I was reflecting today and realized that I avoid telling people I'm sick because I want to avoid telling people that I have Cushing's. It isn't that I am secretive, that I'm embarrassed, that it's too complex to explain (though it IS complex), or that I don't want to educate people. You know what it is?
I HATE people assuming I'm just using that as an excuse to be fat and lazy.
I don't have the physical or emotional energy to deal with that! So, my 60+ lb gain in one year took place in high school. I've gone roughly 16 years without making excuses for my weight, why would I now? And I DO NOT live the life of a lazy person, even now. I cook from scratch when I have the energy (used to do it all from scratch, all the time), I keep goats and chickens, I help with our remodel (doing it ourselves), I homeschool 6 kids (so they're home making messes and needing my attention all day every day), heck, I HAVE 6 kids! LOL Most people with normal health and energy levels don't do those things. If I wanted a lazy life, I sure messed things up.
Rant over, for now...
Sunday, May 5, 2013
Saturday, May 4, 2013
I'm back! Mwa ha ha ha... (an update, what helps and what doesn't)
I had planned originally that I would journal my Cushing's experiences here, for other Cushie's to see and gain understanding and perspective from...this is a confusing, rare, and isolating illness. Obviously I'm not doing so well at that since I haven't posted in a long time. That is partially because of backlash I received and thus a need to be off the radar, and partially because I needed to step back from focusing on my illness. Though it still affects everything in my life on a daily basis, I can't let it be my focus. The backlash has simmered down for the time being, and I'm in a better place overall right now. So, here's an update for the last year (roughly).
I don't know that I ever posted that Sheehan's appears off the mark, many of my hormone levels seemed to be decent. As Dr. F expected, I did have 3 Cortisol tests come back high in two areas (UFC's and 8am cortisols, my salivaries were normal), and need something like 6 for an official diagnosis of Cushing's. With this disease, unless you're florid (meaning pumping high cortisol all the time), you can spend months and years in the testing phase because you get more negatives than positives. Though unlike other illnesses, a negative doesn't overrule a positive, each positive test counts, you simply accumulate them till you've "proven" you have the illness. Then it's on to the IPSS (like a cardiac catheter for your brain, threaded through your femoral artery) and other testing to define what/where it is coming from (ie, where's the tumor), and then on to what is likely brain surgery. I cannot afford (financially or logistically) the invasive and risky testing, surgery and recovery at this time.
This particular surgery (going through the nasal passages, removing part of the skull base, then removing the pituitary adenoma) only has a roughly 40-50% success rate. If it is successful, the recovery is likely to require 1-2 years of hormone replacement, testing, and severe pain (the cortisol masks the pain from bone density loss, muscle atrophy, etc, and when the cortisol goes away, the pain does not!). It also has a high chance of causing pituitary damage, which would likely require life-long hormone replacement, often life-threatening if untreated. Cushing's can and often does recur. For those people, they either go in for a second brain surgery, have both adrenal glands removed (opting for life-threatening addisons disease that can be controlled through medication, over life-threatening Cushing's Disease that cannot be controlled), or have gamma knife radiation (specific parameters have to be met, so not too many people seem to choose or even have this option). So, it is rather risky, it is expensive, it is only a *maybe* cure, and it has a super-long recovery time. I have 6 young kids at home and at this point it just isn't an option. Maybe at some point, but not now...
I'm still just as sick as I was last Summer, as this week's "Cushing's high" reminded me, which for those who don't know means tons of symptoms, emotional rollercoasters, and worsened fatigue (I'm already quite fatigued, so that's *great* fun right there). I have had symptoms coming and going, good days and bad days, but this last week was the most obvious up/down I've had in a long time. 2.5lb weight gain each day for no reason (no, it isn't anywhere near my period, and my diet/fluid intake didn't change), horrendous acne out the whazoo (also at the wrong time of the month so let's just forget that option), my fingers were noticeably swollen upon waking for days, flank pain on my right side, irritability, exhaustion, temperature intolerance, etc. Then one day it just switched directions, again with no obvious changes, and I lost 2.5lbs a day till I'd returned back to my starting weight, the swelling was gone, the acne is clearing, the flank pain is gone, my temperature regulation is better, my energy is back up a bit, and my emotions are more normalized again. What a roller coaster ride! It took a while to notice what was happening, and in fact I didn't realize I felt better until the missionaries were here for dinner and asked me how I was feeling. Huh? I was feeling better AND I'd been cleaning and cooking since I milked goats in the morning without much of a break. I WAS better! I was also exhausted, but that's normal these days.
Moving beyond this week's interesting happenings, I've been trying a bunch of natural healing diets and treatments to see if anything will help. Dr. F said my testing was indicative of Pituitary Cushing's Disease, but the MRI was inconclusive so there is still a slight chance that my Cushing's could be Cushing's Syndrome...some systemic health issue (usually something producing systemic inflammation/illness) and that a natural methodology might work. I can feel the truthfulness behind a great deal of the natural healing methodologies, but whether they will work with an illness such as mine, or even with this illnesses' cause. For instance, even Gerson Therapy doesn't believe their therapy will work on a benign, small tumor. So if it is in fact a pituitary adenoma, these things may help but may not cure. Experience has shown that some even hurt because of all the effects Cushing's has on various body systems (such as digestion, blood sugar regulation, energy, etc) along with my low aldosterone levels. I've tried these things hoping, but keeping my perspective realistic.
I don't know that I ever posted that Sheehan's appears off the mark, many of my hormone levels seemed to be decent. As Dr. F expected, I did have 3 Cortisol tests come back high in two areas (UFC's and 8am cortisols, my salivaries were normal), and need something like 6 for an official diagnosis of Cushing's. With this disease, unless you're florid (meaning pumping high cortisol all the time), you can spend months and years in the testing phase because you get more negatives than positives. Though unlike other illnesses, a negative doesn't overrule a positive, each positive test counts, you simply accumulate them till you've "proven" you have the illness. Then it's on to the IPSS (like a cardiac catheter for your brain, threaded through your femoral artery) and other testing to define what/where it is coming from (ie, where's the tumor), and then on to what is likely brain surgery. I cannot afford (financially or logistically) the invasive and risky testing, surgery and recovery at this time.
This particular surgery (going through the nasal passages, removing part of the skull base, then removing the pituitary adenoma) only has a roughly 40-50% success rate. If it is successful, the recovery is likely to require 1-2 years of hormone replacement, testing, and severe pain (the cortisol masks the pain from bone density loss, muscle atrophy, etc, and when the cortisol goes away, the pain does not!). It also has a high chance of causing pituitary damage, which would likely require life-long hormone replacement, often life-threatening if untreated. Cushing's can and often does recur. For those people, they either go in for a second brain surgery, have both adrenal glands removed (opting for life-threatening addisons disease that can be controlled through medication, over life-threatening Cushing's Disease that cannot be controlled), or have gamma knife radiation (specific parameters have to be met, so not too many people seem to choose or even have this option). So, it is rather risky, it is expensive, it is only a *maybe* cure, and it has a super-long recovery time. I have 6 young kids at home and at this point it just isn't an option. Maybe at some point, but not now...
I'm still just as sick as I was last Summer, as this week's "Cushing's high" reminded me, which for those who don't know means tons of symptoms, emotional rollercoasters, and worsened fatigue (I'm already quite fatigued, so that's *great* fun right there). I have had symptoms coming and going, good days and bad days, but this last week was the most obvious up/down I've had in a long time. 2.5lb weight gain each day for no reason (no, it isn't anywhere near my period, and my diet/fluid intake didn't change), horrendous acne out the whazoo (also at the wrong time of the month so let's just forget that option), my fingers were noticeably swollen upon waking for days, flank pain on my right side, irritability, exhaustion, temperature intolerance, etc. Then one day it just switched directions, again with no obvious changes, and I lost 2.5lbs a day till I'd returned back to my starting weight, the swelling was gone, the acne is clearing, the flank pain is gone, my temperature regulation is better, my energy is back up a bit, and my emotions are more normalized again. What a roller coaster ride! It took a while to notice what was happening, and in fact I didn't realize I felt better until the missionaries were here for dinner and asked me how I was feeling. Huh? I was feeling better AND I'd been cleaning and cooking since I milked goats in the morning without much of a break. I WAS better! I was also exhausted, but that's normal these days.
Moving beyond this week's interesting happenings, I've been trying a bunch of natural healing diets and treatments to see if anything will help. Dr. F said my testing was indicative of Pituitary Cushing's Disease, but the MRI was inconclusive so there is still a slight chance that my Cushing's could be Cushing's Syndrome...some systemic health issue (usually something producing systemic inflammation/illness) and that a natural methodology might work. I can feel the truthfulness behind a great deal of the natural healing methodologies, but whether they will work with an illness such as mine, or even with this illnesses' cause. For instance, even Gerson Therapy doesn't believe their therapy will work on a benign, small tumor. So if it is in fact a pituitary adenoma, these things may help but may not cure. Experience has shown that some even hurt because of all the effects Cushing's has on various body systems (such as digestion, blood sugar regulation, energy, etc) along with my low aldosterone levels. I've tried these things hoping, but keeping my perspective realistic.
Wednesday, June 13, 2012
Kid Pictures -June 2012
Britton mowed the lawn at church on his day off last week, so we drove through McD's on the way, had a picnic and let the kids run while he worked. It was a gorgeous day so the pictures turned out well. (click on the pictures for a slideshow that allows you to enlarge them)
Lara, almost 8
Millie, 2 months
Emma, 9
Hyrum, 3
Ian, almost 5
Elias wouldn't come close or stand still for a photo, but I was able to catch him smiling.
Millie awake (from another time/day) with a smile. ;)
Millicent just before her baby blessing on Easter Sunday in her beautiful dress from Grandma.
When kids whine "I want..." to Grandma she frequently says "I want to see black bears!" in response. The kids tell me sometimes she says "brown bears" instead. So when I asked them what we should give Grandma for her birthday, Lara came up with the bear idea. Mine (or Millie's?) at the top left, Lara's top right (those wings are "hairs"), Ian's center left, Hyrum's center right, Emma's bottom left, and Elias' bottom right.
Playhouse
Our friends gave us a playhouse that was on their property, free for the moving...many had even been willing to pay for it previously but after seeing it, weren't up for the task of moving it. My brother just happened to be in town, and we have a big flat-bed truck, so we wrangled my brotthers into helping us pick it up on Saturday.
It took 4 men to get it on the truck and only 2 to get it off and set up. Whoever built it was serious about their play houses! The floor is 6' x 8' with maybe 4' sidewalls.
The goat kid fencing had to be moved, and Britt attached the swingset to the right side of the building (so it wouldn't be over the garden on the left). The swings are way too high, but the kids had a bblast on them yesterday anyway. They love the fireman pole out the back door...not sure if I do though!
It took 4 men to get it on the truck and only 2 to get it off and set up. Whoever built it was serious about their play houses! The floor is 6' x 8' with maybe 4' sidewalls.
Friday, May 25, 2012
Cushings Disease?
This page is under construction, more information will be added, rearranged, consolidated, and edited as I have the time to do so...
Uncontrolled Cushing’s syndrome is among the most morbid and life-threatening diseases.
Daniel M. Prevedello, MD, Department of Neurosurgery at the University of Pittsburgh School of Medicine and with UPMC Presbyterian. http://brainsurgery.upmc.com/_pdf/Review-of-Endocrin-Cushings.pdf
One of the health problems I'm being tested for is called Cushing's Disease. Cushings Disease is part of the greater Cushing's Syndrome, which is usually caused by taking steroid medications and afflicts roughly 10-15/million. I don't take any form of steroid, but my endocrinologist felt that I had enough signs and symptoms that we needed to rule it our. Cushings Disease is usually caused by a benign tumor on your pituitary that increases your body's natural steroid production and it occurs in roughly 1-2/million. Three of the tests for this, a 24 hour Urinary Free Cortisol (UFC) and 2 8am serum free cortisols, have come back high and are indicative of the over-production of cortisol Cushings causes. I have 2 more 24 hr UFC's pending and one of 3 salivary cortisols still needing to be completed (tonight!) before I send those back. None of them appear to be crazy high, but they are out of range and atleast "agreeing" with eachother, so if more of these tests come back high I will likely be diagnosed with Cushing's Disease.
What is Cushing's Disease?
However, too much cortisol in the body can lead to such problems as:
- Diabetes
- Obesity
- Depression
- Cognitive dysfunction
- Cushingoid appearance
- Skin changes
- Severe fatigue
- Weak muscles
- First, a part of the brain called the hypothalamus sends corticotropin-releasing hormone (CRH) to the pituitary gland, which is located at the base of the brain.
- The pituitary gland then secretes another hormone called adrenocorticotropin hormone (ACTH).
- ACTH stimulates the adrenal glands, which are located on top of the kidneys, to release cortisol into the bloodstream.
- When there is an adequate amount of cortisol in the blood, less CRH and ACTH are released. This process ensures that the adrenal glands release just the right amount of cortisol to meet the body's needs.
Classifying Cushing's syndrome
There are two types of Cushing's syndrome.The first type, endogenous Cushing's, occurs when tumors in the body cause the production of high levels of cortisol. These tumors are typically classified based on their location in the body:
- Cushing's Disease. Caused by tumors in the pituitary gland, Cushing's disease accounts for approximately 70% of all Cushing's syndrome cases.
- Ectopic Cushing's. Ectopic Cushing's is caused by tumors outside of the pituitary gland. These tumors can be either benign or malignant.
- Adrenal Cushing's. Adrenal Cushing's is caused by tumors or abnormalities in the adrenal glands. These tumors can be either benign or malignant.
What are the signs and symptoms?
Although essential to mammalian life, cortisol at supraphysiologic doses provokes symptoms and signs such as decreased libido (100%), weight gain (90%), moon facies (88%), hypertension (85%), glucose intolerance, plethoric facies (80%), reddish striae (65%), hirsutism (65%), among others. Growth retardation is frequently seen in children. On routine screening, Cushing’s syndrome is found in 2% to 5% of patients with poorly controlled type 2 diabetes.
Drawing is reproduced from Mayo Clinic Family Health Book, 2nd Edition, 1996
Below are pictures from my photo album showing what would be my before/after (in a max of 1.5 year span) if I do indeed have this disease:
Before, age 13
Notice my super-thick hair.
Before, Age 14.5
After, age 15-16
After, age 17
This was about a year ago. I don't seem to have many more recent pictures...I'm usually the one with the camera.
My "buffalo hump" when I'm just standing normally. I had assumed it was due to slumping and being overweight, yet I looked around in a crowded room of around 150 yesterday and even in overweight or those who share poor-posture with me, I didn't see a single hump in the room. 
This is me trying to straighten my back/neck as much as possible lest "slumping" make it worse...it appears to be the opposite!What testing is required for diagnosis?
It takes numerous tests to diagnose Cushing's disease or to differentiate it from other forms of Cushing's Syndrome and Pseudo-Cushings' states. Cushie-Wiki gives a really simple flow chart followed by explanations of each type of test used, I will include just the flow chart and the link to view the rest: http://www.cushiewiki.com/index.php?title=Diagnostic_Testing
How is Cushing's Disease Treated?
What does recovery entail?
Is there a cure?
For around 40-50% of those with pituitary adenomas, transphenoidal surgery is a "cure", for the rest it either had little effect or causes a remission for a brief period of time, sometimes lasting a few years. Many in this group go on to have another transphenoidal surgery, many opt for a bilateral adrenalectomy (removal of both adrenal glands, trading untreatable Cushing's Disease for treatable Addison's disease, meaning their life literally now depends on medications they must take multiple times a day). Some choose a sepcialized kind of radiation when certain parameters are met.
Here is a link to a page listing just a sampling of Cushing's patients and their various treatments (with dates) in honor of Cushing's Awareness Day (April 8th): http://www.cushiewiki.com/index.php?title=Cushie_Warriors
Stuff I've posted elsewhere but haven't edited and consolidated for this page yet:
I actually haven't been able to figure it out...gut-feeling-wise...between the
AI/Sheehan's and the Cushings that Dr. F is testing for. I've been feeling for
a while like it was somehow both, but knew that in all reality the chances of
that were next to nothing (I mean, pituitary adenomas are 1-2/million, Sheehan's
around 5/100K...so the chances of having both?). I was pretty confused but
didn't want to sound crazy by saying what I thought. Both fit so well in so
many ways, though not completely. So maybe this is exactly what it is and why
both sounded so right? Dr. F did say that if I had Cushing's (or Sheehan's for
that matter) that I would be an atypical case.
It would explain why at times I gain weight for no apparent reason, and why at other times I lose weight for no apparent reason (and I don't mean a few pounds here or there, but 1-4 lbs/week for multiple weeks or months)...it could have been up and down cycles messing with my metabolism. I've always accepted that my weight was my fault, but was always irritated that everyone assumed I ate poorly or was totally inactive (okay, well that part is true now!) when I stayed active and ate better than most people I knew, ESPECIALLY the twigy ones!
If I have Cushings, it'd probably be "episodic" (meaning at various times, days, weeks, months or years I'm high, and at various times I'm low...kind of random) or possibly cyclic (which from what I gather generally means high cortisol at night and low during the day), I'd assume mild most of the time (or how else could it have gone on this long, right, either that or my younger body has handled the high periods better?), and started about 15-16 years ago when I was in high school. I fit the Cushings scenario perfectly at that time, but it was a chicken vs. egg thing with the weight, depression, etc and being a teenager I accepted the blame from parents and doctors. About 9 years ago now Britton and I read up on Cushings (his mother died from it because she'd refused all treatment) and SO much of it fit, it is just that it wasn't an exact match at the time (mostly because my sex hormone-related functions weren't affected --and for the most part still aren't) so I read a bit but didn't ever see a doctor about it.
I've learned you can have false positives on high UFC's, though false
"negatives" are very common if you have cyclical or episodic cushings. And
thing also said that people wiith AI can frequently fall in the normal ranges
despite proven dx, fyi. I don't have any known reason for a false high, though.
Unless you have a REALLY high number, they want other highs as well before
diagnosis...preferably in another form of test, but a good endo will continue
testing till highs are proven, disproven over a long time (like a year!), or
another diagnosis is made. Once you're dx'd, they move onto other testing (like
supression tests, etc) to find where it is coming from (adrenal, pituitary,
ectopic) and that further confirms the dx. Some 50% of tumors found via pit
surgery weren't visualized on MRI. In those cases they get sufficient lab
testing to show it's hypercortisol and the likely source and then move forward.
I've also learned that episodic or cyclic cushings can cause hypo-pit or AI symptoms in a low. It's pretty interesting stuff. For one, the hypercortisolemia affects the metabolism, production, absorption, etc of other hormones and can throw them off. But, in episodic/cyclic cushings disease (ACTH producing tumor) the tumor produces excess from time to time, and that supresses the pituitary's own ACTH production much the way inappropriate replacement can, and then when the tumor production cycles back down (not sure the mechanisms at play there yet), your pit is suppressed and you can have low cortisol (not just "normal") before your pituitary kicks back into gear sufficiently. That makes a lot of sense and could explain a great deal.
Not that I want a brain tumor, but hopefully I'll get confirming results instead of conflicting ones so we can start getting some answers instead of more confusion. If it is cushings, I'd definitely be in a high right now so testing should show it (sudden insatiable appetite, 12lb weight gain in last 4 weeks despite no changees in diet and doing more physically than the weeks before, harder time staying asleep, higher bp, etc). I was really worried they left the urine sitting on the counter with the first UFC after I left and it should be refridgerated...the gal told me she was the only one at the lab that day. That would cause a false low though, so at worst it could have been higher and doesn't negate the results. Guess we'll see what the others all say...
Britt and I went through my photo albums the other night and it is a very drastic change between my 14 1/2 y/o pictures and my 16 y/o pictures. I can't really find any pictures that I know for sure are from when I was 15 y/o, but if pictures in the albums are of that age, then it just shortens the timespan that I made that drastic change as we can't see any between look that would suggest a slower transition. I went from about a size 11/12 to a size 18/20 and gained about 60lbs sometime within those 1 1/2 years. My face changed (red, round, acne, didn't have that for the 3+ years before when AF had started), my hair went from super-thick to thin and frizzy, I became depressed/anxious, I started having trouble sleeping, I stopped sports (used to be in softball, competetive jumprope on a state level, played almost the entire game of basketball in my league, swam in front of the house all summer long, etc) and took up music instead and I stopped doing things outside the house. I have the huge stretch marks (silvery now, not red) that go from almost my knees to my elbows and around my back. Britton says I had them when we got married (ie, not from pregnancy). I even have a fat pad that looks similar to the "buffalo hump", but I don't know if normal overweight people get those. Dr. F noted thin skin on the top of my hands in my charting, and apparently high cortisol is about the only thing that does that to young women. What I don't have is facial hair, menstruation issues (aside from maybe a heavier flow, so backwards), infertility, diabetes (though I will with time if I can't get healthy), chronic hypertension, and joint pain.
Britton thinks it can't be a fluke that this disease has been brought up twice for me now, and says the above pictures are not normal for a year and a half's time, even if I was depressed...
Anyway, if more of my current cortisol tests come back high (still waiting on 2 more UFC's, I'm doing my last salivary tonight then will send those 3 in, and the serum one), then Dr. F will probably order more labwork. Either more of the same in the hopes of just getting sufficient lab confirmation (don't know what he requires, especially since that first high was only a little high), or he'll move forward with testing like Dex suppresion tests (basically the opposite of the Stim tests), of which there are various types, or a petrosal sinus sampling, or more CT's/MRI's (to check adrenals or for ectopic tumors --though those are really rare) in an effort to figure out where this pesky tumor might be. Then I'd get approved for surgery. Chances are it is pituitary (some 80% of the 1-2/million), especially since my ACTH has been above 15 twice now...atleast that is what one study said.
Sorry, I don't know if I explained that "Cushing's Syndrome" is 10-15/million and the majority of those have steroid-induced cushings, meaning over-replacement or often from treating autoimmune disorders. "Cushing's Disease" is caused by tumors, is found in 1-2/million, and some 80% of those are pituitary adenomas (benign). The rest are either adrenal tumors or ectopic tumors (meaning anywhere else in the body) and can be malignant or benign...seems like they said usually found in the kidneys or lungs. It is my understanding that that minority often have severe disease, though, and are more likely to get a quick diagnosis with very high lab results.
So, anyway, they would do a trans-sphenoidal surgery where they go in through your nose, through the sinuses, and remove a part of the bone around the pituitary to gain access. They remove whatever tumor(s) they find there (apparently 50% aren't seen prior to surgery by MRI, but their tissue is easily distinguishable to the naked eye) and hopefully don't remove too much of the pituitary tissue. That is a definite risk, though treatable. There is also a moderate risk of a CFS leak, though I forget the stats. They re-seal the area around the pituitary with a fat plug from your own body, I think, and the bone re-grows.
Most people go home from the hospital within a few days. You can't bend over for some 6 wks due to pressure increases, and there is some funky "blow your nose/nose picking" stuff as you could imagine. If you feel worse after surgery (being hit by a truck is the general description), then you know you're in remission. A cortisol of 2 is considered good news after surgery (I'm assuming immediately after, and serum). You go home with AI and on HC. Within 6 months -2 years you gradually wean yourself off the HC as your pituitary starts to kick back in. Some never do, but most are weaned by 12 months post-op. I was reading recovery info last night, and it sounds like it is a long road. Many have emotional symptom improvement immediately, though struggles with the recovery itself, which is understandable. You're weaning yourself from steroids, and apparently it is like being an addict deprived of drugs...the high cortisol has masked the pain of joints, injuries, and even muscle wasting and there can be a fair amount of pain involved (makes me think of Dr. House, though that's necrosis). Some people recovery physically rather quickly, most have to work hard to gain muscle strength back...and take it slowly in the process, doing things like swimming and yoga. I wonder if I could try karate again for the tai-chi like parts and just forgo the actual sparring for a while? I did enjoy that and it is GREAT for working various muscle groups and burning calories.
Few report making it back to "normal", but just about everyone is happy they did it and has major improvements. Some have to diet, some don't. The majority of the weight is lost in the first 12 months (with the average gain from cushings being 55lbs, say you lose the first 35 in 12 months, then 10 the next year, and 5 the year after that and so on till you're stabilized).
The mental issues (memory, etc) generally take years to resolve and some never do. I read articles about that last night, apparently with hypercortisolemia your brain actually shrinks and it lessens the synapses (think my brain hit overload by that point in my reading so I can't explain it better). The shrinking recovers over time but sometimes the synapses stuff doesn't...all depends and hasn't been studied too much if I remember right.
Remission is considered a "cure" after a few years. Sometimes the tumor regrows, or the disease comes back for whatever reason (an ectopic or adrenal tumor, they didn't get all the tumor tissue, they missed a tumor on another part of the pituitary, etc) or it just wasn't successful in the first place. The stats are all over the place on this one. Some say 90% cure rate, some say 40%, my guess is it depends on what you consider a "cure." If the tumor can be identified the majority of people go in for another pit surgery. Some opt for gamma knife radiation, though it sounds as though it is VERY few and has some really specific requirements for where the tumor is in relation to vessels, brain, etc. Some opt for a bilateral adrenalectomy at that point, chosing addisons over cushings. That sounds fairly common, and is the first choice doctor recommendation should a 2nd pit surgery fail, it seems. There is controversy over using a BLA for the 2nd surgery, though seems pretty evenly split among the doctors depends more on the patient and their understanding of what they're chosing.
Medical treatment for cushings is not used long-term and is only for those who cannot undergo surgery, and only if you have type 1 diabetes (cushings causes it) as well, due to the large numbers of high-risk side effects involved with the medications (I think only one is FDA approved, and there are two more, one not available in the states). So, surgery really is the only option and it explains more why people for whom surgery has failed move on to chosing a BLA and addisons. The mortality rate untreated is somewhere around 5 fold, whereas treated it is closer to the norm. It is still slightly elevated, but that is all individual based on how much damage the disease has done to your cardiovascular system already.
I don't have chronic hypertension, diabetes, or joint pain, and I'm young. While they say the same thing as you do with AI "takes as long to get better as you've been sick", I can't imagine it would be 15 years! The younger patients generally recover faster and easier (and 31 is young-ish), and because I don't have a lot of the complications if I do have Cushing's, I should do fairly well.
So, it appears that the norm is to start getting positive test results about 3-5 months before surgery is scheduled...so it'd be fall/winter before we got that far (IF we do).
Friday, May 18, 2012
Hands that lift
There have been a number of people who have shown us small acts of kindness during our struggles, often without any outside prompting. These hands have lifted us up in times of need...without judgement, lectures or threats. I've thanked them already in person, and though I don't intend to share this blog locally, I will express thanks to them specifically here anyway in no particular order. I figure it is safe to share first names...
To Karleen who has helped us from the beginning, whenever able. She's cleaned my kitchen, washed dishes, sewed Christmas quilts, folded laundry, vacuumed the floor, helped wrangel kids at church, traveled with me when I shouldn't do so alone, babysat so we could go out for an anniversary dinner, watched children so I could attend appointments and even stayed with them so Britton could travel with me for my MRI, taken kids on walks, driven me to meetings when I couldn't drive, attended meetings as a third party, called to asked how I was doing, brought meals, and has never questioned the validity of my being sick or the effort that Britton has made.
To Lorrie who watched kids for an ultrasound, took them to make Christmas crafts, and threw us a lovely baby shower.
To the sisters who made freezer meals when asked by Lily (and Lily for asking), though I only know of two of you...Sandy and Lily.
To Sydney and Theresa...you may have been paid to do your jobs, but we all know there are nurses and then there are nurses. You take it beyond medicine and truly care.
To my aunt who visited me in the hospital during the days to help watch Millie so I could rest, who brought me my medication when I couldn't get to the pharmacy, and who took time from her busy schedule so that my mom can come see us from time to time.
To Camille who has become a good friend. She's experienced first-hand the kind of fatigue issues I've had when her daughter was ill and recovering, and she's also experienced inappropriate judgement and conduct in ways similar to what we've been experiencing. Being able to talk with her from time to time, email, and have her ask how I'm doing (and want to know the full answer) has been invaluable. She has also brought us meals, washed and sorted baby clothes to help us get ready, stopped by to chat, and stayed with me a couple nights following my emergency cesarean in the hospital. I couldn't care for my daughter by myself and she became a live-in grandma that offered emotional support and allowed me the opportunity to sleep!
To Karen who made us a meal after Millie was born, completely out of a desire to serve and on her own accord.
To my mom who talks to me on the phone daily though she cannot be here, helped sew the Christmas quilts, sewed some burp rags, sends meals off and on for us, gave us her air miles for travel, and always sends a treat up for the kids (much to Britton's dismay!).
To Aaron who has helped care for chickens and goats when Britton was out of town.
To Philip and Julie who cooked us a lovely Easter dinner, treated our kids to an Easter egg hunt, helped clean up while they were here, offered to help in whatever ways they could from the East coast, and are helping pay for the cleaning help we're getting one to two days a week.
To Ken who has allowed us to take his wife from him on many occasions.
To Valerie who took time out of her brief vacation to first visit me in the hospital, then volunteed to watch my 5 children so Britton could attend the priesthood session. In the two hours she was here watching children she had our house cleaned from top to bottom!
To Ruby who stayed with me the other nights in the hospital to take care of Millie, and who also sent us a meal shortly after we went home.
To my visiting teachers, Jen and Stephanie, who organized the group of ladies that came to my house to clean for an hour, who each brought us a meal (one that night and one the next), did the dishes again in February, and originally tried to set up ongoing meals and help.
To Teresa who had the unfortunate luck of asking me how I was doing after a particularly emotional sacrament meeting in February. She brought a meal the very next day, on her own accord, and then sent a frozen meal later.
To MaryAnn who also watched our kids for an ultrasound and who watched them again so that we could go out for a lunch date. She's frequently offered to watch our then-five children and if I'd had the umph to get them ready and drive to and fro, we'd have taken her up on that offer for sure.
To the sisters who came to clean my house that Monday in January...Jaylyn, Janae, Jen, Tina (Teana?), Kristen, and Stephanie. Hope I didn't forget someone.
To Joy who sewed our fabulous newborn diapers after we cut them out, along with some lovely burp rags.
And lastly, to the people on the hormone-disorder forums and groups of which I am now a part, for sharing your own experiences so I don't feel so alone and abnormal, for your support and encouragement, and for sharing your collective wealth of knowledge.
To Karleen who has helped us from the beginning, whenever able. She's cleaned my kitchen, washed dishes, sewed Christmas quilts, folded laundry, vacuumed the floor, helped wrangel kids at church, traveled with me when I shouldn't do so alone, babysat so we could go out for an anniversary dinner, watched children so I could attend appointments and even stayed with them so Britton could travel with me for my MRI, taken kids on walks, driven me to meetings when I couldn't drive, attended meetings as a third party, called to asked how I was doing, brought meals, and has never questioned the validity of my being sick or the effort that Britton has made.
To Lorrie who watched kids for an ultrasound, took them to make Christmas crafts, and threw us a lovely baby shower.
To the sisters who made freezer meals when asked by Lily (and Lily for asking), though I only know of two of you...Sandy and Lily.
To Sydney and Theresa...you may have been paid to do your jobs, but we all know there are nurses and then there are nurses. You take it beyond medicine and truly care.
To my aunt who visited me in the hospital during the days to help watch Millie so I could rest, who brought me my medication when I couldn't get to the pharmacy, and who took time from her busy schedule so that my mom can come see us from time to time.
To Camille who has become a good friend. She's experienced first-hand the kind of fatigue issues I've had when her daughter was ill and recovering, and she's also experienced inappropriate judgement and conduct in ways similar to what we've been experiencing. Being able to talk with her from time to time, email, and have her ask how I'm doing (and want to know the full answer) has been invaluable. She has also brought us meals, washed and sorted baby clothes to help us get ready, stopped by to chat, and stayed with me a couple nights following my emergency cesarean in the hospital. I couldn't care for my daughter by myself and she became a live-in grandma that offered emotional support and allowed me the opportunity to sleep!
To Karen who made us a meal after Millie was born, completely out of a desire to serve and on her own accord.
To my mom who talks to me on the phone daily though she cannot be here, helped sew the Christmas quilts, sewed some burp rags, sends meals off and on for us, gave us her air miles for travel, and always sends a treat up for the kids (much to Britton's dismay!).
To Aaron who has helped care for chickens and goats when Britton was out of town.
To Philip and Julie who cooked us a lovely Easter dinner, treated our kids to an Easter egg hunt, helped clean up while they were here, offered to help in whatever ways they could from the East coast, and are helping pay for the cleaning help we're getting one to two days a week.
To Ken who has allowed us to take his wife from him on many occasions.
To Valerie who took time out of her brief vacation to first visit me in the hospital, then volunteed to watch my 5 children so Britton could attend the priesthood session. In the two hours she was here watching children she had our house cleaned from top to bottom!
To Ruby who stayed with me the other nights in the hospital to take care of Millie, and who also sent us a meal shortly after we went home.
To my visiting teachers, Jen and Stephanie, who organized the group of ladies that came to my house to clean for an hour, who each brought us a meal (one that night and one the next), did the dishes again in February, and originally tried to set up ongoing meals and help.
To Teresa who had the unfortunate luck of asking me how I was doing after a particularly emotional sacrament meeting in February. She brought a meal the very next day, on her own accord, and then sent a frozen meal later.
To MaryAnn who also watched our kids for an ultrasound and who watched them again so that we could go out for a lunch date. She's frequently offered to watch our then-five children and if I'd had the umph to get them ready and drive to and fro, we'd have taken her up on that offer for sure.
To the sisters who came to clean my house that Monday in January...Jaylyn, Janae, Jen, Tina (Teana?), Kristen, and Stephanie. Hope I didn't forget someone.
To Joy who sewed our fabulous newborn diapers after we cut them out, along with some lovely burp rags.
And lastly, to the people on the hormone-disorder forums and groups of which I am now a part, for sharing your own experiences so I don't feel so alone and abnormal, for your support and encouragement, and for sharing your collective wealth of knowledge.
Thursday, May 17, 2012
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