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'll list off the things I've tried, just for others' information:

Nutritional Balancing Therapy --  This one nearly killed me.  Okay, not quite that dramatic, but I went from having "cortisol highs" which I called "lows" that lasted 1-3 days to having low-swings that lasted weeks, then became my new "normal" low level of energy and high level of symptoms.  I should state that we had no idea what was going on at this point, I just knew that I needed to get healthy and that there was something going on with my body that I didn't want to worsen and go unchecked.  I was also taking Karate 3 times a week for anywhere from 1- ?2 1/2? hours per session (Which, if you're allowed to do strenuous exercise as I no longer am, burns an incredible amount of calories. Something like 650/hour!  AND unlike running, you can sustain the workout for hours instead of 15 minutes.  LOL).  Those factors combined to make me so exhausted that I couldn't stand up and could hardly sit up.  This was probably also affected by my low aldosterone, as I get easily dehydrated with high temperatures and sweating (I've been told to eat more salt, and then, eat yet MORE salt!). 

H2O2 baths, and medicinal H2O2 internally, for detoxing --  Nothing noticeable, discontinued.

Thyroid Replacement --  After 6 months on these with no obvious improvement, I stopped taking them.  Oddly enough, in the last month or so my hair has thickened slightly and the nasty, grey dry skin on my knees has just disappeared on it's own (I couldn't get rid of it on my knees and elbows no matter HOW much lotion and scrubbing I did before).  I may look at going onto natural thyroid replacement.  I have taken some herbal supplements and kelp to help support my thyroid.

Vitamin D --  I still take this, though not weekly like I should (just because I forget!).  50K IU's a week.  I haven't noticed much of any change with this, either, but I know we Alaskan's are sun-light deprived!  I should add that I also have a Vitamin D light in my bathroom that I turn on during my detoxes.

Liver Detox (Gerson style) --  I did this eventually as a way to help along the detoxing when I was on a 30 day juice fast.  My energy improved quite noticeably.  I assumed it was the juicing (and maybe in part it was), but when I stopped the juice fast but continued the detox, it was obvious which was having the effects. I do not get any kind of "buzz" or "high" from this as people seem to assume, but about 24-48 hours later I do notice that my face flushes and I become extremely exhausted.  With my husband's injury and my having to take on all the work at home, after a couple of weeks I was going downhill quite fast, so I decided to try a second one a day (In Gerson's they do something like 6-8, I think!) in the afternoons/evenings.  It seems to help, though with my symptoms worsening and improving fairly randomly already, it is hard to see direct results with anything, even this.  I am not able to do two of them every day just due to timing.

Juice Fasting --  This made me so exhausted (for more than a week, which is long for an initial detox) until I added in the above liver detox.  I dropped weight really quickly, but as soon as I ate a small solid meal (healthy and small), all the weight came right back on (like 5lbs with just that one meal!).  I did NOT eat 5lbs of food!  LOL  I found out that I prefer EATING my veggies to drinking them.  And that drinking juice is easier for me than eating fruits.  I'm a veggie person.  I also don't like all the things people traditionally add to veggie juices to make them taste good --like cilantro, ginger, or peppers.

3 day juice cleanse (Dr. Christopher/Mucusless Diet) --  I felt fairly good on this, but obviously you can't sustain a mono-diet juice fast for very long!  I did not transition to the full mucusless diet, so cannot attest to that one way or the other.

Grain and added-sugar-free diet --  I tried this in the off chance that I had something along the lines of a gluten sensitivity (it is a major cause of systemic inflammation in those that have it).  I was pretty sure I didn't because I'd been on allergen-free diets before for my children's sakes, and that was again confirmed.  Britt lost 5lbs over those 3 weeks, but no changes for me.  I did learn how to cook some crazy things!

Oil Pulling --  This I am quite happy with, though it hasn't seemed to have any affect on my illness.  It has made my teeth feel squeaky clean, wipes out any tooth pain, and has cleared up potential abscesses/infections in gum/teeth on at least two different occasions (with two different people).  I continue this almost daily, and try to do it during my detox each morning.

Right now I'm finishing up a parasite/candida flush by Kroeger (Wormwood) --  Nothing noticeable, really.  I won't continue it, but for a few bucks, if it did the trick it would have been worth it.

I'm considering a raw-food diet and have been looking into different methodologies (and recipes!).  Basically, I need to be sure that if I start this, I stick with it for a while.  Also, having learned from the previously mentioned diets, I cannot have a major and sustained drop in energy.  A few days is one thing, but weeks to months is not something I can afford, even if there is a net gain in the end.  This and the cost (!) are my big hold-ups.

I also have a Do Terra essential oil (Thanks, Amber) that is meant to balance out hormones that I'm probably going to try as soon as I complete the wormwood.

I will also be starting a symptom diary/food log.  With over 20 catagories (mostly symptoms, food, weight, liquid intake, etc) it is going to take a LOT of work, but it should allow me to get a more definite idea of what does and doesn't work over time, as well as help me to recognize the highs/lows as they're coming and going, and see if there is any type of pattern to it.  Then, if I do start up testing again, it'll make it that much easier (And cheaper --those labs are expensive!).

If I forgot something I'll add it in later.