Late Posting
Morning edit:
Hmm... I should quit. The nurse was right about having trouble sleeping tonight, though I wouldn't describe this as "wired." It is 2:30 in the morning, and while I feel terribly fatigued, my mind is still going 90-miles-a-minute and I just realized this is PAGES long. Packed with fairly coherent details. LOL Enjoy!
----------------------
The constant action of the morning was just the start of an on-going day of it. I had no spaces to fill with needlepoint or painting, except in waiting rooms - not even time for a rather-needed shower. I like showering daily and wish I could have presented my fresh self to everyone I got to see today.
My escort was a nice hispanic gal that arrived rather tiredly shut down after waiting a bit for me. I overheard her offer her name to someone when she arrived as either Rachel or Raquel, so when she answered my offer to exchange names with merely "Rachel," I responded in Spanish and triggered a smiling, cheery conversation that had her sitting with me in the waiting room until she was called off for someone else. We talked about the great benefits of bilingual development and the neurological connections that such exposure gives a child.
I had a fairly long wait for Echo-cardiogram (a couple of emergencies and some equipment issues) but then the technician was again lighted up with a smile and cheery request for her name, and she shared her enthusiasm and competence in her specialty while going over many of the details of what we were viewing and some of her experience with past Carney patients. The cardiac myxoma is fairly likely to re-appear.
Apparently I was actually somewhat fortunate that my schwannoma had that little pip of residua slide over a ridge in my skull and be unreachable. We treated it and the area immediately around it very precisely with the focused radiation of a Gamma Knife a few months after surgery, and it has been asymptomatic ever since - completely nonreactive tissue. With the heart tumor we can't pinpoint the exact position of the point of connection, can't radiate precisely on a moving heart and so can't permanently shut it down. Fortunately, echo-cardiograms are a lot cheaper than MRIs and keeping an eye on it will be easy.
I got back to my room in time for my 10:00 appointment with the Physical Therapist from Recreational Therapy, and we finished my evaluation for using the gym and setting up an exercise program just in time for my nurse to need vitals and give me my next Nystatin. We scheduled to meet tomorrow morning in the gym at 10:00. Grace popped in to say "Hi," and then poor Greg called, triggering such a change from my droopey fatigue to glowing warmth that she laughed and stepped out so he and I could talk.
A different Physical Therapist from Rehabilitation Therapy came up to discuss my back injuries and scoliosis, so that filled my time up through the arrival of my lunch and 12-o'clock dose. The full list of all my falls started with the untreated trampoline accident at the beginning of the fall semester in 2002 and is actually shockingly extensive. Every time, I see I was fatigued, pushing myself, and missed a step or didn't react fast enough, especially the ones in the last two years.
It makes me extremely hesitant to do my stairs tomorrow when my dexamethazone dosage will bring my cortisol to a personal record high. I think I will simply explore as much of the fifth floor (plenty here, especially in the old building) as I can for a half hour, instead of the more rigorous effort for just fifteen minutes. I can just see myself missing a step and actually repeating the embarrassing and painful moments of those past falls - here, where I've found out why, of all places.
She tells me I'm already aware of most of the rehabilitation exercises and treatments that she would recommend, but offered to document it for me so that I can do it all to achieve the level of strength and flexibility I want in the most beneficial way possible. She clarified some of my vague memories and pinpointed the exercises that will most relieve my back pain and abdominal fat.
Rehabilitation is really time consuming. When you are well, you use your muscles constantly, together, in ordinary daily movement. Rebuilding your ability to thoughtlessly perform those standard things requires rather precise, focused exercises on individual muscles so that they all coordinate again without pain. And you have a LOT of muscles. Focusing on each group individually with even just six or ten reps, two or three times a day, means you put in as much as an hour or two, every day. And that's just the focused strength and flexibility rehabilitation. Endurance rehabilitation, for cardio and pulmonary capacity, is another half-hour or hour every day to fit in even just a mile or two of walking, say.
She referred me to the physiatrist, Dr. Joe, with whom I will consult tomorrow at 1:00, and who will likely refer me to Dr. Ge for both acupressure and electro-acupuncture. O.o Acupressure will teach me the focus-points for triggering hormonal releases and pain resolution rather like really good Swedish massage and the See-Clearly Eye Method do. I've reacted to both of those well, so it should be a good fit for me. Electro-acupuncture intrigues me because I've had electro-stim before during physical therapy for my workers' comp fall, and have heard nothing but good about acupuncture from the few that I know who have tried it. LOL There's an acupuncture specialist on my morning walk who may just get a new client if this REALLY works out. Dr. Joe may also be the one to place the order for massage therapy.
I finished lunch at about twelve-thirty and was really feeling my noon dose. I thought I would hit Medicolegal for the copies of my tests and films I ordered yesterday. They had expected me around 11:00, but the physical therapy consultations wiped that out. I verified they were ready before heading down and spent time on the way back checking out all the aquariums (four, at least three of those salt water, the other: fresh-water koi) and a few of the art displays and the Women's Health Issues table of free brochures. Delightful not to be interested in most of them. "What is Sleep?" and "Cold or Allergy?" - but none of the really scary ones, Thank God.
That got me back to 5-NW with about an hour free before my 2-o'clock appointment at the Dermatology Clinic, and I hoped to pop down to X-ray for my c-spinal series for scoliosis, but I heard Dr. Stratakis was making the rounds on the one day he's in the country this week, so I stuck around and talked with him and Meg Keil about the deluge of questions I'd finally gotten to them since talking to Grace.
(Good grief! That entire paragraph is one sentence... You can see how convoluted and inter-related everything is.)
We pinned down my three-night pass before surgery (hurray!). As immediate family of a qualifying protocol patient, he gets upgraded to being included in some of the Recreation Therapy things like massage therapy(!), so I get to pamper him a bit when he gets here. We confirmed the need to check in first-thing Monday before surgery for all my pre-op consultations with the Dr. Stratakis, the surgeon, assisting fellow and anesthesiologists, so I'm definitely not going to be able to meet Mom at the Baltimore airport that evening. Much of the additional testing and scans usually performed pre-op to confirm Carney's will be performed post-op because the diagnosis is already solid and their results will be unaffected by post-operative painkillers or hormonal shifts while we adjust my replacement dosages. Most of my questions about my past medical histories require my getting them to release NIH to release them to me, now, so I have to request their authorization forms to send back.
Let's see... That gets me to my escort to the dermatology clinic, another lady vaguely tired and shut down who brightened with my exchange of names and appreciative chatter. Asrat (pronounced ahs-rot) opened up enough to assure me that all the issues beyond my control are in God's hands, so I could then laugh and repeat Great-Aunt Betty's post from yesterday. I managed four stitches on my ladybug before they took me back, but then finished the rest of that green thread before the doctor popped in to verify my identity and then left me to his medical assistant to examine. He came back in about fifteen minutes and repeated a lot of the exam, but the intern hadn't missed much.
I've always thought I had tons of moles. I do - mostly little, round, sharp-edged, "cafe-au-lait" colored spots that anybody would want to watch over time and sun-exposure for cancerous changes. The spots under my eyes, on the edges of my eyelids, on my lip and possibly one on the left side of my neck - these are what they call "ink-spot" lentigos. They are darker and when looked at really closely look like an ink pen touched down and leaked into the fine lines of my skin, radiating out.
No obvious myxomas or melanomas, and I didn't get the word written down for the harmless, tiny, zit-like cysts that beauticians got restricted from popping out with a needle just a few years ago. Just in time for the gal I had do my make-over for my wedding to still have the equipment, but quick, check the door for observers before, quick, making them disappear. LOL I've got two more now that would require a prescription and a licensed surgeon to get removed.
Whew... Then what? Ah, the receptionist called Escort to take me to Clinical Photography. I borrowed her scissors to snip my green thread, and she was fascinated by how much I've finished and could see it's a very simple pattern - no cross-stitching, half-stitches or fancy back-stitches to confuse us - so we spent quite a while pinning down where she could get one and what to look for. The escort was the same Islamic lady who had brought me up, and we all smiled and chattered about some of the different projects they had seen other patients working on.
Clinical Photography was ready for me, in spite of being rather early - which was good because the Cushing protocol is full-body shots for the shape given by the odd fat placement, then medium-range shots of each section of the body for the striations and skin pigmentation, then close-up detail of all the above and my hair-growth patterns. Plus, then, the Carney documentation of all my lentigos AND Dermatology's documentation of every one of my moles. LOL So, I now will have a REALLY broad collection of "before" pictures. I SO look forward to fitting back into my homecoming dress and triggering things like the muttered moan from the line at the men's bathroom that I passed at a year-end office party back when I was 22. LOL Hearing admiring whistles from passing trucks on my morning walks. Giving Greg the trim, flexible, headache-free life enthusiast he first knew.
That got me "home" - exhausted, back-achy - in time to order dinner. It's so funny how I resist taking Tylenol, or any "indulgent" pain-killer. My nurse badgered me into it, really, and about a half-an-hour later - ta-dah! - I was off to chat cheerily with Grace until dinner. I've just gotten so used to pain. I rated this a three of ten with my backache and just vague aching apathy of fatigue, and so "not bad" which doesn't "merit" a drug. Looking back at it, I recognize it is draining and leaves me without much interest in getting out and doing anything of real interest, like visit with someone or research more of my condition, instead of dully occupying like solitary needlepoint. I don't usually take a Tylenol until I hit a five or six, and that's just so I can benefit from resting, again, just shutting down.
Turning on, waking up, that's worth a Tylenol. I must remember that. I'm so excited by the prospect of not needing the Tylenol to feel that alive.
Wow. I started this at 10:30. That's four hours ago, and I don't peak on this stuff until TOMORROW night. Lord, have mercy... I'm going to shut down and see if the fatigue will overrun the mental hum. Maybe I'll just have really cool dreams! :-)
Hmm... I should quit. The nurse was right about having trouble sleeping tonight, though I wouldn't describe this as "wired." It is 2:30 in the morning, and while I feel terribly fatigued, my mind is still going 90-miles-a-minute and I just realized this is PAGES long. Packed with fairly coherent details. LOL Enjoy!
----------------------
The constant action of the morning was just the start of an on-going day of it. I had no spaces to fill with needlepoint or painting, except in waiting rooms - not even time for a rather-needed shower. I like showering daily and wish I could have presented my fresh self to everyone I got to see today.
My escort was a nice hispanic gal that arrived rather tiredly shut down after waiting a bit for me. I overheard her offer her name to someone when she arrived as either Rachel or Raquel, so when she answered my offer to exchange names with merely "Rachel," I responded in Spanish and triggered a smiling, cheery conversation that had her sitting with me in the waiting room until she was called off for someone else. We talked about the great benefits of bilingual development and the neurological connections that such exposure gives a child.
I had a fairly long wait for Echo-cardiogram (a couple of emergencies and some equipment issues) but then the technician was again lighted up with a smile and cheery request for her name, and she shared her enthusiasm and competence in her specialty while going over many of the details of what we were viewing and some of her experience with past Carney patients. The cardiac myxoma is fairly likely to re-appear.
Apparently I was actually somewhat fortunate that my schwannoma had that little pip of residua slide over a ridge in my skull and be unreachable. We treated it and the area immediately around it very precisely with the focused radiation of a Gamma Knife a few months after surgery, and it has been asymptomatic ever since - completely nonreactive tissue. With the heart tumor we can't pinpoint the exact position of the point of connection, can't radiate precisely on a moving heart and so can't permanently shut it down. Fortunately, echo-cardiograms are a lot cheaper than MRIs and keeping an eye on it will be easy.
I got back to my room in time for my 10:00 appointment with the Physical Therapist from Recreational Therapy, and we finished my evaluation for using the gym and setting up an exercise program just in time for my nurse to need vitals and give me my next Nystatin. We scheduled to meet tomorrow morning in the gym at 10:00. Grace popped in to say "Hi," and then poor Greg called, triggering such a change from my droopey fatigue to glowing warmth that she laughed and stepped out so he and I could talk.
A different Physical Therapist from Rehabilitation Therapy came up to discuss my back injuries and scoliosis, so that filled my time up through the arrival of my lunch and 12-o'clock dose. The full list of all my falls started with the untreated trampoline accident at the beginning of the fall semester in 2002 and is actually shockingly extensive. Every time, I see I was fatigued, pushing myself, and missed a step or didn't react fast enough, especially the ones in the last two years.
It makes me extremely hesitant to do my stairs tomorrow when my dexamethazone dosage will bring my cortisol to a personal record high. I think I will simply explore as much of the fifth floor (plenty here, especially in the old building) as I can for a half hour, instead of the more rigorous effort for just fifteen minutes. I can just see myself missing a step and actually repeating the embarrassing and painful moments of those past falls - here, where I've found out why, of all places.
She tells me I'm already aware of most of the rehabilitation exercises and treatments that she would recommend, but offered to document it for me so that I can do it all to achieve the level of strength and flexibility I want in the most beneficial way possible. She clarified some of my vague memories and pinpointed the exercises that will most relieve my back pain and abdominal fat.
Rehabilitation is really time consuming. When you are well, you use your muscles constantly, together, in ordinary daily movement. Rebuilding your ability to thoughtlessly perform those standard things requires rather precise, focused exercises on individual muscles so that they all coordinate again without pain. And you have a LOT of muscles. Focusing on each group individually with even just six or ten reps, two or three times a day, means you put in as much as an hour or two, every day. And that's just the focused strength and flexibility rehabilitation. Endurance rehabilitation, for cardio and pulmonary capacity, is another half-hour or hour every day to fit in even just a mile or two of walking, say.
She referred me to the physiatrist, Dr. Joe, with whom I will consult tomorrow at 1:00, and who will likely refer me to Dr. Ge for both acupressure and electro-acupuncture. O.o Acupressure will teach me the focus-points for triggering hormonal releases and pain resolution rather like really good Swedish massage and the See-Clearly Eye Method do. I've reacted to both of those well, so it should be a good fit for me. Electro-acupuncture intrigues me because I've had electro-stim before during physical therapy for my workers' comp fall, and have heard nothing but good about acupuncture from the few that I know who have tried it. LOL There's an acupuncture specialist on my morning walk who may just get a new client if this REALLY works out. Dr. Joe may also be the one to place the order for massage therapy.
I finished lunch at about twelve-thirty and was really feeling my noon dose. I thought I would hit Medicolegal for the copies of my tests and films I ordered yesterday. They had expected me around 11:00, but the physical therapy consultations wiped that out. I verified they were ready before heading down and spent time on the way back checking out all the aquariums (four, at least three of those salt water, the other: fresh-water koi) and a few of the art displays and the Women's Health Issues table of free brochures. Delightful not to be interested in most of them. "What is Sleep?" and "Cold or Allergy?" - but none of the really scary ones, Thank God.
That got me back to 5-NW with about an hour free before my 2-o'clock appointment at the Dermatology Clinic, and I hoped to pop down to X-ray for my c-spinal series for scoliosis, but I heard Dr. Stratakis was making the rounds on the one day he's in the country this week, so I stuck around and talked with him and Meg Keil about the deluge of questions I'd finally gotten to them since talking to Grace.
(Good grief! That entire paragraph is one sentence... You can see how convoluted and inter-related everything is.)
We pinned down my three-night pass before surgery (hurray!). As immediate family of a qualifying protocol patient, he gets upgraded to being included in some of the Recreation Therapy things like massage therapy(!), so I get to pamper him a bit when he gets here. We confirmed the need to check in first-thing Monday before surgery for all my pre-op consultations with the Dr. Stratakis, the surgeon, assisting fellow and anesthesiologists, so I'm definitely not going to be able to meet Mom at the Baltimore airport that evening. Much of the additional testing and scans usually performed pre-op to confirm Carney's will be performed post-op because the diagnosis is already solid and their results will be unaffected by post-operative painkillers or hormonal shifts while we adjust my replacement dosages. Most of my questions about my past medical histories require my getting them to release NIH to release them to me, now, so I have to request their authorization forms to send back.
Let's see... That gets me to my escort to the dermatology clinic, another lady vaguely tired and shut down who brightened with my exchange of names and appreciative chatter. Asrat (pronounced ahs-rot) opened up enough to assure me that all the issues beyond my control are in God's hands, so I could then laugh and repeat Great-Aunt Betty's post from yesterday. I managed four stitches on my ladybug before they took me back, but then finished the rest of that green thread before the doctor popped in to verify my identity and then left me to his medical assistant to examine. He came back in about fifteen minutes and repeated a lot of the exam, but the intern hadn't missed much.
I've always thought I had tons of moles. I do - mostly little, round, sharp-edged, "cafe-au-lait" colored spots that anybody would want to watch over time and sun-exposure for cancerous changes. The spots under my eyes, on the edges of my eyelids, on my lip and possibly one on the left side of my neck - these are what they call "ink-spot" lentigos. They are darker and when looked at really closely look like an ink pen touched down and leaked into the fine lines of my skin, radiating out.
No obvious myxomas or melanomas, and I didn't get the word written down for the harmless, tiny, zit-like cysts that beauticians got restricted from popping out with a needle just a few years ago. Just in time for the gal I had do my make-over for my wedding to still have the equipment, but quick, check the door for observers before, quick, making them disappear. LOL I've got two more now that would require a prescription and a licensed surgeon to get removed.
Whew... Then what? Ah, the receptionist called Escort to take me to Clinical Photography. I borrowed her scissors to snip my green thread, and she was fascinated by how much I've finished and could see it's a very simple pattern - no cross-stitching, half-stitches or fancy back-stitches to confuse us - so we spent quite a while pinning down where she could get one and what to look for. The escort was the same Islamic lady who had brought me up, and we all smiled and chattered about some of the different projects they had seen other patients working on.
Clinical Photography was ready for me, in spite of being rather early - which was good because the Cushing protocol is full-body shots for the shape given by the odd fat placement, then medium-range shots of each section of the body for the striations and skin pigmentation, then close-up detail of all the above and my hair-growth patterns. Plus, then, the Carney documentation of all my lentigos AND Dermatology's documentation of every one of my moles. LOL So, I now will have a REALLY broad collection of "before" pictures. I SO look forward to fitting back into my homecoming dress and triggering things like the muttered moan from the line at the men's bathroom that I passed at a year-end office party back when I was 22. LOL Hearing admiring whistles from passing trucks on my morning walks. Giving Greg the trim, flexible, headache-free life enthusiast he first knew.
That got me "home" - exhausted, back-achy - in time to order dinner. It's so funny how I resist taking Tylenol, or any "indulgent" pain-killer. My nurse badgered me into it, really, and about a half-an-hour later - ta-dah! - I was off to chat cheerily with Grace until dinner. I've just gotten so used to pain. I rated this a three of ten with my backache and just vague aching apathy of fatigue, and so "not bad" which doesn't "merit" a drug. Looking back at it, I recognize it is draining and leaves me without much interest in getting out and doing anything of real interest, like visit with someone or research more of my condition, instead of dully occupying like solitary needlepoint. I don't usually take a Tylenol until I hit a five or six, and that's just so I can benefit from resting, again, just shutting down.
Turning on, waking up, that's worth a Tylenol. I must remember that. I'm so excited by the prospect of not needing the Tylenol to feel that alive.
Wow. I started this at 10:30. That's four hours ago, and I don't peak on this stuff until TOMORROW night. Lord, have mercy... I'm going to shut down and see if the fatigue will overrun the mental hum. Maybe I'll just have really cool dreams! :-)