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Coping psychologically with lung disease

How do you guys dump lung disease into a box and keep it from taking over? How do you guys cope with the mental stress of chronic illness? 

I think I’ve gone through denial, anger, acceptance, frustration then repeated the cycle like many times. 

I’m pretty sure I know what this is. I’ve had twitchy lungs since I was little. I always got chest colds after every cold as a kid. I remember my parents talking with the doctors about putting me in the hospital as a kid for bad bronchitis but I was too afraid to sleep in a strange bed. I always dreaded spring running in the school field because my nose would pour out mucus afterwards then the coughing fits would start, I remember growing up with the eczema patches on in the folds of my arms and around my knees. I remember having getting good at picking out the strength of the steroid creams depending on where the rash was on my body. I remember the first time I experienced cold induced asthma, when I stopped running, was gasping and made a high pitched whistle that even I was surprised could come from a human body. I remember my first skin test and watching large welts grow from little pin pricks to giant circles then they morphed into spiders. I remember being offered immunotherapy 9 years ago and chickening out. 

I’m 99.99% sure this latest insane breathing trouble is my old friend asthma and atopy. But the mind does funny games … maybe the doctors can’t control my symptoms because it’s reflux, or vocal cord dysfunction, or a problem with floppy airways or ABPA. All I know right now is steroids suck (this right now is all that’s really working) and it stinks that I’m still in limbo and scared and tired of being sick. It’s exhausting. 

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  • Deborah Bartlett

    I was first diagnosed with COPD. About a year later, diagnosed with asthma. A little over a year ago….severe persistent asthma. OK. This is what life has dealt me. I will deal with it and manage the best I can! 

    When I first found out how a person dies from COPD, I was mortified. It is horrible. Slowly, I taught myself to live my life to the fullest. Yes, I have had to change my lifestyle by 80 percent. But I am here! WooeyHoo! 😵 Yes. It was very scary. Yes. I almost died last year. But I didn't die! WooeyHooHoo! 😲 Now I help others. I advocate lung disease. I am a state captain for the COPD Foundation. I learn to ignore idiocy. I choose to look at the bright side of things. 

    The worst thing any of us can do is to panic and have anxiety. That will make our breathing worse. At least we are all here for each other. As the American Lung Association says….Together We're Better. At least we all know that WE, as a group, understand all of this. Yes. We can gripe and complain. Yes. We can share our simple little pleasures. Share pictures. Share accomplishments. It's wonderful. 

    I always say…I am here for you. That goes for all of you. If anyone needs me! 

    Stay on your medication program. Eat well. Remain positive!!! Live life!!!!

    😀❤💞

  • Emelina

    I can’t say enough about your optimism and outlook on life Deborah. It is amazing. I watched my grandmother die from copd and it was terrible, my dad also has copd and I worry everyday about him. But what is he doing? He’s on vacation oversees celebrating his father in law’s birthday. You are right, we get dealt cards, we figure out how to play them and move on. That is incredible that you are embracing living life to the fullest, changed your life style and are using your talent to be a champion for others with copd. You are very right, it is a choice to look on the bright side or wallow in the dark and curse the cards that land in front of you. We are stronger together. Again, so glad I found this group. Hero cape and asthma mask wearing, life and sanity savers. Thank you Debbie for your thoughts and for all that you do.

  • Deborah Bartlett

    Thank you from the bottom of my heart for your kind words, Em. I'm so glad that you've joined this group. You're a good friend! Thanks for all your insight and valuable information. Let's hear it for Em!! 🎆🎆🎆🎐🎉🎊🎈🎈🎈🎺😀😁

  • LK

    Em,  Well, to put it bluntly, we cope well at times and not so well at other times!    

    Before I found these forums I was at my wits end trying to figure out how I could have such severe asthma and no one else seemed to have it.  Lots and lots of prayers and tears.  It is scary, exhausting and sometimes you just want it to be fixed.  

    We are here for you!!       So glad you are here!  

    Our minds on steroids definitely do funny things.  They start worrying about all the "What ifs" but please try not to let it go there.  

    You will make it through this!!  

    Keep up with your meds, talk with your doctors whenever you feel like something isn't going right or have a question, rest, fluids, and chat with us as often as you care to!  

    I had to stop teaching therapeutic riding, riding horses, and doing anything around horses.  I have been around horses since I was in grade school and I can tell you that was a very hard decision.  Took me all of last winter to come to terms with it.  But the Good Lord is in control even when we have no idea what the future holds for us.  That is a comfort even when we wake in the middle of the night and can't breathe.  

    Hope you are able to get some rest today!!

  • LK
    Emelina posted:

    How do you guys dump lung disease into a box and keep it from taking over? How do you guys cope with the mental stress of chronic illness? 

    I think I’ve gone through denial, anger, acceptance, frustration then repeated the cycle like many times. 

     

    Em,  Sometimes it does take over.  For me, I have to remember that when it does take over it is only for a brief time even thought when I am in those times it seems life forever.  As far as the stress, well, I visit these forums frequently!     Vent if I have to and try to give support to others when they are struggling as I have so often.  I have found a dear friend who also has severe asthma and that has helped me immensely.  It took a bit of courage on both our parts to reach out to each other and take a chance on a new friend who may or may not want to put forth the energy of a new friendship.  Having someone who is in the same boat eases the burden of this disease.  An understanding ear or a shoulder to lean on or cry on makes all the difference.  Just as these forums are a wonderful support to all of us.

    I think all of us have gone through the denial, anger, acceptance, frustration cycle so many times.  That will wear a body out, too.  For me, it is important to remember, as Cynthia says so well, this is for NOW and not FOREVER.  We will always have to deal with asthma and all of our other medical conditions BUT there is always HOPE!

    Please know that you will get through this!  

  • Shea

    I think of my asthma and allergies as guides… As part of me… And not necessarily as enemies.

    Like a wounded leg– you dont yell at your leg for being hurt and curse it for having to wear crutches, you dont deny it, and you dont keep replaying over and over what happened to get it. But you remember what happened and dont make that mistake again. You wear your crutches. If others ask you to run, you laugh at them. You think of them as kids and explain, oh I broke my leg, I have to walk on crutches. As it heals. I have to take pain medicine for a while and treat it gingerly. I have to do rehab exercises with it. If I rush, I will reinjure it. 

    It just is harder with asthma because people don't understand or see the injury. Neuther do we at first– we feel it. But we have little guidance. It is not a well understood disease.. I think it is a chronic disease BECAUSE of that. I think there is a better end than anyone has imagined for us. And even if others do not show sympathy, empathy, or respect… Even if they dont know how to help you heal and try and push you.. You dont listen to them! You listen to your pains and your breath, and you breathe into them. You find your crutches and you get better at walking with them. You gingerly take snall steps here and there and pay attention and feel them. You strengthen your muscles, your lungs. You protect the wound from germs. You change its dressings. You keep it very clean. And you try and have patience with the "kids" all around us. Dont bump me. No I cant go faster. And you accept yourself and your healing process and they will too. That is how I see it. 

  • LK
    Shea posted:

    I think of my asthma and allergies as guides… As part of me… And not necessarily as enemies.

    Like a wounded leg– you dont yell at your leg for being hurt and curse it for having to wear crutches, you dont deny it, and you dont keep replaying over and over what happened to get it. But you remember what happened and dont make that mistake again. You wear your crutches. If others ask you to run, you laugh at them. You think of them as kids and explain, oh I broke my leg, I have to walk on crutches. As it heals. I have to take pain medicine for a while and treat it gingerly. I have to do rehab exercises with it. If I rush, I will reinjure it. 

    It just is harder with asthma because people don't understand or see the injury. Neuther do we at first– we feel it. But we have little guidance. It is not a well understood disease.. I think it is a chronic disease BECAUSE of that. I think there is a better end than anyone has imagined for us. And even if others do not show sympathy, empathy, or respect… Even if they dont know how to help you heal and try and push you.. You dont listen to them! You listen to your pains and your breath, and you breathe into them. You find your crutches and you get better at walking with them. You gingerly take snall steps here and there and pay attention and feel them. You strengthen your muscles, your lungs. You protect the wound from germs. You change its dressings. You keep it very clean. And you try and have patience with the "kids" all around us. Dont bump me. No I cant go faster. And you accept yourself and your healing process and they will too. That is how I see it. 

    Shea,  Wish I had your way with words!!  You say things so well!  You make it make sense and shows a wonderful way to think of it and to deal with it.  You are amazing!!  Thank you!!

  • K8sMom2002

    Oh, my goodness, such wisdom from so many folks!

    Lisa, support does matter and can make such a difference, and I love how this community rallies around folks and helps us all feel less alone and isolated. 

    Shea, I love how you use your body as a guide, and how you can help us visualize our body parts in a way that they are not enemies, but signalers. 

    Emelina, hugs … Lisa is so right. How do I handle asthma? Sometimes with grace and poise and wisdom. Other times? Oh, my. And I think we can safely say that's the case for all of us.

    Grief is a funny thing, and we ARE all grieving over a loss — the loss of the ability to take our bodies and our lives for granted. For me at least, grief is not a checklist that I tick off boxes and say, "Okay, done with denial, now a quick trip through anger ,and I'll be onto bargaining."

    There are days when I find myself squarely back in denial. There are days when my mind will be locked into anger or bargaining. And then I have those heady, enlightened days when I am calm and all is at peace, and I accept my current situation.

    Over time, the days I spend mired in denial and anger are fewer for sure. But there are days, and then there are days

    Could you give yourself permission to embrace those feelings? Is there anything wrong with reaching out to your doctor and saying, "Okay, we've been over this, but just to be sure, my peace of mind really requires us to go over this — could it be x, y, or z instead?" 

    Know you are not alone. Know we love you and are here for you even through the worst of pred-somnia. You can't say or do or think or feel anything bad enough for us NOT to understand. Know we fully and completely understand what you are going through. 

    You. Are. Not. Alone.

  • Emelina

    Deborah, thank you so much for your kind words. I see angel wings under the hero cape. It takes someone with an enormous heart to give and guide others. 

    Lisa, I definitely hear you about coping well some days and amazingly bad on others. Steroids do weird warpy things to the mind and emotions. I broke down bawling in my car when I was talking to my doctors nurse when I was asking if the orders for the methylpred were in so I could go into infusion and get it. The stress of just wanting to feel better and having so many barriers pop up all cane flooding out. Gosh, I can’t imagine giving up a life’s passion for therapeutic riding. But I totally agree the good lord is in control and he’s got a plan. My favorite poem is the footprints poem. I think everyone we meet, every challenge, every triumph. It happens for a reason. There’s something to be learned/gained from every interaction. He’s trying to teach me something and guide me to the next step. I cried a lot over resigning this job, but in my prayers I feel he’s telling me it’s ok. I’ve helped the people I was meant to heal here and he needs me somewhere else. I’ll post a picture for you below. You and cynthia are right, it’s now, not forever. There is always hope. I have that engraved on the underside of my wedding ring. 

    Shea, I agree with Lisa, you have a gift with words and perspective. I love the analogy to an injured leg. It’s not the enemy, it’s part of me. I think I’ve been screaming at the leg, hoping it would fall off or just disappear. I like too how you explained how you care for the injury around others and the “kids” that just don’t get it or care to. No don’t dump me, no I’m not going to run on it. Beautiful. That helps change how I look at these last few months. Yes, you could neglect the leg so much it needs to be amputated but then that would leave you less whole. Thank you. You have a gift with words. I think you hit the nail on the head, it’s also a challenge to come to peace with the injured leg, but also how you perceive and see yourself. I looked in the mirror and could see the changes from steroids and all of the fights with work and doctors and forgot this is just one stage of recovery, not my forever. The wound heals, the skin regrows, the braces and crutches can be weaned, and eventually maybe you’ll walk with a scar and a limp, but there’s always hope. 

    Thank you all so much for your kind words and giving me a safe space to cry and scream. Yesterday was miserable. I had to lay down several times. It took me 6 hours to eat lunch, was too nauseated to eat dinner. I was scared because nebs weren’t working, then I was left with no back up and people who still needed to be cared for. I seriously considered finding an adult diaper I was coughing so hard while trying to dictate my notes and keep up with people coming in. Then the diarrhea started from upset tummy from antibiotics and stress. I was the textbook definition of one hot mess. But, it was still a good day. Everyone was cared for. I got to participate in some very challenging but rewarding family discussions and comfort those in need. I finally left work at 2:30 am but crawled into bed feeling satisfied that I did my best and made a difference for those that I cared for. 

    As a lighter aside, sometimes you gotta find humor in this. I guess that’s the other coping mechanism I like. I have so many bad jokes I make people groan, but i think it helps build the therapeutic relationship. As I was taking my medications this morning, I just had to laugh. Between the methylprednisone in my butt, fluticasone in my nose, trelegy in my lungs, and singulair and azithronycin in my blood and strong cough medicine up in my brain, something just has to work. But more importantly, with a group of inspiring, strong, funny and resilient people like you in my heart, I have hope that this is just a speed bump. You give me something no drug ever could. Thank you so much. As bad as yesterday was, you guys were there too. Between computer work I’d eyeball the forums thinking if they can do this, I can too. 

    This picture is my version of the foot prints poem but in a slightly colder mountain plains setting. Thank you for making me feel less alone and scared.

  • K8sMom2002
    Emelina posted:

    But more importantly, with a group of inspiring, strong, funny and resilient people like you in my heart, I have hope that this is just a speed bump. You give me something no drug ever could. Thank you so much. As bad as yesterday was, you guys were there too. Between computer work I’d eyeball the forums thinking if they can do this, I can too. 

    This picture is my version of the foot prints poem but in a slightly colder mountain plains setting. Thank you for making me feel less alone and scared.

    Awwww … I this! Now who is the one with the way with words? Thank you for sharing and being such a fabulous member of this community! 

    Love the photo — it brings me such peace when I look at it. 

  • Emelina

    Maybe this is a little cheesy but I’ve never been an orchid person. They always withered and died. This year I got my first orchid ever to bloom, and it has been blooming for the last 2 months. But to get it to bloom, I had to up my game … read about orchids, replant in appropriate media, make sure the roots didn’t rot and watered it only once a week. Maybe I should think of this asthma flare as similar to learning how to successful care for and make a picky flower bloom. Read, research, ask others, and conquer the challenge and pretty soon the care and watering becomes effortless.

    It makes me smile, and reminds me there is always hope (blooms) in adversity (hard cold, bitter winter). The seasons will eventually change, like you said, this is now, not forever. But it also reminds me how life is fragile and precious and it must be enjoyed and embraced. Here’s hoping the blooms stay around for a couple weeks or months more.

  • LK

    Wow.  Just wow.  Cynthia and Em you both have said it so well!!  Really puts it in perspective.  Thank you!!  

    Em,  Way to go getting the orchid to bloom!!  LOVE your analogy!!  Your orchids are BEAUTIFUL!!  

    Isn't it amazing how just chatting with all of you makes asthma less intimidating?  Still a monumental struggle at times but just knowing that you other folks are here makes all the difference.  Not Team "Asthma" , but Team "We Will Make It"  !!     (Hear all the cheering from the stands??    &nbsp

  • Deborah Bartlett
    Emelina posted:

    Deborah, thank you so much for your kind words. I see angel wings under the hero cape. It takes someone with an enormous heart to give and guide others. 

    Lisa, I definitely hear you about coping well some days and amazingly bad on others. Steroids do weird warpy things to the mind and emotions. I broke down bawling in my car when I was talking to my doctors nurse when I was asking if the orders for the methylpred were in so I could go into infusion and get it. The stress of just wanting to feel better and having so many barriers pop up all cane flooding out. Gosh, I can’t imagine giving up a life’s passion for therapeutic riding. But I totally agree the good lord is in control and he’s got a plan. My favorite poem is the footprints poem. I think everyone we meet, every challenge, every triumph. It happens for a reason. There’s something to be learned/gained from every interaction. He’s trying to teach me something and guide me to the next step. I cried a lot over resigning this job, but in my prayers I feel he’s telling me it’s ok. I’ve helped the people I was meant to heal here and he needs me somewhere else. I’ll post a picture for you below. You and cynthia are right, it’s now, not forever. There is always hope. I have that engraved on the underside of my wedding ring. 

    Shea, I agree with Lisa, you have a gift with words and perspective. I love the analogy to an injured leg. It’s not the enemy, it’s part of me. I think I’ve been screaming at the leg, hoping it would fall off or just disappear. I like too how you explained how you care for the injury around others and the “kids” that just don’t get it or care to. No don’t dump me, no I’m not going to run on it. Beautiful. That helps change how I look at these last few months. Yes, you could neglect the leg so much it needs to be amputated but then that would leave you less whole. Thank you. You have a gift with words. I think you hit the nail on the head, it’s also a challenge to come to peace with the injured leg, but also how you perceive and see yourself. I looked in the mirror and could see the changes from steroids and all of the fights with work and doctors and forgot this is just one stage of recovery, not my forever. The wound heals, the skin regrows, the braces and crutches can be weaned, and eventually maybe you’ll walk with a scar and a limp, but there’s always hope. 

    Thank you all so much for your kind words and giving me a safe space to cry and scream. Yesterday was miserable. I had to lay down several times. It took me 6 hours to eat lunch, was too nauseated to eat dinner. I was scared because nebs weren’t working, then I was left with no back up and people who still needed to be cared for. I seriously considered finding an adult diaper I was coughing so hard while trying to dictate my notes and keep up with people coming in. Then the diarrhea started from upset tummy from antibiotics and stress. I was the textbook definition of one hot mess. But, it was still a good day. Everyone was cared for. I got to participate in some very challenging but rewarding family discussions and comfort those in need. I finally left work at 2:30 am but crawled into bed feeling satisfied that I did my best and made a difference for those that I cared for. 

    As a lighter aside, sometimes you gotta find humor in this. I guess that’s the other coping mechanism I like. I have so many bad jokes I make people groan, but i think it helps build the therapeutic relationship. As I was taking my medications this morning, I just had to laugh. Between the methylprednisone in my butt, fluticasone in my nose, trelegy in my lungs, and singulair and azithronycin in my blood and strong cough medicine up in my brain, something just has to work. But more importantly, with a group of inspiring, strong, funny and resilient people like you in my heart, I have hope that this is just a speed bump. You give me something no drug ever could. Thank you so much. As bad as yesterday was, you guys were there too. Between computer work I’d eyeball the forums thinking if they can do this, I can too. 

    This picture is my version of the foot prints poem but in a slightly colder mountain plains setting. Thank you for making me feel less alone and scared.

    Thank you Em, so much for being Em!!! Such a lovely picture! So calming and peaceful. 

    Now…step back and look…with your eyes closed. Imagine this whole group of people in a big circle, holding hands for the biggest group hug ever! Such a warm and comforting thought! 💞

  • Kathy P
    Emelina posted:

    I’m 99.99% sure this latest insane breathing trouble is my old friend asthma and atopy. But the mind does funny games … maybe the doctors can’t control my symptoms because it’s reflux, or vocal cord dysfunction, or a problem with floppy airways or ABPA. All I know right now is steroids suck (this right now is all that’s really working) and it stinks that I’m still in limbo and scared and tired of being sick. It’s exhausting. 

    Hugs Emelina – it is exhausting when it seems you are putting all your energy into just breathing! Something that should come naturally and easily!

    Asthma can and does change over time and other conditions can pop up as well. Have you discussed with your doctor about taking a holistic look at all your symptoms and particularly any new ones to see if other things need to be ruled out (again)? I recently went through that – my asthma was continually being flared and it led the doc down a path of a new diagnosis. I still have asthma, but there is now this other factor/trigger that can be treated.

    If things recently flared, it could be spring allergies. You mention outdoor allergies have always been an issue for you. AAFA recently released a report ranking the . The report looks at pollen and mold counts, medicine usage and access to specialists. That page has the full report as well as excerpts about steps you can take to reduce your exposure to pollen.

    This is what the US looks like today for pollen counts! You can get counts for your area at .

    Another thing that I personally find helpful is to empower myself with information. The more I know about my conditions, the more I feel in control…even if I'm in currently in a flare. It gives me the confidence to talk to my doctor, understand my treatment and what I can control. I highly recommend . The course starts with asthma basics and progresses through steps you can take to reduce your exposure to triggers.

  • LK
    LK posted:

    Wow.  Just wow.  Cynthia and Em you both have said it so well!!  Really puts it in perspective.  Thank you!!  

    Em,  Way to go getting the orchid to bloom!!  LOVE your analogy!!  Your orchids are BEAUTIFUL!!  

    Isn't it amazing how just chatting with all of you makes asthma less intimidating?  Still a monumental struggle at times but just knowing that you other folks are here makes all the difference.  Not Team "Asthma" , but Team "We Will Make It"  !!     (Hear all the cheering from the stands??    &nbsp

    Sorry for the gobbledygook at the end there!  I typed the end parenthesis after the big grin emoji, but it turns into that nonsense with the winking face!  

  • LK

    Hadn't seen that map before, Kathy!  Very interesting and informative!  Thank you!  Totally agree that the more information we have, the easier it is to talk with our doctors and to just have a better handle on things in general.

  • Pljohns

    EM-other have said it so well.  It's a journey-a marathon-not a sprint-Almost 2 years ago, I was the person hunting for something-didn't know what, but hunting.  I found this forum.  At that time, I was the person who was hiding in the bathroom to do nebs or not doing them at all.  I've come full circle-i can and do advocate for myself but am still easily hurt by comments that send me into hiding again.  I'm a think skinned person-except for on this-having people to talk to makes it SO much better.

    I was very fortunate to find a very special friend that took a chance on me and has been there for me when no one else understood.  I can cry on her shoulder, rant when I need to or just sit there and she always has a hug, a text of compassion or something that helps so much.  

    Your orchid is beautiful!  DH's company sent me one once when I was just out of the hospital-they knew I couldn't handle smells so they didn't send cut flowers and knew and orchid had basically no smell so they sent me one.  Unfortunately I didn't keep it alive (I want to try another one) but it was beautiful.

    Hang in there-we are here for you any time you need someone-this is an AMAZING group of people that have helped me more than I can ever say.

  • Shea

    Very beautiful comments by everyone, I really love this group! Thank you all for being here, for being compassionate, and for sharing the goods and bads.

    Lisa, I appreciate how you shared that we all have our "bad" moments and days– sometimes months- with the disease.

    Kathy, thank you for sharing the map and just reminding us that these triggers (like high pollen) are real and we do have things we can do to better control the disease during these months. Remembering what I can do and seeing improvements from it has been a huge anxiety-reliever for me.

    Just lime Em's orchid, I do think all that research we do and tips we share, and checking in on here with eachother, really does help us and that it brings out a rare beauty in us that blooms in these harsh times. I love that!

    Cynthia, I like how you said to embrace the feelings and allow yourself them. I am a firm believer that it is OK to feel depressed, anxious, angry– and accepting and processing the feelings can take time but I think they– like other parts of us– are signals to listen to, not to drown out or villify. BUT, that being said, just like our asthma sometimes gets sooo bad we need an inhaler to help open up our airways and breathe in oxygen– any one of us MIGHT at some point get so depressed, anxious, or angry that reaching out to a psychologist or psychiatrist can be helpful in getting things back in balance too. I haven't myself before, but I went to school for psychology and worked at a treatment center for mental health and substance abuse for over 4 years, so I have a BUNCH of tools that I have learned and use every day to help me cope. A lot of people have tools from their religion or spirituality as well (as do I). I love the footprints poem, and the faith-sharing, from family, friends, and community (like ours here). But even with that, there were certain points where– if certain key events had turned out in my life different– I had numbers written down to call– of therapists that took my insurance– for if I needed help  because I knew I had a breaking point (a lot of it was when I was going through court hearings about timeshares etc with my son and my now-ex, his father and wasnt sure how theyd turn out or if Id be able to cope eith certain results so I had he numbers yo hold onto)…. And I thank God that my prayers for help were answered and my parents, my lawyer, the Guardian Ad Litem, my son's doctor, my doctor, all came through and that my now-ex has stopped some of the things he was doing before and that I am able to be with my son fulltime here with me.  This group was here for me too back then and I was teetering on a breaking point that it was really a lifesaver for me. I will be eternally grateful for you all– both for then, in tbe hardest time, and now as things have calmed down. But if anyone feels like they need extra support at any point in time, I just want to remind you that there are amazing therapists of all different types out there that can help give tools and/or meds depending on what you are comfortable with (which I had learned in schooling and in my previous work that either method can be very effective) in battling depression, keeping anxiety or anger at bay, and making sure that they do not become too overwhelming. 

     

  • Emelina

    Thank you all so much for your replies, love and support and understanding. I meant to write back yesterday but thankfully finally slept for almost 8 hours straight. 

    Cynthia, you are absolutely right. I like the idea of giving myself permission to experience those emotions. I think it is harder when you fight it or get mad for feeling those feelings. A therapist once told me it’s ok to experience strong emotions. But learn to see yourself as separate. They are like clouds that come over you. Experience them when they come, but recognize what they are, and then let them drift away.

    kathy, I really like your idea of keeping an open mind and watch out for other conditions or triggers. I’m going to make an appointment with my pcp for this week and ask him. I’ve had mild reflux in the past so had some questions for him, like should I try a antiacid med. thanks for sharing the map. Holy cow! I didn’t realize I was one step below red. That’s a horrifying thought, ugh. I’m horribly allergic to outdoor things especially grasses and am surrounded by large sprawling pastures.

    lisa, it is amazing how just chatting breaks down the fear, uncertainty and frustration that comes with trying to gain control and make peace with very hard to control diseases. It’s weird too, I can talk to RTs and pharmacists and PCPs and friends, but it’s not the same as talking to you guys. It sounds odd, but it’s so comforting to hear the same words “it will get better” or I understand from you all. You’ve been here, you’ve done the pred somnia dance and left jobs because they were hurting your health. Thank you guys. You guys give me so much hope and are people I look up to for your grace and strength.

    lynn, I am so glad you have that special friend who you can commiserate with and lean on for strength, or a shoulder to cry on. I have a good friend like that. She’s one of the first people I call. She lets me vent without judgment. She sat with me in the hospital so I felt less alone and celebrated with me when I quit my job. We all need friends like this. They are such blessings. And thank you again for being so open and sharing your experiences. 

    Shea, you bring up an excellent point of knowing when to ask for more help if the emotions become too strong or overpowering. Just like medical illnesses, there is no shame in the mental illnesses or needing a therapist to help one dig out and move forward! 

    I know I’ve said it many times, but thank you all for your warm welcome to this group. I have learned so much in so little time. You guys are teaching me how to communicate better, how to care for self and be proactive. Literally, thank you for helping save my life and making me feel less alone. Yesterday I was so exhausted and methylpred made it too hard to concentrate to respond, but I read your kind words and encouragement over and over, it helps soothe all the fears and uncertainty. You all are so amazing. So grateful I found you all.

  • Emelina

    Not coping well today; it’s a Ben and Jerry’s day. Today just generated a ton of fear with no response from anyone at work; I finally got confirmation that they are looking for coverage after calling another person in the admin tree at 6pm after assurances that someone from HR would call me before the end of the day. God bless him for responding. No response after > 72 hours is just unnecessary and cruel.

    I’m excited and grateful for the upcoming appointment in Denver, just scared of more waiting. It’s odd, everything should be lifting my spirits but I still feel scared. The high dose prednisone is still messing with my appetite and emotions, still very dizzy and queasy and still dropping weight. I think some of this is isolating as well to be cooped up in the house and unable to share what’s going on with others. Mostly though, I think it’s the fear of the unknown and hoping these scary days are really behind me.

    Cmon lungs and body: behave or I’m kicking you to the curb. Got better things to do then feel lousy!

  • LK

    Oh, Em!  I completely understand the out-of-proportion emotions on pred.  The ups and downs, the inexplicable moodiness, and the being cooped up and not having the interactions with other people does mess with your mind and emotions.  This last winter I had to reduce my activities so much and was at home the vast majority of days.  It really does have an unpleasant effect on a body.

    We are always here for you!!  You will get through this!!    

  • Emelina

    Lisa, exactly, its the entire experience, not knowing, been cooped up, missing out on interactions, the medication side effects and reducing activities that normally bring joy, that makes this so tough. But thankfully the tough days are balanced by better ones and amazing people like you who offer an ear. 

    Thanks Melissa for the hugs. Right, the unknown is scary. The limbo wait too for answers is so tough. I think the people that have it the worst are those who are told they have a suspected cancer and still have to wait 2-4 weeks to see a specialist and get biopsies and body scans. 

    The limbo wait anxiety still persists, but I’ll take the good news. The spirometry numbers look good on this maxed therapy so the high dose steroids haven’t been for nothing, and workup is in progress for eligibility for a biologic. Other big stuff is the chest CT and echo. 🤞 giving advair a second try as hfa works! 

    Just keep swimming 

  • Pljohns

    EM   There are several of us that know all too well how awful it is.  It's like it just keeps piling up more and more.  the last time I was in the hospital, I came out on so many meds, home 30 days on medical leave and just doing really badly.  No one understood, I was scared-it was awful.  Glad they are at least looking for coverage for you but they are just beyond words at how they are treating you.  There is just no excuse for it.  

    Take it by baby steps-I know we have to look at the big picture but sometimes the big picture seem WAY too overwhelming so take it one thing at a time-you've had the allergy testing, paperwork is underway for biologic and things are in motion for being seen in Denver.  That's a lot at once-hang in there-it does get better I promise

  • Emelina

    Thank you lynn for your kind words and the buckets of support. It’s funny how I’ve been cycling still through all of the stages of coping. I still scroll back up and read all of the words of wisdom. Thanks too for reframing the progress that has been made. That really helped to step back and look from 35,000 ft and embrace the good. 

    Hmmm, I think I have an addendum to no wheezy land … discharge facilitators and navigators. I don’t think people in medicine understand how hard the transition from hospital to home and back to work can be, and especially how difficult coordination of care can be. Next week I gotta tackle getting all of my imaging and blood work sent/faxed/carrier pigeoned to Colorado. But like you say, one day at a time. 

    The other thing that I think is hard, is suddenly transitioning from young/well to young/sick. When you’ve been healthy for so long, then things nose dive quickly, even the hospital check in, radiology and echo techs were doing a double take. But, fingers crossed, answers and better health and control is coming! 

    Ugh, work botched this FMLA so badly, and basic support for an ill employee. I’m going to definitely “voice” my concerns with vigor once stronger and feeling better. There is lots of room for improvement and that’s putting it as Pc as I can. 

    Thank you again Lynn. You are awesome! 

  • LK
    Emelina posted:

    Thank you lynn for your kind words and the buckets of support. It’s funny how I’ve been cycling still through all of the stages of coping. I still scroll back up and read all of the words of wisdom. Thanks too for reframing the progress that has been made. That really helped to step back and look from 35,000 ft and embrace the good. 

    Em,  Good to see you still have your sense if humor!  The  view from "35,000 feet" does give some perspective!  

    Emelina posted:

    Hmmm, I think I have an addendum to no wheezy land … discharge facilitators and navigators. I don’t think people in medicine understand how hard the transition from hospital to home and back to work can be, and especially how difficult coordination of care can be. Next week I gotta tackle getting all of my imaging and blood work sent/faxed/carrier pigeoned to Colorado. But like you say, one day at a time. 

     

    I like your addendum!  Definitely a good idea!  You will make it!!      

    It has to be particularly hard to be this sick when you are young and I am sure most of the hospital stall were doing a double take but I assure you, it is no fun to go from being a fairly healthy middle-aged lady to this either.  Not trying to minimize what you are going through by any means!  Guess any sudden transition from fairly good health to severe asthma or any other severe disease is a shock.

  • Emelina

    Thanks for your kind words and support Lisa. Gotta cling to humor or this all gets way too serious. You are so right, a transition from health to illness is no fun at any age. I keep putting myself in the young bucket but I’m almost 40, have 3 boys and a growing collection of white hairs! So annoying when eyebrows come in white! Traitors! Thanks for keeping my feet on the ground and my head up. Dunno how I can repay/thank you for you care and concern.  man, I gotta look at the emoji thread and up my game. 

  • Deborah Bartlett

    Learning to cope with lung disease is not an easy thing. But we do learn! We have no choice. We can still have a good quality of life, but in different ways. I thank God every day that I am here. Thankfully, you're all here to share life along with me! 😂💕💞

  • Deborah Bartlett

    You know- I was extremely healthy my whole life. I always ate well. I worked out every day. I walked alot. I was very active. Never had a lazy bone in my body. Illness crept in and took over. I battle illness each day. I do my best to win the battle! 💪

  • Breatheeasy
    Deborah Bartlett posted:

    You know- I was extremely healthy my whole life. I always ate well. I worked out every day. I walked alot. I was very active. Never had a lazy bone in my body. Illness crept in and took over. I battle illness each day. I do my best to win the battle! 💪

    I was very healthy too. I first started having issues from a viral fever. Pretty sure that’s how I ended up with asthma. At first it was intermittent now it’s almost chronic. 

    I guess I have no choice. I thought I was going to recover from the flare-ups pretty fast. But then I realised its persistent and I need some strong meds to control it. But at least there are good days that I am thankful for. And I have been hoping to find a way out of this. ‘Hope’ – it keeps me going.

  • Deborah Bartlett
    Breatheeasy posted:
    Deborah Bartlett posted:

    You know- I was extremely healthy my whole life. I always ate well. I worked out every day. I walked alot. I was very active. Never had a lazy bone in my body. Illness crept in and took over. I battle illness each day. I do my best to win the battle! 💪

    I was very healthy too. I first started having issues from a viral fever. Pretty sure that’s how I ended up with asthma. At first it was intermittent now it’s almost chronic. 

    I guess I have no choice. I thought I was going to recover from the flare-ups pretty fast. But then I realised its persistent and I need some strong meds to control it. But at least there are good days that I am thankful for. And I have been hoping to find a way out of this. ‘Hope’ – it keeps me going.

    Keep on going, Breatheeasy! 

  • Emelina

    Thanks debbie and breatheeasy for sharing your experiences and thoughts. It is tough, but you are right, be thankful for the good days and cling to hope. 

  • Emelina

    Went hunting for inspiration, I think these are perfect. The main thing I need to remember is not to be frightened/disillusioned by the ups/downs and not to despair. This too shall pass and the days won’t always be so hard. Despite physical pain, just keep swimming! 

  • Deborah Bartlett

    Every single aspect of my life has changed, living with COPD and severe asthma. I have adapted. I have no choice. 

    DH is not happy with these adaptations. There are many things he will continue to do without me. I stay on the sidelines and have learned to be alone much of my life. I am happy with what I have. Glad to be here to greet each day! We must learn to manage our health and go on with a positive outlook! Simple things in life CAN be the best, if you let them be! 😊🌞

  • LK

    Glad you are here Debbie!  

    By the lady who wrote the Little House on the Prairie books, Laura Ingalls Wilder.

  • Deborah Bartlett
    LK posted:

    Glad you are here Debbie!  

    By the lady who wrote the Little House on the Prairie books, Laura Ingalls Wilder.

    😂😂 Thanks Lisa! So very nice of you to post this! I saved the image. So inspiring! (((((hugs)))))💕

  • Shea

    It helps me to think there has gotta be a reason behind some of this all– and to look for it. Why are so many people allergic to the same things? Is there something god or nature is trying to communicate with us? Pollution, imbalances in nature, imbalances in life (some that seem so far out of our control and some not our fault at all, but a product of sharing the earth and inheriting the problems of generations of the past) … In so many ways, we see pain and discomfort and think of it as bad, but I think itd be worse if we were numb or unaware of the problem. I try to see the problem, and the reason behind it, and I seek to be part of the solution. I try to control the pain and symptoms to the best of my ability through it all. I find knowledge, communication, and the spread of awareness to others who are not experiencing the pain, as good things (when they are responsive and compassionate at least– but sonetimes I take breaks and tend the wounds alone too, especially when responses from others are callous).

    Like frogs who feel the effects of pollution first and are "indicator species" to problems due to things in their nature– thinner more absorbant skin, sensitive nature– we are "sensitives". And people respect different animals' natures by understanding not to touch frogs as things in your skin can cause them problems. If they are ill or dying in a pond, people look to the source of the pollution.

    There are people who care and are spreading awareness and making changes– some with asthma and allergies and some without. When I remember this, I feel better. I cope better. And I find it is OK to be unique and have my own needs that differ from others. I try to find a way for us to each be respectful of eachother. I accept my nature and work with it, but also try and negotiate with it and find greater freedom through different tools, masks, medicines. 

  • Emelina

    Shea, that is beautiful! Thank you for your insight and way with words! I completely agree with you. It’s interesting that you wrote about pain and discomfort. I remember reading about people who are born with a mutation that prevents them from feeling pain and their life is so hard and shorter than expected. One thing the mother has to do every night is inspect her child from head to toe for any injuries and especially the eyes; since the kid couldn’t feel pain, it’s easy for sand/grit to get in the eye and cause serious corneal abrasions. 

    I do wonder like you mentioned about what is happening to us as a species as allergic and autoimmune diseases rise. Something is definitely not in balance; I like your analogy of the sensitives and the indicator species like frogs. You are right; communication, awareness, all great things. Also accepting oneself, being ok with being unique and using the tools available to thrive … wonderful lessons for us all Shea. Thank you for your fantastic perspective and grace with words. 

  • Emelina

    Metamorphosis.

    Just a little reflection; I’d hoped to work on a painting to convey these thoughts but have a touch of the prednisone tummy, so this will have to do. 

    When things spiraled several weeks ago and I ended up in the ER, then admitted and suddenly on leave, I was very frightened, scared, alone and angry. What in the world was going on, I don’t have time for this! I was frustrated with my body, didn’t understand this new phase of my disease and spent many days mourning and sad. It felt like my old life was over. I felt betrayed by my body and trapped and ashamed to be sick, and scared to have to be dependent on others for support (I’ve always been the strong, keep going one). 

    What I didn’t realize was a metamorphosis was about to happen. A change that I am now grateful for. I like to think about the caterpillar, fat and charged with energy going off on its own, finding a suitable spot and beginning the cocoon formation process. This recent illness now seems like this remarkable transformation, because I can now see the other side of the cocoon and what comes next. 

    Where there was once fear, anger, hurt, loneliness, mourning, and shame, there is courage, strength and understanding. As Lisa suggested, I try to focus everyday on the good and let the painful things go. I feel grateful for you all, this amazing community for buoying me up when I felt too weak to swim in the stormy seas and reminding me that I’d get through it. Thank you for sharing your own stories so openly and reminding me that this journey would be surmountable too. 

    It definitely has not been easy, and the bumpy days are not all gone, but now that I can see my wings, I am grateful for this transformation. It means leaving behind the old me, but gaining a new better me, who can accomplish more than what I could as a caterpillar. I’ll keep reading, working through education courses, asking questions and work on learning how to use these new wings. And ultimately, I think I’m making progress. This recent health struggle and adjustment to life with lung disease is not all bad; with continued work, I hope it will make me a better mom, caregiver, friend and caretaker of my own health and well-being.

    For those struggling, remember it can’t rain forever, there is always hope and together, we’ll get through this. 

  • Emelina

    I have to give a nod to Shea, I think she was the first to bring up the cocoon/butterfly analogy. It takes a leap of faith to transform, but ultimately you will be better and stronger and more resilient. 

    The other pearl I’ve learned is try not to let the darkest days overwhelm you. When you are in the deepest, hardest, worst breathing and body days, it is really hard to see over the waves. When that happens, don’t despair, reach out for support and remember better days are coming. All storms have an end. Coping and processing is so much easier now that an acute flare is over. I guess what I’m trying to say is lung disease is tough, and if some days all you can do is just survive and put one foot in front of the other, and just focus on breathing, that’s ok too. It’s a marathon, not a sprint. 

  • Deborah Bartlett
    Emelina posted:

    I have to give a nod to Shea, I think she was the first to bring up the cocoon/butterfly analogy. It takes a leap of faith to transform, but ultimately you will be better and stronger and more resilient. 

    The other pearl I’ve learned is try not to let the darkest days overwhelm you. When you are in the deepest, hardest, worst breathing and body days, it is really hard to see over the waves. When that happens, don’t despair, reach out for support and remember better days are coming. All storms have an end. Coping and processing is so much easier now that an acute flare is over. I guess what I’m trying to say is lung disease is tough, and if some days all you can do is just survive and put one foot in front of the other, and just focus on breathing, that’s ok too. It’s a marathon, not a sprint. 

    You're not kidding. Some days, we just make it through the day. Other days are more productive. It's okay!

    Old Deb's quote if the day: Why race, when you can pace. 🏃➡🚶

  • Melissa G

    Wow, Emelina! What a powerful message.  Thank you for sharing all that you have been going through. 

  • Breatheeasy

    Everyone I know has allergies except for my ex-husband. It’s so common. And those who don’t have allergies or asthma have some other chronic health issues. It’s rare to see people that are totally healthy once they hit 30.

  • Deborah Bartlett

    So true, Breatheeasy. I only know of 1 person who is my age-55, who miraculously has never had any health issues. Every one else I know how something going on with their health. 

  • Deborah Bartlett
    Emelina posted:

    Metamorphosis.

    Just a little reflection; I’d hoped to work on a painting to convey these thoughts but have a touch of the prednisone tummy, so this will have to do. 

    When things spiraled several weeks ago and I ended up in the ER, then admitted and suddenly on leave, I was very frightened, scared, alone and angry. What in the world was going on, I don’t have time for this! I was frustrated with my body, didn’t understand this new phase of my disease and spent many days mourning and sad. It felt like my old life was over. I felt betrayed by my body and trapped and ashamed to be sick, and scared to have to be dependent on others for support (I’ve always been the strong, keep going one). 

    What I didn’t realize was a metamorphosis was about to happen. A change that I am now grateful for. I like to think about the caterpillar, fat and charged with energy going off on its own, finding a suitable spot and beginning the cocoon formation process. This recent illness now seems like this remarkable transformation, because I can now see the other side of the cocoon and what comes next. 

    Where there was once fear, anger, hurt, loneliness, mourning, and shame, there is courage, strength and understanding. As Lisa suggested, I try to focus everyday on the good and let the painful things go. I feel grateful for you all, this amazing community for buoying me up when I felt too weak to swim in the stormy seas and reminding me that I’d get through it. Thank you for sharing your own stories so openly and reminding me that this journey would be surmountable too. 

    It definitely has not been easy, and the bumpy days are not all gone, but now that I can see my wings, I am grateful for this transformation. It means leaving behind the old me, but gaining a new better me, who can accomplish more than what I could as a caterpillar. I’ll keep reading, working through education courses, asking questions and work on learning how to use these new wings. And ultimately, I think I’m making progress. This recent health struggle and adjustment to life with lung disease is not all bad; with continued work, I hope it will make me a better mom, caregiver, friend and caretaker of my own health and well-being.

    For those struggling, remember it can’t rain forever, there is always hope and together, we’ll get through this. 

    You have to jump through alot of puddles to get to the pavement. 😄

  • Shea

    Em, thank you for your compliments and all you shared. I am never sure if the things I say and feel will resonate with others, and it is a true comfort to know that you share so many of the feelings and insights I have. You also have a beautiful way with words, art, and compassionate understanding of what others are going through. I feel like I am riding the same wavelength as you– even being busy and away from the forum for a few days, I have been meditating on metamorphosis a lot. Tommy and I found adult tree frogs under our backyard umbrella yesterday after my frog comment– and have been researching water purification for his science project, so we made a honemade filter and filtered the hose water into his sand box to make a spot for them to lay their eggs (they are very sensitive to chlorine in water). I dont know if they will… But everyone elses lawn has dogs and pesticides, and not much water nearby anywhere, so I felt it was my duty. I actually think these frogs travelled from my old house to this house in lawn furniture, and, in my old house, Tommy and I raised these tadpoles we found in my mom's water fountain into frogs when he was like 3 or 4 years old. It was cool. We saw them the year after too hopping around in our carport and yard of our old house. And when I first moved here last March I found them in lawn furniture, and found some hatchling little tree frogs after that and set up our sandbox as a habitat. I havent seen them anywhere else in the neighborhood. So now we see them and its the sane type and they're big now. This is like 4th season of these tree frogs and/or their family with us. I hope they lay eggs. I am fascinated with metamorphosis, and I feel most of us here have had to make major transformations and are sensitive as well, so frogs, butterflies, dragonflies–all speak to me. AND they eat mosquitoes!!! (Which I know I will have to change the water alot in the sandbox so it doesnt breed too many mosquitoes!!!– Ill have to find the right balance with that!!!) I have seen dragonflies in my yard too so maybe they will lay eggs in the water– I know they start as larvae stage nymphs and then come out of their old skin with wings and fly. 

  • Emelina

    Thank you Debbie for your beautiful butterfly picture, quote about race v pace and puddle jumping

    Melissa, thanks for lending an ear. I’ve always liked to write to help process this insane crazy and beautiful thing called life. I like to think that sharing can be healing for me, and helpful to someone walking a similar path in the future.

    Breatheeasy, good point about aging and health issues. That’s a good reminder that we’ve all got chronic conditions as our bodies age. Drat! If I only knew the elementary/childhood years were the best I wouldn’t have wanted to race them so quickly. No work, no taxes … !

    Shea, your words make me smile. Please continue sharing your insights and reflections. The world needs insightful and sensitive people. The tree frogs are amazing! When I was growing up I would rarely see them in my yard and always greeted them as special visitors. That is so cool that the family has been with you and is using your yard as a refuge. I didn’t realize that about their sensitivity to chlorine but it makes sense. So cool that you guys were able to incorporate the water purification research into setting up a system for the frogs. It looks like a frog haven! I hope you are rewarded with tadpoles or dragon fly nymphs very soon. Yes to the added bonus of the babies eating mosquitoes. I hate mosquitoes so much, I think I must be extra sweet. Whenever we’d go camping with family, I’d always be covered in their little bites, ouch! Thanks for your kindness and encouragement and sharing of your stories as we all walk through these changes and work on finding that better more in balance form. Change is hard but certainly better than being frozen in time.