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Speaking up about Your Asthma

What are the best ways you have found to speak up about your asthma to family and friends? How did you say it and what were the results? How about the worst? What were the results?

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  • Jen

    What about you Shea?

    I know with dd1's peanut allergy, a lot of best/worst completely depends on the person.

  • Pljohns

    Shea-that is a demon that I"m still fighting. For the first 5 years of my diagnosis I had an attitude that asthma was't going to run my life-finished getting my blackbelt, painted, you name, I did it-often a lot more than I absolutely should have done. I had never really had any serious problems-occasional flares but nothing major UNTIL that wonderful change of life hit and my asthma took a nose dive-and I landed in the hospital for a week.  It scared me to death-for a while-then stubborn old me-got the same determination again.  

    My parents didn't accept that I had asthma until hospitalization #4-3 days in MICU and 30 days of medical leave.  NOW they get it but they live 12 hours away, Mom is confined to a wheelchair and couldn't be of any help even if they lived here.  I usually don't even tell them when I'm in the hospital.

    I kept it a secret at work-would go to my car if I needed a neb or the bathroom and I have an ultrasonic neb for my purse so no one could hear it.  The first boss I told, made me regret it, lied to HR about it and humiliated me in front of an entire room of people.  I regretted ever telling him-and I wouldn't have if I hadn't applied for a research study that would have had me out of the office some.  Bosses after that one left were great about it-until my last one-I had a ADA reasonable accommodation request that was approved for me to not be in construction fumes for more than 4 hours until the fumes had cleared-approx a month.  I was management and salaried and was cleared to work remotely from home-which I did-but she elected to ignore it-she had me working some days 14 hours in that mess-which landed me in MICU with hospitalization #4-the 3rd hospitalization in just under 6 months thanks to her crap.  Needless to say, I left that job.  I have NEVER regretted anything as much as I have ever telling anyone at my former employer that I even had asthma.

    The job I have now is super BUT the last one left a mark-I tend to not do nebs when I need them out of fear of what will be said.  My boss knows and is super but that's it-after the last round, I just am too scared to let anyone know.

    DH and the boys have been amazing, my parents are finally on board and my MIL tried to tell me what causes it and what I should do-BUT won't hear any part of her HORRID perfume causing a flare.  When she asks about my asthma, she talks to me in baby talk and asks how my breathing is-almost condescending. My 2 BIL's don't understand it-they blow it off as if it's no big deal at all, which is fine with me because they don't live around us and I hardly ever see them.  

    All in all, I've not had any good response when I've tried to tell people and tried to be honest with people and because of it, I'm too scared to tell anyone I work with-only one select co worker that has become a very good friend-and I tend to "hide" when I need a new.  I know it's not a good way to be, but I've been humiliated by bosses and coworkers-one told me I sounded like Darth Vader and started calling me that in front of everyone that I managed-and am just utterly ashamed sometimes.  I know I can't help it but DH and the boys are the only people I will do a neb in front of.  If we have company, I retreat to the bathroom-that has become the room I seem to spend the most amount of time in.  My main neb has a batter pack and I will sometimes bring it into the living room if we are all watching TV so I don't miss something, but that is very rare-and NEVER if anyone else is here.

  • Shea

    I feel like the people I have been able to really get through to and understand my asthma and triggers are my immediate family. And it has been a process. I find it involves three major steps:

    1- I tell them what I know triggers an asthma attack and/or allergic episode and the severity it has on my health.

    (When I am around cat or dog dander my asthma flares up, I wheeze, my eyes water, I get contact hives, once it progressed into an anaphylactic episode which can be life threatening. When I have chronic exposure to my allergens it triggers my entire disease, causing inflammation in my blood vessels, lungs, heart, and other organs. I have to go up on medications like prednisone or worse chemotherapy medications which cause weakened bones, weight gain, emotionalhormonal imbalances. It is not just direct exposure to the animal, I can react to dander in places animals reside, as well as to what is on people's clothing and belongings.

    2-  I tell them what I do and what my doctor's say to do.

    (I reported my symptoms, I was tested, I see a great doctor who I was referred to and is considered an expert in my disease among his peers, I take the best medications available, and I am advised strict avoidance of cat and dog dander. I do not live with or visit homes, indoor public spaces, or vehicles which cats or dogs reside in or regularly visit. I do not entertain guests inside my home who have dander on them or their belongings. I carry emergency inhalers, benadryl, and epipen with me to treat unavoidable or accidental flares.

    3- I tell them how that effects our relationship currently, some solutions I have thought of, and ask for their input. 

    (You have cats and dogs. I cannot live with you or visit your home while you have them, or 6 months after no cats and dogs and it has been cleaned thoroughly: replaced pillows and mattresses, asthma/allergy approved cleaning services, aired out, purified. I cannot attend outings at anyone's home who has cats or dogs. I know this is going to change the way we have been doing things. I have been thinking of solutions, and I am open to suggestions to: Do you want to meet out at a Starbucks or the park?)

  • Shea

    PLJohns, I have had more irrational, hurtful responses than good ones. It also ended up in me leaving a position at work.. I loved my job, I was a superviser of behavioral health, I made decent money and had worked my way up, I was the go-to person, take charge, central communicator, but I was over-worked. My allergies started mild, but pushed myself and I let people push me, into a very bad position. Boyfriend had cats and dogs. I medicated my allergies. They got worse and developed into a chronic allergic disease. I had what I call a bad doctor.. the wrong doctor. I got pregnant which didn't help except that it probably was the straw that broke the camels back. I had a heart attack at age 27, nearly leaving my then 3 month old an orphan. Boyfriend/baby-daddy/mooch-without-a-job-straight-up-theif woulkd not find a home for his cats and dogs, so baby and I had no home, then I got "cut out" because the small mom and pop business I worked for.. Well my bosses weren't really the family they let on to us that they were… They didn't want toi deal with me, give mne tine off… They didnt even want me to be able to go for unemployment. I tell ya. I lost friends. 

    But the result. I did not die. I was saved in the hospital. I found a temporary home then a permanent home for the baby I. I fought for and won first unemployment, and a while later Total And permanent disability (3rd time, with legal help) because I had tried to and I couldn't work other jobs and recover… I just could not. But I get to be a stay at home mom. I do not have to be with a person who values his cats and dog more than me and steals from me. I am not suffering and lost in confusion. I know I am on the best meds. I know I am seeing the best doctor. 5 years of hard work so far, but I am still alive, and I am improving. 

    So… You can say the right things and lose people who are wrong four you, or say the wrong things and stay with them and just… Everything gets worse until you die or nearly die. At least those were the options I had… It was really my son who gave me strength because it is just not easy too do. But.. I feel like the formula above is the best I have found… And it was not what I had to start with.. That formula helped me salvage relationships and made me feel confident in my rights.

  • Pljohns

    Shea-you are an amazing person to have gone through all of that!  You are right on many fronts-I guess I just haven't hit rock bottom yet.  I had the best doc I have ever had and in Jan she left for another position.  I haven't been able to find where she went or I would go too.  I had to give up my PCP because she got mad when I left my last job-I managed a clinic she worked in-so she got super snotty with me and I had enough.  I still dont' have a PCP-I was waiting on the flu to settle down before I got near a doctor's office.  I wish I had the strength you have-are are truly an amazing person

  • Shea

    Thank you PLJohns, you are very kind. I am so sorry that you have had so many negative responses when trying to tell people about asthma. I do not know people act irrationally and seem uncaring, but it is not all people.  In my situation… It was a lot, and all at once. My mom and dad really helped me through it. They cared. They listened. They saw the severity and attacks. And they responded with being there, supporting me, helping me make and get to appointments and how my meds were and on days my mom came over to help me with household chores. And I have made new friends and I am just honest with them but it is hard and I get scared to get too close to people because of hurtful events of the past too, so I understand. I really think this group here has been so helpful. 

    Primary care doctors are important (and I think it was great of you to leave the one who was snotty and unprofessional… But a specialist is more important to me, and if you can find at a college medical center, all the better because they keep up with the specific studies and medications and, well, they work with asthma and or allergies all day so they "get it" more . My old primary care doctor did not tell me my labs were abnormal, did not refer me to a specialist, did not do imaging. My new primary care doctor is much better in those areas. My immunologist handles the big picture of the disease, manages my nucala shots and maintenance doses of inhalers and nebs, and my primary care will see me prescribe me meds during flares like tapers for prednisone, and also for antacids, and stuff like that. I looked at the PCP who was closest to me and under my insurance, and I picked my insurance based on what my immunologist took.

  • Pljohns

    Thanks Shea-I do have a pulmonologist-I found a new one after my super one did a disappearing act but I don't really like him.  I need a doc that is gong to TELL me what to do-not one that will say "do this or that according to how you feel".  I'll run all over someone like that-they have to flatly TELL me-you WILL NOT go back to work the day after you are discharged and you WILL NOT work 12-14 hour days-you will taper getting back into work full time-stuff like that.  I tend to be bull headed and "nice" doc's just don't work for me.  the new pulmo is more of a nice guy-he was very nice on the initial visit but just didn't seem really with it.  I saw everyone in my old docs practice and didn't like any of them-some with the personalities of a 2×4 and others that just seem old and out of touch.  right now, I don't have a pulmo I'm comfortable with or a PCP so I'm just hoping I don't have issues.  My old PCP-the snotty one-will still see me-she has no idea I'm not coming back and she will send in meds over the portal but I just can't see myself going back to her and I know it but in a pinch until I find someone, she would do.

  • Shea

    Well I am glad you have doctors in case of emergencies lined up.

    That brings a whole other point up:

    it is not just speaking up to families or friends about asthma, but it is just as hard to speak up to doctors! So how do you speak up to you doctors about your asthma?

    I got so frustrated after my initial diagnosis in finding the right doctors. At first I had like 4 different specialists and no primary care doctor, my insurance was a mess… I was prescribed so many conflicting medications and I was having all these serious side effects and I felt like no one was managing my case or helping me. Then I found an allergist and made an appointment, he was reading my answers off an in depth questionaire I had filled up at consult… but he wasnt getting what was going on from that questionnaire, and I interrupted and flat out said, no, that is not really accurate, this is whats going on!!!!::: Every time I get off prednisone, I flare, I flare, I flare, then back on, another taper, a flare.. I have these meds and I read up they conflict but these specialists just want to deal with their one organ– none of these doctors are managing this disease!… and he said flat out that he wasnt comfortable managing it, and I was like sad and mad and felt alone and abandoned by the medical community… but he found and referred me to the doctor I have now. And I am glad because I do not want a doctor that doesnt know the disease and isnt comfortable managing it! You want to be comfortable with your doctors and your medications, and them comfortable with you, and know what you need them to be, and it is not on their questionnaire, its just on you to speak up… because its not like you or your doctors responsibility to get you well, its you AND your doctors responsibility. They wont do it alone, and neither will you. And my disease is different, but asthma too can be deadly and effect every aspect if your life, so I just want to always remember to speak up about your asthma! 

  • Pljohns

    I was able to do that with my old pulmo-she was WONDERFUL-she didn't cut me any slack, ask about all aspects of my life and really looked at all angles.  My current PCP is an amazing doctor, but feels her importance if you know what I mean.  She talks about patients behind their backs-LOUDLY-and is just really a jerk when she wants to be.  I' not comfortable seeing her again as I would have to deal with my old place of work-all of the employees I used to manage, the new manager AND all 6 of the docs I use to manage.  It's just too stressful to deal with all of that and know that I"m going to be treated like I'm wasting her time.  I've always been pretty good to speak up to doctors and tell them what's going on.  The hospitalists are always sure nothing is wrong because I don't wheeze-never have-so they try to blow me off.  I've gotten really good at blasting them about it and TELLING them exactly what goes on with me, that my asthma is a different type and I know how I'm supposed to feel.  They usually do a step back when I tell them exactly what my peak flows generally run, what my current o2 sat is, what meds I've taken, what the dose is, exactly what the protocol is that the pulmo set for me, that I know when to add what meds etc.  I had to get loud enough one time to even tell them I knew I hadn't gotten some of my meds in the hospital because I could tell them exactly what they tasted like and exactly how I would react to those meds and I knew darn well I hadn't gotten them!   Respiratory Therapist lost her job over that one-albuteral 7-8 hours instead of every 3, the stat order took her 5 hours, never got 3 of my meds-I left the hospital worse than I was when I went in and less than a week later, was re admitted in REALLY bad shape.

    I don't mince words or candy coat things when it comes to doctors and what I need.

    I do have a new PCP group that I want to go see but right now, I'm a floater until my new office opens mid-May so I'm all over the county and it's difficult to have time to go see them.  I have not had a down day where I wasn't running from one clinic to another literally all over the county-some of them almost a 2 hour drive-in working on 8 weeks now.  I've ended up being the "cleaning lady" for my current employer-whenever someone is let go, quits or just isn't doing their job, they send me to clean up the mess they left.  It's stressful, but I love it.  This new group has a super reputation on-I know all of them-AND they are opening a clinic across the parking lot from my new one so they will be super convenient.  They do virtual office visits-including weekends and holidays-and have 4 hours of sick call a day where you don't even need an appointment.  I need to get established with them but can't manage to find a free second to do that.  I finally got a new, good GYN that I am thrilled with and if I can get in with the internal med group and then find a decent pulmo, I'll be thrilled.

  • Shea

    That sounds like a great clinic for your busy lifestyle. I love that you are knowledgeable of your peak flows and o2 sats… and on your a-game with your medications! I am going to try to keep all my info like that straight… I know my meds but not my peak flow/o2 sat.

    Historically, I have a hard time speaking up to doctors and hospital staff sometimes and explaining to them what I think is going on… part of that was I couldnt make connections of my triggers and the other part was I put too much faith in them that they could just figure everything out, but I have come a long ways from where I used to be.

    I think being able to throw out your numbers to them is a good way of getting medical staff to understand your condition. Also, knowing how to describe your symptoms is something I am working on. I pick up on what people say here… things like "boot fuzz in my lungs", or feels "like someone is stepping on my sternum", for me it back tension and shoulder tightness from trying to pull breaths in, and not being able to get all the air out of my lungs without pushing hard through a wheeze, being awoken by wheezing, stuff like that.

  • Pljohns

    Shea-I think knowing how to tell them how you feel and what's going on is super important and it's frustrating when they don't understand what you're telling them.  I have NEVER wheezed-except the time before last when I was put back in the hospital after being out a week-I had never wheezed so I didn't know that's what it was.  All I could tell them was my chest was rattling-like the croup we use to get as kids.  Try explaining the croup to someone that is in their 30's-they have no idea what it is and look at you like you are nuts for saying your chest is rattling.  Once she listened and announced it was a wheeze, now I know!

  • Kathy P

    All great advice!

    I'm very fortunate that my doc knows our family and will listen to me when I say something is just not right. But if I have to see an on-call doc or someone else, they don't know our quirks and might not treat things the same way and it will feel like a wasted appointment. 

  • AS

    Pljohns & Shea you are amazing – I totally agree that you really have to advocate for yourself on all fronts. Part of my issue was that I ended up between doctors right as the bronchitis hit me and it took me awhile to get into my new doctor – in the meantime ended up having to go to Urgent Care twice, which means I saw 2 different people and didn't really know what was going on with me because I never made the connection to asthma, and then I had different prescriptions along with reactions to a couple of them. Once I was with the new doctor I decided to call her every week until I was feeling better just to check in and ask her the questions I was still having. After a few weeks she farmed me out to her nurse practitioner, who spent an hour with me and then referred me to an allergist, who I will see this week. I know my doctor probably thought I was overreacting but I don't care because I know what my normal is, and this isn't it. I'm just hoping it's not my new normal. As far as other people, my family is very understanding and luckily most people I know are pretty understanding, if not knowledgeable. I did ask my boss to change my office for next year because it is in the basement of our school and there are all kinds of exposed pipes and dust – I told him it is making my asthma worse and he said he will change it for next year. I am coping for now – sometimes we go out in the hallway to work – I can make it to the end of the school year since I am not at that school every day. I am glad to see that you are able to keep up a busy schedule, Pljohns, because that has been my biggest concern – I'm a teacher (I travel between buildings and work with small groups of kids) and it takes a lot of energy – I have had to really decrease my other (outside) activities just to make it through my school day. At school people understand asthma and allergies pretty well because we have all kinds of kids who need to use inhalers and/or have severe allergies (as well as other medical conditions). It's also nice to know that there is a nurse on hand in case there are any immediate issues. Also, as Shea said, the more educated we become ourselves, the better we are able to communicate with the doctors and also call them out if we feel like there is a disconnect or something isn't working. This website and all of you have been so helpful to me as I try to understand this condition and learn all of the information that I need to know. 

  • Jen

    AS – How much longer do you have until the end of the school year?

  • K8sMom2002

    PLJohns, Shea and AS, you ladies are amazing! You each have overcome lots of challenges! 

    Primary care physicians and allergists and pulmos are invaluable when it comes to managing asthma. And the chemistry — the rapport — between you and a doctor is so important. I've come to believe that there's a doctor that's the "Goldilocks just right" for each patient. 

    But communication — honest communication — is so important. A doctor can't help me if he or she doesn't know what's going on.

  • Pljohns

    Well-after a 3 hour mediation session and settlement, I now fully understand WHY it is so important that you speak up for yourself.  if I had done that with my former employer, things might not have gotten so bad.  Now I have to undertake the huge effort for me to learn to not try to hide my asthma but to speak openly about it to people, especially employers and to be OK with it yourself.  That is something I struggle with because I've had such terrible reactions from family/friends but I have to work on it-I just have to.

  • K8sMom2002

    PLJohns, it stinks that your family and friends have not been supportive … but that's them, and not you. for you realizing that you can speak up for yourself!

    I like to try to "re-frame" things so that they lose their power to sting me. For instance, when a car pulls out in front of me, I make up a story of how they're late for work after having a kid up sick all night, and they have an ogre for a boss.

    So in that spirit, could it be that your family and friends are neck-deep in denial and they don't want to admit that you are as seriously affected by asthma as you are? 

    A chronic illness is a loss, and all losses have to be grieved, not just by you but your family and friends as well. Part of that grief process IS denial. It stinks, but sometimes family members do get stuck in denial. 

    Another thing to consider is what I call the . People tend to think of themselves being caught in a spotlight, where everyone else notices every little thing that is different. 

    I've felt that way myself at times … so it was with a great deal of interest that I read about a study where college students were asked to wear a Barry Manilow concert tee shirt (apparently that's about the most humiliating tee shirt that college students could be asked to wear.) They then were told to report to a room at a certain time — and that happened to later than everyone else. 

    Afterwards, the scientists asked the tee-shirt wearer how many people had probably noticed the tee shirt, and of course the poor subject was certain that everyone did.

    But when the other people in the room were asked what the person was wearing, half of 'em couldn't say. They really hadn't paid any attention to what the poor guy was wearing. 

    My DD has a food allergy to corn AND a rare bleeding disorder. Between the two, she can definitely stick out. But we've found that if she calmly states what she needs, people tend to accommodate, and it settles into the background. Also, the more familiar her friends and teachers are about her food allergy and bleeding disorder, the less attention it commands. It's just "how it is." 

    So it may feel like a bright spotlight is on you at first, but you won't need to keep repeating the story over and over. And hopefully not everyone will be like the bad apples that have tripped you up in the past.

  • Pljohns

    Thank you so much-I needed to hear that and yes, it does feel like a spotlight is on me.  Every time I've ask for help in the past or said I couldn't do something, it has been met with huffs and grumbles about how they would now have to find someone else to do it because I couldn't.  Unfortunatly, I have no time to take care of me-I always come last, always have and always will.  DH has health issues and tends to be a drama king about them-none of them are huge, but he always seems to be complaining about something.  The house, kids, yard and bills have always been my responsibility and I've always worked full time.  I've always had jobs that depended on me to be 150% of me and no room not to be.  My family, then work comes before me and that's just  me.  There is ALWAYS more to do than there is enough of me to do it but I have always dug out.  My MIL-terrible ungrateful person-has 3 boys and it's so bad the boys don't want anything to do with her so they have dumped her on me over the last 25 years and my only sibling only talks to my parents when he wants something so I have them as well-one set is 12 hours away and the other 6 and none of them in good health.  I'm the only one that calls them regularily to check on them and helps whenever they need it as much as I can from this far away.  

    I have to learn now, to step back and take care of me and at 53, that's a lot of life to undo that habit from.  My new job is a lot less stressful although they have figured out what all I can do and i'm now the go to person, I've backed off the MIL issues and told her to call her other son's (DH and I have been the only ones to do anything for her in 20 years)  and have backed off doing some things for my parents.  It was hard to have to tell my Mom that I don't have time to make her 300 cards a month but I'll send as many as i have time for.

    It's a learning curve that I have to figure out I guess and no one can do it for me.

  • K8sMom2002

    Hugs … that is hard. You may have to do most of the "work" on you, but that doesn't mean you can't have some assistance. There are counselors out there who have experience in helping people adjust to diagnoses of chronic illnesses, because it IS a loss. 

    I have a couple of sayings that I use to remind myself of my boundaries.

    • Every problem has an owner; who owns the problem?
    • Expectations minus reality = disappointment. 
    • Put on your own oxygen mask first.

    I think it's time to gently "re-home" the problem of your MIL. Your DH is a grown man and his mom is a responsibility that should be shared by your DH and his siblings. 

    I know how it is with southern boys … just this AM, my DH commented, "Oh, you go into work late today. I guess that means you can mop the kitchen floor because it really needs it."

    Uh, bud, no, YOU get off early afternoon, and that steam mop handle will fit into your hand as well as it does my own.  

    Training southern boys can be done … they may never be mistaken for enlightened men with no gender insecurities … but they can be trained to unload a dishwasher. Or mop a floor. Or at the very least … to learn to live with a dirty-ish floor for a day or so longer just so that they can be taught that their wish is not my command. My DH? He married me, not Merry Maids!

  • Pljohns

    I know exactly what you mean.  MIL is such a pain that none of her kids live around her and the other 2 boys said she would NEVER live with them-well in Nov when her 2nd husband became abusive (threatened to blow her head off), we got her out of there and to safety but neither of the other 2 would let her come to their homes.  She had no where else to go so we opened our home to her.  Our house isn't big but DS gave up his room and we gave her every spare inch of room we had-and you know what-it wasn't good enough.  She decided to move back where she lived and promptly dragged everything we had done for her through the mud.  She flatly lied about us and the other two brothers got in the mix and it got ugly.  Long story short, they said some VERY uncalled and ugly things about me and DH told them where to get off at and hasn't spoken to them since and says he never will.  We gave her all we had and it wasn't good enough.  My standard answer for her now when she needs most things is -call one of your sons and not DH-we have done enough.  She doesn't like it and neither do they but it's life.  

    DH does help-more than he use to-but the bulk is still mine to do.  I am lucky that he never complains about things not being perfect and he understands about my asthma-doesn't help him to do more, but he at least understands when I can't.  Our 2 sons are AMAZING-they help me SO MUCH-they do laundry (theirs and ours) daily, fold it and put it away, keep their rooms clean, handle the trash, clean 2 bathrooms (both of theirs) and will load and unload the dishwasher and will help with the cooking.  they have both helped start enough roasts' now that all I have to do is ask them to start a roast-don't have to tell them anything else about seasoning, temp or anything.  I am SO going to miss them with they move out in a few years!

    My Dad depends on me to do for my Mom-she is wheelchair bound and he feels like when they visit, that he takes care of her every day so now it's my turn.  I get that but he is a TRUE southern man-where he gets done with something, that's where it stays until I pick it up.  He won't help with ANYTHING.  i try to get Mom out while they are here but I literally have to pick her up out of her wheel chair, put her in my car seat and then reverse when we're done.  I'm usually exhausted when they leave but it's the only time she can get out.  Until the last hospitalization-the super bad one-Dad wouldn't even consider me having asthma.  the last one scared him and now he's all over helping me with things-except around the house when they visit.  

    Everything will work out-I just have to MAKE myself comfortable with the fact that I have asthma-that's never going to change and I have to deal with it and not be afraid to let others know about it or take care of it in front of others-do what's best for me.

  • K8sMom2002

    Goodness, that was a tough situation with your MIL, and an equally tough (but in an entirely different way) situation with your mom. I hope that the other brothers are helping out with your MIL!

    You definitely have the right idea of making yourself comfortable with all these changes … The key for me in times like that was finding something or someone to help me find my way when I was uprooted from everything that was normal and familiar and plopped down in a spot where everything was different.

    It's so good that your sons help out! That's terrific — and you know their wives will thank you!  

    Hopefully the other men in your life will fall into line and gradually help out more. One thing that I might do is start practicing those "I need" statements:

    • "Dad, I need some help getting Mom out of the car. If you're not able, can we hire a nurse or an assistant to help us while you visit?" 
    • "DH, I need to rest after cooking. Can I get some help with (laundry, dishes, grocery shopping, errands)?"

    One of my biggest issues and stumbling blocks is that I come up with a solution and expect other people to agree that it's wonderful … but a better strategy is for me to state the need and then allow other people to help meet that need in a way that works for them, too. 

    Oh … and lowering standards — DH will now help with the dishes after supper, but I have to bite my tongue and let him do it on his terms. It may, for instance, not be instantly cleaned up, or he may leave a pot in the sink for a bit. The towels may not get folded just like I like them. And he absolutely drives me bat crazy to watch him mow the lawn — no pattern, just zips here, there and everywhere. I can't look.

  • Jen

    k8smom – I need to adopt that stance with letting dh and the girls help out with things like dishes and laundry.  

    pljohns – It does sound like your dh and sons are pretty helpful.  If they could take over even one more task each, could that help you carve out a little self care time?  

  • K8sMom2002

    Okay, so who's taken a baby step today about asking for help or sharing how asthma makes it hard on us? 

    I have to admit that I haven't. But seeing this thread is encouraging me to do a better job of taking care of me. 

  • Pljohns

    I actually have!  I will be moving into a new clinic but the opening date keeps getting pushed back-construction delays-a VP was here earlier for a meeting and I explained to him that I keep asking the date because I have to beef up meds DRASTICALLY starting 3 weeks prior to being in the fumes.  I don't know if he listened or not, but I told him.

  • Shea

    AS, thank you, and I am sorry you are experiencing the doctor-bounce and the newness/adjustment period in learning about your asthma. I am glad you are finding this site helpful, I surely do as well. It is interesting hiw you say say your schools are understanding and well-equipped fir asthma and allergies, because the ones I have had experience with were not. But, more and more are and that is due to self-advicating parents, students, and employees like yourself, so I am glad you were abke to speak up and secure a better work environment for next year! 

    PLJohns , I am interested to hear how the mediation/settlement turned out, I will check out the other topic to see if you wrote more about it there, but no matter, the big thing is: you pursued it and followed up and I admire that so much! It takes steps, talking with people, sometimes they are baby steps and sometimes they are strides. (Hospitalizations suck but they do lead to strides with family, I have noticed, but I obviously try to avoid that.. it took me nearly dying to take MYSELF seriously, so I get denial, and it is my worst enemy, I still am seduced by its charms, but as soon as I realize I am doing it, I stab that snake denial in the face!!! lol).

    Awesome about the mention to your boss about the asthma, I think its a great first step. If you are not sure if your new boss heard you and you are having health issues… You know what bosses listen to… written email with doctors note attached. That would be my goal to get to my boss. Something like "i see -so and so- for asthma, i currently advise him/her to minimize exposure to -whatever- by (keeping office space away from it, or having a hepa purifier in office, or minimuze exposure and if exposed able to wear approved mask, or please give two 15 minute break two times a day for nebulizer usage)… I dont know– those are just things that came to my mind but you and your doctor will know your case better– I say email because it can be tracked, and they know it, so it encourages them to respond professionally and if they dont or if they try any shady stuff, you have that as proof.. hopefully it wont come to that, but if it does you have defense. Because no one deserves bullying or punishment for asthma, everyone deserves to breathe, and its a pretty big priority.. breathing… it doesnt get much bigger! 

    I had a really busy day yesterday… I ran myself too hard, did too much. I knew it as I was driving home. I had some obligations I did get myself to today but then I took the rest of the day off. I spent a lot of today just resting. I actually took a nap– I never take naps.. literally cannot remember the last time I took a nap during the day. It was probably 10 minutes before my 5 year old woke me. But it was good, and resting as been good. So that is a step for me.

  • Jen

    Naps are good, Shea.  Sometimes you just have to listen to your body.  I used to nap all the time, but don't do it too often anymore – or when I do, I typically only can sleep for about 20 mins or so.  Today I must've conked out for over an hour this afternoon.  It must've been all of the running around yesterday afternoon and evening – speech therapy for ds, then his special needs gym class and then a lacrosse game for dd3.  

  • Pljohns

    Jen-hope you are better and rested today.  I think we all have tendencies to push ourselves more than we know we should.  I'm the worst at stopping the world for me-it pretty much takes me landing in the hospital for that to happen, but I'm trying. I think we all still maybe try to do what we were able to before we were diagnosed-maybe thats a part of us all that still aren't willing to compromise or give in to and we should-we have to take care of ourselves.  Hope you have a super, restful weekend!

  • Jen

    Rested?  Eh…not as much as I'd like.  Part of that is that I have a habit of staying up later than I should.  The wakeup time during the week doesn't change, so I really need to work on that bedtime thing.  It's hard, though, since late at night is often when I get my "me" time.  In general, though, I am pretty good about not pushing too much. Wednesday, though, I just didn't have much of a choice.  All of that driving/obligations just happened to fall on that day.  I made sure to not push myself too much yesterday.

    Weekends?  Often no rest for the weary as that's when dd's 2 and 3 have lacrosse games, etc.  DD3 has a game tomorrow with her rec team.  DD2's rec game got cancelled, but her club team has practice tomorrow.  Still…I get to sleep in, so I'll take it.

  • K8sMom2002

    PLJohns, on you advocating for yourself! I'm with Shea — an email is a great way to do it so that you have it in writing. 

    You can even follow up the meeting with a "memorandum of understanding" to outline what you heard your boss say. 

    Shea, naps are a good way to re-charge if you have the chance. You know, in some countries, there's still a culture of the siesta or the mid-day break where you have a long lunch break to recharge. 

    Jen, I hear you on bed time being a hard one for me to be disciplined about. It's hard when after a long day, I'm faced with a choice of going to bed or watching a DVR'd TV show … especially since DH will sometimes randomly delete things if the drive gets fuller than he likes. 

  • Pljohns

    OK guys-I"be tried to find something that I can discretely wear that doesn't SCREAM-I have asthma-and couldn't seem to find anything.  I'm WAY to old to be wearing Tshirts outside of the house or a quick trip to WM that says things on the front so-I designed a jacket on Zazzle last night-when it comes in, I'll take a picture and post it-it is a gray ribbon for asthma awareness and written across the center of the ribbon says "invisable disabilities".  The jacket is dark blue with the gray ribbon and white writing.  I REALLY like the way it turned out.  I went ahead and got a polo type shirt as well. On Friday's we can wear jeans to work so the shirt will be perfect for my Friday wear-especially during May with it being asthma awareness month.

  • Shea

    That sounds so awesome!!!! I want one!!! I did not know that May was Asthma Awareness month, but that is great to know. Today is my birthday. And as such, I was wondering what to wish for. And, as usual I considered wishing to win the lottery. And I thought, what would I do with the money? And this time I really thought I would make allergy awareness programs and advocacies a serious priority. I would fight for rights for those with allergies and asthma and make more safe places that were catered toward those with allergies and asthma: Social spaces, work places, schools, community centers, modes of travel… all with requirements that work for those with asthma and allergies (and not that just say use more medications and wear uncomfortable masks), no I would make every part of these spaces promote health and healing by using safe, non-irritating, earth-friendly chemicals, and building materials that do not off-gas, I would use a lot of bamboo, and every building would have outdoor gardens that have plants and trees that are allergy-friendly. …..But I never bought a lottery ticket because by the time I left my parents house it was late and my son was asleep in the car and I couldn't wake him and drag him into a gas station for a one in a zillion chance of winning the lottery.. he was too cute and I was too tired. Maybe another day.     

  • Pljohns

    Shea-HAPPY BIRTHDAY!!!!  I hope you had a super one-you certainly deserve it.  You are truly an amazing person to wish what you did for your birthday.  The world would be such a better place if people thought of others instead of themselves.  It would in turn help us, but would make us all better people and a better society.

    May is asthma awareness month.  I have a grey pin-exactly like the pink lapel ones you see everywhere for breast cancer awareness, that I wear every day during the month of May.  My jacket/shirt should be here by May 4 so I can wear them the first Friday of the month.  I've posted here that I tend to "hide" my asthma and don't want anyone to know that I have it so wearing a shirt that screamed that just wasn't me.  I knew I'd never get out of the house with it on.  The design turned out perfect-it doesn't scream anything and people are use to seeing the ribbons for various things but I thought the wording said it all-"Invisible Disabilities"-that's what a lot suffer from-

    Hope you have a wonderful day today-

  • Shea

    Yes, I love that too: "Invisible Disabilities" and a subtle pin.. It is perfect. And thank you for the happy bday wish  

  • Kathy P

    AAFA is gearing up for and has some great things being announced later this week! Including some new awareness items items like silicone bracelets and t-shirts! Watch that page and for announcements!

     @Shea

  • K8sMom2002

    A belated Happy Birthday, Shea! I think if people were judged winners of lotteries by what they would do with the money they won, you'd be hands down a winner! 

    And PLJohns, can't wait to see your asthma awareness gear! 

    Kathy P, thanks for giving us a heads up on the awareness items … can't wait to see what AAFA has picked out.

  • AS

    Shea, hope you had a fantastic birthday! I love your ideas about awareness and advocacy. Pljohns, can't wait to see your photo!

  • Pljohns

    Well-the shirt is finally here and I am very pleased.  The shirt is good quality and it's something I will wear and not try to hide my asthma.  Very subtle but very strong still.  The jacket is due in this week but you all wanted to see the picture so here it is.

    Edited to insert photo into body of reply – CRR 5/1/2017

  • K8sMom2002

    Ooh, I like it, PLJohns! Very nice shirt … and I'm proud of you for finding the courage to speak up about asthma! I can't wait to see the jacket!

    And AAFA has also just made — just in time for Asthma Awareness Month …

  • Shea

    Love the shirt! I wish there was more awareness about allergies and asthma that is triggered by furry and feathered pet dander… I feel like it is taboo because people are sensitive but after my whole situation I think awareness is necessary and the site has stuff for food allergies, has stuff for molds pollens and cigarette smoke, but I haven't seen anything about dander and it is huuuuge in my opinion, as it is common and so hard to keep a pet and have allergies, I swear a lot of websites repeat the same bad info, like keep the pet out of the bedroom.. That does not work omg. And purifiers… Not if the pet still lives there.. And bathing the pet, yeah, 3 times a week it'd need to be done to show any results and even then typically not enough. And what happens when you are daily exposed to something you are highly allergic to.. You get asthma, you get high eosinophils, you get eczema, inflammation, sinitis. Its not a loving relationship with a pet if its hurting your health. Its not good to suffer through or make a relative suffer. More awareness for dander allergy please!!!!

  • K8sMom2002

    Shea, hugs … It's got to be really frustrating. Around here we are lucky — only SERVICE dogs (not comfort or companion dogs) are allowed in stores and public places. While neither DD nor I are nowhere near as sensitive to dander as you are, I have learned from you how much it can bother a person. I hope people will understand one day how sensitive some asthma sufferers are to pet dander.

  • Pljohns

    Hugs Shea and I agree-maybe one day people will realize how much some people have to pay for others taking their pets along for the ride.

  • Shea

    AAAAAnndddd I almost just died … Omg omg omg…. So I decided to quit composting forEVER about 5 minutes ago. I was just going to add some vegetable scraps in the bin when I noticed my little screen barrier that I put on the top was messed up, so I pulled on it to fix it, and OUT POPPED a RAT!!! ( Or a mouse, something with cute scared little eyes and a freaky tail… ) Anyways my whole life flashed before my eyes and I had this realization: I am NOT a farmer. I cannot do it. I cannot compost, I am allergic to mold and scared of worms and deathly afraid of rats ever since my school made me read 1984. So screw you guys (society, the people who say I should backyard farm and compost and raise chickens and homestead, lol), I am NOT doing it… This is not what I was raised to do, it is not what I enjoy doing, and it currently became something I refuse to do. So I am doing a breathing treatment from having an asthma attack after the shock, lifting the bin to throw out, because well, this was an important 2 year long life lesson…. I am NOT a farmer, NOT a worm composter, and this self-imposed struggle is no longer worth it. "And she lived happily ever after. The end."((And, yes, I know Cinderella befriended the rats and made them clothes whatever turned them into horses to pull her carriage, but I am not Cinderella… I more of a lizard person… So they can pull my carriage)). Anyways, today my asthma spoke up for ME, lol. Gotta love these little glimpses of self-realization. 

  • Kathy P

    Eek! That would have freaked me out too! Totally reasonable to realize something is not right for you.

  • Shea

    I am researching new ways of keeping my garden soil good and putting my kitchen scraps to good use. It involves burying kitchen scraps (probably frozen until you get enough) 1-2 feet into one section of the food garden. In a few months they will all convert into good vitamins four your soil and plants, and so next season that is where you plant. So THAT is my new plan. 

    More details on it at the link below if anyone is interested:

  • K8sMom2002

    Oh, my goodness! That WAS awful! I have a compost bag indoors, but I've had to limit what I put in it after potato peelings created quite a mess by attracting flies. 

    I like the idea of freezing (well labeled of course!) veggie peelings — no insects or pests! And then I can toss them into the compost outside. Thanks!