CRPS/RSD

Among the first words that Faust sings out are these:


Le ciel pâlit; devant l'aube nouvelle
La sombre nuit s'évanouit!
encore un jour, encore un jour qui luit!
Ô mort! quand viendras - tu
m'abriter sous ton aile?





Eh, bien! puisque la mort me fuit,
Pourquoi n'irais-je pas vers elle?
Salut! ô mon dernier matin!
Salut! ô mon dernier matin!





J'arrive sans terreur
au terme du voyage;
Et je suis, avec ce breuvage
Le seul maître de mon destin!





What is he moaning and kvetching about, and in such high gallic italic manner? He's being a big baby, signaling his intent for this day to be his last, his poison at hand. Faust is one of those people -- any little thing goes wrong and suicidal ideation is the name of the game. I closed out this little bit of select verbiage with his claim to be the "the (only) master of [his] destiny."





Were that the case, dear Faust, your previous attempts at dying would have succeeded, hmmm?





I tell you, friend, beware of those to whom the exclamation point comes easily, for they are likely victims of emotional lability, a little touch of insanity, their personality... borderline.





But Faust does not want to die. He wishes, mostly, to avoid pain, to be young again. The guy just wants to have fun.





And my darling Bianca fairly screams for Marguerite, always the same couplet, always rather awfully: "Ah! je ris de me voir si belle dans ce miroir!" A dependable narcissistic creature -- Bianca more than Marguerite!





I am somehow acutely ill on top of all my chronic mess, and this involves a seemingly unending fever.





The first symptom of my fevers is utter despair, and tears. Not so distant, really, from the pitiable plea for death I opened with, this stormy post-Independence Day: <<Ô mort! quand viendras - tu m'abriter sous ton aile? Eh, bien! puisque la mort me fuit, Pourquoi n'irais-je pas vers elle?>> You must remember that I do not share the Faust of Goethe! You must keep well in mind that this is the bubblegum of Gounod, source of Marguerite's bejeweled fantasy, keeper of my beloved Bianca's obsidian obsession, all sharp and shiny.





I feel *so* alliterative this afternoon.





I just happened to have a doctor's appointment this week, as I was getting more and more lost in pain and fever. Normally, I would have hunkered down at home, armed with appropriate medicines, and given myself over to Wimbledon coverage, old UFC matches (may God bless Forrest Griffin tonight!), and game upon game of Mahjong and Bridge.





The pain of washing, dressing, riding in the car (dear Fred at the wheel, Bianca struggling to chew through her red bandana gag), and even sitting in the waiting room -- I balanced all of that pain with the potential help my talented internist might provide. He's a great doctor.





No, be honest.





I needed a healthy dose of sympathy.





It turned out my thermometer was defective; My temperature was a good degree higher than it registered at home. It turned out my heart was racing along at too much of a clip, averaging 128 beats a minute, synchopated time. It turned out that I had little coping ability left.





When I first made mention in this rather sorry blog of The Acronyms that shorten so much of my life, I felt jocular, cute, a regular tease. No more.





The pain that I am in on a daily basis would make most of you desperate within an hour. Try to imagine such a pain not ending. The claim of such unending and severe pain earns many a rolled eye among the medical types with whom someone with CRPS/RSD has to deal. Odd, that the medicos tend to think that it is they who are "putting up with nonsense," when, in actuality, it is usually the other way around.





As I am hurting a lot this very moment, as my fever is taking its afternoon hike, I will whine on. As I noted initially, whose blog is it, anyway? My good doctor found that I am in a lupus flare -- and oh, how I wish the designation "flare" could be washed clean of the disrepute it currently bears -- and this lovely exascerbation has caused a worsening of the avascular necrosis present in all of my major joints (and some of the myriad minor). Worse, it has kicked the pain of CRPS/RSD up a notch or hundred.



I keep threatening you with that acronym, don't I? Much as my beloved Bianca sings the sad song one more time.



Complex Regional Pain Syndrome, Types 1 and 2, is the updated designation for the former Reflex Sympathetic Dystrophy and Causalgia. All of my limbs are involved, as is my face (the newest bit of fun). My right side is much worse than the left, although my left lower leg is trying for equality at an alarming rate.



Mine is a mixture of Types 1 *and* 2, in that I have demonstrable nerve damage/lesions in my right leg, left hand, and right arm. My left leg shows no such damage -- it seems to be going along just for the fun of it. My face has not been subjected yet to testing -- my nutty neurologist does not seem to want to subject me to facial shocks and needling, for which I am grateful.



There are some mental aberrations going on inside this head, too. Pure emotional garbage. As in my periodic insistance that we test and retest in order to find what we already know. It just comes over me, about once a year, this idea that maybe if we retest, maybe if we repeat that triphasic bone scan, it won't show as much involvement as it did the first time.



I also have been bothered by the distinctions between CRPS Type One and CRPS Type Two. All the research seems to have bearing only on the former RSD, now Type One. You know, all those people out there, suffering, yes, but suffering without demonstrable proof.



I am very ashamed of this example of my own discrimination.



You see, I am a fan of the many medical blogs, an interest that, until the last few weeks, was confined to the work of a few doctors and nurses whose incredible literary gifts allowed me insight into the frustrations and joys of their world, into which I have so often been an unwilling interloper. Plus, they are often a regular hoot.



Then I stumbled onto a scene reminiscent of a feeding frenzy of sharks drawn by chum.



Let me say, straight away, that I get it, that I understand the immense frustration of dealing with inveterate drug-seekers and general abusers of the system (the emergency room, in particular). I also get both the need, and the right, to *vent* this immense frustration.



Still, I was ill-prepared (That might be an intentional pun, I don't know, those moments are so fleeting with me.). I was ill-prepared for the venom, the hatred, the ridicule of people claiming pain, claiming fibromyalgia or some other auto-immune disorder that has yet to have diagnostic criteria.



Believe me, I don't have sympathy for the person lounging on a guerney, demanding a sammich or yakking on a cell phone, then claiming a 15 on the accursed 1-10 pain scale. Nor do I feel much for the woman who comes in the wee hours of the morning complaining of a wicked fibromyalgia flare-up, wanting/needing medication but amazingly allergic to the most appropriate non-narcotic ones. Neither one is making acceptable use of emergency facilities.



And really, I don't expect sympathy at all from emergency room personnel. Compassion, maybe, though at this precise moment I cannot find the words to define the difference. Anyone?



Back to me and my trek to the doctor this past week. Whose blog is it anyway, right? Right!



It would not have been inappropriate, I was told, to have gone to the Emergency Room over the previous weekend, when the pain had become so bad as to occasionally keep me from being able to stand, and when the fever first truly spiked.



Really?



What would the medical professionals have muttered under their breath?



I have had the misfortune to end up in ICU, on a ventilator, four times in the past three years. After the initial experience, it was absolutely a necessity that I be unconscious before being plopped down in any ER, any hospital.



I have many war stories that would shock, but for now? Just one story, and one that it will probably take another person with CRPS/RSD to understand: Still on the ventilator, but conscious, alert, oriented, the Nurse-From-Hell delights in informing me that CRPS/RSD does not exist, that I had spent the previous 6 years misdiagnosed. Her findings? I had massive cellulitis (in my purple, ice cold feet) and was lying about the extreme sensitivity and degree of pain. "I seen this before, up in Henry County. Yep, cellulitis, that's what this is."


My beloved Fred, following the whispered instructions of my beloved Bianca, had met with the hospitalist and the charge nurses, making sure that they all knew to take extra care not to manhandle my extremities, also letting them know that my "normal" should not make them freak out and order a slew of testing for clots or surgery for necrotizing fasciitis! Yes, my legs might be purple and ice-cold, the source of intense pain just by the weight of a sheet, but that was par for the course. Bianca directed him to make polite signs which he then posted on the bed and on the door to my little ICU cubicle.



Ah, but... "I seen this before, up in Henry County... cellulitis... and it don't hurt that bad."



She had a little game.



Remember that I cannot talk, all I can do is hope my eyes are bugging out enough for her to take pity.



She takes her hand, points with the index finger to a particularly swollen and purple section of my right foot. She laughs and brings it s-l-o-w-l-y toward my skin. She laughs some more, she wants to know if it hurts yet, she taunts, asks whether I want a "little mor-pheene" to ease the pain of her upcoming finger poke. The tension and fear have built up in my head to the point of desperation, and I do what she, no doubt, wants me to do -- I lose it. I flail, I kick, I scream -- the alarms go off -- cardiac, O2 sats, the vent. Other nurses and respiratory technicians stream in.



They see a patient gone berserk. The Nurse-From-Hell winks at me. She is my nurse twelve hours of the day for the next 3 days. I am extubated but cannot bring myself to make a complaint. Who am I compared to her?



So as my good doctor gently chastises me for awaiting my long-ago scheduled appointment with him instead of seeking to be seen on an emergent basis, I know inside that I will never willingly see a nurse or doctor who doesn't have some proficiency with CRPS/RSD, AVN, SLE, and all the other partridges in my pear tree.



Faust gives lip service to suicide. I don't do that.



I'm on a very high dose of steroids -- All Hail Prednisone. This on top of the cortef to treat my profound adrenal insufficiency. I think there may be a post or two on stress-dose corticosteroids but, believe me, I will try to refrain.

The pain? I would fix it at an 8. I never claim a 10 because it seems, by definition, impossible. Plus, I want to keep my options open.



Where is my damn sammich?



Ah! je ris de me voir si belle dans ce miroir!

*The photo is of my right foot, in spasm -- and in one of my sexier shades...