My Life as an Asthma Mom

  One thing that always bothered me over the years with our family of 5 is where to stay for the holidays. We would usually travel hours to see a family member, who insisted that EVERYONE stay at her house. No matter that there wasn't enough room.... She would tell me that my kids could sleep on the couch, or buy an air mattress and sleep on the floor.  How is that a fun thing for the holidays? I will have kids that are sleep deprived and cranky from trying not to roll off the couch.   And 5 of us are fighting to use the one guest bathroom.  Was that a status thing for families? It was some sort of badge of honor to have children and grandchildren all under one roof? As many as you could squeeze in? One time, Family Member wanted 4 families (and their kids) to all stay at her house.  While Family Member had the luxury of a large master bedroom, complete with a walk in closet and full sized bathroom with a jetted tub.......all to herself?  Yet we were s...

 Our family has always been VERY cautious around other sick people. With a family of 5 (4 of whom have asthma), we have a habit of getting very sick - very fast. In fact, my kids were in the hospital 12 times when they were young (two of those were ICU stays.) Needless to say, we are all germaphobes. And we were germaphobes long before COVID reared its ugly head.  Since covid started, we have avoided church, family parties, receptions, weddings, and baby showers. In fact, we had friends that were supposed to come over for Thanksgiving dinner. But, the daughter was sick and coughing.  The parents said she would wear a mask  - but I knew she would have to take it off to eat. I would have to watch her like a hawk and as soon as she took her last bite of food, I would have to tell her to put her mask back on.  Either way, it would expose my family to her respiratory illness. She didn't have asthma, but she was coughing. I could just imagine how bad our cough would b...

  It’s that time of year again, the holidays! There are so many allergy & asthma triggers that can make our family miserable. We are a family of 5 – all 5 have allergies, 4 have asthma, and 2 have food allergies. So we try to be careful year round – but there are more challenges during the holidays. Christmas trees I see so many commercials or holiday ads with people driving their car with a Christmas tree strapped to the top. That must be nice I mutter to myself as they drive by. We are all allergic to live Christmas trees, so we have an artificial tree. I know it’s not the same as the smell of a freshly cut tree, but we can’t have one in our house. Instead, we have a fairly good looking artificial tree that is scent free. So that works for us. Stress and strong emotions Stress is another asthma trigger that gets to me at the holidays. This year, we have decided to take a trip instead of buying sweaters and socks of other ‘stuff’.   My kids are all adults...

  I've been watching the news and every channel has been having stories about RSV. But, each channel is saying that RSV is only dangerous to babies and older people.  I'm yelling at my TV It's not just for babies! When my son was only 5 years old, he was hospitalized with RSV Yes, 5.  It's so important that people know that older kids can get RSV and end up in the hospital!  My son is an adult now, but years ago, he was sick all the time. All the time.  He has severe asthma, and would always get sicker than my other kids. And he would be sick for a lot longer than my other kids.  One time, Son #2 looked terrible and I knew it was time for a trip to the ER.  I remember the doctors in the ER saying hmmm....what could it be? I guess we should test your son for RSV, but I've never heard of a kid that age ending up in the hospital with RSV.   Silly doctor. He hasn't met our family yet!  We are always the 1%   CDC says RSV can look l...

    I'm a little late in posting about sending kids to college, but you know how it goes.... work projects take priority. I only have one kid left in college, but I still worry about all of my adult kids! My mom always said,   "Once you're a mom, you're a mom for the rest of your life." I have to laugh when young moms say 'it must be nice to not have to worry about your kids anymore.' Amateurs I didn't stop being a mom when my kids turn 18. Maybe some parents are like that - 'good luck with the rest of your life!' I will always worry about my adult kids especially because they have chronic health problems like allergies, food allergies, and asthma.  But I tried to teach them life skills so they could be independent. They REALLY hated that when they were younger, but I told them they would thank me later When it came time to for each of them to go to college, they could do the basics: Do their laundry Balance their bank accounts Maintain their c...

       I was in a cooking class this week with a group of friends. We were listening to the chef tell us about his experience cooking for other people (including famous people and several US presidents!)  We were chatting about food allergies and he said:  “I hate it when people come here with food allergies.” For once in my life, I had a snappy come back! (Don't you hate it when you think of something the next day that you "should have said"?) I quickly replied:    “ Well, I hate trying to find a safe place to eat!”  That didn’t seem to phase him, so I said  “Did you know that from ingestion to death, it can be as little as 30 minutes?!”   (Graphic from Allergy & Asthma Network ) He seemed surprised to hear that My cooking group went on to tell him that he really needed to have a epinephrine auto injectors in his cooking school  - just in case  He said that that "No. I don't have to do that. The people coming to ...

  As I round the corner at the store, I am surprised to see aisles filled with school supplies.  Is it that time already?! My kids are too old to worry about Back to School time.  But when they were little....it was VERY important to me.  In fact - I would try to be the first parent at Back To School Night so I could sign up as Room Parent.  Was I in to planning class parties? Field trips? Decorating the teacher's door for Teacher Appreciation Week?  Not really... As a mom to three kids with asthma, I was always worried. Their asthma was hard to control, even Asthma Specialist was puzzled. My two youngest kids ended up in the hospital 12 times (2 ICU's) So I was always on edge. I couldn't just send them off to school each day and relax.  I wouldn't go too far from home. I would try to run quick errands, but would sometimes get calls from the school that one of my kids was having an attack. I would have to leave my grocery store in the middle of the ais...

  Don't you hate it when you get sick, and people say, "Are you STILL sick?!"  My friends with asthma won't ever say that....they know better! They know that when we get sick, it lasts about a month.  It's people who DON'T have asthma who can't figure why we are still sick. Normal People (no asthma) when they are sick Those without asthma are usually sick for a day or two - a week at the most. They are annoyed thanks to a stuffy or runny nose, and sneezing. And they might use a little sleep here and there. Then they're back at school or work and carrying on with normal life. People with asthma when they are sick  While our friends or family members have recovered, our misery is just starting. At the one week mark, most of us with asthma are still Best Friends with our nebulizer, and we're doing breathing treatments every 4 hour around the clock. Hello 2am Breathing Buddy! And we're coughing so hard we are about to pull a muscle in our rib cage...

  I am one of those people who can never have enough plants.  I go to the grocery store with my list.....but always swing by the plant section. You know - just in case they have a plant I don't have yet 😉 So when I was in DC for work, I just had to stop by the US Botanical Garden . I was planning on spending hours in there. I felt like a kid in a candy store!  I entered the main floor, and could feel my stress melt away. My job is very stressful (chronically) so I needed a little recharge for my soul.  It was humid inside, but not too bad. It's what I expected from a giant sized greenhouse. The tropical plants and meandering stream reminded me of Hawaii. I was a little worried about the heat and humidity, but my lungs seemed to be okay.  Did you know that heat and humidity can trigger an asthma attack?    Sigh.  I noticed a 2nd floor in the greenhouse and couldn't resist a stroll through the tree tops. As I stepped off the elevator, I could feel...

 I'm a little slow in posting this, but May is Allergy & Asthma Awareness Month!  My family had the privilege of attending Allergy & Asthma Day on Capitol Hill, in Washington DC, sponsored by Allergy & Asthma Network.    Did you know that your representatives aren't experts in all areas of life? They rely on hearing from their constituents. Most of the aides we spoke to didn't know anything about allergies or asthma, and how our lives can be impacted by it.  So I share stats about allergies and asthma, and my family shares stories about when they were in the hospital for asthma (12 times) and how scary it can be. We are hoping that sharing our story and those of others will help our reps understand what the allergy and asthma community needs.   I know that I am in a position where I can advocate for those of you who couldn't attend in person. But - good news! You can use social media and tag your reps! (It's not as scary as it sounds!) Allergy ...

     Isn't it crazy that we are still using the same delivery device for epinephrine? Auto injectors. Can't they develop a new way for us to get epinephrine? There are two options in the works. One is an oral film, and one is a nose spray. Oral Film  The oral film just received "Fast Track" designation from the FDA.   A press release says : "U.S. Food and Drug Administration (FDA) has granted Fast Track designation to AQST-109, the first and only orally delivered epinephrine-based product candidate for the emergency treatment of allergic reactions, including anaphylaxis." The film will be about the size of a postage stamp and will go under the tongue. It will dissolve immediately (no water needed, and it doesn't need to be swallowed.) How cool is that? I don't know about you, but carrying a twin pack of auto-injectors is a pain. I have to carry a large purse for my auto-injectors, inhaler and spacer, plus the assorted mom things (gum, bandaids, t...

  I was just chatting with a group of writers, and we were talking about "gross topics."  Should we write about them or not? Well, if it can help someone feel like they're not alone - why not?! One of those gross topics I brought up is allergies. For those of you with allergies, you may know what I'm talking about.  Mucus (aka Snot)  We all make mucus (and some of us make more than others.....)  And you may make more mucus during certain times of the year.  Spring is always fun for a lot of people. I was recently at a work conference near one of the beautiful national parks. My husband and adult son tagged along so they could go hiking and exploring.  The morning after my conference, we were in the hotel room getting ready for breakfast. My son asked if I was okay? I was a little confused, but then my husband said, "She's fine. She sounds like this all the time." I had blown my nose 4 times before breakfast, and still had a lot of congestion. But I did...

      I was listening to The Today Show while I was getting ready for work. I stopped in my tracks when I heard them talking about Medical Gaslighting.  That was a new term, so I had to listen to see what they were talking about. I have heard of gaslighting before, but not MEDICAL gaslighting. Psychology Today says gaslighting is a form of manipulation and psychological control. Victims are deliberately given false information that leads them to question what they know about themselves. They may end up doubting their memory, perception, and sanity.  The Today Show segment focused on how women are not believed when they go to their doctor. Some doctors may not listen to the patient - and instead just chalk up the symptoms to a woman being depressed, anxious, or just fat. New flash - you can be overweight and STILL have medical problems.... One woman was overweight and her doctor repeatedly dismissed her complaints of stomach and back pain. She went through thi...

  As I look back over the last 22 years (when our asthma journey began) all I can think is WOW. How did I make it through all those years?? My introduction to being an asthma mom was having my then 5 year old admitted to the hospital....and then finding out he had asthma. What?! Trying to learn the asthma lingo (what's a controller inhaler, reliever inhaler, spacer, nebulizer and a breathing treatment?!) Trying to make my home allergy & asthma friendly. See ya carpet! Trying to find the right doctor (Asthma Doc definitely managed their asthma differently than the pediatrician!) Hovering to make sure my kids took their controller inhaler every morning and every night   Calling dibs as room parent so I could see what was going on in my kid's classrooms. (Looking for class pets, stinky art projects, or anything else that could set off their asthma.) Volunteering to go on field trips (yeah.....they're not going to the zoo or state fair without me. I KNOW my son or daughte...

  Is it OK to ask my doctor for a different inhaler?  Well....the short answer is yes.  Don't like your inhaler? Want to try a different kind? It's perfectly OK to ask your doctor about that! Some organizations are trying to encourage doctors to slow down and listen to patients preferences. And part of that is deciding WITH your doctor what is best for you. Shared Decision Making  Allergy & Asthma Network and CHEST have created a tool that allows clinicians and patients to work together to find the best treatment.  The patient tells the doctor their preferences, and the doctor figures out their labs and bio markers.  That helps them figure out the best medicine for their asthma.  They say: "Targeted therapies + shared decision = personalized medicine" Here's an example of what you fill out as a patient Pretty easy, right?  Having a say in what inhaler you take for your asthma is important.  If you don't like it, you won't use it - right?...

 This is one of those words that can strike fear in people  Mold For those of you who have had mold in an apartment or home, I get it. I do.  I had black mold in my first two homes.   I've attended many in-depth trainings for my environmental health job. And I now help other families with evidence based interventions. (And a few stories about our experiences thrown in.) Here are some basic things I learned along the way: Health Effects of Mold Mold can irritate the throat, lungs, eyes, skin and nose. It can also cause an asthma flare. When we  found black mold in our play room, our daughter had just been discharged from the hospital after a battle with pneumonia. Can I link it to the mold? Maybe? You don't need to "test for mold"  The Environmental Protection Agency (EPA) says: "In most cases, if visible mold growth is present, sampling is unnecessary." When we had mold in our first home (20 years ago), the disaster cleanup company wouldn't allow thei...