[gil]

Charlene,

I am looking forward to seeing the subject photos, I can spend hours at a gallery, one of the pleasures IPF hasn’t stolen from me.

gil

 

[gil]

Charlene,

Sounds like a good idea to me.  As part of class on video and story telling, I did a video that aims at creating awareness to a serious problem facing veterans and the response was positive from other veterans.

I look forward to seeing your video.

gil

[gil]

I could not post photo from my computer drive so here is a link to the Red Rock photo, the place is near Las Vegas. My favorite place in that area is Valley of Fire, I love going there and camping under clear skies makes you feel connected to the universe.

https://photos.app.goo.gl/46i2oScCW20ON7By1

 

 

[gil]

Hi Charlene and Shaw,

First, I am about 500 miles from Las Vegas so it isn’t that close or that far.

Shaw, this is one of my favorite photos of Red Rock, I felt like it was a little oasis in the middle of the desert.

Charlene, my day is going good, best day in two weeks or so.  I’m sorry the weather is causing breathing difficulties, our illness is not a compassionate companion. I suspect March – May will be bad for me, it is pollen time and I know I will have breathing issues.

Yes, I will update you after my visit to the IPF doctors.  BYW The photo is near Shaw’s home.

 

 

[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.

[gil]

Charlene,

Promoting awareness is a good idea, I do photography and mix media art, there must be a way I can use art to create awareness, any suggestions?

I think a short video, 3 minutes or less, would be another form. I wish you lived closer, I could follow you and do a video showing the challenges  and the ways we respond to those challenges.

 

 

[gil]

Lauree,

Welcome and,

“I know that meditation and breathing exercises are suppose to  help us breathe better, but that does not help me when I can’t catch my breathe. I am terrified and can’t think about all of the techniques I have learned. Does anyone have any tricks.”

A friend who teaches Mindfulness gave me this trick and it usually helps me…..  When I get anxious or for whatever reason I can’t seem to focus on breathing techniques especially when my heart and mind seem to be racing,  I say “STOP!” – doing this usually returns me to a state of mind which is more receptive to reducing anxiety and improving  breathing.  When I say or shout Stop the image of a stop-sign pops up and I start controlling my breathing and I calm down.

 

[gil]

Lisa,

Welcome.  What kind of photography do you mostly do?  What kind of  photos do you like?  Over the years I’ve gone from action and people to night photography and shooting wildlife.  Since I don’t hike as much, wildlife now means mostly migratory fowl and birds of prey.

To help steady and take photos, a tripod and a remote will help.  There are different remote types, I have the basic one that has a usb cable connecting the remote to the camera.

Interesting you and Charlene mentioned coloring…. I love drawing and painting.  The IPF has made me stop using oil but I do use acrylic, if I paint.  Since last year my fingers don’t cooperate, the brain sends the signal but the fingers don’t cooperate.  I thought it was arthritis or something like that but if many of us with ipf are experiencing similar problems I better bring this up on my next appointment. The result is that I don’t draw as much as I did before. Another activity that old age or IPF is inhibiting me from doing.

 

[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.

 

[gil]

Hi Shaw and welcome,

You expressed similar symptoms that I’ve experienced and you sound like a private person and so am I, this forum is the first place/time that I have opened up about my ipf.

BTW, I was just in your neck of the woods, I have family in Henderson, NV. We went to the “B” and saw the lunar eclipse from there. I also shot a few shots of the strip.   The high altitude of the Sierra does does bother me, seems the breathing issue is particularly worse above 5000 feet.

Charlene,

I will look up the the numbers for you, I tend to forget them or perhaps I stopped looking at them last spring after my biopsy.  I noticed that in early 2017 the oxygen level had dropped to 94-95, it used to be 98-99, probably a lot less now. I see the pulmonary people next month for a follow up c scan.

 

 

[gil]

Charlene,

I am lucky, currently I am not using oxygen therapy, I just stop what I am doing and rest.  I am wondering  if oxygen will help me in places like Tioga Passs, the altitude is about 2.8 kilometers. That area is great for shooting the planets and Milky Way…. Last time I was there I was unable to do an easy walk, I’ll talk to my doctor about using oxygen at high altitudes.

My lungs are pretty shot and what doctors tell me is that I am not showing the symptoms normally found with people who have my condition. I do get tired easy and the high altitude is uncomfortable but I love the high Sierra.

I think I will start a journal and document health changes that may be due to IPF.  Until recently, I was doing quite a bit of denial but hopefully I’ll be honest with myself and be more accepting of what is going on.

 

 

[gil]

Charlene,

They won gold! They  were the best out there and the Americans were second. LOL, your mild temperature is way to cold for me.

“Does anything in particular help reduce this feeling for you?”

Mostly, getting warm and time and drinking something warm seems to help. Someone I know who has arthritis swears that a cream made from marijuana reduces the discomfort and gives him flexibility; unfortunately he didn’t offer any so I haven’t tried it. If it works for arthritis perhaps it will help with IPF, I don’t know but I’ll look into it.

I still drive to the store and take my grandson to soccer practice and games.  For long drives, my brother in law or someone else drives and we take frequent breaks; drives longer than a couple of hours do tire me and if I  stop the denial, trips longer than an hour are becoming fewer and fewer.

 

[gil]

Charlene,

Today I’m mostly watching the Olympics, Canadians are winning medals, my favorite was last night dancing, the Canadian couple looked real good.

Yes, I  have the same problem, particularly my fingers and that sometimes interferes with my photo shooting.

Sorry to hear about your freezing weather, hot tea always helps me.  Hot chocolate is also soothing. Our weather has turned colder, maybe it is northern winds.

 

[gil]

Charlene,

Thank you for information.

The easiest solution is to simply avoid using Word copy and paste, I can do that.

 

[gil]

This is more advice related to pneumonia but I think it applies to pulmonary fibrosis too.

Research show brushing one’s teeth and mouth care will inhibit bacteria from infecting lungs, in one study pneumonia was a problem and oral care, including teaching one how to correctly brush teeth, got rid of the problem and improved the patients’ quality of life.

https://www.blogs.va.gov/VAntage/45224/routeva-road-trip-preventing-disease-through-better-oral-care/

 

[gil]

Charlene,

“I wonder if this is similar to what your Doctor was referencing, or something totally different?”

I don’t know.  The doctor said “rapid decline” but I did not ask, I think I may have been in shock or something. Next time I will ask him.

I know what you mean about the flu,  I believe I recently had the flu but it may have been my allergies or even IPF symptoms…..  I am going to ask my doctor if there is a way to tell the difference, I suspect that regardless of what triggers my symptoms the “cure” is the same, rest and drink plenty of juice and water.

Nancy, Rick,

You both had it rough, Good luck with the medication and hopefully science will make advances in time to help us, especially all of you who are young enough to avoid the Senior Citizen title.

 

[gil]

Charlene,

Same problem happens with a text file, I also had a link and maybe that is what creates the problem.

How do we delete a post?

 

[gil]

Charlene,

“If you are comfortable, can you tell me (the forum) a bit more about the rapid decline you referenced? What did that look like for you, was it more frequent periods of shortness of breath or physical lung function decline? I hope it is okay that I asked you, it is something I’d also like to know”

The “rapid” decline is what the doctor predicted after three years, I don’t believe I am at this point. Yes, 2016 and 2017 I experienced not being able to do things I used to do but the decline isn’t rapid. Scans show my lungs are worse than a year ago but as  doctor tells me, I don’t yet show the expected symptoms.  I am lucky.

[gil]

For some reason I can not paste my response….

 

[gil]

Charlene,

I am still looking at different places, right now the coastal area I mentioned seems most likely.  I haven’t really looked at the housing market or the costs, and I also want to understand the plant life in the area, allergies you know.

[gil]

Alex,

Sometimes. On the right top of the post where by the word, “Reply #…”  sometimes the word “Edit”  appears, that is when  you can edit. I don’t always see the “edit” word .

I just re-posted after an edit, so sometimes you can.

 

 

[gil]

Alex,

Thanks, that’s a good price, the adapter is a lot less than a lens. Besides, it means I will be able to use my other Mamiya lenses.  Sometime in late March or early April I’ll do some macro shooting. Plants will be blooming and there will be many different types of insects, good subject matter for macro shooting.

[gil]

Good advice above.  The only thing I’ll add is take care of the legal paperwork that specifies your wishes at the end of the life cycle to include what is to be done once we pass away.  I did all this so that my family will not have to make difficult choices  such as what type of treatments I want and don’t want,  what to do with my body, how assets are to be divided, etc…  Doing this isn’t an indication that one has lost hope, one should do this simply because it makes it easier on everyone. Tomorrow morning we  might get into an accident which takes us to the end of life cycle, it would help everyone if we have taken care of all the legal stuff and made our wishes known.

The 3-5 years expectancy was  scary, the doctor said I had three good years and then a rapid decline.  It was the rapid decline that hit me the hardest. That was about 7 years ago and I am still walking and I am not taking any medication.  The three to five year span is based on an average, some people will last many years.  Also, there is science and so there is hope.

 

[gil]

Alex,

“Lots of times I force myself out of bed because I know once I get moving I’ll be OK.”

Yep, that’s me too.