Mostly, these problems are neurological. I find the brain and its doings fascinating, usually, but not so terribly much when the brain in question is stashed in my own skull.
I think I've written before about the "Where is my leg?" phenomenon, wherein locating one's own appendages in space becomes either problematic or hilarious, depending.
My upper body has joined in the fun, my hands being downright wicked.
I caught Fred watching me last night as I was dressing down these things called legs. In transit from the bathroom to the bed, a voyage usually marked by pirouettes and grands jetés, I lost control of my legs -- in the sense that they decided my directions were flawed. All I was asking for was a basic straight line of approximately seven steps, with the assistance of a cane . Ironically, there is one major obstacle in my carefully delineated path, and that is my wheelchair.
It won't fit through the bathroom door, and so is parked alongside the bed, where I try to keep it connected to the charger. You never know when someone's gonna call out, "Road trip!" -- and I wanna be ready.
In addition to the chair itself, then, I have the thick wires of the battery charger that snake across my path.
Lastly, there is one red plastic water bowl, Dobby's Beloved. I keep it neatly tucked in the corner behind the bathroom door. Alas, that is not where Dobby likes to keep it. He nudges and moves it with the encouragement of his nose and a front paw. (Yes, he still talks to it, even sings in an odd chirpy dirge, followed by head bows and head butts -- and water everywhere, of course! Silly humans, we love to watch and eavesdrop, and I don't think we would be totally shocked were the bowl to talk back one day.)
He seems to prefer it precisely in the middle of the path between door and wheelchair, approximately one-third of the distance between the bathroom door and the beckoning bed.
There's no need to weave a fun, cute story out of this Journey of Seven Steps. With my brain set on dementia, apparently, I could not provide my legs with directions that they thought worth following.
The first thing my right leg decided to do, when realization of its freedom set in, was to kick Dobby's beloved red water bowl -- freshly filled with cold, filtered water, of course. This is an old picture of my right foot -- from about three years ago. It's much worse now, after deep ulcers, repeated nail loss, and the general deleterious effects of CRPS. You can see the beginnings, at the top of the foot, below the toes, of typical CRPS lesions. At the moment, the right foot's coloring is a deeper purple, certain areas evocative of, say, *black*, whereas the left is chilling and holding at a kind of grey-blue.
|CRPS in right foot, approx 2007. (I don't recall the reason for the tape) |
Since then, the foot has ulcered, fractured, and lost nails.
Here is an even earlier photo that shows both feet -- It would be wonderful to return to that state! It looks so much less painful than what I am now experiencing. The left leg, at present, rivals the right in terms of pain, but the right will always be worse, I suppose, both in appearance and sensation, as it was the site of the initial "noxious" injury in May 2002. Somehow, miraculously, the left foot has also escaped most of the little traumas over these past eight years -- no cuts, scrapes, ulcers, bruises. (I did lose the big toenail for some reason) It is only in the last month that the left leg has joined the right side in the torture of spasms-'n-jerks hi jinks.
|This was very early on, maybe 2003/4. The level of discoloration extended just above the ankles. Now it extends above the knee on the right side, and just below the knee on the left.|
|These were my "winter" CRPS feet -- thin, very purple, ice cold, incredibly painful. In the summer, there was more edema, a redder cast, and they were sometimes radiating heat. Again, much different, much worse, now.|
Both feet have been fractured multiple, multiple, MANY times... to the point where we barely react anymore. We certainly no longer report the fractures as needing immediate care, because the advice is usually inappropriate for the disease. You do NOT want to immobilize a CRPS limb. You do NOT want to apply ice to a CRPS limb. And you really don't need to rush off to get an x-ray after the fifth or sixth break... It's been documented to death. Another confirmation by x-ray and a wasted bone scan just lines someone else's pockets with green. Generally, I will tell my internist or ortho at a regular appointment, note their sage advice, and then continue doing what I know is best.
I remember the first bad fractures to the metatarsals of the right foot. It was my introduction to an orthopedic surgeon who specialized in feet. He seemed to be expecting quite a tale to explain the broken metatarsals, the incredible edema, and the astonishing array of colors. He was pretty disappointed by my claim that I took a step outside, on concrete, and they just broke. I had not been diagnosed at that time. He knew, of course, immediately that this was CRPS, and advanced enough already that I had broken bones by simply stepping onto concrete. Did he tell me, or even suggest to me that something more ominous than weak bone in a previously badly broken ankle, was going on? No. He asked me if I would mind him writing a letter to the orthopedic surgeon who had repaired the ankle (my shoulder doc, the asshole Eric Carson, major player, major cause, of my "sentinel event.") Anyway, the foot guy knows me well now, and nothing much surprises him anymore.
We did once furiously clash -- furiously, awfully, saying things that hurt. This time, I had my diagnosis, and I was consumed with anger at every doctor who had contributed either actively, or -- almost worse -- by maintaining a complicit silence, to my loss of quality of life.
It was hellaciously hot, and I was being sent to him on an emergency basis, as my right leg had very suddenly worsened. It was huge and red and throbbed in cadence with the miles of backed up, churning, honking traffic -- the trip, first to my internist, then across two counties to this OS, was marked by an extremely bad attitude, considerable cursing, and a partner that was ready to kill the next hindrance to appear.
The week prior, I had sent a letter to the billing department of this huge orthopedic practice. They were blatantly double-billing, determined to get the payment they felt they deserved, no matter the opinion of my insurance company. Balance billing was the usual method, though sometimes they liked to dick around (à la the Happy Hospitalist!) with coding. The PA once treated me to a 15-second injection of cortisone that ended up costing my insurance company over $600 -- coded as surgery, etcetera. They tried several times to charge for splints that I actually had to buy elsewhere (Oh, *that* is quite the racket... they refer you to what amounts to a specialty boutique for splints/braces, saying they will make custom devices and carefully fit them and blah blah blah. Upon arrival, the fee is immediately addressed, and when paid, you are escorted to a room in the back. The, uh, specialist comes in, looks at the involved body part, hums a show tune, and grabs a box from the pile of boxes on the shelves. He handed it to me, said, "This oughta do it..." -- signed the fee sheet -- and advised me that "the girls" would check me out, and to be sure to have a good day. My insurance paid, without question, $200 for the brace -- almost identical to what you'd find in a drugstore --and over $200 for the "evaluation" and "fitting.").
So I wrote a letter. I used to do a lot of that. Now, I don't bother, as it makes no difference.
The congenial billing department wanted the medical crowd to know what an insufferable ingrate I was, especially considering that I had, at that time, great insurance, so they had appended my letter to the front of my chart.
It really was hellaciously hot that day. I was kind of scared by my internist's reaction to the state of my leg, and I was acutely aware -- newly so, but still acutely -- that no one honestly knew how to deal with CRPS. It might have been 3 or 4 months since my then new neurologist had made the diagnosis, to the consternation of the hospital and the involved orthopedists.
He lit into me like nobodies business, this doctor. Yes, he knew it hurt, and badly. That was what CRPS was about, didn't I understand that? Didn't I know yet that that was my life now? What did I expect him to do? Loud and jeering, he seemed to yell, but probably did not. Over and over he spoke of the worst pain there is, and explained, angrily, why -- because it never stops, it never relents, it never gets better. I, the patient, had to change. I had to adjust. I was crying and without the benefit of a tissue or handkerchief, I remember smearing snot all over my face, and then being angry and frustrated about THAT.
I yelled at the x-ray tech who kept grabbing my leg so as to get the right picture. I did not yet know the secret: if you tell a medical professional to NOT touch a body part, the first inclination will be to TOUCH that body part. Often this comes -- or so one of them decided to tell me -- from a desire to ease pain -- I suppose with some sort of bleeping Healing Touch ("energy medicine") in mind. Beware the practitioners of Healing Touch, unless you ascribe to its theories, as it is impossible for them to understand that sometimes even the gentle, lavender-scented, sun drenched waves of air created by their sanctimonious undulating hands can cause severe pain to someone with CRPS. Plus, they annoy me, and I say this despite the convictions of a dear, dear friend that the love in her hands can cure all...
That day? There was no love in the air! When he finally examined me, Foot Guy managed to pose a few questions and fairly leapt at one of my responses. My answer, he crowed, provided the diagnosis -- I had a blood clot, by golly. (No, I'll not embarrass him by telling you the question, though I will tease you: It involved a symptom that occurred when I took a deep breath.) Why, by George, by Golly, by Gee, it *was* an emergency after all.
He was ecstatic. We had all enjoyed about 20 minutes of air conditioning and declining levels of anger, resentment, and adrenalin. Plus, now he could save face by sending me for an emergency doppler/ultrasound at one of the area's many hospitals -- two of which were just blocks away.
Of course, he thought it best to send me back to the very heart of downtown, to the hospital across the street from his practice's main clinic. That made sense, especially since one of the nearby hospitals had multiple stored copies of several prior doppler studies. They might have been able to simplify things by comparing those previous studies with a new one!
Having successfully avoided the best quality of care, Fred and I set off, again, now in rush hour traffic. The highway was like a parking lot. Fred gets frustrated in this situation, and tends to stop and start with huge jerks, speeding the distance of a few car lengths, then jamming on the brakes. So, of course, I jammed my right leg against the floor mat in an imaginary effort to apply also-imagined brakes. We both heard the crunch that issued from my ankle, and I just cried. Just sat there and cried.
Anyway... we got the ultrasound: no blood clot. The only medical response was to suggest admission, though, again, there were no clear ideas about what that would entail. The sun long set, we went home and tried to decompress. The day was not a waste, in that I had learned -- been taught yet again -- that seeking help with a CRPS-related problem was most likely to be an exercise in futility and frustration. The next morning, I woke in heart failure.
Which I successfully treated with loads o'lasix, and hours of slug-like rest.
Foot Guy and I get along now. Of course, I only go to see him when a foot fracture is not improving. We are very polite to each other, and have never discussed the heated exchanges of that hot summer day. I have always wanted to know the content of the letter he wrote to Eric Carson, author of my CRPS. I mean, really, what did he say? "Ummm, Eric, old pal, are you aware that this woman has developed a whopping case of RSD?" Who knows?
Yes, right. I was telling you about the neurological pitfalls that plagued my journey from the bathroom back to bed last night. Gosh, I wonder why that didn't keep my prose heightened and dedicated solely to the telling of such a fascinating tale!
I got as far as Dobby's red plastic water bowl. Then came the wire from the wheelchair battery recharger, and the wheelchair itself. The short version? I had no directional control -- not for up, not for down, not for left, not for right. Every directional thought or command was met with the wrong action by my legs/feet. I managed to end up sitting in the wheelchair, cords wrapped around my right ankle, yelping from the pain of that contact.
I bent down to pick up the recharger and to free my foot. I could not get my hands to cooperate. I couldn't grip the cane handle.
This morning, I littered the kitchen with joyously tossed coffee grounds. Then I thought it would be fun to strew kibble in seemingly random -- but really quite artful -- arcs and other geometrical designs. Trying to arrange an appointment before the one scheduled for February, I inadvertently hung up on my neurologist's office when I dropped the phone.
My head is throbbing and my temp is over 101.
I have no idea where my legs are. Fred is in need of my curative chicken soup (Yes, he is sick again, poor fellow) but do I dare pick up a knife or deal with boiling water?
Thanks again for letting me vent. Yes, I know it's my blog. Still, this gets old and I am aware of that...
* PLEASE DON'T REPRODUCE MY PHOTOS. UNFORTUNATELY, A PHOTO OF MY HANDS IS BEING CIRCULATED AS AN EXAMPLE OF UPPER BODY CRPS. THERE ARE PLENTY OF PHOTOS AVAILABLE AND PROPERLY DOCUMENTED ON MEDICAL SITES DEDICATED TO CRPS/RSD.