[gil]

Charlene,

Mindfulness is a tool/way of life  that has helped me deal  with IPF and other unwanted feelings/sensations etc but most of all it has helped me become less judgemental and to stay in the here and now.  I would say the practice has helped me with the Racing Mind syndrome that seems to affect  many of us. I initially didn’t want to do the sessions (14 sessions) because my mind was so active and I didn’t think I had time to waste on silly things such as mindfulness.  Today when  I catch myself too busy to practice it is when  I know that I must practice it.  Other than devoting half an hour or more to it, I have found that I practice it when I cook,  shower,  and while doing other common activities as well as when I want to stop my mind from racing or going in different directions.  Mindfulness is something I keep learning about and what is so neat about it is that we go at our own pace and it brings peace even if it is only temporary. It really is a way of life,  another element we add to our life style.  Of course I had a great teacher, she is now working at the Stanford Medical center with women who are there for heart surgery etc…..

 

gil

 

 

[gil]

Charlene,

I only lay flat for a short time and with two or three pillows.  Sometimes when I watch TV and have to lay flat  I will also put a pillow(s) under my knee(s).

I find that tea,  non caffeine, helps reduce coughing, I usually drink a cup before going to bed.  I find that tea from orange blossoms reduces stress and helps me fall asleep.  Too bad my orange tree doesn’t blossom all year, sometimes I will take a sleeping pill but I try not using pills.

I hope all is well and that the MRI come out negative.

gil

 

[gil]

Charlene,

All of the above.

I am at a point in life where I simply ignore such comments,  people may mean  well or  they may be mean,  regardless I take such comments as stemming from ignorance and  I don’t feel I have to educate them.

 

 

[gil]

Charlene,

“What brings you happiness versus what doesn’t: I have to admit that I’ve never been good at putting myself first, however, in the last few months I’ve been committed to doing this. If I don’t want to do something, or if it is something that won’t bring me happiness, I choose not to do it. As all with IPF know, life is too short to be doing things that make you miserable. I wish I didn’t have to be diagnosed with IPF to learn this lesson”

Similarly, I have an “Absolute No List”  of things I will no longer accept such as:  tolerate gossip; be around people who are angry or negative; do things simply to please others when it isn’t something I want to  do; etc…  I got the idea for the No List from my niece who got it from a book by Cheryl Richardson…  We all have Lists of  goals we want to do and I found it helpful to also have a list of things that are no longer acceptable either because it increases my stress or because I end up doing something  not good for me or something that I would rather spend  the time doing something I like.

Also,  as Dave Wendy above, I do shorter term art projects and when IPF inhibits certain hobbies I replace the activity with something I can do.

[gil]

Charlene,

I have mostly Avoiders but my sister and niece are supportive and valuable friends.

[gil]

Joyce,

“We feel stigmatized I guess and it is totally wrong to feel that way. We have lived a good life, done many things for other folks, helped out those who needed it to move easier…Why not use the assists that are available for us now?  Let’s just stuff our pride and our feelings of inadequacy in our pockets and accept the help we are able to have and use it to help us”

Thanks for that comment.  There  are times  I know I ought to use a mask and  I don’t for the reasons you mentioned.  From now on I will use a mask when it makes sense, such as when I go to the flea market and there is dust and people smoking.  I have to ignore what people “might” think and do what is best for my health.

 

Charlene,

Until you asked,  I considered IPF as an illness but if I am honest,  it  is a disability and it has already changed the way I do some activities, e.g., I no longer go backpacking and when at high altitudes I do very little  hiking.  Now I am beginning to accept the fact I do have a disability and that as time goes by I will need more assistance – difficult to accept.

 

 

 

[gil]

Charlene,

While not as much as before IPF, I am still doing volunteer work and  it helps me from slipping into a depressed state mind which is easy to do you if I focus on limitations this illness brings. As long as I can help others I know I am still able to make choices … The biggest threat ipf gives me is becoming so helpless that I can’t make choices….

 

 

 

 

[gil]

I had not noticed it until my doctor pointed it out during our last appointment. As of today it hasn’t bothered me.  The shape of my fingernails are changing but I have not experienced pain.

 

 

[gil]

Charlene,

So good to hear you are doing so well, don’t forget the photos!

gil

 

[gil]

Charlene,

It seems part of our IPF is having periods of bad days and then we go on the upswing. What I’ve noticed is that those bad days seem to get worse for me and last a little longer and are compounded by other stuff we may have such as allergies or other ills such as the flu.  I also noticed that the sun still comes out the next morning and it is always a plus reading your column. Both you and Kim are inspirational, I am glad I ran across this forum.

I am glad you are going to Vancouver, it is in my bucket list.  Take many photos and share with us lessons learned such as what obstacles one encounters when traveling that are due to our IPF as well as solutions you discovered.

Enjoy your trip and keep us posted.

gil

 

 

 

[gil]

Kim, Charlene,

You are welcome and thank you for the kind words.

Charlene,

It sadden me to hear about the accident and your headaches and neck pain:  I wish I could do more than pray all turns out well.  Best wishes tomorrow and I hope you recover soon .

 

[gil]

Kim, Charlene,

I am not on facebook, maybe sometime in the future I’ll return to it.

Kim,

I shared your article with my “best friend” who has RP, retinitis pigmentosa. and it is causing her to go blind.  She is now legally blind and  currently there isn’t a cure.  We talked about how the issues you face are similar to issues she faces and perhaps these issues are common to all who have an incurable illness.  Maybe next time you visit this subject again you can call it “Diet And Exercise For People With An Incurable Illness” or something like that.  It can be an inspiration not only to people with IPF but others who struggle with similar outcomes from an incurable disease.

gil

 

 

 

[gil]

Charlene, Terry,

Interesting article and subject, Telomere lengthening.  Last week, I saw my primary IPF doctor and he mentioned the telomere and IPF research others are doing as well as his team’s research. I should have paid more attention and I will ask him for more details but he is basically looking at the problem as a cell division/repair issue.   Apparently the new angle they are working on is based on the notion that the number of times cell division/repair is fixed so their research is aimed at triggering further cell division/repair after the biological fixed number is reached.  I am interested in research but that day I was focusing on my tests results and the implications of his work.  I mentioned that his work is related to the “fountain of youth” – if science can trigger generation of cells and telomeres then you are talking about extending life.  The doctor smiled and said yes, that was an implication but the current focus is on treating IPF.  I will get more information the next time I see him.

[gil]

Depending on person asking, I usually explain it in one of two ways:

1.  It means my lungs are damaged and the illness will get worse until my lungs won’t work at all.  Doctors don’t know what cause it nor how to cure it; yet.  Doctors said I had about three good years (meaning very little change) and two years of rapid decline. That was seven years ago and I am way past that, thank God.

Or,

2.  It means that for unknown reasons I have scarring of the lungs and the illness gets progressively worse, there is no cure. The average life expectancy is 3 – 5 years, I am going on 7 years. Science will eventually find a cure and it won’t surprise me if this happens in my lifetime.

In my experience, the above answer is enough explanation. If people ask questions I answer and do my best to separate the science from opinion.

 

[gil]

Kim,

Thank you for the good advice and for the links, I will check out Dr Noah Greenspan’s work.

gil

[gil]

Kathi,

Thank you for your posting. I have a better understanding of the struggles caretaker experience and this will help me over the long run.   One lesson for me is I will have to be patient with my caretaker and others who assist me.  Currently, I don’t have a caretaker but I do have a couple of people helping me as needed.

Good luck with appointment,

gil

 

[gil]

Charlene,

I have a few more months before my lease is up but I am already searching.  Last year I went to Oregon and Northern California, I fell in love with this small town called Crescent City, near the beach and near the forests, in the winter there is quite a bit of rain so I will likely move to the Santa Maria – Santa Barbara area.

I will try the Salt Room/Spa and the inhaler too. I’ll let you know how that one goes. As far as the salt inhalers, there are several out there, any recommendations?  I also ran across salt lamps, do those work?

 

 

 

[gil]

This is another reason I ought to move somewhere along the Pacific Coast……

Form Aishia’s link:
<h3>What is Salt Therapy?</h3>
Humans have been using salt for therapeutic uses for thousands of years. Anyone who has spent a day at the ocean knows that salt-filled air has something special about it. Hippocrates, the father of modern medicine, used to steam salt to purify the air and the lungs.

In Europe, the ancient Greeks used what they called Halotherapy (Halo is the word for salt in Greek), for respiratory ailments. Cave rooms full of salty air have been considered therapeutic in countries in Eastern Europe for hundreds of years.

[gil]

Af,

I too hope genetic information will lead to better treatment outcomes, and hopefully in my lifetime.  Thanks for the information, I did not know IPF runs in families.

” It’s estimated that about 10% of PF is clearly familial”

Even if this is so, it is likely that environmental factors are what triggers the fibrosis.  We may carry a genetic predisposition and it won’t be expressed until it interacts with environmental factors.  A good question is what are the genetic factors that inhibit IPF, cancer, diabetes, drug addiction, etc….  There are people who smoke and drink and yet live a long time.  There is something in their genetics which inhibits gene expression of cancer and other similar deceases.

 

 

 

[gil]

Charlene,

“Have any of you been told that it is likely your IPF/PF diagnosis was due to the work environment/career that you”

I was exposed to Agent Orange, it is a herbicide used in Vietnam.  The Veteran Administration doctor who evaluated me said that it may be possible that my IPF resulted from exposure to Agent Orange but that it was possible something else caused it.  Recently I have come across a few cases where the court has ruled that given agent orange is a possible contributing cause, the judge has ruled in favor of veterans.   The doctor asked if I had ever used Round Up, a herbicide, i responded yes and she said that might be responsible for IPF, that is so stupid on her part. The same people who made Agent Orange are the same people who make Round Up yet she denied my claim.

 

 

 

[gil]

Terry,

“temperatures were 25 to 30, the humidity was 75% or higher and barometric pressure was at sea level with a clear sky”

Thank you for the information.  The place I am considering has an average temperature of 27, 66% and it is at sea level. Sometimes there is fog, e.g., May, but most of the time it is nice.  So, you have given me another reason to move.

Going further south eliminates the fog issue but I don’t want to live that far south, the Los Angeles/San Diego traffic is simply too much for me.  I am considering somewhere between Santa Maria and Ventura, California.

As for the tax deduction, I live in California  and the laws are different and I will look into it, it makes sense that this is a medical expense.

 

 

 

[gil]

Charlene,

“DON’T:

Try to protect others by not sharing your struggles. This is an incredibly hard lesson to learn, but one that is important. Your struggles are a product of your disease. Protecting others puts them in a position of failure when it comes to helping you: they cannot help you if they don’t know the reality of your situation”

Makes sense.

What about grandkids who are in college and out of town or grandkids who are still children or teens? They can’t help us, what do you think of “protecting” them?

[gil]

Terry,

“Apparently, if a medical condition can be treated by being in an improved climate, the expense or at least part of it, is a tax deduction”

This is something I will look into, thank you for the idea.

What do you think it was about the trip/location that helped you?   Doctor suggested I move to the desert during winter and the coast during summer.

 

 

[gil]

Charlene,

I love the sun and I get plenty of sunlight so I was surprised I too had low vitamin D. The doctor gave me a prescription similar to yours. Do you suspect low vitamin D has something to do with IPF?