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gil replied to the topic What Are Your New Years Resolutions? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
I liked this one from Pete Besio,
“So my resolution will be to continue to find things that inspire me and make me feel positive……”.
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gil replied to the topic COVID-19 and Me in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 weeks, 2 days ago
You tend to post interesting information, thank you Mark,
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gil replied to the topic Happy New Year & Best Wishes for 2021! in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 2 days ago
Happy New Year Charlene!
1 good thing that happened is I discovered and DNA verified a wonderful woman who is my daughter and I love her deeply in a special way and we are becoming friends and that is the best thing which 2020 brought me.
Best wishes to everyone, may God give you what you need.
gil
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gil replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
I am not on any medication but since last year I too have been getting headaches. Sometimes severe but most often the headaches go away after an hour or so, sometimes it comes back. I attributed the headaches to allergies and pandemic stress; it would not surprise me if IPF is contributing to my headaches.
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gil replied to the topic The Importance of Our Immune System in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 1 week ago
Mark Kozial,
Thank you for information. I will read it, it is fascinating stuff. I have one doctor telling me I have arthritis resulting from an autoimmune disorder, and my IPF doctors telling me i don’t have any autoimmune issues.
“it is important to note that inflammation is a symptom of pulmonary fibrosis and not IPF”
Isn”t IPF a type of p…[Read more]
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gil replied to the topic Afraid of the unknown in the forum Diagnosis Information and General Questions 3 months ago
Hi Jay,
When I found out what IPF was, I too felt pretty bad but today I feel more optimistic and value each day.
“I did the 6 minute test and my OX 5was above 95%. It was primarily 98-99%”
That is pretty good. Mine use to be that high now it is closer to 95%.
Good luck,
gil
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gil replied to the topic Consuming a Healthy Diet with IPF in the forum Healthy Recipe Sharing 3 months, 2 weeks ago
Karen,
“My biggest problem seems to be that I rarely seem to have a taste for anything. Other than chocolate, that is! HAHA!”
I love chocolate! I make it a point to try chocolate from different parts of the world, quite a bit of variation and it is all good. My favorite chocolate is from Oaxaca, the majority of people there are indigenous and…[Read more]
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gil replied to the topic Good News! PRM-151 Positive Trial results in the forum Clinical Trials 3 months, 2 weeks ago
Dave,
Thank you for link, it looks promising.
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gil replied to the topic Consuming a Healthy Diet with IPF in the forum Healthy Recipe Sharing 3 months, 2 weeks ago
Karen,
“I just simply often don’t feel motivated to cook because I have little desire for anything. Not to say I don’t get hungry, but that doesn’t often involve a desire for making and eating a balanced meal. What do you do then?”
I find that cooking helps me reduce stress, perhaps it is that by focusing on each step of preparation and cooki…[Read more]
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gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 2 weeks ago
Hi Charlene,
Yes, the arthritis pain is mostly on the extremities but the most painful part is above my ankle.
“There certainly is a relationship between PF and autoimmune conditions. I’d like to understand more about it….”
So would I. I too think that autoimmune conditions may trigger IPF and vice versa. I am going to give this more re…[Read more]
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gil and
Susan Howitt are now friends 3 months, 3 weeks ago
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gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 3 weeks ago
Susan,
Thank you for information, it is so interesting that a lung disease may trigger autoimmune responses. In my case IPF preceded the arthritis so you are probably right. Also, I never had allergies until a couple of years before my IPF diagnosis. I suspect I had IPF before the diagnosis and that the allergies also are consequences of IPF…[Read more]
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gil replied to the topic Family Member Refuses Medications in the forum Esbriet (Pirfenidone) 3 months, 3 weeks ago
Karen,
Thank you for nice words and not easily dismissing my perspective. I suspect age, having multiple health issues, and the probability of a successful outcome colors our view. I am 73 years old, if I were younger my perspective would likely be different. If I were 30 or so, I’ve no doubt I would go for any promising treatment even if it w…[Read more]
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gil replied to the topic Family Member Refuses Medications in the forum Esbriet (Pirfenidone) 3 months, 3 weeks ago
<div class=”role-participant bbp-author-role”>Katie Beardsley,</div>
<div></div>
<div class=”role-participant bbp-author-role”>Good luck and I get what you are saying.</div>
<div></div>
<div>Jason,</div>
<div></div>
<div>I am not sure I agree that it is a denial issue. Of course I do understand that in many cases it is. I was a Hospice…[Read more] -
gil replied to the topic exercise with problems breathing, heart racing and lower back pain in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 3 weeks ago
Wow, you all have an admirable attitude.
I was diagnosed with IPF around 2012 and I still don’t have the severe symptoms described above: you all seem pretty brave and your attitude is simply great, I don’t know that I could maintain such a positive attitude.
I do have arthritis, ankle, hand, fingers and lower back and it seems to be getting w…[Read more]
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gil replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 9 months, 2 weeks ago
Charlene,
“I don’t think getting COVID-19 as an IPF patient is a death sentence by any means, and I don’t think we should approach it as so (though I am not a physician). It could be bad yes, but I know of a few CF patients who have survived it. Having a plan in place for “what if” is a good idea…”
I had thought getting IPF was a death se…[Read more]
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gil replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 9 months, 2 weeks ago
Charlene,
I’m okay. My two daughters have me isolated. I am getting cabin fever but I am staying home, I have unfinished business with a daughter and I am going to do all I can to be around for a while. I do grocery shopping on line , it is so convenient I may keep doing it after this virus threat is over. the other positive thing is I find…[Read more]
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Nan replied to the topic Eliminating Processed Sugars from your Diet in the forum Healthy Recipe Sharing 9 months, 3 weeks ago
Terry thanks for the recommendation. I watched the movie today. It was good, love the Aussie accents lol. I have not been doing good. In my captivity ( AKA self isolation) I have been ordering bad food, baking with sugars etc. I have gained weight, and don’t feel as good as I should. I have to get back on board. I have started baking sour dough…[Read more]
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Nan replied to the topic Coronavirus Lockdown in the forum Living with Pulmonary Fibrosis: 50+ 10 months, 1 week ago
My son told me that is China they were not allowed out without permission. They were allowed to go to grocery store every 3 days but only one at a time and the stores were monitored to not have crowds. They are lifted now, they can come and go as they like. He is still teaching online as schools not open yet. Here in Ontario Canada many many…[Read more]
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Nan replied to the topic Eliminating Processed Sugars from your Diet in the forum Healthy Recipe Sharing 11 months ago
How is everyone doing with this? Me, not so good. I did not have any weight to loose but in the past 2 weeks I have been eating a lot of sugary treats and white flour and i have gained 3 pounds, now i need to loose weight as that put me in the over weight category. I really need to get on board. I have done intermittent fasting and low carb and i…[Read more]
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