Christie Patient
Forum Replies Created
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Absolutely Deb. There are several open threads on this topic already if you want to read what others have said (plug keywords into the search bar in the top right of the page), but you are more than welcome to use this space to start your own discussion about it.
Per our forum policy, we don’t allow discussions about self-harm or violence to others, or discussions that promote self-harm or suicide. This includes discussions about death with dignity. Otherwise, all end-of-life topics are welcome here. It’s a safe place to talk about that part of the PF journey.
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I’m so very sorry for your loss Sam. I would love to hear more about Larry’s life if you feel like sharing with us so we can help you remember him. What a painful, yet beautiful gift that you were able to share this PF journey with such an old friend. Not the club you want to be in together, but I’d be willing to be your experiences brought comfort to each other. Hugs,
Christie -
As a reminder to all reading this post, please check with your medical team for starting any supplements, OTC or naturopathic treatments, especially if you are 1. diagnosed with an autoimmune disorder 2. immunocompromised, or 3. taking any other medications.
Antibiotics are contraindicated with the use of OFEV. My mom had to take mega doses of antibiotics after her appendix ruptured, and she had to completely discontinue OFEV while she was doing that. This whole chain of events lead to the acute exacerbation of pulmonary failure that almost ended her life. Take it from me, supplementing or taking things that change your immune system is something you should experiment with without close supervision from your doctors.
There is an extensive thread on the use of serrapeptase and nattokinase here if you want to read up on that, especially Steve Dragoo’s contributions, but again, do not start anything without talking to your doctors and/or pharmacists.
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The link was posted on this thread, by me, on January 10th. It’s also been privately messaged to everyone who asked by either Wesley or myself (or both, perhaps). But since it keeps coming up…
HERE IS THE ZOOM RECORDING LINK
Reminder! Please do not post your private email address in the forum.
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Hi all, just a friendly reminder to ask your medical team and refer to trusted sources when you are researching alternative therapies and “miracle drugs”… medical journals, scholarly articles, university studies, etc. are all good sources. Google Scholar and PubMed are good sources to start with and have many free articles and studies to read.
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So sorry for your losses Kim. Thank you for sharing their names with us and letting us remember them with you. Were they all PF patients?
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In a year that has been defined by great personal loss, it’s good practice to reflect on the good memories. Thanks for this Charlene..
My favorite memories were from traveling to Scotland. It was the first time my husband and I traveled abroad together. We saw so many cool things, hiked in the highlands, ate a ton of good food, slept in a hobbit house on the Isle of Skye, saw Queen with Adam Lambert, and sampled far too many beers from far too many pubs. It was wonderful to finally be able to treat ourselves to a big adventure (all those years of picnic dates and camping “vacations” finally paid off haha).
As for 2023? In the near future, my extended family will gather here in Hawaii and we will have a little family reunion. First time in a long time we’ll all be in one place, and I am looking forward to that.
Happy New Year everyone!
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So very sorry for your loss Tracy. Thank you for sharing the news. You’re welcome to talk about Sandy here any time and we can help you remember her. Hugs,
Christie -
I have noticed your tattoo Sam, and like it very much 🙂 My version of that is “plant the damn garden”, which my friend Kathleen (a heart and lung transplant survivor, and the friend who got me started here at BN) made into a cross-stitch wall hanging for my office.
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That is wonderful. Full of nostalgia. Funny how some things about childhood are universal, no matter where you grow up. Thank you for sharing. I’ve read it aloud several times trying to get the accent right.
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Your poem is lovely Desmond. I could really see the characters in my mind, walking together, mirroring each other. I like the idea of death walking with us, and within us from birth til the end. Whether we acknowledge it or not, it’s just as much a part of us as the living. Two sides of the same coin.
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Rilke! Yes! Oh, my people are here in this forum. Have you read his Letters to a Young Poet?
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Janet, if you could pick a favorite Mary Oliver poem (or two) what would it be? 🙂 I also love Wordsworth–one of my first poetry loves back in middle school I think. Kind of wordy for a tween, but I was hooked. I haven’t heard of the others but will have to check them out.
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Joe! I would love to read some of your favorite T.E Brown verses! You are from the Isle of Man right? I know the dialect is probably different but I spent some time in Scotland this summer chatting with highlanders, islanders, and Glaswegians (take your pick which is the hardest accent for an American to understand haha), and am learning Gaidhlig, which I know is different from Manx but I reckon I could get by.
I also am a fan of Robert Service, as a descendant of Western settlers, especially. But I admit I haven’t dug much into Kipling. There isn’t enough time in life to read all that I want to read. A shame.
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Love this Sam. Us too. <3 We've never heard back, but keep on writing our love.
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Hi Sandy, not sure if you are taking any other medications, but prednisone can also cause joint pain (or make it better! just depends on who’s taking it, it seems). Definitely worth having a rheumatologist on your team since your inflammation markers are rising. I don’t know what tests they did on you already but might be worth repeating.
Please do keep us posted if you find anything out or have any changes.
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So sorry you had to deal with that Donna. Our system is so broken, it makes being chronically ill a full-time job. I wish I had some advice, but alas… just sending hugs. I hope you can get it sorted out.
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Wow, that’s really scary Randy. I am glad you got home safely and got your home oxygen on to recover. I had heat stroke while I was at a grocery store once and it was just like what you described. I could hardly see. I sat in the car with the a/c on and drank a huge cold water before I could drive but I was still having problems 30 minutes later when I got home.
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I love your mantra George! I feel the same way–Team Shark! Gotta keep the water flowing over the gils as long as we can, huh?
Good suggestions with the chair yoga and seated boxing… do you have suggestions on where to find free seated boxing routines? I’ve never heard of that, but it sounds interesting. Also love the VR idea! Very high tech, but if you can gamify exercise, that’s always a good way to keep it interesting and appealing when discipline falters.
Sending tropical vibes your way
Christie
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Hey Adelaide! I have felt like you feel for much of my life, and the epiphany for me came from my therapist telling me I should start talking to myself like I am my best friend. I am, after all, my oldest friend, so I might as well be my best friend too. It takes a lot of practice, but it has changed my life to adopt this mindset. Now, as for reactivating motivation.. for me, step one is related to that.
1. I look at working out as a treat for my body. I try to think of it as a way to say “I love you” to myself. I know that starting to exercise again when you have fallen out of a routine sucks. It just does, so getting over that is starts with a mindset shift. I like to sit and think about how I have felt in the past when my workout is over. What comes up for me? I feel proud, I feel stronger, I feel more flexible, I have less pain in my back, and it makes it easier to sleep well… So I try to fill my body up with those good things, and then it is easier to start. Because I’d rather feel like that than like *this*.
2. I tell myself not to have expectations. I won’t be where I was when I stopped if it’s been a while since I worked out, so I just set the bar low and make a deal with myself that anything is better than nothing. If it’s only ten minutes? That’s better than zero. Tomorrow, maybe We’ll shoot for 12 minutes.
3. I heard once that you have five seconds to decide to do something… like, if the thought to work out comes into your head and you don’t say “yes!” within five seconds, you won’t do it. So if I have some free time and a little voice says, “hey now might be a good time for a walk or do some yoga,” the clock starts ticking in my head. If I don’t start moving to put on the right clothes, or pull up a yoga video, or whatever it is I need to do to get started within five seconds, it’s not happening at that time… and boy can we waste a lot of the day five seconds at a time, especially with the distractions of the phone, the ipad, the book.. whatever it is that keeps you on the couch.
I hope this helps! You’re doing great 🙂 Hugs
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Indoor bike or treadmill is a great addition to the house for those in cooler locales! Glad you are able to walk outside for now though 🙂 Thanks Sam
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Hi Donna, I found this webpage with a lot of information on how to start using your VA healthcare. There is a link at the top that is meant to help you determine your eligibility, and several ways to apply once you know. Should be pretty easy if you have all your information handy. Best of luck.
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Medications are a part of living with this disease, and therefore are an important topic of conversation on this forum. Patients come here to share experiences, seek advice on how to deal with adverse effects, or even get advice on how to address issues with their doctors when their medications aren’t working well.
I know that to a new patient, reading some of the conversations about ofev and esbriet might be a little off-putting, but our hope is that the new patients take the information they read here to their doctors and use it to have a more informed conversation about the medication options available to them. Knowing that changes in mediation dosage/routine may alleviate the side effects might help patients advocate for themselves with their doctor. Reading about topics like what foods help people tolerate medications might help someone overcome their side effects.
Yes, the side effects can be nasty, but each of us will only know how we respond to medications if we try them… And you can always choose to stop if you start and it doesn’t feel good. Ultimately it’s up to each person and their medical team to decide what the best course of action is.
Charlene and I do moderate the forums to prevent any inappropriate discussions about medication usage, medical misinformation, medication scams, etc.