I mentioned in a comment at the excellent blog Call A Code that there was a matter about which I would love to have an explanation. I began reading medical blogs about a year ago when I realized that I was not going to be able to escape frequent trips into the realm of the medical. Sometimes, I knew that I was bringing with me -- to my doctor's office, to the Emergency Department, to outpatient Radiology, to Labs -- that awful thing we call "baggage."
In the course of being treated for lupus, I developed avascular necrosis pretty much in every major joint and long bone, with the occasional minor joint tossed in for purposes of cosmic laughter. A life of joint replacements began... adrenal insufficiency... and so on... until there was finally a fall in an ICU that quickly resulted in the development of CRPS Type 2 -- nerve testing showed demonstrable damage to three major nerves in my right leg and the ulnar nerve in my left forearm. A fast glance confirmed the broken bones!
The CRPS 2 "spread" (a woefully inadequate and inaccurate verb) from my right leg to the left a year later. My right shoulder eventually demanded attention because I could no longer use that arm due to the pain of the collapsed joint. That shoulder had to be replaced, as the left had been three years earlier. CRPS 2 promptly set in on the right side. I was winning that war, I think, with daily visits to the gym (a Wellness Center) and rabid exercising and desensitization efforts at home.
Then I proceeded to take a swan dive, catching myself with... you guessed it: my right arm, shattering my elbow. Another major orthopedic surgery that left me near despair, and CRPS in full regalia in that arm.
Since January, I have been in what we thought was an unusually tenacious, ridiculously long SLE "flare" (another inaccurate and inadequate descriptor), with incredible levels of inflammation. I have been living on steroid tapers, on and off, off and on. Recent months, though, have also been marked by fevers well above "normal" low grade temperatures and a steadily rising white blood cell count. The most recent steroid taper seemed to help a great deal with most of my joint pain, with the exception of my right shoulder, which steadily hurt worse.
So back I have gone to the inimitable world of orthopedic surgeons, where I am blessed by the treatment of a superb surgeon who has the greatest of kick-ass nurses making sure that everything is done, and done well, with dispatch.
I have, in other words, been forced from the comfort of my internist and his office to the wider medical world of hospitals, clinic waiting areas, numerous X-ray suites, and exam and change rooms.
So what is my question for the mostly well-intentioned medical professionals that we encounter on our travels?
Because of my CRPS, I can be put into an orbit of pain if anyone, besides myself, touches my limbs. I won't insult you with a numerical citation from the pain scale -- by definition, my pain is never greater than 10, and I also like to leave 9 as an unrealized experience, so I will usually tell you "7 or 8." These grabs and touches, however, cause my pain level to shoot as high as I believe possible, and stay there from anywhere from a half-hour to a half-day. In addition, I will put on quite a color show, and run the gamut of temperatures from blue and ice-cold to lobster-red and quite hot. It ain't pretty but it makes for great after-dinner entertainment.
Whenever I have been hospitalized, Fearless Fred and La Belle Bianca have produced simple clear signs that were then placed on the door of my room, over the head of the bed, and at the foot of the bed. The hospitalizations of the past 3 years have all started in the ER and ended up in ICU, with a quick step-down to home afterward. Ventilators were involved...
What? You have a life? Why don't I just ask the question already?
Okay! Why, when a nurse, tech, or doctor has been informed of the ultra-sensitive extremities they are about to encounter, and when asked to refrain from touching, bumping, fondling said extremities -- Why is the first apparent impulse of these purportedly well-trained, presumptively compassionate individuals to touch, grab, move, "tuck in" said appendages?
Those compeled to "tuck in" are abominations. It bothers them to see my lower legs and arms disrupting the flat planes of their orderly bed linens. If I cannot tolerate the touch of your hand, how do you think the weight of sheets and blankets will feel? Why do you wait until I am asleep? Do you actually think that I won't be jerked back into consciousness, the ventilator alarming as crazily as my various nerve endings?
I can feel hysteria rising, and some bile, too. So I will calm myself and just tell you of the most recent example.
Friday, I had fluid aspirated from my right shoulder under fluoroscopy. The first problem came with the proffered gown (I guess that is a common problem!). It was a wrap-around design and both the material and the sleeves were aggravating the CRPS. I asked if I could not just cover myself with a sheet instead, especially since the gown was going to be half off during the procedure anyway. I quickly explained to the five other people in the small procedure room what CRPS was (insofar as anyone knows) and how I would very much appreciate not being touched without warning or permission, if possible. If they would just allow me to move whatever body part needed moving, I would promptly comply. I gave them my standard line: "I would rather be mad at myself than at you!" *fake smile*
[Why fake smile? When being ushered into the un/dressing area 10 minutes earlier, I told the X-ray tech that I had a condition that was very painful, called CRPS (and I threw in RSD, though I would rather not use that acronym). She nodded at me knowingly, and asked "Where?" I said, relieved that she knew the disease, and lapsing into med-speak: "All 4s." Upon reaching the procedure room, the first thing the radiologist asked? "What is CRPD and why do you have it in "all your four ribs?" Tell me that you could smile a smile of real confidence!]
It wasn't like I was asking after their CRPS protocol...
This caused a major disruption. Meetings were held. Deliberations were tense. Finally, word came down from on high that I could, indeed, forego the gown, and that touching would be limited to positioning the shoulder itself. Precisely at the moment when I was moving to remove the garment and take the sheet from the X-ray table in exchange, the tech grabbed my left arm at the wrist, pulled it straight, yanking the gown in just such a way that might be instructive of how-to-perform-an-Indian-burn. I ended up in tears and she was left rolling her eyes at the others, saying "Gaawwwd-d-d-d. I was just trying to help. Harrumph."
Off to a great start.
The switch was made and then I exited my wheelchair and fairly nimbly got on the table, all the time assuring them I was doing great, needed no help. Then, ahhh, I was in the right position, head on a pillow, legs carefully arranged out of the way of machines and higher-order living organisms. We were actually getting underway when... a nurse (there to observe, for some reason) grabbed my right leg, lifting it to put a knee support underneath it -- shoving the left leg, barking "Pick up that leg! Let's get these knees supported! You'll be much more comfortable!" My resultant near-seizure completely ruined the careful plotting done by the radiologist with the fluoroscope, who was preparing to inject the dye to gauge positioning.
At that point, I told her, and her companions, exactly what pieces of shit I thought they were. Yes, I lumped them all together: each one a perfectly formed, perfectly stinking piece of soft brown malleable shit.* It will be a week tomorrow afternoon, and I am not exagerrating the fact that she sent my pain levels off of my carefully maintained chart.
The radiologist was not able to get any fluid back from around my prosthesis. He did not even get back the saline he injected.
So yesterday, the orthopedic surgeon was not sure he could rely on the "no growth" status of the cultures they prepared that day. Plus, new plain films showed some questionable new dark areas. My fever was 101 before noon. "More tests," he crowed.
I got the call today that I was going to have two more procedures done next week. In the same hospital. In the same X-ray department.
What do I need to do differently?
Gee, I hope they don't remember me.
In the course of being treated for lupus, I developed avascular necrosis pretty much in every major joint and long bone, with the occasional minor joint tossed in for purposes of cosmic laughter. A life of joint replacements began... adrenal insufficiency... and so on... until there was finally a fall in an ICU that quickly resulted in the development of CRPS Type 2 -- nerve testing showed demonstrable damage to three major nerves in my right leg and the ulnar nerve in my left forearm. A fast glance confirmed the broken bones!
The CRPS 2 "spread" (a woefully inadequate and inaccurate verb) from my right leg to the left a year later. My right shoulder eventually demanded attention because I could no longer use that arm due to the pain of the collapsed joint. That shoulder had to be replaced, as the left had been three years earlier. CRPS 2 promptly set in on the right side. I was winning that war, I think, with daily visits to the gym (a Wellness Center) and rabid exercising and desensitization efforts at home.
Then I proceeded to take a swan dive, catching myself with... you guessed it: my right arm, shattering my elbow. Another major orthopedic surgery that left me near despair, and CRPS in full regalia in that arm.
Since January, I have been in what we thought was an unusually tenacious, ridiculously long SLE "flare" (another inaccurate and inadequate descriptor), with incredible levels of inflammation. I have been living on steroid tapers, on and off, off and on. Recent months, though, have also been marked by fevers well above "normal" low grade temperatures and a steadily rising white blood cell count. The most recent steroid taper seemed to help a great deal with most of my joint pain, with the exception of my right shoulder, which steadily hurt worse.
So back I have gone to the inimitable world of orthopedic surgeons, where I am blessed by the treatment of a superb surgeon who has the greatest of kick-ass nurses making sure that everything is done, and done well, with dispatch.
I have, in other words, been forced from the comfort of my internist and his office to the wider medical world of hospitals, clinic waiting areas, numerous X-ray suites, and exam and change rooms.
So what is my question for the mostly well-intentioned medical professionals that we encounter on our travels?
Because of my CRPS, I can be put into an orbit of pain if anyone, besides myself, touches my limbs. I won't insult you with a numerical citation from the pain scale -- by definition, my pain is never greater than 10, and I also like to leave 9 as an unrealized experience, so I will usually tell you "7 or 8." These grabs and touches, however, cause my pain level to shoot as high as I believe possible, and stay there from anywhere from a half-hour to a half-day. In addition, I will put on quite a color show, and run the gamut of temperatures from blue and ice-cold to lobster-red and quite hot. It ain't pretty but it makes for great after-dinner entertainment.
Whenever I have been hospitalized, Fearless Fred and La Belle Bianca have produced simple clear signs that were then placed on the door of my room, over the head of the bed, and at the foot of the bed. The hospitalizations of the past 3 years have all started in the ER and ended up in ICU, with a quick step-down to home afterward. Ventilators were involved...
What? You have a life? Why don't I just ask the question already?
Okay! Why, when a nurse, tech, or doctor has been informed of the ultra-sensitive extremities they are about to encounter, and when asked to refrain from touching, bumping, fondling said extremities -- Why is the first apparent impulse of these purportedly well-trained, presumptively compassionate individuals to touch, grab, move, "tuck in" said appendages?
Those compeled to "tuck in" are abominations. It bothers them to see my lower legs and arms disrupting the flat planes of their orderly bed linens. If I cannot tolerate the touch of your hand, how do you think the weight of sheets and blankets will feel? Why do you wait until I am asleep? Do you actually think that I won't be jerked back into consciousness, the ventilator alarming as crazily as my various nerve endings?
I can feel hysteria rising, and some bile, too. So I will calm myself and just tell you of the most recent example.
Friday, I had fluid aspirated from my right shoulder under fluoroscopy. The first problem came with the proffered gown (I guess that is a common problem!). It was a wrap-around design and both the material and the sleeves were aggravating the CRPS. I asked if I could not just cover myself with a sheet instead, especially since the gown was going to be half off during the procedure anyway. I quickly explained to the five other people in the small procedure room what CRPS was (insofar as anyone knows) and how I would very much appreciate not being touched without warning or permission, if possible. If they would just allow me to move whatever body part needed moving, I would promptly comply. I gave them my standard line: "I would rather be mad at myself than at you!" *fake smile*
[Why fake smile? When being ushered into the un/dressing area 10 minutes earlier, I told the X-ray tech that I had a condition that was very painful, called CRPS (and I threw in RSD, though I would rather not use that acronym). She nodded at me knowingly, and asked "Where?" I said, relieved that she knew the disease, and lapsing into med-speak: "All 4s." Upon reaching the procedure room, the first thing the radiologist asked? "What is CRPD and why do you have it in "all your four ribs?" Tell me that you could smile a smile of real confidence!]
It wasn't like I was asking after their CRPS protocol...
This caused a major disruption. Meetings were held. Deliberations were tense. Finally, word came down from on high that I could, indeed, forego the gown, and that touching would be limited to positioning the shoulder itself. Precisely at the moment when I was moving to remove the garment and take the sheet from the X-ray table in exchange, the tech grabbed my left arm at the wrist, pulled it straight, yanking the gown in just such a way that might be instructive of how-to-perform-an-Indian-burn. I ended up in tears and she was left rolling her eyes at the others, saying "Gaawwwd-d-d-d. I was just trying to help. Harrumph."
Off to a great start.
The switch was made and then I exited my wheelchair and fairly nimbly got on the table, all the time assuring them I was doing great, needed no help. Then, ahhh, I was in the right position, head on a pillow, legs carefully arranged out of the way of machines and higher-order living organisms. We were actually getting underway when... a nurse (there to observe, for some reason) grabbed my right leg, lifting it to put a knee support underneath it -- shoving the left leg, barking "Pick up that leg! Let's get these knees supported! You'll be much more comfortable!" My resultant near-seizure completely ruined the careful plotting done by the radiologist with the fluoroscope, who was preparing to inject the dye to gauge positioning.
At that point, I told her, and her companions, exactly what pieces of shit I thought they were. Yes, I lumped them all together: each one a perfectly formed, perfectly stinking piece of soft brown malleable shit.* It will be a week tomorrow afternoon, and I am not exagerrating the fact that she sent my pain levels off of my carefully maintained chart.
The radiologist was not able to get any fluid back from around my prosthesis. He did not even get back the saline he injected.
So yesterday, the orthopedic surgeon was not sure he could rely on the "no growth" status of the cultures they prepared that day. Plus, new plain films showed some questionable new dark areas. My fever was 101 before noon. "More tests," he crowed.
I got the call today that I was going to have two more procedures done next week. In the same hospital. In the same X-ray department.
What do I need to do differently?
Gee, I hope they don't remember me.
*(Puh-leeze, people, I've never called anyone "a piece of shit," much less elaborated upon the term... All I did was splutter.)
2 comments:
Jeez,I'm so sorry you're in such pain.I'm pretty sure most medical professionals aren't familiar with CRPS or RSD. Maybe state your response to being grabbed or touched in a way they can easily understand by telling them to treat you as if your limbs have been burned,that touch hurts exquisitely. Most people have no idea about this pain sydrome because it is a fairly new phenomena.
Maybe you can call the Radiology Office to talk to the nurse in charge.Ask if they are experienced in dealing with patients with this diagnosis(It doesn't sound like they are) and maybe you can educate them on it.
That's not something that you should have to do but it might help.
Good luck next week!
Thank you for your thoughtful comment, buttercup. Maybe if I take just a little more time prior to the procedures, the point will get across. Next up is a bone scan, then next week, a gallium scan. Outside of having to inject contrast material, there should not be much need for touching! BTW, I like your blog -- very diverse.
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