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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
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I understand your frustration I have been hospitalized to many times to count and been rushed a few times to a bigger health center by ambulance for closer monitoring and have been intubated once. It is so frusterating to live life like that. I also see a specialisit I see a respirologist every 6 weeks 3 hours a way. i have moved, i have changed jobs (although now I am on disability) I understand your frustration. Please let me know if I can be of any more help. I am on so many medications. It is very frustrating. i am currently trying a gluten free diet right now to see if that helps. I do see a counsler for mental health and stress managment as stress really triggers my asthma.
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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.
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How are you feeling? Do you have trouble with weather changes and changes in the Baramotic pressure could that be what is causing your asthma? Do you have an action plan to follow? Hope you feel better soon.
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My action plan deals with symbicort I increase it to 2 puffs 4 times a day and when I am back in the green zone for 2 days decrease it to 3 times a day then 2 times a day. I also utilize atrovent puffer every 4-6 hours and ventolin as needed. Could u take a form in with you when u see your pulmo next time?
I am from Manitoba so I understand the weather changes I have been struggling with them to it is very frustrating and not many people understand. Hope u feel better soon.
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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.
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Glad to hear you are able to go to a nj clinic, I was recently started on an antianxiety/antidepressent medication to see if that would help, I tend to land in hospital every month and ended up being intubated for the first time last month - scary. I haven't noticed a huge difference to be honest. I do maybe feel less depressed I guess but if this disease could be controlled I would feel even better.
I am no longer working as there were too many exposures at work and I haven't been able to find another job yet, nobody wants me which I don't blame them I think I am sick more days then I work.
Let me know what happens when you get to the nj clinic.
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Yeah unfortunately you can't get the combivent inhaler in Canada anymore not sure why as they have them in nebulizer form. I utilize both ventolin and atrovent puffers when I am flared, I find the atrovent good for drying up the mucous that I cough up.
I don't like using it as there are side effects but sometimes ventolin is not enough. Hope your feeling well, sorry it took me awhile to respond.
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I am guessing atrovent is what they used in the nebulizer along with ventolin - that is what I get when I end up in emerg. I am on an atrovent inhaler that I use at home when my asthma acts up. I am also on spiriva which is a long term medication like atrovent that you take once a day.
Because you have allergies I would recommned seeing an allergy/asthma physician. I don't seem to have allergies although they did allergy testing when I was on high doses of prednisone. I see a pulminoloigst that specializes in COPD/Asthma and chronic cough and have found her to be quite good listens to me when I explain my symptoms.
Good luck I hope you find a doctor who works with you instead of ignoring you.
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Sorry it has been taking me so long to reply I haven't been feeling great.
I have not gone yet, as I live in Canada it is slightly different. My referral went at the end of May to a Dr. Gerarld Cox in Ontario (I live in the province of Manitoba). They wanted approval from Manitoba Health that they will pay for it before they would see me. The referral went to Manitoba health in July I hadn't heard anything by september and neither had my specialist in Manitoba. By end of september she finally found out that the Hamilton site is closed as the dr is away on Medical.
Now my specialist is away till the end of this month, so we will see what happens, there are only 3 sights in Canada so the next one is in Quebec.
It is frustrating I have looked into the states but its around 50 000 and I would have no coverage.
I am still hoping I will go soon I am sick of landing in the emergency department every month.
I will keep you updated.
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