Navigation

What would you tell your…

initally diagnosed asthma self after all that you know now?

31
176

Comments 31

  • Melissa G

    I would want more information. I was diagnosed as a teen and really struggled with keeping up my physical activities. I didn't know about pre-treating and got winded so easily. It made my senior year of high school hard. 

  • Brenda Silvia-Torma

    First thought that comes to mind is a hindsight response: "Don't do the obstacle course in June 2018 bc it triggered bronchitis which led to a change in asthma diagnosis!"

  • Melissa G

    Yeah, that would be some great info to have had! But it taught you a lesson and you have learned from it Brenda! 

  • LK

    That's a great question!  

    1.  Find others with a severe asthma diagnosis to know what I was up against,  for support and to share concerns and encouragement.  And to give me perspective on how it affects your entire life and how exhausting it is to live with asthma.
    2.  Have a list of questions for the doctors.  
    3.  Realize that I may not be able to keep doing everything I was doing before.
    4.  How important it is to truly AVOID triggers.
    5.   AAFA!!!  
  • Brenda Silvia-Torma

    Love your answers Lisa!! Ok, my real answer is:

    • Not be afraid to use the albuterol when I think I need it…(in other words, don't wait to use it–it can't get to where it needs to go if the passageways are closed off!)
    • Number 3 from Lisa's list–realize that I may not be able to keep doing everything I was before.
    • Keep exercising, even if it's a little each day–it gives me happy endorphins and keeps my stress level down.
    • Be vigilant about the air quality–even if it's in the yellow (moderate–okay for  most everyone) bc I'm really sensitive right now. 
    • Don't forget how it feels to be able to take a deep breath. (ie. lobster in a slowly boiling pot). You get so used to feeling bad that your sense of feeling well is altered. Before you realize it, you are in over your head.
  • Pljohns

    Melissa-what a great topic!

    I would make sure to get some exercise daily-you quit and it's HARD to get back

    You have to change some things you do and not do things you really want to 

    You have to advocate for yourself with everyone-employers, family, friends-to make them understand you can't do everything anymore and you need some help too

    Find a support structure (like this AMAZING AAFA forum)-support is so important!

  • Melissa G

    You all have have some great thoughts!

    Another one would be that seasonal/environmental allergies can make asthma worse! I had no idea about this for a long time. 

  • LK

    Good one, Melissa!

    Thought of a few more - 

    • Your asthma will change over time, which includes that it may get worse at times.
    • Just because the meds you are on now help, doesn't meant that they will not always help.
    • You may have to try several meds to find one that does work for you so don't get discouraged when you feel like "a stick in the mud".  (As I was typing "a stick in the mud" it occurred to me that also applies to the feeling of not having enough air to breathe and move.       
  • Amber Says Shine

    All these are great. I especially resonate with Brenda's note above re: remembering what it's like to take a deep breath. That would have helped me so many times on my asthma journey! It's so true that you just get so used to feeling bad that you forget more/better is available. I also would tell my younger self to not be so stubborn… In my 20s, I wouldn't always take meds as prescribed (Serevent back then). I love that I have tried lots of lifestyle changes and complementary healing modalities, but I haven't always given Western meds a high enough value.

  • Pljohns

    These are such good things-you know what they say “hindsight is 20/20” but this is a journey that we all take different paths on and all would have done some things a little differently if we knew then what we know now.  BUT we have all found this wonderful support group that is amazing and that is something I don’t have to look back later and wish I found.

  • Melissa G

    I thought of another one, you should use a spacer with the inhaler! Once I started using a spacer, I got more medicine in my lungs and not on the roof of my mouth and began feeling better. 

  • Pljohns

    I thought of anothertoo-in light of my recent stupid with my inhaler running out and I didn’t notice it-I would say set up a system that works for YOU to keep track of your meds

  • Melissa G

    We need med reminders for stuff here too! Neil is notorious for letting me know he just took his last pill and it a prescription that is a mail order refill.. Sometimes it can take up to a week for it to come in. 

  • K8sMom2002

    I love this topic! And I love all these great answers!

    I think the number one thing I would have told myself was, "Asthma is for life — take your inhaler with you wherever you go." 

    And another — "keep a symptom journal, so you can figure out your triggers. Not everyone is the same, and you figure out what triggers your asthma."

    Melissa, about mail order meds running out! Can you figure out how many days of meds he has in each prescription and put a reminder on your phone to order?

  • Marie E Natzke

    Now my Drs realize how allergic I am to animals . He couldn't get over how different I looked 6 weeks after I quit my job. If I could go back 5 years and handled the whole situation differently maybe the outcome would have been different?? I doubt it though. 

  • K8sMom2002

    Marie, how frustrating that you had to endure all that. It's amazing what removing triggers will do for asthma. 

    How would you handle it now? What lessons did you learn from that experience? 

  • Marie E Natzke

    Lessons I learned? I don't trust as easily as I did especially employers.. no matter how well or long you know them. Get better Drs note and document any problems regarding allergies being aggravated in the workplace. if an agreement is made get it in writing from them. Maybe go to the news media? 

  • Melissa G

    I thought of another one…it is ok to get frustrated about being dx with asthma, just can't "stay there". 

  • LK

    Now that is a good one, Melissa!      Especially the "stay there" part.

  • Melissa G

    Whether you think you need them or not, take your meds with you when you go out! And when you travel, if you have a neb take it with you. 

  • K8sMom2002

    Another lesson I wish I had learned earlier — understand your insurance and how your asthma affects it, and it affects your asthma. 

    Formularies (the list of drugs that are approved on your insurance) can change at any point in the year, and that was pretty surprising to me when I first discovered that some years ago.

    AAFA has a great resource called . It has a terrific video.