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Grace

Hi all, I often turn to writing to heal. I started writing this, but can’t share on Facebook, so thought I’d leave this here. Thank you for being so instrumental in my recovery. 

Grace 

A severe illness is terrifying. It stops you in your tracks and turns the world on its head. I thought I understood medicine and disease, but I really knew nothing. Resting on a CT scanner bed weak and scared, or going through blood draws, IVs and ultrasounds – the experience of illness and the unknown strips away feeling of control. I knew “symptoms” of diseases but didn’t realize the burden of living with them 24-7, fearing them, struggling with them and suffering through them (“I can’t breathe.”) I didn’t know the desperation of being told “I don’t know what’s going on with you, you should see a specialist” and having to wait over 4 months to see an expert. 

I saw the ugliness that can accompany disease. Disbelief, denial, humiliation. You’re not that sick, just get over it, figure out how to do this on your own. 

But I also saw grace and mercy. I saw complete strangers open their hearts to me, welcome me into their circle and bear their scars, experiences and vulnerability so I wouldn’t feel alone. I had pharmacists see me sitting in the waiting room shivering and coughing and they would stop me after picking up a medicine and say next time, just call, I’ll drive this to your house. I had old mentors who dropped everything and personally approached In person, the best pulmonologists in the country, to ask if they could possibly squeeze me into their clinic. I had friends who came to the hospital and sat with me, guarded who could come see me to protect my privacy and who loved me enough to say the honest truth that I needed to prioritize myself and self care. I had friends who said I will drive you wherever you need to go because you are too weak and sick to go alone, 5 states away if need be, so you can see the experts you need to heal. I met new lifelong friends who gave me their phone numbers and said call or text whenever, and meant it. They were there for me in the depths of despair, fits of rage and all of the emotions of chronic disease. 

I saw hope; I saw love, and mercy. I know I couldn’t have done this alone. I thank God everyday for people like you who are helping me navigate one of the hardest challenges of my life. Thank you for saving my life and keeping hope alive. We are better together.

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Comments 27

  • Shea

    Thank you Em for sharing this message. It is easy for me to get caught up in the darkness and negativity of my disease, but there are shining stars through all of the darkness too. Thank you for being one of them. 

  • Wheezy Me

    Emelina, beautifully written! Thank you so much for sharing your feelings, and for being a part if this community!

    Every cloud has a silver lining; this forum is definitely part of the lining around asthma. So are supportive family/friends/medical staff, responsibility, determination, knowledge, and other ways we all adopted to grow above it.

  • LK

    Em,  As Melissa said, you are so eloquent!  You have put pen to paper and written down what many of us have thought at one time or another and situations many of us are probably going through right now.  Thank you for posting this.  There is always HOPE!  

  • Emelina

    Thank you Shea, Melissa, Wheezy Me and Lisa. Thanks for reading the little blurb above. There’s just so much to absorb, process and feel. Thanks for giving me a safe space to let it out – especially in the company of those who have lived it. Best Em

  • K8sMom2002

    Em, thank YOU for putting to words the feelings I've had over the years. It helps me, too, to remember that any peace and resolution I have now is the product of people who care deeply about me. 

    You ARE in a safe space. You are not alone. You're with people who care and who understand.

  • Deborah Bartlett

    Together we are ONE. There is no other group like this one. 

    Em- so very touching! When no one else in life understands-we sure do! 

    Let's all make this a marvelous Monday! There are lots of good things in this day. There are plenty more coming our way tomorrow. Keep on believing-because we will make it through!!! We always do! ☺☺☺

  • Deborah Bartlett

    That's right Em! You know who you are, and what you are capable of…which is a whole lot! Don't ever let anyone cause you to feel less than what you are. You are a wonderful young lady! I feel proud to know someone such as yourself! Plus….you make really tasty fajitas!! WooHoo! 😀

    Hope your day is a good one! ❤

  • Wheezy Me
    Deborah Bartlett posted:

    That's right Em! You know who you are, and what you are capable of…which is a whole lot! Don't ever let anyone cause you to feel less than what you are. You are a wonderful young lady! I feel proud to know someone such as yourself! Plus….you make really tasty fajitas!! WooHoo! 😀

    Hope your day is a good one! ❤

    Deborah, I agree with everything you wrote!

    But how do you know how her fajitas taste? 

  • Deborah Bartlett

    I know they taste good because of the picture she posted! She put alot of care into those fajitas! How could they have been anything but delicious?!?

  • Emelina

    Thanks Debbie and wheezy me, sorry for taking the original pictures down & note as you were writing. It didn’t quite capture what I wanted. I guess all I wanted to say is this is scary and tough. I get frustrated with myself and say it’s time to move on, but it’s a hard hurt to heal. I get so frustrated with people who minimize what we go through, or say just try harder, or through their actions and words make us feel less competent and capable just because our lungs don’t work properly. I wish I could show the turkeys who discounted me how hard I tried to keep going (nebbing at my desk, nebbing in my office, vomiting in the bathroom from coughing so hard, delaying care to care for others) before I had to take leave to save myself (going to the ed, clinic or urgent care frequently and losing weight is no way to live).

    The limbo period is scary too. When recovering from a nasty flare that made you so sick, there’s that tiny piece of your mind that wonders will it happen again? I tell myself it will be better if it does; I’m wiser and have a care team now. It’s just hard when you have little guys to support. The brain knows I’ll be ok (the world won’t fall down if I need to take a break from working and send dh into the workforce). It’s just a matter of telling the heart to be strong. The world may never truly get it (how can they? They have normal lungs), but that’s ok. Because I know what I’ve been through, and I’m determined to keep fighting. Asthma won’t win and neither will those who try to hold us back.

  • Deborah Bartlett

    We can do our best. We can't do any better than that! You do your best…the heck with the rest. Sometimes life is just a test. Take care of yourself in your own cozy nest. In other words, don t let other people upset you. There are alot of wrong and messed up things out there. You can live your life in a good, happy, positive way! ☺

  • LK
    Emelina posted:

    The limbo period is scary too. When recovering from a nasty flare that made you so sick, there’s that tiny piece of your mind that wonders will it happen again? 

    The world may never truly get it (how can they? They have normal lungs), but that’s ok. Because I know what I’ve been through, and I’m determined to keep fighting. Asthma won’t win and neither will those who try to hold us back.

    Em,  During my recent many-months-long flare, I have had a few re-flares and those are disheartening because you just start seeing improvement and WHAM!  something sets the lungs off again.  A large part of my mind wonders if/when it will happen again. 

    I wonder if instead of wondering IF it will happen again, to figure that it WILL happen again BUT, as you say, you are better prepared to deal with it now.  Perhaps decide it will happen at some point, so if it does you are prepared and if it doesn't then you count your blessings. 

    Good point about the world never truly getting what it is like to live with our lungs since most everyone else has normal lungs.  

  • Emelina

    Thanks wheezy me, Deborah and Lisa for your thoughts and encouragement. You guys are right, words hurt, but they are just that. Words. Not sticks. Not stones. They only cause as much damage as you let them. I like your saying Debbie, do your best and the heck with the rest. I also like the idea of staying cozy in your nest and excluding all else and not letting anyone ruffle my feathers. Good point Lisa about the big flares and the little flares that follow that gets the mind spinning/thinking. I like the suggestion to think yea, it could happen again, but it’ll be ok, rather than living in fear. Better to be prepared and ready than scared. Thanks guys for helping me shift my point of view. 😁

  • Emelina

    Faith and friendship

    Living with chronic illness is hard. I don’t think you can truly understand it, unless you live with it. Sometimes I stand in front of my cupboard and look down on the crowded shelf with medicine bottles, all with my name, and wonder when did this happen? There are days I wish I could pick up all of the bottles and throw them in the trash and walk away, straight back to before all of this. It is tough taking 10 medications per day to address what is going on in my body so I can function and feel normal.

    The train of doctors is hard too. More symptoms, more tests, more scopes, more worry, more meds (?), but you keep those feet shuffling forward in the pursuit of hope and well being.

    Some days are tougher than others. I haven’t heard my normal voice in almost a month. The fatigue at times can be crippling, a few errands and an outing and I’m spent. The peak flows dance around and sometimes to my frustration they still dip and dive. I look in the mirror and see the return of dark circles despite hours of sleep. Today was particularly rotten. “Friends” are trying to tell me how to get better; you spend too much time in bed and isolated. Just get up and come out! If they only knew, but I wouldn’t wish that on them. 

    Through all of this I have rediscovered my faith. When I feel bad and think why me, faith challenges me to ask why not me? I know I will emerge stronger and more resilient. There is a lesson in the hardship and a new chapter is beginning. 

    I have lost and shed friendships over this recent turn in health, but I have gained others and strengthened existing ones, the true friends. Some people can’t handle the burden of a health crisis and recovery from ill health. But it is for the better. It is better to nurture and be nurtured in the arms of true intent and friendship, than those with other not necessarily mutually beneficial goals. 

    In the midst of this battle, amongst the tears, the blood draws, the doctors, uncertainty and discomfort and frustrations, I’ve found something precious: faith and friendship. With these two things, I know the road will lead to better days. 

  • Deborah Bartlett
    Emelina posted:

    Faith and friendship

    Living with chronic illness is hard. I don’t think you can truly understand it, unless you live with it. Sometimes I stand in front of my cupboard and look down on the crowded shelf with medicine bottles, all with my name, and wonder when did this happen? There are days I wish I could pick up all of the bottles and throw them in the trash and walk away, straight back to before all of this. It is tough taking 10 medications per day to address what is going on in my body so I can function and feel normal.

    The train of doctors is hard too. More symptoms, more tests, more scopes, more worry, more meds (?), but you keep those feet shuffling forward in the pursuit of hope and well being.

    Some days are tougher than others. I haven’t heard my normal voice in almost a month. The fatigue at times can be crippling, a few errands and an outing and I’m spent. The peak flows dance around and sometimes to my frustration they still dip and dive. I look in the mirror and see the return of dark circles despite hours of sleep. Today was particularly rotten. “Friends” are trying to tell me how to get better; you spend too much time in bed and isolated. Just get up and come out! If they only knew, but I wouldn’t wish that on them. 

    Through all of this I have rediscovered my faith. When I feel bad and think why me, faith challenges me to ask why not me? I know I will emerge stronger and more resilient. There is a lesson in the hardship and a new chapter is beginning. 

    I have lost and shed friendships over this recent turn in health, but I have gained others and strengthened existing ones, the true friends. Some people can’t handle the burden of a health crisis and recovery from ill health. But it is for the better. It is better to nurture and be nurtured in the arms of true intent and friendship, than those with other not necessarily mutually beneficial goals. 

    In the midst of this battle, amongst the tears, the blood draws, the doctors, uncertainty and discomfort and frustrations, I’ve found something precious: faith and friendship. With these two things, I know the road will lead to better days. 

    To make a long story short, they just don't get it.

    I know how you feel, Em. And I am saying this because I live this life too. Anyone can say Oh, I know how you feel. No they don't. If I tell my DH that I am weak and short of breath, he says I know. Then I say- you don't know. 

    Carry on! Be strong! 💪 Conquer each day with a big smile! For those who don't understand us, we are sorry. This life was handed to us, and we are dealing with it~~together! 💞😁

  • LK

    Em,  You have such a gift with words.  You have said it so well!  Sometimes God seems to allow low times in our lives so we remember to look to him for all things.  He is interested in every aspect of our lives.  

  • Emelina

    I see you

    I see you, and I know the struggles you’ve faced. 

    I know the day of your diagnosis, when your doctor handed you a prescription and said things may never be the same

    I see you at 2 am with your cough and wheeze and dark circles under your eyes, and early morning nebulizer sessions while the world sleeps 

    I see you undergoing spirometry, challenge testing, visiting specialists, sitting in radiology and wondering what it all means. 

    I see you standing in front of a cabinet of medications and inhalers, and taking them all without complaint 

    I see you in public, wearing a mask to protect yourself from inhalants and keeping a diligent watchful eye out for other stimuli that could send you into a tailspin.

    I see you in the emergency department, urgent care or hospital when things get bad. I  see the scars and bruises on you arm. I see you coping with the side effects of the powerful drugs that help you breathe (anxiety, insomnia, appetite change, nausea, weight gain, and those that you can’t see like bone loss and a slow match towards diabetes). 

    I see you standing strong when family and friends doubt your diagnosis, say you aren’t sick or say you are simply too anxious and this is all in your head 

    I see you staying patient and calm when family says you don’t need those drugs, or try this and you will be cured

    i see you battling everyday against adversity and unkindness but propagating none of the ill will forward 

    I see you striving and succeeding at raising your family despite your complicated disease

    I see you battling back fatigue, fear and pain to get back to a well, normal life. 

    I do not see someone who is weak or ugly. 

    I do not see someone who diseased and looking for an easy way out. 

    I do not see a quitter. 

    I do not see someone who has given up on life.

    i see that the world can be unkind, but I see you flourishing and spreading love and humility instead. I see a kind and gentle soul touched by the fire of asthma. But in asthma’s wake I see life and rejuvenation not scorched earth and devastation. 

    I see courage and determination in you. I see a humble and beautiful soul, and I hope you can see it too. 

  • LK

    Em,  You knew just what I needed this morning.  Thank you.  Your lovely, heartfelt post brought tears of gratitude to my eyes knowing that you and others do understand.  I am glad you can see the "courage and determination" because there are times when I am sure I have lost those qualities!    You have brightened my morning and God knows I needed a bright morning after yesterday!  

    You write so well, I am grateful that you are here.  

    Your post is also a reminder to me that the Good Lord also sees all we go through and is with us through it all. Thank you for the reminder.  

    Brought to mind these verses - 

    2 Corinthians ( English Standard Version)

     Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

    I have a long way to go before I am content with those things but with God's grace I will keep trying. 

    If you don't mind I am going to copy your wonderful post and print it out.  

  • Emelina

    You are welcome Lisa. I wrote this as a tribute to us all, it is awe inspiring to be surrounded by incredible people like you. The link that brought us together, lung disease, though tough and hard, ultimately makes us stronger and more resilient than before. The thing that I love about this group is when anyone of us is going through hard times, rather than being weakened by the struggling member in our circle we rally around each other and become a tighter group. 

    Remember you never lose the qualities of courage and determination. They are woven into the fabric of your being; they just get covered and obscured by the clouds of adversity and pain. I love the verse you shared. He knows all that we endure and will never forsake us or abandon us in dark times. 🕊 

    you are never alone and we are always here for you.

  • Deborah Bartlett

    What I have read has brought me to tears. How touching and true to life. Thank you! 💕💕💕

    I see us as a group of good hearted friends. I see us as people who have been through way more than most people could imagine. We never lose our hope or faith. We may get knocked down some, but we stand right back up again. We have courage and stamina!  We understand things that no one else is capable of understanding. Thank goodness that we have our little group. So reliable and comfortable and safe. When spouses and children and parents and siblings and cousins are not understanding, we are! Count your blessings! We are truly blessed to have each other. Amen. 😇