My dear friend Manju (a frequent commentator here and the writer of "Of Cabbages and Kings" blog, link to the right) is a resident of Mumbai, where today there has been yet another hideous, pointless theft of innocent lives. The terror continues for the hostages and the citizens of Mumbai.
Manju says she has been glued to the television all day. It is the middle of the night there. She is home and safe. For now. Her heartbroken and heartbreaking words: "In one day Mumbai seems to have gone from being a commercial centre to pure anarchy."
If it is your belief system, please pray for Manju and her family. For the residents of Mumbai and India. For all of us in this fragile world.
If it is not your belief, then please at least keep them in your thoughts and hearts.
Be safe Manju. We love you.
Wednesday, November 26, 2008
Friday, November 21, 2008
In The Depths
I unexpectedly slid into a wicked black hole a few weeks ago. Awfully dark and terribly deep. And silly me, there I wallowed, remembering hardly any of the tools I had on me to get back up.
Thank you to those of you who have reached in to help haul me out. I am more grateful than you can ever know.
In maritime/hydrographic use, depth means the vertical distance from the plane of the hydrographic datum to the bed of the sea, lake or river.
ha ha ha ha ha ha ha ha ha ha ha ha
What the heck am I depressed about?!?! At least I never, ever have to understand what that means.
I am working on some posts, so I will be back to what passes for normal for me soon. Fingers crossed. :)
Wednesday, November 5, 2008
God Bless America
For the first time in a very long time, I am proud to be an American.
Barack Obama, with his dignity, intelligence and stature, will now be the face of leadership for the United States. A face that represents so much of our rich, cross-cultural society. A face that doesn’t wear a vacuous smirk. A face that reflects grave comprehension of the pain and fear our citizens are experiencing in these terrible times. A face that had no advantages apart from brains and democracy to lead him to the White House.
John McCain is clearly a good and brave man. As Obama said last night, McCain has experienced horrors that none of could us imagine and few of us could endure unscathed. McCain was gracious and generous in his concession speech, markedly exhibiting distaste and disapproval when some of his audience contemptuously booed at the mention of their new president’s name. I believe him in his pledge that he will do everything in his power to help Obama as he leads our country.
I want to believe McCain, because working together is the only way we are going to be able to move forward. Working together, our elected officials can restore the good name and credibility of the United States. Together they can create an effective machine of peace and a model of honorable and responsible leadership.
As Helen Keller once said (in my Quotes to the right), “Alone we can do so little, together we can do so much.” Together, we chose Barack Obama.
Barack Obama, with his dignity, intelligence and stature, will now be the face of leadership for the United States. A face that represents so much of our rich, cross-cultural society. A face that doesn’t wear a vacuous smirk. A face that reflects grave comprehension of the pain and fear our citizens are experiencing in these terrible times. A face that had no advantages apart from brains and democracy to lead him to the White House.
John McCain is clearly a good and brave man. As Obama said last night, McCain has experienced horrors that none of could us imagine and few of us could endure unscathed. McCain was gracious and generous in his concession speech, markedly exhibiting distaste and disapproval when some of his audience contemptuously booed at the mention of their new president’s name. I believe him in his pledge that he will do everything in his power to help Obama as he leads our country.
I want to believe McCain, because working together is the only way we are going to be able to move forward. Working together, our elected officials can restore the good name and credibility of the United States. Together they can create an effective machine of peace and a model of honorable and responsible leadership.
As Helen Keller once said (in my Quotes to the right), “Alone we can do so little, together we can do so much.” Together, we chose Barack Obama.
God bless America.
Monday, November 3, 2008
VOTE!
Every vote counts!!! YOU count!!
Not voting means this could happen:
http://www.cnnbcvideo.com/?referred_by=13903505-dBa.nCx&combined=John%20Smith&first=John&name_id=6935230&last=Smith&id=&nid=J0xAn_iKheME37_1AusXTjY5MzUyMzA-
Would you want that to be you?!?!? I didn’t think so.
No matter who you vote for, just do it.
Not voting means this could happen:
http://www.cnnbcvideo.com/?referred_by=13903505-dBa.nCx&combined=John%20Smith&first=John&name_id=6935230&last=Smith&id=&nid=J0xAn_iKheME37_1AusXTjY5MzUyMzA-
Would you want that to be you?!?!? I didn’t think so.
No matter who you vote for, just do it.
Saturday, November 1, 2008
My Journey, Part 4
And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.
Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.
While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.
About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.
The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.
Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.
THE OTHER SHOE DROPS
I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.
Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.
He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”
There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.
In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.
The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.
I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.
So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.
My friends tell me if anyone can handle this, it would be me.
Time will tell.
Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.
While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.
About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.
The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.
Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.
THE OTHER SHOE DROPS
I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.
Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.
He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”
There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.
In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.
The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.
I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.
So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.
My friends tell me if anyone can handle this, it would be me.
Time will tell.
Thursday, October 30, 2008
My Journey, Part 3
I have raised my children alone for most of their lives, even before my husband died. He was a tugboat captain who was away as much as he was home. I was the homemaker, the disciplinarian, the homework helper, the story reader and, finally, the breadwinner. I didn’t get sniffles, I didn’t take naps. I had my last two babies at home. I was indestructible.
Suddenly, here I was, on the other side. It had been me before assessing patients, asking embarrassing questions, performing humiliating procedures, examining private parts with clinical detachment. But now a nurse asked me in front of my son when my last period was. Another came in while my son and pastor were chatting with me and pleasantly, loudly inquired if I had urinated yet. The neurologist, while surrounded by four or five eager residents, asked me if I had noticed that some of my symptoms had begun as I entered menopause. This was the day after he had gallantly told me I was too old to have MS. “ I haven’t GONE into menopause yet, for Pete’s sake. I am a freak of nature, still fertile at fifty.” The residents cracked up, but he looked irritated, as though I were breaking the etiquette rules of being paralyzed and in a hospital. Levity needed to be checked at the door.
There seemed to be a concerted, and successful, effort to make me feel old, unattractive and nothing more than a mass of body functions. Were they having meetings at night trying to think of the most demeaning treatments and/or questions?
The adorable medical student who was assigned to me was required, as part of his report, to interview me regarding my sexual history. I’m a mature adult, I thought, no problem. First question: Are you sexually active? Ok, so I haven’t had a date in, cough, cough, ok, a while, but I would be if I could be. I assumed being ready, willing and able qualified. The fact that I was not actually having sex with anyone at the moment was, in my opinion, a technicality. These thoughts went through my head so fast they barely registered before I answered, dope that I am. So, yes, I replied nonchalantly, blissfully unprepared for his reaction. “REALLY?!?!” he exclaimed in clear incredulity, if not disgust. He almost fell off his chair. I was mortified. I obviously looked heaps worse than even I thought. Next question: Are you involved with men, women or both? Now it was my turn to be shocked: “Or both”!?!?!?! I suppose I should have been flattered at the implication I could attract both genders when the fact was at this point I could scarcely scrape up one member of the opposite sex. “Oh my God! Men, men! Just men, only men, nothing but men.” It was starting to sound like entire Sixth Fleet, so I stopped short. “Oh my God, but not too many men, not that many.” I was babbling. Next question: how many? Oh crap. I came of age in the late Sixties and early Seventies. This kid is going to think I am a complete pig. So I lied, guessing at what felt like a decorous number for a fat fifty year old. “Four?” I offered. There were no gasps of either shock or pity, so I relaxed a little. Further questions about birth control, childbirth, number of pregnancies, number of children, forced or unwanted sex. Answers: Always careful, natural, 4, 4, no. Lie, truth, truth, truth, lie. No way was I going into any more detail about my life and hard times with this sweet little boy.
I discovered that anyone would have claustrophobia in an MRI coffin. Xanax became my new best friend. But even that was not too much help for the brain MRI where not only are you encased in a 2 foot diameter tube, but you have a cage-like mask snapped in place over your face. And you can’t move. For over an hour.
The neurologist pushed for a lumbar puncture, which I did not want. I agreed tentatively and reluctantly after the promise of heavy-duty sedation. Oh, and a possible diagnosis and, yay, best of all, discharge! “I want to be sedated within an inch of my life”, I told my regular doctor that morning when he stopped in to see me. I love him because he is so good-natured and sympathetic. “ I don’t blame you.” he replied reasonably. However, unbeknownst to me, this slipped through the cracks and nothing extra was ordered.
The obnoxious nurse I had that day came in while I was saying this to my doctor and, without speaking to me or introducing himself, started asking him questions about “she” and “her”, i.e. ME!!! When he paused to take a breath, I firmly stated to him, “SHE would like to be told ahead of time when SHE'S going for HER lumbar puncture.” My doctor chuckled, but the nurse just glared at me and went back to what he had been saying. Twenty minutes later, he came in and said, “Transport is here for your spinal tap.” I said, “But I haven’t had any sedation. And you never told me.” He checked my chart and said, “Well I can give you .5 milligrams of Xanax.”
Considering I wanted to be at a point where they could tell me they were going to remove cerebrospinal fluid through my eyeballs and I would say okey dokey, .5 milligrams of Xanax was not going to even begin to cut it. And I told him so. He started huffing and puffing. I was obviously very inconvenient and annoying. “I would have to call your doctor for something more.” “Knock yourself out then”, I replied with all the dignity and indignation I could muster while wearing blue gingham pajamas. He trumped me though, not just by being fully dressed, but also by spitefully canceling the crucial test I already didn’t want. That’s when I had my melt down, getting on the phone to the nursing supervisor and starting to pack. Within five minutes I had five doctors and three nurses in my room, with soothing, psychiatric, talking-someone-off-the-ledge voices, offering me massive doses of Valium. They had me at 10 milligrams.
A lumbar puncture is a diagnostic test that withdraws spinal fluid by sticking a large gauge needle directly into the space right around your spinal cord. YOUR SPINAL CORD! If that wouldn’t freak you out you would have to be a stone and of course would have no spinal cord so you would have no reason to be upset. Mine was to be done guided by x-ray. I assumed that was because I was fat, which only added to my distress, but later found that because it was more precise with x-ray guidance, the sample was better diagnostically. Silly me. Afterwards, my regular doctor acknowledged he had never experienced one and asked me how it had gone. I was chastened to admit that despite my fear and general carry on, it had not been that painful, just merely awful. To feel the searing burn of the anesthetic, the pressure and almost audible pop of the insertion and the shocks as nerves are stimulated is beyond unpleasant, even while stuffed to the gills with Valium.
Next: So what's wrong with me, besides the obvious?!?!
Suddenly, here I was, on the other side. It had been me before assessing patients, asking embarrassing questions, performing humiliating procedures, examining private parts with clinical detachment. But now a nurse asked me in front of my son when my last period was. Another came in while my son and pastor were chatting with me and pleasantly, loudly inquired if I had urinated yet. The neurologist, while surrounded by four or five eager residents, asked me if I had noticed that some of my symptoms had begun as I entered menopause. This was the day after he had gallantly told me I was too old to have MS. “ I haven’t GONE into menopause yet, for Pete’s sake. I am a freak of nature, still fertile at fifty.” The residents cracked up, but he looked irritated, as though I were breaking the etiquette rules of being paralyzed and in a hospital. Levity needed to be checked at the door.
There seemed to be a concerted, and successful, effort to make me feel old, unattractive and nothing more than a mass of body functions. Were they having meetings at night trying to think of the most demeaning treatments and/or questions?
The adorable medical student who was assigned to me was required, as part of his report, to interview me regarding my sexual history. I’m a mature adult, I thought, no problem. First question: Are you sexually active? Ok, so I haven’t had a date in, cough, cough, ok, a while, but I would be if I could be. I assumed being ready, willing and able qualified. The fact that I was not actually having sex with anyone at the moment was, in my opinion, a technicality. These thoughts went through my head so fast they barely registered before I answered, dope that I am. So, yes, I replied nonchalantly, blissfully unprepared for his reaction. “REALLY?!?!” he exclaimed in clear incredulity, if not disgust. He almost fell off his chair. I was mortified. I obviously looked heaps worse than even I thought. Next question: Are you involved with men, women or both? Now it was my turn to be shocked: “Or both”!?!?!?! I suppose I should have been flattered at the implication I could attract both genders when the fact was at this point I could scarcely scrape up one member of the opposite sex. “Oh my God! Men, men! Just men, only men, nothing but men.” It was starting to sound like entire Sixth Fleet, so I stopped short. “Oh my God, but not too many men, not that many.” I was babbling. Next question: how many? Oh crap. I came of age in the late Sixties and early Seventies. This kid is going to think I am a complete pig. So I lied, guessing at what felt like a decorous number for a fat fifty year old. “Four?” I offered. There were no gasps of either shock or pity, so I relaxed a little. Further questions about birth control, childbirth, number of pregnancies, number of children, forced or unwanted sex. Answers: Always careful, natural, 4, 4, no. Lie, truth, truth, truth, lie. No way was I going into any more detail about my life and hard times with this sweet little boy.
I discovered that anyone would have claustrophobia in an MRI coffin. Xanax became my new best friend. But even that was not too much help for the brain MRI where not only are you encased in a 2 foot diameter tube, but you have a cage-like mask snapped in place over your face. And you can’t move. For over an hour.
The neurologist pushed for a lumbar puncture, which I did not want. I agreed tentatively and reluctantly after the promise of heavy-duty sedation. Oh, and a possible diagnosis and, yay, best of all, discharge! “I want to be sedated within an inch of my life”, I told my regular doctor that morning when he stopped in to see me. I love him because he is so good-natured and sympathetic. “ I don’t blame you.” he replied reasonably. However, unbeknownst to me, this slipped through the cracks and nothing extra was ordered.
The obnoxious nurse I had that day came in while I was saying this to my doctor and, without speaking to me or introducing himself, started asking him questions about “she” and “her”, i.e. ME!!! When he paused to take a breath, I firmly stated to him, “SHE would like to be told ahead of time when SHE'S going for HER lumbar puncture.” My doctor chuckled, but the nurse just glared at me and went back to what he had been saying. Twenty minutes later, he came in and said, “Transport is here for your spinal tap.” I said, “But I haven’t had any sedation. And you never told me.” He checked my chart and said, “Well I can give you .5 milligrams of Xanax.”
Considering I wanted to be at a point where they could tell me they were going to remove cerebrospinal fluid through my eyeballs and I would say okey dokey, .5 milligrams of Xanax was not going to even begin to cut it. And I told him so. He started huffing and puffing. I was obviously very inconvenient and annoying. “I would have to call your doctor for something more.” “Knock yourself out then”, I replied with all the dignity and indignation I could muster while wearing blue gingham pajamas. He trumped me though, not just by being fully dressed, but also by spitefully canceling the crucial test I already didn’t want. That’s when I had my melt down, getting on the phone to the nursing supervisor and starting to pack. Within five minutes I had five doctors and three nurses in my room, with soothing, psychiatric, talking-someone-off-the-ledge voices, offering me massive doses of Valium. They had me at 10 milligrams.
A lumbar puncture is a diagnostic test that withdraws spinal fluid by sticking a large gauge needle directly into the space right around your spinal cord. YOUR SPINAL CORD! If that wouldn’t freak you out you would have to be a stone and of course would have no spinal cord so you would have no reason to be upset. Mine was to be done guided by x-ray. I assumed that was because I was fat, which only added to my distress, but later found that because it was more precise with x-ray guidance, the sample was better diagnostically. Silly me. Afterwards, my regular doctor acknowledged he had never experienced one and asked me how it had gone. I was chastened to admit that despite my fear and general carry on, it had not been that painful, just merely awful. To feel the searing burn of the anesthetic, the pressure and almost audible pop of the insertion and the shocks as nerves are stimulated is beyond unpleasant, even while stuffed to the gills with Valium.
Next: So what's wrong with me, besides the obvious?!?!
Tuesday, October 28, 2008
My Journey, Part 2
The second week in August I started feeling an odd sensation gripping my waist, like something was tightly wrapped around my middle. It was hard to take a deep breath and I would be winded after just a few steps. I had incredible pain in my back. The prospect of stairs, never mind the actual fact of having to climb them, practically brought me to tears. I had to attend frequent meetings in another building, down the hill from the main facility where I worked. It was so difficult to walk back up that I found myself actually praying God would get me back without disgracing myself by falling on my face halfway there. He always came through for me, I always made it, although I would be sweating and literally gasping for air. I finally realized I had to do something. So with all the wisdom of my 19 years of education, my 13 years as a nurse and my 50 years of life, I made an appointment at last. With a chiropractor.
To be fair, he listened and gave me a seemingly thorough neurological exam, the results of which should have sent me flying to an emergency room. A test for proprioception, outstretched right pinkie to nose with my eyes closed, overshot my nose and landed at my left eye every single time. Over and over again I missed abysmally. Hmm, he said, rather than the totally appropriate, holy shit!
How long have you had a problem with bradycardia, he asked. Never. Well your pulse is 40. FORTY!? He could not get a blood pressure. These alarming signs still did not send me to the hospital. He said he believed it was the vitamins I had begun taking for the leg spasms I had been having that were keeping me up at night (more ignored symptoms). Ok, if he was selling, I could buy that. He adjusted my spine. I went back for four more visits over two weeks. Then I started having trouble walking. That was on a Thursday. I went to see him Friday night, my legs scissoring as I struggled to put one foot in front of the other. He tested the strength in my toes. My left foot and toes offered no resistance. None. Zero. They were floppy and flaccid. He would not adjust me and said he thought it was time for an MRI. It was actually time for an ambulance, but I was in total denial. He looked at me gravely and asked, “What are you most afraid of?” Because I truly believed there was nothing really wrong with me, there could be nothing wrong with me, I laughed and said, “Well, that I have a debilitating neurological disease that will kill me.” He didn’t smile. Uh-oh.
That night I was fascinated by my useless left foot. My leg was now so weak that I couldn’t lift it to cross it over the other when I was sitting in bed. Saturday I spent cooking for our church picnic the next day. I was dragging my leg as I scuttled around my kitchen like Quasimodo. I went to bed that night all ready for the picnic, still insanely believing, hope against hope, that these were some transient aberrations. I woke up four hours later and could not empty my bladder. I couldn’t walk normally and my right eyelid was drooping so much it was practically closed. Almost my entire body was numb. I finally had had enough.
I got dressed, intending to surruptiously drive myself to the hospital. However, when I opened my bedroom door, the three adult children who lived with me were all still awake and sparky at 3 o’clock in the morning. Indeed, two of them had only just come home. Ahh, to be young. When I emerged fully dressed from my bedroom in the middle of the night, their jaws dropped. They dropped even farther when I told them I, who never even acknowledged a cold, was going to the emergency room. They all wanted to come, but the prospect of that scene, with all their different personalities and coping styles, was like something out of the Marx Brothers. I finally agreed to let my oldest daughter come with me. I still drove, an in-denial control freak to the end. Independent, private. How little I was aware that my existence was about to be irretrievably altered. I was driving straight from the world of ignorant bliss to the world of slap-you-in-the-face chronic illness.
At the hospital, no one seemed particularly upset by my symptoms. Indifferently triaged, I sat in the waiting room for over an hour. Knowing the first thing I would be treated to was a catheter, when I was finally called I cheerfully told my daughter to wait for me there. “A cortisone shot, and I’ll be right out!” She looked at me like I was nuts, but she stayed put.
And then, for the only time besides giving birth 28 and 29 years earlier, I became a hospital patient. Off came the clothes, except OF COURSE for my underwear. I may be Episcopalian now, but the Catholic modesty I was raised with is indelible. On went the threadbare gown, worn previously by untold, and probably unwashed, hordes. Ick. I described my symptoms to a bored physician. I was embarrassed that I had had the numbness in my hands for months but had done virtually nothing, so I said it was “a few weeks”. He asked, when did it start? Because I was too stupid to make my answers match my prevarication, I honestly answered May. This was now the last week in August. “MAY! That’s MONTHS!” he exclaimed, as though I had committed murder. “O.K., well its still weeks.” I meekly replied. I told him about the urinary hesitancy (which implies seconds but had been over an hour) and he immediately ordered the dreaded catheter. Goodbye knickers. I tried to get out of it, because I had finally managed to go, but clinically I knew they needed to evaluate any urinary retention. My nurse came in with the sterile kit and introduced himself. He seemed to be nice man and I had no doubt of his competence. But I said something I would not have been capable of a few years earlier: “Can I please have a female nurse?” He was very gracious and accommodating, but definitely looked disappointed, which I found a trifle creepy. Later, when it was time for it to be removed, he popped his head in, snapping on gloves. “Is it ok if I take it out?” My head said “What on EARTH makes you think if I didn’t want you to put it in I would be perfectly fine with you taking it out?!?!?!” But I was forced by years of good breeding to sweetly say, “Would you mind terribly if I had a female nurse again.” Oy vey. He did not look as accommodating this time, but a lovely woman came in and disconnected me. I couldn’t get my bloomers back on fast enough.
Now Mary Kate could come be with me. One of the staff went to get her and my girl walked in with a steaming container of tea that she had gotten for me, unasked. She is truly the perfect child. It was the best thing I had ever tasted, a cup of normalcy. We sat and watched Hurricane Katrina cruelly descend on New Orleans. But my mind was careening. What was wrong with me? Did I have a brain tumor? Did I have Lou Gehrig’s disease? Did I have AIDS from those accidental needle sticks at work years earlier, or careless love with the wrong person? A CT scan was done, blood was taken. The doctor came back. The blood work and CT scan were telling them nothing and, as I still couldn’t walk, or feel, they were admitting me for more testing. “But”, he said blithely, right in front of my dear, pale, loving daughter, “we are probably looking at Multiple Sclerosis.” And he breezed out.
I was stunned, but for all the wrong reasons. I had a brand new job and no sick time. They didn’t know me well enough yet to be aware I NEVER took off sick from work. I couldn’t be admitted! Additionally, because I could not take sick time yet, I would not get paid for any time off and would be losing money every day. On the other hand, I was almost relieved. I could give up trying to pretend I was well and finally get help. The words “Multiple Sclerosis” did not even register. Mary Kate began straightening my sheets and smoothing them over my legs. I looked up at her and she was crying. Taking her in my arms, we held each other and shook.
Next: Testing, testing and more testing. And a steady diet of humiliation.
To be fair, he listened and gave me a seemingly thorough neurological exam, the results of which should have sent me flying to an emergency room. A test for proprioception, outstretched right pinkie to nose with my eyes closed, overshot my nose and landed at my left eye every single time. Over and over again I missed abysmally. Hmm, he said, rather than the totally appropriate, holy shit!
How long have you had a problem with bradycardia, he asked. Never. Well your pulse is 40. FORTY!? He could not get a blood pressure. These alarming signs still did not send me to the hospital. He said he believed it was the vitamins I had begun taking for the leg spasms I had been having that were keeping me up at night (more ignored symptoms). Ok, if he was selling, I could buy that. He adjusted my spine. I went back for four more visits over two weeks. Then I started having trouble walking. That was on a Thursday. I went to see him Friday night, my legs scissoring as I struggled to put one foot in front of the other. He tested the strength in my toes. My left foot and toes offered no resistance. None. Zero. They were floppy and flaccid. He would not adjust me and said he thought it was time for an MRI. It was actually time for an ambulance, but I was in total denial. He looked at me gravely and asked, “What are you most afraid of?” Because I truly believed there was nothing really wrong with me, there could be nothing wrong with me, I laughed and said, “Well, that I have a debilitating neurological disease that will kill me.” He didn’t smile. Uh-oh.
That night I was fascinated by my useless left foot. My leg was now so weak that I couldn’t lift it to cross it over the other when I was sitting in bed. Saturday I spent cooking for our church picnic the next day. I was dragging my leg as I scuttled around my kitchen like Quasimodo. I went to bed that night all ready for the picnic, still insanely believing, hope against hope, that these were some transient aberrations. I woke up four hours later and could not empty my bladder. I couldn’t walk normally and my right eyelid was drooping so much it was practically closed. Almost my entire body was numb. I finally had had enough.
I got dressed, intending to surruptiously drive myself to the hospital. However, when I opened my bedroom door, the three adult children who lived with me were all still awake and sparky at 3 o’clock in the morning. Indeed, two of them had only just come home. Ahh, to be young. When I emerged fully dressed from my bedroom in the middle of the night, their jaws dropped. They dropped even farther when I told them I, who never even acknowledged a cold, was going to the emergency room. They all wanted to come, but the prospect of that scene, with all their different personalities and coping styles, was like something out of the Marx Brothers. I finally agreed to let my oldest daughter come with me. I still drove, an in-denial control freak to the end. Independent, private. How little I was aware that my existence was about to be irretrievably altered. I was driving straight from the world of ignorant bliss to the world of slap-you-in-the-face chronic illness.
At the hospital, no one seemed particularly upset by my symptoms. Indifferently triaged, I sat in the waiting room for over an hour. Knowing the first thing I would be treated to was a catheter, when I was finally called I cheerfully told my daughter to wait for me there. “A cortisone shot, and I’ll be right out!” She looked at me like I was nuts, but she stayed put.
And then, for the only time besides giving birth 28 and 29 years earlier, I became a hospital patient. Off came the clothes, except OF COURSE for my underwear. I may be Episcopalian now, but the Catholic modesty I was raised with is indelible. On went the threadbare gown, worn previously by untold, and probably unwashed, hordes. Ick. I described my symptoms to a bored physician. I was embarrassed that I had had the numbness in my hands for months but had done virtually nothing, so I said it was “a few weeks”. He asked, when did it start? Because I was too stupid to make my answers match my prevarication, I honestly answered May. This was now the last week in August. “MAY! That’s MONTHS!” he exclaimed, as though I had committed murder. “O.K., well its still weeks.” I meekly replied. I told him about the urinary hesitancy (which implies seconds but had been over an hour) and he immediately ordered the dreaded catheter. Goodbye knickers. I tried to get out of it, because I had finally managed to go, but clinically I knew they needed to evaluate any urinary retention. My nurse came in with the sterile kit and introduced himself. He seemed to be nice man and I had no doubt of his competence. But I said something I would not have been capable of a few years earlier: “Can I please have a female nurse?” He was very gracious and accommodating, but definitely looked disappointed, which I found a trifle creepy. Later, when it was time for it to be removed, he popped his head in, snapping on gloves. “Is it ok if I take it out?” My head said “What on EARTH makes you think if I didn’t want you to put it in I would be perfectly fine with you taking it out?!?!?!” But I was forced by years of good breeding to sweetly say, “Would you mind terribly if I had a female nurse again.” Oy vey. He did not look as accommodating this time, but a lovely woman came in and disconnected me. I couldn’t get my bloomers back on fast enough.
Now Mary Kate could come be with me. One of the staff went to get her and my girl walked in with a steaming container of tea that she had gotten for me, unasked. She is truly the perfect child. It was the best thing I had ever tasted, a cup of normalcy. We sat and watched Hurricane Katrina cruelly descend on New Orleans. But my mind was careening. What was wrong with me? Did I have a brain tumor? Did I have Lou Gehrig’s disease? Did I have AIDS from those accidental needle sticks at work years earlier, or careless love with the wrong person? A CT scan was done, blood was taken. The doctor came back. The blood work and CT scan were telling them nothing and, as I still couldn’t walk, or feel, they were admitting me for more testing. “But”, he said blithely, right in front of my dear, pale, loving daughter, “we are probably looking at Multiple Sclerosis.” And he breezed out.
I was stunned, but for all the wrong reasons. I had a brand new job and no sick time. They didn’t know me well enough yet to be aware I NEVER took off sick from work. I couldn’t be admitted! Additionally, because I could not take sick time yet, I would not get paid for any time off and would be losing money every day. On the other hand, I was almost relieved. I could give up trying to pretend I was well and finally get help. The words “Multiple Sclerosis” did not even register. Mary Kate began straightening my sheets and smoothing them over my legs. I looked up at her and she was crying. Taking her in my arms, we held each other and shook.
Next: Testing, testing and more testing. And a steady diet of humiliation.
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