Sorry I didn't post sooner but posting from my phone is a bit of a pain and I've just been too blasted tired by the time I've gotten home these past few days.
What is funny is, at the doctor's office the assitant asked me where my energy comes from (this was the day after almost losing the car in a rain storm and having a meer 4 hours of sleep) I hadn't more then a tiny bit of caffine all day just meds and a lot of gatoraide/healthy food. Now Asthma meds, granted, contain adrenoline but I've always just kinda been that way...high energy and then crash. That and I'm a pretty tough little thing who just kinda keeps going until the task is done. I'm still not sure how I do so well with one side of my breathing half clogged most of the time, maybe its my training as a singer...just wish I had any breath capacity to speak of.
Which brings me to a question what is Acapella? To me its uh singing without music, which I highly doubt is what you mean <img src="i/expressions/face-icon-small-wink.gif" border="0"> I've seen the term bandied around about here but don;t really know. What is it, where would I get it, do I need a RX, and how much does it cost? Is this similar to the vibrator (roflol) that was suggested? Uh any particular type of vibrator and I'm assumeing it should be one only used for this purpose <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Still haven't heard back from blockbuster, going to look into your ideas alyssa as well as home depot which has also been mentioned to me. BTW your blog was one of the things that made me realize I just might belong here, only time will tell but it is almost scary how thier medical history sounds like mine. My location is earlier in the thread<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lemon the problem with just going to the cf clinic is I'm still figureing out how to even identify them, locate them, and talk to them,all without getting a medical history insurance companies can auto decline me for. I've already had problems with private insurance in our family over something as simple as mild asthma and my husban's minor back problem.
Chip I would indeed like a referal to a pulmonologist but I have to move slow and do things by the book so to speak, doctors don't usually like being told what to do even my educated lay people <img src="i/expressions/face-icon-small-smile.gif" border="0">
So far I have a clinic doc who is at least giving me albuteral, amoxicillian, and asmanex which admitedly is an improvement on doing the best I can with the assistance of the internet, my innate self-knowledge, a headful of random information, and helpful pharmasists.
Chip you asked a very good question and I've thought, really thought, about my answer...I'm not used to opening up to people or admitting to illness. I pretty much learned to limit symptoms and go to school even sick...it was far better then staying home. Read below for my answer but warning its long, rambly and may not even make sense. I could sit here and edit the damn thing but frankly I'm tired and its bed time so I'm just posting make of it what you will <img src="i/expressions/face-icon-small-smile.gif" border="0">
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As for dealing with the knowledge but uncertainty of my possible condition it feels decidely odd (except that I kinda suspected mild CF years ago just couldn't find it among real conditions and wasn't sick enough. Its either Cf or something adrenal and Cf fits more of the oddities in my life better..of course I could be totally wrong and should be looking for something I've never heard of <img src="i/expressions/face-icon-small-smile.gif" border="0"> On the other hand if I have an adrenal issue apparently it may issue a false possitve on the sweat test...lol.
Part of me wants to go back to just not worrying about it. Live my life, accept the perm congestion, ignore the colds that almost go away. I'm basically healthy and pretty darn tough. A determined, high energy person and a survivor. Sure I'd like to have both sides of my resperatory system in full working order, but I really don't like doctors and drugs...I could just pretend its nothing and keep going. Now that my long term suspicion is something that can actually be diagnosed and maybe also explain why the diet my body asks for is so different from what my mother thinks is healthy? Why animals lick my skin and I'm always craving salt. Why water literally makes me ill? These things are srtrange and I refuse to believe they are just in my head the reactions are far too long term and physical.
A few things have changed, I give myself permission to be sick now and take off work if I'm sick. Sure I only talk about Asthma, Allergies , general resperatory sensativity etc but I admit a problem and that is a change for me...I've even told mom about having Asthma (Her reaction is enough to tell em not to talk about CF unless I'm sure). I try to make sense of the conflicting health guidelines and what my body tells me. I don't know why I crave salt, why I basically get tremors when I don't have it and get horribly naseous from water...I just know that these things are. Just like I don't know why I can hold my breath well underwater and do reasonably well even with just just one side of my resperatory system working and yet not have the force to clear a snorkel of water, sing effectively (I want that back so badly <img src="i/expressions/face-icon-small-sad.gif" border="0">) or clean out my resperatory system.
I think about the odd dicotomy of ALWAYS being thin, even underweight. Now with a desk job, reaching the big 30, and sometimes being forced by circomstances to eat things may body really doesn't want (mostly bread which I rarely ate long before it was fashionable)...I actually could stand to lose about 15 pounds. Thinking about a diet for the first time in my life is strange, I've thought about giving in on some of the things I eat maybe Mom is right but then I look at the CF diet and I think I agree with those of you that say unhealthy bulk just for bulk not good unless really desperate. Eat a lot and gain weight but unhealthy artifical caleries really aren;t going to make you healthy. For me its getting rid of the unhealthy crap that has crept into my diet in the working world and some excersize not a diet that I need.
I just want an answer I don't want to be deliberately stubburn about nutrition and I want to be healthy...if It means I have to have something like CF to finally make these problems go away...well burying my head in the sand and avoiding diagnosis isn't really going to help me is it? And if I have some other medical oddity how is not knowing really helping me?
I'm definately not normal, now to know why ,to have a diagnosis made, healthy dietary requirements figured out, breathing issues solved and hopefully a return to complete health and fitness. It just sucks that I'm done with denial mostly and ready to find out...and I still can't <sigh>. I am a guideable person but when certain pieces of standard advise feel so completely wrong I just can't follow blindly. I've had far too many spells of dizzyness, cold sweats, stomach pain, nausea, dry heaves and tremors from trying to eat the kind of low fat, low sodium, high orange juice diet my mother always wanted the family on when I was a child. My childhood is filled with nights waking up shaky and knowing I HAD to get downstairs and find some salami or chips soon or I would get worse. And the many miserable nights before I finally made the connection.
So in conclussion. If I do end up with a Cf diagnosis in some ways it will be a relief...the way I, seem to be, will finally make sense. I know the standard nutritional guidelines are WRONG for me I feel it in every fiber of my being and well if I have Cf thats kinda a license to eat the way I think I need to...though a nutritionist will definately be allowed to guide me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> If its not CF then well there HAS to be a reason for the way I am and wrapping my breathing issues in one neat bundle with the salt/water/etc thing would be rather nice. No more weird mystery that makes no sense...just one diagnosis that I actually fit mostly in real treatment guidelines for <img src="i/expressions/face-icon-small-smile.gif" border="0">
Whatever the result is I am "SearchingforAnswers" oh and insurance <img src="i/expressions/face-icon-small-wink.gif" border="0">
