I have moderate to severe asthma that is complicated by GERD, and also a heart problem and scoliosis. My family by now has become a bit dryed out with support from all my surgeries, prodecures and doctor appointments. I know they try to help me but they really dont know how..and I dont blame them for that. For a long time I believed there HAD to be something other than asthma effecting me because the symptoms I was having were just atypical. Espcecially the onset of symptoms was swift and have basically persisted every single day for over a year now. I was sent to ocnologists/hematologist, ENT's, allergists to find out if I had anything else. The onoclogist thought I had lymphoma because my neck appeared swollen and I have shotty lymph nodes all throughout my body and espcially in my neck. Thank god I did not have cancer but I found out I have some cyst in my neck that but is too small to cause breathing problems. The swollenness in my neck was just my scoliosis making it look uneven. So finally I have just accepted I have to live with this unfixable condition called asthma. I was just having a hard time breathing while I was in class at my communtiy college and I went outside to use my rescue inhaler and an someone I know saw me and said "faker" and laughed...I was horrified and really annoyed but just let i blow off and didnt say anthing back to her. I realized that the image people get a lot with asthmatics is that we somehow overexagerate it so we can benefit ourselves in someway. Well anyway sorry about the ranting...

Rona-

Though this is probably not what you want to hear, but having dealt with this issue a very long time, I will try to save you a lot of grief and give you some very sound advice - the best thing to do is be supportive of yourself and not expect others including, or in some cases especially family, to do this for you. It is no more possible to "harness [another person's]understanding" any more than it is possible to make someone fall in love with you; this up to the other person, and not something you can make happen.

As far as "pressured to do better," again, only you can allow others to put pressure on you. While it might not be possible to "get better" in far as reversing lung disease goes, it is at least important to try, particularly if you can enter a pulmonary rehab program to strenghten and improve what remains. Only you (or you and doctors) can decide when to get back to work, but I can tell you it's better, and often a hell of a lot easier, than collecting disability, especially in the U.S.

Many studies have shown that asthma and depression go hand in hand, though it's difficult to determine which causes which and/or how they're linked, genetically or otherwise. While the academic debate continues, the best thing to do is treat these for what they are, chronic but managable lifelong conditions sometimes only visible to the naked eye as cellular changes under a laboratory microscope.

Living at home unable to ever get a decent paying job to suport myself, and having signed myself out of a hospital AMA this past year after being treated for pneumonia, only to go home to an absolutely filthy house and have to first clean it up before returning back to work within two hours to my regular overnight shift, I have learned not to expect anything of others, but only to expect more of myself.

If there is an "easy way" to coax understanding, I haven't found it. Best of luck to you and others in this search.

These are my thoughts and experience on this subject.

Colo88...being called a faker would indeed drive me to the edge. So sorry that you experienced such stupidity.

Never apologize here for ranting..it is good to have a safe place to rant!

Orsonwelz, yes, I am a little taken aback by your comments. Maybe you jumped to a conclusion? I do agree with you about self esteem issues and self-support plays a central role. However, I do need support of others and this is one reason I come to DailySupport. Now, regarding family members, I do count on them to understand or try to. When they do not, it hurts. This is what brought me to write this on the discussion board. I wonder how people deal with the lack of understanding of people so close and intimate to them who just don't get it.

You are right, Orson, when it comes to allowing others to control your own feelings, well they can't. I revealed I look to others for this and this indicates the huge amount of self-doubt that I feel. I'm in denial about having asthma and can't imagine my life like this forever after.

Thank you for sharing a little about you, Orsonwelz. You sound very strong and self reliant. I'm not quite there yet. I really do appreciate your thoughts.

I just wanted to add my 2 cents worth . My family wants to be supportive but they (I think) don't know they need to. My doctor isn't even calling it asthma( he says allergic asthmatic bronchitis) Because he's not telling my family I even have asthma they don't see my problem as being that big of a problem. I have symptoms everyday and use inhaler 3-12X a week. It just kills me that I have NO support from people who should be supporting me in this effort to live a somewhat normal life. It's been a year since I went to my pulmonologist and I think my asthma is just not at all controlled and No one wants to help me control it, it's really depressing and I sometimes am afraid that I'll die from this thing my doctor isn't even saying is asthma. The only support I've been able to find is online from people I don't even know and never will know. IT JUST BITES!!!!!!!

I feel your anguish, I really do! I think the best thing to do is attempt to communicate to your family, friends, doctor. And as I said in the message to you, fire the doctor if he or she is not listening to you or taking you seriously. Hire one that will.

Unfortunately, you cannot fire family and replace them. You can, however, do your best to communicate with them and educate them about this disease. What they choose to do with this information is beyond your control, but at least you tried.

I am so glad you found us here, though. Even though we may never meet each other, we are friends who care. This is so vital to my sanity right now. I hope it is for you as well.

PKU Kid-

If it's been a year since you've seen a pulmonologist, it's time to be re-evaluated, and this time by another one. There are plenty around. Get a recommendation from someone in your area, or ask for one from someone living in your region on this site.

You need to be put on an inhaled (Advair, asthmanex, etc.) steroid maintenance med, not just a rescue inhaler. Overuse of the rescue inhaler can cause your heart to go into overdrive. Pneumonia and serious complications are also real possibilities with uncontrolled asthma. Chronic bronchitis can also lead to COPD over time.

Your family will likely never be supportive whether you're diagnosed as having asthma or not, so don't pursue this by trying "educate and communicate with them." Trust me, complete waste of your precious breath. Instead support yourself by being your own advocate and seeking the medical help you need. No one is going to do this for you.

Once you find a good pulmonologist who will do the pulmonary function tests and prescibe maintenance meds, you will have a better quality of life. This is something your asthma-deaf family can't give you anyway.

By the way, I have no idea how PKU effects asthma. This is something you have to discuss with you new pulmonologist when you find one.

Good luck and post what happens.

I guess I'm lucky in some respects. I have a sister who has had Asthma for years so she gives me a lot of advice (I like "talking" to all my friends online better, though). I also have a husband who tries his best to understand but I don't think he gets it so he is actually going to my pulminary doctor with me on Friday; hopefully, I won't regret it. As for you, PKUKID, definitely go to another doctor - it seemed my primary care doctor didn't want to diagnose me with Asthma for weeks but when the third (according to him, the strongest) combination of drugs didn't relieve my symptoms, he then diagnosed me with Asthma and referred me to the pulminary doctor who did the breath tests, along with allergy testing and is now coordinating my medicine regime. It definitely sounds like your Asthma is out of control; you should not be using your inhaler more than 2x a week. Go to another doctor as soon as possible!