Kinda Glad I Have Lupus…

Today something happened that actually gave me a reason to be glad I have Lupus.

I can blame it instead of old age.

Several months ago, I noticed my best friend had a pair of OH!-so-cute glasses. When I asked her about them, she told me they weren’t prescription, but reading glasses that she had gotten cheap at Wally World (my term of endearment for the store that has everything, including the weirdest people on earth and a kazillion reasons to invoke Shopping Road Rage). I liked them so much I wanted a pair of my own. And I had to admit that reading the teeny, tee-nine-ee, itty-bitty print on the unbelievably small labels on eensy little pill bottles – the fine print at the bottom that always finds a reason to be important and so, MUST be read – had started to get pretty challenging lately.

So on my next trip to Wally World, I picked up a pair of stunningly cuteĀ glasses for myself. I was actually a little bummed that I didn’t get to wear them more often so I could show them off. They were great for magnifying that tiny print, but when looking at anything that wasn’t very close AND very very tiny, I couldn’t see at all. My eyes were still happily youthful and useful without glasses. So the cute little glasses went into a slip cover and lived inside my purse where no one could admire them.

Until tonight.

Tonight I was even more of a couch potato than usual. I somehow got a few annoying little warts on my feet some months ago and have been battling them ever since. They weren’t terrible, each cluster was less than the size of a pea, but it was enough to be thoroughly irritating. I’ve been fighting them with over the counter stuff, and managed to get rid of a few of them. However, a few managed to survive no matter what I did, and they were starting to get a bit painful when I walked. Well, not painful exactly, just kind of like I had a little something in my shoe. Constantly, every day, every step, step after step after step. It was starting to be maddening, and I am already about half off kilter as it is. So this afternoon the doc scraped them, which didn’t hurt a bit even without any sort of anesthetic, but then he froze them. This was NOT the over-the-counter freeze stuff, but a middle-of-the-Antarctic, would-put-icicles-on-a-penguin’s-cloaca (that’s where birds keep their unmentionable parts, so I assume a penguin has a cloaca like all birds, but then again, penguins can’t fly like most birds, so, ummmmmm…huh – guess I should Google it, but truthfully, I really want to know that much about penguin testicles), major league can of Freeze ANYthing Off. The doc told me as he did it that basically, he was giving me frostbite in each of those spots.

Frostbite is a perfect example of a paradox, because it BURNS like sulphuric hellfire. Ow ow ow, ow ow, ow-ouch. Sheesh. The only saving grace is that the burn fades pretty quickly as the skin and deeper tissue actually becomes frozen and unable to feel. So I breathed a sigh of relief. Until I stepped down off the table and put weight on my feet. Oh, the deeper tissue was still frozen, but under each of those little bandaids was a spot of skin scraped to the point where the doc drew blood – two bloody little spots on one foot, three on the other, all on various parts of the foot so that the only way I could walk was to put all my weight on the ball of my left foot but only on the little toe side, and the ball of my right foot but only on the big toe side, and absolutely no weight on either heel. Try walking like that some time, keeping in mind that even when you succeed in getting the weight only on the correct spots, you still get spikes of pain from the sore spots because the weight puts stress on the skin of your foot and pulls against the sores anyway. It isn’t as painful as putting weight directly on the sores, but it is enough to make you involuntarily emit “ouchie” kinds of sounds and every 3 or 4 steps, you wind up quickly hopping onto the other foot, only to cause more pain on the other foot. And all of this is in public, so you are doing it amidst odd stares and people grabbing for their phone cameras.

I managed to get to the car and up the stairs (THAT was fun, but at least no one except my husband, the one person on earth about whom I care whether or not he finds me sexy, was around to witness it) and onto the couch, where I stayed as much as humanly possible. Not long after dinner, my daughter and my husband both went to bed, as they rise very early. I am exhausted and wanted to follow them, but the frozen state of the spots on my feet fully wore off, leaving me to feel the full brunt of the deep tissue that is now thoroughly irritated with me for letting the doc give me frostbite. So I stayed up watching television while I conversed with these spots, assuring them that the treatment was necessary, but we got caught in a loop where I apologized but explained it had to be done, then they said it simply hurt too much to be therapeutic, so I apologized and explained in more detail, but they replied pretty much the same way.

Eventually, I tired of the television and decided to check Facebook, so that maybe I could start a conversation with someone other than the aptly named SORE spots on my feet. Instead of finding reprieve, I quickly went from mildly annoyed to positively horrified.

I could not focus on the words on my screen.

No matter what I did, how close I pulled the phone to my face, how far away I held it, how much I squinted, nor even when I closed my right eye (which is far worse than the left), I could NOT focus on a single word. Literally shaking with the sheer horror of the situation, I reached for the only-for-the-tiniest-print-on-earth reading glasses. I put them on. My horror only grew when I looked again at my phone, because I suddenly was able to read it with ease. {creeped out shudder}

I recently celebrated my 49th birthday. It appears my body is already working on making sure I fit in when I become a quinquagenarian (meaning someone in their 50’s – okay, so I did Google that word, but it was one that I sort of knew; I would have mistakenly said “quintagenerian”, though – either way, it’s kind of impressive…ok, so I don’t get out much.) Quinquagenarian, and my body is starting to reflecting every last year of it. Terror rattled through my bones. Lupus and other chronic diseases have given me aches and pains and reduced me to walking with a cane, sitting in the handicapped aisle at the movies because being confined in those little seats for two hours would turn me into a stiff, immovable thing that walks like Frankenstein’s monster, and sundry other little annoyances that should only happen in the winter of life, but still my mind has not wrapped itself around me being much older than maybe 30. Thirty is a good age. There is still plenty of youthful exuberance, energy, and strength, but you’ve learned enough about life that you generally can handle whatever life throws at you. Not perfect in either the physical or the mental regard, but there’s a good balance going on.

My brain has never accepted that I’ve been around quite this long, but tonight those reading glasses brought more than the words on the screen into focus, and I suddenly found myself trying to accept a fact I’ve been trying to ignore. Sure, I’ve been old enough to be protected by the Age Discrimination Employment Act for some time now, and I am dangerously close to being able to apply for membership in AARP, but those are just words on a page somewhere. This was words on a screen I used to be able to see, but now my eyes were too old to see them on their own.

Suddenly, though, a thought dawned on me, a ray of hope…Lupus. It’s the Lupus!!! It isn’t my age; no, it can’t be. But it easily could be Lupus inflammation in my eyes or a side effect of my meds (like many Lupies, I take Plaquenil, which is notorious for causing eye problems). After all, this is an issue that popped up suddenly. I was reading Facebook on that phone earlier today (or was that yesterday? or even the day before? Ratsoplatz, my memory is going too…hey, that’s also a Lupus symptom too: brain fog!), but suddenly tonight I need glasses. (I’m ignoring the glaring fact that I had been watching television for a long period just before looking at my screen, so the problem is very likely that my eyes couldn’t re-focus to the close up letters, which is a very definite sign of aging eyes.) No, no, sweep such thoughts away!! It’s the Lupus, I’m just sure of it.

Tomorrow I shall make an appointment with an eye doctor, and I will definitely, clearly announce that it is the Lupus. Yep, that’s it. The Lupus. That wrinkly skin sagging under my chin? Oh no, that’s a family trait, a unique yet alluring feature in all the extraordinarily youthful female members of my family, not a sign of aging, oh no. No, no, no. Far too youthful for definite signs of aging. It’s the Lupus for sure. Yep, yep, yep.

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A Rosenberg is Not a Rose; A Persona is Not a Person

I wish that the chronic illness part of Robin Williams’ death had gotten more attention. Living with daily pain and ever-increasing lists of symptoms, diagnoses, and meds is a heavy burden to bear, and can be devastating. A few news outlets looked back on interviews from the last couple of years, and found evidence of uncontrollable movements, significant weight loss, and other signs of illness. The general public still does not know, and never will know, just how long and badly he suffered or what pain greeted him every morning and slept with him every night. Looking back at taped interviews, we can now see the signs that he was ill, but no one noticed at the time. He looked fine. He didn’t look sick. You simply can have no idea how often lupies hear that. Friends who are trying to talk you into going out tonight: “You don’t look sick.” Family members who are exasperated with you for not doing chores or participating in family events: “You look fine to me.” Even doctors, who frequently doubt that those with chronic illness have anything more than hypochondria: “You don’t appear to be suffering from anything significant.” Lupus and many other autoimmune diseases are slow and silent. They have few outward signs. They wax and wane, flaring then going into remission without warning. Often, the remission lasts only a couple of days, where a flare can last for months, even years in some cases. Often, when I suddenly get a good day, I start thinking maybe, just maybe, it really is all in my head like so many have said. I know that I finally have an official diagnosis (ok, diagnoSES, as I have more than a dozen total), but maybe it is just a light case and I’m just being a whiner. So I scold myself and resolve to correct it immediately: “I just need to get off my plump behind and lead a normal life. I can’t lie around feeling sorry for myself. If I just get up, get dressed, and get out there, there is no reason I can’t have a normal job, do normal chores, and lead the life I used to lead.” I even make plans for a job search. After all, it would just be an office job; it’s not like I’d have to do physical labor.

Then I wake up at 4am, already halfway in the mad dash to the bathroom to throw up. I spend the day losing the contents of my stomach and bowels in trip after harried trip to the bathroom. I haven’t been able to keep any of my pills down, so my blood pressure is skyrocketing, my joints are refusing to work, and my pain level is enough to curl me into a pathetic fetal ball. By 3 or 4 pm, I’m becoming severely dehydrated and have pain everywhere, plus various symptoms that might or might not be serious. The thought of going to the ER crosses my mind and I am immediately horrified. This is a common reaction among lupies to the thought of a potential ER trip. We get a mixture of unpleasant reactions in the ER. It is surprising how many doctors do not understand lupus. As a result, we often get ER docs who believe we are just drug and/or attention seeking, or that the illness is at least mostly psychosomatic, that we are hypochondriacs, and sometimes, that the problem is Munchhausens (a mental illness that causes the person to purposely infect themselves to get attention or other reasons). Even with official diagnoses, doctors and nurses get such ideas, then treat the patient like some kind of criminal. Doctors who actually know how elusive our disease can be are sympathetic, but often wind up telling us the problem is “just a lupus thing”. It is frustrating to say the least, and often even humiliating. A big part of the problem is that basic test results often don’t show much even though the lupus is flaring quite badly. I’ve had tests that are positive but “not all that” high or low, so they get pushed aside if not ignored completely. Two days later, I’m back in the ER in critical condition. If I could’ve gotten the docs to pay more attention when my test were “only slightly” off but I KNEW something was wrong and was very vocal about it, I could’ve avoided getting so sick that I blacked out during my next ER trip and woke two days later in ICU.

Ha. Apparently on the scenic route back to my point, I veered off down the block to do a bit of window shopping. So, I’ll meander back toward the original path. Chronic illness is a heavy burden, and very likely contributed to Robin Williams’ death. Those who bad-mouthed him for committing suicide were out of line whether the chronic illness was part of it or not, though, as they did not know the man any more than they know the “Most Interesting Man in the World” from the beer commercials. They felt they knew Mr. Williams because they have probably spent more time with him than they have with half of their friends. That kind of face time makes our relationship with celebrities complicated, to say the least. Respect and admiration can feel very much like love, while disapproval and aversion can easily be portrayed as personal hate.

I suppose that if I want to embrace the love and feel warm at heart when most show support, that I should also embrace the hate when it goes the other way. I choose not to, though. Love encourages wonderful acts of humanity while hate all too often brings destruction. So I reject the hate even though I accept the love. Another celebrity died just recently, and her death has drawn far more bile than she deserves. Her persona was nasty and insulting because that was the source of her comedy. She rarely showed a side populated with humanity and compassion, so there is a popular assumption that she did not have one. Unfortunately, that assumption has led to many who have said they are glad she is dead, that the world is better off without her. On the rare occasion, I saw evidence that she was much more than her persona. Still, I do not know what was real, as I knew her media presence, not the woman. That doesn’t mean, however, that I didn’t know anything about her.

I do know many things about Joan Rivers. She was a stand-up comedian before there was a comedy club on every corner. More than that, she was a FEMALE stand-up comedian. She was successful in a career where most failed and where she was nearly the only woman. Her success blazed trails for countless women that followed. Not only did she open doors for women and help people accept women as serious comedians, but many female comics cite Joan Rivers as a hero. Male and female comics acknowledge her as the reason taboo topics are now acceptable comedy fare. We are no longer afraid to talk openly about subjects we used to sweep under the rug. Comedian Amy Poehler went so far as to say that “EVERY woman is indebted to her”. Ms. Rivers was a television personality at a time when television portrayed women as good little wives who spent their days cleaning the house while wearing fussy dresses with full petticoats. She built her career despite the obstacles of gender and for comedians in general. Just when she seemed to have it all, her personal life completely fell apart in a way most people will never face. Her husband Edgar Rosenberg committed suicide, leaving her devastated emotionally and financially. Even then, she pulled herself together and started over. She found a way back by reinventing herself as a red carpet emcee, and worked her ass off despite the naysayers who said she was a has been. Her career bloomed once again because she worked at it every single day. She continued doing just that almost until the very day she died, leaving a decades-long legacy of outrageous comedy, newfound opportunity for comics, and inspiration for everyone who cared enough to recognize her dedication despite any adversity the world threw at her.

Respect and gratitude, Joan Rivers

Ass of u & me

I hadn’t yet started this blog when Robin Williams died. I felt like I had last a close personal friend; it hit me hard. It’s difficult not to think of celebrities as friends, and that is magnified when you have a chronic illness because of all the extra couch time and hospital bed time. It is nearly impossible to avoid becoming intimate with the television and those that inhabit it. We see the same people over and over again for years, even decades on end; we share highly emotional experiences with them; we even get information about their personal lives and opinions…or so it seems.

The truth is that anything – ANYthing – we see or read about a celebrity is most likely MEANT to be in the media. Oh sure, every once in a while some piece of info, or maybe even most of the info about a given individual, is actually true. The problem is that the audience has absolutely no way of knowing what is actually the person and what is the persona. Does that sports figure actually think Nike makes the best sports gear, or was Nike just the highest bidder? Do those rappers really hate each other or is it all a big PR grab, complete with staged fights? Is that millionaire truly a great philanthropist, or was that donation prompted mostly by the tax write off and the good publicity? Does that actress truly believe the political opinion she supports, or is it that someone has to take the unpopular stance because it makes for good TV?

Very few people will ever know for sure, yet the majority assume they know a celebrity intimately because of what they have seen and heard. Often, what they heard wasn’t even directly from the celeb’s lips, but rather was a summary or some sound byte taken out of context. The accuracy rate of media summaries overall are faaar closer to 001% than 100%. Having an article written based on an interview you did is positively maddening! I did a couple of interviews for local papers for this and that over the years, and every single time made me understand why the offices of media outlets have a strict “no weapons” policy that is enforced with a metal detector, video cameras, AND a security guard. I have never owned a gun in my life, but reading my words after they had been twisted and turned and misquoted gave me an almost irresistible urge to immediately go flying down to the closest gun store I could find.

What’s worse, even if people read the article, they are likely to recall the details incorrectly. It is the same phenomenon that causes 6 different witnesses to a crime to give half a dozen different accounts of what happened. People do not always pay close attention to what they see or read, then when they try to recall the details, they don’t remember, misremember, or just plain screw it up. During a discussion on current events when I was in college, a classmate of mine swore that she had just read an article that said 90% of all French people were on Prozac. Um. Aha. Ok, so the stereotype does claim that French people are dark and brooding, and stereotypes usually have some kernel of truth in them, but, well! If nothing else, there are far more antidepressants in the world than just Prozac. Why on earth would the French so overwhelmingly prefer Prozac??? Had I not unearthed the truth about this particular – um, ok, I’ll be nice here, but this was not truly a “misremembrance”; it was what my 11-year-old daughter would call a “humongous BEEP up” – misremembrance, I am sure the mystery of it would have haunted me to this day. As it turns out, I didn’t have to try very hard to solve the case. A professor that I just happened to visit a couple of days later had taped the article to the wall outside his door. It said, and I quote because the words are now emblazoned upon my memory (taking up space that I am sure I could have used for something of importance to my life), “while there are many who take Prozac, 90% of French people say they are happy.” In an instance that can only be described as Black Rhinoceros rare, I just have no words. So instead, I offer the popular cop out of simply indicating my actions {stares blankly into space with a thoroughly befuddled yet completely annoyed look}.

I’ve gone down the street, around the corner, 2 blocks south to duck into Starbucks, then come back via the scenic route to say that this falsely perceived intimacy with celebrities can be heartwarming, as it was for the most part with Robin Williams. There was a global outpouring of sadness and support for his family. Then, there were those who proved that the insult “butthead” is given to someone who must be wearing their behind for a head because their brains were located in their lower regions and they definitely used their anuses to talk, because every last word they uttered was pure, ahem, excrement. They lambasted him and his family because he was a “coward” who took the “easy way out”, among other idiotic assertions. Then a couple of days later, it came out that he suffered from Parkinson’s disease, a chronic illness, on top of struggling with depression and addiction issues, making his suicide even more understandable. Regrettable, tragic, almost unspeakable, but understandable.

My verbosity abounds, so I stop here for the night

To Be Continued

The ID and the Superegos

Any lupie will tell you that one of the most complicated issues of being chronically ill is obtaining pain meds. First you have to make your way past suspicions that you are drug seeking before you can even discuss your real pain level with your doc, and even then, most of us underestimate that level. The DEA is putting ever more pressure on docs and states are passing new laws every day that complicate matters even further. Many docs have altogether stopped writing most pain scrips, instead referring patients to a pain management doctor. If the patient is lucky. Unfortunately, some docs won’t even give the referral, leaving the patient to limp by on whatever meds the doc is willing to write, if any at all. Many people would react “so what?” to that situation, citing the large number of docs available, with the point being the patient can just move on to the next doc. It isn’t so easy, though. A lot of patients live in areas where they have to drive for an hour or more to get to the doc they have, much less a new choice. Then there is the problem of looking like you are “doc shopping”; that is, shopping around to see if you can find a doc, or even several docs, who are willing to write pain scrips for you.

Having several different docs write pain scrips for you simultaneously is dangerous and illegal – just ask Rush Limbaugh (not that he got more than a slap on the wrist for it.) Shopping around for one doc willing to write one pain scrip on an ongoing basis for ongoing pain is not illegal or even wrong in any way. Still, if docs get a sense that you are looking because you want pain scrips, it is altogether too easy for someone to get the idea that you are drug seeking. That is a very fine line of distinction…needing pain pills vs. drug seeking. One is a legitimate medical concern for real pain; the other is someone looking to get high. There have been so many people looking to get high that people who need actual pain relief are more often than not left in the lurch, suffering with a 6-7 on a 1-10 point pain scale with little to no medication to help.

The market has come to pay far more attention to the drug seeker than the pain patient. Since few docs are writing pain scrips for that very reason, pain patients wind up in overcrowded, impossibly busy waiting rooms in “pain clinics”. Pain clinics are manned by doctors specializing in Pain Management; however, the irony is that even many Pain Management docs don’t write pain scrips. They do injections and various procedures meant to relieve back and joint pain, for the most part. The problem that causes for lupies is that much of our pain is more muscle aches or abdominal pain, which isn’t relieved by such procedures. We still need the pain killers. Convincing doctors of that is often a monumental task, and even once we have convinced a caring doc who is willing to write a narcotic scrip, we still have to overcome the pharmacy.

You would think the pharmacy would take the scrip and fill it so long as it seems legitimate, and if it doesn’t, they would make a call to the doc, verify it, and fill it. Not so. At least one national chain made headlines last year for holding perfectly legitimate scrips for as much as five business days before filling it because they were authenticating it. Keep in mind that neither docs nor insurance companies allow a patient to fill a scrip much more than 1 or 2 days before it runs out, so most patients do not have 5 business days worth of pain pills to take while they wait for the pharmacy to get around to doing its job. What’s worse, the pharmacy didn’t tell the patient how long it would take until they already had the prescription in hand, and they refused to return it for the patient to take it elsewhere. Unbelievable, right? They shouldn’t be allowed to operate like that! But they did, and at worst, they lost a few customers. Few others noticed. Instead, most state laws passed even more laws about how carefully narcotic medicines had to be handled, scaring pharmacies into even more draconian behavior.

Many of those laws have tightened controls on ID’s for not only the people picking up the prescription, but also for the patient named on the scrip. I messed around and let my ID expire, which was making picking up my prescriptions ever more complicated. I’ve been in the hospital more than out the last year, which led to several situations where I was supposed to go get my ID renewed but I landed in the hospital before it happened. So my ID was far past current. Finally I made it to the Department of Public Safety this morning, a stack of ID documents in hand, but not my last ID (which was from a different state), because it was lost somewhere along the way, at a hospital I think. So it was complicated, but I was just certain I had all the documents I needed. All was well until she asked for my social security number.

I have to make an admission at this point. I despise getting ID cards of any kind. First, there is the whole picture issue. Why is it every ID picture either looks like Minnie Pearl making a sourpuss face or Ruth Buzzi with a bad case of constipation? (If you have no clue who those women are, you are too young for my comfort; go find a teething biscuit or something.) Let’s say you manage to photograph well after dealing with the DMV all morning. You still had the DMV ordeal, which includes the, um…people, I guess you could say, who always seem to fill the DMV waiting room. Do ordinary, sane people ever get driver’s licenses? You sit with the wal-martians for an hour or two (ok, so at least it is free entertainment while you wait), then you get to deal with the authority figure behind the counter. Or, should I say, the authoritarian behind the counter. That person who was drawn to this profession because they get to spend their day saying “NO”. No, this isn’t the right form; No, this document isn’t good enough; No, you can’t get this magic little card with your own name and picture on it. NO. There is a gleam in the eye that goes with that NO. I am convinced that each person behind that counter has a little counter that they click each time they say NO, and the person with the highest count at the end of the day gets a cupcake.

Despising getting an ID card isn’t much of an admission? You’re right. My real admission is that because I despise it, I avoid it any chance I get. I avoided getting a new ID when I moved to a new state, and I avoided changing my name on my social security card when I got married…almost 12 years ago. Yes, I did try more than once, but I kept running into reasons for the person behind the counter to say NO, leading me to find a way around dealing with it, and eventually leading me to 12 years of avoiding getting it updated. I know, I know, shame on me. However, we are still talking about MY name and MY identity. Yes, I should have to jump through a few hoops to make up for putting it off, and yes, I had an entire stack of identification documents to make up for my transgression. The problem was that this was like the Holy Grail of Being Able to Say NO. There wasn’t just a gleam in this agent’s eye, there was a starburst that threatened to blind her as she told me that I could not get a state ID unless the name attached to my social security number in the database matched the name on my ID, even though the name on my social security card is clearly indicated and proven through a chain of documents to be one of my past names.

Ok, fine. So I will go sit at the social security administration with my fistful of identification documents proving that I really am me and that the name on my social security card was my name and changed when I got married. I can prove every single name change, but that isn’t good enough, as this new bureaucrat was more than excited to inform me. NO. No, no, no. Birth certificate, marriage certificate, official divorce decree, new marriage certificate, current insurance ID with current married name. The websites, PDFs, and brochures all swear that these documents are more than enough to obtain a state ID so long as you know your social security number, which I did, but it wasn’t true. Your social security database entry also had to match your current name. All of those same sources for the social security administration swore those documents were more than enough to change your name on your social security card…but NO, with a gleam in the eye. Despite all of that, if the marriage was more than two years ago, you must ALSO HAVE A STATE ID, which you can’t get until you change the social security account, which you can’t do until you get a state ID…

This is how I spent my Friday. I finally got someone to admit that if I go back to social security next week (and wait in line again, thank you very much), I can get a letter stating that I am unable to change my name on it until I can get my state ID, then I can take that letter to the DMV (the social security bureaucrat quite pointedly mentioned I might try a different DMV office, as different agents often gave different answers…oh, but I will have to wait in line again there, too.) At that point, all I will be able to do is offer up this new documentation at the Altar of the One Window that Isn’t Closed, bow in supplication, and pray to the Red Tape Gods that someone will break down and admit that I am me.

Lupus has its say

It seems like I was off to a good start. I felt almost normal yesterday. Then I woke this morning already halfway to the bathroom in a mad dash to make it there before I threw up. The rest of my day has been just as entertaining.

It is strange when you have those good days. It messes with your head, especially if you have a few good days in a row. You start thinking about all those people, all those doctors, who told you that at least a large portion of the problems you are having are all in your head, psychosomatic or hypochondria. You take a mental inventory of your body and come up with very little in the way of something wrong, and you start to think maybe it really was more inn your head than you thought.

You get a good day but instead of being able to enjoy feeling halfway human for once, you spend the day contemplating how intact your sanity really is.

Then a day like today comes along and reminds you of all those little aches and pains and symptoms that have become your old friends. It is comforting in a way; familiar. You don’t have to worry about your sanity. In fact, you can’t. There isn’t time. You are too busy running to the bathroom, figuring out which pills to take, and checking your vitals. Oh, and wondering whether or not to go to the ER.

Forget calling your doc. Their answer is always “if you feel you need it, go into the ER”. Helpful. The urgent care clinic isn’t an answer either. You go, pay the copay, wait two hours, finally see the doc, who takes one look at your history and tells you that your case is too complicated to be handled in the clinic. You need to go to the ER.

So fine. If you feel you are sick enough, you go to the ER, but you wait until it is as critical as you can stand before you go, because if you don’t, the ER staff look at you like you are the hypochondriac you feared yesterday that you might be. They find out you have lupus and start saying things like “it’s probably just a flare”. JUST a flare. Then they start getting snotty about pain meds, even if you haven’t asked for them. The ER is a terrible place for someone with chronic illness, but we often get sick enough that we need evaluation and stabilization, and the ER is the only place for that to happen. So we stay at home, knowing we should go in but avoiding it until there really is no choice, then we traipse in to get berated about why we are there and why didn’t we just follow up with our regular doc. It is often all the way to humiliating.

Then other times, we get scolded for not coming in earlier, because our vitals are so far gone that we almost waited too late. I sit here at the moment with a blood pressure of 78/54. It hasn’t been much higher than that all day. I just passed out three days ago, woke up with my head somehow inserted into a shelf in front of the toilet. I probably fractured the bridge of my nose. I didn’t have any other symptoms, though, so I just stayed home and monitored my vitals. My blood pressure was a bit low that day, but slowly came up, and nothing else was going on. Then the next two days, I felt pretty good. Then today happened. Gastro issues, abdominal pain, barely able to lift my head off the pillow, and low blood pressure. Still, I haven’t decided that it is bad enough to subject myself to the ER. It just isn’t worth it to me yet. I have to pass out again or have an even lower blood pressure drop or some other catastrophic event to be willing to put myself through the ER ringer. I’ve been to the ER many times when I was immediately admitted to the hospital, and I’ve been many times when I was treated and released, but I have to say that I don’t think I’ve been one time that I didn’t need to go, right then. Without the ER, I would have to wait at least until the next morning to see a doc, perhaps all weekend, and it is rare that the doc will see you that same day.

The ER is a necessary evil. You have to submit to needles, walking down the hall carrying a little jar of pee, wearing a backless gown, lots of little humiliations; but, when you are an ER frequent flyer, you also risk getting lectured about drug seeking and being treated like a hypochondriac, even when you are there with a legitimate emergency. Not every doc does this, but enough that nearly every person with chronic illness debates a trip to the ER.

I’m pretty sure one of the circles of hell is nothing but ER’s.

In The Beginning…

It seems to make sense to begin at the beginning, but that was so very long ago that if I started there, I wouldn’t be able to talk about today until sometime in the next decade. I just don’t think anyone is going to be excited about hearing endless stories that happened in the avocado green/harvest yellow, shag-carpeted 70’s. Of course, there was that short period in ’76 where everything was plastered with red, white, and blue. I suppose that broke things up and brought a little excitement to life. The thing that amazes me is that we actually had a fashion swing that gave us even bigger pants legs than bell bottoms. Even Nostradamus on his best day couldn’t have seen that one coming.

Lupus, for me, probably started in vitro. I was most likely born with it, which takes us all the way back to Incense and Peppermints, but other than a clear memory of watching Neil Armstrong set foot on the moon, I don’t remember much until the 70’s. My family doctor suspected in 1987 that I had Lupus, but I didn’t get actual confirmation until 2013. This doc knew what he was talking about – he was a true family doctor. He delivered me and half my cousins, then my first born. By the time my son was born in 1991, he had stopped delivering so that he could sleep through the night, but he was still my son’s pediatrician from his very first day in this world. This doctor knew me and my history better than any other doctor ever has or ever will. Based on all my illnesses and weird presentations and general medical problems, he thought it was lupus when I was 22. The problem, he told me, was that there was no test to prove or disprove it. We simply had to watch for a few years and make the diagnosis based on what happens. Great. A few YEARS, no test, no actual proof. Unfortunately, I didn’t have any clue what lupus was, and we didn’t have Google in those days, so I really didn’t pay too much attention. I moved out of state a couple of years later, so the diagnosis never got confirmed.

I spent the next couple of decades getting sick way more often than I should, having inexplicable symptoms for no apparent reason, and winding up with all sorts of diagnoses, including psychosomatic, drug seeking, attention seeking, hypochondria, and even Munchhausen’s, which means I was somehow purposely infecting myself for fun and attention. Woohoo. These diagnoses came when the doctor had done everything possible to figure out what was going on with me, but couldn’t find an answer. At that point, the doctor decides, and explains to me, that with all the years of education and all the tests and information at his (or her) disposal, he SHOULD have been able to find a diagnosis, and since he couldn’t, then the only answer was that I was somehow, consciously or subconsciously, making it up. Doctors do have an awful lot of education, they do solve a lot of medical puzzles, and they do use their knowledge and expertise to save a lot of lives. However, all of that in no way means they know everything. Somehow, they forget that sometimes.

Case in point: When I was 31, I became extraordinarily ill while in Key West during Christmas break from grad school. My mom lived just south of Tampa, and my boyfriend and I had driven down from Michigan. After Christmas, we drove a few more hours to Key West and spent a couple of days there. Our last day, I was listless but did my best to enjoy the vacation. We were supposed to leave the next morning. I woke up at 3am with a temp of 105. Oofahmabobble. Boy, did that make the trip home an adventure! We were in a VW Bus with almost no insulation left, and once we got north of Florida, the entire country was frozen solid. The Bus even had a carbon monoxide leak, which really livened things up, but that is a story for another time. I visited an urgent care, got a couple of meds to help me limp through the trip, spent an extra day at my mom’s to be sure my temp came down to a respectable 101, and headed north. It was definitely a bumpy ride, but we made it.

I went to my doc the very next day. He ran a bunch of tests, switched my meds, but found nothing and I didn’t get better. The next week came, and I still had fever with body aches and debilitating fatigue, but those were the only symptoms I had developed throughout the course of the illness. Nothing else, which gave the doc nothing else to go on. Still, he ran another battery of tests and tried a different set of meds. No dice. The third week, the fourth week, the fifth week. Fever with aches and extreme, can’t lift your head off the pillow fatigue but nothing else. For five weeks, my temp had not dropped below 100, not even for a minute, not even with meds. And he had no answers. Every test possible was negative, no other symptoms, no meds had worked, nothing. So he sat me down and told me it was psychosomatic. It had to be, because he had brought all of his vast knowledge and experience to bear on my case yet hadn’t been able to find a thing. Therefore, it had to be in my head; the fever, the aches, the fatigue that was so that I had to drop one of my grad school classes and barely made it through the other two. All in my head. I went home and cried for three hours because I was obviously crazy.

My boyfriend didn’t give up so easily, thank the heavens. He made me go to a different doctor the very next morning. The first thing the new doctor did was look at my records from the last doc, then he ran a test that had been missed. He tested me for mono.

That’s right…the “I’ve done everything known to medical science so you must be imagining it” genius had not, in five long weeks, tested me for mono. It had never occurred to him, because the average mono patient is under 25 and has a sore throat. It is rare to have mono when you are over 30, and almost unheard of to have it without a sore throat. Yet, there I was, 31, no sore throat, and not only positive for mono, but the doc said it was the largest viral load of it he had seen in three decades of practice.

Dr. Psychosomatic taught me an important lesson, though, and I’ve needed it many, many times in my fight against Lupus. Doctors do not know everything, despite what they tell you.