December 27, 2018 at 3:52 pm #15800
Back in September, my late friend Serena Lawrence made a social media post that she was dying. She passed only a few days after that from complications of Pulmonary Hypertension (PH) and PVOD. I, along with the entire BioNews community miss her terribly and I’ve been thinking about her and her family so much this holiday season. Its hard to believe that 2019 will be starting without her…
In that public post, she wrote something that has really stuck with me as a patient living with idiopathic pulmonary fibrosis (IPF). She wrote, “at the end of this, please don’t say I lost my fight or battle with some disease, because I didn’t (nobody does). Death is just another part of the journey, unfortunately”. Yes, wasn’t she incredibly wise and brave at just 30 years young? I’ve been thinking a lot about this fight mentality that we often say in the context of someone who has passed from a disease. And, in my personal opinion, I think we should stop using it but I completely respect and understand others might think differently.
A few days ago I saw a topic being shared around social media about the debate of what people should say when referencing someone with a chronic illness. More specifically, the debate was: should we say “living with” an illness (ie. IPF) or “fighting against IPF”? I tend to use living with, but that is just my choice and others might feel like they’re in the fight of their lives and find those words more empowering to them, and that is okay. Both options are okay!
That said, I am very curious what your preference is in this debate. When talking to others, or referring to your journey with IPF/PF, do you say: “I live with IPF” or I am “fighting IPF”?
Let’s have some friendly discussion here about your thoughts on this topic and the debate that seems to be engaging many of us living in the chronic illness community. I’d love to hear your thoughts on this topic!
December 27, 2018 at 6:39 pm #15837Sandra VanzylParticipant
…..so sad to read Serena’s writings. Fight or flight ….when we are chronically ill as much as we want to try to keep exercising and keep up with daily in home jobs it does become very difficult and so very tiring in and of itself. As we prepare our move to Toronto for transplant I am somewhat worried about the physio that i will attend 3 x week….I want to be as strong as possible but also am doubtful of how long I can walk on the treadmill with oxygen at 10litres …..I hope I am over worrying about nothing..I bought the Book from Amazon written by Robert (president of lung transplant fundraising) he was so ill that he had to sit down when going from his bedroom to his washroom) I can only imagine that he wasn’t able to do very much exercise wise . I guess we will find out more on the 14th …Robert had a successful lung transplant and I will go with that for now !
December 28, 2018 at 11:43 am #15859
Thanks for writing, and sharing your thoughts on this topic. It’s a tough one and I’m always curious to hear how others approach life with their disease. Serena was really special to all of us working at BioNews and I thought what she wrote in one of her very last social media posts was powerful, about not losing a fight to an illness. That said, I am very aware others might feel differently and respect that too!
I hope your worry is quieted when you get to Toronto and they help assess and prepare you for the physiotherapy. They’re very good I’ve heard, and will adjust your oxygen needs accordingly and prepare you physically as best they can for transplant. Prayers that you feel comfortable and safe within the care of your team at Toronto…. I am keeping my fingers crossed for you!
Thanks for reading her writings, I sure miss her and still can’t believe 2019 will be starting without her.
January 1, 2019 at 10:38 am #15926Steve DragooParticipant
Hi Charlene – I appreciate your post regards your wise friend. She and you made me think about this. We do all have an expiration date – at least temporarily, and I never walked through life saying I was fighting life. Although to be sure we have plenty of obstacles thrown at us, most we never anticipated.
So when first diagnosed with IPF I wanted to shut the door, pull the curtains closed, and cover up with the sheets. But I decided to live and brag about my expiry date since no one knows theirs but I do (sorta). Creates a great sense of urgency and that can focus the mind on whatever goal we decide is relevant and important. That’s what I’m doing, remaining relevant and looking for undiscovered viable opportunities to fix IPF and share all I know. Successful year to you and all here living with the same certainty -lung fung – slang for I don’t know how to fix it but somebody does… SteveD
January 1, 2019 at 8:15 pm #15939
Thanks for your reply on this topic, I am always interested in hearing from others about this! Thanks for your kind words about Serena, she was so talented and a wonderful person. Hard to believe the new year has begun without her, although I know, as you say, we all have an expiry date (some sooner than others).
I like your approach to ‘knowing your expiry date’ and choosing to let it influence how you live your life, in a positive way. I can certainly understand that, knowing that I don’t have “forever” (no one really does, but I’m sure you know what I mean…) I try to feel less guilty about prioritizing things that make me happy, over others, or that others may be able to put off for another decade, whereas I don’t feel like I can. I like to travel, and some people wonder why I am in such a “rush” to see the world, and I am very candid when I say that my life expectancy isn’t as long as theirs, there is no point in hiding that from anyone I suppose, right? In the meantime, I am also trying to learn as much as I can to help aid me in living my longest and best life with this disease so I suppose I prefer that over “fight”, like you. Thanks for sharing and wishing you nothing but the best in the upcoming year!
December 28, 2018 at 9:12 am #15845
I prefer the phrase ” fight ” why ? Because , if I have to live with a terminal illness , well I’m going to fight it for as long as I can . It’s my nature , it’s just me !
December 28, 2018 at 11:45 am #15860
Hello my friend!
Great to hear from you – how were your Christmas holidays? Anything planned for New Years Eve? I am looking forward to a quiet one I think this year; not really wanting to do much or venture too far from home.
Thanks for contributing your thoughts to this topic, I’m always interested in hearing what others think about the “fight” or “living with” fiasco that is referenced when talking about chronic illnesses. Your approach makes sense, and glad you are continuing to fight IPF!
December 28, 2018 at 1:31 pm #15869
Well Christmas was good , guiet , very quiet . , as far as New Years I haven’t celebrated that for what seems a million years ( lol) .
January 6th all the kids and grandchildren will be here , that will run me down somewhat . But it will be fun .
So do me a big favor , if you go out new yrs , please be careful !
So these past weekS I have been in a desperate battle with dizziness , headaches , arthritis , I’m up to 4 liters 24/7 plus a Miryad of other personal battles ( sensitive in nature ) .
The one thing that helps is this blog , I have been able to unload and reflect on. Many things . Again my reflections tend to focus not on me all the time , but on people like you , I wonder at times how you made out with your job , how was your little bit of a holiday in New York , stuff like that , but I will keep fighting until……! There’s so much
To talk about with this disease , your actually the only one other than my self who has this .
Well I must go now ,
Truly your friend,
P.s. I know there’s a lot of rambling in this , but I need to organize lol
December 30, 2018 at 8:46 am #15883
Great to hear from you and really glad you had a nice, quiet Christmas! That will be fun on January 6th when the kids are all there, tiring yes, but a good opportunity to make some wonderful memories. I had to remind myself of that when things were chaotic with all the kids around on Christmas Day. That reframe seems to help me 🙂
Regarding New Years, I actually think I’ll probably stay in as well. I haven’t celebrated in quite some time either, although a few local friends are having people over so I might go for an hour or two and then come home. My dog just had surgery (standard procedure) so I’d be glad to stay home with her, making sure she is okay and in the comfort (and warmth!) of my own home.
How is your battle with the dizziness, etc going? I sure hope it is a little better, that would feel terrible!
My holiday in NYC was incredible, thank you for remembering and asking. It was wonderful, and so many memories made. I think tomorrow (new years day) I am actually going to start scrapbooking some of the photos. I truly loved the trip and so did my Mom!
Take care Chuck, and chat with you soon.
December 30, 2018 at 6:05 pm #15900
As always nice to hear from you , always glad to hear your doing the best you can !
We are having about six people over for a lasagna dinner , I told my wife that I hoping all goes well .
Example I have not been able to crawl out of bed till almost noon at times .
I hope. Your dog heals well ,
Listen as you can see I’m typing in circles , I have something of a question for you , it’s innocent but I need to ask
Charlene how will each of us know that the other has passed ?
With that last thought I leave with you ,
Always your friend ,
December 31, 2018 at 10:29 am #15906
I noticed you changed your profile picture… love it, it gave me a chuckle this morning! 🙂
I hope this note finds you enjoying the last day of 2018, and looking forward to a great year ahead. How did your lasagna dinner go? Hopefully you aren’t too tired today but if you are, just take it easy and enjoy the quiet if everyone has left from the dinner party. During the holidays, I have spent so much time in bed and don’t feel guilty about it at all LOL. Well, maybe a little bit but I am so enjoying quiet time to just rest and relax.
Thanks for the well wishes about my pup, she is recovering well which I am so grateful for!
As for your question, it is a good one and albeit tough to think about, it is important that we know I think if one of us isn’t doing well and passes away. I’ve been grappling with this actually, as I know for sure some members of our forum have passed, although I only found out in hindsight. Any ideas on how we could know this? It is tough to think about but important for closure I think. I may ask other forum moderators too, who work with me at BioNews as I know the PH forum has lost members of their forum community before. Let me give this some thought and get back to you, and I’m open to any/all other suggestions or ideas about this too if others read my reply to Chuck. Good question Chuck, thanks for asking!
Happy New Year!
December 28, 2018 at 11:21 am #15852PatsyParticipant
A good friend said recently, “you’ve really taken the bull by the horns while you manage this disease”. So, I guess I’d also use the word fight. By engaging myself in this way, I feel more in control and have some sense of power over the limitations associated with PF.
December 28, 2018 at 11:47 am #15861
Thanks so much for your thoughtful contribution to this topic thread. It is one that I am really interested in hearing from others about! Your approach makes sense, especially if it makes you feel more in control and with some power over this disease, that is definitely important. Thank you for sharing that perspective with us!
December 29, 2018 at 7:18 am #15876Julian ArizolaParticipant
This subject touched on a lot of how I think at times. I appreciate everyone’s contribution to the subject. The debate of “living with” or “fighting against IPF” was one I never thought of. Since my diagnoses it’s been all about “the fight”. I think that can be an exhausting state of mind. I never just considered “living with” IPF. Maybe I will learn to take a day off here and there and give myself some days where I do relax a little and “live with”IPF
December 30, 2018 at 9:15 am #15891
Thanks so much for sharing your thoughts on this topic, and welcome to the PF forums! This is a great group of people here, so please feel free to connect with us any time.
Like you, I used to be all about “the fight” when it came to IPF but then I heard someone reframe it to “living with” and suddenly I felt myself let go a little bit, almost like letting my guard down and I like how that felt. It is exhausting to be in fight mode all the time, and the reality (for me anyways…) is that I am living with this disease; it isn’t controlling me bit it is always with me, per se. That said, I do flip back and forth and find value in both approaches and can respect those who choose “fighting” or “living with” IPF. I’m glad you found this topic of interest, I am always curious about how others approach life with their disease so I appreciate all replies to this thread.
Wishing you all the best for the year ahead!
January 2, 2019 at 8:06 am #15944Julian ArizolaParticipant
Thanks for your response and for heading up this informative forum.I think this conversation of “living with” and , or “fighting” IPF struck a cord in me because it reminded me of a discussion I had with my Priest a few months ago.
Letting go a little bit and “living with”IPF seems to make more sense to me as time goes bye . Through personal experience I know to “fight” constantly is, as I’ve said exhausting.
I am sure that for me I must kick back a little and look at each day as a gift; unique it all it’s 24 hour adventure.
The following is something I found just before my hospital stay in March of 2018.It gives me a perspective that ties in to this discussion.
“”Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And, with each day, my treasure will grow, not diminish.” ~ Robert Brault
Thanks again Charlene and all the contributors! Happy New year!
January 2, 2019 at 9:08 am #15952
Thanks so much for connecting with us regarding this topic – it is definitely one I am interested in hearing from others about, as everyone approaches their life with IPF so differently…
Thank you for your kind words about the forum as well, I am so lucky to be in a position of moderating it and interacting with such wonderful people. I posted the topic of “living with” vs. “fighting IPF” out of interest, because like you, I’ve had many conversations like this with other people too.
I agree with you, that living with the fighting mentality is exhausting! Glad the “living with” seems more applicable to you, it does for me for the most part as well.
I absolutely love the quote you shared below, I will be saving that one and posting it somewhere within my view regularly. It is so meaningful to me, and resonates so much and to find a quote I haven’t read before is hard to do, as I love quotes and collect them. Thank you so very much for sharing and really glad you found our forums as well.
January 2, 2019 at 12:04 pm #15962
Hi to all in this discussion ,
Why I fight , well for one I’m not going to stand by cover up and wait for my passing . There are times I just can’t get out of bed , but there are more times that I force myself to get up !
That’s the fight , is it exhauting at times but that is when I fight ( or as I mentioned to Charlene ) I power through those times .
This is the second day of a new year ( happy new year ) and I had to literally at 7am force myself to get up , by the time i got down stairs the fight was over , um I guess I’m saying one battle at a time , how happy I was to do it .
Well had coffee , sat and talked a bit , asked to get help to prepare a tank for me , bundle up and went out a did some target shooting , 😄 . And tomorrow night I will be at the Sabres game ( this will be a great challenge .
Now as you can tell I am an IPF fighter , I also fight diabetes , heart disease , tremors of a origin they can pin down ( dent institute ) dizziness haven’t figured that one out either , they called these two things sign and symptoms of an unknown origin . For me to fight is what I do ! I am a very happy man , but being human I do dispar at times , I am Chuck and this who I am !
Thank you Charlene I have learned much from you and others on this blog , as is my nature I wish well and love ,
Whew now that’s some rambling
January 3, 2019 at 8:49 am #15974
Great to hear from you and thanks for following up with your thoughts regarding this topic.
I agree with your perspective of “fighting” as well, it does make sense and I can also see the other side of using “live with”, due to the exhaustion a constant state of being in fight-mode is. It’s totally each persons preference I suppose, but I do think both sides make sense and I am curious to hear the perspectives of each. I so appreciate your resilience and strength when it comes to getting up and fighting this battle everyday. Have fun at the Sabres game!
So appreciate everything I’ve learnt from you on this forum, along with the support you’ve provided to us all 🙂 Glad you’re a fighter – and glad you’re continuing to do so!
January 3, 2019 at 9:34 am #15979Arlyn ThomsonParticipant
“Living with” is my choice. I am not in control of my disease, my God is in charge. I love the gift of life that He has blessed me with and I want to enjoy it as long as possible. Therefore, I will live my life in a manner that will make it as comfortable and happy as possible while I wait God to summon me home.
January 4, 2019 at 10:53 am #15992
Thanks so much for sharing your thoughts with us pertaining to this topic thread. It is so different for everyone, that I love hearing the varying perspectives. I’m so glad you are comfortable with the idea of “living with” as your choice, and leaving God in control 🙂
Enjoy your day and thanks again for contributing your comments.
February 22, 2019 at 8:32 am #16968Noah GreenspanParticipant
I like “living with PF.” The term. I don’t like “warriors” although many seem to. I do, however feel that living with IPF (or any chronic illness is a battle and that patients must fight. I always tell people that I may go down but I am going down fighting.
- This reply was modified 1 year, 4 months ago by Noah Greenspan.
February 22, 2019 at 10:13 am #16984
So glad you’re here, and thank you so much for your contribution to this discussion. It is always one I am interested in hearing from others about! I like the “living with” perspective as well, and you’re right: it is a battle we’re in, and I am definitely willing to fight this through to the end. I think the only caution I have with the fight mentality is just ensuring that folks aren’t viewed as “losing” the battle if the succumb to this disease. Just a thought I regularly think about, and my friend, who died of PH in September wrote about in some of her last words. Thanks for sharing, and we’re all in this fight together!
February 22, 2019 at 9:57 am #16978Keith NelsonParticipant
Interesting reading. I am sorry for those who know others who have predeceased us – sad when this demon takes someone.
I am a newly diagnosed IPF member of our PF community, just January4. Presently I am “dealing with” – not really referring to “fighting” nor “living with” – rather just dealing with it.
One response I get, from those who inquire about my health, the results of all the testing I have been doing, is “Whew, you are lucky it wasn’t cancer!”
While cancer is definitely a killer. Modern medicine has so many ways to address that evil demon. We likely all know many who have encountered that medical scourge, many survivors, some not. However, it just seems the response “… you are lucky…” vastly misses the mark. “Lucky” to have contracted a fatal disease, one that kills. One that can only, with the present state of medicine, be, kinda, sorta stopped. A disease with the only known “cure” being removing the infected lungs, replacing them via transplant.
When I receive this “lucky” response, I just shrug internally, and let them believe that I am “lucky” – it is more to my ilk, to be thought of as “lucky” than “afflicted with a tragic malady!”
February 22, 2019 at 10:17 am #16985
Thanks for joining this discussion, you raise a very interesting point regarding the comment about being thankful it isn’t cancer. Sadly, I know many others who have gotten this as well and I have no idea how I feel about it…
Yes, cancer is a killer disease as you mention but there is so much dedicated to the treatment and management of cancer in my mind, especially compared to “rare” diseases like IPF. While of course, the optimal scenario would be that no one has either of these diseases; I often think (don’t say out loud, but think it) that IPF is worse than cancer because no one understands the severity of it. I am probably wrong to think this way, but sometimes I can’t help it…
Your approach sounds like a good one, in that, we know different and if people want to think of us as lucky so be it, perhaps it is easier than being labelled as one with a deadly disease. Feel free to write this group anytime; we truly understand and get what it is like to live with IPF…. we’ll never tell you that you’re “lucky” 😉
February 27, 2019 at 8:13 am #17132Kate EParticipant
Charlene, thank you so much for raising this issue. I’ve been bothered by the ‘fight’ and ‘warrior’ and ‘battle’ language for as long as I’ve been on the various online support groups. I do understand that it works for other people, but it doesn’t work for me at all. I think that I HAVE been fighting my illness for far too long, and in many ways all it has done is to add to the exhaustion and the stress. And I find that there doesn’t seem to be much of a middle ground that’s acknowledged (in general) between ‘fighting’ and ‘throwing in the towel’. For myself, I’m aiming for that middle ground. I’m not at all ready to give up doing my best to be as healthy and happy as possible, but I also want to negotiate the whitewater rapids that come with as much clarity and discernment as I can muster. That means choosing some medical interventions and declining others, choosing some alternative treatments and not others, allowing myself to have days where I do ‘throw in the towel’ for the day or the evening, allowing myself to have a full range of emotions in response to the difficult times, and challenging myself to get better and better at finding support and asking for help without giving up that place in me that cherishes my independence.
Thank you also for responding to Lucky Keith about the ways in which it can be harder to have PF than to have cancer. I also feel that I don’t want to say that in public because people really don’t understand. I just wish that those of us with ‘rare’ diseases had more visible support.
February 27, 2019 at 7:19 pm #17158
Thanks so much for writing and contributing to this topic thread. It is a discussion I am always interested in hearing from others about, as I know the fight mentality works for some and not for others, as you say. What you wrote really resonates with me too…
I like the concept of finding a middle ground between fighting and ‘throwing in the towel’, as you say. Perhaps that middle ground won’t be something as exhausting as constantly fighting. Maybe the middle ground is doing our best? I know even that can be tiring and sometimes it might not involve the fight we have within us to our maximum capacity, but instead, just doing what we can to get through each day and not necessarily throw in the towel. I really like what your middle ground sounds like to you, and I could certainly adopt that approach in living with IPF every day. I suppose it is all about balance, isn’t it?
Thanks for also understanding about the comment regarding IPF and cancer. It feels awful to say that to people who might not understand, but that is such a gift of the PF forums… everyone on here truly “gets it”. Your comment about rare disease is timely – did you know tomorrow is Rare Diseases Day? I will be making a post tomorrow about it and hope we can raise a bit more awareness about this cruel, rare disease.
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