Judy Moreland
Forum Replies Created
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Hi Bailey,
I had both in the same day (different arms) over a week ago The booster and regular flu shot did cause me to have sore arms for the next couple of days, but I think having covid and/or the flu would be much worse. It reminded me of past booster shots I had. The pain was not unbearable.
Jude
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I love John Lennon’s “Imagine” and find it relaxing.
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Jenny,
I’m very happy for you with all the positive effects of lowering the Trikafta dose on your mental health and sleep. It would have been a very difficult decision for me, and knowing of the positive effects has to be reassuring for you. May you continue with having better sleep and feeling healthier mentally.
I’m sorry to hear about the wildfire smoke in your environment. I live in Upstate New York, and there was really only one day when it seemed to be an issue. The winters are long and can be brutal, but I am happy to live here because earthquakes, tornadoes, hurricanes, and forest fires are pretty rare. We do get blizzards and often very late or no spring season. I love the summers here, and the falls have gorgeous colors.
Love and lobe,
Judy
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I tried marinol, which my CF doctor prescribed in 2011 for weight gain. I wasn’t on it long. My brother with Alzheimer’s (he was 67 at the time and died in 2019) was living in assisted living, and I had to take him to his many appointments. I didn’t take it for very long because I was worried about driving him around while taking marinol. I have never regretted coming off it because I would have blamed myself if we got in an accident. I worried that it altered my mind a bit, but of course, the fear about that could have caused the worry.
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Paul, Happy Birthday! My best to you in starting Kaftrio. I have been on Trikafta for over a year and a half, and it has helped me tremendously in many ways. I’m still struggling to gain weight, but the lung function has improved. My FEV 1 is still lower than I would like, but I went for 3.5 years without needing antibiotics, and when I did need them earlier this month, I was able to get by with 2 orals. Let us know how you do.
Jude
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Paul Met Debbie,
I’m not sure I’m speaking to just Paul or just Debbie or Paul and Debbie. Which one of you has CF, or do both of you have it?
Anyway, I want to thank you for the comments. I loved studying Hinduism and Buddhism. No very little about Jainism. Have studied The Bhagavad Gita and parts of The Upanishads. I really liked the translation of The Bhagavad Gita by Eknath Easwaran.
Thanks again. I think that a lot of people in the US do not realize the beauty of the Eastern religions. There are beautiful parts of Christianity and Islam, to be sure, but the Eastern religions add much to the beauty of spirituality.
Jude
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Tim
<div> I also love the Prayer of St Francis. My husband and I said it at our wedding. Still love the Buddhist prayer, too, and believe the poet thought about the order. I am not a religious person and do not adhere to any specific religion, but I think I am a spiritual person. There are many treasures in the different religions.</div>
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<div> I assume you have CF or are close to someone who does. All the best to you.<br clear=”none” />
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<div>Jude<br clear=”none” /><br clear=”none” /></div>
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Forgot to mention that it’s not a coincidence that being filled with lovingkindness comes before being well.
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I am happy to write something to you that is helpful, Jenny. Let us know in a few months how it is going for you.
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Jenny, Such decisions like this are never easy. I hope you can breathe easier now that your decision is well thought out and over. Here’s a simple Buddhist prayer, author unknown:
May you be filled with lovingkindness;
May you be well.
May you be peaceful and at ease;
May you be happy.
I am not preaching any particular religion here. I have studied many. Huston Smith, who used to teach at Syracuse University near me, wrote a wonderful book about the world’s religions. There is much to love about many of them. I just love this prayer and say it constantly for “all living beings.”
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I have not read these blogs before. What county do you live in? Who has CF?
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It’s interesting to read that 3 out of 3 people who commented have trouble with the sense of smell or can’t smell at all. I always thought this was a side effect of a lot of antibiotic usage. Maybe it’s just sinus and rhinitis issues.
Judy Moreland
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I love the taste of ice cream and fresh fruit, the smell (when I can smell, which is not often) of barbecued meat, the feel of the grass beneath my feet and the sun on my body, and the sound of the crickets at night in August.
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I tried to fix my first sentence but wasn’t quick enough. Should say “I was a teenager for most of the 60s and loved . . .”
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I grew was a teenager for most of the 60s and loved the Beatles, Chris Montez, Peter, Paul & Mary, The Mamas and the Papas, Simon & Garfunkel, and I could go on and on . . .
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Didn’t mean to submit twice. I didn’t think it went through the first time. Sorry.
Judy Moreland
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First of all, please let’s stop using “CF-er.” We are much more than our disease, and I know we say “diabetic,” “quadriplegic,” “etc, but personally, I really dislike “‘CF-er,” and I’m not sure “diabetic” is the first adjective used for someone with diabetes. Would much rather be called a “a person with CF,’ or PWCF.
Secondly, I don’t understand “every other cell is affected by retention of Chloride within the cells” above. I must not fully understand CF the way I thought I did because I thought that in CF, the chloride didn’t get into the cells to bind with sodium, form salt, and provide necessary moisture for the cells. I thought the lack of moisture in the cells caused our problems with thick, sticky mucus.
Judy Moreland 71 PWCF
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First of all, please let’s stop using “CF-er.” We are much more than our disease, and I know we say “diabetic,” “quadriplegic,” “etc, but personally, I really dislike “‘CF-er,” and I’m not sure “diabetic” is the first adjective used for someone with diabetes. Would much rather be called a “a person with CF,’ or PWCF.
Secondly, I don’t understand “every other cell is affected by retention of Chloride within the cells” above. I must not fully understand CF the way I thought I did because I thought that in CF, the chloride didn’t get into the cells to bind with sodium, form salt, and provide necessary moisture for the cells. I thought the lack of moisture in the cells caused our problems with thick, sticky mucus.
Judy Moreland 71 PWCF
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I am not at all happy with the latest decision about mask wearing. We who have been fully vaccinated have no way of knowing if maskless people are also fully vaccinated or not. Some may have not been vaccinated at all (and don’t intend to get vaccinated) and other may not be fully vaccinated. Some may be unable to get the vaccine for reasons unknown to me. MY CF doctor has said I should be extra cautious, and I fully agree. I think that those who are not vaccinated at all and those who have not been fully vaccinated should wear masks and practive social distancing. Because we have no way of know if they do, then I have to do it. This pandemic has really brought out that some people just think about themselves and their comfort level. I don’t know for sure, though, who among the unvaccinated have valid reasons for not getting vaccinated, so I can’t cast a wide net on all who are unvaccinated.
Judy Moreland
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Jenny, I have been trying to find your fairly recent column on your latest health challenges, and I’m coming up empty. Want to reply to you, and I am sorry that your challenges with this awful disease are intense right now.
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Bailey, Good for you that you love hypertonic saline and TOBI for how much they work. I hated taking TOBI each time I had to take it because 25 minutes twice a day for 28 days was hard for me. Also hate cleaning the nebs, and when on TOBI, there are LOTS of extra nebs. I put them in the dishwasher, but as I use the Pari nebs, I always feel that I have to rinse the bottom of the neb part which contains the medicine because it is inverted in the dishwasher and tends to fill up with water (which may be not the cleanest water in the dishwasher cycle). My respiratory therapist told me that rinsing parts of the nebs in tap water isn’t good because tap water isn’t sterile or sanitized, but I have continued to do this for the abovementioned reason.
I agree that hypertonic saline is a wonderful way to cough up the junk in our lungs. I have been using it for over 12 years now, and for me, it’s more helpful in clearing my lungs than the vest, but I do both at the same time. A different respiratory therapist seemed surprise that I thought hypertonic saline was a better expectorant than the vest. The vest seemed to be the gold standard in my clinic for getting rid of mucus, but hypertonic saline rates #1 for me. I just wish I would do it every day as I should. Just don’t like doing the treatment, and sometimes the coughing and vest give me back aches. The main reason I don’t do it, though, is not the back pain, which doesn’t happen most of the time. It’s just that I’m so sick of treatments.
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I wish I had thought to add that the hospital personnel at the University of North Carolina in Chapel Hill and my present CF Care Team at University Hospital in Syracuse were (and are in the case of University Hospital) made up of very committed and compassionate people. That’s definitely what a CF Care Team should be.
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Paul and Tim,
I find this very confusing after thinking all these years that the chloride didn’t get into the cells. In my memory, I see diagrams showing how some of the new drugs let the chloride right outside the cell go into the cell and some have to bring the chloride to the cell and then inside. I have R117H in addition to F508, and with the R117H, chloride was close to the cell and needed a push to go into it.
I appreciate all attempts to make this clearer, but I am still confused.
As far as other organs affected by CF, I am one of the unfortunate women who were unable to conceive because my reproductive mucus was too thick.
Judy Moreland
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Thank you, Tim. I have disliked “CF-er” for years. Appreciate your apology.