Jenny Livingston
Forum Replies Created
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Luisa, I am also fascinated by stories of late diagnosis. It is so different from my own story (diagnosed at birth, having two older sisters with CF as well). It is all I have ever known. There wasn’t a day that I learned I had CF, the awareness was gradual yet somehow always there as well — which is interesting to think about! I’m so glad you asked this and hope that some of our forum friends will share their experiences here.
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Luisa, you have read my mind! I deal with chronic fatigue during the best of times, but since my COVID infection in July, it has been worse than I remember it being for a very long time. I’ve found myself needing to nap, not feeling rested even after 8+ hours of sleep, falling asleep during movies with the family, etc. I am simply exhausted all the time right now and, as you mentioned, that comes with quite a bit of guilt.
One thing I’ve done is remind myself that resting is productive. When our bodies and minds are needing to recover, there is nothing more beneficial than giving them rest. It’s not something I can push through or ignore for very long, so the best way I can be productive is to give myself grace, rest, and kindness.
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This week in particular, I’ve found myself needing this kind of retreat. Something that gets overwhelming for me at times is the online CF world. This past week I’ve delved into creative projects, books and podcasts, and I’ve spent a ton of time outside with my animals. These things always bring me joy and peace, but this week I’ve really used them as a distraction while avoiding much engagement with the world of CF. Sometimes an act of self-love and self-preservation is taking a step back for a bit.
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Luisa, we’ve spoken about this a little bit, but I want to again express my condolences and love for you and your family. Your experience with your aunt reminds me so much of my own experience with my grandfather a little over a decade ago. He passed away within a very short time of his cancer diagnosis, and I had the honor of being in the room with him as he took his final breaths. I thought witnessing death would be scary or strange, but I found it to be one of the most profoundly beautiful things I’ve ever experienced. This was the first of many experiences that made me realize that I want to assist in the end of life process (perhaps as a hospice social worker or something similar).
Regarding CF and grief… whoo boy! There’s a lot to unpack and process there. I’ve experienced varying degrees of grief at different times in my CF journey. Whether related to the loss of a friend/loved one or dealing with my own health, there seems to be an underlying current of grief that sometimes boils over and becomes overwhelming.
Everything you are experiencing is a normal part of the human experience, and although it can feel terrible, I maintain that these periods of grief and depression add to the nuance and beauty of life. I don’t watch the show, but I’ve seen a quote shared from Wanda Vision that says, “What is grief, if not love persevering?” Regarding the loss of your aunt, I think your grief is a powerful testament to your love for her.
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I hadn’t read this article yet, so I’m especially glad that you shared it here! It was very relatable. Since being on Trikafta, my doctor has given her support for me to travel without my Vest — as long as my health is stable and I won’t be gone too long. Being able to do this has felt so freeing! Without fail, I used to always get pulled aside my airport security while they did extra scanning/testing on my Vest. It was so extremely anxiety inducing for me. The last two times I’ve flown (without my Vest) I’ve been able to zoom through security with ease. I’ve learned that so much of my fear and anxieties about flying were actually anxieties about navigating the airport with SOOOO much luggage and medical equipment.
Like Nicole, I’ve always worn high-quality masks on planes. When flying in the last couple years, I found it comforting that everyone else was wearing one as well. Now that mask mandates have lifted, I expect to be one of only a few people wearing one on an upcoming flight this fall. That does worry me.
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Isn’t it wild how different things are? I think it’s awesome that you’ve been able to reduce treatments so much. My treatment routine really hasn’t changed to be honest. I still do 2 treatments a day and increase to 3+ when I am sick or congested. I find that I still REALLY need my nebulized albuterol treatments each day. Along with those, I do other pretty standard meds (Pulmozyme, steroid inhalers, etc). Since I am sitting there anyway, I still strap in and do a full Vest treatment. It has been a built-in part of my day for so long; I have found it incredibly helpful to maintain the routine. I’ve dealt with a handful of viruses in the past couple years which never fail to make me congested and full of mucus for weeks following the initial viral symptoms. In these instances, it’s been really easy for me to stick to regular treatments to aid in my recovery since I am doing them all the time anyway. 🙂
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Luisa, I love this question and think it’s great that you still have that connection with Dr. S. I immediately thought of several people who’ve deeply impacted my life, but I’ll try to narrow it down to just a few for this response.
One of my current CF doctors (we’ll call him Dr. L for the sake of anonymity) has both saved and changed my life. He’s seen me through my absolute worst when it comes to my health, but also my most difficult life circumstances. He once said to me, “Life was not very kind to you and I had an increasing sense of dread…” but now, our conversations are very different. We reflect on those dark times while honoring the absolute wonder of what life looks like now. I’ve never felt such connection and trust with a doctor (which is not to diminish the greatness of my other doctors in any way — I’m blessed with several truly amazing providers).
Secondly, my CF pharmacist, Dave. He has said that we’ve “grown up together” and I completely agree with the sentiment. He’s helped me through so much, we’ve actively partnered in my CF care, and we’ve become “CF family” along the way. He continues to impact my healthcare and life in such positive ways.
And one more — Bill. I met Bill when I was 9 years old. As pediatric patients, we’d walk across a bridge that connects the children’s hospital to the adult CF center for pulmonary rehab. Generally, patients didn’t get to do this until they were 12 but I got a free pass since my sister was older. Once I became an adult, whenever I was hospitalized, I’d spent 5 days a week with Bill in pulmonary rehab. We’ve had countless talks about family, health, religion, philosophy, comedy, and more. When Bill told me he was retiring, we both cried. He has been such a positive presence in my life for nearly three decades now. He’s been retired for a few years now, but we are still in touch.
If I don’t stop now, I’ll end up writing an entire novel about the doctors and other providers who’ve changed (and saved) my life.
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LUISA!!! I can’t express how dang excited I am that you’re back here with us! I’m also thrilled that some of our new members will have the chance to get to know you and all your loveliness.
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The other side of the coin/birth and death interpretation is my favorite. The end is inevitable, so take this moment to breathe, to love, to enjoy, to exist. ♥
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I love Nicole’s writing; thanks for sharing her article here. I fully agree with you both — aging is a beautiful gift. I also like the quote you shared from Osho. It resonates deeply within me.
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This is certainly not the first time I’ve heard of someone’s doctor brushing aside symptoms or being hesitant to test for CF because they don’t fit the traditional mold of what we expect CF to look like. This is just one of the reasons that advocacy and storytelling are so important: they help break down assumptions and misconceptions about CF.
Kudos to this mama for following her gut. I believe it is what we should all do when it comes to our bodies, our health, or our children’s health.
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I don’t think our character is ever tested during times of ease. It happens during challenging times, and CF has definitely presented many opportunities for growth in my life. Like Katie, I really like the person I am today, due in part to those challenges (although I didn’t necessarily love those hard things themselves).
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While none of them are trained service animals, all of my pets are supportive and loving. Being a pet owner has always been something I enjoy deeply. Animals are such treasures!
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“When you’re given limited options in life due to your chronic illness, you develop tunnel vision. But now, for me, the blinders have come off.” These words struck a chord in me. Trikafta has widened my view of life once again as more things have become possible. It is truly remarkable. As Maggie says, I hope we can keep the spirit of advocacy alive until everyone with CF has a highly effective therapy option available to them.
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@drwill this is fascinating! Thank you for sharing. After my sisters and I were diagnosed, my family also began to look at varying symptoms in the family. So far, any cousins or aunts and uncles that have been tested have not proven to have CF, but my grandmother is fairly certain that some of her relatives who passed away very young had it.
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Timothy, this reads like something from a movie! I’m so glad you were able to have such varied and exciting life experiences, although your “CF crisis” as you called it sounds far too “exciting” for my taste. How incredible that you made it through while also receiving the diagnosis that finally led to some answers. Thank you for sharing all of this!
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Beatrice, hello! While I have not experienced increased liver enzymes myself, I do know this is something that can happen with Trikafta. Something I do have personal experience with is higher blood pressure! As you mentioned, I don’t think it is a direct result of Trikafta, but rather a result of no longer needing all the extra salt I am accustomed to eating. Learning to change my diet and relationship with food has been one of the harder parts of being on Trikafta!
Side note: I am so happy you found the forum! I hope others will chime in with their experiences and insight.
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Felicia, I love that last bit you shared. I recently read something similar — when feeling guilty or shameful, ask yourself whose voice you are hearing. Is it your own? Your parents and grandparents? Society in general? Most often, it is not my own voice but that of someone else’s expectations. This has really helped me battle that guilt. Thanks so much for sharing your thoughts here!
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Aimee, yes! I think this is an important distinction and as I read your response, I realized that I feel similarly. I never mind if friends or family share a bit about what I’m going through, but I appreciate it when they do so in a way that is still respectful of my autonomy and privacy. For instance, if my parents want to mention that I’m in the hospital or dealing with health challenges, great! But I’d prefer that they briefly express their feelings about it rather than detail my specific struggles.
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Aimee, I’ve said it before, but I adore your sense of fashion! I think “fashionably comfortable” is perfect. I’ve heard so much about Lates by Kate but have never taken the plunge to try them. Maybe the next time I’m admitted, I’ll splurge a bit and finally give them a shot!
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Tim, you mentioned several things that could single-handedly cause burnout! It sounds like the last couple years have been quite difficult. I’m glad you’ve got each other, supportive nurses and staff, and family. I always find comfort and rejuvenation in family relationships as well.
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Paul, what a lovely illustration of Dr. Weinberg and the influence he’s had on your life. I’m sure he’d appreciate these words and knowing that you still carry him with you.
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Ziv, it sounds like you are a great self-advocate! Keep using your voice to push for the things you need; it can be hard to do at times.
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William, I love to read responses like yours. I feel fortunate to have a similar relationship with both my doctors.