What I wish people knew about asthma....
I saw a story on abc NEWS about Kyle Schwartz, who is an elementary teacher at Doull Elementary school in Denver. She wanted to get to know her students better, so she had an assignment for them. They had to finish the sentence,
"I wish my teacher knew ____________"
She was surprised at the what the kids wrote. Things such as:
"I wish my teacher knew that I don't have any pencils at home to do my homework"
"I wish my teacher knew that my reading log is not signed because my mom is not around a lot."
She started a hash tag #IWISHMYTEACHERKNEW If you watch the video in the link above, make sure you have some tissues handy, it tugs at your heart strings!
Her idea went viral, there were so many people who LOVED what she was doing! Others have copied her idea.
It made me think - what do I want people to know about asthma?
Everyone with asthma has a different story to tell. So, tell me yours! My sentence has a little different wording than the one Kyle Schwartz started, but is the same idea.
Leave a comment below and let me know:
"What I wish people knew about asthma....."
I wish people stop to tell me, that I will infect them, when I cough. Sometimes it is real infection (but, what is the most interesting, I rarely catch "normal" flu or cold, most of my infection are typical for asthmatics, as my internist said), but not always. But even if I catch some "typical only for asthmatics" infection, I see that nobody in my environment catch it from me.
ReplyDeleteI wish people stop giving me stupid advices about my disease. I know that some of them have good intentions, but we in Poland have also proverb: "Streets in the hell are made from good intentions".
I wish You nice week.
I understand!
DeleteWhen I catch a cold, I have a cough that will last for about a month. I am over the the "cold" part of the illness, but the cough lingers until I can finally get the swelling down in my lungs.
And I also get a LOT of advice from people "have you tried this? or this?"
I know they mean well, but since I have asthma all my life, I know how to control it.
That you could die from it. If you don't take care of yourself and stay away from your triggers. Asthma will not go away. It is always there. Although, you are having a good day or a bad one.
ReplyDeleteYes, many people don't realize that asthma can be deadly.
DeleteDeath can be rare - but it does happen. There are 9-11 deaths in the U.S. every day from asthma.
http://www.aafa.org/display.cfm?id=8&sub=42
That a little cold is not just a little cold when my asthmatic son catches it. So please stop assuming everyone is fine with your sick kid being at school/church/play group.
ReplyDeleteBethany, You are right with kids, but here we have plenty of sick adult people in job! They can't go to free day because most of our employees cut them money. Or they try to play "heroes": "You see, I have cold and I came to job".
DeleteI don't know what does it look in the Western countries, but in Poland we need serious corrects in our job places.
Bethany, I had to deal with this repeatedly when my kids were little.
DeleteI would say, "For you it's a cold - for my child it means pneumonia and a 3 day hospitalization.
If the parents sent their kids over to play and someone was sniffing their nose, or coughing, I sent them home.
Sorry - unless they have watched their own child struggle to breath, they will NEVER understand.
My job is to protect my kids, and I will do just that.
I also am a maniac about washing my hands, since many people still come to work when they are sick.
One co-worker came to work with a FEVER! I ended up with pneumonia and missed a week of work.
Sorry you are having to go through this experience with your son :(
I know how frustrating it can be!
I have CF, but it often mimics asthma. I wish people didn't assume that once you have puffed your inhaler, the cough magically goes away like it does on TV. Also that perfume can cause asthma attacks. In church, there was this one girl who wore so much perfume that I was still wheezing profusely sitting far across the room from her, I could smell it too. After having to leave church 5 times due to attacks from her perfume I had to kindly ask her that she not wear so much perfume. I haven't had an issue with her since and we have actually become good friends.
ReplyDeleteAgreed! My cough doesn't magically stop once I use my inhaler. Even my sweet hubby mentioned something, and I said, "Honey, it takes a LONG time to get the swelling down in my lungs and to get the mucus cleaned out. It takes me about a day to recover from an asthma attack.
DeleteMy chest is still tight the next day :(
My asthmatic is also an athlete. He loves to play football, basketball, and baseball.
ReplyDeleteWhat I wish is that coaches would understand that a cold can knock him out of commission sometimes, but his passion and motivation NEVER goes away.
I even heard a coach recently say "Hey stay away from him, he might get the sniffles and miss playoffs." Grrrrrr.
He fights his condition everyday with tons of preventative meds including xolaire infusions. But still is "punished" because he gets sick. I can talk myself purple to some coaches and they just don't seem to get it.
I understand that all too well!
DeleteMy son was on Xolair injections for 7 years - it was the only thing that would keep him out of the hospital.
The PE teacher had my son pegged as the "lazy fat kid". Yeah, well if you are in the hospital repeatedly getting steroid IV's, you are going to puff up.
And if he can't breathe, he certainly won't be out running the mile!
There is a program available for coaches called "Winning with asthma: Coaches Clipboard"
http://www.winningwithasthma.org/
It's a FREE 30 minute online training about how coaches can SUPPORT athletes with asthma. We want these kids to be active, but they need a longer warm up/cool down and other precautions.
And yes, a cold can often mean pneumonia for someone with asthma.
The problem is that the coach will NEVER "get it" unless he has a son or daughter struggling to breathe. Once you see that, it changes your life.
He will never understand inhalers, nebulizers, mad dashes to the emergency department and oximeters.
Does your son have good friends that support him? I hope he won't be at that school for long - it can really crush an athlete's desire to compete.
How is the school nurse? Can she go to battle for your son?
We teach asthma education classes, and at the beginning, we have the staff run in place for 30 seconds, then plug their nose and breathe through a short straw.
Then I explain that that is what it feels like to have asthma - only I can't "take my straw out of my mouth' and breathe normally.
I talk to them about the physical problem of not being able to breathe, but also how it affects you mentally. I STILL panic when I have an asthma attack - it's scary.
I'm so sorry you can't get support from the coaches :(
You could contact your local American Lung Association or health department and see if they can help.
Many states offer an Asthma 101 training to school staff to help them understand what it's like for students with asthma.
Good luck!!
I wish people knew just how much hard work it is to do the normal day to day things for someone with severe asthma. How irs always there xx
ReplyDeleteYes, some days it's really difficult. Especially after an asthma attack - my chest can be tight for a couple of days :(
DeleteAnd I am tired and cranky.
It's amazing what it does to your body!
Hi Andrea,
ReplyDeleteThanks for sharing some of your story and the challenges that you face living with asthma and allergies. It is great to see such a supportive community on your blog!
My name is Abby Cohen and I am the co-founder of a startup called Sparo Labs and we are developing Wing - a pocket sized sensor and app that measures lung function (specifically peak flow and FEV1).
We are currently going through the FDA clearance process and just launched an Indiegogo Campaign to spread awareness about the impact of asthma and give people with asthma the opportunity to get Wing first.
I would love to get your feedback on Wing and also wanted to see if you think your readers might be interested in learning more about it!
Would love for you to check out our campaign page for more info: https://www.indiegogo.com/projects/wing-measure-your-lungs-manage-your-asthma/x/12501491#/story
Feel free to reach out to me via email at abby@sparolabs.com. I would love to talk!
Thank you!
Abby Cohen