gil
Forum Replies Created
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Charlene,
I live in an agricultural valley and there are many things that trigger allergies and aggravate my IPF. I discussed with my doctor ideal places to live given one has IPF. He suggested the desert during winter and coast during summer. Doc said weather that is too hot or too cold aggravates pulmonary issues. Of the two, he did recommend the coast, especially towns like Ventura and Oaknard which have nice weather year round. If I do move that way, it will probably be 15 minutes or more inland, weather is sunnier, no fog, and the coast is still close by.
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Charlene,
Allergies are better, thank you. I had a respiratory infection, I don’t know what triggered or caused it, it wasn’t fun. It almost makes me afraid going to indoors places that may be crowed, e.g., church, mall, theaters… Today I went outside and enjoyed a walk and did a little shopping. If tomorrow is nice, I will go for a drive and maybe run across some migratory birds and fowl.
I am interesting in all IPF treatments, especially stem cell based therapy, it seems to me this approach may lead to a permanent cure. I plan on learning more about it and I am willing to participate in stem cell studies.
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Ken,
Please tell us more about the stem cell therapy, are you part of a research group?
Charlene,
I haven’t noticed problems with toothpaste, if this changes I’ll let you know.
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Charlene,
I switched to products with more natural ingredients. I now use a hypoallergenic detergent, “0% fragrances, Dyes, Artificial Brighteners” and similar for other stuff. Sometimes I can’t help myself and I will use bleach and I can notice the difference it has on my skin and allergies. I now try avoiding all heavy chemicals, especially after reading how chemicals we use at home will damages our lungs, almost as bad as smoking.
https://www.sciencedaily.com/releases/2018/02/180216084912.htm
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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.
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You all,
My cough is usually dry except when allergies kick in, then the phlegm and running nose etc. Perhaps for some of us phlegm is a problem related to allergies, perhaps for me it is a combination of both allergies and IPF. I changed soap/shampoo, laundry detergent, etc and the night-coughing, etc went away.
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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
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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
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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
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Charlene,
The pulmonary doctors said if shortness of breath gets worse, to immediately call and make an appointment; if severe breathing issues to go to my local emergency hospital. The IPF medical team is about a two hour drive from my home.
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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
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Charlene,
Yes, I am interested. I rather type than write but sometimes I write, it just feels right to do so. Last year i was feeling pretty depressed when the doctors told me there was nothing else they could do that would allow me to continue doing activities i enjoyed. Writing helped, though one of my first “letters” I wrote was to God and I am glad mom will never read it, it was not a very nice letter. The anger is mostly gone, today I am grateful for what I can still do and I know my illness has physical reasons for it. What has really improved my attitude is discovering that this illness affects young and old, I am old so I feel lucky while it also saddens me to know young people can get IPF. Life doesn’t seem fair and I accept that.
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Charlene,
“For me, when I go to work, I need my lunchbox, my purse, my portable 02 concentrator (which has a separate trolley with wheels) and usually something for work, like a briefcase. I’m really struggling to carry all of this in now, and even if I get a little cart to carry it all around it, I still have to move it from my car to the cart. This is getting really tough for me..”
That is tough indeed, I think it is a good idea to make a post of this and I also think this would make a great column and a photo would be great; this can be part of the promotional video you are making.
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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.
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Charlene ,
Yes the flu is a problem, leaves me drained for two or more weeks. Sometimes I am not sure whether I have the flu or I am experiencing ipf symptoms, I suspect the latter is more likely.
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Charlene,
Not yet but I’ll try reading His book this summer
Mostly, I do photogrsphty/mix media, but there times especially when ipf impacts what I do, that I turn to writing, it seems to help.
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- I had to leave a religious service because of the insence, it took more than two weeks to recover, though I think the damage is still there, my cough is worse since then . Please consider adding insence to your list.
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Charlene,
Links to story telling project:
https://www.loc.gov/vets/about.html
and this one too, this project collects recordings, one of the Stanford university people collected the stories from our group. The stories collected are not restricted to veterans.
The instructors were: a professional photographer, an author that gave us writing exercises (I believe she works at Standford University) and an art therapist plus an intern.
Also, if some of your co-workers are graphic artists, a video using animation is very effective and that might be one of the best ways to present the data.
and veterans and other stories
https://storycorps.org/listen/?collection=veterans-stories
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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.
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Charlene,
“although the water is pretty clean, there are occasions where ‘do not swim’ signs are posted due to E.coli exposure”
I am sorry to hear that, so far I have not seen such signs, I hope people stop polluting our waters. As for the sandstorms, they do occur but not where I live, I live hours away from the desert so the sand doesn’t bother me. You guessed correctly, my favorite time is spring, as my condition worsens winter may become my favorite season. I really like this time of the year because Orion is visible and since childhood I have loved looking at it, especially with my telescope. It has been over a year since I stopped taking my telescope, I can still carry the weight but it is too tiring so I leave the telescope at home. I should sell it as I am unlikely to take advantage of it..
PS, how do you post an image, I tried the image button but it didn’t work for me when I used my computer drive as the “source” – must the image be online?
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Charlene,
I did not wear a mask, it wasn’t windy where I was, but it was very windy not far from me, I could see the dust storm but it did not affect me. It was spring so it wasn’t hot either, Death Valley can get very hot during the summer and sometimes the wind is so bad the sand may actually damage your car’s paint, I don’t get out of the car when that happens. Also, on windy days one can leave the valley and go to higher ground and avoid the sand storms. I usually like visiting the desert in the spring and sometimes I am lucky and the desert is blooming with flowers and that is a treat.
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Charlene,
Thank you and tell Bea she I like her work, there were two photos I really liked, my favorite photo is Fracted-Egret, I tried leaving comments but you must be registered, I’ll do that sometime soon. The sandhill cranes is my second favorite photo. I have never seen a bald eagle in the wild, she has some cool shots of that magnificent bird, all were excellent shots.
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Charlene,
Actually, the class was on story telling and it was part of a larger project getting military veterans to tell their story…. I believe that at some point in the future the Library of Congress will create cross references to those stories. The class was at one of the Veteran centers and sponsored by some wealthy dudes. For the story telling project, I’ll find a link for you. Each student had a different story, all had war experience, some were young females who fought in Iraq and most of us were old guys from the Vietnam war. We students would view each others work and offer constructive criticism. The teachers were guides and they mostly allowed us to teach one another. All of the students had some art experience. Some were poets or writers and the rest of us had some background in the arts, mostly photography. For my story I used paintings and photographs to complement the narrative, others used poetry, some did not use video but did do audio recordings. It was intense, fun, and I made friends with some interesting and eccentric people. The young female veterans taught me a new way of looking at women and one of them remains my friend.
So what I am trying to say is that yes, having patients of different ages as you suggested on another post, is a good idea because it gives different stories yet all of us with IPF have a common story too, blending the two will be fun.
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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”