When was the last time you picked up a good book?

[Fran Boston Reichel]

I as an avid reader at one time, but haven’t done so lately. I’m going to find a good book to read starting tomorrow. I have fatigue as one of my main symptoms so I have to intentionally pace myself daily.

[jen-cueva]

Hi @franboston, I was an avid reader but had let it slip away with managing PH and life in general. I, too, am working to try and read more. Even if I read 10-50 pages daily several times per week, that’s progress.

Do you prefer reading a hard or soft copy book or on an App like Kindle, etc.?

[DeLois Tweedy]

I used to be an avid reader as well. But it’s been a while since I actually read a book. I find that cooler weather and wintertime are my favorite times to read books. Something abt the feel of a book in my hands and getting immersed in the story is very therapeutic for me. I especially enjoy it when I have to sit and rest – it takes away the boredom and temporarily takes my mind off my troubles.

[jen-cueva]

Yes, @deetweedy, in a corner with a warm and cozy blanket on a cool or rainy day, is perfect for reading a good book. Like you, I prefer that book in my hand. Maybe a mug of hot cocoa or tea to sip on and my fur baby napping beside me. Aww, I’m picturing that already.

Let us know what books y’all find that you enjoy. Others may enjoy reading it, too.

[jen-cueva]

Yes, @deetweedy, in a corner with a warm and cozy blanket on a cool or rainy day, is perfect for reading a good book. Like you, I prefer that book in my hand. Maybe a mug of hot cocoa or tea to sip on and my fur baby napping beside me. Aww, I’m picturing that already.

Let us know what books y’all find that you enjoy. Others may enjoy reading it, too.

[jen-cueva]

I’m sharing this here for our newest member, @jeanniedimauro. She shared an update instead of a “reply.” Jeannie, I wanted to make sure others wouldn’t miss your comments.
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If you read a post and hit “reply” at the bottom, a text box will open for you to type your response. Let me or @colleensteele know if you need any help. We are happy to help anytime.

Jeannie shares, “I’m still unable to read without a magnifying glass… which isn’t very efficient… my left eye is still a mess with post-herpetic something or other after shingles… growing very weary of dealing with this. 🙁 I did have a friend pick up a big print edition of Diary of Anne Frank which I read many years ago, but am enjoying reading it again. I also liked Larry McMurtry’s early works and ordered his biography, Larry McMurtry, His Life.. it comes out mid-September. Anyone who enjoyed The Last Picture Show, Lonesome Dove, or any of McMurtry’s books/movies might like his biography. Except for medical appointments I have not been outside my home since May 18th… could not read during most of that time, but reading in my comfy air-conditioned home sounds preferable to the alternative… doing ANYTHING outdoors in all this heat. 🙂”

[jen-cueva]

Hi @jeanniedimauro, how kind of your friend to bring you the large print of Anne Frank. Have you tried listening to books on Audible? Many enjoy it, but I’ve yet to try it.

I hear you about that heat out there. I don’t miss that heat in Texas at all. I know you have similar heat there, too.

Wow, stay indoors in that AC, Princess. That heat is horrific this year, worse than previous years. Or, I am just spoiled living in SD now. Hehe.

[Darla McCollim]

I understand the fatigue, I’m blind in one eye and my arthritis won’t let me hold a real book. A new book was truly a sensory pleasure for me. But I have to deal with my reality. The joy of audible books. I’m embarrassed at how many I have but consume them as fast I buy them. Some I get for free or at a reduced rate.  I escape into my world of fiction and fact and have never looked back.

[jen-cueva]

Hi @darlarayne, I’ve heard many in the rare disease community prefer Audibles. This works for their limitations, whatever they may be. It’s fantastic that there are things that those who are blind, like yourself, can use to continue their love of books.

I relate to it as an escape. It can be therapeutic to get lost sometimes, right? Thanks for sharing.

[Colleen]

Like @franboston I was once an avid reader but haven’t been for the past decade. This delightful pastime got lost in caring for my son and husband. I’m hoping once I get settled after my big move I will make time for reading again. The beach should help me keep this promise to myself.

@darlarayne my mother-in-law was legally blind and loved using audibles! When my husband’s health declined he started using them too. Because I love books in hand I couldn’t imagine enjoying them myself but I started listening along to my husband’s stories while caring for him and found myself getting wrapped up in them. Until I really make the time to start reading again maybe I should consider some audibles.

[Darla McCollim]

The best thing is about audible books is I can chose to sit and relax or walk around and putter. I have my comfort books when I am anxious and listen to over and over again. They take me from my pain. Great for driving company too. You can borrow from libraries or online Audible like me. There are some great stories available on podcast forums.  I love JB Robb aka Nora Roberts in death series, just finished book 57. Great excuse to finally do some classic novels you always wanted to read with some great narrators.

[jen-cueva]

Hi @colleensteele, I’m thrilled to hear that you’ll be picking up reading again, something I know you truly enjoy. Once you’ve settled down, I hope you won’t find yourself slipping back into the role of a full-time caregiver for your parents and instead prioritize some much-needed self-care.

My dear friend, you’ve endured so much, and I eagerly await the next chapter of your journey in NJ. However, I can’t help but worry about you now, too. You’re a natural “doer,” and caregiving runs deep in your veins.

Perhaps now is the perfect time to start curating a reading list. I understand don’t have free time, but compiling this list can give you something to look forward to once you’ve settled. I’m sure there are titles that you’ve been longing to read. Please do keep us informed about what’s on your list as well.

[DeLois Tweedy]

Darla, I have thought about audible books, but never have tried it. I am the type that likes to take music with me as I putter from room to room. But I also very much enjoy books. Maybe I’ll try audible books! That way I can immerse myself, as you said, while puttering, relaxing, walking on treadmill…. You’ve given me some ideas and a new way to think about ‘reading’. Best of luck to you, and enjoy your audibles.

[jen-cueva]

Hi @deetweedy, I also put music in the forums and do things around the house. Recently, I have started listening to a few podcasts at times, too. But IDK about books, I know many enjoy it. I feel I need that book in my hand and would miss it.

If you try Audible, LMK how you like it versus music.

[Valerie]

Hello everybody!

How many difficulties do many of you have to overcome when trying to read a book! It’s very sad. I sympathize with those of you who overcome problems just to read a good book. I can’t always read myself, too. But if I can, it’s good.

I appreciate the time to read and try to choose the best books. I like the books of the Daniel Keyes. I really Like “Flowers for Algernon” and “The Minds of Billy Milligan”. Three years ago I read “The Touch”, at that time this book was just very relevant. I was on a trip and bought the “Unveiling Claudia” and “The Asylum Prophecies”. I didn’t know these books existed. I really want to read this.

Now I’m reading “Mary Barton” by Elizabeth Gaskell. I like some English novelists, such as Jane Austen, Anne Bronte, George Eliot and Charles Dickens. I read the books of these writers gradually, because there are not so many of them. I recently bought a “Wuthering Heights” by Emily Bronte, and I really want to read it for the first time.

There are so many wonderful books in the world. I wish we could read a lot of this!

[Colleen]

@Valerie , you have an impressive book list. I love the classics. They are like an comfy sweater. I love being embraced by them!

[jen-cueva]

Woe, @Valerie! I’m impressed but also embarrassed by your avid reading habits. The books you mention sound interesting mixed with some classics.

Have you been able to read more or do you use Audible or another audio book source?Thanks for sharing. I have three books I have had simnce Christmas and almost halfway through one, strated one, and the third is on the bottomn of the list.

Now, if I could stay fovused and still more, I would read more, like before. Like some mention, I enjoy reading as it takes m,e away from reality. Hehe

[Jane Armstrong]

I do a fair amount of reading, partly because I belong to a book club. I read consistently at bedtime. It takes my mind off what has happened during the day and gives me something different to think about. It helps me to fall asleep, too – sometimes with the book still in my hand. One book that I have often gone back to is The Book of Joy. It is a week long conversation on the meaning of joy with the Dalai Lama and Bishop Desmond Tutu. They met for a week in 2015 for this conversation which was facilitated and edited by Douglas Abrams. It ends with a section called Joy Practices – something I have needed since getting PAH. Two other books that I enjoyed fairly lately were The Last Green Valley by Mark Sullivan and The Midnight Library by Matt Haig..

[Colleen]

@Jane Armstrong I appreciate that you shared some of your favorites because I have not delved into those yet but will place them on my list, especially “The Book of Joy”!

[jen-cueva]

Hi, @Jane Armstrong; you certainly sound like an avid reader. My daughter suggested I join a book club. I’m nervous since I am not good at keeping focused anymore.

Your list sounds interesting. I have The Book of Joy somewhere in my stack of to-read books. I now will need to look for it. Hopefully, it’s not one I donated or left packed in the garage when we downsized into our condo.

Thanks for sharing and happy reading, Jane.

[Randolph Reynolds]

A new format. OK. I usually have about four books going at any given time. Two on Kindle and two from the library. So the most recent ones are:

The Centurian’s Wife by Bunn: about the maid to Claudia Procula who was Pontius Pilate’s wife

The Mozart Code by Rachel McMIllian: romantic story about two people after WWII, who were part of the super secret Bletchley Park group, are now involved in secretive dealings in Vienna and Prague

London Restoration by Rachel McMillian: Another similar romantic story with the same two characters in Mozart Code but the main protaganist is another Code Breaker and her husband (a Biblical Scholar) who returns after five years at war. Suspensful

Surprised by Oxford by Carolyn Weber: Just started. Young woman who gets a scholarship to study at Oxford University in 1994. She has read C.S. Lewis.

Others:

Oppenheimer: Portrait of an Enigma by Jeremy Bernstein: Compliation of notes from people who knew Oppenheimer.

Mustang Ace by Robert Goebel: Goebel’s story of flying P-51 fighters in WWII. (Out of the many books I’ve read about fighter pilots this is the only one about flying this famous aircraft.)

Loud and Clear by Iftach Spector: Famous Israeli fighter pilot who flew in three wars.

Miramar Bay by Bunn: First of seven books about people living in the upper coast of California.

That covers the last eight weeks of reading. The two best authors in this list are Davis Bunn and Carolyn Weber. Happy to oblige on current reading, your PAH friend.

[jen-cueva]

Hi @Randolph Reynolds; you have read much more than most of us within the last few months. I didn’t know, but you enjoy romance and history. I would guess you enjoy reading history-related books but are too cool to learn that you also read a little romance. I bet your lovely wife enjoy reading too. Does she read like you?

How are y’all fairing this week, my PHriend? Have a wonderful weekend.

[Linda Concoby]

Hey, y’all, Heads Up! If you belong to your local library, ask about Hoopla and Libby. Both have audiobooks and ebooks…for free. Hoopla has a lot of magazines as well. Enjoy!

[jen-cueva]

Hi @lindaconcoby, what an excellent resource and reminder. My local library is across the street. I have checked out books there. I have seen on Libby the audio versions of books. I’ve never heard of hoopla, but I will check it out for free magazines. I enjoy reading shorter articles in magazines and recipes.

Thanks for sharing; many will find it helpful.

[brenda-denzler]

Can I shamelessly promote my own new book, which is just now out?

[jen-cueva]

@Brenda Denzler, of course, please do share how we can purchase your book. W#e did have a place for someone to add that, if I locate it, I’ll tag you. But in the meantime, feel free to share here.

Congrats to you, my dear PHriend! You did it!!

[Colleen]

Yes! Please do! Can’t wait to read it @Brenda Denzler

[jen-cueva]

Hey, @Brenda Denzler, we patiently await your newly published book link! How are you doing? You’ve been a bit MIA.

[Colleen Steele]

Let’s revisit this topic but with a focus on medical topics. Have you read a good book lately on anything medical related whether it be physical or mental wellness? Share it with us and explain what you gained from reading it.

[jen-cueva]

I am (still) reading a Memoir. It’s about a group of close friends who rallied their friend, “Ames,” who found herself in need of her second heart transplant. It’s not specifically medical, although I could relate to it on many occasions. I’m finally on the last 100 pages. But it’s so good and, at times, heavy and too much for me as I relate. That’s why I think I’ve kept at it, though.

It’s so touching how special the friendship these women share. Here’s the info on Amazon: “In this moving memoir about the power of friendship and the resilience of the human spirit, Amy Silverstein tells the story of the extraordinary group of women who supported her as she waited on the precipice for a life-saving heart transplant.”

https://www.amazon.com/Glory-Was-Had-Such-Friends/dp/0062457470

This book helps remind us that we cherish friendships. It is also a gentle reminder to reach out more to check on my closest friends. It seems that it’s more challenging to make and build new friendships after a certain age. But I think this book opened my eyes. While most of these were friends for 20-plus years, it isn’t always about how long you’ve known friends.

A great twist on an older topic, @Colleen!

I have one more I will share next week. Thanks again.

[Valerie]

Hi!
I’ve been reading a book “Behave: The Biology of Humans at Our Best and Worst” by Robert Sapolsky for three years now. It’s incredibly interesting and incredibly difficult! I hope I can finish reading this.
Before that, my book on the medical topic was “An Elegant Defense. The Extraordinary New Science of the Immune System. A Tale in Four Lives” by Matt Richtel. This is a very interesting book about immunity. This is described by the example of the lives of four people. This is very relevant and informative for me.

[jen-cueva]

Hi @Valerie, it sounds like you have quite an interesting taste in reading. I recall an earlier comment when you shared several relatable medical books. Behave The Biology of Humans at Our Best and Worst sounds like it could be heavy at times, while being quite interesting.

How many books have you already read this year? Thanks for sharing.

[Colleen Steele]

@jen-cueva I would say this Memoir falls under medical. Sounds like a very touching read!

I still need to read “Handle with Care” by Jodi Picoult. It’s about a child who was diagnosed with a rare disease and her mother’s battle to advocate for her. My friend Janet recommended it because when she read it she thought of me. I was thinking about reading it and seeing if I can turn it into a column.

[jen-cueva]

Hi, @Colleen; it’s so cool that Janet suggested that book by Jodi Piccolt to you. I have read several of her books and always enjoyed them. You should certainly read it soon and then write about it. I plan to do that with this book I mentioned, too.

I started the other book when I was in the hospital. It’s more short stories, but I do know some of the stories are difficult to read. It’s the book I contributed to in efforts for Rare Disease Day, created by a friend, Kerry Wong. “Kaleidoscope Rare Disease Stories is a collection of authentic, first-person stories from people living with various rare diseases worldwide. The writers in this book, like the rare diseases they live with, span all ages, ethnicities, genders, religions, and ability levels.

<i style=”font-weight: bold;”>Each story shares an aspect of their experience: the journey to diagnosis, what they’ve learned, how they’ve grown, changed, and connected with others in the rare community, how they embrace life, and more. These rare warriors show strength, courage, creativity, humor, and more. They are living proof that even through the darkest of times, through the unthinkable, through the fear – there is always hope”.

<i style=””>That Amazon link is below. So far, reading this book has reminded me that while our situations may differ, we all want to work together to better educate and benefit our rare disease communities. It has also reminded me that others have it worse than I do. I’m reading through this one slowly, a few stores at a time.

https://www.amazon.com/Kaleidoscope-Rare-Disease-Stories-ebook/dp/B0CTR6WTDK<i style=””>

<i style=””>

<i style=””>My next book will probably be less medical related, but we will see. Thnaks for revisiting this topic, @Colleen.

[Colleen Steele]

@jen-cueva I still need to read that book you contributed to! I’m sorry I haven’t yet! Really looking forward to it!

[jen-cueva]

Hi @Colleen, no need to apologize. My dear friend and FWW, you have not had much free time to read. It’s there, and I will wait for you to pick it up when you’re in the mood.

I know the first anniversary of losing Brian is approaching soon.🤗 I wish I could reclaim the name of the book I read in nursing school about grief. It was interesting and impactful, too. It helped me when I started working in hospice care.I’ll try and remember to search for the name, at least and let you know.

How are you managing this week? I know your plate is full of taking care of your parents, getting Cullen ready to go off to college, and self-care. How can we best support you?

[Valerie]

Hello everyone!

Jen, it’s great that you’re taking part in writing such useful books! I’d like to read this. And I’d like to read Brenda’s book, but it’s probably not available in my country.

I admire your courage, @Colleen and @jenc ! You are read such heartwarming books. I cried on “Before I Die,” but it’s hard for me to read such stories. I take such stories too personally. There are a lot of books waiting in line this year. It’s still hard for me to read physically.

If you find the time, read a book by Robert Sapolsky, or watch a video of his lectures. He tells a very interesting story!

[jen-cueva]

Hi @Valerie, thanks for your kind words, my PHriend. But I’ll tell you, my secret is if I read a book that’s too heavy and I relate to medically, it’s challenging. But I tell myself the next book is a fun one. The one for Rare Disease Day is short stories so that I can read those in between the other books. I won’t read it at once.

And yes, @brenda-denzler ‘s book is on my list, too. If it’s not available there, I wonder if we can share ours once we read it? Once I read a fun or chill book, I hope to read hers.

[brenda-denzler]

I think both of my books are in Kindle format, which might make them accessible outside of the US? I’m touched that you have me on your list. (I’m on all KINDS of lists, and some of them you don’t really want to be on! HA!)

I will say that the UFO book is probably a more enjoyable read. The book about medical PTSD is no doubt a lot more difficult. Jen, I get it about not being able to read some things because they’re just too hard. Emotionally. Not language-wise.

[Colleen Steele]

@brenda-denzler your book about PTSD is on my son, Cullen’s list. He is working on a BA in Medical Social Work and this is an area that interests him quite a bit. The problem is, with all his classes he hasn’t had time to read something of his own choosing. He is hoping to take the summer off so many he will get a chance then.

[brenda-denzler]

I am so flattered and pleased that Cullen is interested in my book. My guess is that he will find it kinda heavy, because he’ll be able to identify with parts of it.

[jen-cueva]

Hehe @brenda-denzler , you are too funny! I’m sure your books are fantastic reads. I will read a summer fun romance before reading your PTSD book.

Yeah, it sounds like you understand emotionally difficult books. I often find that some of the most challenging, heavier books drain me, too. Do you find that those books can be draining?

[brenda-denzler]

Jen, yup. Emotionally draining OR intellectually draining/heavy. Sometimes I have to stop and take a break.

[jen-cueva]

You get it, thanks @brenda-denzler . But some readings can indeed be so heavy and draining. The more I relate to or want to help the main character, the more it makes a difference. Hence, why I take breaks from heavier reads to a more fun read.

[Colleen Steele]

@jen-cueva that is a smart plan of reading…if something serious then something fun to follow. I’ve done that with TV shows or movies so why not with my reading material as well!

[jen-cueva]

Hi @Colleen , as I mentioned above, some of the heavier books drain me. That’s why I try to break that up with some fun reads.

It’s too funny that the author @Valerie mentions that you were immediately drawn to the one about zebras.

[Colleen Steele]

@Valerie I’m not familiar with Robert Sapolsky. Just looked him up and he does sound interesting! My eyes went right to, “Why Zebra’s Don’t Get Ulcers”. I want to know why so maybe I’ll start with that book of his! LOL!