I'm back, with good news

To contact us Click HERE
I know I've been gone a while. I won't count off the months and days.

My father-in-law passed away after my last post. Cancer is a terrible thing. It was his second bout with the disease and, sadly, he went undiagnosed until Stage IV the second time around. Chemotherapy gave him some extra time but it didn't seem to be enough. I really miss Bill, and I always will.

On the way home from his funeral ceremony, which was delayed a few weeks for the Christmas holidays, I got the news that my mother was taking a turn for the worse. I flew out and drove straight to her beside getting there just hours before she drifted off into a coma. I never did get to talk to her in any meaningful sense, but that has defined our relationship for 36 years. I think its more difficult to lose a parent you weren't close to sometimes, at least initially. I spent the rest of my trip fighting an adrenal crisis that wouldn't let go.

Meanwhile the surgeon that will be performing my pituitary procedure insisted that I undergo an Inferior Petrosal Sinus Sampling. That's fine, as it assists him when mapping out an approach for surgery. However, arranging for the IPSS was another story. It took from the beginning of January until March 28th to have it scheduled, confirmed and carried out. Then another three weeks for informal results, four weeks for the official ones with a report.

I am happy to say that I do have a date for surgery: May 24th and I do have hope that this Christmas I'll feel better.

I seem to tick off years at Christmas, thinking 'Last year I thought I'd be better by now'. Maybe this is my year.

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

I'm back, with good news

To contact us Click HERE
I know I've been gone a while. I won't count off the months and days.

My father-in-law passed away after my last post. Cancer is a terrible thing. It was his second bout with the disease and, sadly, he went undiagnosed until Stage IV the second time around. Chemotherapy gave him some extra time but it didn't seem to be enough. I really miss Bill, and I always will.

On the way home from his funeral ceremony, which was delayed a few weeks for the Christmas holidays, I got the news that my mother was taking a turn for the worse. I flew out and drove straight to her beside getting there just hours before she drifted off into a coma. I never did get to talk to her in any meaningful sense, but that has defined our relationship for 36 years. I think its more difficult to lose a parent you weren't close to sometimes, at least initially. I spent the rest of my trip fighting an adrenal crisis that wouldn't let go.

Meanwhile the surgeon that will be performing my pituitary procedure insisted that I undergo an Inferior Petrosal Sinus Sampling. That's fine, as it assists him when mapping out an approach for surgery. However, arranging for the IPSS was another story. It took from the beginning of January until March 28th to have it scheduled, confirmed and carried out. Then another three weeks for informal results, four weeks for the official ones with a report.

I am happy to say that I do have a date for surgery: May 24th and I do have hope that this Christmas I'll feel better.

I seem to tick off years at Christmas, thinking 'Last year I thought I'd be better by now'. Maybe this is my year.

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

The New York Review of Books: Someone Else's Children

To contact us Click HERE
The Burns Archive is pleased to announce our exhibition Reed Bontecou: Masterpieces of Civil War Portraiture and accompanying publication Shooting Soldiers have been covered by The New York Review of Books:



Someone Else’s Children

Christopher Benfey
November 28, 2011
My wife and I have two sons, aged eighteen and twenty-two. Both have registered for the Selective Service, as the law requires. (“Our objective is to register you,” the official letter reminded them, “not to have you prosecuted.”) We don’t have a clear idea of Tommy’s or Nicholas’s views regarding military service; we hope that circumstances won’t force us to find out. None of us knows any men or women currently serving in Iraq or Afghanistan. They are someone else’s children. We watch news reports of wounded veterans learning to walk with prosthetic limbs. Recent stories about body parts mislaid at the military mortuary at Dover Air Force Base fill us with outrage. Still, for many of us, it is a general, not an individualized outrage.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Charles H. Greenfield (left), wounded April 2, 1865 at Petersberg, VA; A. Smith (center), 
wounded April 16, 1864 at Southside Railroad; P. Ferris (right), gunshot wound, left leg.

During the Civil War, in contrast, the mangling of young bodies was evident to all. Three million volunteers armed with advanced rifles, and firing at one another at point-blank range, fought on battlefields often not far from their own homes. American writers, many of whom had children in the war, were not insulated from the carnage. Fred Stowe was standing in the graveyard on Cemetery Ridge, above Gettysburg, when a live shell exploded near his ear, opening a wound that never healed. Charles Longfellow sought distraction from the trauma of the war in Yokohama, where he had a giant carp tattooed across his back, around the scars of two bullet holes. Emily Dickinson chose as her literary advisor a Union colonel suffering from PTSD: “We can find no scar,” she wrote in a famous poem, “But internal difference— / Where the Meanings, are.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
“A Morning’s Work” R. B. Bontecou’s label for his iconic image of wartime labors, 1865.

Louisa May Alcott and Walt Whitman served as nurses and eyewitness reporters in the hideous Union hospitals in Washington, D. C. Alcott contracted typhoid in the septic wards and wrote Little Women, about the daughters of a father wounded in the war, while treating herself with mercury. Whitman ministered to the needs of wounded soldiers while also keeping a careful visual record of everything he saw, “this other freight of helpless worn and wounded youth,” as he wrote to Emerson. “Doctors sawed arms & legs off from morning till night,” he reported in his journal. He was dismayed to see “a heap of feet, arms, legs, etc., under a tree in front of a hospital.” As he moved from bed to bed in the overcrowded wards, he was shocked by the youth of the victims. “Charles Miller, bed 19, company D, 53rd Pennsylvania, is only sixteen years of age, very bright, courageous boy, left leg amputated below the knee.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Pvt. John Parmenter, before being operated on for gangrene. Wounded at Amelia Springs, VA, April 3, 1865

The remarkable medical photographs of the Civil War surgeon-photographer Reed Bontecou—now published in their entirety for the first time and recently shown at The Robert Anderson gallery in New York—bring us closer still. Bontecou, from Troy, New York, was a classifier of seashells and an ornithologist who had traveled in the Amazon before the war collecting specimens. A pioneer in surgical procedures known for the dexterity and speed of his operations, he was also a photographer of genius. His iconic image, “A Morning’s Work,” shows a pile of amputated legs he himself had sawed off earlier that day. Bontecou’s albums served many ends, most obviously instruction, with before-and-after shots, in the identification and treatment of conditions like gangrene and bullets lodged in bone. But they also aided in the later identification of veterans for disbursement of disability and pension funds. Bontecou was apparently an engaging and capable administrator of army hospitals who was once threatened with disciplinary action for inviting a recovering Confederate officer to his home for Thanksgiving dinner.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Pvt. John Parmenter lying unconscious from anesthesia on operating table with his severed foot, 1865.

Most poignant and painful is Bontecou’s artistic ability to capture the terror of his patients, what the editor and collector of medical photographs Stanley Burns, M.D., calls “individual bereavement.” Pvt. John Parmenter, unbearably young, lies prone on an army cot with his beautiful and vulnerable face turned towards us and his gangrenous foot propped up on a cushion. Then, in another photograph, we see him lying deathly pale and unconscious; a surgeon with his hand on one of Parmenter’s bent knees looks down thoughtfully at the severed foot. The picture has some of the bleak, geometrical power of Jacques-Louis David’s Death of Marat.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Robert Fryer, Private, Age 18. Gunshot wound, right hand.
Wounded March 25, 1865, at Battle of Hatcher’s Run.

In another arresting image, Robert Fryer, eighteen years old and wearing his cap and uniform, all gold buttons carefully buttoned, holds his hand to his chest as though playfully mimicking a handgun. His features are deadpan. At first, we assume his hand is partially hidden in his jacket. But no, it’s an illusion, presumably deliberate on the part of the photographer. Fryer’s middle, ring, and little fingers are amputated. According to Bontecou’s notes, “Patient has good use of forefinger and thumb.” Perhaps he watched young Robert Fryer buttoning his coat.
The photographs are a bitter reminder of the hideous race between better medical response and ever more devastating weaponry. If, as Burns notes, the improvised explosive device (IED) has changed the way war is fought and the wounded treated today, the novelty of the Crimean War and the Civil War was the 58 caliber Minie Ball, named for its inventor, Claude-Etienne Minié. This was a war in which 94% of Union wounds were caused by bullets. The Minie Ball, Burns remarks, “shattered and fractured bone easily and commonly carried clothing and other debris with it into the wound, making infection a constant companion in almost every case.” Bontecou’s images “documented the battle against gunshot wounds,” at a time when battle armor was minimal or absent and two years before the discovery of the principles of antiseptic surgery in 1867. Burns adds grimly, “Many of the men we see here are going to die.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Andsell H. Beam, Age 24. Gunshot wound to head.
Wounded April 6, 1865, Battle Of Farmville, VA.

There is another race on display in these photographs, between the sheer horror of the army hospital and our ability to find words and images adequate to the horror. “The real war,” Whitman wrote in Specimen Days, “will never get in the books.” The simple identification boards that many of Bontecou’s patients hold in their hands, with their name and company inscribed in white chalk, carry their own dire and individualized lyricism, as though to say, in Whitman’s resonant words: “I am the man, I suffered, I was there.” Andsell H. Beam, shot in the skull on April 6th, 1865, bows over his identification board as though in prayer, or in simple disbelief in his unfathomable fate. “Now that I have lived for 8 or 9 days amid such scenes as the camps furnish,” Whitman wrote his mother, “… really nothing we call trouble seems worth talking about.”
Shooting Soldiers: Civil War Medical Photography By R.B. Bontecou by Dr. Stanley M. Burns has recently been published.

I'm back, with good news

To contact us Click HERE
I know I've been gone a while. I won't count off the months and days.

My father-in-law passed away after my last post. Cancer is a terrible thing. It was his second bout with the disease and, sadly, he went undiagnosed until Stage IV the second time around. Chemotherapy gave him some extra time but it didn't seem to be enough. I really miss Bill, and I always will.

On the way home from his funeral ceremony, which was delayed a few weeks for the Christmas holidays, I got the news that my mother was taking a turn for the worse. I flew out and drove straight to her beside getting there just hours before she drifted off into a coma. I never did get to talk to her in any meaningful sense, but that has defined our relationship for 36 years. I think its more difficult to lose a parent you weren't close to sometimes, at least initially. I spent the rest of my trip fighting an adrenal crisis that wouldn't let go.

Meanwhile the surgeon that will be performing my pituitary procedure insisted that I undergo an Inferior Petrosal Sinus Sampling. That's fine, as it assists him when mapping out an approach for surgery. However, arranging for the IPSS was another story. It took from the beginning of January until March 28th to have it scheduled, confirmed and carried out. Then another three weeks for informal results, four weeks for the official ones with a report.

I am happy to say that I do have a date for surgery: May 24th and I do have hope that this Christmas I'll feel better.

I seem to tick off years at Christmas, thinking 'Last year I thought I'd be better by now'. Maybe this is my year.

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

The New York Review of Books: Someone Else's Children

To contact us Click HERE
The Burns Archive is pleased to announce our exhibition Reed Bontecou: Masterpieces of Civil War Portraiture and accompanying publication Shooting Soldiers have been covered by The New York Review of Books:



Someone Else’s Children

Christopher Benfey
November 28, 2011
My wife and I have two sons, aged eighteen and twenty-two. Both have registered for the Selective Service, as the law requires. (“Our objective is to register you,” the official letter reminded them, “not to have you prosecuted.”) We don’t have a clear idea of Tommy’s or Nicholas’s views regarding military service; we hope that circumstances won’t force us to find out. None of us knows any men or women currently serving in Iraq or Afghanistan. They are someone else’s children. We watch news reports of wounded veterans learning to walk with prosthetic limbs. Recent stories about body parts mislaid at the military mortuary at Dover Air Force Base fill us with outrage. Still, for many of us, it is a general, not an individualized outrage.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Charles H. Greenfield (left), wounded April 2, 1865 at Petersberg, VA; A. Smith (center), 
wounded April 16, 1864 at Southside Railroad; P. Ferris (right), gunshot wound, left leg.

During the Civil War, in contrast, the mangling of young bodies was evident to all. Three million volunteers armed with advanced rifles, and firing at one another at point-blank range, fought on battlefields often not far from their own homes. American writers, many of whom had children in the war, were not insulated from the carnage. Fred Stowe was standing in the graveyard on Cemetery Ridge, above Gettysburg, when a live shell exploded near his ear, opening a wound that never healed. Charles Longfellow sought distraction from the trauma of the war in Yokohama, where he had a giant carp tattooed across his back, around the scars of two bullet holes. Emily Dickinson chose as her literary advisor a Union colonel suffering from PTSD: “We can find no scar,” she wrote in a famous poem, “But internal difference— / Where the Meanings, are.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
“A Morning’s Work” R. B. Bontecou’s label for his iconic image of wartime labors, 1865.

Louisa May Alcott and Walt Whitman served as nurses and eyewitness reporters in the hideous Union hospitals in Washington, D. C. Alcott contracted typhoid in the septic wards and wrote Little Women, about the daughters of a father wounded in the war, while treating herself with mercury. Whitman ministered to the needs of wounded soldiers while also keeping a careful visual record of everything he saw, “this other freight of helpless worn and wounded youth,” as he wrote to Emerson. “Doctors sawed arms & legs off from morning till night,” he reported in his journal. He was dismayed to see “a heap of feet, arms, legs, etc., under a tree in front of a hospital.” As he moved from bed to bed in the overcrowded wards, he was shocked by the youth of the victims. “Charles Miller, bed 19, company D, 53rd Pennsylvania, is only sixteen years of age, very bright, courageous boy, left leg amputated below the knee.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Pvt. John Parmenter, before being operated on for gangrene. Wounded at Amelia Springs, VA, April 3, 1865

The remarkable medical photographs of the Civil War surgeon-photographer Reed Bontecou—now published in their entirety for the first time and recently shown at The Robert Anderson gallery in New York—bring us closer still. Bontecou, from Troy, New York, was a classifier of seashells and an ornithologist who had traveled in the Amazon before the war collecting specimens. A pioneer in surgical procedures known for the dexterity and speed of his operations, he was also a photographer of genius. His iconic image, “A Morning’s Work,” shows a pile of amputated legs he himself had sawed off earlier that day. Bontecou’s albums served many ends, most obviously instruction, with before-and-after shots, in the identification and treatment of conditions like gangrene and bullets lodged in bone. But they also aided in the later identification of veterans for disbursement of disability and pension funds. Bontecou was apparently an engaging and capable administrator of army hospitals who was once threatened with disciplinary action for inviting a recovering Confederate officer to his home for Thanksgiving dinner.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Pvt. John Parmenter lying unconscious from anesthesia on operating table with his severed foot, 1865.

Most poignant and painful is Bontecou’s artistic ability to capture the terror of his patients, what the editor and collector of medical photographs Stanley Burns, M.D., calls “individual bereavement.” Pvt. John Parmenter, unbearably young, lies prone on an army cot with his beautiful and vulnerable face turned towards us and his gangrenous foot propped up on a cushion. Then, in another photograph, we see him lying deathly pale and unconscious; a surgeon with his hand on one of Parmenter’s bent knees looks down thoughtfully at the severed foot. The picture has some of the bleak, geometrical power of Jacques-Louis David’s Death of Marat.

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Robert Fryer, Private, Age 18. Gunshot wound, right hand.
Wounded March 25, 1865, at Battle of Hatcher’s Run.

In another arresting image, Robert Fryer, eighteen years old and wearing his cap and uniform, all gold buttons carefully buttoned, holds his hand to his chest as though playfully mimicking a handgun. His features are deadpan. At first, we assume his hand is partially hidden in his jacket. But no, it’s an illusion, presumably deliberate on the part of the photographer. Fryer’s middle, ring, and little fingers are amputated. According to Bontecou’s notes, “Patient has good use of forefinger and thumb.” Perhaps he watched young Robert Fryer buttoning his coat.
The photographs are a bitter reminder of the hideous race between better medical response and ever more devastating weaponry. If, as Burns notes, the improvised explosive device (IED) has changed the way war is fought and the wounded treated today, the novelty of the Crimean War and the Civil War was the 58 caliber Minie Ball, named for its inventor, Claude-Etienne Minié. This was a war in which 94% of Union wounds were caused by bullets. The Minie Ball, Burns remarks, “shattered and fractured bone easily and commonly carried clothing and other debris with it into the wound, making infection a constant companion in almost every case.” Bontecou’s images “documented the battle against gunshot wounds,” at a time when battle armor was minimal or absent and two years before the discovery of the principles of antiseptic surgery in 1867. Burns adds grimly, “Many of the men we see here are going to die.”

R.B. Bontencou, Courtesey of Stanley B. Burns, MD
Andsell H. Beam, Age 24. Gunshot wound to head.
Wounded April 6, 1865, Battle Of Farmville, VA.

There is another race on display in these photographs, between the sheer horror of the army hospital and our ability to find words and images adequate to the horror. “The real war,” Whitman wrote in Specimen Days, “will never get in the books.” The simple identification boards that many of Bontecou’s patients hold in their hands, with their name and company inscribed in white chalk, carry their own dire and individualized lyricism, as though to say, in Whitman’s resonant words: “I am the man, I suffered, I was there.” Andsell H. Beam, shot in the skull on April 6th, 1865, bows over his identification board as though in prayer, or in simple disbelief in his unfathomable fate. “Now that I have lived for 8 or 9 days amid such scenes as the camps furnish,” Whitman wrote his mother, “… really nothing we call trouble seems worth talking about.”
Shooting Soldiers: Civil War Medical Photography By R.B. Bontecou by Dr. Stanley M. Burns has recently been published.

I'm back, with good news

To contact us Click HERE
I know I've been gone a while. I won't count off the months and days.

My father-in-law passed away after my last post. Cancer is a terrible thing. It was his second bout with the disease and, sadly, he went undiagnosed until Stage IV the second time around. Chemotherapy gave him some extra time but it didn't seem to be enough. I really miss Bill, and I always will.

On the way home from his funeral ceremony, which was delayed a few weeks for the Christmas holidays, I got the news that my mother was taking a turn for the worse. I flew out and drove straight to her beside getting there just hours before she drifted off into a coma. I never did get to talk to her in any meaningful sense, but that has defined our relationship for 36 years. I think its more difficult to lose a parent you weren't close to sometimes, at least initially. I spent the rest of my trip fighting an adrenal crisis that wouldn't let go.

Meanwhile the surgeon that will be performing my pituitary procedure insisted that I undergo an Inferior Petrosal Sinus Sampling. That's fine, as it assists him when mapping out an approach for surgery. However, arranging for the IPSS was another story. It took from the beginning of January until March 28th to have it scheduled, confirmed and carried out. Then another three weeks for informal results, four weeks for the official ones with a report.

I am happy to say that I do have a date for surgery: May 24th and I do have hope that this Christmas I'll feel better.

I seem to tick off years at Christmas, thinking 'Last year I thought I'd be better by now'. Maybe this is my year.

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Happy National Cushing's Disease Awareness Day

To contact us Click HERE
Today is National Cushing's Awareness Day.

I asked a few local papers (ok, is LA considered "local"? ) to do an article about Cushing's. Long story short, only one Cushing's article in the entire USA, that I can find.

Regardless, in doing my search I found an article about a new veterinarian in-house lab machine that will do endocrinology tests while the patients wait.

MEANWHILE, I had my post-op gallon of blood drawn on Saturday. It is Tuesday and I am checking my online fax account for the results umpteen times a day.

Allow me to repeat this, because I do not have enough swear words in my vocabulary:
VETERINARIAN IN-HOUSE LAB EQUIPMENT - PRODUCING RESULTS FOR ANIMALS AND THEIR OWNERS WHILE THEY WAIT

I give up. I give up. I give up.

I'm going to schedule an appointment with a veterinarian. Canine cushing's disease: They get all the press, no one doubts them and now they can get their results in the office. WTF???

Damn you, Cushing's Disease

To contact us Click HERE
How to disappoint all of your friends, relatives and two young children: Spend a month recuperating from pituitary surgery in June - and not have your remission stick. In September I realized that the Cushing's had returned, if it ever left, and I'm just now ready to admit to it.

Thankfully the road is paved already and my specialist is recommending a repeat surgery. Tomorrow I go in for a pituitary MRI and with any luck we can find the source. The abdominal MRI from two weeks ago shows normal adrenal glands. In a twisted way I was hoping that my adrenals were the culprit, even though it goes against all likelihood. Removing the adrenal glands would almost certainly put an end to the Cushing's misery. I'd take Addison's back with a warm heart, since my weight has ballooned beyond all recognition. (I avoid mirrors.) They discovered a cyst on my spleen and liver during the abdominal MRI. No one has addressed those findings, so I don't know what to make of it. A quick Google tells me that it is rare, ha - who knew?, and LORD HELP ME, I now know what 'non-parasitic' means. *la la la la la la* (fingers in ears)

I have some more blood testing to do at midnight, which runs a close second to my most despised form of testing torture, and the MRI tomorrow. As far as symptoms go, weight gain - cystic 'steroid' acne - flank pain - and very recently a deterioration of the vision in my left eye (again). The double vision is slight and I only get migraines once a week or so. My bout with constant 24 hour a day headache & migraine has ruined my ability to describe pain. I cannot fathom calling the first surgery a 'failure', since it single-handedly took away the constant headache.

I'm rambling and it is late.... I'll be back with MRI results soon.

I've had it. Up to my neck, err - brain.

To contact us Click HERE
My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

I'm a big weaner

To contact us Click HERE
I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*