Navigation

Today, Asthma Won…

Some days you're the windshield, some days you're the bug. Today I felt like the cracked windshield covered in bug goo! There was just no upside!

Sorry I've been MIA – October was a whirlwind of travel. I think that put extra stressors and triggers on my body creating a perfect storm for an asthma flare. Things had been pretty stable and going well…so I probably got a little lax on being diligent in meds and precautions.

My chest was not happy last week and I did contact my doc to check in. Unfortunately, he was out of the office and I got another doc who is uber conservative. Took the wait and see approach and was starting to feel better. 

Today I went for a bike ride. It was immediately apparent that my chest was worse than I thought My lungs were burning and felt like a bear hug around my chest. After stopping several times to hack up a lung, I decided it was time to head back. I figured out the shortest, flattest way home. Now it's Netflix and nebs….and Prednisone

So today, asthma won. But it's only one battle and I won't let it win the war! Tomorrow is another day!

How do you regroup when asthma is winning? How do you reframe things to regain control?

86
294

Comments 86

  • Deborah Bartlett

    I have been having severe problems with my asthma today due to the weather. I keep a good frame of mind. Stay calm…do not panic..use common sense. I keep hydrated. I use my ProAir as needed. I come in out of the wind. I keep my head elevated when lying down.  

  • Kathy P

    Sorry you are having bad asthma day too Deborah

    Those are all great tips. I think the one that resonates for me is to keep calm and use common sense.

    I also learned today that my DH still doesn't fully understand the severity of things. As I was trying to assess the best way home, he's suggesting to stay in the route we are on but skip the big hill even though it's longer. Um no!

    I was channeling my inner Dirty Harry with "a man's got to know his limitations!" So standing my ground that I was aborting the ride was important. I'm choosing to reframe that into a win in my column because I didn't go into denial and continue just to make someone else happy. 

  • Melissa G

    Oh my Kathy! That is great you realized how you were feeling and got home to rest and do neb treatments! How are you feeling now? 

    When Rebekah goes into a flare, we have to get aggressive quickly and she needs to rest. Which she is terrible at doing. 

  • LK

    Kathy, I am so sorry you are having a flare, too!!    I am proud of you for sticking to your guns about heading straight back from your bike ride.  I, too, think I should keep doing something to please someone else even when I know it is not the wisest thing to do for me.  Hate to inconvenience anyone else!  

    Sorry to hear that the on-call doctor was so conservative with your treatment.  

    My DH does try to understand but just the other day he takes a spray window cleaner out to the garage to clean the inside of his windshield and asks if I want him to do my car's!!     NOPE!!!  How can he not remember that strong scents get me AND that the scent would be VERY strong in an enclosed car??    I know he was trying to be helpful but . . .   Had to ask him to just use water to clean my car's windshield.  

    How do I regroup??  This current flare has been keeping me company for over a month now and for awhile I was getting pretty down.  Well, it's taken me many weeks to be able to be able to not cry at the drop of a hat.   Was just tired of coughing, tight chest, lack of sleep, DH     and everything under the sun – you know what I mean?  Many tearful times, especially when on the pred and nebbing (is that a real word?      )  three times a day or more.  DH tries to understand but I truly don't think you can unless you deal with asthma personally.  

    You put it well when you say "when asthma is winning".  Sometimes it does win for a little while.  I think that is one of the hardest things to accept.  That it does win for the short term.  We can eventually get back in some sort of control but it feels like "the valley of the shadow of death" some days.  Not to put it too bluntly, but that is what it feels like sometimes.

    These forums have helped me a lot but the best thing for me is I found someone who also has severe asthma and she has turned into a very dear friend.  We have both learned it is okay to reach out to each other on those "I am so tired of this" days or nights.  Since we have each walked that path, we can lean on each other and know what will cheer the other person up.   There were days when I reached out to her several times a day.  She always found a way to cheer me up at least a little bit and usually quite a bit.  The other nice thing is we check in with each other often.  With severe asthma it is such a daily up-and-down breathing situation that it really helps.

    So, in a nutshell, I think we have to allow ourselves to feel down/sad about having a flare and we have to have the courage to reach out to someone who will understand and check in on us even when we don't feel like we want to be checked on.  

    Hope that makes some sense!  Hope you are feeling better, too!!  

  • Kathy P

    Ugh a month is way too long! I think this has really hit me because I was doing so well. I really think I waited too long to get super aggressive – partly denial, partly traveling. Not having time to do nebs, so relying on inhalers. I have a feeling it's going take the big guns to reverse things. That was why I started the pred today. I'm hoping a short blast will do the trick. 

    I was really looking forward to a ride today too. So frustrating! I'm not even going to attempt it tomorrow. Instead, I'm going to go to the farmer's market and shopping to look for tops. I have 2 more trips coming up and need to expand my wardrobe

  • Melissa G

    Kathy, I hope the prednisone has kicked in and you are feeling better. Enjoy your shopping trip! 

  • Michael Ray

    So sorry to hear and I hope you bounce back quickly.  Your description is all too familiar.  The smoke & poor air quality from the Northern California fires was a swift kick in the back side for myself and several others that would typically enjoy outdoor activity.  Even with the Advair, I plowed through a couple of Albuterol inhalers. 

    It made me think how fortunate I am to be in a position to have access to these meds.  If there are any programs out there that directly brings these types of meds to the less fortunately globally, I would like to know about them.

  • Kathy P

    Welcome Michael! Yes the wildfires cause terrible air quality. I'm in the Silicon Valley, so often things are burning north and south of me and it all gets trapped in the valley.

    There are some programs that help with medicine access here in the US, but they are grossly underfunded and most have been out of funds for months. One of AAFA's advocacy initiatives is access to health care which is access to doctors/specialists and meds. Have you joined our advocacy network – aafa.org/advocacy? 

    I'm feeling a bit better today. I had to drop the pred to 30mg since the side effects were just too harsh. I got maybe 2 hours of sleep…so the daylight savings extra hour was an extra hour wide awake and jittery! But I can feel the inflammation starting to decrease and my cough is more productive. So that's a good thing!

    I knew I wasn't going to be able to bike today, but I got lots of steps in. I walked the mall for 2+ hours. I did have to be strategic entering the department stores to make sure I wasn't walking straight into the perfume section! Then I went to the produce market and grocery store too. My tracker says I'm at 200% of goal! And I didn't use my rescue inhaler at all. So I'm putting today in the win column for me! :Clap:

  • Melissa G

    Welcome to AAFA Michael! Glad that you found us! 

    Kathy, very happy to hear that you are starting to feel better! I dread going into department stores…why do the perfume departments have to be in the front of the store where you enter? 

  • Michael Ray

    Take the win!!

    I'm in the Diablo Valley / East Bay – Martinez to be exact.  All that bad air from the fires just sort of settled in the valleys.  For us, the Napa and Solano County fires were particularly bad. 

    I just joined the Advocacy network – but would love to see any contributions I make go specifically to meds for those that need them.  No need to talk about the panic of being outdoors and realizing I forgot my inhaler "just in case" a car with bad exhaust goes by or whatever…  I feel for the unfortunate ones that have to go through that panic everyday because they have no choice.

  • Kathy P

    I've definitely become more diligent about keeping an inhaler close by! 

    AAFA as an organization has not historically had a program to help directly with financial assistance for medicine. But we do have a system in place to direct people to resources. 

  • K8sMom2002

    Ugh, Kathy, hope you're over the worst of the hump, and I definitely hope you get some more sleep! Is lack of sleep on its own a trigger for your asthma?

    Michael, yikes on the air quality issues! Have you figured out anything to keep your asthma inhaler handy? It must be tougher for guys than ladies, because guys don't usually carry a bag, and pockets these days aren't very generous.

    Deborah, hope your bad asthma day has turned around, too! What good suggestions you have for helping to ease a flare!

    Lisa, I so love what you said …

    So, in a nutshell, I think we have to allow ourselves to feel down/sad about having a flare and we have to have the courage to reach out to someone who will understand and check in on us even when we don't feel like we want to be checked on.  

    Until asthma is cured or perfumes and car exhausts are harmless to folks with asthma or family members truly understand … so glad I have AAFA!

  • LK
    K8sMom2002 posted: 

    Until asthma is cured or perfumes and car exhausts are harmless to folks with asthma or family members truly understand … so glad I have AAFA!

    Amen to that, Cynthia!!  

  • Pljohns

     Cynthia-

    We all have times when asthma wins but as long as we don't let it win long term, we stay in the fight, we will eventually win.

    Today, for the first time in a while, my asthma has won.  I don't remember if I posted or not, but my new pulmo upgraded (or downgraded-whichever it is) my asthma from moderate persistent to severe persistent uncontrolled-definitely NOT what I wanted to hear but it is what it is.

    I have no doubt that me ignoring-or not slowing down enough when I knew the signs-is what has landed me where I am today. I've not had much of a choice- I've had a business trip that involved flying and major weather changes from where I am to where I went, a MIL that has moved to town and run me ragged every weekend for the last month and every night in between-no time at all to rest, and a storm front moving in tonight.  All of those are major triggers for me and I'm almost down for the count tonight.  

    I've worked all day, will have dinner ready when Dh gets in and MIL has already told me she will be over tonight because she needs my help on something.  I would like nothing better than to go home, do a neb and go to bed.  I have managed 3 nebs today and it's not budging much so the pred is in order-and mine starts at 60mg-it's ugly and long and I hate to do it but I don't think it's going to turn around without it.  My numbers are good, but no voice, super tight and just can't breathe=time to bring out the big guns.   My job involves talking all day and that wears a body out when you can't breathe.

    the long and short of it is this-we will all have days that this ugly disease wins but we will also have days that we win.  It's important to have a support structure like this form and dear friends who truly do understand to get through the tough times.  Don't ever let go of the "win" times because that's what gets you through the "it won" times too.

  • LK

    Well said, Lynn!

    I am quite sure we are all guilty of pushing ourselves when we should heed the signs that we need to take a step back and do whatever we need to do, so know that you are not alone!!  

    When we are not is when we have the perspective to see the same situation in others and then we bring our "wisdom" to bear on the one who is, at the moment, the one who is overdoing it.  I think we each take a turn at both sides of the equation!  

    Guess that's enough philosophizing for today!   

    I am so sorry you are having such a hard time!!    Sending gentle HUGS your way!!  

  • Kathy P

    Well yesterday took a turn for the worse I wound up with a breakthrough infection and started antibiotics last night per the doctor. I'm still hitting the sinus rinses and those are really helping to reduce the pressure. I have to fly tomorrow, so I'm glad I've been able to keep things under control. I still have my appointment Wednesday, but may be able to get in Monday if things are bad. I'm glad I my doc is responsive through the messaging portal.

    @Deborah Bartlett - how are you doing? How about you @Pljohns?

    @Michael Ray - I've been watching all the red flag warnings through our area. I'm hoping there are no fires that start. Have you seen the tips for ?

  • Deborah Bartlett

    Thanks for asking how I am doing. I haven't been feeling my best. I have been following my plan, but this fall weather has not been kind! I may have to call and/or see my doctor. I hope you will be okay. Take care!

  • Melissa G

    Deborah, oh my! I hope the weather breaks soon and you start feeling better. This fall has definitely been crazy. 

  • LK

    Deborah,  Hope you feel better!  This fall weather isn't for us asthmatics!

  • Kathy P

    Sorry to hear that Deborah Don't wait too long to get in with the doctor. Maybe call tomorrow since we're heading into a weekend? That was my problem – I was taking a conservative "wait and see" approach, but it totally backfired!

  • Deborah Bartlett

    Thanks everyone! I know that this is a holiday weekend. Veterans Day is being celebrated on Monday. 🇺🇸 Maybe some doctors are closed. Not worth taking a chance. I am going to call my immunologist today. Calling him because I have an appointment on the 27th. If he wants to tell me to do the famous Pred taper and call in a prescription for me, then maybe I can up my appointment from the 27th to early next week. I do not drive anymore. My DH is working in New York today. I do not have a way to get to the doctor today. I will call his office early and ask that he call me ASAP. I will go from there. I am leery about going to an urgent care walk in right now. Too many sick germs in the waiting room!!!!

  • K8sMom2002

    Deborah, very smart to call your doc today — I actually feel more comfortable talking with my doc over the phone than I do seeing a new-to-me PA or doc who doesn't know me in an urgent care center. And like you, I'm leery of going to any sort of doctor's office or ER or UC during flu season!

  • Deborah Bartlett

    Thanks Cynthia. I am waiting for a call back from the doctor. My DH will pick up a prescription for me on his way home, if I need one. I am certain that I will. I will start it right away. In my experience, it is better to take care of these kind of problems before they get worse!!! 

  • Kathy P

    Glad you called the doc Deborah. 

    Well I made it to Denver. The new CA wildfire just north of me is bad – I could smell the smoke already in the house because there was a window partially open overnight. It was even worse as I got closer to the airport. The shuttle driver had something scented on too. Ugh! 

    I took the train from the airport then walked the 3/4 mile to the hotel…. except I forgot that I was landing at altitude with cold air! Didn't really make things worse, I just took it slow. So I'm calling this a win because I recognized the issue and adjusted. 

  • Deborah Bartlett

    Good for you Kathy. You made it through!!!! Yay!!!! 🎈🎈🎈  My doctor is putting me on a TADA…. Prednisone taper!!!! He phoned in a new prescription and DH will pick it up on his way home. DH= delivery human in this case. Ha ha! Seeing the doctor on November 20th. If this doesn't clear, I will give him a call, but it should. He got right on the phone with me when I called and spoke with me for 15 minutes .One of the best docs I've had!!! 😊

  • Deborah Bartlett

    Thanks Melissa. The receptionist called me and told me he was doing allergy shot appointments and to call after 1 pm. I called back at 1:30 and he got right on the phone 

  • LK

    Deborah,  So glad your doctor could talk with you and get some meds headed your way!  

    Kathy,  Glad you were thinking and adjusted what you were doing!  Hope you feel better!  

  • Deborah Bartlett

    This is my worst fall yet. I am determined to keep on going!! I am looking forward to making out my Christmas cards and baking and giving people cookie plates. Heck….let's all make the best of each day!!

  • LK

    Giving people cookie plates is so much fun!  Love seeing their faces light up!   

  • LK

    I found some cookie plates that have that poem "The Giving Plate" .  

    Especially like the last few lines about filling the plate up again and passing it along to other members of your family and friends!

  • Pljohns

    Cookie plates have been my go to gift for coworkers for year.  There was one year that I made 110 DOZEN cookes to fill all of the plates we were giving out.    Let’s just say I didn’t want to see a cookie for a while.

    Today, Asthma has definitely won with me.  i can’t walk from one end of the house to another without having to stop, I have no voice and am beyond exhausted.  I’ve been doing nebs every 4 hours for 5 days now with no improvement so it was time to throw some pred at it.  My normal taper starts at 60mg so that’s where I started.  I probably won’t sleep tonight but I sure slept all afternoon. At that dose, let the pred hot flashes begin!

  • Kathy P

    Deborah – what a great attitude!

    Lisa – I used to help make cookie plates for all the teachers at my kids' school. We had parents bake cookies and then we'd production line putting together 100 plates!

    So sorry that things tanked to where you need pred. Hope it kicks in and has you feeling better. 

    I'm done with my antibiotics and pred taper, but now I'm headed back to wildfire smoke. Not quite sure how that's going to go. 

  • Deborah Bartlett

    I sure do hope everyone feels well for their Monday routine. Lets all look forward to the holidays and our cookie plates. If we all lived close, we could have a terrific cookie swap!!!!! 🍪🍪🍪

  • Deborah Bartlett

    Sorry about the Pred taper. We all know what it's like. I am sitting in my kitchen on a stool at the counter taking a little break. Sometimes Pred makes my face feel like it's on fire. I hope it's not….the smoke will trigger an asthma attack! Seriously…sometimes the Pred is the only way to bring down the inflammation so I am not so short of breath. Take care everyone!

  • Pljohns

    Asthma is winning for me again today-got about 2 hours of sleep last night thanks to the pred so I'm tired today and covering 2 clinics.  I started 60 mg of pred last night and will see what the pulmo wants me to taper to.  I have a big ol' nasty taper as I call it that lasts 38 days but I don't think I need that one yet but I don't think a short burst is going to turn this around either.  Right now, and for the first time in almost a year, it's definitely beating me…

  • Deborah Bartlett

    I hope you can turn this thing around!!! I am sorry that you are going through this. I am doing the Pred taper myself. I am doing my best and trying to focus on other things. Do your best to get through the day!!!! (((safe germ free hugs)))

  • Deborah Bartlett

    I need to be on alert and take precautions. DH called just now. One co-worker has a cold and went home early. DH was working with him today. His boss is sick and has a tube coming out of each nostril with Vicks VapoRub in the tubes. Stay away from me buddy! I have low immunity due to my inhalers. I am on Pred…we all know what that means. Yikes!!!!