and she honoured him in so many beautiful ways (ie. sharing his favourite meals with us throughout the day). It was a really beautiful day and no doubt that is why I am tired. 🙂

Hope your weekend has gone great!
Cheers,
Charlene

 

[gil]

Charlene,

If is sunny here to and cold.  The temperatures are dropping, tonight I will have to cover plants etc, to prevent frost damage, no rain an that to me suggests further drought.

My grandson is 13 years old, the other four grandchildren are females and range from 4 to 27 years.  If you ever do visit San Francisco I hope we can share a cup of coffee.

It seems you had a good weekend, and I agree, that is a good way of honoring her husband.  You are a busy young lady, your job and your volunteering is more than a full plate,; but I understand, sometimes doing what we like will tire us but the good feeling we get is worth getting tired. After I retired I begin doing volunteer work, less now, and it was very uplifting even if at times it was tiring .

I pray science comes up with some treatments that will help all of us, especially young people, sometimes life seems unfair  and I have to keep reminding myself of all the good things that also come our way.

 

[Charlene Marshall]

Hi Gil,

I wish we could swap weather with you, even for a brief moment as it is raining here tonight! So much so that the roads are flooding, and we’re expecting 3 straight days of rain ahead now. Our weather has been so bizarre ranging from -20 degree temperatures to +13 tomorrow (unseasonably warm for February in Canada) plus excessive snow and rain. Unfortunately, I think we’re all starting to see the impact we are having on our planet. I hope you get some rain so that the draught ends for you.

Wow, what a wonderful age range your grandchildren are. Such fun to spend time with them I’ll bet? 🙂

Yes, if I ever visit San Fran I’d love to grab coffee. It is one of the places I’d love to attend as it has always been a goal of mine to walk across the Golden Gate bridge. I can’t imagine how it feels to be suspended and surrounded by nothing but beautiful water. The Brooklyn Bridge in NYC is amazing, but I just love seeing pictures of the Golden Gate bridge too! Have you ever walked across it?

It was a busy weekend, but very therapeutic and I needed it. I spend sometime ‘offline’ too which was nice and now I feel re-charged and ready to tackle the week. Today was a holiday here in Ontario (Family Day) so I stayed in my pjs and spent time with my dog. I forget if I have asked you this already, do you have any pets?

Me too re: science. I sure pray that they are not far from a cure for IPF that isn’t transplant, as this is a great solution for some, but not an option for many. Plus, there are so many risks!

I hope you’re having a nice evening Gil 🙂

Charlene

[gil]

Charlene,

Yes, it is fun spending time with them, though now I spend most time with my grandson, he is the only one living here, the other grandkids are in college or live in Southern California.  No pets today, my dog died and it broke my heart. There is a lake behind my place, I get egrets, cranes, Canadian Honkers, and different migratory fowl, so in a way I have many pets.

Yes I’ve walked across the Golden Gate Bridge, last time was a few years ago but I was there in November.  I never tire of going to that area, here are a few photos of Golden Gate including a couple from my last trip.

https://photos.google.com/album/AF1QipPxS90shsjq9HbKuAezAsvzCzByUSlSkDtgsVeD

 

[Charlene Marshall]

Hi Gil,

Thanks for writing! That is really wonderful that your grandson still lives close by and you can spend time with him. I do wish my grandparents were in better health and we had more time to spend together. Unfortunately they live quite a distance from me and I’ve been pretty reduced to seeing them only a couple of times per year. It is likely a gift to your grandson, more than you know, that he can spend this time with you 🙂

That is my biggest fear: when my dog dies. I have a two year old Golden Retriever who I love more than I ever thought possible. She is my greatest comfort, the one who makes me smile most and I really would be lost without her. I have a cat too, but she just doesn’t measure upto my dog. It is going to break my heart when she does….if only our pets could live forever!

Can you try the link again for me? It came up with a 404 error and I would love to see them! If it doesn’t work, you can email me a few at: [email protected]. This is something I’ve always wanted to d and I know I’d love seeing the photos. Thanks Gil!

Charlene

[gil]

Charlene,

 

Charelene,

Please try this link:

https://photos.app.goo.gl/PHhjBY1oxPVPEmWJ2

I am getting ready to go see doctor, I think I have the flu again or I am experiencing IPF symptoms, hard to tell.

Yesterday was the coldest day of the season and breathing the cold air bothered me. Well, off to the doctor’s office, it will be my regular doc and  not the pulmonary doctors.

gil

 

 

 

[Charlene Marshall]

Hi Gil,

Thanks so much for sharing this link with me. I am going to check it out after work tonight!

Oh no, I am so sorry you aren’t feeling well! Goodluck at the Doctors – what did they end up saying? I hope it isn’t disease progression and is something that can be treated quickly. Thinking of you.

Charlene

[gil]

Charlene,

It was mainly allergies, thank you for asking.  I did get an inhaler, yesterday I used it for the first time, seems to help a little.

gil

 

[Charlene Marshall]

Hi Gil,

Oh I am so glad! I was worried it was the flu or something, which I know people can recover from but it still is unpleasant and is always a risk for those of us with lung diseases. Are you feeling any better overall? Glad you got an inhaler to use and that it is helping a little bit.

I got your email, thanks so much for sending that back to me and I’ll reply to you tomorrow. 🙂

Charlene

[gil]

Charlene,

Yes, I am feeling better. And today I will spend time the day with a good friend. We don’t have anything planned but I expect we will have a nice time.

gil

[Charlene Marshall]

Hi Gil,

I am really glad you’re feeling better and hope your day with your friend was wonderful! I really enjoy quality time spent with good friends now a days, even if we don’t have anything planned. What did you do together?

Charlene

[Lesley Scheerle]

Charlene suggested I post my ‘sweating ‘ problem in a general forum – I hope this is the right one. About 8 months before my diagnosis I began to notice I was sweating a lot just from ordinary daily living. My sister who is a nurse said it reminded her of of the Cystic Fibrosis kids who sweated just from the effort required to breath.  I’m not that bad yet, but it is a problem. Anyone out there have the same problem? I’d love to hear that I’m not the only one.  Lesley

[Charlene Marshall]

Hi Lesley,

I’m so glad you made the post, and hope some folks reply so you have some more insight based on others’ experiences. Some people may reply here as under this “thread”, which is for the discussion topic of Why You Should Consider Joining Our Online Forums. However, to make your question more visible for people on the forum, I created a new topic called Excessive Sweating and pasted your question verbatim in there. You can find it here:

https://pulmonaryfibrosisnews.com/forums/forums/forum/join-discussion-welcome-pf-ipf-patients/

I hope people spot it easier there and can share their feedback and thoughts with you! I’ll keep a ‘pulse’ on whether or not we’re getting replies, and if we aren’t, I’ll share it on our Facebook page (Pulmonary Fibrosis News) anonymously and paste responses I get back to you on here. I hope that might be helpful 🙂

Have a great day!
Charlene

[gil]

Charlene,

Yes, I felt better and my friend and I had a lovely time, we spent most of the day shopping,  I spent about 20 dollars and she spent over 600 dollars,  maybe it is a gender thing. It takes me a few minutes to choose a pair of shoes, it can take her half a day.

 

[Charlene Marshall]

Hi Gil,

I am really glad to hear you’re feeling better and that you had a great day 🙂

Your comment about choosing shoes gave me a good chuckle on a dreary day – thank you for that! I am similar to your friend, I could spend all day choosing shoes…. or bags, bags are definitely my thing. I hope you have a wonderful upcoming weekend.

Cheers,
Charlene