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To me, asthma is …

Asthma is unique … no two people have exactly the same experience with it, which means that it's often hard for others to know exactly what we're going through.

For some people, asthma's the "oh, I have to use my inhaler on occasion."

For others, it's, "my inhaler's my lifeline."

For me, asthma's like breathing through a pillow filled with feathers. It means not opening the windows on beautiful spring days. It means holding my breath when I go down the cleaning aisle. It means reaching for my inhaler when I see someone lighting up. 

What is YOUR asthma like? How do you describe it to your doctor? To your family? to your friends and co-workers?

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  • GigiGibson

    Hi, 

    My asthma is an intruder. It came and took away my ability to sleep, to be outside when it's anything but perfectly temperate, to be around good smelling folks and places, to go where I want and do what I want. It ties me up to a machine several times a Day and makes me put powerful and potentially dangerous chemicals (called medications) in my body over and over and over several times a day everyday of my life. Guess what? After all that it still makes me sick, weak, takes away my ability to work, play, keep house, have fun, plan for the future I wanted. I hate it. 

    Im trying everything I can to get better. I won't stop trying either. I'm compliant and I'm committed to getting better. It's been a year since I was first put on an inhaler. Next month is my anniversary of the diagnosis. My goal is to be better by then. I think I'm on to something, I'm listening to the stories of others who have found personal breakthroughs and praying I find mine, even if it's just better control. I'll take that! 

     

  • K8sMom2002

    Gigi, you really have nailed it! Asthma IS an intruder … and a thief. It takes away our time, our small pleasures and our tolerances. 

    But you ALSO nailed the best attack against asthma — being compliant, listening to others' stories about what worked for them, trying changes in the way we live our everyday lives to make things better. 

    We'll get there! Fingers crossed that your anniversary day will find you better with more control. 

  • Shea

    Asthma, to me, is a symptom. I guess, for one, asthma is part of the larger disease: Churg-Strauss Syndrome, a chronic allergic disease that affects my heart, lungs, skin, blood vessels, and all major organs, and has a serious prognosis, killing many in the first 5 years. And it is an effect of a smaller disease: allergies. Those diseases are often difficult for others to to see, but in my case they are controlled mostly with steroids, which has such visual side effects that other people mix up with obesity and poor eating and lazy lifestyle. They mix up my avoiding allergens with fussiness. It gets very social, very emotional, very lonesome. I used to pride myself on my ability to stay calm in stressful situations, to give my jacket to a friend and be a little cold myself, to be tougher than others, to sit nobly through discomfort. I liked that I could to that. I used to work hard, the hardest, and help people. But I cannot do any of that with this. I had to relearn how to live again. I miss my old self. Other people in my life have had to watch this change, and they miss my old self too. But there were some people that I learned took advantage of my old self, like leeches and parasites who had clung to me and drained me in ways I was completely unaware of. In this lifetime, I am learning how to take care of myself and find pride in that. And my asthma is my helper, it literally threatening my life if I fall into old patterns, or work too hard, or allow leeches or parasites to grasp onto my kindness. I cannot afford to lend or be stolen from. To work too hard. To give a jacket. Now, I am ther one who appreciates it when someone lends me a jacket (as long as it doesn't have cat or dog hair on it, lol). My asthma is my teacher. My indicator for a greater disease. My 6th sense for allergens and harmful things. And I hope to use it to navigate my way to a better life.

     

  • K8sMom2002

    Wow, Shea. This was so beautifully put. 

    I like how you frame asthma on YOUR continuum … allergies → asthma → Churg-Strauss Syndrome. 

    And I when I read that about you missing your old self, and how you could no longer afford to lend your jacket.

    You may not be able to lend a literal jacket, but you lend a figurative jacket every day here — you share your knowledge and your experiences to people who are just beginning to figure things out. You make sure THEY are not alone. And that, my friend, is a "jacket" that will warm against the coldest blizzard. 

  • Shea

    Thank you guys  You all make me feel less alone, and have helped me too, help me understand symptoms and treatments, help me open up to my family and friends from hearing other your experiences and stories, good and bad, … it is definitely two-way (sharing and hearing) helpful. And I am learning to love my new self just as much as my old self, there are pros to each side, and it is like that lean on me song, I just never knew it'd be harder for me to lean on others than to be leaned on myself… And I was stumbling around a lot for a while as those who used to lean on me a Lot had to either see where I was at and readjust, or some just left, but the people in my life–family, friends, and strangers– who stepped in and held/hold me up… That is a pretty magical feeling… Love and support. And you all here on this forum really do help hold me up, and make progress with allergies, asthma, and Churg-Strauss, and in life. 

  • Jen

    Oh Shea….. I am so glad that you have found the support on this forum to be so helpful.  

  • K8sMom2002

    Shea, I'm glad we could help! And yeah, leaning on others, admitting that we need help is so hard. I've learned that — and learned who my friends are, and that I have unexpected strengths that I didn't know existed.

    So maybe asthma is an opportunity to learn new things.

    Yeah, it's not the opportunity I was exactly hoping for, but it helps me sometimes to think about anything positive or salvageable out of a situation. 

  • Pljohns

    Shea, I'm new here but so admire what you have written.  I'm trying to get to the place that I can ask and accept help and put myself and my care first-haven't gotten there yet by a long shot.  For the last 5 years, I've been determined that asthma wasn't going to run my life-I was in charge-that was until I landed in the hospital 4 times in less than a year-3 times in less than 6 months-and have sort of realized that I can't pretend it's not there.  I still very much have a tendency to "not have time" to do nebs when I need to and not slow down when I need to and I guess that boils down to not accepting the disease.  I will absolutely put off prednisone until it is all but too late(like o2 sat at 91, blue finger nails and lips and unable to talk)-of course by then, prednisone isn't going to help.  I guess for me, asthma has just been a pain in the backside that I refuse to give in to.  I work full time, have 2 teenagers and live with no family or good friends in the same town, so I don't feel I can slow down.  I manage therapy offices so I'm always on the run and have everything to do at home.  My husband of 25 years isn't so great at doing much to help.  Aging parents that depend on me-even though they are 12 hours away-and other siblings that won't help with either side of the family add to the load.  There is NEVER time for me-let alone time to take care of this awful disease.  So, to answer what asthma is to me, I guess it's just one more thing that I have to find time to deal with.

  • K8sMom2002

    PLJohns, you sound like you have a lot on your plate.

    I'm like you — my DH of nearly 27 years is … hmh … well, you can't teach an old dog new tricks, now can you? He's a good guy, but he was brought up a southern boy by a southern mama, and he came to me definitely a trifle spoiled.  

    But as a mom to a teenager myself, I've had to remember that she needs me not just now but in the years to come. So I've tried to follow the advice of flight attendants and put on my own oxygen mask first. I don't always do it, but I've learned that taking the time to handle my own health needs is really helping her, too. 

    What are some non-asthma issues that are draining time away from you that you could use to neb or take care of you? I've learned to rob Peter to pay Paul in a sense — if I can be more efficient at one thing, that gives me more time for a higher priority. 

    Maybe we can help you brainstorm more ways to ease that list of things you need to deal with. 

  • Pljohns

    Your DH sounds like mine-super guy but raised by a southern mom that thought he shouldn't raise a hand to do anything.  

    Until I changed jobs in Oct, I was working 55-60 hrs/wk-rolled into work at 6:15AM, no break, out at 5 and home to cook dinner, eat and work more.  It was nothing unusual to be trading e-amils at midnight and back the next day to do it all again.  My new job is AMAZING-40 hrs/lunch almost every day and people that seem to understand-aside from picking on me about my hand held neb looking like a crack pipe or a vape pipe.  

    So, work is better, our 2 teenage boys help A LOT (especially for boys)-they have done all of the laundry for years(wash, dry and fold and put their own away), they clean the 2 extra bathrooms(theirs and the guest one), the keep their rooms impeccable, take out the garbage, will unload the dishwasher if I ask and will help me start dinner if I'm running late-I can't ask for much more than that!  I do still have all of the household finances/bills, all of the errands, grocery shopping and the rest of the house cleaning and cooking.  I splurged BIG TIME and bought a robot vacuum cleaner-absolutely THE BEST thing I've ever bought!!  It runs every day during the day so all I have to vacuum is the stairs (only thing with carpet in the house!) and then what few pieces of furnature it can't get under.  

    I've tried desperately to find something to shave off so I would have time to do nebs but every 3 hours when I'm having issues, is a pain and usually falls when we are out running errands or when I'm trying to get dinner cooked.  Everything we eat has to be made from scratch-no premade, boxed, frozen or running by to grab something.  DH has high blood pressure and can only have 500mg of sodium a day-that means making EVERYTHING-bread, pasta sauce, pasta, everything and only fresh or frozen vegi's.  It means I have to be home by 5:30 to have dinner ready by 6:15 when he rolls in.  If we eat later, his reflux keeps him up all night, then it's to the gym to walk, home and shower and usually in bed between 9-10 and back up at 5:30 the next morning.  

    I work in a setting where I am everything-front office, manager, everything so every time I try to do a neb with my ultrasonic(which takes longer), the phones start ringing or someone comes and needs help and if I bring my neb with the battery pack, it  makes enough noise that everyone stares at me so nebs at work at tough.

    Any suggests you guys have would be AMAZING.  My husband fusses because I don't do nebs like I should but doesn't understand what that means and as many times as I've tried to explain it to him, he will never understand.

  • GigiGibson

    I'm with you Pljohns, I'm up at 5:15-530 and nebbing three or four meds while doing the make up and some arm weights and picking out clothes. I take lunch and us 12 minutes for a duoneb then wolf down my food or eat at the desk afterwards. If I'm having a bad day it's two additional breaks for nebs. I go to u used conference room.  I'm usually running errands after work, which means food hunting,  then home to cook . We are vegetarians and I'm now on  He crazy diet of trying to eliminate inflammation so gluten, sugar, corn, sulfites, boxed,preservative stuff is out for us. Basically lots of veggies and of course hubby,son And granddaughter are there so I cook stuff they like too. Three more meds to neb after supper on the couch then shower and bed. It sucks, it takes time but what do you do??? 

  • K8sMom2002

    PLJohns, I totally get what you mean about cooking from scratch. DD is allergic to corn, and that leaves many, many things to be cooked from scratch.

    I hear ya on the robot vacuum — love it! And I'm so glad your boys are pitching in. Their future wives will be much better off than we were, no?

    Things I do to shave time – 

    • I use a revolving menu to solve meal-planning – my dh doesn't like to eat anything more than once a month, and he hates leftovers. So to save $$, time and effort, I have a revolving menu. I brainstormed 35 meals, which will cover four full weeks plus the weeks when I have a 5th Monday or Tuesday or other day of the week.  I used Outlook at first to lay out my menu so that I could put things on a "repeats every four Tuesday" sort of cycle.
      • First Monday – lasagna
      • Second Monday – spaghetti
      • First Tuesday – Beef fajitas
      • Second Tuesday – Hamburgers
      • I do each night by a theme night (Monday's Italian, Tuesday is (except for 2nd Tuesday) Tex-Mex, Wednesday's a quick meal, Thursday is southern comfort food, Friday's fish, Saturday's sandwiches, and Sunday is typical Sunday dinner type of food.)
    • Then I load those recipes into my app to help me keep up with my grocery list. It will automatically generate a grocery list for me — woohoo! It also has a way of keeping a running inventory of what you have on hand. AND you can customize the grocery list so that it is in order of the aisles that are in YOUR grocery store. Boy, does that save me time!
    • I use my pressure cooker and slow cooker to help shave minutes off cooking time.
      • I love, love, love my pressure cooker. It allows me to
        • go from dried beans to from-scratch baked beans in 45 minutes — and that includes coming up to pressure and cooling off. 
        • use healthier whole grains as well, because I can cook brown rice in 20 minutes.
        • cook entire meals at once — meatloaf, potatoes from scratch for mashed potatoes and steamed carrots, all in about 8 minutes under pressure, or yellow rice casserole in five minutes, or pasta with marinara with no draining in 5-7 minutes under pressure. 
    • Sometimes I use my pressure cooker AND my slow cooker. I can put a hunk of meat in the slow cooker, and then when I get home, I can drop rice and frozen butter beans in the PC and have it done in 8 minutes of cooking under pressure. 
    • I cook ahead/prep ahead and freeze things. 
      • (yep, you actually CAN freeze it)
      • pasta sauce
      • black or white beans from dried beans
      • cooked rice (for a quick fried rice) 
      • marinated meats/chicken 
      • bread/pizza dough — you can make your own brown-n-serve rolls by par-baking them and then freezing. You can roll out your own pizza dough and flash freeze it in a big ziptop bag (Hefty, I think makes the ginormous bags that you can fit a pizza in.) You can even pre-make your entire pizza. 
      • Whenever I'm cooking something, I ask myself, can I double this and freeze it? If I have leftovers, I will package them up and tuck them in the freezer for MY lunch.
    • I automate what I can:
      • vacuum with the Roomba
      • Bill pay by direct draft when I can
      • I use the delay timer on my washer and dishwasher. I don't know WHY that saves time, but it does. Maybe because if I go ahead and do it, I don't forget about it? 
      • Schedule for cleaning — it's easier to clean something that's lightly dirty than really dirty, ditto with clothes. The times that life works best for me are when I have a routine that I don't depart from. 
      • Three-compartment hamper so clothes are sorted as they come off our bods.
    • I try to avoid things that create more work for me.
      • Bar soap, for instance, leaves all that gunky residue, so I use liquid soap.
      • All my sheets, towels and dishcloths are white — no sorting, so I can toss it all in there with bleach and be done with it.
      • Limit what I can of things that are hard to clean (knick-knacks — except for the ones DH gave to me and I can't get rid of), any horizontal surface that's not absolutely critical, anything that I have to dust over, under or on top of.
      • I try not to buy clothes that have special laundering directions. 
      • At every store, I have a spot that I park in. That way, I never have to think about "where's my car?"
      • As for errands, if I can do it online, online is the way I go. Otherwise, it waits until Saturday — or DH can do it if it's absolutely critical and he needs it. 
      • Library books — I borrow e-books so that they return themselves! 
  • K8sMom2002

    Oh — one other thing. I have a strict routine for the dishwasher. It's unloaded first thing in the AM, so that it can catch dishes all day long. Then at night, I schedule the delay so that it washes after we go to bed. DH has the task of unloading the dishwasher every morning. That little trick saves me from walking into a dirty kitchen, because you CAN train even a southern boy to put his dishes in the dishwasher rather than the sink.

  • GigiGibson

    Wow Cynthia! You have mad skills for food organization. I have been a throw and go mess for two + years now as a vegetarian. I used to have meal lists for four or five days but never a monthly or rotating schedule. I have lots of fresh veggies so I can't shop for much at a time. I did for so long and ended up throwing stuff away. Our meals are a lot simpler. Like steamed brocolli and brown rice with a side of some kinds of beans. Most ppl would starve at my house, lol. I would do some traditional Italian meals, mushroom or spinach stuffed things or pasta primavera but I was going overboard with the cheese. My hubby has high cholesterol since the first time they checked it in his early 30s and he is not obese. He also has prostate cancer in the family so we need to reduce his dairy. I'm off it but he is holding on to his skim milk for cereal. He is not adding cheese to his pasta or salad unnoticed so good for him. 

    I love my presets too, even in the washer. That way we all get showers, go to bed and then the appliances can do their thing. 

    I get hubby to unload and load the dw then give him tasks to help with meals when he is here and asks to help (usually). Sometimes I'm just sitting and supervising if I'm not doing well. He is good help when he is here. That varies greatly. If he doesn't like what I have or I don't feel like cooking he will fend for himself. That doesn't happen much. After 28 years of keeping a home I like to feed folks. The granddaughter and son are here too, she is here 50% and he is gone a lot when she is not here so those days they are here I make sure I fix something she likes, if that won't work I tell her daddy to take care of it, he's an ex- chef. Her favorite is bean bowls. Mine too I guess. 

    I feel so inadequate that I don't have any cool apps or tips and tricks to share! 

    But hey, speaking of cool stuff. I'm thinking about getting a Wing. Any of u guys have one?

  • K8sMom2002

    Gigi, one of our members, .  She mentioned it in a thread, but said she would need time to see how it was working. You might follow up with her and see if she would recommend it. 

    I think your meals sound awesome, and you definitely inspire me to include more veggies in our meals. I don't do so hot at that unless I plan for it — and for just the reason that you say. Buying fresh produce ahead is hard.

    I live about 35 minutes away from the grocery store where I shop, and it has the best produce selection of any store around. If I buy up produce ahead, I have to use it early in the week, or risk losing it.

    Summer time is easier, because I do try to grow some of my own veggies, if it's just tomatoes, peppers, okra and squash. And my dad usually finds me some fresh green beans for me to freeze, and I also try to can tomatoes at some point during the summer. 

    I have found some tricks to keeping leafy greens and cilantro fresh and prepped — if you use the , you can shred washed and drained lettuce or cilantro early in the week and have it on hand for later in the week. I got one of those jar sealers to use. It really works, but it does mean you need to prep all your salad/leafy greens early, and I always seem to find a way to procrastinate. 

    Also, since I found out that even romaine lettuce doesn't have much going for it compared to broccoli, kale or other more nutrient-rich green leafy veggies, I decided that I would opt for frozen greens, frozen butter beans, or frozen okra instead. (Or is it just a way for me to rationalize not washing lettuce? ) 

    So my go-to items for fresh produce are: vine-ripened tomatoes (sometimes in the winter, I buy green ones and let them ripen naturally), broccoli (can't abide frozen), carrots (ditto, and because they hold better than most veggies), garlic, bell peppers, mushrooms (we eat a LOT of mushrooms), onions, cabbage and potatoes. When things are on sale, I'll treat myself to tomatillos (thank you, Kathy P for encouraging me to try those little guys!), avocados, asparagus, leeks, and rhubarb. 

    I'm really trying to increase our bean-intake and reduce our meat-intake. And I need to get back to having at least three veggies for each meal. It's way too easy to slap down a starchy pasta-based meal with no veggies (last night was a prime example — fettuccine alfredo with a limp excuse of a salad that was basically iceberg lettuce and tomatoes). So any veggie dishes you can share, I'd be much obliged!

  • Jen

    pljohns – One thing I do to make time for "putting on my own oxygen mask" is to just flat out blow off some things around the house.  I generally keep up with meals, dishes and laundry, but sometimes it all just has to wait because I will get overly stressed (and sometimes sick) if I don't do things for myself.  But…that is truly a balance because I also go crazy when there's too much clutter.

    As for meals, if you need easy "scratch" meals, I have a few ideas:

    • Make your own salad night.  You can get prewashed salad, cut up whatever veggies you like, add some protein (we usually have lunch meat, hard boiled eggs and cheese), have some crunchy toppings and a few dressings available. Prep can all be done ahead of time and then you just need to set everything out.
    • When you cook, do you ever make an extra batch for freezing?  Sometimes that only takes a few more minutes and then you have another meal ready to go. I often make enough of certain things and then have more leftovers than we'll eat in a reasonable period of time.  So, I've taken to freezing them.  It's nice to have those to pull out from time to time.
  • Pljohns

    thanks so much Jen-unfortunately I have 2 teenage boys that wouldn't touch a salad if it was the last thing on the planet and a DH that won't eat left overs.  It's fresh full dinner every night.  If I freeze the left overs fast enough that he doesn't see me, I can hide the vegi's in soup and the left over hamburger meat in spaghetti sauce-things like that, but he won't eat something that has been prepared and then frozen.

  • K8sMom2002

    PLJohns, we must have the. very. same. hubby.  

    Let me guess … visible meat's a must at every meal?

    One way that I've gotten around that is to make leftovers look different. For instance, I'll cook extra meat or chicken, and then I can use it in something else. Recently I took leftover pork chops and made pulled pork from them. 

    Another way is to make dishes ahead but don't cook them. When I had long commutes and would get home late, I would put together a pan of lasagna and freeze it uncooked (I use the no-boil method). Then it was a matter of laying it out in the fridge the night before. When I got in from work, I popped it in the oven. 

    If he'll do quiches, you can do the same thing with that. But I'm betting he's like my DH and quiches are a no-no. 

    Let's see … other time-shaving tricks to get around DH's who want to see you cook a full meal:

    • For meat dishes with marinades, portion the meat out when you bring it home, and put it in zip top bags with the spices, etc. They marinate when they thaw.
    • Prep and freeze them uncooked. Then you can lay them out the night before and pop them in a slow cooker. Dinner's ready when you walk in the door.
    • If you make your own pizzas, you can assemble and freeze them uncooked. 
  • Pljohns

    ooohhh thank you!  I hadn't thought about the lasagna one (I use the no boil too) and he would definitely eat that.  I've recently purchased an electric pressure cooker and OMG-THE BEST thing I've EVER bought myself-roast/pot/carrots from frozen to falling apart in 50 min, teriyake chicken and rice in 10 min.  I'm still trying to figure it out but it's amazing.  Our kids don't like soups or stews so that' a challenge too.  Aside from salads or soup, they will eat almost anything.  I hadn't thought about the pizza either.

    In a month, I'll have a home clinic again but for the last 6 months I've been a floater-sometimes with up to a 2 hr drive to get home and when you don't get off until 5, that makes having dinner by 6:30 a challenge.  If DH eats any later, he's up all night with reflux (we make a pair don't we??).

    Thanks for the awesome suggestions-I'll be putting those to good use!

  • K8sMom2002

    A great pressure cooker cookbook would be anything by Lorna Sass. She just opened my eyes to everything you can do with a pressure cooker. I've really enjoyed cooking things like a whole meal-that's-not-a-stew in my pressure cooker. 

    For instance, depending on the size of your pressure cooker, you can cook a at once. I also make a mean cubed steak and gravy in 7 minutes under pressure — with the potatoes in there, too, for easy mashing.

    And I like what I call the five-minute suppers — suppers that are all in the pressure cooker, and cook in five minutes under high pressure:

    • yellow rice with chicken
    • penne pasta
    • mac n cheese (you cook the pasta, and then add the cheese and milk)
    • sausage, rice and tomatoes 

    One thing I like to do is to use my PC for double-cooking — I put frozen butter beans in there, and white rice in a metal bowl atop the beans, with the water and salt added in the bowl. In 8 minutes, I have perfectly cooked butter beans and perfectly cooked rice — no scorching, no sticking. Ditto with field peas. My DH loves me lots because whenever we have beans or peas now, we also have rice. 

    When I cook mac n cheese, I also cook frozen turnip greens — greens go in the bottom, and the mac goes in a bowl atop the greens. 

    We should totally start a cooking for asthma thread …

  • Pljohns

    Sounds like you do WONDERS with a PC.  I haven't had mine long and am still trying to figure it out.  I'm still not comfortable enough to branch out on my own and cook things-still following a recipe 

  • K8sMom2002

    PLJohns, no lie, I was terrified the first few times I used mine. I was sure I was going to blow the house off its foundations. And I'm not adventurous — I stick with recipes and times on charts like the . The only recipe I sorta invented was a lasagna recipe … and that was just a, "shoot, this has gotta work." And it did! So now when I'm in a pinch, I cook lasagna in my PC. 

  • Pljohns

    I have visions of the old pressure cooker my grandmother used blowing up-she blew up 2 somehow and shot cooking food everywhere and a hole in her ceiling with the little pressure valve cover!  I could just see me being my Grandmother all over again.  Took me forever to rake up enough nerve to even buy one-

  • K8sMom2002

    My mom blew dried lima beans all over her ceiling. The new ones won't let that happen. We'll have to compare recipes!

  • Pljohns

    Definitely!  Mine is electric and I love it-still too scared to even think about the old style!

  • K8sMom2002

    PLJohns, what have you been brewing in your pressure cooker?

    And I was thinking about this thread today — Melanie Carver's post about how  reminded me how lucky I am to have found this community.

    Before AAFA … asthma was loneliness. Now with AAFA, I don't feel so alone. Thank you, friends! 

  • Pljohns

    I wish I could say a lot….but….nothing new lately.  Haven't had time to even think about it much.  I REALLY want to try the lasagna in it-that's one thing I don't have time to make very much and my crew loves it.

  • K8sMom2002
    Pljohns posted:

    I wish I could say a lot….but….nothing new lately.  Haven't had time to even think about it much.  I REALLY want to try the lasagna in it-that's one thing I don't have time to make very much and my crew loves it.

    I'm going to start a thread about cooking with asthma … easy meals and tips and tricks. Maybe we can all help each other out! I'll share my PC lasagna recipe over there.

    See? After AAFA? Friends who understand!

  • Pljohns

    ooooo…….thank you so much!  I just saw the thread-I'll add my teriyaki chicken and rice

  • Pljohns

    Teriyaki chicken and rice for dinner tonight so I'll post the recipe after dinner

  • Payton's Mom

    As I see asthma from a different lens than it seems many of you do since I do not have it myself but care for my 7 year old daughter who struggles with it, I see it as a sort of childhood thief. She is growing up faster than she ought to. She knows more about her disease than you would expect. She likes to be educated. She asks a lot of questions, and her father and I believe in being honest with her. I feel like the constant fight for her life she is always in, trying to essentially breath through a coffee straw most days, has made her less interested in being a "normal" kid. She has only one friend (something we are working on very hard with her school to change). She is too old for her own good. She doesn't relate to her same age peers. She focuses her attention on pulse ox numbers, scolding her teachers for providing her asthma treatment 5 minutes later than they are supposed to, etc. She is a neurotic little girl when it comes to this disease. She isn't the carefree child she would be without it.

  • GigiGibson

    Wow, I'm glad she takes it seriously by then it's sad that she has to know how serious it is. I'm so sorry, I had a child with asthma but his mind d of faded as he got older and was never one to land in the ED. We were blessed. I myself have developed this as an adul and I am overwhelmed most days at the age of 47. That's a strong young lady you have, very strong. I get it, life is precious and being well is critical, no time for nonsense. Wish I could give us both some carefree thoughts and days…..especially her. I feel blessed to have had most my life healthy. 

  • K8sMom2002

    Payton's Mom, I hear you on having a kid who is "old" for her age, and I agree — asthma is definitely a thief of childhood. That's so beautifully put!

    What strategies are you and her dad doing to help her find new friends?

  • Payton's Mom

    We have spoken to school staff to try to pay attention to any blossoming friendships so we can encourage them outside. We had one sleepover with a friend but didn't seem like the right kid for her. We put her in pioneers  (the lutheran version of girl scouts), rec programs, YMCA programs, etv. We try to get her into groups outside of school to broaden her pool of choices. She is very friendly, but she struggles developing emotional attachments it seems. She has always been that way through (apart from very close adults). She is also hypersensitive to noise, and kids are very loud, often too loud for her. She has no problems with kids though. One kid kept trying to bully her. She wasn't feeling it. They'd diss her haircut and she kept telling them, "it's a good thing it isn't your haircut, but I love it so I'm happy." She is very odd. Very sweet and kind and sincere but . . . Odd.

  • K8sMom2002

    Payton's Mom, I was that kid when I was little — itty bitty kid with 50 cent words coming out of my mouth. For me it was because I was the baby of the family, so there was only adults around to talk with, and because I was very small (so I wasn't very athletic), and liked to read a lot.

    We lived out in the country, and my mom didn't see the need to intervene … I wish she'd been more proactive like you are — it sounds like you're really working to help your kiddo form friendships. That's the big thing, that you've made it a priority and you're trying lots of different things.

    I was kind of "tone deaf" when I was a kid … I hate to admit it, but I had to learn how to be a friend. I think that's because I grew up in a household where debate was the family support, and "being right" and proving it was what was valued. (Picture our heated arguments at the dinner table, complete with family members pulling out encyclopedias and reference books to prove our points! )

    So I had to learn the things that other "normal" people valued in friends — small acts of kindness, letting them be "right" even when I thought they were dead wrong, learning body language to detect what a person was thinking. 

    Another thing that helped me later on was when I was old enough to pick activities that I liked doing … it attracted like minded people who I had a natural affinity for.

    You've probably already done this, but maybe you could find some group activities of things that she likes doing and is really good at … the kids in that activity might be slightly older or younger, but it still might be a good fit.

    Another thing that helped me become more comfortable in my own skin: activities where I was with people, but didn't exactly interact with them on a constant basis — for instance, a yoga class, a dance class, an art class, a cooking class, or a crafts class — the focus was on the individual and their work, so there wasn't a whole lot of talking, plus, everyone started out on a level playing field.

    But over the weeks in classes like that, I got to know my "neighbors" and I automatically had something in common with them. It was kind of like parallel play for older folks!

    These tips were what worked for me, but they may not apply to your kiddo at all — it sounds as though she is a very intelligent, compassionate kiddo who had to grow up really quickly and overcome a whole host of challenges. I would agree with Gigi that as she gets older, things will get easier … we're not limited to friends who are exactly our same age or who we spend the working part of the day with, and we figure out who we "click" with. Here's hoping she finds a BFF that will support her and encourage her, and she can have the joy of supporting and encouraging that friend as well.

  • D Nice

    To me asthma is tricky. Sometimes I don't know when my asthma will start. I certainly do not know all my triggers. This year right before my birthday, I was on my job . I walked maybe a mile , and by the time I hit the steps where I was going. I was in full Asthmatic distress. That was  September 30 . By October 31st I was hospitalized. I still don't know what triggered it. I only know when I have an asthma attack, I have one big one and several little ones after The attacks just keep on coming. The only thing that has controlled my asthma is Xolair. But because I am in Alabama now my insurance company keeps denying it(I'm from Washington DC). Recently I was fired by a doctor in Tuscaloosa Alabama. Not for being non-compliment but because my doctor got a new nurse. I found the company that makes Xolair and they have agreed to give it to me for free. Well my doctors new nurse did not fill out the paperwork so that I could get my medicine, and we got in it. So my doctor told me it was too much trouble to get me my medicine. I really hate it in Alabama , I never had to go through anything like that in Washington DC. As a matter of fact my insurance company never denied it. I really wish I could sue the doctor.

    Anywho I found another doctor in Birmingham , and they are helping me to get my mods. Wish me luck . Right now my asrthma is unstable.

     

     

     

  • K8sMom2002

    D Nice, that stinks. Had you been seeing the doctor for long? I'm really glad you've found another doctor to help you get the Xolair. 

    I'm sorry, too, that Alabama hasn't been more welcoming to you — I'm a "neighbor" here in Georgia, and I extend my deepest apologies that you haven't felt welcomed down here in the South. I was raised to be hospitable, and it sounds like you haven't benefited from that old-style hospitality. 

    Hopefully you can find some of that around here! 

  • Pljohns

    Nice D-I'm in Birmingham too-who are you seeing?  I've been here 10 years, worked in the medical field here for 8 of those 10 and know pretty much everyone in town-unless they are at UAB and there are just too many of them down there to keep up with .

  • Shea

    Sometimes I do this thing, some of you might have heard of it: using positive affirmations–which is basically repeating positive phrases in my head or on paper once a day or whenever I think of it. And one of the basic ones I have learned and use is "I love and accept myself". After I got sick, I started to use this positive affirmation a LOT, and with curious outcomes. 

    I have a condition called Churg-Strauss Syndrome, and allergic asthma is a big part of it. The weird thing about my history of allergies is that I have went through so many phases dealing with them… I have tried to ignore them, I have tried to fight them, mask them, call them stupid, hate them, get rid of them with everything I can think of, pray for them just to go away… but with my affirmations, I am learning to accept them, and my whole disease and to think of them and this disease as tools that are working FOR me and not against me. It is something to consider. And I really do love this forum topic because it has made me meditate on this thought more.

    My asthma is like a strict mom that wants me to keep my room clean.

    It is like a caring friend that wants me to stop and take a deep breath of clean air every now and again, and that will pull me out of whatever it is I am doing to make me chill out sometimes (SIT and relax and use my nebulizer for 15 minutes two times a day, or stop and take two really deep breaths–of my rescue inhaler).

    My asthma and allergies are indicators, they are instincts–like those of a sensitive frog– I am one of the first to know when something is wrong in the environment, and one of the first to find ways to right that wrong.

    My asthma and allergies are my teachers, teaching me triggers and to make connections, and finding ways to alleviate them. I take these signals seriously, because my very life and comfort depend on finding ways to identify what is wrong, to show others sometimes uncomfortably even if I do not want to… I show people that cigarette smoke is not food for the lungs or one's health before they see the effects in themselves. I HAVE to stand up for myself, and to make changes in the environment and community that may not have come (like no smoking on airplanes, like scent-free workplaces, like foods that may be contaminants or unbalanced in their effect on a person's health or the natural world if consumed to much, and maybe m food allergies are indicators of errors in scientific genetic modifications in foods, maybe they aren't simply mistakes). I wonder so many times if these common triggers and allergies in people are not mistakes of the immune system after all.

    I imagine that my body is intelligent and that asthma is like Lassie barking and running around and telling me that little Jimmy fell in the well. I shouldn't dismiss it or call it crazy or wrong. I should follow it and think about what it is trying to tell me. So I guess my asthma is Lassie (except I am allergic to dogs, lol). Why am I allergic to dogs? I don't know… maybe my asthma is common sense that I cannot take care of a dog, that I am a single mom with a kid and that I need to take care of and feed me and my son, and if I want a pet I need to get an easier one (like our lizards).

    If there is link between something in the environment and human health… I am going to be one of the first to know about it, like the machine that picks up on tremors in the earth before the earthquake… I am sensitive. So many times in the past I have cursed it and even gotten mad at god for giving me me my own dis-ease. But, if you step on glass and cut your foot, you don't yell at god for giving you pain. You need that pain to now you injured yourself. To know to walk softly and with care. You know to clean it thoroughly and to keep it clean and to bandage it, and to change your bandages. You do not curse your foot for hurting, because the pain is just an indicator of an injury and your requirement to nurse that injury back to health. My asthma is a nurse and a doctor, telling me I have an injury and teaching me to heal, teaching my doctors to heal. One day I won't need my pain, my asthma, my allergies, or my dis-ease anymore. Just like one day the cut on one's foot will be healed, and walking will be easy again. And this disease will go away, and breathing will be easy again… I really do believe that.

    I am not really sure where my asthma/allergies begin and where I end… I know that we are connected right now, and that since I started to "love and accept myself", I feel better than I did before, I have more awareness, and more faith.   

  • D Nice
    Pljohns posted:

    Nice D-I'm in Birmingham too-who are you seeing?  I've been here 10 years, worked in the medical field here for 8 of those 10 and know pretty much everyone in town-unless they are at UAB and there are just too many of them down there to keep up with .

    I'm seeing Dr. Hassan. I had to take an IGE test to prove to him I qualify for Xolair even though I bought my med records from Maryland and Tuscaloosa. My IGE level has risen to 288.

  • K8sMom2002
    Shea posted:

    My asthma is like a strict mom that wants me to keep my room clean …

    I imagine that my body is intelligent and that asthma is like Lassie barking and running around and telling me that little Jimmy fell in the well …

    I am not really sure where my asthma/allergies begin and where I end… I know that we are connected right now, and that since I started to "love and accept myself", I feel better than I did before, I have more awareness, and more faith.   

    Shea, this is so beautifully put. I love this! I love the way you have turned a negative into a positive, and you can see this in a different light. I hope one day that your doctors can find the "dimmer switch" inside you that will turn your sensitivity down enough so that you won't have to struggle so. 

    It's kind of like a person quipped to me when I told her about my DD's diet being so restricted because she was allergic to corn. "Well," this brilliant lady said, "no one ever died from lack of high fructose corn syrup!"

    It TOTALLY changed my outlook. And you have done the same thing.

  • K8sMom2002

    D Nice, I knew this forum rocked! And PLJohns is a most excellent ambassador for the Great State of Alabama — I can tell you from all of her posts on this thread, she is a true Southern Lady who wants to welcome everyone. 

    Good luck with your tests and with your new doctor! 

  • Pljohns

    D Nice-where is your new doc-that is one that I'm not familiar with-if you need anything, please give me a shout out-I certainly don't know everything or everyone in town, but I've got connections with who is generally good and who isn't or a general direction to start a process with.  I'm so sorry your insurance is giving you a hard time here and that doctors office-geeze!  Insurance is a pain here, but I think it's getting that way everywhere.  Part of the problem is we have 1 ins. company that has almost a monopoly in this state and they rule the roost.  It makes things really tough-it's basically their way or no way and everyone is so afraid of them becasue they are so large, they get by with everything.  I hope your new doc is better and helps you-you've been through enough already!

  • Shea

    K8SMOM, 

    Thank you ☺ And, yes JUST just like what you said:

    "It's kind of like a person quipped to me when I told her about my DD's diet being so restricted because she was allergic to corn. "Well," this brilliant lady said, "no one ever died from lack of high fructose corn syrup!""

    I believe there is an intelligence in your DDs allergy that certainly applies to her, and may/ may not apply to someone else. So we ask, what is it about corn? And I think of things like, well high fructose corn syrup was used to sweeten things and added to soooo many foods as a hidden sweetener that it is hugely blamed for the rise in obesity and other health issues. Or, corn: one of the most highly genetically modified crops– taking genes from soil bacteria's and combining them in a lab with corn so they can be sprayed with more pesticides so they do not get eaten as much by bugs… What do all those pesticides due to people… Plus it has spread its seed into other fields and wiped out all these different maize varieties in Mexico that were treasured and delicious naturally… Corn has a crop-full of issues these days. 

    When I start to think of things like this, I am not desperate for a doctor to dim any of my senses… It just makes me want to listen to my senses and (in your DDs case, avoid corn!) Shoot, I cut down on things other people are allergic or sensitive to sometimes just because I give them credit and research and start to think, hey I don't want to eat that… Or I try to find more organic options and wash wash wash them since I haven't developed an allergy to it yet. I want to use my asthma and allergies as senses to find the best foods, the best lifestyle, the least pollution, etc.

  • GigiGibson

    Amen shea. Why are Americans so unhealthy? Why do we have an epidemic of autoimmune disorders, obesity, breast cancer, colon cancer and allergies?

    we don't know! So why not try to reduce the exposure to those things that aren't natural? And in the same sense why not look for natural aids? 

    If we don't fix our allergies and asthma oh well. But if we can reduce other risks and have healthier bodies it's worth it. I worked out and was vegetarian due to cardiac disease and osteoporosis in my family. I hope to avoid the stents and bypass surgery and kyohoplasty I've seen family members endure. Gotta fight!

    thanks for the mental and emotional nutrition I get here. Without you guys to encourage me, lift me up when it's tough and give good advice it'd be lonely and frustrating. 

  • K8sMom2002

    Thanks, Shea and Gigi! You guys are a great source of encouragement to me!

    The older I get, the more I believe my mom was a genius when it came to nutrition and preventative measures. Everything she believed when it came to food (slow food is better than fast food, greens will keep you healthy, white bread is not good for you, too much sugar will do you harm) has been bolstered by research. 

    You guys would probably enjoy The Omnivore's Dilemma by Michael Pollan and Mindless Eating by Brian Wansink. 

    We still need to follow our doctor's plan, but eating right can't hurt!