judy-moreland
Forum Replies Created
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Thank you, Jenny and Bailey.
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This is a reply to “Do you get nervous talking to healthcare professionals or asserting yourself in an appointment?” My answer is no, not anymore.
I survived 3 years as a nursing student in the late 1960s. Back then, the doctors, usually men, were godlike and many of the nurses submissive. At least we nursing students were submissive. We felt we had to be.
It lasted a long time for me. When I was 42, I was diagnosed with CF. The pulmonologist I was seeing at the time, perhaps skilled in pulmonolgy but certainly not in relationships, asked me “Did you talk yourself into this disease?” as he looked at my chart. My PFT numbers were excellent at that time.
My husband and I were so stunned that we were speechless. I can assure you that we would not be today. I left that practice after 2 years and wrote a letter to that doctor expressing my disgust with his remark when I left.
About 9 years later, I had a second sinus surgery that didn’t go well. My CF doctor at the time thought my lung function was strong enough for general anesthesia. It wasn’t. At my first appointment after the surgery when I expressed my disappointment at how sick I was after the surgery, he said, “Well, that happens sometimes.” Again, I was speechless. However, the next time we met, I told him in no uncertain terms that I didn’t like his comment and hoped to never hear comments like that again. He apologized, and after that, we got along very well. He has since left the practice, which I feel very bad about, as he was my CF doctor for 21 years and helped me tremendously. He was interested not only in my pulmonary health but also mental health. I miss him.
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The part of my personality that makes health and healing the hardest for me is twofold: I am a great procrastinator and a great perfectionist. Of the 2, procrastination is the worse personality trait, especially now that I no longer work. When I worked full time (until age 51) and then part time (until age 58), I was much better at doing airway clearance and exercise every day. Now that I am not working, I put off doing a/c and exercise and don’t do airway clearance every day and hardly ever exercise. The issue is compounded because I helped my mother significantly with her Alzheimer’s from when I was first diagnosed with CF at age 42 and on for 14 years. I had a couple of years “off,” and then did the same for my brother with Alzheimer’s for 10 years. He died last year, and after that, it seemed to me that I deserved a break and have been very lax about what I need to do to keep from getting sicker. I don’t say “to stay healthy” because unlike some people at my clinic who ask me if I’m healthy, I don’t think I’ve been healthy since before I was diagnosed. If it sounds like I feel sorry for myself, I do. I should say that’s the 3rd personality trait that makes health and healing hard.
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There are different opinions on this subject of dehydration and alcohol and caffeine intake, especially caffeine intake. The different opinions above make me think I don’t have the complete knowledge to know what is right for every person with CF.
I didn’t understand all of Paul’s opinion, but I think I will leave it at this: In my personal struggle with CF, I have found that caffeine makes my mouth very dry, and it makes me urinate more and be more thirsty (quite possibly alcohol, too, but it has been over 20 years since I’ve had alcohol and don’t remember for sure). I know for a fact that alcohol is very dehydrating from studying alcoholism.
Therefore, in my personal CF journey, it made sense for me to give up alcohol and caffeine. I loved coffee and drank at least 2 cups a day, sometimes more, when I drank it. I did not receive guidance for this from my CF Clinic, but I think giving up alcohol and caffeine has helped me. Unfortunately, since I was diagnosed at 42, I didn’t know that I had CF when I was trying to get pregnant. If I had known, with the right, knowledgeable gynecologist, I may have succeeded.
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I forgot to check “Notify me of follow-up replies via email” in the previous comment.
Thank you.
Judy Moreland
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Alcohol is dehydrating, the opposite of something a person with CF needs. Ever notice how thirsty you get after drinking more than one or two drinks?
My understanding of the problems in CF is that problems are caused because chloride doesn’t form salt in the cells correctly. The salt (sodium chloride) holds water and lubricates the lungs, pancreas, and reproductive organs, etc.
Most of us are familiar with thick, sticky (too dry) mucus in the lungs, which leads to lung infections. The dehydrating effects on the female reproductive system is not that well known, but in my case it caused or helped cause infertility. An infertility specialist I saw when trying to get pregnant told me that I wasn’t ovulating–when I clearly was–because my “mucus was too thick.” We were both right; I was ovulating, and my mucus was too thick. I was never able to conceive, but my husband also had a low sperm count, so it was probably a combination of both issues.
I think CF related diabetes is caused because the pancreas is not hydrated enough.
I do not believe alcohol and CF mix well. Caffeine is also dehydrating, and I stopped drinking alcohol and caffeine about 20 years ago. I probably could drink both in small amounts, but it was actually easier for me to give them both up.
I didn’t learn this from my CF center but did research on CF and am a trained professional nurse.
Judy Moreland
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Superabundant stress (I know; it’s 2 words.)
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I definitely miss my CF Care Team. There is a great one at State University of New York (SUNY) CF Clinic in Syracuse, NY. I have been going there for 22 years now. After I was first diagnosed in 1992, this clinic was only for pediatric patients. By 1998, I could get in and saw a pediatric CF doctor for the first year until and adult doctor joined the team. In all the years I’ve been going there, only one member of the team was– to put it in polite terms–less than helpful, but she retired a long time ago. Telemedicine is helpful in this pandemic, but I miss the team.
Judy Moreland
age 71 with CF -
Bailey,
Fredonia is in Western New York State. Syracuse is in Central New York State. Fredonia is about a 3.5 hour drive from Syracuse. It’s funny, but as a young person I always thought that I had no accent. The people I worked with in Philadelphia laughed at the Syracuse flat “a” as in “I ha-a-ave to get my pa-a-ackage.” I worked on that flat “a” for awhile. Some people thought I was from New England. In Philly, the people often talked somewhat like people in New York City saying “cawfee” for coffee.
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Baldwinsville, NY, a suburb of Syracuse, NY in Upstate NY. Some people who aren’t familiar with New York State think that its mostly New York City, but upstate is very different. Syracuse in the snowiest “big” city in the country. I’m sure there are small towns or hamlets that are snowier in the north, but we are the biggest city with the most snow. I don’t mind the snow so much now that I don’t drive to work every day, but the cold in the winter really gets to me. When I weighed more, it wasn’t so bad, but my weight is down to about 95 pounds, and when we walk our dog in the winter, the cold is brutal at that weight. I do like Syracuse, though. We don’t have to worry much about floods, wildfires, earthquakes, tornados or hurricanes. The Great Lakes are the biggest fresh water system in the country, maybe even the world. There is a very active peace community in Syracuse, and that means a lot to me.