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A work describing how it feels to be Asthmatic

My asthma is a minority.

It is not subtle. It is not that quiet cough little Jimmy gets in the corner of the classroom when he has a cold. My cough is LOUD. It is ferocious, painful, and disruptive. It is the sound that keeps people up and draws the eyes from everyone on my side of the ferry. It scares people away in a crowd better than a linebacker at full sprint, and it does not. have. mercy.It rears its head whenever I decide to make any physical exertion, even getting up to use the head at two in the morning – sorry mom! Again…Its asthma that's so distinct everyone knows it's you that is coughing even when they can’t see you. So loud and disruptive that you instinctively apologize to everyone around you every time you cough because it's become second nature. Asthma that makes your cheeks flare when one cough turns into two… three…. five… and your teacher has to wait for your coughing fit to be over.My asthma is not the kind that is simply tamed by a puff from an inhaler when it flares. Ohhhh no. This beast refuses to go quietly for it knows no boundaries. It is as stubborn as I am and at times I wonder whether it too inherited the Dutch, German, and Irish within me. It will just as soon interrupt your conversation, as it will smother that all important movie line from our favorite movie.

This is that Asthma, where your chest hurts more than your throat does from the coughing. And by the time you get better you swear that your involuntary crunches should have your abs looking like Daniel Craig or Chris Hemsworth.

This is the Asthma that is exacerbated by being overweight and yet confines you to inactivity and medications that increase your weight like some sort of twisted catch-22. ****** if you do, ****** if you don’t.

And people don't get how this… this… COUGH can be so… troublesome for someone. Surely I'm blowing it out of proportion and being a crybaby over a small cold, right?They don't understand that at times like I'm at right this minute – as I write this even – laying in bed is no peace for me. Only the ever elusive sleep can provide that much-needed respite from my own body. Even as I write this my head hurts from coughing and coughing and coughing. And the worst part? There's nothing anyone else can do for me. I'm on all the medications I can be put on for an asthma attack right now and are covered by my insurance. Controller inhalers, antihistamines, Abuertal, Levabuertal, Ipratropium Bromide, Budesonide, Prednisone, Methylprednisolone, all the ides and -ones. I have all but the most extreme medications they can prescribe me for asthma literally sitting in my medicine cabinet. I have tried most medications, and for those that work, I'm on that rare boundary of maximum dosages you can give to an adult for most of them to be effective and not have to worry about immediate health concerns.I've had to fight, beg, and plead doctors for the very same dosage of prednisone I've been on since I was FIVE as if I'm in there with a cough asking for oxycodone and Percocets. I can STILL recall the pharmacist's expression when I was age 5. He read the script, the dosage, and then saw how small I was and his look of disbelief is still memorable to this day.I get looks of disbelief and incredulity when I talk about my body to a doctor who hasn't treated me for a long period of time and insists I know what I'm talking about. No, I can't can I? I haven't had a doctor's degree. How could I possibly know anything about the disease my mom and I've been managing for the last twenty years?Somehow they don't get that wheezing for me means I'm on death's doorstep. That my lungs hold 112-120% of the expected lung volume for someone with my figures so that 94% 02 SATs are ACTUALLY pretty toll taking. Or that by the time my 02 SATs are to be concerning, it’s almost too late for me.

When they ask about peak flow meters, they don't understand that I maxed the adult version at the age of nine. That my asthma starts getting bad before their precious peak flow numbers start to show anything.They poopoo me and tell me to use my nebulizer – the same nebulizer and medicine I'm taking every 2 hours instead of every 4 like they say is the minimum I should be. I suffer the shakes, inability to sleep, and the gross feeling that albuterol gives me, just for the hope that maybe, just MAYBE, this time it'll ease the cough enough that I can catch my breath, eat my food, and not hurt for a little bit.This is that asthma that is so bad, you get turned away from studies or experimental procedures for being TOO asthmatic. So bad that when you tell someone you broke ribs twice from coughing the laugh at you till they realize you're not joking.This is same asthma that has me on three injections every two weeks since age 11 to keep my immune system from hospitalizing me when I have an allergy flare. The same MONSTER that has dogged my life for the past TWENTY years.

And yet, every time I got it under control my old insurance company would send me spiraling back into the pits of **** because I was "better now" and "didn't need" my injected medications. How many times have those lines turned into tragedy on the news again?They don’t understand the longer I sit here and cough the longer I suffer now, and the worse my future looks. For with every cough that comes out of me I risk permanent, irreversible, scarring that increases my risks of COPD.

That the longer I sit there on that exam bench and listen to the doctors debate about giving me a dosage of medication I and specific other doctors KNOW works, the greater the likelihood that I’ll be carting around oxygen when I retire. They don’t understand, that the longer I’m sick, the longer I suffer at the hands of this monster simply known as Asthma.

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  • K8sMom2002

    How eloquently and beautifully put, Brian … I think you'll find folks here who understand that there are folks with asthma whose numbers don't match up with their symptoms and their struggles.

    We're here for you.

  • Brian

    This came out of frustration yesterday, and I figured I'd find a place I could share it for others, lol. I find writing to be one of my favorite past times, so I figured I'd put it to work. Maybe give someone else the words to describe their asthma that they struggle to find.

  • Shea

    Thank you, Brian, for sharing your experiences with asthma and allergies. I find it much easier to deal with the diseases when people just take your word for how you are feeling and what you need when you know what works for you. We don't need people challenging us anymore than the disease already challenges us. There is something others can do for us, and that is being understanding and helping us follow our treatment plan by avoiding known triggers. They can help us by acknowledging asthma as the severe and debilitating disease that it is. They can help us by not just medicating us to cover up the inflammation and symptoms, but helping us identify and resolve the underlying causes of asthma like making a world with less pollution and less lung irritants and harmful chemicals. Asthma is not just our problem. It is all of our problems and a growing problem in the world. They can help us improve indoor air quality and lessen molds and pet dander and dust mites– keeping air cleaner not by bringing in more animals and more bleaching chemicals but by keeping it clear of animals and using green products that are not MSDS listed as lung and skin irritants. They can help us by  having guidelines on safe levels of molds in buildings and how to properly get rid of molds or tear down buildings that are full of them and rebuild. It is cheaper to do that than to pay for lifelong diseases like asthma for so many. They can make healthcare universal so that everyone knows that we will all pay for the health problems we or our business causes to others and not just have bad business practices that are cheaper and more harmful be the ones that get wealthy at everyone else's expense. I just want to breathe clean, fresh, allergen-free air into my lungs and eat foods that are not tainted with anything and just feel unafraid and at ease with the world and others around me again. Awareness and sharing experiences as you have is one way of getting others on board and for feeling less alone in dealing with this all. 

  • LK

    Welcome Brian!    

    You are very well spoken! 

    I have numbers that don't match how I am actually doing at all and my lung function numbers are over 100%, too.  My asthma cough is also so frequent that folks who know me can recognize it even when they don't see me nearby.  I cough so often I don't realize how often I do it.

    This community is wonderful and I know you will find the support and encouragement here that you need.   

  • Brenda Silvia-Torma

    Brian, Wow, your writing is very powerful and thought-provoking! Thank you for sharing your experience in such a creative way. 

    So glad you found the forums! We're here for you!

    Brenda 

  • Deborah Bartlett

    My iced coffee has been changed to iced coughy. I know how you feel. There are nights that I cough 3/4 of the way through the night. Yes, having asthma stinks. I also have COPD. Overlap Syndrome. Do I let it get me down? NOPE! I get through the day, every day with a positive attitude! I want to live my life to the fullest. Sure, I have had to make lifestyle changes. But I DO have a life and I am happy to be here!! 

    Take care of yourself the best you can! We all all here for you and anyone else that may need us!!! ☺

  • LK
    Deborah Bartlett posted:

     I get through the day, every day with a positive attitude! I want to live my life to the fullest. Sure, I have had to make lifestyle changes. But I DO have a life and I am happy to be here!! 

    Well said, Deborah!     Agreed!!  

  • Wheezy Me

    Brian, you phrased it beautifully! Thanks for sharing! And I'm sorry you're going through this.

    True, the numbers don't always indicate asthma activity or severity. That's why symptoms should always be taken into account.

    And just a thought- were you tested for other conditions that can cause or exacerbate cough, in addition to asthma? Upper airway (ENT doctors), GERD etc?

     

    Stay strong!

  • Brian
    Wheezy Me posted:

    Brian, you phrased it beautifully! Thanks for sharing! And I'm sorry you're going through this.

    True, the numbers don't always indicate asthma activity or severity. That's why symptoms should always be taken into account.

    And just a thought- were you tested for other conditions that can cause or exacerbate cough, in addition to asthma? Upper airway (ENT doctors), GERD etc?

     

    Stay strong!

    I have acid reflux which is known to flare me, so I'm on acid reducers for that (I like spicy food, so that was my concession lol.) 

    We were concerned it was primary ciliary dyskinesia, which is a condition where life expectancy is the main discussion instead of quality of life, and my biopsy came back showing no sign of that. I have anaphylaxis to all nuts, and we know most of my asthma allergies (enough of them thst my mom and I joke that I belong in my own hypoallergenic inflatable sphere.) Immunotherapy for the allergies has proven… mildly successful. It, coupled with living with cats my whole life, makes me basically no longer sensitive to them. 

    I'm on Xolair, and have been since I was 11, and almodt all of my house is hardwood floor or laminate and not carpet anymore. Relocation to a less… allergen prone or wildfire prevalent region was discussed but we dismissed that as being a real solution. Washington is kinda my home and I prefer it near the Ocean to anywhere else.

    So we're kinda like "What else is there to do?"

    I am going back to see the person who studied under the developer of Bronchial Thermoplasty, to try and have another shot at that treatment now that its been 5 more years and I have new insurance.. so I'm about out of options.

  • Marie E Natzke

    Brian

    Sorry to hear how bad it is for you. My asthma is different. I have problems with extreme heat,humid, bitterly cold temp. When I get a cold. When I come in contact with fur or feathers. My last asthma attack was when I was 50. 5 yrs ago. My attack happened out of the blue, and during the night… last one I  had was when I was about 3 yrs old.  I remember waking up and finding myself starting to sit up but not fully up and having a explosive coughing fit. I felt something pop in my neck and pain shoot down my arm. Didn't remember this until a few days later and then wondered off I just dreamed it as my arm and neck were ok. After 2 rounds of 50 mg of prednisone and when it wore off i found myself back in the ER in such extreme pain. I ruptured a disk in my neck. C5 to be exact. 23 months to the day of a previous cervical fusion for C6 and C7 they had to go back in and take out the plate that was in my neck and put in a new one along with a new fusion.

    all the meds you listed I didn't see codeine. Have you ever tried codeine for the cough? That is the only thing I that will work for me. Yes I know it can be addictive. but when it's the only thing that works i'd rather take that then anything else. It is also in a pill form and works just as well. Usually all I need is a few doses and I have it left over for the next time. Usually a bottle will last me 1 to 2 yrs. Most times I don't take the full dose I'll take half a dose of just one dose at night. 

  • K8sMom2002

    I'm very glad to hear it wasn't primary ciliary dyskinesia, Brian, but I definitely hear the frustration of "what else?" 

    It sounds like you guys have really worked hard to avoid your triggers … and I can understand why you wouldn't want to move. I believe most allergists now don't recommend moving to escape pollen allergies, as people tend to develop new allergies a few years after living in their new location. But the wildfire situation is probably very difficult for you.  What sort of air purifier do you use during those times?

    Sending good your way about your BT research … I'm hoping you hear some encouraging news on that front!

  • K8sMom2002
    Marie E Natzke posted:

    I remember waking up and finding myself starting to sit up but not fully up and having a explosive coughing fit. I felt something pop in my neck and pain shoot down my arm. Didn't remember this until a few days later and then wondered off I just dreamed it as my arm and neck were ok. After 2 rounds of 50 mg of prednisone and when it wore off i found myself back in the ER in such extreme pain. I ruptured a disk in my neck. C5 to be exact. . 

    Yikes! Marie, that was some kind of asthma attack! I hope you don't have one of those that bad ever again!

  • Shea

    I did move for avoidance– not states– but from an older rental home in Florida (which I think had mold and was not air tight at all either for outdoor allergens were always getting in and a/c out– so I had high bills too) into a brand new manufactured home (it was the only affordable new home I could get and I did not want a home with previous aninal owner due to my severe dander allergies)– I tell ya, I love my new manufactured home, and my allergic asthma is a lot better here than it has been in a long time. It is very air tight– so before I moved in as they were still working on it, I aired it out a lot so all the formeldyhyde and new hone smells had a chance to escape, and I put allergy-friendly houseplants in it to help clean the air too, then cleaned it with all green cleaning products and have no carpets in it. Since I moved in I keep it closed up (except for during really amazing weather and even then not during peak allergy times) and then I have the allergy a/c filters, MOSO bamboo purifying bags, houseplants, and HEPA air purifiers to keep the air inside clean.

    I am not sure if living on a newer airtight home would be a good approach to keep wild fire smoke and outdoorsl allergens out in Washington, or if it would be a feasible option, but this house has way less leakage than most sight-built homes, so Id think itd be good to keep smoke/allergens out and for the stuff that gets in if you have purifiers it will clear it out quickly. 

    I also live in an area further from the coast, than before, so I don't have to worry about flooding or red tide triggers (or hurricane storm surges abd evacs) that come from living along the coast, but I am close enough to visit the ocean when I want to.

    I am definitely a believer in having a sanctuary home with as few triggers as possible– It is something I can control that helps my asthma and allergies (and since I soend most my time here–especially when flared up, it helps me recover quicker and stay better longer.