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Asthma is controlling my life
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An_250440 posted:
I am recently diagnosed with asthma, and have been caught in an endless cycle of asthma problems since early Jan. Right now my doctor has placed on a short-term disability because my asthma is very uncontrolled even with all the medicines. (albutoral inhaler & neb,, 2 doses of predisone, Advair, and singulair). I was referred to a pulmonolgist, and received 2 pulmonary function tests and allergy screenings. I have not met with the specialist yet (feb. 25) to go over what the next step is. I am quickly becoming very depressed over this. I have always been pretty healthy, and used to never get sick. Now my body is revolting and I can not get healthy. The realization that this is NEVER going away, but is my new normal is very hard to deal with. I have never had to be out of work this long, in over 25 years of full time work,. I am posting this because I feel so alone. Noone in my family has a problem like this, so while they are concerned, they do not understand. I cannot locate any local support groups, and so I am hoping somewhere online is a place I can hear from others who may understand the stages of grief I am going through as I deal with this chronic illness. Any help is appreciated. I have been given Ativan by my primary care to help with anxiety. I have used it, but I do not want to rely on drugs. I am used to being an independent, take care of myself person, and asthma is destroying all that. Thank you.
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pljohns responded:
Welcome to the community-you will find lots of support here. I was diagnosed with severe, uncontrolled, non-allergic asthma 2 years ago. Like you, it hit hard because I have never been a sickly person. I tried all of the "traditional" asthma meds (Advair, symbacort, dulera) and had allergic reactions to them all. Needless to say, I use a neb of Brovana twice a day and will for the rest of my life. I also take meds for acid reflux. Until a year ago, inhalers worked great, but they suddenly stopped working. The med in them still works, but not in inhaler form. I have to carry a nebulizer with me always now. I was one test away from becoming a black belt in Korean Karate and had to quit because I couldn't stay in class long enough due to asthma attacks. Because mine is non-allergic (all alergy testing came back as no reaction), I never know what is going to hit me and I have very little warning about an impending attack. I have managed (through daily diary) to determine weather changes hit me hard and strong smells of any kind. It is hard to deal with. '

No one in my family has issues either, so they don't understand how difficult it is. It takes me longer to get ready to go anywhere because I have to use my neb-not just grab an inhaler. It does get better and you will learn that you can do pretty much anything you want, with some pre-planning and caution. I'm sure your specialist will be able to help you with this. Hang in there-it does get better.
 
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cwille responded:
hi, and i would also like to welcome u to the community. It's not easy but believe it or not u have to deal with it someway, I have had asthma now for 5 years, you can find me on the community board a few times, my name is under cwille, i am 45 and have worked since i was 15 and have now been put under perm disability retirement. It's hard i to have been through all the tests and the doc can't figure out why i can't seem to control the asthma, mine is a cough variant, i start coughing and can't stop , that's when all the steroids start, like the other person who replied to you , i carry a portable nebulizer with me because the emergency inhaler doesn't seem to work as well. I have found that even though we are not talking one to one it is nice to be able to rant on the community sight. If anything just to get things off your chest, I am on anxiety drugs also zanax, (?sp) i come from a family of heavy smokers, both parents died of lung cancer and by oldest brother has it, but i have never smoked, go figure, i have been in hospital over 30 times in the last 3 years or so. What i guess i am trying to say is don't give up , I always try to see that thier are others who have it worse than me, sometimes works , sometimes not, oh and just for info i don't know if it would help you, i am trying to excersice , but everytime i do i start to cough and have to do breathting treatment, my doc said to take a puff on my emergency inhaler before i excercise , believe it or not it helped , but check with your doc first. keep the faith , and just keep reading the posts you will see things that might help you.

god bless and hope you get better

cwille
 
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coughy16 responded:
Sorry to hear that you have been diagnosed with asthma, but the good news is that now you know what is wrong, and you can treat it and try to get your life back to normal! It can take quite awhile to get it under control, and during this time, it can get quite depressing with all the ups and downs. For me honestly, it was harder once I started feeling better once in awhile, because I honestly had gotten used to it, and once I experienced feeling better, it was really depressing to go right back down the tubes again! I was so lucky to have an allergist who refused to let me give up. He just kept telling me that eventually I would feel good most of the time, and that I would be able to do everything that I wanted to do. True that it won't go away, but for the overwhelming majority of people, it will improve with time and the right meds. I thought that I would never feel normal again, and it did take quite a long time any many medication tweaks, but I am finally at the point of stepping down my meds. I no longer freak out everytime I get a cold for fear of landing on prednisone. It is rare for someone to stay on disability due to asthma, so don't despair. Have you figured out what triggers your asthma? If not, try keeping track of date, time, where you were and what you were doing when an attack occurs. This can help you help your doctors figure out what's going on. What were the results of the pulmonary function tests and allergy screenings? My asthma is largely triggered by allergies, and so I eventually decided to try immunotherapy, which has had amazing results for me. I know it's hard, but try to stay positive, learn everything that you can so that you can be an active participant in your treatment, and keep in mind again, that most people with asthma go on to live normal lives. It is highly unlikely that you will not feel better with time and the right treatment. Hang in there, develop a comfortable relationship with whoever is treating your asthma so that you feel free to ask lots of questions. I used to go in to see my allergist with 3 or 4 pages of questions every single time in the beginning. He patiently answered all of them, and I think respected that I was trying to do whatever I could to help myself. Good luck, and come here and ask as many questions as you need! One last thing, sounds like you have only been on meds a month or so, they can take quite a long time to reach their maximum effectiveness, so hang on a bit longer!
 
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bcinnc replied to coughy16's response:
Thanks for the encouragement. I have not "officially" received my results, though I did get a copy of my allergy test. I am highly allergic to many things, including eggs, milk and wheat. I never figured eating a food would trigger asthma. What sort of immunotherapy have you tried? I cannot escape all my triggers, and I know the doctor has mentioned this. One of my problems is I have only seen this pulmonologist once, and I do not have a good relationship with him yet. I liked him and he seemed very good, but one 15 minutes appointment doesn't tell me what he will be like long term. My primary care (a PA) is great, but she has said she is not knowledgable enough to deal with my asthma/allergies right now. I am hoping this will all get under control, I will have a good plan to follow and things will calm down. Right now there are too many unknowns, and I don't know what to expect. As a control freak, I hate this feeling! I need to just relax, recuperate and wait for the next appointment. Tough to do at times! Plus I have used up all my sick leave (I am a teacher) and my paychecks may be much, much smaller. Added stress. I just can not imagine constantly living like this. It is rainy and cold today and just going in and out of the grocery store means I am wheezing and coughing. Plus being at home alone, not working, means I feel more and more isolated and alone. As hard as the physical effects have been, I think the emotional/mental is often worse. I am a single, indepentent woman, and suddenly my life is changing. Sorry for the vent. I needed the encouraging words you shared. Thanks!
 
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coughy16 replied to bcinnc's response:
You will not be like that forever!!!! You need to keep that thought in your head. When I was first diagnosed, my asthma was so far out of control that almost everything triggered me. I couldn't cook, the odors set me off. Eating ice cream, my hot tub, flour etc etc all set me off. Now that my asthma is under better control, there are waaaay less things that cause me problems. Food allergy testing is not as accurate as testing for some other things, do you get symptoms from eating these foods? Did you eliminate them from your diet and notice an improvement in your condition? If allergies are triggering you, I would highly recommend that you see an allergist. They are also normally expert at caring for asthma as the 2 conditions often go hand in hand. Be sure that you are taking all meds exactly as directed and that you keep the dr who is treating the asthma apprised of your condition. It is not at all unusual to have to change meds a number of times before hitting on the best combo. I am receiving allergy shots for trees, grasses and molds. I am also highly allergic to cats, but I just stay away from them. I do find it rather odd that they felt that you were sick enough that you needed to be off work for quite awhile, but yet your appts are so far apart. When I was first diagnosed and was out of control, I had standing appts every 2 weeks, and if I was doing really badly, my allergist would squeeze me in same day. If you are feeling that awful, I would suggest that you try to get seen right away. The doctor needs to know that you are not responding well to your meds. Hope you are feeling better soon, I know it's hard, but try not to give up hope, you will get better!!
 
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Aqua14 replied to bcinnc's response:
I totally agree with what coughy16 wrote. It won't be this bad forever!! Take heart.

Like you, I was frustrated with all the new rules I had to follow with asthma...it really restricted my life, and I was very resentful of all the things I had to avoid or couldn't do any more. Sometimes I just did the prohibited things anyway....and paid for it with worse asthma.

Starting allergy shots back in 2006 was the best thing I ever did. So many things I used to react to no longer bother me, or don't bother me as much or as long. I bet my asthma has improved about 75%, or more, since the allergy shots took full effect.

I also agree with coughy16 about getting a good allergist. My first one was lousy, but then I found my current one. He has brought me from poor health/out of shape to being in great health/fit enough to bike long distances. He's just stellar. (It helps a lot that he has asthma/allergies himself and knows what it's like!)

Hope these thoughts help. Hang in there!! Judy
 
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sgbl88 responded:
Hi and welcome to the community.

I agere with Judy and coughy16 - this will get better.

While I have had asthma my whole life, it was not diagnosed until 2000. It got severe in 2008. It took about 3 1/2 years working with a very good specialist to get my asthma controlled. Things continue to get better, but still can be a bit rough at times.

Allergy immunotherapy is one of the best things an asthmatic can do, provided allergies is a trigger which it is for most people. It took a while, but I finally reached the point where I don't keep a box of tissues in every room of the house. lol

One of the best things you can do is read all you can. Educating yourself is one of the best things you can do to help yourself. It will help you be a part of your care team.

Please keep in touch and let us know how you are doing. It may take a while, but you are not alone.

Take care and
God bless.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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bcinnc responded:
Thank you to all who have offered encouragement. I am slowly feeling better and looking forward to moving forward with further testing and treatment when I meet with my pulmonologist on Monday. As difficult as the physical symptoms can be, I think the emotional and mental has been hardest to deal with. It is helpful to know that others have traveled this journey before and that life, though it may be different, does go on. I cannot and will not allow asthma to define me. I may have to live with this chronic disease, and it may take over at times, but I have to find a way to live my life regardless and in spite of asthma.
 
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amcate replied to bcinnc's response:
I've not been here in awhile, so just saw this. The vast majority of people with asthma get better with medicines and led a relativity normal life.

I agree that the emotional and mental stuff is the hardest. My asthma went from mild intermittant to moderate to severe and persistent in 2000 or 2001. I thought if I did everything right, all would be good, but still struggled and so am only now coming to terms with the severity level. However, my severity level (and cwillie's, who is more severe than myself) is the exception and not the rule in asthma.

You are fortunate to get disability as I'm unable to get it due to the specific manner in which my state defines it (too long to go into right here), so I do the best I can. It can be hard to adjust to all of it, though, especially lose of work if you are like me (my dad defines me as "fiercely independent".) Do not worry about venting here, as I've done my share and probably much more than my share. If cold air bothers you as you go in and out of the grocery markets, you may want to try to premedicate with the rescue drugs. I spend a lot of time at home alone, which I also don't like, but due to money constraints related to asthma and then not working as much it's the best I can do.

It is easy for me to go into a sort of grieving of what could have been, and I look at wonder at my coworkers who don't get as tired as I do and wonder how they do it. I find that if I focus on what I can do and on situations I can control and put my effort there, it greatly helps. I've been making gifts (I can't afford expensive stuff, so make the gifts) for birthdays and Holidays this year....and I've made some pretty butterflies as a cat toy. I smile when I look at them...I try to use my time constructively so as not to miss things.

Both of my parents smoked heavily and I never smoked, but I guess sometimes the kids end up paying for the mistakes of the parents. Oh, well...can't change the past, so I just try to focus on the present.

On the internet, you can look up information on elimination diets. In one form, you eat only white rice, then you add in foods one at a time. If you get worse, you take out the food and see if you get better. Dairy products are the most likely to cause problems.

I was unable to do allergy shots since they sent my asthma for a ride and it wouldn't tolerate them....but I've heard they help some people. Then there is Zolair (I think...I'm referring to the injection that blocks IgE) as an alternative...but an allergist should know of all of that. It is good your general PA has the integrity to say, "I don't know" and refer you out.

Hope you find peace with the reality of it all.
 
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amcate replied to pljohns's response:
I forgot...I also have learned that no one wants to be sick and yet it is the nature of the body to eventually get sick and die. So, I've considered that part of the mental suffering may be due to an unrealistic expectation. So, I now try to be at peace with the nature of anyone's body and try to not expect it to be something it is not. Then, I try to focus on what I can control and put my energy there. Sometimes it's easier said than done, though.
 
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singmusic4u responded:
I know exactly how you feel. I'm 36 and was officially diagnosed with asthma in my early 20s, but my pulmonary doctor seems to think that I've had it all my life since I was a preemie. Anyway, my asthma has never really been controlled, always mild to moderate with never knowing what would trigger it. I too have been on meds and antibiotics (advair (now symbicort), singulair, prednisone, nebulizer every 4 hours). Every winter, especially, I get the dry hacking persistant cough that never goes away; end up in the er with asthma exacerbation and pulled muscles in my stomach and back. Just recently, I've gone to the er for asthma attack and found out I had bronchitis with an upper respiratory infection. They did chest x-ray (clear), gave me 3 breathing treatments, antibiotics, prednisone and sent me home after asking me if I've ever been diagnosed with COPD? This makes no sense to me; wouldn't this mean that my lungs were NOT CLEAR? Went to reg dr yesterday, sent me to be admitted, same er dr as before said I didn't need to be, gave me 4 breathing treatments, more chest x-rays (clear), a different antibiotic, another round of prednisone. Yet, he still asked if I'd been diagnosed with COPD or supposed to be on oxygen...I'm baffled. Then tells me that it's something in the air that I'm breathing in (well obviously)! Keep in mind my cough is no longer dry and when I try to talk I'm gasping for air, you can hear the fluid rattling, and there is burning in my right lung.
 
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Everlastingcough replied to pljohns's response:
I'm at a loss. I was diagnosed with asthma after 6 weeks of bronchitis but was told that I had asthma for 8 years without knowing due to sinus infections and bronchitis. I do not wheeze but have hard time breathing when I have an attack. I have a persistent cough for 4 months that is not going away. It has me so depressed and restricted. Cold weather and odors are factors that causes my cough to increase. Sinus infection triggered my last attack. I just want to get better as it has been a tough 4 months ongoing.

Reading these post have given me hope.


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