The Cushing's community recently lost Martha. In her honor, please read a post about Martha at Robin's blog. Much love and heartfelt sorrow for her partner Stacey during this difficult time. (((((Stacey)))))
Showing posts with label Cushing's Disease. Show all posts
Showing posts with label Cushing's Disease. Show all posts
Sunday, October 26, 2008
Martha's Story
The Cushing's community recently lost Martha. In her honor, please read a post about Martha at Robin's blog. Much love and heartfelt sorrow for her partner Stacey during this difficult time. (((((Stacey)))))
Tuesday, October 14, 2008
"But I Am Not That Smart"
The new specialist mentioned that during my appointment in August. He was referring to rare diseases or complicated ones, I suppose.
Is that a heartening statement? I implore you; if you wield any power in your life over people that need your services, do not say that to a client. Especially one that will be billed regardless of your capacity for thought. Egads. For goodness sakes, you are billed as a research scientist and scholar.
So, I did manage to make it two months hormone-free and finally went to the lab for some blood tests.
TSH elevated, T4 low ~ secondary hypothyroidism still there
low Estradiol, LH and FSH ~ hypogonadism persists
8am cortisol & ACTH normal ~ woohoo! but without midnight serum & salivary results. I don't want to waste time doing any tests until there is some sort of agreement on what a "valid testing procedure" entails.
fasting insulin level is high ~ 20uU/mL on a range of 0-17
DHEA is low *insert adrenal mumbo jumbo*
RCDW high ~ ?
IPTH is high 80 on a range of 10 to 65, with 45 being a commonly considered high result for people under the age of 60 but a useless result in some senses since the Calcium level is currently pending
Bicarbonate is my only low electrolyte result, which is common for me.
All of that means... absolutely nothing to me! ;) Ok, it probably means something to someone somewhere.
I am not sure which way to go. One of my specialists better start coughing up answers, or handing out more lab slips, or Googling for me, or something...
Once again, it points towards something genetic, endocrine and usually an autosomal dominant trait. Which scares the beejeesus out of me, with two small children.
Is that a heartening statement? I implore you; if you wield any power in your life over people that need your services, do not say that to a client. Especially one that will be billed regardless of your capacity for thought. Egads. For goodness sakes, you are billed as a research scientist and scholar.
So, I did manage to make it two months hormone-free and finally went to the lab for some blood tests.
TSH elevated, T4 low ~ secondary hypothyroidism still there
low Estradiol, LH and FSH ~ hypogonadism persists
8am cortisol & ACTH normal ~ woohoo! but without midnight serum & salivary results. I don't want to waste time doing any tests until there is some sort of agreement on what a "valid testing procedure" entails.
fasting insulin level is high ~ 20uU/mL on a range of 0-17
DHEA is low *insert adrenal mumbo jumbo*
RCDW high ~ ?
IPTH is high 80 on a range of 10 to 65, with 45 being a commonly considered high result for people under the age of 60 but a useless result in some senses since the Calcium level is currently pending
Bicarbonate is my only low electrolyte result, which is common for me.
All of that means... absolutely nothing to me! ;) Ok, it probably means something to someone somewhere.
I am not sure which way to go. One of my specialists better start coughing up answers, or handing out more lab slips, or Googling for me, or something...
Once again, it points towards something genetic, endocrine and usually an autosomal dominant trait. Which scares the beejeesus out of me, with two small children.
Saturday, September 06, 2008
Sherlock
I had some major oral surgery this past Wednesday afternoon. After years, I'll finally admit to it. One of the loveliest and most embarrassing side effects of chronic overexposure to steroids? Tooth loss.
I am a chronic flosser and brusher, so I really can only attribute the demise of one, or *maybe* two, teeth to personal neglect. The loss of 14 others, all molars, I'm not sure who to thank. Osteoporosis? My teeth look fine, then break off at the gumline with no warning. Such beauty. *rolleyes* I cannot have implants due to bone issues, so partials will be ordered when my gums calm down.
Something strange happened after this surgery. It has happened before after my pituitary surgeries, but I explained it off as a sort of post-op *reset* to my system.
Less than 12 hours after the oral surgery, iv sedated then minus 5 teeth, I felt GREAT. Not good, but really great. I dropped 10 pounds of water. My feet stopped hurting. Lots of energy and I'm in a great mood. The only thing I need for pain, if at all, is Aleve (like usual).
WHAT ON EARTH IS THIS FRESH HELL? I thought I knew why this has happened previously, but now I don't have a clue.
I'm not smart enough to put it all together, but it does have me wondering what elective surgery I can sign up for in order to have a *real* scheduled vacation. A guarantee of feeing awesome?! WOW. What can we cut off next? =:)
I wish there was a supah-schmart medic that could piece this together for me. What does IV sedation, which all of these have in common, do for my system?
Is this a vasopressin situation? Side affect of an unknown Aldosterone antagonist? (my aldosterone measures super low)
I am stumped.
Thursday, August 14, 2008
Here we go again
I'm still crying from my appointment this morning. A new specialist on my new insurance.
I think I hate 99% of these specialists. Maybe it is just Cushing's specialists that act like this? Each one of them thinks that they have the proper testing protocol and anything but what they do - exactly as they do it - doesn't count. So, all of my sky high results from the tests I did in April? In the trash.
I've been through this before. And to some extent I understand it. But I am very fragile right now, and I could do without the drama and starting from scratch.
Let me give you an example of what I am saying:
Dr. X in OopaLoopaVille believes that midnight serum blood draws are the "it" thing for diagnosis. But he also thinks that they have to be done with central line placed, an IV line threaded to your heart. He doesn't care how many highs test results you have from going to the ER for midnight blood draws, they don't count to him and those results go right into the trash. Now mind you, I'd have to drive to the hospital for them to draw my midnight blood labs - but out of the central line IV.
Dr. Y in Rainbow City thinks that this central line stuff is a bunch of hooey, and exposes immune-system-compromised people to infection and is just a bunch of crap. He wants to you to go to your local ER at midnight and get your blood drawn with a needle stick. He doesn't think that being stuck with a needle affects your cortisol levels to the extent that you would get a false positive.
NOW TODAY, the Dr. Z of Smitzville says all of the sky high lab results I worked so hard to get, from April, are crap. Throw them in the trash. He thinks that driving to the ER at night throws off your levels and that none of those results are worth the paper they are written on. He also thinks that you cannot take any hormones of any sort while you are testing, because it'll give you false positive results. So, to test with him I need to stop taking thyroid, DHEA, testosterone and estrogen - and I am already not taking the growth hormone. I have to be off all of those for ONE MONTH then he'll admit me to the hospital to run tests. No mention of whether it'll be a central IV line (to the heart), a regular IV line, or just regular blood draws.
Are we slicing some mighty fine hairs here? And does everyone on hormone replacement have some sort of pseudo-cushing's disease?
What I have found consistently over the years is that 99% of these specialists are SO FREAKING COMPETITIVE that they just rejoice at the chance to trash the others' methods.
I hate it, I hate it, I hate it.
Oh, and he DID NOT tell me that 2 pit surgeries were a mistake for me to have done. Has he ever had a three year headache and double vision??? Even if it didn't kill the source, I especially NEEDED that first surgery. The second surgery, well - the tumors showed right on the scan, all of the evidence was in, it seemed like the right thing to do to all parties involved. Mistake? Probably not. I've regained ACTH and have not lost any additional anterior hormones.
I'm so emotionally fragile when it comes to being tossed around and torn down over these minute differences in testing protocol. I broke down and cried like a baby.
I'M SICK. Dammit. Fix me.
I'm going to play along with the rules du jour. I'm marking the calendar for the 1 month free of hormones and we'll go from there.
Prediction:
Mark my words, not only did I have the tumors that have been removed from my pituitary - but my adrenals have their own issues. I've been showing symptoms of Cushing's Disease since the age of TWO. Who grows a pituitary tumor at TWO YEARS OLD, yet not grow to massive proportions by age 36?
I have a friend with two daughters having a form of Carney Complex/Cushing's Disease; it is called iMAD. Both had diseased adrenal glands with pigmentation. The older daughter also has a pituitary tumor. Her doctor is saying that the pituitary tumor doesn't mean anything.
On my side of the equation, I have symptoms of Primary Pigmented Nodular Adrenal Disease. But I had a pituitary tumor, so the PPNAD symptoms don't mean anything.
It's a crazy, freaky world let me tell you.
I am sooo tempted to bypass all of the "cover my ass so I won't get sued" CRAP I have to go through to prove again, and again, and again, and again that I HAVE CUSHING'S DISEASE. Do you think I could pay cash in India or Mexico to have my adrenals out? It'd be worth it at this point. I am so done with this guinea pig stuff.
~~~~
What other disease in the world makes you go through SO MUCH for a cure? I can't think of one. Can you imagine if diabetes was diagnosed the same way?
"It only counts if you eat two apples, standing on your head, then test glucose levels with a finger stick of your left pinky finger."
"No, no, no! You need to not eat any apples for a month, then lay upside down with a fork in your neck and test glucose levels at 1:23pm global-adjusted time."
"Oh, you have it ALL WRONG. Eat thirty pounds of angel food cake, three diet cokes then go to the lab at 8am. They'll jab you with a 10 gauge needle in your RIGHT pinky finger. At a 20 degree angle."
Repeat the above over and over, until all of your toes fall off from gangrene and the new dialysis clinic can fit you in.
I think I hate 99% of these specialists. Maybe it is just Cushing's specialists that act like this? Each one of them thinks that they have the proper testing protocol and anything but what they do - exactly as they do it - doesn't count. So, all of my sky high results from the tests I did in April? In the trash.
I've been through this before. And to some extent I understand it. But I am very fragile right now, and I could do without the drama and starting from scratch.
Let me give you an example of what I am saying:
Dr. X in OopaLoopaVille believes that midnight serum blood draws are the "it" thing for diagnosis. But he also thinks that they have to be done with central line placed, an IV line threaded to your heart. He doesn't care how many highs test results you have from going to the ER for midnight blood draws, they don't count to him and those results go right into the trash. Now mind you, I'd have to drive to the hospital for them to draw my midnight blood labs - but out of the central line IV.
Dr. Y in Rainbow City thinks that this central line stuff is a bunch of hooey, and exposes immune-system-compromised people to infection and is just a bunch of crap. He wants to you to go to your local ER at midnight and get your blood drawn with a needle stick. He doesn't think that being stuck with a needle affects your cortisol levels to the extent that you would get a false positive.
NOW TODAY, the Dr. Z of Smitzville says all of the sky high lab results I worked so hard to get, from April, are crap. Throw them in the trash. He thinks that driving to the ER at night throws off your levels and that none of those results are worth the paper they are written on. He also thinks that you cannot take any hormones of any sort while you are testing, because it'll give you false positive results. So, to test with him I need to stop taking thyroid, DHEA, testosterone and estrogen - and I am already not taking the growth hormone. I have to be off all of those for ONE MONTH then he'll admit me to the hospital to run tests. No mention of whether it'll be a central IV line (to the heart), a regular IV line, or just regular blood draws.
Are we slicing some mighty fine hairs here? And does everyone on hormone replacement have some sort of pseudo-cushing's disease?
What I have found consistently over the years is that 99% of these specialists are SO FREAKING COMPETITIVE that they just rejoice at the chance to trash the others' methods.
I hate it, I hate it, I hate it.
Oh, and he DID NOT tell me that 2 pit surgeries were a mistake for me to have done. Has he ever had a three year headache and double vision??? Even if it didn't kill the source, I especially NEEDED that first surgery. The second surgery, well - the tumors showed right on the scan, all of the evidence was in, it seemed like the right thing to do to all parties involved. Mistake? Probably not. I've regained ACTH and have not lost any additional anterior hormones.
I'm so emotionally fragile when it comes to being tossed around and torn down over these minute differences in testing protocol. I broke down and cried like a baby.
I'M SICK. Dammit. Fix me.
I'm going to play along with the rules du jour. I'm marking the calendar for the 1 month free of hormones and we'll go from there.
Prediction:
Mark my words, not only did I have the tumors that have been removed from my pituitary - but my adrenals have their own issues. I've been showing symptoms of Cushing's Disease since the age of TWO. Who grows a pituitary tumor at TWO YEARS OLD, yet not grow to massive proportions by age 36?
I have a friend with two daughters having a form of Carney Complex/Cushing's Disease; it is called iMAD. Both had diseased adrenal glands with pigmentation. The older daughter also has a pituitary tumor. Her doctor is saying that the pituitary tumor doesn't mean anything.
On my side of the equation, I have symptoms of Primary Pigmented Nodular Adrenal Disease. But I had a pituitary tumor, so the PPNAD symptoms don't mean anything.
It's a crazy, freaky world let me tell you.
I am sooo tempted to bypass all of the "cover my ass so I won't get sued" CRAP I have to go through to prove again, and again, and again, and again that I HAVE CUSHING'S DISEASE. Do you think I could pay cash in India or Mexico to have my adrenals out? It'd be worth it at this point. I am so done with this guinea pig stuff.
~~~~
What other disease in the world makes you go through SO MUCH for a cure? I can't think of one. Can you imagine if diabetes was diagnosed the same way?
"It only counts if you eat two apples, standing on your head, then test glucose levels with a finger stick of your left pinky finger."
"No, no, no! You need to not eat any apples for a month, then lay upside down with a fork in your neck and test glucose levels at 1:23pm global-adjusted time."
"Oh, you have it ALL WRONG. Eat thirty pounds of angel food cake, three diet cokes then go to the lab at 8am. They'll jab you with a 10 gauge needle in your RIGHT pinky finger. At a 20 degree angle."
Repeat the above over and over, until all of your toes fall off from gangrene and the new dialysis clinic can fit you in.
Friday, July 04, 2008
Not dead yet!
A recent anonymous comment asking if I was dead has me stopping by...
No, not dead yet. ;)
I'm at a weird low point right now and don't have much to say to anyone. Yes, the Cushing's is back - err, never left or who the hell knows. I'm not feeling confident about the chances for a forever-cure in my future. I guess that might shut up anyone. ;)
A few months ago a fellow-Cushing's patient passed away. She was my age, has children the same ages as mine, had all of the same surgeries as I have had. She never seemed to recover after her bilateral adrenalectomy, didn't feel well and laid down on the couch after reading her children a bedtime story. She never woke up. :(
The cardiac aspect of Cushing's is terrifying. You putt along for twenty-some years to get a diagnosis and then grind out a slow path getting sliced & diced. Every scheduling takes 3 weeks or more, every blood test, 24 hour urine collection, picc lines, trips to the local ER lab at midnight for bloodwork, chewing on cotton swabs for salivary levels... all tests and procedures to get to the end, to the goal of a successful cure. All of that snail's pace progression is outmatched by the horror the disease wrecks on your body. A snowball of morbid medical decline picking up speed [severe cardiovascular damage, bone loss, muscle wasting, disfigurement, and have I mentioned cardiac?] . While doctor after doctor carefully dots their i's and the never ending tests and waiting for the results, then back to square one. It all tosses in roadblocks that cost days, weeks, month and makes for years of delay. Five abnormal/diagnostic value test values are not enough, and one normal result can outweigh them all in a single bound. You need a chart to keep track of the myriad of results and the algorithm is always changing.
The news of Natalie's death broke my heart. And also the sweetest woman I have ever met; SuziQ, who we lost a few years ago stemming from decades of Cushing's damage.
.......
I'm still convinced that I have PPNAD [primary pigmented adrenal disease] or something similar. Of course the last case scenario cureall for Cushing's, for me at this point, and for PPNAD are one and the same. Bilateral adrenalectomy. Put'em in a jar.
It is too bad my last extension of COBRA insurance ran out in May. I finished testing to prove that the recurrence (or never-cured) remains to be dealt with. *POOF* Endgame. Uninsurable. High risk insurance pool only covers 70k. My pituitary can poop bigger than 70k!
Now I am one of those people. The uninsured. The chronically ill. The unemployed and too apathetic to bother hiring a lawyer to go after my 5+ years off work with Social Security.
Apathy. Yes apathetic, I think that is where I am.
Even if I get to have a BLA, even if we force a cure, even if I end up on every hormone pill/patch/shot or gel in the world. Well, who says I won't lay down to rest and die? :( :( Poor Natalie. Poor Natalie's children and husband.
I suppose if I find a chance to get a shot at it; I'll do it.
But only if they promise not to touch my freaking nose. Egads. If I had known what I know now, post-op pituitary x2, I'd have asked them to put down the specialized endoscope and just cut through over my eyebrow. Or something, anything. Just leave my sinuses out of it, for heaven's sakes. Good grief I don't care about scars anymore. I did appreciate having my impromptu nose job during the last operation ~~~wheee~~~ all deviation is gone and my schnoz is straight as can be. But the misery of sinus complications just goes on and on. Spinal leak, Bacterial infection, scab hunks falling out in chunks out of my nose (from the surgery site), then a flourishing fungal infection just ties it all up like a neat bow on a Xmas present. Ew. Phhhhhhfffft.
I'm managing to get along, in the meantime, while I sit calmly in limbo. I've slimmed down my medications. No growth hormone, I don't know what the precise mechanisms are but I did gain energy but on the downside; 45lb very rapid weight gain and arthritis pain to boot. I can't afford growth hormone shots anyhow, as I am one of those people. The uninsured. The chronically ill. The apathetic. And unemployable. You know.
That's about all there is here. And since I cannot cure myself; despite years of research and medical community involvement -- with the best doctors -- I just feel as though even if I have a say; it is not a contribution. More likely a liability. Could you continue to encourage & guide other people to seek treatment of a disease you cannot cure for your own self? I can't.
Encouraging doctors to learn about this crazy disease and to know it when they see it, or at least retain a high index of suspicion? I always have time for that.
If you sense some silence and want to know the score, just cough or something and I'll check my pulse, m'ky? :)
No, not dead yet. ;)
I'm at a weird low point right now and don't have much to say to anyone. Yes, the Cushing's is back - err, never left or who the hell knows. I'm not feeling confident about the chances for a forever-cure in my future. I guess that might shut up anyone. ;)
A few months ago a fellow-Cushing's patient passed away. She was my age, has children the same ages as mine, had all of the same surgeries as I have had. She never seemed to recover after her bilateral adrenalectomy, didn't feel well and laid down on the couch after reading her children a bedtime story. She never woke up. :(
The cardiac aspect of Cushing's is terrifying. You putt along for twenty-some years to get a diagnosis and then grind out a slow path getting sliced & diced. Every scheduling takes 3 weeks or more, every blood test, 24 hour urine collection, picc lines, trips to the local ER lab at midnight for bloodwork, chewing on cotton swabs for salivary levels... all tests and procedures to get to the end, to the goal of a successful cure. All of that snail's pace progression is outmatched by the horror the disease wrecks on your body. A snowball of morbid medical decline picking up speed [severe cardiovascular damage, bone loss, muscle wasting, disfigurement, and have I mentioned cardiac?] . While doctor after doctor carefully dots their i's and the never ending tests and waiting for the results, then back to square one. It all tosses in roadblocks that cost days, weeks, month and makes for years of delay. Five abnormal/diagnostic value test values are not enough, and one normal result can outweigh them all in a single bound. You need a chart to keep track of the myriad of results and the algorithm is always changing.
The news of Natalie's death broke my heart. And also the sweetest woman I have ever met; SuziQ, who we lost a few years ago stemming from decades of Cushing's damage.
.......
I'm still convinced that I have PPNAD [primary pigmented adrenal disease] or something similar. Of course the last case scenario cureall for Cushing's, for me at this point, and for PPNAD are one and the same. Bilateral adrenalectomy. Put'em in a jar.
It is too bad my last extension of COBRA insurance ran out in May. I finished testing to prove that the recurrence (or never-cured) remains to be dealt with. *POOF* Endgame. Uninsurable. High risk insurance pool only covers 70k. My pituitary can poop bigger than 70k!
Now I am one of those people. The uninsured. The chronically ill. The unemployed and too apathetic to bother hiring a lawyer to go after my 5+ years off work with Social Security.
Apathy. Yes apathetic, I think that is where I am.
Even if I get to have a BLA, even if we force a cure, even if I end up on every hormone pill/patch/shot or gel in the world. Well, who says I won't lay down to rest and die? :( :( Poor Natalie. Poor Natalie's children and husband.
I suppose if I find a chance to get a shot at it; I'll do it.
But only if they promise not to touch my freaking nose. Egads. If I had known what I know now, post-op pituitary x2, I'd have asked them to put down the specialized endoscope and just cut through over my eyebrow. Or something, anything. Just leave my sinuses out of it, for heaven's sakes. Good grief I don't care about scars anymore. I did appreciate having my impromptu nose job during the last operation ~~~wheee~~~ all deviation is gone and my schnoz is straight as can be. But the misery of sinus complications just goes on and on. Spinal leak, Bacterial infection, scab hunks falling out in chunks out of my nose (from the surgery site), then a flourishing fungal infection just ties it all up like a neat bow on a Xmas present. Ew. Phhhhhhfffft.
I'm managing to get along, in the meantime, while I sit calmly in limbo. I've slimmed down my medications. No growth hormone, I don't know what the precise mechanisms are but I did gain energy but on the downside; 45lb very rapid weight gain and arthritis pain to boot. I can't afford growth hormone shots anyhow, as I am one of those people. The uninsured. The chronically ill. The apathetic. And unemployable. You know.
That's about all there is here. And since I cannot cure myself; despite years of research and medical community involvement -- with the best doctors -- I just feel as though even if I have a say; it is not a contribution. More likely a liability. Could you continue to encourage & guide other people to seek treatment of a disease you cannot cure for your own self? I can't.
Encouraging doctors to learn about this crazy disease and to know it when they see it, or at least retain a high index of suspicion? I always have time for that.
If you sense some silence and want to know the score, just cough or something and I'll check my pulse, m'ky? :)
Tuesday, April 08, 2008
Happy National Cushing's Disease Awareness Day
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 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???
Wednesday, May 30, 2007
Six days post-op
morning of day 6, talking to my girls:
I think I have discovered the reason why people go downhill at 7 days post-surgery.
Today friend, and fellow pituitary Cushing's survivor, Robin forewarned me that around 10 days after surgery the big ol' scab that is lurking in my sinuses will fall off. Yeowza! She casually mentioned that it gagged her. Oh, I can't wait! Eww.
It's day 6 and I am out of Percocet. Is it any wonder that other people get worse at day 7? I don't want to go on one of my tangents about pain management, but that is just silly. By the time a Cushing's patient has made it to treatment they've endured plenty of pain; joint, muscular, headache, and unrelenting pain that people can't imagine. Excess cortisol breaks down your connecting tissues, and for some related reason the pain of anything knocking into me or even a normal bump into a wall hurts like you could not fathom. Giving someone 7 days of pain medication and telling them it'll take 2-3 weeks for the surgical site to heal is plain mean, imho. I'm a walking pharmacy, so I have fentanyl and morphine to fall back on but I didn't want to go back to those medications after my cure. I despise morphine, but had to break down and take some tonight. I have a huge scab in my sinus cavity, of course my head hurts like hell. A steamy shower only provided temporary relief.
I can't wait to choke on that scab. ;)
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