Asthma as a family disease
Like many chronic diseases, asthma doesn't just affect the person who has it - it affects the whole family.
When my kids were little, they were sick - a LOT! And they were hospitalized 12 times (usually with pneumonia.) And it was always a tough time for the whole family.
And that meant plans went out the window. Sleepovers were cancelled, dinner was missed, and basic things around the house were neglected.
When one of the kids was in the hospital, that's all we would focus on. Who would spend the day/night at the hospital, who would spend the day/night at home with the other kids.
We would run out of groceries, the lawn would need to be mowed, homework would be skipped. Soccer practice? Nope. Scouts? Sometimes.
We would fit in whatever we could.
I remember driving home from the hospital late one night with Son #1 while Hubby stayed at the hospital for the night. (Son #2 and daughter Kitty were both in the hospital with pneumonia.)
We were almost home when Son #1 said, "Hey mom, the new term starts tomorrow and I need gym shorts since I'm starting a gym class." Not kidding.
It was 10:00 at night.
I was exhausted, had a killer headache, and just wanted to climb into bed.
So, what's the closest store that is near me and open late - and carries gym shorts? Well, we started out at Target and had Walmart as a back up. Luckily, there was one pair of black gym shorts left in his size - what are the odds? We were in luck!
In the early years, we muddled through parenting and never won "Parent of the Year!" awards.
Were we perfect parents? No. Did the other kids get neglected? Yep.
Did we muddle through and all survive?
Yes.
Asthma also affected our jobs.
Hubby and I would often miss work as we tried to juggle kids in the hospital and kids at home. The kids weren't hospitalized EVERY time they were sick, sometimes they were just sick enough that they would need to stay home and miss 4 or 5 days of school. So, that meant one of us would need to stay home to take care of the kids.
What can you do when you have a kid with asthma who seems to always be sick? I would let the kid's teachers know that they had a brother or sister in the hospital and that my child may need extra love and attention that week.
I would let the neighbors or grandparents take the kids to scouts, dance, soccer games and out to dinner.
When people would ask, "What can I do?" I would tell them!
Do you have time to drop by the pharmacy? Can you pick up milk and bread at the grocery store?
It takes a village to raise a child, so call on your fellow villagers when you need a little extra help.
This may seem weird and random but how do you usually nebulize? I sit in a recliner in the game room and read or blare the tv if my husband isn’t home. I nebulize duoneb, pulmozyme and pulmicort along with the vest. Whole routine takes about 2 hours. I have a bad habit of not throwing out empty medicine vials and they accumulate: I just cleared them out due to my Husband’s nagging. Not many people I know nebulize regularly and it is interesting to see others nebulizing routine. Do you use the verb nebulize?
ReplyDeleteWhen I use my nebulizer, I just sit in the living room and watch TV, but I don't have to do as many as you do!
DeleteI am always picking up the empty vials from my daughter. I have a big cream fluffy rug in my living room, and more than once I have stepped on an empty vial that my daughter left on the rug. Ouch! So I make sure she picks up her empty vials now!
I haven't used the verb nebulize, but probably should! :)
Also I was thinking about autistic people nebulizing. I have aspergers and can sometimes be very sensitive to loud sounds and I wear earlplugs. It’s more intense if I am stressed. I’m not sure how someone who is more profoundly autistic can tolerate nebulizing. I haven’t found much information on that specific subject. Perhaps I could start the discussion
ReplyDeleteI have sensory issues, so the nebulizer does bother me. We have found that if we put it on the ground on the fluffy rug, it really helps muffle the sound. If it's on the ground with the wood floors, its VERY loud! :(
DeleteHow do you handle using an inhaler while driving? I commute from Houston to college station twice a week (2 hour drive one way). I sometimes have coughing spells so bad I need to use my inhaler. I make sure I nebulize before I leave. For a great portion of the drive it is a 2 lane road with no shoulder or passing lanes so I can’t pull over and use it. I have tried using it while driving but holding my breath can make me feel lightheaded. He speed limit is also very high and you can’t go slow because there is moderate traffic. Any ideas?
ReplyDeleteWow, that's a tough one.I had to use mine once while driving but was able to make it to the next exit and pull over and use it.
Deletey first thought is - is there something in your car that triggers an asthma attack? You mentioned that you use your nebulizer before you leave, but then can still have an attack in the car.
My daughter recently bought a used car and we had it inspected before we bought it. They recommended that we change the CABIN air filter (so the air filter inside the car). The mechanic showed us the filter when we picked up the car - it was very black instead of white. So, that very dirty filter was blowing a lot of impurities into the car as my daughter drove.
We had the cabin filter changed at Jiffy Lube while we were getting the oil changed, so it didn't take much extra time.
As for the mechanics of how to use your inhaler while driving, I would call your doc and ask her. It may help her to know that you nebulizer before, but less than 2 hours later need more Albuterol.
Maybe she would want to adjust one of your meds? Or maybe she could recommend a safe way for you to use your inhaler while driving? It would be safest to pull over, but that looks like it's not an option.
I wonder if she would want you to try to shorten the time you hold your breath?
Sometimes I can only hold my breathe for 3-5 seconds (you know how the doctors tell us to hold for 10 seconds....or a long as possible.)
Sometimes I can't hold my breathe for very long. You shouldn't be holding it long enough that you feel lightheaded.
Call you doc and kick around some ideas with her. But I would also check the inside of your car. Not only did we change my daughter's cabin air filter, but we used a micro fiber cloth to clean the dashboard, gear shift, door panels, etc. We also vacuumed out the car. All of that cleaning seemed to help.
Maybe you Hubby can clean your car out for date night tonight! :) Doesn't that sound like fun?!!
Seriously though, it may help to check the inside of your car and see if a good cleaning might help reduce whatever is triggering your lungs :)
You were right about the cabin air filter. Husband removed it and t was black and I’m coughing a lot less while driving now. Texas is very weird, I washed my car last week because it was getting pollen/sap on it and the whole car was sticky and the windows blurry. It went right back in a few days. I really hope it freezes over this year and kills all the mosquitoes and become less hospitable to mold
DeleteI'm so glad that helped you! Now that we have changed the filter on my daughter's car, I think we'll change the cabin filters on the other cars!
DeleteAnd speaking of pollen - we traveled to the southern end of our state where it's usually hotter and drier than where we live. Hubby put the windows down to enjoy the "fresh air". You guessed it - I woke up coughing all night long. I had to shower and wash my hair this morning and re-wash my bedding. :(
Hi Andrea,
ReplyDeleteCame across your blog and I fell in love with all of the personal touches. Congrats on tackling the Delicate Arch!
COPD and asthma go hand in hand so I wanted to share some new research. The team at Inogen analyzed 640 medical posts added to the American Lung Association's online forum. By doing so, they were able to look at common COPD patient symptoms and experiences.
You can take a look at the page below: https://www.inogen.com/resources/health/relating-copd/
Let me know if you have any questions about the report or if you would like to share with your readers!
Best,
Dana Hummel
Hello Andrea, I'm a nursing student at The Ramapo College of New Jersey and I am doing a global health project on asthma. Your blog is unique being that you are not only an asthma patient but also a mother to several asthmatics, it provides people with a different perspective of the disease because you elaborate on the total impact of the disease not just the biological.
ReplyDeleteMy question for you would be, if there was a family such as yours without the resources that you stress to utilize (grandparents, neighbors, friends), what would be some general recommendations you would make to maintain a normal family life while simultaneously managing the disease?
No matter where you live, most people interact with someone on a daily basis - Co-worker, church member, friend on the PTA board, teacher, book club member, clerk at the grocery store, whoever is in your circle of acquaintances.
DeleteEveryone is going to have a different support system.
Some people are more independent and stock up on freezer meals or have a well stocked pantry, just in case they are sick and can't make it to the grocery store. Many people also prefer to order take out.
Since you are going into nursing, just a little info to help:
For those of us with chronic diseases, most of us prefer to be know as "person with a disease". So, I cringe when I hear "asthmatic" or "diabetic" or "epileptic."
I will always say, "I have asthma" or "all 3 of my kids have asthma".
I never call myself an "asthmatic" with a house full of "asthmatics."
I usually say that I have asthma, as do all 3 of my children.
We need to be known as full people, and not characterized as a disease.
Just something to think about :)