Disease, dis-ease, di-seased

Let me close June by saying it decisively won over me: my lung situation has gotten so bad I am taking medications I have not needed in years, I am at record weight, and a dread is constantly gripping at me as I fear the return of my really dark times from a lifetime ago.

I am scared, swollen from scalp to toe, literally shaking, and working for every breath. I cannot walk from my bed to the toilet without toil and I talk. like. this. to catch. my breath. Always tired. In pain even when I am just sat.

I am lucky I have the best healthcare available to me from home. If I go to the hospital, I would immediately be sent to isolation to rule out COVID-19. But this predates the pandemic and it will inherit my body in a post-COVID world.

It hurts to be in this situation, physically and spiritually. Every day is a reminder of how I failed to take care of myself, how I failed to protect myself. It is really hard sometimes because I can only control so much. Despite my best efforts, stress has reached my shores, if not unfairly, and here I am burning like Troy.

The problem is I do not recover quickly – I never have. The top pulmonologist in the region has looked after me for over a decade and she still hates me today because “I cannot make you well.” This, even after the best management and a solar system of medications. I guess it is just me.

Of course, life goes on. I am decisively but not completely defeated. I allow myself this small space to explore my negative feelings but no more. At least for today. I will continue to be hopeful and more important, learn from this experience.

The sun will shine tomorrow and there will be more cups of tea. I will probably not be okay, but even that, too, is okay. Someone grind a grilled dead lizard into powder. Maybe that does it.

60 thoughts on “Disease, dis-ease, di-seased

  1. I am so sorry to read this, Micah. My younger son has chronic brittle asthma and chronic sinusitis. He has not been allowed outside because of the dust and pollen for a whole month. Today will be our first foray out into the sunshine. It is hard to live with chronic conditions but you will improve and be okay. Thinking of you.

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  2. Oh Micah! My heart is breaking …
    Sending you a big hug and lots lots lots lots of positive energy. I hear you – it will be a long road before you start to feel better, but I am hoping the best for you and keeping you in thought & prayer.

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    1. Many thanks. I wish your heart won’t break. I am trying my best to keep going, too. I focus on small improvements that I see, like I can speak better now, and remind myself to be patient. Thank you for the support!

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      1. Have been thinking of you these last few days – wishing and praying you lots of positive energy for healing. One breath at a time …

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  3. Wow, Micah, hang in there. Don’t despair and continue to live. My heart goes out to you and wish you can get better. Yes, chronic illness can be debilitating and discouraging, but we deal with it day in and day out. Yes, with patience, you will pull through.

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    1. Yes, thank you. I am open to moments of despair like in this post and let it pass. Now I just have to eat well and move slow and be patient. I can honestly say I see improvements, especially in my mood. It is overwhelming the well-wishes I get from all of you.

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  4. I am so sorry you are going through such tough times, and I can only send you all of my best wishes, strength and positive energy to face this difficult moment. Sometimes it feels good to acknowledge that we are *not* okay, while recognising that we know, some day, things will be. Take your time to heal and recover, to slow down and take care of yourself! I hope things will get better soon ☀️☀️

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  5. Micah I am so sorry to hear about your health situation. I have been missing from the blogging world for some time, but I noticed your lack of presence as of late. I will send positive energy and light thoughts your way. I am glad to hear you have excellent medical contacts. May you grow stronger in body and mind with each passing day.

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  6. My heart goes out to you Micah. I am sorry you are struggling so much to breathe. I can empathize with you. My hope is that you are able to give yourself time and patience for your body to rest and the space to feel your emotions. I understand that chronic illness can take a toll physically and emotionally. I’m here if you want or need to vent 🙂💕

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    1. You would know, Amy. Thank you. And I look to you for inspiration on how to deal with this with patience, and grace. I am able to talk now whereas it was impossible two days ago, so progress.

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      1. You are so kind! I do my best to be patient through all of this but there are moments where I am fresh out of fucks. And that’s OK. Allowung ourselves to feel our emotions is necessary for our health and healing. Happy to hear that you are making progress! I celebrate every baby step in the right direction !

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  7. Micah, I’m so sorry you’re grappling with such overwhelming health challenges.

    Your attitude and mindset will get you through. Half the battle is positivity. And patience.

    As one who lives with a chronic disability that daily impacts my sense of well-being, I can attest that asserting that it will not defeat you, that you can and will adjust and accommodate, is the path forward.

    I wish you healing, positive thoughts!

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    1. I appreciate the vote of confidence, thank you very much. You are right – I will manage with enough time and patience. Markus keeps telling me will adjust and things will improve. Thank you for the inspiration.

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  8. I’m glad you have good healthcare and people to help you. I spent about half my life getting severe bronchitis or pneumonia. I empathize with the “weight” and fatigue that are a result of not being able to get enough air. I hope you are feeling better soon!!

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    1. I imagine us in a room with a bed next to each other, complaining about our situation when we are able and laughing about it at the same time. We would be good friends as we recovered and see each other outside of the hospital. I never really met anyone in the hospital but by now are friends with my doctors and nurses. I enjoy having them over but this has become rarer since the pandemic. Maybe only twice since then? The lives of people who take care of us honestly.

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      1. We can’t laugh… it will make us cough!!!!

        I didn’t have routine docs to bond with. I was 36 when finally diagnosed with chronic bronchitis. I haven’t seen that doc in more than a decade but still love him (gay, SEXY, mutual name, FUNNY!!!).

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        1. Omg, you are also born premature? Me, too. Seven months-ish. You? I blame my lung issues on stress. My immunities zeroes when I am stressed and I am more sensitive to flares. This is the worst in a roll of good years. That is why I take it personally.

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          1. Yes, I was also 7 months. As an adult I’ve had many nurses tell me that’s wrong… that 4lbs is more than 7 months… but I looked it up last week and teh interwebs says that’s 32 weeks… 8 weeks early.
            I’m fortunate that nothing flared this year. I would have freaked out and assumed it was covid.
            My worst year was my 1st at 4yr college. I had 6 bouts of “walking” pneumonia. I later realized they occurred with major exams and finals. I hated that college and, thank gobs, had the sense to drop out and return to 2yr colleges.
            I hope you breathe well soon!!!

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            1. That sounds crazy. You just have to shake your head hearing flare stories. I also wear masks pre-covid, mostly to keep my allergies at bay. Covid in our town is mostly controlled and it is not really a problem. It is in the cities where numbers keep rising. How about there? Normal life?

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              1. Yeah.. mostly back to precovid here. All restrictions were lifted in mid June. Masks are still the norm in most non-food places but no longer by law. Vaccination rate in SoCal is very high but docs & vets are still running their offices like we’re in full panic. I’m worried about the Delta/Indian variants but no one’s really talking about it. My office reopens on the 19th. I’m expected to show up 1 day/wk but I don’t see any reason for the inconvenience.

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                1. Wow, that picture is inspiring but also terrifying. I hope people do not let their guard down too soon. Curious what that day at the office will bw like for you. I hope there is something interesting that happens to make your time worth it.

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                  1. It’s nice to see daily covid deaths in double digits instead of 5!! Long Beach had several days of no covid deaths at all. But violent crime, esp gunfire is WAY up. No one has any patience anymore.

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          2. Do you get flu shots? They changed my life. I went from being sick non-stop Sept to March, to catching colds like “normal” people. I still sound 1,000x worse than other people – but I don’t feel it.
            That’s why I already had face masks – bought 2yrs before the pandemic – they made others less freaked out by my coughing.

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      1. I am sorry to hear you have health struggles. Just try to take each day as it comes, and do the best you can one day at a time. I will be sure she saves tea to have with you. 🙂 Take care.

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  9. Thanks for the update on your condition. It sounds lousy but it also seems like you realize how serious this is and how to care for yourself. Rest, books, hot tea– and a doc who understands your problem. I’m sending good thoughts and healing vibes your way. Take care

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    1. Yes, many thanks, Mrs. Bean. It is frustrating but I try to see the good in it, learn the lessons offered, and enjoy what I can. It is strange how the world looks different when we are ill.

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    1. Positive vibes taken, Michelle. Thank you. I am trying my best, especially with being patient and not thinking too much. It is a wonder how my mind sometimes goes off even against my wishes.

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  10. Oh, dear Micah, I’m so sorry to read this today. You are in my thoughts and my prayers. I agree with what Sean has said about being positive and whilst he links you to Natalie Cole here is her father singing the same:
    https://youtu.be/xyHoohNyYkw
    You see, he is closer to my era! Haha!
    Physical activity will return and I pray that you can begin your yoga again. I’m currently learning Qi Gong and there are routines there that work on breathing. Perhaps, when you are feeling up to it you can explore more; there are plenty of Qi Gong videos on YouTube. The one that I like is Lee Holden but there are many others.
    For now, rest, good food, and fresh air will surely help. Bless you 💐💐💖🙋‍♂️
    I read something recently which said: EAT FOOD (not processed). NOT TOO MUCH. MOSTLY PLANTS. This was the way forward. Take care 💖

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    1. You made me smile, thank you for being wonderful. I am lucky to have lovely blog friends. I will follow your advice. Qi Gong seems interesting. Maybe I could learn it with my mother, good idea, thanks for sharing that. Will let you know when I am able to try it.

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    1. Thank you, Shelly. There are positives to the situation such as reading more, blogging, and being even slower. I try to be positive most of the time but not deny when I feel down, too.

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  11. Hi Micah, what’s happened to you? I felt the quietness of the blog for some time but I thought it’s because we’re all starting to be back to the real world… are you okay now?

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    1. Thank you, Janis. I appreciate you and our conversations help me relax. Like we are just two friends having a chat and everything else can wait. I started getting ill again in May and it was full blown by June and here we are dealing with it coming into the new month. I do not like falling into this hole because it is hard for me to recover. The medications annoy me and the side effects are a bummer. Now I am just in bed. No physical activity. I mean, just going to pee is a chore. But I try to deal with it as best as I can. I know the condition and I just have to be patient. Also I am lucky to have good healthcare available to me. My sisters are the best.

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      1. I am glad you’re surrounded by excellent healthcare professionals… I know that you’ve kept healthy and fit, however sometimes, we’ve got these flares that don’t really make sense especially @ this time when hospitalization is difficult. I hope you feel better and regain your strength soon… we’re all looking forward to reading your victory blog! Take care Micah… ❤

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  12. Micah, I am so sorry to hear your lung condition has escalated. I thought I might share this poem with you by the great Charlie Chaplin, I found on the blog My Good Time Stories:

    https://mygoodtimestories.com/2018/05/20/poems-to-make-you-smile/

    They also share a link to Natalie Cole who turned his poem into a song: https://youtu.be/e3xIYUbeR98 (Nostalgic Jukebox)

    😊 Smile 😊

    Smile though your heart is aching

    Smile even though it’s breaking

    When there are clouds in the sky, you’ll get by

    If you smile through your fear and sorrow

    Smile and maybe tomorrow

    You’ll see the sun come shining through for you.

    Light up your face with gladness

    Hide every trace of sadness

    Although a tear may be ever so near

    That’s the time you must keep on trying

    Smile, what’s the use of crying?

    You’ll find that life is still worthwhile

    If you just smile

    That’s the time you must keep on trying

    Smile, what’s the use of crying?

    You’ll find that life is still worthwhile

    If you just smile!

    Micah, you are very brave and I know it’s easy for me to say don’t be so hard on yourself. Remember all those really good things you have done to get where you are now with Markus in your tiny house, those wonderful plants and those delightful cats too, the turtles and all those other great things you have done. The sun will be shining tomorrow and we will see you then ☀️☀️☀️

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    1. Thank you, Sean. I feel like you literally visited me and brought me plants with flowers and nice things to help me get better, and I do feel better. You are the sweetest. Thank you for the encouragement. I allow myself moments to feel the sadness and frustration but no longer than necessary. I honestly thought twice about sharing this but why not we are all friends here. If it is any consolation, this has given me the chance to slow down even more, read a lot, and reflect on recent lessons and experiences. Being sick always puts me in a contemplative mood. Oh, and how are you going there? I heard some lockdowns in Aus?

      Liked by 1 person

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