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True or False: Do you like extra salt on your food?
I’m sure we’ve all heard this joke in the CF community: We all love salt. We add it to our chips… to our meals. It’s a constant salt-side hustle. But… is it?
I wonder how many of these traits are actually true to form. Since this one can be explained by science technically, but might be a…[Read more]
National Pharmacy Week is celebrated the third week of October to acknowledge the invaluable contributions that pharmacists and technicians make to patient care. I’ve been blessed with the best pharmacists and pharmacy technicians. My healthcare and life have been transformed by their assistance, expertise knowledge, invaluable advice, and f…[Read more]
Bailey, I’m so glad you asked this! Five Feet Apart seems to have gotten equal amounts of love and criticism from our community, and I understand both. For all the inaccuracies (hey, it’s Hollywood, what do we expect?) some elements were so spot on, I was shocked. I first watched it in theaters with my partner and daughter. Then, as part of a…[Read more]
From the CF News Today Instagram page:
Mary and Peter Frey are childhood sweethearts who first met through their local church. The couple vlog daily about Mary’s journey with cystic fibrosis, covering all aspects of the disease, including the most recent addition to their family: their service dog, Oliver.
Learn more about the Frey’s and…[Read more]
My husband has never seen the movie Five Feet Apart before, so I decided to finally show it to him last night since it’s free on Hulu right now.
During the film, we kept gently joking about the fictional liberties of the movie (which make total sense: It’s Hollywood, after all), and the parts that rang profoundly true. I remember being so…[Read more]
If I could do it all again …
This thought implies that I think that I did it once before – and I am not at all sure about that. In my perception, it is more like it all happened with little or no real control on my side, as a spontaneous unfolding of cosmic magic. I could not have imagined in my wildest dreams when I was, say 12, everything…[Read more]
I mentioned my “career” in an earlier post.
There was a time in my youth that I regretted the health-barriers that prevented me from being an airline pilot, but in retrospect I am glad about that. A case of virtual discrimination perhaps. I completely got that out of my system by learning flightsimulator on the pc for some time. But I stopped…[Read more]
This is either going to freak you out or make you laugh and say, “Of course.” The similarities between us are sometimes eerie! As a child, I hoped to one day become a dolphin trainer at Sea World. After that, I dreamed of spending months at a time at sea as a marine biologist. Realizing that wasn’t a job conducive to family life, I thought being a…[Read more]
To close out our week of childhood themed questions, here’s a big one:
If you could go back to school for anything, what would it be?
This of course assumes you were able to go to college for something to begin with, or that you’d want to go again. Another way of looking at this question could be: “What did you want to be growing up?” but I know…[Read more]
It’s too little to call it a “plan”, but I keep a small bag with all my meds for ten days, a spare nebulizer and a list of all my recent pills at hand in the bedroom closet.
In case of a temporary emergency evacuation or hospital visit this seems handy. Of course I now have to check the expiration dates on those meds regularly and refresh them…[Read more]
Being Kelly’s mom, I am able to answer these questions (most of them anyway) with ease.
Favorite Movies: since Kelly is a bit older than you Bailey, her movie favorites precede yours somewhat. Her all time favorite was/is Dirty Dancing. She loved Lady And The Tramp, and Bambi (except the part where Bambi’s mother gets killed). Another favorite…[Read more]
What is CF related? What is not?
As we learn more about CF the issue is very cloudy. The recognition that CF is not just a disease that causes abnormal mucous that affects the lungs and other mucous membranes but that the failure of the Chloride pump due to the faulty CFTR protein leads to abnormal intracellular electrolytes. If Chloride ions are…[Read more]
Sadly not all pet dogs are as fit and healthy as yours. Over my 50 years I have seen many severely disabled pets. Heart disease is too common, Cavs with syringomyelopacia, Dachshunds who get about using trolleys as their spine has been damaged, breathing issues with Pugs and so on. Many of the more severely are euthanased. Have not seen a genetic…[Read more]
I was born into a life of “sickness.” Both my older sisters having CF, one of whom was always very ill. Shannan died at the age of 14; I was 6 years old at the time. All my memories of her have CF components. I can remember the sound of her oxygen machine, home IVs, helping with her port dressing changes (I was sometimes allowed to use iodine…[Read more]
Okay, I know I’ve been talking a lot about family, childhood memories and nostalgia this week, but let’s have some fun with this, and get to know each other on a level unrelated to sickness.
Here we go….
Growing up, what were your favorite:
3. Breakfast Cereal
5. Special Treat or Candy
Well, I walk our dog four times a day and it always amazes me how perfectly this animal body of hers is suited for everything she does. No matter what surface, wet or dry, hot or cold, soft or hard, her paws are always the perfect fit for every walk and run.
Compared to this, my body is dependent on all kinds of mobility aids.
Before walking…[Read more]
I try not to live up to anything or play any role – perhaps my definition of stoic. Just be. Life will take care of itself, and of me as expression of it. But I remember thinking about one “goal” when I was young.
My parents being well in their fourties when I entered the stage, I never knew my real grand parents very well and their death did…[Read more]
Thanks for the information! Fortunately, our Buddha only once had an ear infection when she was young, in one ear probably due to trimming the hairs in the ear. It was resolved quickly by our vet with antibiotics and prednisone. We never learned her to swim and her coat is trimmed professionally 5 to 6 times a year, including the hairs in…[Read more]
Since family dynamics have been on my mind this week, and a fair bit of nostalgia, I was curious:
What was your earliest example of “sickness”?
Did you have a particular role model as a child? Do you remember seeing it on TV, or hearing someone in your family talk about someone who was ill? How did they talk about it and how did it impact you,…[Read more]
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