Thursday, June 28, 2012

Howling of the Wolf

Yes, children - this is going to be a long one.  I've been having to cope with a flare up of my Lupus for the past couple of weeks, which doesn't seem to be going away on it's own despite my best efforts, so I need to vent about it for a while.  Bear with me - maybe you'll learn something in the process.

Systemic Lupus Erythmatosis.  Sounds nasty, doesn't it?  It should.  It is an autoimmune disease complex, loosely related to such little gems as Rheumatoid Arthritis and Diabetes in that it is retro-viral, life long, has no cure but can be (nominally) controlled, and makes your life miserable if you happen to suffer from it.

What causes it?  They aren't really certain, even though research has been going on for a few decades now.  They know there are genetic factors - you are more likely to come down with it if other family members also happen to have it.  Certain genotypes are much more prone to it than others - with the Negroid races being at the top of the list, followed closely by those with Native American bloodlines, then Hispanics, then Euro-Caucasians, then Orientals.  They know there are environmental factors - simply because not everyone in a family with a predisposition to it eventually has it.  They know there are emotional factors - stress makes it worse, which sucks for the sufferer because having a chronic illness Produces stress on certain levels.  They know there is a hormonal factor - 7 out of 10 diagnosed with Lupus are females between the ages of 16 and 35, during the prime child birthing years, and 6 out of those 7 will have various problems with their female cycles that run the gamut from irregularity to endometriosis.  Of the 3 men who are diagnosed, at least 2 of them will likely have several female family members who also have (or show signs of, but are not yet diagnosed with) SLE at some level, and all 3 are likely to show signs of decreased testosterone/increased estrogen/progesterone in their blood work.  While it becomes somewhat easier to manage once you're out of the childbearing set, it doesn't discriminate and can still affect those who are slightly younger or much older than that age range.  You're simply Most likely to come down with it during that age range - even if you aren't necessarily Diagnosed until you're post-menopausal.

What does it Do?  That's perhaps the most difficult question to answer in layman's terms.  The disease doesn't strike any 2 sufferers in Exactly the same manner, say the way that Parkinson's or MS follow a rather set and highly predictable course.  There are groups of symptoms which come and go randomly, affecting each person differently, some more severely than others.  The most common symptom that nearly everyone displays (or at least notices in themselves) at some point is what is referred to as the "butterfly rash."  It shows up as redness on the cheeks, nose, and frequently forehead areas, often being mistaken by the unknowing for a "rosy glow of health" when in fact it's a good indication that the person is sicker that day than others.  Pain and swelling in the joints, mimicking arthritis, comes and goes and can't be guaranteed to be in the same joint even all of a day that it happens to hurt - pain might start in the morning in one shoulder, and over the course of a single day move around from there to a knee or elbow or hip - you never know what area it's going to cause a problem with  until it does and you never know how long that pain is going to last or how intense it's going to be until after the fact.  And yes, multiple areas can all hurt at the same time, to a lesser or greater extent.

The simplest explanation I ever heard for Lupus from a medical professional was years ago, not long after my mother, grandmother, and myself were all diagnosed by the same Rheumatologist who specialized in doing Lupus research (mostly because he had it himself!)  What he told us by way of explanation is this:  you have essentially become allergic to yourself.  You see, the immune system, instead of not working at all, has become over active.  It works, perhaps too well.  When there is not a bacteria or virus in your body for your immune system to combat, it turns on your own organs - skin, muscles, nervous system, circulatory system, connective tissues, you name it, it becomes a target for the overachieving immune response.  While it's not a completely accurate description, it's the best I've been able to find that isn't highly technical.

You don't Look sick.  You look healthy and vital.  Unless you happen to be dealing with a specialist who has experience with Lupus, who knows what to look for and which specialized tests to run, you'll likely be misdiagnosed as a hypochondriac, or the doctor will simply scratch his head and keep running tests and tell you "I have no idea - all the tests are coming back negative, so you Should be Fine, but you're clearly Not - unless you're lying about your symptoms."  I've heard that one from enough doctors in the years since my original diagnosis, now that the specialist retired a bit more than a decade ago, that I got to the point where I avoid going to the doctor at all if I can.  I'd rather deal with the pain by managing my stress levels, staying inside during the daylight hours, avoiding any sort of strenuous outdoor activities (even though it has meant giving up a Lot of my favorite hobbies) avoiding certain foods that I love, and making damned sure that I live my life within a rather narrow range of "comfortable" temperatures - than deal with having doctors accuse me of lying, faking it to get drugs (which are largely ineffective in the first place) or being a hypochondriac or a mental patient rather than actually having something Physically Wrong with me.

It isn't easy to diagnose.  Back in the late 80s, when all of the women in my immediate family were diagnosed, there was a list of 11 symptoms used to decide whether it was Lupus or something else.  A patient had to display 9 out of those 11 symptoms regularly and consistently for the diagnosis to take place.  Only 3 types of blood work were in place to help determine whether or not the diagnosis was accurate - SED rate (sedimentation rate of iron in the blood - practically always elevated in Lupus and Fibro or Poly myalgia patients), an ANA or Anti Nuclear Antibody test, and a false positive for syphilis.  Many doctors these days take a look at the list of symptoms, run an ANA test during bloodwork, and use that to decide.  It doesn't always work though - because some family groups (my own, for instance) show all the signs of Lupus EXCEPT being ANA positive.  We have what is referred to as "Atypical ANA Negative Lupus."  Atypical because with the exception of a few rare family groups, a positive ANA screen is practically universal in Lupus patients.  It's been so long now since I've bothered with a specialist that they may have more accurate tests in place these days, or an updated list of criteria symptoms.  I can only hope that such is the case.

It brings with it a whole host of other (relatively lesser) problems as well.  Besides traveling pain, localized swelling in the joints, issues with the circulatory system, an inability to tolerate much UV without getting desperately ill (which makes summer a real bitch, and means that I subsidize the companies that put out seriously high SPF sunscreens) there's also things like Shogren's Syndrome - aka a chronic dry mouth, because you don't produce sufficient saliva.  And of course the dental problems that This creates.  Then there's Renaud's Syndrome, which causes circulatory problems specifically in the extremities of the hands and feet, leading to chronically being cold in both, and frequently having a blue tinge to the skin of those areas when the winter weather sets in.  And then there are the days when the circulation problems cause me to feel like I've been dipped in acid - from the inside out - and if I could just unzip my skin and scratch the Inside portions of it, it would help.  I take a lot of benedryl on those days because it acts much like a severe histamine reaction.  Or the days with migraines that make it feel like my head is trying to implode.  Or the memory issues, at least in short term memory storage, though I've been lucky and unlike mom it hasn't (yet) affected my Long Term memory capacity.

My case isn't what could be considered "severe" in my experience.  Having watched my mother go through this crap, and have a much worse time of it than I've had, I know just how lucky I am - and how much worse it could be if it decided to get really nasty.  Then again, I learned a lot from watching mom have to deal with this crap, and studying along with her to find out what could be done (other than massive amounts of chemical "help" that I didn't want to deal with the consequences of) to control my disease and keep it at least somewhat manageable.  Watching her I learned a lot about what Not to do, and what to make Sure that I do, and how to cope when management doesn't seem to do the trick.  I have to admit though, I've long since gotten tired of hearing the "but you don't Look sick" comments or the comments about makeup (specifically blush) that I'm Not Wearing (because my butterfly rash is out in force.) 

Best are the ones who make the rather obnoxious assumption that if I would just Do more and Get Out of the House More that I would somehow feel "better" than I do.  I think those are really the ones that I'd most often like to bitch slap into the next year.  Oh yeah - I'm allergic to the UV of sunlight - I can't go out in the daytime without massive amounts of sunscreen and/or clothes that effectively cover me from direct sunlight regardless of the weather conditions (though I frequently ignore that last one, much to my own detriment, especially in summer when it's hot out) - yet here you are, assuring me that getting out - into the sunlight which I'm ALLERGIC TO - in order to Move Around (despite the fact that my muscles hurt so much that I lay in bed for several minutes after I wake up, just gathering up my courage to move at ALL without whimpering or crying from the pain) is somehow going to make it all Better?  Are you on Crack or just Terminally Stupid? 

Some of you are no doubt asking, right about now, "if it's that bad when you go outside, then why do you keep going to SCA camping events, which are by necessity outside?  Isn't that counter productive?  Or does it just put the lie to you being all that bad?"  I keep going for several reasons.  It's stress relieving - which means that it helps me manage the thing that is Most likely to cause me to have a major flare.  I can't allow the disease to win Completely - if I stop doing Everything I enjoy because of the disease, then life is no longer worth living, and I have no reason to stick around on this mudball we call Earth.  Going is not without a price.  When I was in my 20s, and into my very early 30s, I went to events rather frequently.  The older I've gotten, the more important it has become to me to carefully pick and choose which events I will attend, to avoid some of the consequences of going.  I generally go to only 2 or 3 camping events per year these days, in the early spring and late fall, when the temperatures are going to be their most mild, and the sunlight isn't as intense.  I put on sunscreen before I leave my tent during the day, and I stick to the shady areas when at all possible.  And even with that, I still pay for the couple of days out in the woods when I get home, with increased muscle soreness, achy joints, increased headaches, and a much more prominent butterfly rash (which people mistake for sunburn from being outside without enough sunscreen.)

It's something I've had to learn to live with over the course of the past 20 odd years.  I don't like it, it keeps life from being nearly as enjoyable as it Could be, if I didn't have a chronic illness.  But it's not going to go away, they aren't going to suddenly find a miracle cure for it, or inform me that it's simply "disappeared."  It's a fact, and is going to remain a fact until the day I die.  While I won't die From it, I will die With it, just as I have learned to live With it.  But if this little discourse does nothing else, I hope it will make you take a moment and think before you make those Ever Helpful suggestions to someone with any of the "invisible" illnesses.  Think about what they cope with daily before saying something stupid.  That moment of thought will possibly keep them from getting even more stressed out - and might just save you from a punch in the nose if the "suggestion" or comment is the straw that would have broken the camel's back.

No comments:

Post a Comment