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    • #26415
      Jen Cueva
      Moderator

      Unless you are oblivious to news and others’ comments, you have heard much controversy about wearing a mask. As a PH patient or caregiver, we tend to be more on the cautionary side. This is for the sake of our health and our loved ones’ health.

      My take is that I will do as I feel needed, as my health is a top priority. If someone cannot understand that, that is on them.

      Have you had conversations with family or friends about masks? Have you felt like you must defend your reason? Or, does most of your family and friends agree with you that we all must wear masks to help prevent the spread of this virus?

    • #26422
      Colleen Steele
      Keymaster

      @jenc our family and friends have been 6 years now use to seeing Cullen wear a mask and they understand why. If anything they have an even greater respect for his willingness for all these years to wear one without complaint.

      Prior to the epidemic Cullen would occasionally get looks or comments from people but it never bothered him. He honestly could care less what people think. Interesting how things have changed. Now it’s him looking at strangers not wearing masks. He’s never been close enough to people not wearing one that he has had to say something to them, but that situation should happen, I know he won’t hesitate in saying something.

      Have you had any bad experiences Jen?

    • #26431
      Alfred Gronroos
      Participant

      I do not deal well with the thought/seeing people without masks. I am very lucky I do not exit my abode very often. I feel I am very vulnerable due to various illness I had the opportunity to catch. This virus seems to me to be too deadly for me to survive if I would contact it. I hope I am overly paranoid about it. In the meantime I will avoid as much contact with others as is possible. For my health and theirs. I have matured and am not a real angry Viet Nam vet anymore. I can control my anger much better. Are the people without masks out to get me?? Be safe everyone, try keep cool. And SMILE Alan – Funt may be lurking nearby.

    • #26432
      Carol Volckmann
      Participant

      Hi All, I love and admire Cullen’s, Al’s and Jen’s attitude! I don’t care what anyone else thinks we wear our masks and face shields. What really concerns me is how many people especially those at high risk do not realize that the paper masks do not protect the person wearing the mask. The paper masks only protect the other people from getting the virus from you. The face shields protect the wearer from other people who might have the covid-19. We do get out occasionally with very close friends and family outdoors and just a couple or 4. Even then I may still wear my face shield. It’s great they can see me smiling. Taking no chances, I am 76 and plan to be around for a long long time. Hugs to all!

    • #26433
      Sherri
      Participant

      This is such a timely topic. As for me, I always wear an N-95 mask and try to maintain control of situations to avoid coming in close contact with those who choose not to do the same. Unfortunately, my adult children, who are in their early 20s, are not on the same page. They both moved back to our home state of Florida in March and wear a mask only in places where mandated. While I respect their personal choice, it has meant that I have not visited them them since the start of Covid. While I am certain I will eventually be in their company again, I am staying away for now. They understand my position, but it is disappointing to feel like separation is necessary and to not know how long it will be before we are all together again. They are on the front-line of Covid in the Tampa Bay area and fortunately have not lost their jobs due to the virus. Ironically, they do not know anyone personally who has contracted the virus. It is all very baffling.
      On a more personal note, I am currently negotiating with my employer to start the new school year working from home. Too many people, including me, have worked too hard to improve my health since my IPAH diagnosis a year ago. Our district is not requiring face masks for the K-5 students with whom I would be working on a daily basis. Teachers are not required to wear masks in their classrooms and I simply do not feel safe working in a closed-ventilation building with these rules in place. I don’t think me wearing my mask is going to keep me from contracting the virus in this kind of work environment. It is such a precarious situation and I feel like I cannot control my exposure. I feel certain that the district will be unable or unwilling to make the necessary accommodations for me to return to work. In some ways it is a relief, but obviously will create a financial hardship for our household. I am certain these kinds of conversations and situations are occurring in many households.
      I don’t think there is a right or wrong here, just a personal choice. There are just too many unknowns when it comes to Covid. I know for me the way I feel about each encounter with someone outside my household is unpredictable. I try to listen to my inner voice to decide how to proceed. I also try not to judge those who make a different choice when it comes to masks. The federal, state, and local governments and their related agencies are sending mixed messages. It is no wonder people don’t know what to do. I mean does it really make sense that we are allowing close-contact football practice and games at the high school level while simultaneously mandating masks in public places and promoting social distancing?
      Proceed with caution and well wishes to you all!

    • #26446
      Colleen Steele
      Keymaster

      Thank you for your response @alfredjohn. It’s timely because my husband just pointed out to me that I’m getting a little too angry about non-mask wearers. He reminded me that I am doing everything I can to protect myself and family and as sad as it is, I will have no control over anyone else. The only place I venture out to is clinics with my son, and no one gets in without a mask.

      Thank you for your service by the way! May I ask, what helped you achieve a better sense of peace over the years?

    • #26447
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I agree, the paper masks aren’t sufficient, but I guess it’s better than nothing. My family, especially Cullen, wear Vog Masks. If Cullen is around a lot of people, which he hasn’t been since the start of the epidemic, his doctor wants him to wear his P100. To be honest, I hadn’t thought about getting him the face shield. I’ve associated that with medical equipment for the professionals. Do you have a suggestion of where I can order Cullen one?

    • #26448
      Colleen Steele
      Keymaster

      @whitesandsgirl much of what you just shared is what my husband just discussed with me. The mixed messages does force people to make their own decisions about what they will or will not do. Due to decades of caring for my son I tend to have a mama bear approach to things like this.

      I’m sorry that you have to quarantine from your adult children. Mine still live at home. Cullen doesn’t go anywhere but his brother is working and going to school. He always wears his mask and he tries to be as careful as possible because he worries about his brother. However, I wish he could just stay home. He can’t though. He is in an asset program and he would lose all his work and have to start over if he dropped out now. Not to mention losing all the money he has already put into his education. Such a tough call many people have to make.

      I have to say, I can’t believe K-5 isn’t going to be required to wear face masks. I understand how difficult it is to get kids to keep the masks on and not play with them, but the possibilities of not wearing them at all is scary. I’ll keep your negotiating in my prayers. Let us know if you make any progress.

    • #26454
      Alfred Gronroos
      Participant

      Colleen. I have had counseling through the Vet Center since 1989. Individual and group sessions. Had some great therapists who really helped me. And I have used the VA for the pill pushers. Medication does mellow you out. And the biggest change and most important was I quit drinking alcoholic beverages in 1989. I really am thankful for the Vet Centers and the brothers who attend group sessions. You find out you are not alone, just as in this forum. The support from others is unmeasurable. Knowing that you are not alone is an indescribable feeling after thinking/feeling you are alone. We are one. The hard part is opening up and feeling you are vulnerable. The members in the group are what enables one to trust his/her feelings and ideas. Able to share. I attended a weekly group for three years before I joined any meaningful discussion. A long painful time. I finally committed to my therapist I would join the group. So shy and ashamed and unsure.
      Sorry for the life story. You all be safe now. Al in sunny, hot Arizona..

    • #26455
      Robin Webster
      Participant

      I’ve rarely left the house since March 13, and the couple of times I did, I wore a mask, of course. And I refused to go anywhere near those who didn’t wear a mask. I get so disappointed when I see online photos or video of crowded places with people unmasked and not social distancing. At the early part of the pandemic my emotion was “anger” — but I’ve been working on that, since I know that emotion isn’t good for me. It’s more like an overwhelming sense of sadness about the careless behavior now. I realize not everyone sees it that way. Not trying to trigger any kind of debate. Just sharing my own perspective. The most difficult things for me have been not feeling safe to attend a few funerals for loved ones I’ve lost in the past few months. I knew there would be people there who were not mask-compliant and would refuse to social distance, so I simply could not go. At least one of them was live-streamed, thankfully. I also had to miss a family wedding a month ago. It was livestreamed, too, and my husband and I were just aghast. Not a single mask there. And the church was packed, shoulder to shoulder, as if Covid didn’t exist. And the photos they posted from the reception showed everyone just dancing and singing along, right up next to one another on a crowded dance floor. Very hard to look at, knowing that if we had attended in masks believing it would be a small, distanced crowd we would have certainly had to turn around and leave (and no doubt caused great controversy.)

    • #26456
      Carol Volckmann
      Participant

      Hi Colleen, We went on amazon and found the face shields. The masks you wear and the ones Collen wear are very protective against the covid-19. The face shields are also protecting you as well as others and people can see your whole face. Keep well. Keep safe.
      Hugs to you and your family.

    • #26459
      Colleen Steele
      Keymaster

      Thanks @cdvol3gmail-com. Cullen said the same thing, the masks he wears are good protection. He only goes out for medical appointments so all around he is staying as safe as possible. Do you wear a mask with the shield?

    • #26460
      Colleen Steele
      Keymaster

      @robin-webster it’s so hard missing out on celebrations. I’ve had to do the same. My parents live in NJ and I’m in WA state. My dad turns 90 in August and even though I have friends flying about and claiming safety, I just can’t risk it. My parents more than understand and don’t want me to fly out for that reason. It’s hard making those kinds of decisions when you see other people going about their business as if nothing is wrong. Oh well, the best we can do is make the decisions we believe to be the best ones for our own well being.

      Missing the funerals must have been especially hard. I’m sorry for your loss!

    • #26461
      Colleen Steele
      Keymaster

      @alfredjohn thank you for opening up and sharing your challenging journey with us. Congratulations on the progress you have made! I agree that it helps forming connections with people facing the same struggles as you. That’s why I appreciate our PH forums so much. Sharing our life story is part of what we are about here, so never any need to apologize for sharing whatever comes to mind. Every part of our life is affected by PH so everything applies to the forums.

    • #26464
      Carol Volckmann
      Participant

      I do wear a mask and shield when I have to go into a medical facility. My husband wears a shield most of the time now rather than a mask. We keep both with us all the time. Like today we went to look at the lot where we are going to build our new home and all of a sudden a man came up to ask if we were going to be his new neighbor – he was not wearing anything. This was in a wide open field – we had our shields with us! Best always to you and your family. If we ever get over this, I would be honored to meet you now that we move to Port Ludlow!!

    • #26465
      Jen Cueva
      Moderator

      Hi @colleensteele, I am grateful that your friends and loved ones understand the need to take these precautions and wear a mask.

      Funny that you shared that story. I have not been someone yet that I have encountered this issue in public. I have not been out much. But, Manny, my hubby has been out several times and confrony=ted someone for getting in “his space” at Home Depot and another for no mask at a grocery store. Being that if I am out, it is mostly labs, etc. I have yet to have that issue. But, I know if my hubby is around, that he will let them know before me anyway, hehe.

      Have you had to speak up before COVID hit in regards to Cullen wearing his mask? I know that kids can be mean, well adults, too. But I was wondering if he ever had issues at school wearing the mask.

    • #26466
      Jen Cueva
      Moderator

      Hi @alfredjohn, I can only imagine the anger and other trauma that you have struggled with as a Vietnam Vet. Thank you for sharing and being so open with us. I must give you kudos as you mention that you can now control that anger. That must have taken years to come to a better place.

      Being at home and staying away from others is best, I agree. I have been out a few times but mostly for rides.

      I hope that you continue to feel safe here in the forums to share your honest feelings. This is what we are here. I can certainly feel the pain that you have been through as I read your comments. You have made tremendous progress! Amazing!! Thanks again, and please do not apologize or feel ashamed here.

    • #26467
      Jen Cueva
      Moderator

      Hi @cdvol3gmail-com, I agree with you. I keep saying when I am out wearing a mask that the one thing that I do not like is that I cannot see others’ expressions. I like to smile at others, and sadly, under a mask, no one can see that. I always think of this quote, “A smile is the best makeup a girl could wear.” I believe it was Marilyn Monroe.

      I love that you remind yourself and others that you will be around a lot longer. That positive attitude is what helps us all push through. Thank you for your thoughts and for sharing your experience on this matter. As always, hugs from Texas.

    • #26468
      Jen Cueva
      Moderator

      Oh @whitesandsgirl, I am so sorry that you have to keep away from your adult children. My daughter and “son-in-love” are in their 20s also. I am staying away until Mother’s Day when they planned a surprise social distancing picnic for me on the lake. That made my day as I am spoiled by seeing my daughter weekly most of the time. WE would have family dinners weekly or biweekly. This certainly has all impacted my mental health in many ways. But when they continue to go out into the world adventuring and doing things, we all know that I have to do what is best for me.

      AS far as teaching, I hope and pray that you can work from home. Here they are doing online school for at least the first 6-8 weeks. I do think that is best, especially in areas where the virus continues to have high cases daily. I am in Texas. I know this cannot be a comfortable journey for you and can understand your health concerns. Please do keep us all posted.

      I do like that you point out pretty much, “to each their own.” That is what I try to remind my hubby. Take care, and stay safe.

    • #26469
      Jen Cueva
      Moderator

      Hi @robin-webster, great to see you in the forums again. I can certainly understand how you feel about missing celebrations on so many levels. I recently missed my brother-ion-laws 50th birthday at the beach house. It was planned pre-COVID, sadly.

      I am sorry to hear that you had a loss of loved ones since the virus started. It certainly can be difficult if you’re unable to attend funerals and pay respects and also get some closure.

      Anger is undoubtedly an emotion that I, too have dealt with off and on the last several months. Sadly, my hubby gets most of it, as he is the only one that I am around. I, too, have tried to remind myself about better days ahead and look forward to those. I also know everyone has their minds and views. That helps some days.

    • #26500
      Colleen Steele
      Keymaster

      @jenc prior to Covid Cullen didn’t have much issue with comments from people regarding his mask, at least not as much as you would think. To believe it or not, if someone was staring or making rude comments it was often male adults. I don’t know why but it’s true.

      He attended high school for one year than had to switch to on-line classes due to rejection issues he was having. When he physically attended school kids were intrigued by his mask. Many thought it was “cool” and wanted to know where they could get one. Cullen thought that was so funny. He jokingly mentioned even he could get everyone else wearing masks then he wouldn’t have to. LOL!

    • #26501
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I would be honored to meet you too! I hope we can make it happen sometime in the future when hopefully conditions are safer.

    • #26505
      Carol Volckmann
      Participant

      We’ll make it through all of this (one day) and we will be well and safe- see you on that side!

    • #26513
      Jen Cueva
      Moderator

      That is so cool, I love Cullen and his thinking, @colleensteele. I do wish that I was also going to be in that area to meet you and @cdvol3gmail-com, both. My daughter does plan to visit that area within the year or so and maybe I can visit her there. In the meantime, you too will meet up and I want pics!! I cannot wait to see the home and views, @cdvol3gmail-com.

    • #26526
      Colleen Steele
      Keymaster

      @jenc I thought of your husband today and how he has had to confront a few people. Aidan was sitting on a bench in front of the hospital waiting for us. The walkway is lined with bench, after bench, after….and all vacant except the one Aidan was sitting on (and wearing a mask of course). He was on the phone with a tow truck driver because his car broke down and next thing he knows some guy sits down right next to him. Two things not in that strangers favor, Aidan was upset and stressed about his car and very protective of his brother, therefore protective of himself so he doesn’t catch Covid. He said he stopped talking and stared at the guy and finally said, “You have to be kidding me! Look at all those empty benches and you sit right next to me?” The guy shrugged and said, “So,I’m wearing a mask.” Aidan told him to go wear his mask on another bench! He said the guy huffed and walked away.

      I cringed because I hate confrontation but Aidan was so upset and he was right. I looked around at all the vacant benches. Why did that guy choose to sit on the one someone was occupying?

    • #26527
      Carol Volckmann
      Participant

      Bravo Aidan! Why does someone behave like that? Making a statement that says it is all about them! It is so sad, so frustrating, so maddening there are so many in this world who are so clueless. We just have to try and remember there are many who are not!

    • #26541
      Colleen Steele
      Keymaster

      Thanks @cdvol3gmail-com. I’m glad he spoke up but I told him as annoying as it is, next time just get up an move himself. I worry that some people are intentionally looking to stir up controversy and I wouldn’t want him to end up in a dangerous situation with someone. I find it odd that the man sat next to him like that. It’s been bugging me.

    • #26542
      Carol Volckmann
      Participant

      You, of course are right. Best ti just move away and not say anything. You just have to be so careful these days. It is all about keeping safe. Thanks for the reminder.

    • #26546
      Jen Cueva
      Moderator

      WTG, Aidan. I am happy that he spoke up. He sounds like Manny that he will speak up on things like wearing masks and keeping a distance. Like you, @colleensteele, I’m not too fond of confrontation. I try to remind Manny to be the better person and move away. He is working on that, Hehe.

      You make an excellent point; some people are looking to start something. It would make me mad if there were plenty of space, and he decided to sit next to Aidan. Poor Aidan was already having a rough day.

    • #26565
      Mendo Bruce
      Participant

      As someone with end stage emphysema (FEV1 19%) as well as severe PH I am very concerned about Covid but I have a very difficult time wearing a mask. I absolutely can not walk or even move my upper body much while wearing a mask.

      I stay in a lot. When I do walk outside, I keep my mask around my neck (don’t most covid infections start in the throat, lol) and if I see someone approaching, I put my mask up and stand still. When I need to go inside somewhere (like the doctors) I bring a friend to act as an attendant. I have them get me a wheelchair and they wheel me around while I wear my mask. It is still very difficult with the mask on, even sitting still.

    • #26566
      Carol Volckmann
      Participant

      Hi Mendo, I just read your post and am so sorry with all you are dealing with and mask wearing makes it really difficult. Both my husband and myself now wear face shields- they give you more protection from other people who might be positive and don’t even know it. My doctor pointed this out to me so from now on it is face shields. Whenever I have to go into s clinic or hospital I will wear I hope this might work for you too!
      Carol

    • #26570
      Jimi Mcintosh
      Participant

      I have tried over 10 different mask including the M-95, looking for one that I breathe wearing, wear for longer tvv than a hour. I do not need to be confronted by a person that cannot understand that some people are sick and mask complicate the issues. I wear it to protect them, not myself. I go for my 6th test 8/10. It is hot and humid here and people are not maintaining a safe distance, wearing mask, wearing them wrong, wearing surgical
      Gloves and not properly disposing of these used items. When I had eye surgery, I was woke and had to wear a mask and oxygen, really long 2 hours.

    • #26589
      Jen Cueva
      Moderator

      I can certainly attest to struggle with breathing when wearing a mask. I also live on the Texas Gulf Coast, where it stays hot and humid. Last week, for my test, I had to wear a mask for the entire two hours.

      Thankfully, it was in the AC, and only one tech was in the room with me. I also had a face shield provided by him. After he was not in my space and hooking me up. I asked if he cared if I took off my mask partially, at least so I could breathe a bit better. It was a test done while in a recliner, and I had on my oxygen buy still struggled. He was OK with me moving it off and on during the time he was not in my direct space. This helped me get through its procedure, so I can certainly say that I can relate, and while I try my best to wear mine when I am out, most of my appointments ts are medical.

      Friday morning, I go back for labs, and I will be wearing my mask and gear. Thankfully because I have an appointment, this is usually fast.

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