luisa-palazola
Forum Replies Created
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I was diagnosed a little later than the CF camps, so I never had that experience. I know I grew up (and still kinda am) paranoid of cross contamination, so I veered far away from CF’ers. BUT, my first best friend with CF went to high school with me — so we waved from a distance when we saw each other!
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I saw this story! Gosh — I never thought I’d become one of these people, but I feel like I have almost forgotten about COVID. I think up until January this year I was pretty hands on (masks, being more choosey about where I spend my time, social distancing, etc). But, dang — I got worn out. Now I’ ve gotten my boosters and am getting my next one this weekend!
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<p style=”text-align: left;”>This is an awesome list! I’ve got a couple I can think of:</p>
1. PA: multiple uses
a)prior authorization (insurance related)
b) pseudomonas
c) physicians assistant
2. ENT — ear nose and throat
3. MRSA: Methicillin-resistant Staphylococcus aureus
4. GI — gastrointestinal
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So proud of you Jenny and I am excited to see where you’re headed! Finding that balance is so hard, but I think the best thing I can say is give yourself grace! And, where you can try to go slow!
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Ah — I sometimes feel like I am an oddball. I have lost various young friends/ family members and don’t feel survivors guilt. I often am struck by an intense depression and a renewed sense towards the fragility and uncertainity of life. In terms of coping with depression — lots of therapy and learning to be very gentle with myself and going slow.
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I’ll have to check out Late by Kate! But, in terms of going to appointments — I always try to dress fashionably comfortable. I think it helps me feel a little more put together during a visit. I also wonder if showing up more “presentable” makes doctors treat me a bit differently.
However, when admitted — all sense of fashion goes to the wayside!
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Ah great topic — I second Daryn, I do like it and it is more fun living in this post Trikafta world. But, golly — I think what the most challenging thing has been my relationship to my body. I’ve stepped back from a lot of my medications and lowered my treatments quite a bit, so it’s a bit disorienting. Pre Trikafta, taking care of my body was very centering and it helped me frame how to go about my life.
It’s been three years since starting Trikafta and I still find it hard to navigate this empty space/time without having to be so vigilant!
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Oof, this is a great question. There’s so many unnecessary hurdles within our healthcare system. One that comes to mind are prior authorizations. I don’t know if I have any tips, but moreso I wish that a doctor’s order would override what is deemed medically necessary by insurance companies!
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Glad to hear you are recuperating and the kidney stones are out — let yourself rest!
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Our body’s in house filtration system! They really don’t draw a whole lot of attention until they do. I’ve had a few run-ins with kidney stones alongside an autoimmune disease (henoch schonlein purpura) that caused me to be super cautious of my kidney function.
Perhaps it would be worth it to look into Chinese/ Eastern medicine’s interpretation of the kidneys?
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Hehe, thank y’all! I am excited to be back!
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For me, I find myself to becoming a lax but aware germaphobe… I think of airports and hospitals most often. I usually try to avoid hand contact with anything. Purell everything. Wipe an area with clorox wipes. But, in more daily and mundane experiences — I am a lot more lax, and almost find it to be liberating and an act of defiance to hold a door handle, and as I get older I feel even more wild. Sometimes I don’t clean neb cups between uses, have had them fall on the floor. I don’t recommend that to anyone, and I trust myself to deal with any repercussions I carry. But, those little defiances remind me I am human 🙂
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Love it! Triple combo is … 😉
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Hi @rhealawton I am so sorry to hear about your husband, but what an incredible life — 51 years old. Thank you for sharing, but actually the photo is not appearing! You’re more than welcome to try reposting in a different format, or should you want to add my on social media (facebook or IG) and send me a photo through there, I would love to post for ya!
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@jpaul I think you make a lot of good points. In a lot of ways, I agree — allowing yourself to identified by what the world groups you as and allowing that to bother your, gives the world more power. When, you indeed, have the power to decide.
But, I also agree with @tre-larosa on the importance of language. I think language and how you approach is also a reflection of joy, love, compassion, and truth. And, it can be done in a way that respects how the other person chooses to be identified — CF’er person with CF, etc. Part of being human is balancing the ego and the soul. Ultimately, kindness and respect are what is important 🙂
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Oh dude, this is a tough one. I think on one hand, I realized a while ago that asking “why me?” wasn’t doing me any service, but making and allowing me to feel self pity and almost lesser self worth? At the same time, I started (and this is just me) finding my own sense of spirituality and something greater than this world, I guess in a lot of senses “God” and reason, and learning to trust that. Perhaps it’s denial, but it’s also allowing me to accept that for some reason, I AM alive and faring well. And, maybe I can create something wit my time here, or empower other people with CF. Sometimes it’s just being there for my friends, or doing something to “help” communities that don’t have as good resources. So, I guess for me. I’ve learned that maybe being given a day is a gift in itself, and it’s not my place to question, but uphold it.
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Hi Bronwyn, thank you so much for sharing your diagnosis story. I am so glad your doc was able to get you a diagnosis — that is wild to hear you have such a rare mutation. Do you believe your scleroderma affects your CF related health (or vice versa)? Sending you good vibes!
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That’s incredible! I am glad your brother-in-law had you to nudge him towards diagnosis. I don’t believe there are any known diagnoses in my family. And, to my knowledge I only had a great aunt (passed in the 80s) who demonstrated signs of CF, but of course no one knew why she had chronic lung issues.
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Welcome Travis! I think it’s so interesting (and I imagine so difficult) that y’all had such a cluster of diagnoses! I agree, it is crazy to think of all the folks who have CF and aren’t diagnosed. Years ago it was almost unheard of to have a diagnosis later in life, but I am seeing more folks being diagnsosed.
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Hi Stacy! Yes, I think identifying the CF gene has certainly helped in diagnosing more folks who are older. I hate to hear that you’re having so many frustrations with your care team — where is your CF clinic? Are you able to see another team?
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Tim, that’s incredible! I hope Trikafta gets approved soon — what was your wife’s LF at diagnosis vs now?
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Woah, it’s wild to think you were able to serve in the military for so long! Did you have any lung issues before the year leading up to diagnosis?
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I agree! My pulmonologist framed that for me at a young age, saying that every single cell in my body was affected. I now take this everywhere I go. I also wish folks would acknowledge the mental impact!
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I agree! It sounds like you are really pushing for yourself! It’s tough and I think the pandemic has made medical settings even more frazzled, but we need to use our voice!