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    amcate posted:
    I'm no good at writing and tend to be wordy, so please forgive me. I don't know how to put my question into words.

    I've been moderate to severe persistent asthma for 12 years. For the first 11 years, I thought if I just got rid of enough aggravating factors then the asthma would behave itself and I could go back to life as normal before it got bad. Though my efforts led to a 75% reduction in pred use, still it's pretty high and I have to stay indoors a lot, and I wear a mask unless I'm at work, etc. It just seems that I've done all I know, but I just can't get it any better. For instance, 2 months ago my current exacerbation started due to controlled burns the forest service was doing, and I'm not still not back to normal though I have done all I know to do.

    How does a person go from hoping for a better future to accepting that this is how it will always be?

    I truly believe that when you have an accurate understanding of reality, you make better decisions. The reality I currently see is one in which I'm behind financially, I have a disease with no cure, mostly others don't understand though they may care for me, I can't trust that others will be there for me in the future due to their lack of understanding of the disease, I take higher levels than recommended of pred leaving me at risk for multiple diseases in the future, I may not always be able to continue in my present occupation and may suffer loss of income in the future, so I have to be financially conservative and save and take care of myself the best I can now. I see a reality in which having a social network will always be hard because of wearing a mask or if I don't wear one then the asthma gets out of control and I at some point have an attack in front of others which scares them off, or I just stay at home all the time. So, I have to learn to be by myself.

    I think you do what you can, and if you can't do anything about it, then you accept it....but I don't understand how to accept it or be at peace with it. I don't wish to always be a complainer, and I want to be able to spend energy only on things I can do something about. How does a person be a peace with a reality they don't like?

    Anyway, compllicated question, but if any of you have stories of if and how you've managed it, I'm all ears.
    bresky responded:
    Hi Amcate

    As you know I have severe asthma. But I am very lucky I have friends who support me hugely and for the most part my parents are very supportive. I also wear a mask out and my friends are okay with it, we do joke about it and I think I am more self conscious about it then them.
    I have lost some friends who didn't understand but also realized they werent true friends. If I am sick of staying home I go to my friends house as a couple of them have made it safe for me to be at.
    I do see a mental health worker also every 3 weeks which helps me work out my frustration and depression.
    I am currently taking courses at university by distance ed to allow me to change my career for something safer if at all possible.
    I am also on lots of pred and I try not to think of long term complications I try to live now and enjoy what I can. I only usually have 1-2 weeks of no prednisone. I know I will have problems later one but will face those when I can.
    I journal my frustrations with the illness and leave them there. I try not to focus on my illness. I am a person with a disease. Not a disease and it has helped. I do have frustrations many especially when I feel unwell or in hospital or when I was supposed to do something with friends and wasn't feeling well enough to go, I feel like i am unreliable, again I have awesome friends who support me and don't care.
    Hope this helps some
    amcate replied to bresky's response:
    Thanks for your thoughts, Bre. I had asthma more like yours when I lived in Houston. I was on and off prednisone, and my peak flows never did get in a green zone even with 80 mg of prednisone a day and theophylline. My guess is it was the pollution. I had grown up in Houston, so my friends and family were there. I don't recall having as much emotional distress from it all back then, though I do recall being fustrated with the asthma itself. I had a guy say once, "I know you...we went to the same college. I would like to ask you out on a date. What do you like to do?" I said, "I like to breathe" since I just wanted to be stable with that.

    After moving, though, it has been harder to find social support. Being new to a community, and then being different makes it harder. I've had times when people have joked about me wearing a mask, but I don't think it was friendly because the same people left me in a bathroom alone without access to my rescue medicines knowing I was having an attack. I had tried to explain to them beforehand about asthma, but they just joked about it. I figure if it was good natured, then why would they not care if I could reverse an attack? I've had other similar situations at work, and one coworker who was supportive (her dad had asthma and she remembers the adrenaline shots) said she was surprised and that you would think healthcare workers would have more compassion.

    My work has its bad points and good points. On the good side, I can easily have a flexible schedule, which allows me to have food and shelter though I don't qualify for disability due to spirometry readings. Other jobs don't have that, so I'm not sure if working full time would work or not. Also, I can travel to other places with clean air as long as I can work 3 months straight, which typically I can (sometimes not, but usually yes). So, if the air conditions get really bad here, I can take off. It also allows me to save for the future since I doubt my family will help me financially in the future. On the bad side, infection.

    I guess that part of what makes me have difficulty right now whereas when I was more severe I didn't have as much difficulty is the social support not being so good and various economic issues.

    I didn't mean to make you feel that you are a disease as opposed to a person, if I did. Truth is, that is part of what gives me difficulty when I wear a mask-people treat me as if I'm an object, a mask, and no longer a person. They don't want to get to know me. I think it's easier when a person has already been your friend then you get sick as opposed to making new friends once your sick, but I'm not sure. I don't like it when they reduce me to a mask.

    I have considered in the long term if I get worse to retrain in a related field that I could do from home, like medical transcription or billing.

    Staying in the present and not worrying about the future makes sense. Sometimes I struggle with losing hope.

    I have written things out, like a journal. What's hard for me with leaving it there is that then I go to work and get made fun of, or I walk down the street and people call me names from their car, or people call me a freak. Or recently I didn't have the money to drive to a close by store, so I walked. As I waited, I found a chair and sat down and got responses from others that weren't very understanding since I looked tired. How do I leave it there when I have to face difficult social scenarios when I go out of my apartment? I have considered moving, but I breathe better here than in most places. I stopped wearing a mask at work since I couldn't get a job, so the social situation is better there though I now have to take more pred.

    It's hard due to lack of social support, but I do want to thank you for your thoughts and taking the time to write. It helps to know someone who knows asthma and wants to help.
    amcate replied to bresky's response:
    I neglected to mention that a number of months ago I went by Asthma Allies, a local group which does patient education normally in people's homes. The owner said she was an RN and knows what I'm referring to. She has anaphylactic reactions to latex, and she worked in a hospital before they were so careful about latex. She was okay as long as she didn't come into direct skin contact with it. Her coworkers would place latex in her office and then make beats on how fast she would react. Her reactions were life threatening. She made a referral to a counselor with, "coworkers can not accept her diagnosis" in the comment line. However, affording the transportation was difficult for me, so I didn't follow up at that time. I also was having a hard time getting a straight answer from insurance if they would pay for it, which made things worse.

    I had considered filing ADA complaints, but then a retired nurse who had done that in NY advised against it, saying it would follow me and I wouldn't be able to get a job even though that is illegal. That's what happened to her in NY and why she moved here.

    I do get upset about the disease itself, and I wish I didn't have it, but it's complicated by social situations that I can't control or do much about as far as I can determine.

    As I mentioned above, I no longer wear a mask to work, and am working in a different facility. I try to hide the asthma since it seems to be a stigma, though I do mention it when I have to. They seem to be a better group, but then again I also don't look different now...just more pred.

    Thanks again for your time and concern.

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