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  • Becky Fox posted an update 2 weeks, 3 days ago

    Hi Bailey, Kelly’s body image doesn’t really make me reflect affect my own body image at all. All my girls were quite thin growing up, and I fluctuated. I was so thin (and pale) when I was a young adult, that people sometimes thought I was sick, though I never had anything worse than a bad cold in those days. I guess I have always been aware of…[Read more]

  • Hi Bailey, you asked about stressors. I can tell you up front what Kelly’s stressors are. Gray hair and weight gain. She has been fighting the grays for quite a few years now. She does a pretty good job of keeping them covered. But lately if she goes too long between hair appointments, the grays become more and more abundant and noticeable. It…[Read more]

    • You’re such a loving momma to know all the ins and outs of her… I admire how close you are! Yeah, her weight definitely sounds healthy and admirable to be honest. I also find that most of the people I love look “better” (younger? healthier?) at a higher weight than vice verse, so our news and media definitely has it wrong. But maybe that’s just…[Read more]

  • Hi Bailey, I was saddened to read about your cousin who took his life due to deafness. My brother’s death was also very sad. I won’t elaborate on the details, but I will say this, Roddy was a very upbeat, friendly and social person. However, he did have many health issues besides his deafness.
    As for salt. Kelly has never added salt to her food,…[Read more]

    • Ah that’s amazing! I am my Mom’s one in five (I’m the youngest), which I know is not always the case in a lot of family’s (like Jenny’s), who have multiple siblings with CF.

      My girls were not actually screened at birth, because I was diagnosed so late in life (mid 20s) but was a young Mom (19), so we didn’t know we needed to look when we should…[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]

  • Jenny, I love the admonition to not cook bacon in the nude, that’s golden, lol I might add, don’t fry chicken in the nude either. 🤣 My mom’s best piece of advice was, “Always be careful of what you say and how you conduct yourself. There will always be someone watching you”. My own advice to my family and friends anytime we are ending a visit or…[Read more]

  • Hi again, Bailey, hearing loss and profound deafness is a major debilitating condition that has and does plague my family (mother’s side). My half brother (deceased) was born totally deaf. My mom (also deceased) had hearing difficulties her entire life, and my hearing has gotten much worse, to the point that I have had 3 and a half pairs of…[Read more]

    • Becky, thank you SO much for sharing this! Wow… we have so dang much in common, don’t we? It’s like we are meant to be friends or kindred spirits! 

      On the subject of mental illness, I hadn’t even thought to include that in my write up…. Isn’t that sad? It shows how- even when I say “mental illness is the same as physical disease”- the d…[Read more]

  • Becky Fox posted a new activity comment 5 months ago

    Thanks Jenny, things are a little better. We had one death and were anticipating another one. But so far the second one hasn’t happened. In fact after being told that the person only had 2 or 3 days to live, she started getting better and better. She is still in the hospital though and will most likely live out the rest of her life in a…

    [Read more]

    • My sinuses have been my biggest issue for the last several years. I have especially persistent sinus disease, which is the cause of my headaches (usually). When it gets to the point that the headaches are affecting me daily, that usually means it’s time for surgery. I sometimes take OTC pain meds like Excedrin or Tylenol. I also treat with…

      [Read more]

  • Becky Fox posted an update 5 months, 1 week ago

    Hi all, Kelly and I are still with you. We have had a couple of family misfortunes in the past month. So about pain management. When Kelly was 13 and just prior to coming home from one of her hospitalizations, she began to develop headaches. We just thought it was an isolated incident that some Tylenol would take care of in no time. But no.…[Read more]

    • Becky, this is incredible! Trikafta has lessened my joint pain and overall body discomfort, but I still get those dang sinus headaches (darn it). I can’t help but wonder what the cause of Kelly’s headaches was. CF does such strange things to our bodies! It’s fascinating to me that Trikafta has had this effect for her. Thanks so much for…

      [Read more]

      • Thanks Jenny, things are a little better. We had one death and were anticipating another one. But so far the second one hasn’t happened. In fact after being told that the person only had 2 or 3 days to live, she started getting better and better. She is still in the hospital though and will most likely live out the rest of her life in a…

        [Read more]

        • My sinuses have been my biggest issue for the last several years. I have especially persistent sinus disease, which is the cause of my headaches (usually). When it gets to the point that the headaches are affecting me daily, that usually means it’s time for surgery. I sometimes take OTC pain meds like Excedrin or Tylenol. I also treat with…

          [Read more]

  • Becky Fox changed their profile picture 6 months, 1 week ago

  • Becky Fox changed their profile picture 6 months, 1 week ago

  • Becky Fox changed their profile picture 6 months, 1 week ago

  • Becky Fox posted an update 6 months, 1 week ago

    Thanks for clearing that up for me Bailey. I kinda thought you were the dark haired one, but you look so young. I looked for a camera icon, but , honestly I don’t see one anywhere on here. Maybe I’m not given that option. Hope you and your family are well. Becky

    • Becky, it may be that you need to post a new topic in order to include a photo, instead of trying to include one in this comment thread. I can see that you changed your profile picture (so nice to put a face to the name) but I believe if you want to post more pictures, you’d need to start a new topic — which you are always welcome to do! I hope…[Read more]

  • Becky Fox posted an update 6 months, 1 week ago

    Hi Bailey, you posted a few pictures in your column about being a parent. I’m a little confused. I know you aren’t the smallest girl in the photos, I am curious as to which one of the bigger girls you are. BTW how can I post pictures?

    • Hey Becky! So yes ma’am, I am. I am the middle-sized one in the photos (is middle-sized a thing? lol). My 14 year old is the very tall one (she’s about 5’10”!) and my 11 year old is the smaller one. I’m about 5’4″, but my recent back issue is definitely messing with my ballet posture. My daughter said, “Mom, are you shrinking?” So… I can’t…

      [Read more]

  • Baile, thanks for the info. I never would have thought that the liver can be effected by CF. Proves once more that CF is a full body condition (I prefer to call it a condition as opposed to a disease). Seems you have experienced quite a number of CF related issues. I truly admire your stamina and positive attitude. My interactions with other…[Read more]

  • Paul, yes, she knows. I tell her every time I discuss anything about her. I am her mom after all, and we have an extremely close relationship. You have no need to worry. I would never compromise my daughter’s integrity or her private life, ever. I completely understand confidentiality issues as I worked in a government program for 26 years that…[Read more]

  • Well Bailey, for a 74 year old woman I’m doing quite well. Thanks for asking. 😊 I have to tell you all about Kelly’s fiance’s nephew. I’m not sure what his name is, but a couple years ago (approximately) he was diagnosed with CF at the age of either 13 or 14. His mom, who grew up with Kelly and my youngest daughte, says his CF is affecting his…[Read more]

    • Hey Becky, so in short: yes! My liver is impacted, personally, and I have a lovely close friend who just had a liver transplant due to her CF. Here is a news piece that was done on her recently by a journalist friend of mine… It’s really worth the watch! I am currently on liver meds for mine, and we watch it closely- but it really only bugs me…[Read more]

  • Hi all,
    I had dinner with Kelly a few days ago, and asked her about her Creon intake. She said she hasn’t been taking fewer capsules (is it in capsules?) since starting Trikafta (takes 5 with meals). Also she drew a blank when I asked her about her electrolytes. She said she has never been informed about them. She also said she hasn’t had any gut…[Read more]

    • Thank you so much Becky! That is really encouraging about Kelly and her stomach pain (and yes, I guess we call Creon capsules, right? Although I’ll admit- I sometimes still break them open and swallow the contents quickly that way, which is an old habit from a former stomach surgery when they were hard to swallow! lol) How have you been…[Read more]

  • Jenny, To my knowledge, I don’t believe Kelly has had any complications at all since she started Trikafta. It seems that she told me once that she has reduced the number of Creon capsules, but I can’t remember for sure.

    Tim, to tell you the truth I have no idea if there have been any changes in her electrolytes (I doubt if Kelly even knows).…[Read more]

  • Hi Bailey, hi Jenny,
    Becky Fox here again. I will take a chance in speaking for Kelly by saying that half of the few times she has been hospitalized throughout her life has been due to gastrointestinal complications. The other times were needed “clean-outs”. So I guess the time has been equally divided. The differences, pain wise, centered on her…[Read more]

    • Becky, this is so amazing!!! Thanks for sharing a bit about her history (it’s actually reassuring to me in a kindred-spirits sort of way that she also had some GI muckery, as we can relate to one another). I’m curious as her Momma… Are you often able to be there with her during past hospital visits, or do you have to support from afar? I know…[Read more]

  • Hi Jenny and Bailey,
    I’m happy to share Kelly with you both. Yes, I am way beyond proud of Kelly. Although she hasn’t had the major problems you gals have had with CF, since she has gotten older, her condition was starting to get gradually worse. Starting Trikafta has made a tremendous difference in her life. It was truly an answer to many…[Read more]

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