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    • #23931
      Jen Cueva
      Moderator


      A diagnosis of PH and learning to live with this challenging disease is difficult for a patient’s mental health at the best of times. We all know with the chaos the novel coronavirus COVID-19, and the havoc it is causing around the world; these are far from the best of times. As a result, @brittany-foster, @colleensteele, and I, as your forum moderators, have been thinking of our members in our supportive PH forum community.

       

      I recently saw this shared elsewhere on social media and thought it was very powerful- and kind of fun! Your mental health matters and you matter to us.  While Brittany, Colleen, and I are managing our own socially isolated days amidst this health crisis, please review the “mental health check-in” below and respond appropriately (copy and paste just the heart emoji reflecting the color of how you’re feeling). We’ll do our best to connect with members who are in need, as often as we can! You can post a reply below (public) or feel free to message either of us. We’re thinking of you all during this tough time.

       

      MENTAL HEALTH CHECK-IN

      💚 I’m doing great

      💙 I’m okay

      💛 I’m okay-ish

      💜 Things are tough

      🧡 I’m struggling

      ❤️ I’m having a hard time and wouldn’t mind if someone reached out to me

      🖤 I’m in a bad place right now

       

      What are you doing to take care of your mental health right now?

    • #23943
      Stephanie Mitchell
      Participant

      💛 I’m okay-ish

      I’ve recently had to increase my oxygen from 2 to 4 LPM and I’ve started using tanks as my POC is maxed out and can’t really provide enough oxygen for me now. I’m going to get a home fill concentrator which will help. I’m sad that my disease is progressing and requiring more oxygen and losing the mobility my POC gave me. Now I’m having to pull a oxygen tank with me when I go out of the house and always have to have enough spare tanks in the car in case something happens and I’m delayed getting home and hooking back up to my concentrator.

      I’m also coming to terms with the probability of when the COVID 19 outbreak dies down, I’ll be undergoing surgery to have a tracheostomy. I’m finding that I’m needing to use my ventilator more and more during the day, to the point that it makes sense to get the trach. I’m not happy with the idea of having a hole in my neck to breathe through, but I know that it’s the best overall solution to manage my MG. That way I can be on the vent as long as I want and they will fit me for a speaking valve to allow me to talk while on the vent.

    • #23948
      Colleen Steele
      Keymaster

      @stephanie it’s so hard coming to terms with the increasing need for supplemental oxygen. My heart goes out to you with both concern and understanding.

      It sounds like you are torn between dreading the thought of a tracheostomy and anxious for the help and support that it will provide?

      I’m so glad you joined the forums. I hope you are finding that it is a great resource and place to vent and receive emotional support. I am thinking of you.

    • #23949
      Jen Cueva
      Moderator

      I am sending you positive vibes and hugs from Texas @stephanie. This is a lot on your plate at once. I am saddened to hear that you are progressing. I am hopeful that the home-fill concentrator will help some. Pulling those big tanks around is just too much when you are already struggling.

      As far as needing a tracheostomy, this is not what anyone would want. But, try to remind yourself that although this may be a reality, it will help you. It sounds like you are accepting of this because you know this is needed to improve your overall health. This does not mean that this is easy to accept. Remember that you are not alone, and we are here for support. You have been a great addition to our forums. We are happy that you are here and hope that you find the support that you need.

    • #23953
      Stephanie Mitchell
      Participant

      Colleen and Jen, thank you for your kind words of support. One of the things I’m dreading the most is if I’m needing to be on the vent and still need to get out of the house for some reason (Dr. appt, groceries, etc.) I don’t know how I’ll be able to manage taking my oxygen and the vent with me at the same time. I might have to get one of those fancy self propelled wheelchairs so that I can attach my vent and oxygen to allow me some mobility. Of course that comes with the added complications of transporting the wheelchair around, needing a dedicated van and probably someone to go with me when my husband isn’t available.

      Another big stressor will be learning to speak with the trach and speaking valve. I know that a speech pathologist will work with me, but I’ve seen videos of trach patients with the valve, who are experienced in using it, saying it alters the sound of their voice.

    • #23960
      Jen Cueva
      Moderator

      Hey, @stephanie, that does sound like it may take some planning and creativity. I did not even think of that. It looks like you have been thinking ahead. You sound like such a planner. What area did you work in before PH? By reading your posts and questions, you seem like you would be some type of planner.

      I hope that when and if that time comes, we can offer support. I have not had a trach myself, but have taken care of them several times. Learning to talk with it is also something new. Please know that I am thinking of you and sending you hugs and positive vibes.

      Has the increase in oxygen helped any?

    • #23962
      Stephanie Mitchell
      Participant

      Thanks Jen. Before my health issues, I was a pilot in the Air Force Reserves and for a major airline. I’m fortunate the I have both the Air Force and airline disability plans. Also, my husband is an engineer for an aerospace defense contractor. A pilot is always thinking ahead and considering “what if” scenarios in case anything unplanned happens during the flight. So I guess that carries forward in my everyday life.

      My sats with the increased oxygen are holdings ok for now. My doctor is saying that she expects my PH to continue to progress and to expect to be needing progressively more and more oxygen over time.

    • #23966
      Brittany Foster
      Keymaster

      Hi Jen .

      Something really interesting that was brought up at my therapy appointment this past week is the reaction to this unknown that I am having with the covid19 talk. It is very similar to my trauma responses. It has been triggering for my trauma because of that feeling of lack of control. This is something that my body tries to fight against and my mind. I always think of ways that I am able to control a situation, even if it seems out of reach. This time though, it really does seem not in my hands to fix or make better. This is something that I have always struggled with. Do you also struggle with feelings of not being in control during this time?

    • #23967
      Brittany Foster
      Keymaster

      Hi Stephanie @stephanie you show a lot of strength by putting that you are “okay-ish” in these circumstance . It really sounds like your body is fighting through a lot right now. I know that it is so hard to come to terms with yet another medical procedure, recovery, and a shift in what is “normal” after all is said and done. It seems like you have the right attitude and you are focusing in on all of the ways that it can help you to get this, even though it is painful to know that this may be necessary. I know you are doing all you can!

    • #23968
      Brittany Foster
      Keymaster

      @stephanie has your medical team ever mentioned an NIOV machine to you before? It is like a portable vent and looks more like an oxygen machine than a vent with the tubing in the nose, although it is bigger than regular oxygen tubing. I am wondering if something like this may be helpful for you when you have to be more mobile and do things like going to the store etc. Take a look at the machine and what I’m referring to. This was suggested for me almost a year ago but I think if you bring it up to your team it could be a good convo to have!

    • #23971
      Brittany Foster
      Keymaster

      @stephanie I guess that’s one good thing about being accustomed to worst case scenarios, or at least thinking about preparing for them. I know that my own anxiety has kind of prepared me for declining health and worst case outcomes so that the blow doesn’t feel as bad when it comes. If that makes any sense LOL! But sometimes my anxious thoughts can definitely be helpful when I prepare myself in advance of the bad outcome.

    • #23977
      Stephanie Mitchell
      Participant

      Hi Brittany. Thanks for the link to the NIOV machine. It looks like a great option for those patients whose disease can be helped by it. In my case though, the max inspiratory pressure it provides is just 18cm of h2o. That is not enough to meet my needs. I need a minimum of 25cm of h2o.

      I’ve always planned for the worst and hoped for the best. In fact, I’m going to contact my doctor tomorrow and see if she can get me scheduled to do my tracheostomy. I know it’s inevitable that I’ll need it and I’d rather get it now before the peak COVID-19 hits sometime later. The hospital that I go to is one that should have beds available as they are still doing some elective procedures as they are a private hospital and have a higher caliber clientele.

    • #23983
      Brittany Foster
      Keymaster

      Stephanie,

      I’m glad that you are going to make that call to your doctor’s office. It seems like a hard decision but one that you know is going to happen. You have to way the risks and benefits and it seems like you would get more benefit from it which is something that you really need right now. I hope they are able to schedule you with everything going on with the virus and that you dont have to wait too long. Keep us updated please.

    • #23993
      Jen Cueva
      Moderator

      Wow, @stephanie, thanks for your service. That is amazing! I am sure that between yourself and your engineer husband, things are all planned out. My “son-in-love” is an engineer, and he has plans A, B, C, and probably to Z. I love him for that, and he is a special guy. I can certainly understand more about you and how well you adapt and cope with things.

      I am sorry to hear that your doctor thinks that your PH will continue to progress. I am guessing this means fast as your discussion about the trach. You amaze me at how well you are coping despite everything on your plate. I’m sending you big air hugs from Texas.

    • #23994
      Brittany Foster
      Keymaster

      @jenc the strength of our members always amazes and encourages me to keep pushing forward. Thank you for sharing of your difficult decisions but also knowing that is will probably be the best choice for you. I know that is hard to deal with and hard to think about. Doing what’s best and necessary is always challenge if getting there requires extra work! At least that’s how it feels for me in these moments, but the end result is worth it .

    • #23997
      Jen Cueva
      Moderator

      Hey Brittany, I am sure that you are having a difficult time with fear and anxiety. I just shared my recent column about my anxiety related to life’s uncertainties. With your PTSD and trauma, I would think that this would be more of a struggle. I am happy that at least you are doing phone or virtual appointments with your therapist. I am, too, thankfully.

      Lack of being in control, once again, certainly is scary, but I know that we will get through this, too. I am sending you big hugs from Texas.

      Thanks for the tips that you shared with Stephanie. I agree; her strength is incredible!

    • #24009
      Brittany Foster
      Keymaster

      @jenc thanks so much! I am thinking of you too and all your encouragement really means the world to me. I am thankful that we are living in these times where we can easily connect with phone or face time appointments or something if we need to. A lot of my offices have been good about transitions to tele health visits !

    • #24038
      Jen Cueva
      Moderator

      Hi @brittany-foster, Thanks, your ongoing support, and encouragement is appreciated. I agree I don’t know what we would do without the technology that we have today. It is making this quarantine more feasible, for sure. Most of my appointments have transitioned to tell health, too. Now, if only my labs would be over the phone. Hehe

      I usually do labs every 2 weeks at a minimum, I went 2 weeks ago and now trying to wait it out. But, I may have to start back soon, per my doctors.

    • #24050
      Brittany Foster
      Keymaster

      @jenc I could see how this would be challenging, especially when you want to stay as safe as possible but you have to go and get your labs done. I just went to my first in person appointment. It was the first time I have been to an office in about 3 weeks and that is somewhat of a record for me! It was only for a first patient gyno appointment though, nothing too exciting. And that’s one of those appointments that would just be awkward to do via tele health hahahaha!

    • #24087
      Jen Cueva
      Moderator

      @brittany-foster, thanks for a laugh! I just spit my tea out! -Hehe

      I am certainly happy that that gyne appointment was not virtual. I understand how you feel about appointments. I usually have at least 1 every week, so it is a considerable change. I am going to have to go for labs within the next 2 weeks, so I will mask up and go in early and out.

      I hope that the gyne appointment went OK for you. I mean, we all know that it is never fun. I hope that the doctor is a good fit since you said it was a new appointment. Did you like him/her?

    • #24705
      Jen Cueva
      Moderator

      Hey y’all, I know times are difficult, and many are having increased anxiety and depression. Social distancing is causing an increase in loneliness. Please remember that your other forum moderators and I are here.

      I wanted to check-in because I’ve noticed, many of our members have been MIA. Please let us know how you’re doing. We are thinking of everyone and your safety.


      @jimi
      , @carol-alexander, @becca, @texas2018, @margie-novak, @robin-webster, @christopher-cassata-bobby-shows,@stephanie @vanessavaile, @ksmith610, to name a few.

    • #24710
      Vanessa Vaile
      Participant

      More later, on my way to Zoom meeting of YuCo & Friends Indivisible Group steering committee meeting. I’m keeping busy, informed and sharing (alt nom de post is Guerrilla Informationist). Today is a 3 Zoom day: above meeting, weekly Future Trends in Education Forum and an evening live poetry reading and open mic from NM (where I was an active poetry blogger before moving to NM — still maintain a poetry Facebook page). Since today is Earth Day, I intend to post about that across poetry, education, advocacy and community networks as well as getting in another mile plus walk. Recently I volunteered to text bank for National Nurses United’s COVID-19 RN support project.

      In other words, not to worry. btw I do get and read email updates on posts, and will try to check in more often.

    • #24718
      Jen Cueva
      Moderator

      Wow @vanessavaile! You amaze me in all that you’re involved in. I’m happy to hear that you are well and just keeping busy. That us helpful, plus you’re such an inspiring advocate in many areas.

      Keep up the incredible job and take care of yourself. I’m sending you hugs and sunshine from Texas.

    • #24731
      Colleen Steele
      Keymaster

      @vanessavaile it’s always good to hear from you. I love how busy you keep yourself and the amazing job you do keeping people informed about important topics. Thank you for continuing to follow the forums and checking-in when you can. Stay well!

    • #24743
      Carol Volckmann
      Participant

      Hi Stephanie, I read your post “I’m ok ish”. You have so much on your plate and you are dealing/coping/researching/weighing your options – moving ahead. Sounds like you and your husband are truly great partners in your struggle. Also remember, sometimes it is okay to let go and allow yourself to feel not okay that goes for your husband too. You both are fighters and you both will deal whatever is ahead. Sharing the not so good moments for myself helps to move ahead. I think you are awsome and send you all the positive energy I can along with Jen’s air hugs,
      Carol

    • #24747
      Jen Cueva
      Moderator

      Hi @ksmith610, I can respect your silence as a sign of respect. You offer some thought-provoking topics to the forums. We appreciate your feedback, too. But, also know that any support that you need, we are here. Your concerns are just as important.

      I don’t have as much life experience that you have, but we can agree that our world is in a dystopia. It is heartbreaking in so many ways.

      It sounds like you are keeping busy and enjoying music. I wrote about music therapy last week.

      I did not know that you were once an orchestra conductor. That sounds exciting. How many years did you do that? I hate to tell you that I have yet to attend an opera. I have seen Bocelli, and I know him being called Opera has been a debate. What are your thoughts on that?

      I am with you on eating too many snacks. I find that the last month or so, I have been doing this more often. It is OK to enjoy your snacks and beer every so often.

      I hope that your transition from selexipag to Orenitram goes smoothly. I did the opposite. For me, the worst side effects were the GI ones. As you know, all too well, our bodies react differently. Please do keep us posted when you transition.
      Stay safe and take care.

    • #24748
      Jen Cueva
      Moderator

      Hi @cdvol3gmail-com, how are you this week? I love the kind-hearted support that you offered, Stephanie. I am sure that she will appreciate that as well.

      I agree with you, it is OK to let go, and we need that sometimes. As you mention, it sounds like Stephanie has some fantastic support at home. I am sure that helps with all that is on her plate. I should say their plates. I know that for my hubby, often, my struggles are more difficult for him. Does anyone else feel this way? I am beyond grateful for my loving support at home. I don’t know where I would be without that.


      @stephanie
      , how are you coping this week?

      I am sending you both air hugs and sunshine from Texas.

    • #24753
      Carol Volckmann
      Participant

      Hi Jen, Like your husband mine gives me so much. I do believe it is more difficult for the care giver than the patient – a spouse, mother, father, child or friend. They want to fix it. It is so hard to stand by and see your love one in pain and suffering and you really cannot fix it. But, they are there for us supporting, helping with our meds, making us more comfortable … loving us. Thank you for your support and air hugs!

      • #24766
        Jen Cueva
        Moderator

        Hi @cdvol3gmail-com, I agree with you. Being a caregiver and watching your loved one suffer from something totally out of your control is tolling on them. I am forever grateful for my hubby, too- air hugs from Texas.

    • #24755
      Rebecca Talkie
      Participant

      HI everyone – I’m struggling. I have had situational depression in the past. I have often joked with my Primary MD that I used up all my serotonin when my Mother died my Sr. year of high school. The last time I said that, he looked at my drug profile and said – you know, you are on the wrong drug for that. So months before all this COVID stuff, my med got switched to a serotonin reuptake inhibitor. It was a smooth switch and I was doing well. Then this. I am quarantined with my husband who is an engineer and not real big on how to help me other than to suggest ways to ‘FIX” it that don’t make sense for one thing. I am separated from all three of my adult children and their husbands, one with MS, and my four grandchildren. They are literally growing up before my eyes on Face Time and its killing me. I have pretty much hit a big time depression. All our trips have been cancelled. I cry a lot, I sleep a lot, except for nighttime. I was in pain from a back issue but thank heavens just got an injection because I fit the criteria for getting it done. I have friends who are praying for me but since we can’t get out, I can’t see them or do any of the things that used to dig me out of temporary funks before. Combine this with what seems to be some ADD as in I can’t concentrate on anything that I might do like read or sew or do genealogy. Nothing seems like fun, nothing tastes good except sugar, and I am tired of cooking. I am well aware that others are struggling and I pray for their requests. I got a call from an EP Dr office that said I had a referral there but apparently it was old before my 30 day heart monitor showed nothing. ( Yeah, half of it was on quarantine.) So that was a mess. Sorry so long and so downer.

    • #24767
      Jen Cueva
      Moderator

      Hi @becca, I am so sorry to hear that you are dealing with depression. I am sure that switching your medication before all of this was not the best time. But who could have ever guessed this?

      My heart breaks as I read how much you miss your kids and grandbabies. I have my daughter and “son-in-love.” They live only 20 minutes away, and I am unable to see them except for a short drive by last week. I can only imagine how difficult this is for you. I realize this is breaking your heart, not being with your grandbabies. FaceTime has been great, but it does not replace the human touch and connection that we feel with that.

      For me, seeing and touching my daughter’s face and hugging her tight is how I know that she is OK. I can empathize with you. I try to think of all of the things that we will do when we can again hug them and spend time with them. Have you tried doing that to see if that helps?

      I also cry a lot, it helps get it out but does not dull the pain. I also talk with my therapist virtually every few weeks. Do you see a therapist, too? I know that most are making telephone and telehealth video appointments. I think with your history of depression that your medical team has these appointments in place.

      I wish that I could reach out and hug you. I just read your comment on my column before I saw this. Thanks for reading, and please pop in and let us know how you are doing. It is such a difficult time right now.

    • #24768
      Jen Cueva
      Moderator

      @ksmith610, you are not lying when you say Opera is not one of the affordable ways to enjoy music. I know the tickets are pricey. I am happy to hear that you say that I am not missing out.

      Your history is quite impressive! I think that is so cool that you were born at the same hospital that you are now being treated for PH at. It sounds like you are still in the process of moving. Or do you have both homes?

      I do remember we talked about flying before. But, I had forgotten that as my memory is not what it once was-Hehe. My hubby also enjoys flying, but he has only gone once. He does fly remote control jets and helicopters as a hobby. He also has a flight simulator. I think that is it so exciting that you can still go and enjoy it when you feel up to it with a trained pilot as far as your protection. Take care and happy flying when you get the chance to go again. I would love that.

    • #24784
      Colleen Steele
      Keymaster

      @becca you are not a downer. Expressing your feelings, the good and the bad, are what these forums are for. You are not alone with your emotional struggles. I mention that only to emphasize that you are not alone and that what you are experiencing is understandable and not abnormal.

      These are tough and crazy times the world is experiencing right now and for those also dealing with serious health conditions, it’s double the concern and feeling of loneliness.

      I’ve actually been having a rough week too. Late last night I sat on my porch for a while. I turned my mind off by closing my eyes and listening to the sounds of the bugs and the trees moving in the wind. It really did calm me, that and a hot bath helped me sleep. Today I’ve been listening to up-beat music and this evening I’m going to find something funny to watch.

      I know you would rather be with your family and I hope that in the near future you will be able to. In the meantime, try to find little ways to distract yourself and trick your mind into feeling at peace, even if it’s just for as long as it takes to watch a movie.

      Stay in touch and let us know how you are doing.

    • #24786
      Colleen Steele
      Keymaster

      @ksmith610 when you mentioned how you don’t pray but occasionally use your siddur as a meditation help, it reminded me of something a friend once told me. “You don’t have to be religious to be spiritual.”

      I would like to address your comment, “I tend to be quiet here because I am empathetic to the suffering of others and in my case I have little reason to feel my suffering is any worse than anyone else’s.” There was a time when I thought that way too. At first my son responded well to treatments and for a long time he seemed to be doing so much better than most. It felt awkward discussing his minor issues in forums where people were opening up about big struggles. What someone pointed out to me is that we all have a place in this battle and that all of our voices need to be heard.

      We enjoy hearing from you, especially since you often offer a unique perspective on things and have had an interesting life. I would hope that we aren’t rating each other by suffering. No matter what stage of this disease a person is in, I believe we all have something to share that can benefit someone else. Most of all, I hope it just feels good to talk to each other.

      Have a good weekend, Kevin and let us know how you make out with the Orenitram.

    • #24967
      Randolph Reynolds
      Participant

      Greetings and blessing to all who are on this particular forum. I was especially touched by Stephanie’s situation. The things that have happened to all of us would overwhelm many who just find this pandemic annoying. The quarantine has also severely limited my social life and what little I had before was not enough. When I was required to go on O2 full time it was a blow in many ways. Yet when Stephanie wrote about being a pilot both AF and Commercial it struck a cord. Flying was my life both in the AF and with NASA. At least my PAH didn’t show up until I was retired. I wish I had the proper words to say that I am awed at the courage everyone has in trials like this with the Covid 19 scare making things worse for our mobility. How this band of fellows we are part of face each day is in itself a small promise of another life that is full of joy.

      For me the coronavirus has become most threatening, as my wife constantly reminds me. Yet I want to bust out. “To slip the survey bonds of earth and dance the skies on laughter slivered wings.” Each day is a battle against depression. We were not given a spirit of fear but yet we deal with it. I feel that I am not alone when I can share my deepest feelings. This is a good place to say that we know what lies awaiting us but we carry on.

    • #24970
      Colleen Steele
      Keymaster

      @stephanie, @ksmith610, @ripple76 I love that the 3 of you have flying in common. It’s a skill and experience that not many share so it’s amazing to see that bond here. It’s an example of why it is so worth speaking up in the forums.

    • #24974
      Colleen Steele
      Keymaster

      @ripple76 your post today is so poetic. I found your words deeply moving. I wish I could find the right ones to relieve you of the sadness you are feeling during these trying times. You have mentioned your sweet wife in the past and how much she worries about you. May you both be a comfort to each other and hopefully see a return to some normalcy in the near future. I know we are all in need of that.

    • #24977
      Jen Cueva
      Moderator

      Hi @ripple76, I’m happy that you felt up to posting. I find that an exciting yet cool coincidence that you, @stephanie, and @ksmith610 enjoy flying. It’s certainly a small world, isn’t it?

      I wish that I could send you big hugs and let you know that you’re not alone. I hope that better days are in your future. These unpredictable times are not easy; living with PH and other health issues only complicates this.

      I know that Stephanie will appreciate your kind words. It’s incredible to watch the support that is offered within our PH forums. Thank you for sharing. I’ll be thinking of you and your wife.

    • #25013
      Carol Volckmann
      Participant

      I went on line again to re-read these posts. Kevin, Randy and Stephanie your words, feelings touch me deeply. I am not a religious person- but more spiritual person. When I re-read your posts brings to mind the poem FAITH. “Faith is knowing when you come to the edge of the darkness and fear of the unknown and you are about to step off, you will be taught how to FLY!”
      Love to you all.

    • #25016
      Colleen Steele
      Keymaster

      @cdvol3gmail-com that is a beautiful quote! That and the words from @ksmith610, @ripple76 and @stephanie leaves us all something to think about over the weekend. Thank you PHriends for being so open and ready to share your thoughts with us.

    • #25031
      Jen Cueva
      Moderator

      I love that @cdvol3gmail-com, thanks for sharing that with us. I agree with that 100%. I admire the vulnerability and compassion that each of you has shown. This is what the forums were created for.

      Thinking of each of you this Friday afternoon and wishing you all the best over the weekend.

    • #26427
      Randolph Reynolds
      Participant

      I am not sure where I should put this. How is the impact of the restrictions due to Covid 19 further isolating us from society? I have experienced a sense of losing touch with some good friends even though we can communicate on line; it is not the same as face to face. In other words depressing. But I have lived with various emotional reactions to my PAH before just that now it seems more difficult.

      My temporary solution is to have meals at open restaurants with my wife and with other friends. Almost always with just two or three at a time. It helps my mood tremendously. My oxygen tank accompanies me.

      I can only see my doctor with on line meetings. At least we can connect but the virus has caused our hospital to require Covid 19 tests followed by quarantine before I can get the echocardiogram that I normally get. I sense that my condition has worsened but also my motivation is low.

      At my age and with my background I want to be part of the recapture of our Republic and I think I can contribute despite my handicap. At least I am voicing my opinions and they are strong. The well written word can influence those who want to read it. Keep up the battle.

    • #26430
      Colleen Steele
      Keymaster

      HI @ripple76, posting here was perfect. It’s good to hear from you. I feel your struggle about losing touch with good friends. I have been feeling the same way lately. Your temporary solution sounds nice. I’ve been debating about doing the same. A friend recently invited me to have dinner with her and her husband outside of a restaurant. If you don’t mind my asking, do you feel protected enough when you socialize in that way? I think if you keep a nice distance, meet with just one or two people, wear a mask (well, except when eating) and meet outdoors, it lessens the risk. I really miss my friends but I’m still in fear of venturing out too much.

      Is your doctor aware that you are suspicious that your condition has worsened? The Covid test is miserable but maybe you should consider going in and having the echo. I’m concerned about you. Please keep us updated.

      Keep voicing your opinions and writing! I think it’s wonderful and important that you speak out about what concerns you.

    • #26827
      Valerie
      Participant

      Hello, everyone! I’m sorry that I don’t write here so often, but I always look here and thanks to the forum I keep afloat. Thank you for being there, guys! I am happy for people like Randolph, who have the opportunity to communicate with friends in an open cafe. Do any of you still distance yourself from people? I am. I don’t go to stores or other public places.  I can’t breathe in a mask! I haven’t seen my friends in months! I can’t meet my friends even on the street, because they don’t protect themselves from the virus in any way and won’t keep a social distance from me. Now they are offended with me. They say that I call them contagious and just stupidly shout “Oh, Oh, the germs!”. I was very upset. Almost all healthy people (or more or less healthy) do not even try to understand us! This is very upsetting for me. I used to get angry at people who smoke next to other people and don’t care about their own lungs and other people’s lungs. But now there are so many who say “virus is nonsense” or simply do not think about the fact that someone nearby can suffer greatly because of this. Does something similar happen to you? I hope that people around you understand you better.

    • #26840
      Colleen Steele
      Keymaster

      First of all @valeriekvit is always nice to hear from you but never feel guilty about not posting. We are here for you whenever you need us and there is never any pressure about responding. Except for errands and clinic/hospital visits, I have remained at home too. Honestly I didn’t think it would bother me but the lack of a social life is starting to get to me a bit.

      I think it’s horrible that people have made snarky comments to you. I’m so sorry that is happening. I haven’t experienced that but I do see on social media that my friends have been getting together in very small groups, usually outside, but I have not been invited. I know it’s not that they are ignoring me or think I’m overreacting to concerns, it’s because they know how unsafe it would be for me to join them. Still, it’s hard to see others having fun…so I feel your emotional pain.

      Have you found ways to keep yourself busy at home? What sort of things do you enjoy to pass time?

    • #26852
      Valerie
      Participant

      Colleen,
      it’s great that your friends understand that you won’t be able to meet them (it’s better than if they invited you and were offended by your rejection). With such friends, you can probably communicate at least by video link and they will not blame you for this. You have so many difficulties and problems that communication with friends (even virtual) probably helps to distract. You also continue to adhere to self-imposed isolation? I do it too. I go exclusively to work, but there I try to keep a great distance from people. On my desktop there is a large yellow sign “social distance of 1.5 meters”.
      I like to be at home, so it is not difficult to find something to do. I’ve also been reading a lot of biochemistry books lately, because I prefer to understand what’s going on in my body. This information is cooler than any detective.
      But, of course, self-isolation makes me feel even more distant from people. I strongly miss normal communication (without paranoia, moving away from the distance and such things), a simple trip to the store.
      I would like to hope for the best, but I think this virus will be around for a long time. We and other people who are afraid of this, and will not have to see anyone? Maybe there are some tricks to see other people, protect yourself and not offend them with some means of protection?

    • #26857
      Randolph Reynolds
      Participant

      Valerie
      We all are more affected by this Covid curse than the average person. My need to get out and socialize is restricted not only because of my dependence on oxygen and my physical limitations but those who are closest friends have for the most part quit gathering. Before this virus I could look forward to spending more time with old acquaintances. I occupy some of my time at home with on line courses. Some of them are about our Constitution and the changes that our government has been undergoing over the years. Needless to say the protests, the way the politicians seek power, and the insanity that is beginning to arise causes me to feel worse. How we react to the pandemic is a statement to our resiliency. Mine is not so good.
      My heart goes out to you for what you have endured for so long. You are being tossed about in a world that doesn’t understand. You sound as if you are coping. Although we are only connected by the internet I sense of camaraderie with this group. May we all endure with our character intact and our hopes restored.

    • #26858
      Valerie
      Participant

      Randolph,
      I’m also very sorry that you have to be isolated and not see your friends (this huge happiness, that there is this forum!). You are engaged in a useful business (although a passion for politics only spoils the mood, rather than improves). I sometimes waste time when I just read stupid jokes to lighten the mood.
      You are right, the world does not understand us. In addition, our stability has already been severely shaken due to all sorts of diseases, so although we are used to distancing ourselves, we are more acutely aware of how something is taking away our remaining freedom. I wish you to find a way to communicate with people more often in reality. I still can’t find that way.

    • #26859
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26860
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26861
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26862
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26863
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26864
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26865
      Colleen Steele
      Keymaster

      @valeriekv I’m like you. I can find plenty to do at home that makes me happy, including reading. That’s why I didn’t think lack of socialization would bother me. My friends to call and check-in on me. I do have a friend who has been inviting me to a cider bar where they sit outside and order from a vendor. I’ve thought about going but my son really doesn’t want me to.

      I too am afraid this is going to be life for much longer than we at first thought. Like you and @ripple76 mentioned, at least we have each other here. You are all the best and I enjoy the conversations. It’s always a nice combination of medical and social/friendly. Stay strong my PHriends!

    • #26870
      Jen Cueva
      Moderator

      Hi @valeriekv, I am happy that you are benefiting from some of the posts here. I am sorry that your friends are so rude. I do have family that goes and does whatever like nothing and gets mad at me when I say don’t come by or leave it at the door. It does not make it right. I think that they still do not want to or try to understand my disease.

      It has not been easy. I thought that I stayed home pre-COVID, but this often is a struggle. I only go out to the labs, etc. I have been going nuts inside for months. Drives take me away; we usually do this on a day when my hubby is home. We are supposed to go to a place for my daughter’s birthday next week; I am still not 100% sure yet. We must protect ourselves and do what is right for us. Others can become frustrated; no need to be cruel or insensitive.

      You are not alone, and we are always here to help one another through such challenging times. We thought that PH life was difficult; this is not helping. Hang in there and know you can come to talk to us anytime.

      Together, we will all get through this—one day at a time.

    • #26871
      Jen Cueva
      Moderator

      @ripple76, it’s great to “see” you on here. I know that we all try to keep busy and do the best that we can. We do all have one another, and for that, I am grateful. This is such a close-knit, caring group. My heart goes out to you all. Stay safe and keep PHighting.

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