Hi Meegs,
I'm brynn and I moderate some other, mostly unrelated forums here at HW. I'm just here on this board for a moment, looking for a certain post which a member asked me to read (long story). But I saw this thread and thought I'd add some comments. I certainly can understand how you want to get off the steroids. There is something ringing a bell for me, upon reading your symptoms, but I can't put my finger on it...
...probably because I have almost no experience with these things, meaning lung and sinus problems (except for my mom died of copd). But I have a great deal of experience with serious illness that can be neither diagnosed or treated adequately, in general. You don't mention what you think about
any of the partial or temporary diagnosises which have been made along the way, or about
any of the attempted treatments -- other than hating the steroids and maybe feeling fearful and definitely frustrated. What I mean is, it doesn't sound like you have taken the lead in directing (what I like to call) your medical team. It sounds like you are not the captain of your team.
And that, I don't mean to sound corny, or accusatory. I live with chronic pain, the cause of which has not, and cannot by available medical technology, be identified. It started when I was a teenager, only mild pain which I could keep completely under control with exercise. But it became gradually worse, until 20 years later, it was so bad that I could no longer work, and I was forced to file for disability. That was 12 years ago, and 6 years ago I finally got treatment! Yep, all that time I was in pain, but the deal with pain, is that if Drs don't know what's causing it, they 1 - aren't going to treat it, and 2 - are going to tell you it's all in your head. (although to some extent that's true of all illness/conditions) Plus I have a lot of seemingly unrelated symptoms, which further led Drs to believe the symptoms weren't real. And if I hadn't taken charge of the situation, well, I would have ended my life years ago ;-)
So here's what I mean by becoming the captain or leader of my team. I look at all my current Drs -- primary care (PC) plus all the specialists, physical therapist, psychotherapist, maybe certain nurses, physician assistants and MYSELF -- as a team. A team put together for the only purpose of making me better, and I'm the captain or leader. And I was more or less forced into the position. Like you, I had been through the mill with the medical community, doing whatever I was told, believing whatever the Drs would tell me (even that it was my fault) and hoping against hope the next Dr would know what to do. But I eventually became suicidal, with my fate held completely in the hands of professionals who clearly couldn't care less. So I had to put my fate in MY hands, where it belongs. I had to learn to be assertive!
First I started learning as much as I could learn about
my symptoms, what they mean together and what they mean individually, about
whatever partial or temporary diagnosis Drs had suggested, and about
whatever *I* could figure out MIGHT be the right diagnosis, based on whatever I could learn. Personally, I kind of take this to the extreme, because I tend to be a bit of a science nerd, and actually enjoy reading medical articles about
research and stuff. But one can still learn a lot for themselves just by reading non-technical articles (the health article in popular magazines and newspapter) as well as books (you can usually find books about
certain illnesses in bookstores), and of course, the internet.
Then I had to learn how to be heard by my Drs. If they brushed me off (which as soon as I started to not go along with them without question, they kicked up the brushing-off by another notch), I had to find the courage to ask them to do whatever I had asked anyway -- a diagnostic test or scan, and experiment with a certain medication, whatever. If it was something I had read about
which other people with my symptoms had been successful with, I had to try it!
And I tell ya', it's been a long, rough road. But 6 years ago, I finally hit my stride. I finally realized that every treatment decision I let a Dr make, by him/herself, fails. And not EVERY decision we make together is successful, but many are. And every decision I allow a Dr to make alone, does definitely fail. And the reason is that I know my body better than any Dr can, and how it works. Drs may know how human bodies are "supposed" to work, and when someone has a known illness, which can be definitively diagnosed and treated, I'm willing to turn them loose and let them do their thing. But when we have problems which cannot be accurately diagnosed, all Drs can do is guess, and without that intimate knowledge we possess, as residents inside our own body, their efforts are destined to fail. There is something about
our experience of knowing how our bodies act and react, which makes us eminently qualified to have the last word on treatment. And just to be clear, I'm speaking of cases where an illness or condition can't be diagnosed -- a lot like yours!
Ok then, I'm starting to get carried away. The only concrete suggestion I could make, is to take an antihistamine 24/7. I don't know, maybe the Nasonex you're taking contains an antihistamine. But if not, it will definitely help with that dripping. My main point is that maybe it's time to take some control over your medical treatment. Learn as much as you can about
your symptoms, and pay attention to what your body is telling you! And this is a good start, posting messages where other people might know something more about
it. As I said at first, something is sounding familiar about
your situation, and if anything else comes to me, I'll post another reply here.
Hang in there. Good luck
