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    • #22626

      We’ve talked a lot about cold and flu season amongst our pulmonary fibrosis (PF) forums community throughout the past few months. According to the CDC, we’re right in the midst of flu season which typically peaks between December and February each year. The influenza virus this year seems to be more intense and are lasting longer than I remember from previous years, which is not good news for those of us living with compromised lungs.

      As many of you know from my columns, I contracted both pneumonia and the influenza A virus in November, which has wrecked havoc on my lungs. I’ve lost a total lung function (some PFT values affected more than others) of 11% which is likely irreversible. I also am starting the transplant evaluation to obtain a baseline of where I am now and where I need to be to receive new lungs. This doesn’t mean I’ll be placed on the waiting list yet, but it is for my physicians to have a better understanding of all aspects of my health since this setback. Due to all of this, I am no longer taking any chances with germ exposure.

       

      I am pretty stern on protecting myself from germ exposure anyways, as many of you know but I’ve decided that I’m no longer leaving the house without my mask and will be carrying around Clorox wipes as necessary. You have likely heard of the new novel coronavirus from China now reaching the US and it’ll only be a matter of time before it comes to Canada. That terrifies me!

       

      The one assumption I hate when I wear my mask is that others think you are the one who is sick, not the one protecting yourself from getting sick. I want to wear a sign attached to me that says: “not contagious, but protecting myself from getting sick” to avoid the looks/stares that come from wearing a mask in public. I know I need to set this aside, but as a young adult who is otherwise healthy, this can become uncomfortable quickly.

       

      How do you deal with the awkwardness of wearing a mask in public?

      Do you let it bother you?

      Do you inform others about why you’re using it?

      Share your thoughts!

       

    • #22631
      Nan
      Participant

      Hi Charlene, when I was in China in 2018 so many people there were wearing masks, it is a fashion statement. You can go into stores and buy all kinds of colours and designs, I can get my son to bring you some :). He is coming to visit but he is no where near the area with the infection. My son and his wife live in the far north. They will be going through fever scans at the airports as they come here and are aware to not come if not feeling well at all. I am sorry about your lung function loss 🙁 damn disease!!

      Take care\Nan

    • #22637

      I know exactly how you feel. Everyone walk away from me as if I’m going to contaminate them. It’s something I have struggled with too. I’m finally realizing it’s ok. I’m doing this for me. I wonder if we should right on the mask itself that we’re just protecting ourselves& not contagious. 😊

    • #22646
      Regina Bolyard
      Participant

      Awkward…yes. But I was heartened to see a young cashier wearing both mask and gloves at a supermarket yesterday although she did not appear to be ill. I usually wear a scarf I can cover my face with, at least since getting diagnosed with PF a few weeks ago. I have gotten some quizzical looks while shopping, and even in doctor’s offices. But since having a protracted respiratory infection recently, I’ll do what it takes to protect myself.

      My Vogmask should arrive today and I intend to wear it whenever in crowds. I don’t really care so much what strangers think, but I will speak up to put their minds at ease if they seem unsettled by sitting next to me in public places. It is actually among friends where I will feel uncomfortable wearing a mask. I have been telling them for years that I cannot tolerate most fragrance. I didn’t know what was wrong with me and I’m sure some of them who haven’t known me very long thought I was attention seeking. It doesn’t help that a brassy, sassy mutual friend with chemical sensitivities at times seemed combatant about defending personal space. I am much more meek and I suspect people don’t take me seriously. I’m not planning on sharing my medical information with everyone I know, so It’s going to be interesting.

    • #22648
      Connie Lum
      Participant

      Hi Charlene,

      I know exactly how you feel. I never wear a mask in public if just going around town but I should change that habit. I am leaving for a 15 day cruise to Hawaii. I am taking a N95 disposable mask but not sure how often I will wear it. What are your recommendations and those of others reading this? Will you wear it every time you leave your cabin? I guess I should just get over what I look like and how others see me. I continue to be a symptomatic and would like to stay that way for awhile. Love these forums. Thank you. Also this corona virus is frightening.

    • #22659

      Hi Nan,

      Thanks so much for writing and sharing your experience with us regarding the masks! I tried to take the approach of stylish too when I bought mine: it is pink and black with designs on it. Doesn’t reduce the feeling of awkwardness entirely, but it does help compared to a regular surgical mask. Hope you have a great visit with your son and that their travels go well. Don’t tire yourself too much and thanks for your kind words about my lung function!
      Char.

    • #22662

      Hi Karen.

      Thanks so much for writing and letting me know you share in the awkwardness of wearing your mask in public, though I wish neither of us had to deal with this! You’re right in your approach though, we need to do this for us and remember that as our primary reason for doing so. I’ve thought about writing right on my mask: “I am not contagious, I am protecting myself”… maybe it’ll turn the stares away? Worth a try 🙂
      Thanks for writing! Charlene.

       

    • #22663

      Hi Regina,

      Thanks so much for writing and contributing your thoughts to this important topic. I wonder if that young girl was protecting a compromised immune system? Kudos to her for wearing those items in a very public environment. It is important for us to do this, despite it being difficult and that is what I always need to remind myself. Sorry to hear you’re also dealing with a respiratory infection. Hopefully your Vogmask will help with friends and strangers, but I am glad to hear you are willing to speak your mind with their suspicious looks. It is so hard to do this, but so important. Sadly, I’ve lost significant lung function because of pneumonia and the flu, which I likely can’t regain. I am taking the mask-wearing seriously now, but it is uncomfortable. Hang in there!
      Charlene

    • #22665

      Hi Connie,

      Thanks so much for writing and sharing your thoughts on this important topic. It is a hard one, isn’t it? I would always intend to wear a mask – say to Costco – but then I’d get there and just be uncomfortable so I wouldn’t pull it out. My Vogmask is always in my purse and I need to just get used to wearing it. Good idea to bring a mask with you on the cruise with contained germs! Hawaii is amazing – I was there for a month in the fall and I fell in love with it. Just so beautiful!

      In terms of where I’d wear the mask – I wouldn’t necessarily wear it as soon as you leave your room/cabin as the open air will help with germ exposure but I would wear it in more enclosed areas, such as smaller dinning areas or kid zones. Does this help at all? Glad you continue to be a-symptomatic and I hope that continues for you too!

      Take good care and yes, that virus sure is frightening! I am flying next month and doing what I can to avoid the airports on ‘high alert’ but sadly I think the amount of possible exposures in various airports around the US is just going to increase. I continue to read up on it regularly.

      Charlene.

    • #22674
      David Ota
      Participant

      Hi Charlene

      After 5 Years of IPF and 4 years of Lung Transplantitis, I still feel a little self conscious wearing a mask. (RZMask can make a real fashion statement)

      Mainly I have come to embrace wearing a mask, I enjoy scaring small children and my fellow Southwest Airline travelers.  I wear a mask on an airplane as if my life depended on it 🙂 During boarding, I try and cough and sound really sick.  I cannot tell you how many times the seat next to me is the last seat taken.  Granted, I an not young and trying to look good with a mask and a chronic lung disease.  Looking like me, that may be asking a bit too much.

      I’ve been told I look like Bane wearing my mask.

      Probably not a compliant to a young lady, but great for keeping the middle seat open.

      When IPF and the new Lungs give me lemons, I throw them back, take comfort in my awesome ability to deny the most obvious health and memory related problems.

      When all else has failed, and I am left with just reality to deal with… I’ll let you know when that happens 🙂

      Dave

       

       

    • #22692
      Nan
      Participant

      My son and daughter in law are not coming to visit. She is a nurse in China and all vacations for nurses and doctors cancelled. They now have a few cases where they life in the far north. Everyone is.wearimg masks now even here in Waterloo.

    • #22706

      Hi Nan,

      Thanks for writing and providing us with an update on your son and daughter-in-law’s visit from China. I saw on the news this past Saturday about the first case of the virus being detected in Ontario, and do think limiting visits is wise. I know they don’t live near the suspected area, but it’s just so risky. Sorry you can’t visit with them though, I would imagine you were wanting to do that. Stay safe, this is a bit of a scary time. I know the virus isn’t necessarily worse than the flu but for those of us with compromised immune systems, it wouldn’t be good.
      Take care, Char.

    • #22738
      Karen Martin
      Participant

      Why should we care what people think?  If they want to believe I have something contagious because they don’t know my situation with IPF, that is fine with me.  People who do know me will understand.  All of the grocery stores offer disinfectant wipes for the carts around here in VA.  There is a large population of students and professors from other countries in our area, as well, so I feel pretty certain it won’t be long before the coronavirus is in the area.   I try not to judge other people’s behaviors and hope they will not judge me.  I say this not to be nasty, just realistic.  The world is a much smaller place these days and it behooves us all to try to keep ourselves and others healthy when we can.  Karen

    • #22740
      Rayna
      Participant

      My son wears a 😷 on the school bus or any other crowded places or when there are people around him coughing or sneezing.
      It is embarrassing for a teenager, but he knows it is to keep himself safe especially since he just got out of the hospital from a dx of flu, RSV and possibly pneumonia ( they couldnt tell if it was pneumonia or scar tissue on the xray).

      i want a mask that says, “Not sick, u r.”

    • #22754

      I don’t think your reply was nasty at all Karen – very realistic, and I hope I can have as much courage as you not to care what others think. Life is too short! Unfortunately, there are a lot of judgy people out there, and everyone seems paranoid about this coronavirus. Even more the reason to keep ourselves protected I guess. Thanks so much for sharing your thoughts and happy mask-wearing! 🙂
      Charlene.

    • #22755

      Hi Rayna,

      Thanks so much for writing and I hope your son continues to do okay! So sorry to hear he’s been sick recently. I have as well, and its just wrecked havoc on my lungs. Glad your son is okay with wearing a mask, that is our best defence especially this time of year. Good for him!
      Charlene.

    • #22758

      Oh Dave, this made me laugh so hard which I really needed after a tough day! I so envisioned a comedic voice as I read your reply, and glad you could shed some light and humour onto the topic of being awkward in public wearing a mask. I need to embrace it like you do! I also like my space on airplanes, so your tactic may be worth a try for an upcoming flight I have 😉

       

      Thanks so much for writing and love the photo as well!!!
      Charlene.

    • #22761
      JillT
      Participant

      I only wish I could buy a mask to wear – thought I’d better start after the new virus scare, but pharmacy tells me they’ve sold out, as have most outlets. They have more on order, but no idea when they’ll get there. Seems like people are panic buying. Yet, I’ve only seen 1 person wearing a mask recently, so no idea who is buying them all. Bit annoyed that they didn’t actually keep any in reserve for immune compromised people who have a greater need, but maybe I’m being unrealistic.

    • #22767

      Hi Jill,

      I’m so glad to see a post from you and that you were able to get a reply to work. This forums are so finicky sometimes…. keep me posted on any other issues you have with them, so we can work through them with our tech team, okay?

      I don’t think you are being unrealistic at all, what a good idea to reserve/set aside some masks for those who have immune conditions. The pharmacy holding the masks would be able to verify their condition based on the medications they are on. Frustrating that you can’t get ahold of any! Do you have an Amazon account? You can order masks on there, including the Vogmask (which is what I wear) to be delivered right to your home. Worth a shot maybe! Thanks for writing.
      Charlene.

    • #22782
      Karen Martin
      Participant

      Thank you, Charlene, for not thinking me nasty for my comments.  I am a lot older than you, so some things come more easily now than they used to.  I see people wearing masks in lots of places.  Whether they are wearing them to protect themselves or others really doesn’t matter.  There are wicked things out there and some folks are more fragile than others when it comes to dealing with them.  We just all have to decide what is important to us and do that.  They made band-aids with cute designs, maybe we should decorate our masks!  🙂

      Karen

    • #22796

      Hi Karen,

      No problem, I know how difficult all of this is to navigate and you’re right: sometimes we just have to not care what others think. I need to get better at doing this myself! 🙂 Good idea re: decorating our masks. I have one of the vinyl cutting machines (Silhouette) and am thinking of a clever saying to put on it when I fly to California at the end of this month because I will be masked from door-to-door in the airports! One of my colleagues suggested: “it’s not me, it’s you” which made me laugh!

    • #22835
      Karen Martin
      Participant

      Charlene,  I like that for your mask.   It has taken me many years to come to the point of not worrying too much about what other people think.  We really have no control over that.  If it is a matter of protecting your own health, then that should take priority.  I have found most people really are not too concerned about what I am doing.  I have had a few shy away as if they are afraid of me, but I have found that a nod and a friendly wave and “hi” seem to be enough to take the edge off.  In the long run, we can only be responsible for ourselves.  Take care of yourself.  🙂

    • #22840
      Burma
      Participant

      If I feel the need to wear a mask, I do and I really don’t pay any attention to anyone’s opinion. They aren’t fighting to breath! I use a VOG mask. A little pricey but worth it. Although, I don’t wear my mask into the bank. Don’t want to scare anyone. LOL I also purchased two “Gators” on Amazon, which work well. (You can also pull the back up to cover your head like a hat.) They slip over your head, around your neck and you can pull them up to cover your nose and mouth when needed. They aren’t as noticeable as the masks.

      Charlene, one other idea having to do with showering with Oxygen. Purchase a long terry-clothed robe in your favorite color. Put it where you can reach it from the shower and when you’re done with your shower, put the robe on. It acts like a towel and keeps the chill away as you step out of the shower.

      I do enjoy reading all the ideas and comments from our fellow patients and caregivers. They have helped me so much through this dx. (IPF May 2018, currently on Ofev and oxygen 24/7)

    • #22843

      You’re absolutely right, Karen! If I get a chance to add vinyl to my mask before my trip I’ll be sure to send a picture 🙂

      Also, for those looking and have discovered that Vogmask (Canadian and US sites) are sold out due to fears of the new corona virus, Cambridge masks are very similar and seem to be in plenty of stock (or was when I last checked).

      Charlene.

    • #22846

      Good points all around Burma! Nice to hear from you, thanks for writing.

      I need to adopt that attitude about not paying attention to anyone’s opinion – although, since talking about it in this group, I am getting better about it. I love my Vogmask as well, and can’t believe due to global demand they are sold out. I suppose that is in response to the coronavirus right now. I’ll check out the gators you recommend too – I bet they’d help keep me warm in the -20 degree weather here in Canada!

      I’ve heard of these terry-clothed robes, I need to find these because I get cold really quickly and would much rather step into a cozy robe. Thanks for the idea 🙂

      Hang in there Burma – we’re always here. Glad to hear the forums are helpful to you.
      Charlene.

    • #23441
      Nan
      Participant

      We are seeing on the news people around the world wearing masks. My son in China tells me that if you go out without one they tell you to put one on. Here were are getting mixed messages about to wear or not to wear the mask even from my employer, the ministry of health. Yesterday I went to get dog food. The store is in a strip mall with a grocery store and there we tons of people coming and in out and I saw no masked. I wore one into the store, there was only one other person it there. The cashier asked me why I had a mask on. I told her I had a lung disease that makes me vulnerable. After I left I thought it odd that she was doing nothing to protect herself, no gloves, no gown and touching the debit machine. I felt extremely awkward. I plan to stay home as much as possible. I told my manager I am working from home and they are good with that. Stay home people and stay safe.

    • #23443
      Chuck Harrison
      Participant

      Hi Charrlene ,

      i remember having this talk with you many months ago . Since October 2019 I’ve worn a mask nothing exotic just plain surgical mask  ( all different colors ) but wear them just the same . I have never once noticed nor can I say I can care less what others think of me . My life , not theirs , my comfort not their . I believe now with this virus people should start wearing them . I expect designer masks will be out soon .

      miss you much , and think of you often

      Chuck

    • #23488
      Dennis Rowe
      Participant

      Hi Charlene,

      i just celebrated my 1 year anniversary of my bi-lateral lung transplant!

      I’ve been wearing masks in public for many months, since my release from the hospital.  Initially I was very conscious of people looking/staring at me.  Not so much anymore.  I still sometimes mention to them I’m not contagious, and I’m only trying to protect myself.

      Little children sometimes look scared when they see me.  I always give them a cheerful hello, and tell the older person with them I’m not contagious. In the current time frame the mask is more important than our own self consciousnesses!

      Thanks for all you do for us in your column!  And remember, the only cure for Pulmonary Fibrosis is a transplant!  Hang in there!!

      Dennis

    • #23554

      @chuck-harrison

      Hi Chuck,

      Thanks so much for writing to me and sorry it’s taken me a few days to reply. I’ve been a bit unwell myself. You are never far from my mind though, sending you much love and thought daily as I know this disease has turned quite cruel on you my friend. How are you doing now? I know that amazing spirit of yours is probably shining through still, even though I know how hard this must be for you! You’re very right that we needn’t care what others think of us wearing a mask, especially with news of this virus. Just so very scary! Thinking of you lots Chuck and missing you too. Please chime in when you can!

      Charlene.

    • #23555

      @dennisr13 ,

       

      Hi Dennis!
      Congratulations — thank you so much for writing to us and letting us know how you’re doing 1 year post transplant. This is excellent news, I am so happy for you! I may message you privately about the experience, as I am facing that as well. I hope this gift of life has been transformative to you!

      I think on some subconscious level I tell people “I’m not contagious, I’m protecting myself” to make myself feel better, along with those around me… I did it many times on the plane ride home from California as people looked at me in an odd way. It’s interesting what we do when we perceive the reactions of others. I try to say it doesn’t bother me, but I think maybe in a way it does.

      Thanks so much for writing Dennis and congrats again! So happy for you.

      Char.

    • #23612
      Miltont
      Participant

      I have a high degree of “not giving a damn ” I guess but I am not the slightest bit self-conscious about wearing a mask. If I need to protect myself that is my business and no-one else’s. Be strong, people. You must care for yourself.

    • #23613
      Mark Koziol
      Keymaster

      Hello Miltont, I agree with you 100%. Thanks for chiming in, Mark

    • #23624
      Dennis Rowe
      Participant

      Charlene,

      I thank you for your reply to my post!

      If you care to private message me as you go through your preparations for attaining a transplant, and post transplant recovery, feel free to do so…I will be happy to help any way I can…

      Stay strong,

      Dennis

    • #23642

      @dennisr13

      Hi Dennis,

      Thanks so much, that really means a lot to me! I am a bit overwhelmed with information right now – have you heard, a few transplant centres are not doing organ transplants right now with the COVID-19 pandemic? It’s crazy! Once I get my head a bit more “back in the game”, I will be sure to reach out. Hearing about the experience, along with suggestions/tips/tricks from others is always really helpful. I appreciate your willingness to share with me.

      Be well,
      Charlene.

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