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Disease severity insight

Hi all, 

Weird question for you, how do you think your objective disease severity (what your doctor says about you) matches up to how you and the rest of the world perceives you? And do you think it’s a problem if there is disagreement especially between how you feel/see yourself and what the numbers/treatment says? 

I got to thinking about this after my work wouldn’t let me resume working: 

– the world (work) thinks I’m a walking train wreck. In their eyes I’m on max therapy and could keel over at any time.

– pulmo places me in severe based on level of therapy (6) needed to keep me controlled and symptoms frequency (act 10).

– myself, I look in the mirror and see someone’s who’s very fatigued and frequently gets infections, but I don’t think of myself as severely ill/debilitated. I think I can handle a 10 hr work day. 

I’ve been wondering if my green-ness to asthma makes me expect too much too soon, which is why I run out and overdo and then end up in the bed next day like a turkey and get so frustrated. 

Mhmm, this would be a good pulmo question. What to expect in terms of expected recovery + regression/control of symptoms. 

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  • Shea

    Good questions, Em. It is tough to know where you are at– and I think the pulmos hit at it before– that prednisone can mask things.

    In my opinion, the first step is getting off oral prednisone.

    I had problems in the past with thinking I was OK and doing a certain amount but when I lowered the fatigue and symptoms and sensitivities were revealed. High doses make you feel like you can take on the world. Low, and moving st all can be hard. It is like Alice in Wonderland when she eats the mushroom in the courthouse and faces the queen, and then later is shrunk small and chased by the cards. There is sone nirmal size between extra cortisol and cortisol withdrawal that lies an accurate picture of ones real ability.

    To me, getting off prednisone and stabilizing is a goal before considering work. But, other members on here I know work while up and down on it. Long-term prednisone is bad and I have been on it for over 7 years without being able to get lower than 18-20mgs while keeping symptoms managed. So it is a high priority for me… Also my disease is Churg-Strauss Syndrome which the allergic inflammation affects more areas of my body…. So I cant say what I do for myself I would recommend to others or apply to others exactly. But I do think it is hard to get an idea of where you are really at while on prednisone. 

  • Emelina

    Thank you Shea, great point, I’d forgotten about the wild card of prednisone and its effects. It is pretty crazy how sensitive our bodies are to the high dose vs low dose. I still love how you describe the “planned flu” associated with a wean. My next step down to 10mg is in a few days. 😬 I think I’m going to embrace the energy I have and go fish with my ds! 😁

  • Shea

    That sounds like a great plan Em! Enjoy it! (I do that too– do social stuff and house stuff like get food in the fridge, and clean the house, so that when I go down I can take it nice and easy!) 

    I have been doing 20-19-20-19. I swear I can tell a 20 mg day from a 19 day. Today is a 20mg day but Im still in bed because of yesterdays activity. 

  • Emelina

    Shea, it’s amazing how exquisitely sensitive our bodies are to the prednisone and how far reaching the effects of cortisone withdrawal are. I feel like pred withdrawals are like trying to run your car on E. I definitely believe you can feel the 19 v 20 difference. I try to take pred before 9 am and can definitely feel it if I screw up and am late taking it. 😬

  • K8sMom2002

    Em, you always have such great, thought-provoking questions!

    One thing to consider is what does your closest family members who really "get" your asthma think? Your family can see you struggle when you shrug it off or push through, when you're in full denial or bargaining mode. They know whether you tend to minimize your symptoms. They can tell how wiped out you are after certain activities — cooking dinner, working a regular day, working a pretty stressful day …

    Remember, too, that you can't work a 10-hour day in isolation. That 10-hour workday comes with other tasks, too: getting our kids off to school, the commute and the actual walk to work, laundry (at least our own laundry even if the rest of the family members are responsible for their own laundry), meal preparation, medication and any respiratory or physical therapy. It's all the logistics that go along with getting to work.

    At first, we may be able to handle the logistics OR the full workday, but not both at the same time. So could you have a plan in place for your return to work? Some possible suggestions:

    • return at first for half shifts or light duty full shifts (frustrating, I know!)
    • ask for help from family members for home help
      • meal prep and clean-up
      • laundry
      • household chores
    • see if your kiddos can car pool with another parent at first, or ride the bus
    • ask if you can have a temporary parking permit somewhere closer to your workplace's entrance

    Do you think it would change your supervisors' minds if they knew you'd carefully thought through all this and had grounded your plan in thoughtful self-reflection? "Yes, I understand it will be a challenge … that's why I've planned X, and my family has offered to do Y."

  • Pljohns

    Actually hearing the doctor "categorize" you can be a bit demoralizing-when I was first diagnosed, I was "moderate persistant"  now, 8 years later, I'm "severe uncontrolled persistant".  I've learned it does no good to tell DH or try to explain it to him-I'm still going to have to do everything I do now, no matter what "category" I fall into.  

    Over the years, DH has learned to pick up on few things-I cough a bit more and the more my voice goes, generally the harder time I'm having breathing.  He jokes and says I have the smokers cough he should have but doesn't and I NEVER smoked!  I can tell that I don't bounce back as quickly and more and more things bother me but I still don't see myself as "severely ill"-I work full time and do 90% of what needs to be done at home-inside, outside and everything else, have the kids, all the bills-you get the picture and in my mind, I keep saying if I was so sick, I wouldn't be able to do all of that.  I don't know how true that is or how much I'm fooling myself and being stubborn and refusing to give in.  Either way, I refuse to just STOP TRYING-I'm determined the way people paint us is not what I'm going to be.

  • LK
    K8sMom2002 posted:

    One thing to consider is what does your closest family members who really "get" your asthma think? Your family can see you struggle when you shrug it off or push through, when you're in full denial or bargaining mode. They know whether you tend to minimize your symptoms. They can tell how wiped out you are after certain activities — cooking dinner, working a regular day, working a pretty stressful day …

    Remember, too, that you can't work a 10-hour day in isolation. That 10-hour workday comes with other tasks, too: getting our kids off to school, the commute and the actual walk to work, laundry (at least our own laundry even if the rest of the family members are responsible for their own laundry), meal preparation, medication and any respiratory or physical therapy. It's all the logistics that go along with getting to work.

     

    Cynthia,  My DH has only recently started noticing AND commenting on how he sees I am doing.  Pretty sure he never noticed before and if he ever did, he would not say anything.  May have partly been me not wanting to let on how much I was struggling.  He has come a long way in noticing what affects me and how it affects me.  Hate to admit it, but he has noticed when I am having troubles before I do sometimes.  

    You have nailed it on the head with explaining that it isn't just the work in isolation but the day includes all the regular life responsibilities.  

  • Shea

    Cynthia, I love those steps and advice. It really helps break up that "work day" into pieces, remembering the cumulative effect of work and home balancing— and YES to delegating some of those tasks! I remember when I was manager I would try to do everything because training others took work and I was too busy to do that– but when I did take sone time to train and delegate tasks it would make a ling-term change in my schedule and be so helpful.

    Em, if you take the time you have now to train/ delegate some of these tasks Cynthia mentiond, it could be a well-oiled machine by the time you go back to work (you might have already done that because you have been a working mom for a while– I never have but imagining it seens wild to me). But if you can oil it anymore, just having that plan in place might reduce some anxiety about wondering if it will be too much, because you know you have got some loads to be lighter and will be starting off with less on your plate than before. 

  • Emelina

    Hi Cynthia, Lynn, Lisa and Shea, 

    All excellent points, I loved that you pointed out that 10 hours doesn’t happen in isolation. I’ll talk to dh about his thoughts and perceptions of how things are going. I’m lucky that my dh takes over most of the house management while I’m working because my hours are so erratic. Unfortunately the structure at my work prevents light duty, shorter days, etc, it’s basically all or nothing. I’ve asked for additional staff to help share the burden on busy or sick days but the answer has always been no. Great thoughts though as I prepare for my new job. Thank you for the excellent thinking points. 

    Lynn, I love how you persevere and keep taking care of things. You are one tough amazing and strong cookie! 

    Lisa, that’s awesome that dh is another set of ears/eyes to point out changes/concerns that he sees. 

    Shea, right! I think delegation is key. It’s tough when you’ve managed tasks all on your own to give them up, but that’s what team work is about. 

    Thank you again for the wonderful food for thought.

  • Wheezy Me

    Wonderful question, Em, as always!

    I see my asthma about the same as my pulmo sees it in terms of control. Of course, we all see more aspects of the condition, simply because we live with it.

    Generally speaking, there can be a huge difference between how the patient and the doctor perceive any condition: Some patients think they are much more ill than their file says, whereas others ignore or deny important medical conditions completely- and both extremes pay the price. Most people are somewhere in between, and the important thing is to make sure you're in a good spot: that you take a good care of yourself, and don't let asthma control you- but know your limits.

    Everyone gave you excellent advice above. Just my general take on your question.

  • Deborah Bartlett
    Pljohns posted:

    Actually hearing the doctor "categorize" you can be a bit demoralizing-when I was first diagnosed, I was "moderate persistant"  now, 8 years later, I'm "severe uncontrolled persistant".  I've learned it does no good to tell DH or try to explain it to him-I'm still going to have to do everything I do now, no matter what "category" I fall into.  

    Over the years, DH has learned to pick up on few things-I cough a bit more and the more my voice goes, generally the harder time I'm having breathing.  He jokes and says I have the smokers cough he should have but doesn't and I NEVER smoked!  I can tell that I don't bounce back as quickly and more and more things bother me but I still don't see myself as "severely ill"-I work full time and do 90% of what needs to be done at home-inside, outside and everything else, have the kids, all the bills-you get the picture and in my mind, I keep saying if I was so sick, I wouldn't be able to do all of that.  I don't know how true that is or how much I'm fooling myself and being stubborn and refusing to give in.  Either way, I refuse to just STOP TRYING-I'm determined the way people paint us is not what I'm going to be.

    You do it ALL Lynn. I don't work outside the home. But I do everything here. I always have. Having overlap syndrome- Asthma and COPD, can be tough at times. I still do all the same things I did before I became ill. I think my DH expects everything from me. He simply cannot realize the severity of my illness. 

    Sometimes it doesn't matter what your numbers read. You know how you feel, and what your symptoms are. Illness does not play by the rules. Some docs will say: Oh, you can't be this, because your bloodwork says that. But, you are on this medication. This can't be happening to you. Each individual has a different story to tell. Each body can respond differently to treatment. Weather can change our health. Our illness is an ongoing daily battle. But we all get through. We have the will to keep on going! 💪

  • Wheezy Me
    Pljohns posted:
    I still don't see myself as "severely ill"-I work full time and do 90% of what needs to be done at home-inside, outside and everything else, have the kids, all the bills-you get the picture and in my mind, I keep saying if I was so sick, I wouldn't be able to do all of that.  I don't know how true that is or how much I'm fooling myself and being stubborn and refusing to give in.  Either way, I refuse to just STOP TRYING-I'm determined the way people paint us is not what I'm going to be.

    Lynn, doing all of that with severe asthma just means you're strong and determined not to give in, which is inspiring! Same goes for the other ladies here. 

    It is not "fooling yourself" as long as you know what you are able to do safely. Those severity categories were created to help physicians decide about treatment, not to tell us who we are and how we should live. 

  • Trigger77

    Shea- I feel like we are extremely similar in all you posted. I absolutely can not go to a low oral dose of 20 prednisone w/o having to be hospitalized. My usual dosage ranges for my lowest oral dose of 40 to upwards of 80 depending on air quality, flu season or any other minor type illness, even if I’m permanently homebound. Uggh I was diagnosed 3 years ago and I am only 47. I have severe uncontrolled asthma that does not respond to medications, eosinophilic asthma, Churg Strauss syndrome and I have never been a smoker. 

    I have two amazing specialists that oversee my care: Hammand Qureshi in The Woodlands, TX that has devoted so much time and effort to research any and all potential prescriptions (oral, 3 different nebulizer solutions,4 different inhalers, injections like Fasenra, multiple surgical procedures and tests) to help find the right mix to return some mobility to my life. He also recommended an additional specialist in the Houston Med Center that you cant see w/o a recommendation. He has been such a blessing to my treatments: Timothy A Connolly (PCCS)

    i firmly believe if you have knowledgeable doctors that spend time talking to you and really listening to what is going on medically wise you will see benefits in your ability to regain some of your former life.

    keep breathing as best you can, learn to not push too hard and listen to what your body is telling you. It’s not being selfish or lazy, it’s putting your health first so you can keep getting better and be there for your friends and family.

    hugs to you all lung warriors,

    Stacy 

  • K8sMom2002

    Welcome, Stacy! It sounds like you have worked super hard with your medical team to get some of that mobility and freedom back! 

    Lynn and Lisa and Deborah, good point about how our family members are sometimes in as much or more denial than the rest of us. You guys do carry a load that may not get shared as often as it should with family members. 

    But your positive attitude is just amazing!

  • LK

    Welcome Stacy!    

    So glad you are here!   

    I am so happy you have such a good medical team working with you.  That is a comfort.

    I have adult onset severe asthma and was diagnosed when I was 48 years old.  Would never have imagined that there was such a thing as severe asthma before this.  I have never smoked nor been around anyone who does.  

    Again, Welcome!

  • Wheezy Me

    Welcome to the boards, Stacy! You found a wonderful community!😊 And I'm glad you have a supporting medical team that treats you well.

    Adult-onset asthma is often more severe. Sure sounds hard to get it out of the blue… but your positive attitude helps a lot!

  • Shea

    Thank you Stacey for the message and sharing your experience! I am sorry to hear you have to do the prednisone dance but happy to know Im not alone!

    I just had a hospitalization and am back home– from heart issue– I went into Atrial fibrillation and had calked 911– and my heart rate was bouncing over 200 down to 90. I was admitted and they got it normal and I did a heart cath showing no blockages in arteries so that is ruled out. But I still have the damage caused by churg-strauss 7 years ago, and also my long-term steroid use can be a potential cause. I am following up with prinary, cardiology, and my immunologist in the next few weeks but for now am back home with some new cardio meds and a nice plan so I feel like I know what I need to do in different situations. 

    For now, I am staying at 20mgs pred regularly. I did get extra steroid meds in the ER and befire the heart cath procedure– letting them know I am on long-term steroids. I feel it is a good move to do that any time the body is under extra stress as it is not used to making its own cortisol. 

    It is tough maintaining the balance on prednisone :/ and working with different specialists who might not know as much about churg-strauss is tough, but I felt on top of it with giving them sone trust and being receptive to their expertise, but also communicating information they didbt know, and them being receptive back. It left me with a more positive feeling and a safer, better treatment plan.