thanks jimmy (for all that info and your kind thoughts for me).
so what i hear you saying is that the doctors still think you have AS but the insurance's doctors don't think so because "no fusing", "just" inflammation.
but sounds like you get to keep taking the drugs that work for you, so you don't really care what they call it. i think i might feel the same way, if its working.
and your disability sounds like me getting my handicap parking hangtag,
the state didn't care why i needed it, if the doctor said i did, that was good enough for them. what a relief, finally someone just believing us!
that's an interesting statistic: 80% disabled (unable to work after 10 years). somehow i managed from july 1998 to september 2009 (that's about 11 years) and then essentially took 6 months off of work, but thankfully for me that was not permanent, not this time at least. i will have to make sure my husband doesn't see this statistic because this fall he was pretty much making mental plans to sell the house and move to where he could get a paid position (right now he's focussed on his art). don't know if he was over-worrying or if i was in denial. reading this stat, i think he may have been the realist and i may have been in denial about just how bad i was. i do tend to be an optimist and believe "this too shall pass" because it always does. but i've also worried that next time i may not be so fortunate to recover.
Your Doc should be trying anything to help your pain! If it wasn't for Enbrel and Lyrica, I would be stuck in bed, in agony.
and thanks for that sentiment. i do agree. yes, my GP (who is retiring next month so by default i'll be getting another) and rheumy really seem to drag their heels, but i think its because until recently they didn't see my pain. i'll tell them, but i'll be there on a good day and not a bad one, and they're the kind of doctors that have to see it to believe it. finally in the fall, the GP and rheumy saw what i've been warning them has happened to me in the past, what i've been begging them to prevent, but finally they saw it and helped a little more than normal. that's when i was able to convince the rheumy to let me try LDN and was able to get the GP to give me the flector patches. GP also allowed me to try a triple NSAID topical creme recommended by the compounding pharmacist. also was able to talk the rheumy into giving me prednisone to keep at home for an emergency, basically told him i wasn't leaving the office til we had something to prevent another free fall like i went into this past autumn. kind of sad that i was the one to have to ask for all those things (as most people wouldn't have known to ask for them, but you all have educated me well). really the only things the rheumy still won't consider are "autoimmune drugs" (besides the LDN) because we both agree that the SSZ will probably make me too nauseous the way a sulfa antibiotic did in the past, we both agree that MTX would probably not be a good drug for me due to the things i already have going on especially in my stomach (though there are people on it, i've heard enough bad things about it, i really don't want to take it, and the first visit the rheumy said if it looked to him like i had AS, i'd have to try MTX first, though other rheumies in the US go straight to the biologics. and then there are the biologics, to me, the thing to try, but that's not an idea he will entertain because.......well, i have a bunch of theories but no proof so i'll just leave it at that. but yes, until the pain doesn't make me disfunctional, i think we should be trying harder.
but with all of that said, my other doctors haven't let me become disfunctional lying in bed. the physiatrists have kept me functional and often largely with limited pain. they've sent me to PT, who in turn taught me the virtues of ice, heat, and ultrasound, along with exercises and such. they've given me trigger point injections, SI cortisone injections, prescribed TENS and IF Stim, prescribed zanaflex, prescribed lyrica (which did not work out), prescribed the cox2 inhibitors (which did not work out). and the podiatrist and endocrinologist and orthopedists that gave me cortisone wrist injections have all been wonderful as well. the gastroenterologist and dermatologist also very helpful. i think so long as you have at least one doctor in your court, then you can get through it all. but i do find it ironic that the profession that treats what all the other doctors say i have, have been the ones to not be very helpful. but thanks to all those other doctors, i'm largely getting by.
