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    amcate posted:
    I've run into a difficult situation, and was wondering if any of you have faced something similar and can offer guidance. As I've had a lot of health problems, historically my family has helped pay a lot for the holiday trip. This year, however, the sisters are saying I just take advantage of others in the family and don't understand they also have their expenses. I've tried to clarify this by saying they need to get me clear information on what they can cover and what they can't by September so I can determine if I can afford the trip or not and make arrangements to work if I can't. I've further stated that I'm not trying to take money from anyone, but since I have health problems that I can't guarantee that I will always be able to afford the trip without their help, which I'm okay with. If I can't afford it, then I won't go. I just need their input on what they feel they can help with by September so I can make plans with my employer and work instead if need be. Meanwhile, one sister is saying that if I don't go, then I'm hurting my parents because they need to see us all together. I've tried to explain to them that it's hard for me to work full time partially due to the asthma at a relatively young age, and they say, "you're not the only one with health problems, you know" even though they are able to hold down a full time job. I feel guilty if I don't go, and I feel like I'm embarrassed by not having the money if I do and that they think I'm just using them. Thanks for any information. I've encouraged them not to give me any money for my birthday to prove my point that I'm not trying to take advantage of them. Thanks, and let me know if any of you have had similar experiences and how you dealt with it.
    bresky responded:
    Hi Amcate

    I am sorry to hear about your financial situation and family situation.
    I am no longer able to work due to illness and am collecting unemployment insurance until my long term disability kicks in, I am really hoping they will change their minds as I am bored out of my tree and want to work, I am only 28 and way to young to be on unemployment.
    Fortunately for me my family understands the financial side of things. My parents have helped me a few times afford my medications as I am on a pile of them, plus I drive 6 hours to see my specialist once a month so gas is expensive.
    However when I was still working and beginning to have alot of trouble with my asthma my parents didn't understand why I was in hospital and why I was missing work even though I explained it to them and so did the doctor. It took until I was rushed by ambulance to a bigger hospital because I was having so much trouble breathing that they understood.
    I hope your family understands about the vacation, our family is taking a trip to Mexico next week for a close family friends wedding however I am not going. It isn't due to finances although I wouldn't be able to afford it, its to dangerous for me to travel out of country especially if something happens. They would love for me to come and I would love to go but we understand the dangers too well and its not worth it.
    I think your parents would understand if you couldn't afford to make the trip if you explained it to them. I hope it goes well sorry to hear your family isn't supportive it adds more stress on you.
    amcate replied to bresky's response:
    Thank you for your response, bresky. I've been trying to save money on electricity, so haven't checked the boards in a few weeks.

    I work in per diem in healthcare. The employer calls me, gives me a date, and then asks if I can work. I can say yes or no. This arrangement allows me to work when I feel well and to decrease hours when I'm in an exacerbation and can't do much physically. On the other hand, the employer is under no obligation to call me. I prefer to work as opposed to getting disability because I like to be out doing things.

    Even if I wanted disability, the state is very strict about its definitions and solely relies on spirometry readings considering the predicted value to be the same as personal best, which in my case is not true. Also, they say you are not disabled if you can do sedentary work, even if that means a decrease in earnings from the job you originally trained for.

    Both of my sisters have asthma, but it's very mild and interrmittant. Neither takes daily controllers on a regular basis. My parents say they understand, especially if I tell my dad I have to work since he did that when we were little as well. My sisters don't, because the oldest wants to do right by my parents and make them happy. She also has a husband who has physical issues, and so may be overwhelmed. In any case, I can't depend on them for much of anything, so I have to take care of myself. My parents would understand me not going, but the sisters probably not. Of course, my dad has seen me during a severe attack whereas my sisters never have. The sisters have seen attacks, but not really bad ones.

    I guess all I can do is to take care of myself, and let them do whatever they will. I'm not willing to put myself into long term financial harm. I'll try to see the parents if at all possible, though.

    This Christmas is already decided. I'm going with knowing that some items will be covered for me. Unfortunately, the oldest sister at the last moment told me I'd be paying for other items that I didn't expect. She said, "just budget for it now", which is difficult. It would have been better to let me know ahead of time. I'll assume I'm paying for everything next time, and will let them know whether I can come or not next year based on that.

    It would be better if they understood, though, and if they didn't make me feel like a loser or a burden...but that's not in my control. I told them I was not medically stable at the time all this happened, but they didn't seem to care. So, after Christmas plans were decided, I didn't say much to them because I needed to focus on my health.

    Thanks again for the response.
    amcate replied to bresky's response:
    I'm sorry, I forgot to mention that one reason my sisters may not understand the asthma situation is that I don't go to the hospital since I don't want to be resusitated or intubated and sometimes the hospitals around here don't listen to that wish. I've worked in nursing homes and seen folks who had a bad asthma attack and now with anoxic brain injury, and I don't want to risk that. So, I do the best I can at home, and when I die, I die. Sometimes folks ask me, "have you ever been hospitalized?" and I say, "no", and they assume that I'm doing pretty well. Truth is, I've had attacks where I lose consciousness and other issues that normally folks go to the hospital for. I've tried to explain to doctors why that question is a poor indication of severity in my case, and normally the conversation ends with them trying to scare me about me dying and me saying that being a long term resident in a nursing home in the USA is a worse fate than death. I have a medical POA and living will. I live alone as well. So, my sisters have never seen a severe attack and they may not understand because I don't go to the hospital that sometimes I can do things and sometimes not.
    deluxehd replied to amcate's response:
    Hi amcate,

    First you need to be concerned with your health. Which you already said. Second you need to be concerned with how your parents feel about you coming home or not. Not what your sisters have to say or think. As long as your parents understand.

    Unfortunately so many people just don't understand asthma and how it can feel to have attacks. They also don't understand all the precautions we take and all the things we avoid to not have attacks.

    Like you, I do my best to not go to the hospital. But for me, I also have a latex allergy and can't be anywhere near it. Don't have to touch it, I react to airbourne. I also don't show on a spirometer how bad I am really feeling. I started to react to all my meds so I can't take anything right now. I am home most of the time to avoid exposure.

    Talk to your parents and get there true feelings on you going home. Take care of yourself and good luck.
    amcate replied to deluxehd's response:
    Thanks for your suggestions, Debbie. I didn't speak with my mom since she does not understand finances very well, so would not understand, "I can't afford it" or "I have to work". We would be supporting them in their retirement if it weren't for my dad.

    I spoke with my dad, and he said, "you need to take care of yourself first. I would love to see you, and that would be my preference, but you remember when you were young and we were just trying to keep the house? Your mother wanted to take trips every year to see her parents, but for five people traveling across country...we didn't have the money. I did everything I could to keep my job. If there was a family gathering, and I thought I would be putting my job at risk to go or we couldn't afford it, we didn't go. So, don't feel bad, but make it if you can." I told him, "but your getting old, and you could die, and I don't want to neglect you." He said, "who mentioned that? You've been very sweet all these years. Where is the guilt coming from? Take care of yourself, and don't worry about what others say. No one else in this life will take care of you, so you have to take care of yourself. That being said, if there is anyway for you to be here, I would love to see you....but never put yourself at risk financially."

    In terms of my sisters, I don't believe they understand the severity level. For instance, one of them said she was going out to the forest to see the birds and then going to another forest to cut down a Christmas tree since they have a permit. For me, the time I'm not at work or running errands, I'm at home because I have the most control over this environment. I would love to have the money and the asthma control to go out like that, but I don't right now. There's a lot of things they take for granted since their asthma is so mild, and they don't understand how the severity level affects my ability to work full time. I can go on a trip for a week and be okay in terms of asthma because the duration is limited. It's mostly the finances that limit my ability to go. However, if I were to go out all the time, then it affects the long term control of the asthma, if that makes sense.

    I've decided that my sisters don't have much insight or perhaps are manipulative, but in any case to follow what my dad said: take care of myself first and foremost, and then worry about others. If a person can't understand me taking care of myself physically or trying to ensure I have my basic needs met long term (not greed, just basic needs), then I guess it's their problem.
    amcate replied to deluxehd's response:
    Wish to thank the both of you for your response. It's always good to talk with people who understand.

    Bresky, I wish to add that I think your asthma is more severe than mine, so I have no doubt you would have to be on disability from what you describe. I guess I'm fortunate because I go through periods of normally 2-3 months were I'm fairly well controlled which alternate with periods of a month or two where I struggle and on and off of prednisone.

    Debbie, I know I'm repeating myself from other threads, but not everyone reads every thread, so here I go. If taken as a percentage of my personal best, the peak flow and spirometry numbers behave as a person would expect asthma to behave. For this reason, the peak flow meter helps me determine what medicines to take and when. The problem is the spirometry machine takes it as a percentage of predicted value, so it doesn't show as a problem. My personal best and predicted value are very different from each other, and so it effectively disqualifies me for support programs from the state that I would otherwise qualify for. I spoke with a disability attorney to see if it would ever be an option for me if I got worse, and he said he wouldn't waste his time trying to apply.

    Anyway, between this experience and a recent conversation with my medical POA in which he was trying to convince me to purposely infect myself with worms in order to cure my asthma, I've learned a few things. First off, sometimes reality is not what I would like it to be, but if I can accurately see reality as it is and make decisions from that, then the likelihood of the intended result happening is greater. Second, there are things I can control and things I can't, so it makes the most sense to focus energy on those things I have control over (I can't control my sister's attitude, but I can control if I go on a trip I can't afford), and I've learned that there is a balance between taking care of yourself and taking care of others.

    Thanks again to both of you. It helps to know there are folks who understand what it is like to live with this and to get your suggestions.
    bresky replied to amcate's response:
    Hi Amcate

    Sorry it took me so long to reply, haven't been feeling the greatest again which is very frustrating however we have had lots of weather changes.
    I am really lucky as I do have a great support group and awesome friends. I have lost some, but they do understand when I say I can't or I am not feeling well. They know my triggers and have made their houses safe and have driven me to the hospital too many times to count.
    I understand the concern about intubation and hospitalization. I know I said I never wanted to be intubated to my pulmo and she said they would probably still due it because of my age. However my parents know i don't want to be on lifesupport if I am not improving.
    i am sorry you are struggling with your family, at least your dad seems supportive. Your sister probably also doesn't understand the expense with medication also. It is so expensive to buy medication for a month along with everything else. I hope things improve and you make the decision right for u.
    Sorry if it is confusing or rambling I am on prednisone and tired.
    amcate replied to bresky's response:
    It just means a lot that you responded, bresky. Don't worry about rambling. One thing my sisters did not understand is why doing this to me when I'm waking up every hour taking stimulants and on major levels of pred (40-80 mg a day) was a bad idea. It affects my thinking as well.

    Most of the cost for me is from missed work because sometimes I can and sometimes I can't. One good thing about my state is that they came up with a stop gap insurance program that a limited number of residence can participate in. A social worker told me how to apply in 2007, and I got on the rolls before the economy crashed. It turns out I do qualify for that program since it has nothing to do with spirometry values. I only have to pay 3 dollars for each prescription, though they keep trying to force me off Advair 500/50 to Dulera, and my allergist keeps filling out a form saying Dulera will not hold me stable. They usually approve me for the Advair for 6 months at a time, but they've always approved it.

    I think whether to be intubated or resusitated is a very personal decision. I know in the USA even if you have DNR orders, especially if you are young, they tend to do a full code anyway. This is why I set up a medical POA. Even that is no guarantee that they wil discontinue feeding tubes, etc. I'm not as severe as you, so I only really get into trouble where I probably should go to the hospital once every 2 years....but I just avoid the hospital because I don't trust them to honor the DNR/DNI.

    My father is more supportive, and I believe it is because he is very realistic. He can hear facts and data even if he doesn't like them, at least on an intellectual level. There are some things, though, that he still doesn't get....but he's close enough. My mom tends to deal with things by denial, and sticking her head in the sand like an ostrich. I'm not sure where the sisters are coming from, I think the oldest is simply overwhelmed because she worries about her husband and my aging parents and I guess the middle one just does not care.

    I think having social support is important. I've found it hard since I moved from the area where my friends were due to the pollution and I was moving around the country finding where I could breath at the time in my life when I normally would be getting married. It's hard to make new friends when so much of what I do revolves around trying to keep my breathing controlled or I have an attack and it scares them away.

    Again, don't worry about rambling or being confused. I understand...been on high levels of stimulants for rescue meds and on and off pred. Get some rest, take care of yourself.
    amcate replied to bresky's response:
    This is an update on how Christmas went. The middle sister yelled at me when I spit in the sink and then left to try to find my spacer (my peak flows were doing weird things and I was mostly concerned with my breathing). My guess is she didn't understand I was concerned with my breathing because she said it was rude to spit in the sink and then not clean it up immediately. Anyway, that got cleared up and I agreed I would clean it up after I was okay breathing wise.

    Unfortunately, neither she nor the oldest sister appeared to understand the financial repercussions of moderate to severe persistent asthma. In the past, the oldest sister and my father have helped paying my way due to other medical issues and bills. Now, however, the sisters treated me not having money as if I was being irresponsible, "you are an adult and so act like one and pay for yourself", etc. I tried to explain, and described a day I recently had in which there was no way I could work (how do you work when you take the nebulizer and are spitting up clear fluid left and right and shaking like a leaf from the neb, and keep coughing, only the lungs hurt and the fluid won't come up due to the tightness, so you inhale the neb treatment the best you can only you're spasming a great deal?) However, they could not understand and still treated it like I was just a freeloader who takes advantage of them. So, I decided to not accept money from them even if they offered it.

    My father gave me a check of several hundred dollars. I called him after returning, indicating the oldest sister said he was in financial trouble and that he himself indicated the same. I offered to tear up his check so I wouldn't be putting him into trouble. He asked where my offer was coming from, so I told him of the things the sisters had said to me and I just wanted to be sure I wasn't taking advantage of his generousity and that he was financially okay. He said, "when someone offers to give you money, the best thing to do is to shut up, deposit it, and then use the money to go out and get drunk. I wouldn't have given it to you if I couldn't afford it."

    So, I just accept the sisters how they are, and don't want any money from them. I am fortunate my dad is understanding.

    Next year, if I can afford to pay my way, I will. If I can't, then I won't go. My father said he would understand.

    In the meantime, I take care of myself and do whatever I need to for myself. Thank you all for your suggestions and support.

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