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.
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