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If I could do it all over again, advice to yourself

Hi all, I’m still working through the last few months of struggle and learning to cope with this increase in asthma severity. This got me thinking about what I would go back and tell myself weeks or months ago. I’ll put my own thoughts below, but was wondering, if you could go back and tell yourself words of wisdom or advice for dealing with asthma and chronic disease and life, what would you say? 

– ask for a referral to pulmonology early. Referrals can take months and seeing an expert can stop a spiral early and get you the expert care you need.

– don’t be ashamed or embarrassed about your illness. Don’t apologize to anyone for needing time off to care for yourself. There’s nothing you did to deserve this, nor is it a time to self blame for your illness spiraling out of control. 

– exercise your right to fmla leave and talk with your doctor openly about a reasonable time frame both for treatment and recovery. You aren’t helping anyone by coming back too early and reinjuring yourself. 

– dealing with severe asthma and illness can be overwhelming for others. Expect to lose touch with some friends but grow closer to others. 

– be patient with yourself. You will go through major ups and downs both mentally and physically as you learn to tune into your body, adjust to treatments and begin the recovery process. Blue days are ok. When they happen, reach out to family, friends or the forum community. 

– communication is key. Your team of doctors can’t help you if you don’t let them know what is and isn’t working. Ask questions, report side effects; but don’t stay silent. 

– keep a diary of symptoms and triggers And questions. There is literally too much to keep in your head. It will amaze you the insights that you can find when you look closely at trends (ie symptoms worse at night, after eating, menses). 

– be organized and aggressive about medication management. Set alarms, use pill boxes. 

– educate yourself as much as you can. Take the online asthma care and severe asthma care classes. It will help you communicate with your team, but more importantly, put you in charge of your care.

– remember it will get better. Whatever pain, discomfort or fear you have, keep walking. Better days are coming. Cling to hope. Remember, you are more than a disease. You may have asthma, but it doesn’t define you. 

– make yourself priority #1. When you are seriously ill, it is not selfishness to pull back and focus all of your energy on doing what it takes to get better (eating, sleeping, resting, avoiding stress, prioritizing medical appointments, pulling back on commitments, etc). 

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  • Emelina

    – serious illness such as severe asthma is stressful on many fronts. The emotions you feel aren’t abnormal. Expect to feel them all and cycle through them (denial, anger, bargaining, acceptance, etc). I felt like I was going crazy and was all alone. Then I started reading studies done on people with severe asthma and chronic serious illness. It made me realize I wasn’t alone in this swirl of emotions and struggle to make sense of what I was experiencing. Here’s an excerpt from the commonwealth fund’s study on the experience of those with serious illness.

  • K8sMom2002

    This is wonderful! Love your thoughts, ideas and suggestions!

    Let's see, the one thing that asthma has taught me to do differently going forward …

    When a doctor gives me a diagnosis, I see it as a signal to stop and ask detailed questions. Before when a doctor rattled off a term that I was sort of familiar with, I would take my cues from the doctor's reaction. If he were matter-of-fact, I'd think, "Oh, okay, must be no big deal."

    That happened with asthma for me. When I was first diagnosed, the doctor who diagnosed me was extremely matter-of-fact and very much, "Oh, we can fix this with a breathing treatment and here's a prescription for your inhaler and call me if you have any questions, next patient please."

    I am embarrassed to admit what I didn't know about asthma — I didn't know about triggers. I didn't know to carry my inhaler with me all the time. I didn't know when to use my inhaler or that I needed an . I hadn't even heard of an asthma action plan before.

    But I learned! And that experience has taught me that when a doctor gives me or a family member a diagnosis of any sort, I need to stop and say, "Whoa! I have questions right now. Can we talk about this? How do I manage it? What's a trusted source of information about this?"

    The good thing about asthma: it has taught me how to advocate for myself!

  • Shea

    Don't underestimate pet allergies. Don't live with a pet you are allergic to.

    Don't trust a medication that clears symptoms is actually stopping a disease.

    Always get copies of labs and look at high levels and research them because not all doctors will inform you, or research, or warn you of side effects caused by your medicines. Many don't remember you at all. 

    Work at a job that values its employees and provides benefits such as time off, sick days, does not overwork people, and has good coverage.

     

  • Deborah Bartlett

    If a new doctor doesn't seem like he or she is caring, attentive or professional enough ..use that as a warning signal. Seeing a PA or nurse is not the same as seeing your specialist!! You do need to see your doctor in many cases. 

    Think all situations through before jumping into anything!!!! No offense…but if I had never moved in with my DH years ago, I would not have COPD or asthma!!! I should have sought out a live-in job before I had to leave my home. Hmmmm…too late now! Don't be too hasty in your final decisions!!!!

  • Richard

    What I would do over again is a tough one.  I would have chosen a different career.  I'm 64 so the choice is past me.  I have been a chef my entire working life.  No decent insurance, if there was any.  Extraordinary guilt if I missed any time, which I didn't.  The show must go on in this business.  If I missed time, someone else had to do double work, which bred resentment.  

    What stopped me from changing careers was my exceptional talent, which ended up being sort of a curse.  Often my symptoms were bad enough I wouldn't talk.  Which was misconstrued as not being receptive.

    My business is in itself a trigger.  Odd hours, long hours, on your feet, stress from being so busy, heat, smells, heavy lifting, competitiveness, filling in for others, etc.

    By the end of the week I was a basket case.  But had to put up a front.

    To be a really well paid chef you must work at least a 65 hr. work week.  I put my foot down and said 40 hours is it.  Ownership would determine I didn't have what it takes. I was limited.

    So what's my suggestion if your a bad asthmatic?  This is a tough one.  By 25 years old pick a career that doesn't trigger you and make you crazy.  One of the hard parts of this is at 20-25 you have no idea what the heck your doing!

     

  • Emelina

    Thank you Cynthia, Shea, Debbie and Richard. I love the advice and your thoughts! So true about advocating for yourself and asking questions, keeping tabs on your labs/symptoms and med side effects and picking your career and living situation carefully. 

    Here’s something I found on the asthma Canada site. At a minimum, these are basic things all people with severe asthma should expect. Though we can’t all be weaned off oral steroids, at least biologics should be discussed. It’s amazing how many severe asthmatics don’t know these drugs are out there or stay under the care of a generalist. I love my pulmo team.

  • LK

    What great information and ideas!!  

    Some of my thoughts have already been mentioned above but, my advice to myself at the beginning would be - 

    • Learn more about asthma.  I didn't know hardly anything about asthma such as that there are different levels of asthma nor where to go for support and reputable information, triggers – what they are and how to avoid them, among other things.
    • Ask more questions of my pulmo and PCP.  For example – when I should notice an improvement, what sort of improvement should I see, etc.
    • Don't keep pushing yourself when you are having a flare.  As odd as it sounds, I really didn't even know what a flare/exacerbation was.  All I knew was I couldn't breathe.
    • AVOID TRIGGERS 

     

  • Shea

    I wish asthma and allergic diseases were more forgiving and that we could just do it all over again… Just have the heath and vitality back and get another chance.

    Some days/weeks/ time of year I feel a little better, and try to lower on a med and BAM get hit again by something. It doesn't seem fair.

    So many beautiful people on here trying to live up to the demands and its like… used, abused, thrown out… Is the theme– in jobs and relationships ( for me at least). 

    It is what capitalism with no universal healthcare run on…. A lack of accountability (I swear if we knew we had to pay for eachothers healthcare we would start getting more accountable and holding others to it as well). And, not just by eliminating harmful products/industries, but also by improving treatment at work. People wouldnt just be able to use and dump people without consequences, hiding in an engine of disgusting profitability, and leaving the person to die or on little government benefits where they can be further demoralized and dehumanized while rich people pay less and take more. 

    If it isn't pyramids built on the slaves back or plantations built on slaves backs, or industries built on the irish or immigrants  (who worked jobs people wouldnt want their slaves who were "property"/ "investments" to work at the time so was in some ways worse than slavery).. And now it is workers being pushed to their limit and breaking and being replaced and another the same– often with not enough to support one person much less a family… And in my personal experience and age group there are so many men that have stolen from women and their own kids– in my personal group of female friends who worked and were single parents it was the norm… Along with drug and alcohol abuse rampant and those indusrties taking from so many… It surely isn't life, liberty, and the pursuit of happiness for the majority of Americans right now.

    I feel blessed to have been broken bad enough to get some social security benefits (my son and I could have been worse off) and fearful also because the benefits could be taken away. I realized I was lucky to hit a point close to death without dying, and getting medical tracking of it, and being able to fight my case, and get legal rep and family support, because I just wouldn't have made it this long if I hadn't– to age 34. But I wouldve rather been lucky and had good attentive doctors, I would have rather gotten lucky and had a great father for my son/marriage, I would have rather been lucky and had supportive employers, been lucky and had  a system that supported long-term health, and a country I was proud to live in, on a planet that was thriving, in which everyone had great important humanitarian careers they were proud of and capable to perform, with upward mobility, and equality, and a social system that allowed every human to grow up, live, and die with food and education and health and family and prosperity and happiness and clean air… Valued and cared for and prioritized over all the nonsense that entraps us. I guess if I could do it all over again I would have been born in that lucky paradise. 

  • Deborah Bartlett

    Shea~~~I know how you feel. I've been dumped on, dumped out, defamed of character, and cussed on. But– I keep on going! I wish that none of us had to have our health issues. At least we have each other. 100% understanding. That is priceless! Have a wonderful weekend! ☺❤

  • Shea

    Thanks Debbie! I always liked the saying "No one can make you feel inferior without your consent", and I totally think you have that essence–you always keep your head high and walk proud and strong, knowing what to say and do to stand up for yourself. I learn alot from you and it has helped make me stronger too!

  • Emelina

    Debbie, right we have each other. Bundled together I think we’re a pretty formidable group! 

    Shea, your words were beautiful and troubling in the same breath. Health, vitality and a second chance or a new deck of cards; that would be amazing. That’s why I always scratch my head and wonder why healthcare isn’t universal and accessible and affordable. We can’t give out second chances or print new organs, but we do have healthcare which can try to mend the person to the point that we all share some basic level of health. But in this broken system that can’t even be guaranteed. 

    It makes me sad that you had to come so close to death and endure so much to Qualify for benefits and support. I too wish I could have been born in that lucky paradise. 

  • Deborah Bartlett

    Thanks Shea! ❤❤❤

    You always know what to do. You are a good Mom plus you know how to take care of yourself. They go hand in hand. You always inspire me! 

    Keep on going! When you know you are doing the right thing, that's what counts. Walk tall and step over those landmines! 💪😊