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new to asthma

hi all, i was diagnosed with asthma ten year ago and have not needed an inhaler since i was first diagnosed. i have a life time of sinusitis. since the beginning of october, i have had a horrible time with my asthma. i have seen my pcp and and allergist. two weeks ago i was started on a steroid bronchodilating inhaler. i also finished a zpack for sinus and ear infection. i have been on steroids three times in the last 8 weeks. nothing has helped. i have the constant feeling of hands squeezing my lungs. ear infection remains as do symptoms of sinus infection. i am limiting my activities because i cant breathe. haven't excercised since October.   and i am becoming totally depressed because i can't live my life. i have another appt with the allergist after christmas. 

i am so new i don't know what to do.   where do i turn? is this normal?  thanks for any help.

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  • Kathy P

    Welcome Becky and  on all the recent issues.

    Did the zpack seem to clear up the sinus / ear infection? Or is that still flaring? Infections are a huge trigger for me and it often takes me quite a while to pull out of an asthma flare if I can't get completely rid of the infection.

    Did the steroids help at all? Or did they help a little, then your asthma symptoms returned/got worse when you stopped?

    Is it your allergist or PCP who would normally manage your asthma? Or neither since you haven't had issues til recently? I wouldn't wait til after Christmas if you are still having issues that are limiting your activities.

    Here are some resources to check out:

    • – at the bottom of this page, there is a guide to managing asthma that I recommend downloading (it's a free PDF).
    • – this page has information about different types of asthma medicines and what each does.
    • – has your doctor given you a plan to know when to take each medicine, when to call if symptoms are getting worse and when to seek emergency treatment.
  • Dar007

    Welcome! I am new here too. It is a great community and you will find lots of helpful people and info here. 

  • beckyg

    hi kathy, thanks for your response. my pcp generally follows me for everything but because i've had no issue with my asthma, we have rarely talked about it over the ten years since i was diagnosed. i am quite certain that all of this started with a sinus infection which has still not cleared. zpac nor steroids have done much. i still wake up with a headache, my ears still hurt (not a horrible amount but certainly not comfortable and they cause me to take ibuprofen every day), my nose still runs a great deal. so in my eyes, this is not cleared up. i am wondering if mds can test for an organism? maybe the antibiotic they are giving me isn't the right one. i just really getting depressed with the change in my life style this has caused and i'm not sure how to get this across to doctors. the allergist said "well we will try this for  month and see how it goes". and i know this is in some ways a lets try and see thing, but in the mean time how do i live my life?  thanks for whatever help you can give me.

  • Kathy P

    It might be time to ask for a referral to an ENT. My son was sent to an ENT by the allergist when we couldn't get his sinuses cleared up. The ENT ordered a CT scan and did a culture of his sinuses. 

    It's so frustrating when things aren't working and have to just keep trying different things .

  • LK
    beckyg posted:
    hi kathy, thanks for your response. my pcp generally follows me for everything but because i've had no issue with my asthma, we have rarely talked about it over the ten years since i was diagnosed. i am quite certain that all of this started with a sinus infection which has still not cleared. zpac nor steroids have done much. i still wake up with a headache, my ears still hurt (not a horrible amount but certainly not comfortable and they cause me to take ibuprofen every day), my nose still runs a great deal. so in my eyes, this is not cleared up. i am wondering if mds can test for an organism? maybe the antibiotic they are giving me isn't the right one. i just really getting depressed with the change in my life style this has caused and i'm not sure how to get this across to doctors. the allergist said "well we will try this for  month and see how it goes". and i know this is in some ways a lets try and see thing, but in the mean time how do i live my life?  thanks for whatever help you can give me.

    Becky,  I am sorry you are having such a battle with so many things right now!    

    It is sometimes difficult to get across to our doctors just how much we are being affected by our medical conditions.  I know for myself, I, out of habit, try to be upbeat and more cheerful when I am around other even my doctors and nurses so it is a little hard for them to realize just how much I have had to change my lifestyle to live with asthma.  I have tried lately to write down a short list of questions and concerns before I go to the doctor appointments.  This helps me to not gloss over how I am actually doing.  I don't want to be overly dramatic but by the same token I have decided that I need to be clear in what I am dealing with so they can give me the best options.

    Not saying that you are not telling your doctors everything you need to.  Just what I have learned about how I interact with my health care team.

    I would strongly suggest to you that since you are still having so many health issues and they are having a major impact on your daily life that you at the very least talk with your doctor and make clear exactly what you said here.  As Kathy said, maybe even ask for a referral to an ENT.  Might be a good idea to talk with your allergist, too.  Never hurts to get another opinion from another specialty.

    Please let us know what you find out and how you are doing!

  • K8sMom2002

    Welcome, Beckyg … I know the feeling of having asthma that behaved and didn't bother me … until one day it didn't. It's really frustrating not to be able to take your breathing for granted anymore. 

    Like Kathy P, upper respiratory infections are big triggers for me. There are other triggers for asthma as well. 

    I love the idea of reaching out to your allergist or an ENT, especially since you've been through several rounds of steroids and at least one round of Zithromycin. 

    Another thing: for me, it took a long, long time for my lungs to recover from a major flare of asthma and pneumonia in May of 2016. I had to be patient and listen to my doc and work to strengthen my lungs. 

    There were changes I had to make in the short term — exercising outdoors wasn't an option because of allergic triggers and the reactiveness of my lungs … so I began walking indoors. That really began the process of getting my lungs back to baseline. 

    Another help for me to exercise was to get a good pre-exercise plan in place, since I have . Could you talk to your doctor about what you can do to make exercise easier for you? For me, being able to begin exercising again helped not just my lungs, but it also helped my overall mental outlook.

    What other triggers set off your asthma?

    And I just want to let you know … you're NOT alone! We're here with you, and you can vent any time you want or need to.

  • Melissa G

    Hi Becky! Just want to welcome you to the AAFA forums!  You have already gotten lots of wonderful advice and resources. Sending you lots of !

  • Brenda Silvia-Torma

    Hi @beckyg Welcome to AAFA! I'm so glad you found us!

    My asthma changed this year too…it went from being a problem once every 2 years to being an everyday issue. A bout of bronchitis triggered my persistent mode. Now my triggers also include poor air quality (ozone and particle pollution). Before this summer, I was never impacted by air quality but now I check it before I leave the house…If it's yellow or higher, then I wear my mask and I don't have any problems. Do you know what your triggers are?

    Here are a few more AAFA resources that will explain more about the need for an asthma action plan and management plan.  

    • Blog Article:

      Can you call your doctor and explain how you're feeling and let him/her know that you are struggling?

      Brenda

    • Brenda Silvia-Torma
      Dar007 posted:

      Welcome! I am new here too. It is a great community and you will find lots of helpful people and info here. 

      Hi @Dar007, Welcome to AAFA. 

      I'm so glad that you've found this community to be helpful and supportive! How are you doing?

      Brenda 

    • beckyg

      thanks guys for all the help.   i admit that i do lighten up my symptoms when i am at the doctors.  is that a woman thing or do men do it too? we cant make anyone uncomfortable…lol.   i don't know what my triggers are. allergist says we will work on that soon enough but the first thing she wants to do is get the inflammation under control which is what she would do regardless of what my allergies are.

       i do feel a little better today. or i did until i went to the grocery store. one of the check out ladies had on some very harsh perfume. i immediately had to reach for my inhaler. after this experience i did ask to speak to a manager. she was very kind as i explained to her that they might look at asking their employees not to wear fragrances. as a woman with alleriges/asthma i think that should be a policy everywhere.  i wasn't mean just want to spread that word.   am i getting on my high horse or do others here speak up like that?   

       

       

    • Brenda Silvia-Torma

      I think what you're doing is great!  Advocating on behalf of yourself and others who have similar issues is NOT always comfortable…and not always successful. But it sounds like the manager you spoke with was receptive to what you were saying. You never know, she might be thinking to herself, "my aunt gets headaches from perfume…I really should change our store policy".  I'm keeping my fingers crossed for you!

      I've tried to get my gym to stop displaying latex balloons…with no luck. So, now when I walk in there and see a non-mylar balloon arch, I turn around and walk out…and can't go back in until the balloons are gone. Recently, I asked the staff member at the front desk if the balloons were latex or not, he said "Oh yes, they are not latex…but I wouldn't get up close to them and breathe them"

      If they were not latex, I would have hoped that the manager (who I talked with at length about this issue) would have emailed me, "Hey Brenda, just wanted you to know that we ordered a balloon arch but it's the non-latex kind". That would reduce my anxiety and would make me feel welcomed. The young man at the desk was so nonchalant but did add the whole "not getting up close and breathing the smell". That gives me no confidence that they are actually latex free.

      What I'm trying to say is that it takes a lot of effort to advocate changes in someone else's policies or procedures. I'm proud of you for making that effort–regardless of the outcome. Perhaps another person will complain to the manager about the same problem next week…and then it's two people who have shared their opinions. There is strength in numbers!!  

      Brenda

    • LK
      beckyg posted:

      thanks guys for all the help.   i admit that i do lighten up my symptoms when i am at the doctors.  is that a woman thing or do men do it too? we cant make anyone uncomfortable…lol.   

       i do feel a little better today. or i did until i went to the grocery store. one of the check out ladies had on some very harsh perfume. i immediately had to reach for my inhaler. after this experience i did ask to speak to a manager. she was very kind as i explained to her that they might look at asking their employees not to wear fragrances. as a woman with alleriges/asthma i think that should be a policy everywhere.  i wasn't mean just want to spread that word.   am i getting on my high horse or do others here speak up like that?   

      Becky,  I like how you put it "we can't make anyone uncomfortable"  !  That's us!    

      Neither do we want to complain! 

      Glad you were feeling a little better today.  I have had to ask our grocery store several times to not put an overwhelming number of fresh flowers right at the front doors.  The strong scents were enough to knock a body over.  Not sure if my comments had any impact but you do what you can and if enough of us politely make those kinds of requests sooner or later things will change. 

      Good for you for being brave enough to say something.  

    • Melissa G

      Becky, glad you are feeling a little better! Yikes on having issues while you were at the store! Great job speaking up! Most people are so unaware of what fragrances can do to other people. 

    • Pljohns

      Becky-WELCOME!  You will find everyone here has a ton of great information and different experiences and suggestions but most of all, you will find THE  BEST support and people who really do understand what it's like to live like we have to. 

      I'm so sorry you having trouble and I think it's great that you said something to the manager.  I've tried to advocate for a perfume free work place but got told no way-if someone in particular is wearing something offensive every day, they will talk to them but otherwise, no way.  My boss started out very supportive of the whole fragrance free thing (pretty much anything with a fragrance sets my asthma off) and we had regular garbage bags, no air fresheners, always had fragrance free washing powders and cleaners-not so much now.  I finally gave up and have a drawer in my desk with MY STUFF in it in case I have to use it-laundry detergent, disinfectant wipes, hand soap etc.  Everyone knows i have it and not to mess with it just because we run out of something-I bought it with my own money and it's for my health that I chose to do so.  All of that to say, if we don't advocate for ourselves, no one else will either.

      It's a great idea to see about an ENT referral.  If your insurance doesn't require it, most ENT's will see you if you call yourself-they dont' require a physicians office to call or refer.  DH had AWFUL sinus issues for years-stayed on antibiotics and was never well.  They did a CT and found that he actually had an extra sinus cavity and that they were all full of infected gunk.  He had surgery, they combined the extra sinus cavity into the one that was suppose to be there and cleaned everything out and he's been infection free for 3 years now.  If he hadn't gone on his own to an ENT, he would still be having issues (his PCP thought she could fix everything and refused to send him to the ENT so he went on his own).

      Do you keep a journal of any kind?  A lot of us here do and just jot quick notes about the weather, symptoms, what set us off and things like that.  It took me doing that to figure out the only 4 triggers we've found (I have non allergic asthma) but i can look back at those journals and know what months I typically get sick in and that the weather is a major trigger for me.  without the journal, I probably would have never figured that out.

      I'm sorry you have to make so many changes in your lifestyle.  Please talk to you doctor honestly and frankly about them so they can help you figure out what's going on.

      So glad to have you on the forum!

    • Shea

      Hi Becky and welcome to aafa! (So sorry though that you are in the midst of a very un-fun time with asthma/allergies… I get that!!!)

      I just caught up on your post and I relate alot to what you said about having difficulty communicating symptoms to your doctor and them seeming to downplay. I really try to tell me docs too but they just seem to want a quick prescribe and next patient sometimes. They really aren't that supportive in dealing with the emotional and social transitions of dealing with the disease, and their "just try this" approach can feel frustrating. But it does give you a chance to at least try new medications and hopefully find something that starts to bring relief. This forum has helped me work through the things the doctors dont.

      I have a chronic allergic disease and at first I was rushing it or trying to force it to be over with already, but for mine I really had to make a lot of lifestyle changes and it helped me to really start focusing on repeating "I love and accept myself" right where I am now and I kinda mother myself with compassion and focus on NEW activities that I can do right now with these health issues, ( Like reading, learning to crochet, short walks around the block). Because although there are things I cant do that I used to, therecare lots of things I CAN do and having this experience (as unpleasant as it can be) is expanding me into new realms I may not have found before. This outlook has really helped me, so I just wanted to share it with you as you go through this. I also have learned a lot through this commu ity about things I can do (like improve my indoor air quality at home and reduce exposure to triggers) and that has made me feel more in control of my symptoms because before I felt very helpless… That pretty much is what depression is: learned helplessness– and asthma and allergies and the host of probkems they bring with them  can sure make anyone feel that way. But you aren't, and you will start developing a "spidey-sense" and learn how to maneuver during this healing process. Focusing on any small "I can" is often where I start.

    • K8sMom2002
      beckyg posted:

      thanks guys for all the help.   i admit that i do lighten up my symptoms when i am at the doctors.  is that a woman thing or do men do it too? we cant make anyone uncomfortable…lol.   i don't know what my triggers are. allergist says we will work on that soon enough but the first thing she wants to do is get the inflammation under control which is what she would do regardless of what my allergies are. 

      I think it's a universal thing for many folks … nobody wants to be seen as "that" patient. 

      But as docs have told me, they can't fix what they don't know about, and they assume no news is good news. 

      Love the idea of keeping a journal … figuring out triggers was a long and personal journey for me, one that involved me tracking when I had an asthma attack, and what I was doing right before it. It's not always possible to avoid your triggers, but even knowing that strong perfume is a trigger can help.

      Good for you for advocating! Like Brenda and Shea and Lynn have said, even if it doesn't get the desired result right away, you never know when the tipping point might be. Who knows … if it takes three people complaining to get a manager's attention, and you were the second one, then the next person might be successful. But that person wouldn't be successful if the first and second customers hadn't spoken up.

    • Dar007

      I am that way. When I go for a doctor appointment I always say everything is fine. The last time I went, I did bring up my eczema (this is a new gp since I moved here two years ago for work and never spoke to him about it), and he literally jumped up, totally focused on what I was saying when I brought my problem up. Lol I don’t want to be seen as complainer. I see how staff react at work. I heard him talking to the patient in the next room before coming into mine once. The door to the other room was open and my gp was walking out. This guy has asthma (from what I could tell by the conversation). And it was responding well the the medications. His conversation with the gp was so different than mine. Lol

    • Brenda Silvia-Torma

      DAR007, I'm glad you spoke up about your eczema and happy that he responded well to your comment! That is a good sign. 

      Brenda

    • IA-TXFisherman
      beckyg posted:

      hi all, i was diagnosed with asthma ten year ago and have not needed an inhaler since i was first diagnosed. i have a life time of sinusitis. since the beginning of october, i have had a horrible time with my asthma. i have seen my pcp and and allergist. two weeks ago i was started on a steroid bronchodilating inhaler. i also finished a zpack for sinus and ear infection. i have been on steroids three times in the last 8 weeks. nothing has helped. i have the constant feeling of hands squeezing my lungs. ear infection remains as do symptoms of sinus infection. i am limiting my activities because i cant breathe. haven't excercised since October.   and i am becoming totally depressed because i can't live my life. i have another appt with the allergist after christmas. 

      i am so new i don't know what to do.   where do i turn? is this normal?  thanks for any help.

      Hi Beckyg. I'm sorry your going through all that and I understand the depression and other thoughts that come along with all this. My thoughts are with you and there are many great people on here that have dealt with this and have managed it well on here that have or will offer you good advice. I'm kind of new to the more…chronic asthma thing myself. All I can say is there will be good days and bad days, you just keep going and do what you can until you get better. Living in the present and taking advantage of the good days has kept my spirits up. Hang in there and I hope you find improvement soon!