Most of the time, I try really hard to keep my comments about how I'm feeling (physically) to a minimum. I make a concerted effort not to go on long rants about my Lupus, it's effects, what it's like to live with it, or how I cope. Lately though I've been finding myself less and less successful in actually keeping to that habit, and maundering on at length about the disease process and what it does to me.
I would like to apologize in advance for today's little diatribe. It's going to be a long one, and it's going to be incredibly whiny, with lots of bitching and complaining, and quite probably a repeat of several things I've said at some other point over the past 2 years of maintaining this blog. I know - no one really wants to hear about such with the possible exception of fellow sufferers of my illness. But hey, misery loves company, and I've spent a lot of my time lately being absolutely miserable due to this crap.
Lupus isn't easy to live with. Even on the best of days, I'm in pain and feeling less than 100%. When push comes to shove, I haven't had a day when I actually Did feel 100% in... sheesh... close to 25 years now I guess. Granted, some days - even some years - are worse than others. These last few months have been the worst in 10 years, since mom succumbed to the pneumonia that "officially" killed her. This past month (or more accurately, this past week) has been my worst in the last 6 years, since dad had his stroke. Even when I was going through a nervous breakdown a couple of years ago due to the emotional strain of coping with daddy's health issues, I wasn't having this many Physical symptoms on a constant, daily basis that simply Did Not Go Away.
This extended flare (which waxes and wanes daily based on what's going on, what the weather is like, what work was like the night before, what I've eaten lately, and if I didn't know better the phase of the moon) started back in late February or early March. That was about the point when I first found out that the family home was in jeopardy, and started worrying about trying to save it. The flare eased up for a while, when I gave up fighting to save the house, only to start spiking again over work stresses and unsuccessfully attempting to find a new place to live. It eased up again with a change of position at work, or so I thought - at least the work stress hasn't been nearly as bad, though it's been more physically demanding, in the 2 months since I made the change there from being on the front end to being out on the stocking floor.
I've noticed though that there are certain symptoms that started back in March which have never really gone away this time, even when the flare seemed to be quieting down. This isn't the first time I've had a bout with the lupus rash from over exposure to sunlight/uv. I've almost always got a light case of the butterfly rash that is oh-so-characteristic of Lupus. It never really goes away completely with me, it just fades a bit for a few days at a time and has never been bad enough to cause scarring or look like more than a "rosy glow" on my cheeks, nose, and forehead. I'm beginning to get more of the lesions that don't ever heal, or only heal very slowly - which is something I've never had to deal with in the past with this. Fortunately, I'm NOT getting the mouth ulcers that sometimes happen in Lupus - I don't think I could deal with that at this point.
I'm tired. All the time I'm tired. Not just when I've been active, and there's some logical Reason for me to be tired. I'm tired when I wake up. I'm tired when I go to bed, even if I've slept for 7 or 8 hours already that day. I'm tired regardless of the weather, what (or if) I've eaten, or what (if anything) I've been doing even if it was no more "strenuous" than sitting at my desk and looking at the various cute kitty pics posted on Facebook by various friends. And damnit, I'm Tired of Being Tired.
My joints ache to the point of putting me in tears a lot of the time lately. Not just a little bit, that I can shrug off and tell myself "eh, it could be worse." No, this is the kind where I lay in bed, reluctant to try and move to get up, because I already hurt so much that just breathing makes me want to break down crying and simply beg someone to shoot me and get it over with. I don't. I make myself get up, get dressed, and try not to let anyone see me grimace in pain or whimper when I move. I don't succeed all that well lately, because I no longer have the luxury of living by myself, where I can do so without having to try and hide it, but for some reason I still feel compelled to try and hide it as much as possible.
I'm fed up with condescending doctors who look at me like I'm faking it to get pain pills, like I'm some sort of junkie looking for a quick fix. I Detest my current GP (general practitioner) - who has decided, in his Infinite wisdom as a non-specialist - that my diagnosis is "wrong" and that the Specialist who diagnosed me some 22 years ago Must have simply been Wrong, because... wha? Because I'm Not Sick ENOUGH? Just how Sick do I have to be before you consider me "Sick Enough," doc? Do I have to be lying in a hospital bed with tubes invading all of my various orifices, or is being in the ER a couple of times from pain, unable to stand or walk without assistance, with my legs so swollen from Edema that my ankles are the same size as my calves, and broken out in a severe rash on both calves and one arm "enough"? The desire to shake the man by his throat, and snarl at him that he should live in my body for a couple of weeks before he decides I'm "not sick Enough" is strong. I won't, because no one I know has the money to bail me out of jail when I get thrown in for assault, but it Is fun to Fantasize about.
So I wait now. I wait for them to get around to setting up an appointment with a Rheumatologist, because he wants me to go see yet another Specialist for a new diagnosis. I wait to see the Rheumy so I can finally get my intermittent leave of absence paperwork signed for my job, so I don't Lose my job (and my insurance along with it.) That has to wait for the Rheumy appointment because the GP "doesn't do paperwork." Nor does he "do" Pain Management. Which means that getting more pain meds, to try and at least stay Functional, has to wait for that Rheumy appointment as well. No, the GP's idea of "pain management" was to put me on something that's commonly used to treat Mental Disorders such as Clinical Depression, Anxiety, and Bipolar Syndrome. Great - so my mental/emotional issues are being addressed, and I have an anti-inflammitory that I could just as easily get WITHOUT a prescription and take extra of the OTC variety - but nothing for pain, nothing for water retention (his solution for the Edema was to suggest I go buy a pair of support stockings rather than to actually Treat it) ........ come to think of it, nothing at all. Nothing from the GP other than condescending looks, platitudes, and being put off until whenever the insurance company decides to approve the appointment with the Rheumatologist. Next time I see him, I'm going to have to watch myself, or I'll end up asking him "If you won't do pain management, and you won't do paperwork, and you won't actually Treat any of my symptoms, then frankly - what good are you and why should I bother coming back to you?"
Pick your fights carefully . . .
23 minutes ago