Re: Frustrated and feeling hopeless

[Guest guest]

Mindi,

I don't have asthma, but have fought nasal polyps and aspirin sensitivity for

close to 40 years. I don't like to take Predisone because of the side effects,

though I will take it if I get miserable enough. You might ask your doctor

about using Flovent in your nose. My doctor has me on it and it helps manage

the polyps better than anything else I've used, except Predisone. I know some

of it is absorbed, but not nearly as much as taking Predisone. Good luck.

Diane in Florida

[Guest guest]

Well said!I relate so very well as I am certain most on this group doI tend to read posts and get a bit overwhelmed and even frightened by this disease but decide to keep chin up and realize it could be a whole lot worse--I so desperately miss my sense of smellIt's been gone for good since December - I'd love to be able to smell a summer peach or cantaloupe or even suntan lotionBut at least I can See the ocean you know:-)Thanks for your postIt really is good to know I'm not alone in this:-) Sent from my iPhoneOn Jul 7, 2011, at 9:24 PM, joan harvey <thomyris7@...> wrote:

Hey Beverly, thanks for this. You beautifully describe the negative effect this disease has, and the effort we put into trying to solve it. It is so helpful to hear other people's stories and how all of us are struggling to different degrees to find ways to deal. And how it is more difficult because it has no context for most of the world.Thanks all for the time spent contributing here -- it does help to know that others have to cope with the same issues.All the best,JoanOn Jul 7, 2011, at 6:00 PM, anaturallearner wrote:

Wow Mindi, my heart goes out to you - HUGS. That is a very hard road to travel and it is only naturally that you feel depressed.

I felt much the same way from the age of 19 to my mid 40s when my symptoms started to calm down. Could have been menopause, could have been a combination of singulair and seretide, could have been me taking the disease more seriously and changing a few things in my life, especially reducing the amount of 'normal' stress I experience... who knows, I don't, and neither do my doctors. When I stop taking the drugs the symptoms start to flare again. If I try to work more than an hour or so a day they flare. If I stray from my low allergen environment (even though I'm not allergic to anything other than aspirin) they flare.

I had to give up taking aspirin - kept needing different ops and the last time I tried to desense I reacted so that was that.

Desense didn't seem to make much difference anyway and my polyps seem to be growing at the same rate even taking singulair. Since starting the combo of singulair and seretide though my asthma has finally come under control.

My theory is that inappropriate response to stress is the cause of the inflammation which gives rise to samter symptoms. I am a LOT better since removing as much stress as possible from my life (though depression is still a huge issue). I am lucky - I don't need to work as my husband supports me and health care is virtually free in Australia so we don't have money problems to worry about. I don't socialise - a couple of days being with others and I start to slide, the sinus, asthma, depression, tiredness and muscle weakness return.

It can really really hard chasing down and removing things which may be causing the symptoms - a mind bending and frustrating journey. I did that for a couple of decades and felt like I was going insane. There are SO MANY things that trigger symptoms!!

This disease does have a debilitating affect on many of our lives. There is little understanding or sympathy for it from friends, family and colleagues. On my worst days people would even remark at how well I looked! That didn't help...

You are not on your own - you are not crazy - it is okay to be depressed and miserable about this. I am very grateful for groups like this because reading everyone's stories reminds me that I'm not alone, not the only one and that sharing our stories does make it easier to handle, even if it is impossible to nail this disease down, or find 'a' cure which will work. I think we're getting closer though and more doctors are taking it seriously.

Beverley

[Guest guest]

My sense of smell has come back rarely in the past 25 years - I have only

memories of smells for most things and some I can't remember at all. I even eat

food I have never smelled! LOL

What has bugged me more is the physical fatigue that comes on suddenly without

explanation. I will wake up full of joy and promise for the new day, go to lift

something and have no strength. :-(

And worse than that is the depression. People say that anyone with a chronic

illness will get depressed, but some days I can be really fine and happy and

whammo, suddenly depression knocks me for six. And other days I can feel it

coming, like a cold virus, slowly but surely sinking down into the symptoms.

I miss my sense of smell for sure. But it no longer gets me down. Except on days

when everyone has to mention smell in every sentence!!

cheers

Beverley