My Cushing's Story

I started writing up a bit of my story because I joined a new support group, and realized it was far too long for an introduction.  I decided I would paste it into a document and work on finishing it as my story for the Cushing's-Help website's patient bio's.  I'm not sure I'm done...I should probably add my symptoms list for others to be able to relate to themselves, but here is what I've written thus far this afternoon:

I've had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn't realize they were related to illness, or that I had one overarching disease causing them all. 

Looking back, the onset of my disease was in my teen years.  I gained more than 60lbs in roughly a
year's time without changing diet or activity level.  I developed stretch marks that ran from my knees
to my elbows (and everywhere in between!).  I started losing my once-thick hair.  I developed horrible acne.  I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night.  I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on it either).  I was told it was either all in my head or all my fault (by varying people, some directly, some implied it) and I internalized that and just assumed I was too lazy and had bad genetics...  I TRIED to exercise but would feel so sick afterwards that I couldn't make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference.  When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it'll go away), and sometimes treated me like I was just plain crazy.  I still don't go to doctors unless I have to because of those experiences.

After getting married, I had had some complicated pregnancies...but it was more than that.  I would get flank pain and drop into "lows" that I didn't understand, complete with feeling cold, diarrhea,
weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it).  I
had high cardiac output but low blood pressure and a high pulse rate.  I'd go into tachycardia for NO
apparent reason and had all kinds of cardiac monitoring done.  My blood pressure was labile, but usually low, and still I'd end up with severe complications. Breastfeeding wasn't going well despite the "mechanics" and flow being there...my babies were never satisfied and I always felt sickly.  The
differences were drastic (but a bit graphic to share here publicly).  I seemed to get pregnant at the
drop of a hat, but my body seemed unable to deliver on it's own.  My body just didn't react like it
should to anything.  I even once had an episode post-partum that now I know was likely somewhere between adrenal insufficiency and adrenal crisis.  I was left alone to sleep it off (just thinking about it now scares me), but I didn't know any better at the time.

Then about 3-4 years ago I hit this point where I just had the feeling that if I didn't get whatever was
going on under control, I'd end up with something more permanent and dangerous (like cancer or
diabetes).  I still got seemingly random symptoms but I had too many of them, and they were getting
worse.  I also started to notice that my good days and bad days seemed to come in cycles.  3 days, 3
weeks...I'd be good for a while, then worse for a while, then good for a while.  I had already eaten
"clean" and kept myself active, so I decided to try "nutritional balancing therapy" and started taking a
karate class multiple times a week (burns TONS of calories, fyi).  They ran some tests for various
vitamins/minerals, and said I had adrenal insufficiency.  The diet I was put on was a higher fat (good
fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in
more fat) but between the diet and the exercise, I became so ill I couldn't get off the couch for about
4 weeks.  I had to give up both and it took some time to recover, but I never got back to where I had
been, not even close. 

I started studying adrenal fatigue and came to the realization that I had done everything to correct AF
but was still going downhill.  I obviously needed outside help.  I had tried supplements, diet (years of
it), everything.  I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant.  I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it.  I just became more and more exhausted.  To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids.  The CNM and OB both said I was just depressed and upped my dose of Vitamin D.  They wanted me to go on antidepressants, and I refused.  I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn't treat me because of my pregnancy.  No help, no suggestions, just "come see me if you make it out alive" basically. 

I had joined an Addison's support group online, and they helped me learn a lot about AI and Addison's, about symptoms, testing, about Hashimoto's, etc.  I am SO grateful to these women who supported me and taught me much.  They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately.  I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help.   I was desperate; I was hurting.  My whole family was struggling because of this disease and the treatment (and lack thereof) we'd received from doctors and so-called friends.

These Addisonians had been talking a lot about one specific endocrinologist that specializes in
pituitary disorders (Dr. F).  In complete desperation, I emailed him, knowing the chances that he'd take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely.  But I was scared of what a delivery with untreated Addison's might bring (I knew the stats and knew I didn't trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn't even test my thyroid or iron!).  I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady.  She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly.  He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets.  My appointment was on Valentine's evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!

I went in SURE I had Addison's Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact.  I came out with a LOT of testing for Cushing's Disease.  It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol.  You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands.  While the tumor is actively pumping out ACTH, it can shut down your own pituitary's normal production because the pituitary feedback says there is already too much cortisol in your system.  Then, if/when the tumor "kicks off" (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in.  This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.
I was unprepared for the change in direction at my appointment.  I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing's Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms.  I have cyclic Cushing's Disease.  I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing's (she refused treatment and was a stubborn, intelligent women who got her way).  I had read through some information then, with my husband.  We had concluded that it was a possibility, but I didn't have enough of the symptoms (maybe half?) and decided that I wasn't nearly sick enough for that to be the problem.  How wrong we were!  I certainly wasn't as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.

At my appointment I was also told I had hypothyroidism.  He ordered more of those tests (to get a trend) and an antibody test.  I had Hashimoto's Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication.  My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he'd have had me in the hospital for IV iron infusions.  Needless to say, I was put on iron --lots of it.  My vitamin D was still lower than he'd like, despite having been on treatment, so he switched me to 50K iu's of D3 weekly (My OB had chastised me repeatedly for taking D3 instead of D2; Ha ha!).

I had to wait for a while after my pregnancy to allow my body to normalize before doing my testing.  I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results.  My pituitary MRI was read clean.  Dr. F told me he didn't know what was wrong, but that it didn't look like it was Cushing's because of the testing.  I was not prepared for that, and just ended the conversation.  I was emotionally, mentally, and physically exhausted and didn't plead my case.  I didn't have the money to test more, even though I was pretty sure I needed it.  And looking back, had I asked, he probably would have obliged.

I decided to again try natural healing methods.  Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse.  Every time I hit another "low", it seemed to become my new normal...and that was scary.  I kept losing more energy and strength, more of my mental ability, and each time I couldn't imagine it getting worse, yet it always did.  (I still haven't learned this lesson!)

About a year later, after a lot of prayer and thinking, after I'd exhausted most natural treatment
methodologies I felt willing to try, I realized I did indeed need to go back and push for further
testing, and test by symptoms.  Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts. 

I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or
arguing necessary!  He gave me more sensitive testing this go round, and told me to test as much as it took.  He believed me!  It was as if the way just opened up for me this time.  I was uninsured, but I applied for the Cushing's Assistance program through NORD (The National Organization for Rare Disorders) and was accepted.  They offered to cover the costs of testing, doctor's appointments, and travel needed for the same, that would lead to a diagnosis of Cushing's Disease.  I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle.  It was an answer to a prayer I didn't even think to voice.  I then called to share the news with family and friends and bawled again, scaring yet more customers!

Tracking my symptoms wasn't a very easy task.  I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out.  My testing was also complicated by living in Alaska.  I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond.  It took about a month to get each result back.  Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data. 

In that time, I also made friends on the Cushing's-Help website and Facebook groups.  I learned a LOT of things from them, and one friend in particular likes to "read" pituitary MRI's the way I like to "read" fetal ultrasounds.  She looked at my previously "clean" MRI and said that in her lay opinion, it was anything BUT normal.  As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma's and suspicious areas on my MRI to forward on to my endocrinologist.  As it turns out, my doctor hadn't read the disc himself and had just read the report.  He looked at the disc and agreed it was not normal, and sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum "rainbow" shape to the pituitary) and that it should be read by a neurosurgeon this time around.  JOY OF JOYS!  This brought me even more hope!  He said SURGEON, not just himself...that meant I was getting so close to that diagnosis and surgery clearance --to getting help.

I scheduled my MRI trip (can't do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city.  NORD paid for the flights, reimbursed me for the cost of my doctor's appointment, paid for the MRI, and paid for my hotel room.  My husband came with me this time, and it was the best doctor's appointment I've had in my life.  I was still nervous that somehow it wasn't enough, or that the MRI done the day before my appointment would miraculously have become normal again.  That was not the case.  My MRI showed two adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient...and it felt AMAZING! 

Who knew we'd be so excited to hear I was diagnosed with a deadly disease?  That we'd shout for joy and clap our hands at finding multiple tumors in my head?  I had a smile that wouldn't go away.  The medical student shadowing my endocrinologist hadn't seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy!  I also wore my "Does my pituitary gland make me look fat?" shirt to this appointment, so we were joking, taking pictures, and having a grand old time.  He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, "It's right HERE!"  Dr. F is generally stoic, dealing with very ill people, with a very serious disease, and he is often their last hope at life...so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him.  I hope he felt our gratitude as well.  

The "pick whose going to cut into your head" decision took a while.  I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the
endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at
home.  I was not willing to start over after all that hard work and with as quickly as I was
deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I
could again get insurance without preexisting conditions clauses.  I was able to be referred to my
first-choice of neurosurgeon's and am on Ketoconazole to help lower my cortisol while I wait. And it
just so happens that my brother-in-law has recently moved with his family to this large city and offered us a place to stay before/during/after surgery. 

Keto has it's benefits and side effects, but I'm glad to be on it while I'm waiting.  I feel like it is
giving me some practice for what things will feel like and when to act in the months following my
surgery.  I won't get a set surgery date until January 2nd after my insurance is fully in effect, but my
surgery is penciled in for January 24th right now.  I'll update after my surgery when I am able.

New GP!

This week I returned to being treated by a GP I had had about 6-9 years ago.  He is very experienced, keeps up-to-date, and takes on the more difficult cases in town.  I needed someone who would not be intimidated by all the intricacies of a Cushing's Disease diagnosis and the ins/outs of surgery and recovery (since that is very much a long-term process), and I especially needed someone who would learn about my illness and needs during recovery, so that in an emergency he could make quick decisions.  If I show up in the ER in adrenal crisis, I can't have a doctor that will wait around for a response from Dr. F (my endocrinologist 3 states away) before acting...I want to live!  So, I set up an appointment, and it took about a month to be able to get in to see the doctor himself (others in his office could have seen me sooner), but it was well worth the wait!

I was worried that he would question my diagnosis, question my endocrinologist's credentials, not understand the breadth and depth of it's effects, not anticipate the long recovery time and need for continued monitoring and treatment post-op, etc...BUT I WAS WRONG!  I guess you get used to the nay-saying, judgmental doctors who automatically assume you're just fat and lazy, read too much on the internet, saw a quack, or are simply mad that you'd seek a second opinion, so when you see a "good" doctor that is both knowledgeable AND supportive, it is like a window opening from heaven, replete with golden beams lighting their face and the heavenly choral "Aaaaaaah!"

He did initially ask about my endocrinologist, but was more than happy seeing the positions included in his signature to ask no more (he has a CV of GOLD!).  He stated that he LOVED the thorough, well-organized dictations from my endocrinologist.  He did ask about my symptoms and wanted lots of detail (symptoms at time of onset, symptoms now, what signifies a high and a low, etc), but it really wasn't coming from a place of doubt, and honestly didn't even feel like he needed to know that to be able to treat me in the future...it *felt* like he just wanted to know more, to have more information about a rare disease and what it looks like in real life.  He even went so far as to say, with compassion, that I must have been through a lot, with doctor's wondering what was wrong with me, people treating me like there wasn't anything wrong, etc.  !!!  If I weren't trying so hard to keep my brain and words in check (the fog, memory, and word recall/saying the wrong words are SO hard at times), I probably would have cried right then and there.  Yes!  I told him that years ago, he actually tested me FAR more than anyone else, looking for CAUSES for my unexplained bruising, CAUSES for my unexplained tachycardia...when other doctors rarely saw more than one symptom and generally tried to treat just that, if anything.  He was the doctor that gave me the typical "when you hear hoof beats, think horses not zebras," after having done the testing above, but I was nice and did not remind him of that.  (Now, if it were the OB I dealt with 2 years ago...LOL!) 

Then he asked what I wanted from him (not in a challenging way), and I explained Dr. F's unconventional practice, that I really need a good GP at home for emergencies and the day-to-day that understands the complicated nature of this disease, and we talked about adrenal crisis post-op.  He knew enough to make sure I knew there was a chance I would be adrenal-insufficient permanently post-op.  We talked a little about being hypo-pit (losing hormone production from pituitary damage -- either due to the tumor itself or the surgery) post-op, and even that there would be no way to know how much they might have to remove till they actually get in there, nor how my pituitary will react till after surgery and some healing.  We discussed that often multiple surgeries are required with my kind of tumor(s).  AND, since he is the medical director of about 2/3rds of the EMS in town, he did say they don't carry the solu-cortef that I would need in an emergency on the ambulances, but that if I had my emergency injection kit, they could call him directly and get legal permission to administer my medication (You often lose cognitive ability or go unconscious with an adrenal crisis, so we cannot assume I will be able to give it to myself...and while my family will be taught how to do so, we cannot assume I will always be with them).  I actually know the medical director (and EMS lieutenant) for the ambulance crews in my section of town, and would have to bring my emergency letter to them so that they are aware of my case and what to do, as again the medical director would need to give legal permission allowing the EMT's to administer the life-saving medication.  That was good to know. 

And I left with him asking for the before/after onset pictures and detailed symptoms list I made up for the surgeon.  He also wants to see my most recent MRI.  In the end it cost a boatload of mula, but it was SO worth it.  I feel like he is one that will enjoy the challenge and love the rarity of my case, and will thus SEEK the knowledge needed to treat me.  I feel like I will be in good hands in my home town of "Nowhere, AK."

Magic Foundation Convention

The Magic Foundation's Cushing's Convention's location and dates have been announced! 

April 24-27, 2014 in San Antonio, TX

There are more details yet to be ironed out, but every year they have medical professionals speak and educate about Cushing's disease, it's diagnosis, treatment, recovery, even living with it and the changes it causes.  Last year Dr. F (my endocrinologist) and Dr. McC (possibly my neurosurgeon) both spoke and I'm SO sorry I missed it!  I don't know who it will be this year, but I am SO hoping that everything will work out for me to be able to attend!  And as amazing and needed as that education is, what is drawing me even more is the chance to meet other Cushies...to be surrounded by people who just get it.  I've "met" many online, and it would be amazing to finally get to actually meet them in person.  Bring on the zebras!

The Hormone Storms of Cushing's

You wouldn't expect someone who just drank alcohol to not react to it, would you?  No, that'd be silly.  It is a chemical in their body, and once there, they have no control over what it does to them.  Someone used to the effects of alcohol over time would acclimatize to it to a certain degree, but they cannot fully stop it's affects on their body or their actions.  Now imagine not having control over when the alcohol is introduced into your system, or how much is introduced, or how often.  Imagine not knowing it was coming until you were already tipsy or drunk.  Imagine not knowing how long you would stay drunk and not knowing when to expect the crash and hangover that would inevitably come.  Imagine getting to the point where physically you are always in one state or the other --drunk or hung over.  Now, tell THAT person they can choose not to be affected by the chemicals raging through their system.  Imagine how that person, force fed alcohol, would feel to be told it was a simple choice they could make to not allow themselves to be drunk or hung over? 

I was told a few days ago that the emotional upsets I feel due to the hormone cycles caused by Cushing's was something I could control.  "It is just like PMS, so you can recognize it and just not give in," is what I was told.  At the time all I could really say to this person is that it is like 100 times that of PMS.  They obviously still have not learned about my illness and don't seem interested in doing so, which hurts.  But the reality is, PMS isn't a very good comparison.  While both may be hormonal, that really is where the likeness stops.  It isn't natural, it isn't predictable, it isn't controllable, it is an instantaneous storm that sneaks up on you and flies away just as quickly, but when it is gone there is still no "relief," just a different set of symptoms and emotions.  There is no "calm" in this storm, you are either at one extreme or the other.

My first zebra print

I've been contemplating making/buying some awareness jewelry to go along with my two Cushing's Disease T-shirts, but just can't seem to find the perfect thing at the perfect price.  So, I'm probably going to order some of the yellow/blue awareness ribbon charms and figure it out as I go.  Jewelry made with them could be great "thank you" gifts to those who've helped in this journey (assuming I make them!). 

I also started considering zebra print items...I REALLY want a pair of crazy heels, but I know that there is no way I could walk in them so they would never get worn (Perhaps that'll be my "recovery" gift to myself in a few years?).  So, I've looked at a few purses but I don't want to buy a cheaply made one.  I rarely wear sunglasses in Alaska, so that option isn't worthwhile either.  BUT!  While shopping recently I DID find a zebra-print scarf and ear muff band!  They'll only be useful on the cold days of winter (we get mostly rain here), but I'm excited to add them to my outerwear wardrobe to show support for those who suffer from rare diseases.

Some hoof beats are made by zebras.

Update 10-19-2013

I haven't updated in a while, so here's what is going on right now:

I'm still awaiting a surgery date.  Dr. P's endocrinologist has to go over my paperwork and decide if I'm ready for surgery.  He said I would hear back within 1-2 weeks, and Tuesday will be the end of week 2, so any day now, in theory.

Because of the feeling I got from him on that phone call (and all the negative reviews I've heard of this endocrinologist --even from his own mouth-- about his experience with and understanding of Cushing's Disease), I decided to come up with a "plan B", which then led to a "plan C" as well.  ;)

Dr. F (MY endocrinologist) sent a second surgery referral to a neurosurgeon in Texas at MD Anderson.  Dr. McC was my first pick, but surgery with him would have to wait until January 2014, when I have insurance coverage.  There are various reasons this might be the best scenario, but I'm not closing the door on Dr. P in Ohio yet.  Dr. F told me this week that Dr. McC accepted my referral and said he would be pleased to help me.  (Oh, and he has already fought and won the battle to be able to decide for himself whether he will preform surgery without outside oversight, so that means that I wouldn't have to play this waiting game).

Dr. F also had me schedule a phone appointment for this week to discuss going on medication while I wait for a surgery date.  I started 400mg daily (200mg at 8pm and 200mg at 10pm) of Ketoconazole on Tuesday evening, and so far so good.  It is taken at night to try to flip my diurnal rhythm back to where it should be (ie, low at night, high in the morning).  I have not needed a morning dose of hydrocortisone yet, but have them on-hand should I swing too low or my body not be "high" enough in the mornings.  I have noticed a few improvements so far, the earliest and most noticeable being my ability to sleep.  Many have said that it took a while for the medication to really kick in, and that they often felt worse for a while (with increased intensity of "low cortisol cycle" symptoms) until their body adjusted to the new levels.  I'm in a high cycle right now and hopeful yet more improvements will come, though I am a bit leery of the aches, pains, etc increasing.  I'm hoping it'll all go well and I can stay on this medication, getting my body in better health for my surgery and recovery.

Zebras

Zebras (and their stripes) have come to symbolize rare diseases.  There is a common phrase used among medical personnel that goes something like this:  "When you hear hoof beats, think horses, not zebras."  And it is meant to remind them that the most likely cause is the one they should test for first.  BUT, far too frequently this phrase is used as an excuse by medical professionals not to take our concerns or opinions seriously, and instead of working their way up to testing us for those "zebra" conditions, they tend to treat all symptoms separately and fail to look for a common cause.  This can lead to years of frustration, heartache, and worsening illness for those of us zebras that are trying to survive in a world full of horses. 

I used to think animal prints were somewhat tacky, but I must say, I now find zebra print full of meaning and plan to add it to my wardrobe.  Stripes are sexy! 

Don't let your illness define you!

I keep seeing various meme's about how we shouldn't let our illnesses, struggles or tragedies define us. And while I understand the meaning behind that, every time I read one of those "uplifting" thoughts, it just hits me wrong. I've spent some time thinking about it, and I think I know what it is: While "Me" will never fit in a neat little box with just one definition, my disease by all means has become essential to defining who I am.

It appears the onset was approximately 17 years ago. More than half of my life has been spent living with this illness, and it became a part of me before I ever finished puberty or became an adult. I gained approximately 60lbs in one year despite not having changed my eating or exercise habits. My hair went from thick and straight to almost balding-thin and wiry. I developed bright red stretch marks from my elbows to me knees. I became bogged down by depression and anxiety for no apparent reason, and wen...t from being an early riser to being wide awake at night. Things have progressed slowly since then, and I am lucky (in some ways) that I do not have florid disease or I would not be alive, though it's toll increases the longer I am untreated.

This disease really does affect every process within my body and it affects every aspect of my life...My digestion, my energy, my bones and muscles, weight gain and distribution, my ability to sleep, my kidney function, my liver function, it literally shrinks your brain, my skin, my immune system, my veins and arteries, my heart, my ability to heal, my emotions, my pain tolerance, my teeth, my hair, my insulin (and thus blood sugar), my vitamins and minerals, my cravings, all other hormones in my body, my memory, and even my ability to communicate. And this is the simplified version!

I have Cushing's Disease. It has been so much a part of me for so long that I do not know what "normal" is, I don't know what is just "me" and what is the "cushings." I feel certain I will achieve a cure and at least come close to knowing, but I won't ever get back to the "me" I would have been without it. I will forever be a "Cushie" and that doesn't have to be a bad thing.

Cushie Steph makes an AWESOME music video!

This is AWESOME! A Cushing's Disease music video:

http://www.youtube.com/watch?v=oTmJCzZHD58&feature=share&list=PLCBB337E85DCF0E3A

 

 

(Just be warned it has a little language.)

Dr. Oz Cushing's Surgery Video with Lori

I've asked on face book Cushing's groups for first-hand experiences, good and bad, with Dr. Prevedello, and I've heard NOTHING but good thus far!  One of the people that messaged me privately was this woman, who appeared on Dr. Oz as they followed her surgery with Dr. P. 

It was so touching, I thought I would share.  And now that this might be my surgeon and hospital, it hits home even more.  There are 3 parts:

http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-1
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-2
http://www.doctoroz.com/videos/out-control-obesity-one-womans-struggle-cushings-disease-pt-3

NEW MRI --a HOT MESS!

Here is about the best single slice I could copy that would show the whole mess that is my pituitary!  Some portions show better in other slices or other series, but this is a good middle ground.  There is a larger adenoma close to my left carotid (on the right side of my pituitary on the screen --it is backwards like an X-ray), and one near the right also (left side of screen).  The pituitary does NOT enhance uniformly (the whole thing should be about the same level of white, not graduating levels of grey/white).  It is VERY asymmetrical, and doesn't look at all like a little, fairly flat bridge.  In fact, it looks like it has a shark bite out of the right pituitary (much like a post-op MRI would), and it has a big blob on the left pituitary with "fuzz" at the bottom.  Dr. F says the adenomas we see may well be connected across my pituitary, and that my surgeon will really have to explore the whole gland.  He was also very clear in regards to my concern at losing pit function that "NOTHING is worse that Cushing's; hormones we can replace."  Without further ado, here is my new and far-from-improved pituitary!  ;)

Click on the picture to see a close-up.

It is official! I am diagnosed with Cyclical Cushing's Disease, and cleared for surgery!

Dr. F and I talked about a couple of neurosurgeons, but it looks like the MD of choice will be Dr. Prevedello at OSU (in Ohio).  

 

I don't need further tests at this point, Dr. F sees tumors on both sides of my pit, everyone LOVED my Cushing's shirt (and wants the link for his website --His med student had to take a picture of it before I left), Dr. Z took 9 tubes of blood (7 red, 2 purple-tops -OY!), Dr. F gave me a supplement to help with the muscle wasting due to Cushing's (He's also a PharmD), I have all my post-op information, lab orders, and even prescriptions (for the hydrocortisone and solucortef, anyway) already. YEHAW!     

 

So now I'm waiting for the official referral to the surgeon, and then we'll be scheduling surgery!  We're hoping it'll be sooner than later, but will update again! 

 

 

The famous Dr. Friedman, otherwise known as the "Cushing's Wizard."

 

                                     

 

Yes, it IS all in your head...RIGHT HERE!  ;) 

Cushing's Gear

I've ordered myself two fun shirts (Yes, I splurged!) and am REALLY hoping they make it here in time for my trip!  I can just see wearing these to my endocrinologist and MRI appointments and the laughter that will ensue! 

Please consider supporting a good cause, as the funds from this shop support the www.cushings-help.com family of websites.  The main page:  http://www.cafepress.com/sk/zebraesque

http://www.cafepress.com/mf/70268924/does-my-pituitary_plus-size
And this one too:

http://www.cafepress.com/mf/70271826/you-are-right_plus-size

Come on, mail! 

More test results!

I now have a 24hr urine that came back with a 17 ohs (kind of what your body breaks cortisol down into) at 9.3 in a range that goes to 6, I have two 10hr urinary free cortisols that are almost have the daily norm (for what should be THE LOWEST point of the 24hr day) and also of diagnostic levels, and today I just got results for another 24hr urinary free cortisol that was 90.8 in a "normal" range of 4-50.  YAY FOR BAD TESTS!!! 

The other good news is that NORD has now paid for my airfare, my hotel, and my MRI and Dr. F appointment are all set up.  In just under a month, I am expecting to have a GREAT trip with my husband (first kid-less trip together in 7 years), and hopefully a diagnosis!

God is good!

Cyclical Cushing's

I appear to have the cyclical form of Cushing's Disease (discussed in the second article), which means my body cycles from normal cortisol production, to overproduction, to underproduction, sometimes randomly, sometimes in a pattern.  Looking back I've had some definite "remission" periods, as well as different cycling patterns.  Currently my pattern is pretty close to two weeks high, two weeks low.  Of course lots of other factors change how I feel (the temperature, stress levels, activity, and this darned cold, for example!) so I can never really gage how I am going to feel or what I will be able to do on any given day.  It also makes diagnosis and testing that much more complicated and difficult.  Because my test results also show the varying ranges.  I've had low cortisol tests, lots of normal tests, and a handful of abnormally high tests.  The latest one was a doosy! 

It is becoming obvious following much testing that I in fact have Cushing's disease (there was a high suspicion to begin with due to my plethora of Cushing's-specific symptoms, especially at such a young age), but I still have to accumulate a sufficient quantity of biochemical proof (ie, lab tests) before a neurosurgeon will preform the delicate surgery to remove microscopic tumors from such a vital glad that happens to sit right smack dab between the carotids!  I'm at least half way there on the necessary lab results...maybe much closer (still waiting on 3 tests and resuming testing again perhaps tonight or tomorrow). 

http://www.eje-online.org/content/157/3/245.full

Why is diagnosis difficult and slow? Why do you have to do so many tests?

For those who ask why diagnosis is taking so long and why I have to do so much testing:  

This article explains why hard it is to diagnose Cushing's: there is no one good test...all produce both false positives and false negatives, and thus you have to get multiple "high" test results in more than one area (and the higher the better!).  Each person's own body seems to show highs in certain tests and not in others as well.  For instance, I've had 2 high serum results, 1 high 24hr urinary free cortisol, and a second high 24hr urine 17 ohc level, but I have yet to get a high salivary result!

 

http://www.healio.com/endocrinology/adrenal/news/print/endocrine-today/%7B6224334E-508C-4B90-A1F1-D1D8CCD9E68D%7D/The-difficulties-of-Cushings-syndrome

Getting close to my official diagnosis!

I've had some testing come back and one was a really good high!  My 17ohc came back at 9.3 mg/24hr when the range is 2-6.  Still waiting for three more tests results.  It is SO HARD waiting.  So far it has been a 4 week wait on results!  I want to test more right now (starting a high cycle again) but am a little worried this residual cold might make them a waste of time and money.  If I do test, it'll be another month before I know, sadly.

The other good news is that Dr. F reviewed last year's MRI and he agrees with the neuro-radiologist.  He sees 1-2 tumors, says that I need my MRI repeated, and that the new one should be read by a neurosurgeon.  BIG NEWS!  He also sent me the order for it. 

Sooooo, Britt and I are planning a trip to the LA area for mid-September to get my repeat MRI.  (An MRI center there has the best rates on these specialized MRI's to the point that the difference in travel costs still saves thousands!)  Since we'll be there, I'll also be hitting two birds with one stone and have scheduled an appointment with Dr. F.  I'm *hoping* I'll have enough testing completed for an official diagnosis by that time, so the appointment can be spent looking over the new MRI and discussing my neurosurgeon options.  Actually, I'm hoping to discuss that either way!  Because the recovery from surgery and this disease is so long and difficult, I want Britton to be there to ask any questions he might have and hear things first-hand. 

Here's to hoping for a diagnosis soon!  PROGRESS!!!

Reading an MRI

A friend's neuro-radiologist read last year's MRI for me as a favor.  AMAZING, huh?  They're friends and apparently he's awesome like that.  Alfred apparently got a bad rap, and probably nothing more than an annoying polyp.  But, he says my MRI is anything but normal with "suspicious" areas, "abnormal dynamic uptake" (meaning the contrast dye wasn't absorbed in a "normal" fashion), and some micro-adenomas that he even used arrows on the photos to indicate so someone like me can know what he's talking about.  He suggests I repeat the MRI (which again can't be done locally) and to have a neurosurgeon read it.

They are tiny small, but Cushing's Disease is often caused by tiny little tumors no larger than a pencil-tip. Some 50% of proven Cushing's tumors aren't seen on MRI, so the fact that we now have a "target" is great!  A repeat MRI and more biochemical "proof" they are problematic (ie, lots and lots of lab tests) and I can get an official diagnosis and move forward to surgery.

Here are the five pictures he sent back with his comments about them:

 

 

The arrows indicate the hypo enhancing spots on the dynamics (first two pictures).  The [third] picture is a spot that he said is “very concerning.”  Then there is a post-enhanced hypo-enhancing spot where it doesn’t belong (ie, there is an area that didn't absorb the dye like it should, which is common with these type of tumors).  The side view shows what could be tumor, but it could also be a juncture spot. 

I made the pictures with arrows larger since they turned out pretty small on here, so it is hard to see.  To start, look right under the center of the brain for the white blob (from the side) or arch(from the back) that is the pituitary, surrounded by black arteries, etc.  That little blob/arch is where you'll find the arrows.

Cushings Disease - Rare Disease Quick Facts

Click on the link above for some brief and simplified information about Cushing's Disease, it's symptoms, testing, and treatment. 

Meet Alfred!

These aren't all the best pictures to show Alfred's size or how he might be compressing the pituitary (or deviating the pit stalk), but they are the ones you'll be able to most easily identify Alfie in.  All pictures are during contrast injection, with Alfie being the big white blob under my brain, in the center of the pictures.  Click on the individual pictures for a closer view.

Alfred is in the house! (Er, sphenoid sinus?)

I had a dynamic 3T pituitary MRI over a year ago.  The report contained a large paragraph going into lots of detail about everything that was "normal" in my head.  Then at the end there was one somewhat indiscernible sentence about a blob in my sphenoid sinus.  I'll quote:  "There is focal mucosal thickening versus inflammatory ball of debris, retention cyst or polyp involving the posterior wall of the sphenoid sinus and also the roof of the sinus underlying the sellar floor anteriorly."

A google search of those terms brought back nothing understandable or related.  At the time, I could barely identify what a pituitary looked like on an MRI, and I didn't know how to work the program that of the MRI disc to even be able to switch from one picture to the next within each series of "slices."  I didn't even know what questions to ask, and the report said nothing of it's size, either, so when my Endo said that the MRI had come out clear, I have a sinking suspicion that he read the report and didn't look over the scans himself.  (Apparently he only does that prior to a full appointment, and not prior to a "drive by" call or email.)  I assumed he had looked at it and deemed the report accurate and my scans "clean" of problems. 

Well, fast forward to this week.  I've learned a lot more about cushings, which symptoms indicate highs vs. lows, testing protocol, and yes, even where a pituitary is on an MRI.  I've also made a number of "Cushie" friends online, one of whom LOVES reading MRI's the way I love reading fetal ultrasounds.  LOL!  She had her pituitary "fileted" about 6 weeks ago after a long battle to get herself diagnosed with Cushing's Disease, including 3 MRI's of her own.  She's also a computer gal, and took me on a guided tour of my head.  Yes, there IS a brain in there!

The polyp/cyst (a blob, really) is VERY obvious.  It is in the sphenoid sinus directly below and against the sella turcica that holds the pituitary gland.  It quite literally looks like I have a second pituitary that my actual pituitary gland is sitting on top of!  It also appears as though it is causing my pituitary to sit off-kilter, possibly skewing my pituitary stalk (the bundle of nerves and blood supply to the pituitary). 

When viewed pre-contrast, it is the same grey color of the pituitary gland.  In the scans taken during contrast uptake (ie, WHILE it is being injected), this blob lights up like a lightbulb --bright white and fairly uniform.  Meaning that it has blood supply, and possibly that it is more fluid than solid.  The "after" contrast pictures, the pituitary looks more white and the blob has returned to a mostly grey color again.  It is very obvious and quite striking! 

I've emailed my endocrinologist about the MRI.  It may or may not be causing my problems, but the chances sure seem good!  I will likely need a repeat MRI again anyway (which my endo has already suggested) since it has been over a year since my first.  I'm hoping to get this months' lab results first, then maybe schedule a telephone appointment with him to go over the MRI and labs, and make plans for what to do next.

I've done about 7 labs this week, and will see how many more "high" days I get next week.  Hopefully the results start coming back more conclusive with more highs results than normal ones.  I'm a bit worried that NORD is going to be shocked at the number of tests I'm pumping out in a month, but I think I've about got this down to a science (tracking symptoms and testing on highs) so hopefully it will be fast and furious on the testing front instead of doing a few tests a month for months on end. 

We don't know what this blob is.  We are (Britton and I), hopeful that it is indeed separated from the pituitary thus making pituitary damage from surgery far less of a risk, but also hoping it is the cause of the problem (causing pituitary compression) and can now be quickly identified as such and removed.  It doesn't act/look quite like a micro or macroadenoma, so we're hopeful it really is a "polyp" of some kind and not anything tumor-related that might grow back again. 

I've named my blob "Alfred," and regardless of it's accuracy, he will be blamed for everything until future notice!  ☺  I won't welcome you, Alfred, because you are certainly an uninvited guest, but I'm glad to know "it is all in my head" after all!  I hope you haven't put on much weight this past year, and expect you to start paying me some rent, ya loafer... 

Saying "No."

Customer Service Announcement: 

If I tell you I won't do some "little" favor for you, please know that I'm not being inconsiderate or rude and that I do care, it is just that I am trying to put myself and my family first.  Something "little" to a healthy person can be a herculean task to someone with debilitating illness.  I don't have extra to give, but I would if I could. 
On my "low" days, simply standing up can drain my energy reservoir as if I'd just walked a mile.  And even on "high" days, I am running on sub-optimal levels and generally have to play catch up for what went undone during my "lows," or (heaven forbid) try to do something fun for myself or my kids. 

I'm trying to learn how to set boundaries and realize my changing limitations, which is hard for someone who doesn't know how to say "no."  I literally feel guilty telling people I won't help.  I don't know why that is, but it is.  And saying "no" is even harder when the people that know I am sick don't recognize my limitations and keep asking more of me.  I feel guilty when I do use energy on doing something for myself, or having fun with the kids now and then.  We can use an example from this week of going to the 4th of July parade.  It was technically "unnecessary" to spend that energy, even if it was for a good cause (ie my kids, who don't get to do all the things kids with healthy, active parents get to do).  Friday I can try to recouperate some, but we'll have to clean house because it didn't get taken care of on the 4th.  Then Saturday is the farmer's market that I've agreed to be a part of and already invested time and money in.  The set-up and vending will take almost the entire day for me.  This is a good cause, something I enjoy, and helps bring in money...yet can also be viewed as unnecessary.  So if Sunday rolls around and I'm too exhausted to attend church, I will feel guilty and force myself to go when I physically should not, and when doing so could cause a cascade effect of further lack of energy, getting even more behind, etc.

So please, STOP assuming I'll do some "little" thing for you, and PLEASE stop asking.  I don't know if I'll be able to say "No" but I can tell you now that that should be the answer. 

Please help!

Dawn has had Cushing's for 20+ years. One failed brain surgery later & she now needs a life changing operation to save her life.  If you are able to donate towards her surgery, please do so here:

https://www.giveforward.com/fundraiser/qzl2/help-dawn-finally-defeat-cushing-s-disease

NORD Approval

We got some amazing news this week!  NORD, the National Organization for Rare Disorders has approved my application for the Cushing's Syndrome Assistance Program that mainly helps pay for the testing leading to a diagnosis of Cushing's Syndrome.  This means that they will cover all "reasonable expenses" for testing, doctors appointments, and travel for testing and doctor appointments related to the diagnosis and treatment of Cushing's.  Of course it is for as long as they have funds to do so, and the approval is good through the end of the year at which point I would have to re-apply.  This is such AMAZING news!  Britt called to tell me the news and read me the letter as I stood there bawling in Wal-Mart.  So then I had to call my mother and tell her the news, and bawled some more!  I'm sure I scared some shoppers that day. 
I still haven't found out all the details about how it works, but I know that anything over $5K (for individual expenses) has to be pre-approved, so an IPSS is probably out but an MRI *could* be in depending on where I go (Prices for the 3T dynamic MRI ranged from $2K-$8K depending on the location).  It also means that I don't have to wait and do just one or two tests a month because that is all we could afford out-of-pocket.  It will GREATLY speed up the diagnosis process, so I hope I knock out some high results this month!  Things are looking up!  Dr. F also gave me the go-ahead to test as many times as I want, so depending on what NORD feels is reasonable, I might have my diagnosis in just another couple months!  (Some of the tests take a few weeks to get results, and I am not sure just how many I have to get back as high before he is confident enough to make it official.)

Grief and Diagnosis

I posted this in response (slightly edited) to someone on facebook, who felt strange that after years of fighting for a diagnosis, was upset and fearful about the tumor on her pituitary:

I'd imagine that diagnosis is a lot like grieving, in a way. Think of the way having a loved one die unexpectedly is so much the same and yet so different from knowing a loved one has a terminal illness. You know death is coming and you are living through it slowly. In the first, everything hits you all at once and is overwhelming to the extreme. The latter is still overwhelming but you tend to suffer through it slowly and in stages.  Still, everyone does it differently. When death finally comes in the latter, it can still hit you as hard as if you didn't know it was coming, it can be a relief (that their pain is over, for example), or it can be bitter sweet. Diagnosis for us is in essence a finalization of the "death" of the healthy person we once were. We may have known it was coming and expected, even wanted and fought for it, but it is still a big, messy, emotional life event.

Short term fixes cause long term problems

I've been asked twice in two days if I'm being given cortisol to balance out my low days, so I feel the need to explain in case anyone is interested in reading.  I've actually had one MD offer to do just that. In the short term I'd love it, honestly.  On the days when my pain and muscle weakness are at their worst I wish that was a reasonable option. When I'm physically and emotionally worn out and life feels so hopeless, when I see the long road of recovery ahead and haven't even hit the official diagnosis yet, I can feel desperate. 

Of course I wish I could function, wish I could be happier and do all the things I miss so much. But it is like my little secret "back up plan" that I haven't dared to tell anyone about till today, because I know how stupid it is.   

 My high cortisol days do allow me to function better, but they are by no means normal or healthy and have their own uncomfortable symptoms. It is the high cortisol days that are destroying my body's organs and systems, and left untreated, will ultimately kill me. Taking steroids when my body is producing too much would speed up the decline and increase my odds of permanent organ damage. It is because of the high days that I get the low days, as it is suppressing my pituitary function. To take cortisol would further suppress my pituitary, making a long-term cure nearly impossible to achieve.

If there were no chance for a cure, then maybe trading years of slowly dying for a few good months followed by a speedy decline would be a worthwhile option.  I cannot trade my entire future for a few months of mediocre improvement, because that is exactly what I would be doing...and because I hope for so much more.

I am glad that this woman is still fighting, and that she has her mother there helping her do just that.  I am amazed to hear that her doctors suggested she quit school because of the drain on her physical and mental abilities from the disease.  Very true (about the effects), but it is the first time I've heard of doctors suggesting that to someone struggling with the disease.  Interesting indeed.  It may just be that people don't share that part.  I've been told no strenuous exercise and eat more salt. LOL  But we usually hear most about the doctors that don't get it telling patients they aren't sick (despite tests proving it, even) and should just diet and exercise.  Kudos to this girls' doctors, regardless of whether I agree with telling her to quit school, they seem to "get it" and are invested in her health.  http://www.blueridgenow.com/article/20130503/ARTICLES/130509945  I hope her last treatment sends her into remission for good...a CURE for her.

Aint that the truth!

Found on the website above, hopefully she doesn't mind me posting it giving her credit. 

Second Opinion

Someone posted this to a Cushing's site the other day.  It explains a little the difficulty and length of time getting a diagnosis, some of the effects of Cushing's, and a little about surgery and recovery.  I LOVE that this Endocrinologist is wise enough to use the term "Remission" for Cushing's patients.  I've often wondered if the statistics give for "cure" rates were similar to that of Cancer --meaning 5 years post-op, and it they are actually accurate.  Regardless, 40-60% aren't fabulous statistics.  No wonder many are turning to a bilateral adrenalectomy after a recurrence of Cushing's.  I would certainly rather replace adrenal hormones for life than to be one that has to replace all the pituitary hormones for life due to too much pituitary damage from surgery (or repeat surgeries, or even pituitary removal).  Still, I wonder what the incidence of adrenal rest tissue is...  May have to look into that one at some point, not that it applies to my situation yet.

Testing resumes

Well, I've come up with a bit of a game plan.  Hopefully all will work out as planned, but I'm aware that it rarely does and trying to keep an open mind.  ;)  I contacted Dr. F's office (my endocrinologist) asking whether I had to have another appointment to resume my testing for Cushing's Disease.  To my amazement, she forwarded it right on to Dr. F who then sent me lab requisitions to do just that. 

I haven't started the testing just yet.  I've been tracking my symptoms, trying to get a handle on what signals a "high" for me and what signals a "low."  I've started tracking my blood sugar (a sign) as well because some people have normal readings on low days and diabetic-like readings on "high" days.  It is also common, I'm reading, for people to confuse a high and a low and actually get them backwards.  I'm starting to think that is exactly what I have been doing!  I feel like I've been in a prolonged low since I've started watching, but only time and further data will tell.

Here are some of my endocrinologist's words on a page about how to do a specific test:

"If you have cyclical or periodic Cushing’s disease, it is often challenging to determine what days are good “test” days, especially when you, the patient, is us...ed to feeling pretty crummy most of the time. The salivary testing process, particularly in cyclical patients, can be time consuming and frustrating.

If you are feeling nauseous, tired, achy, or slightly depressed, you may not have a
positive testing outcome. Instead, pick an evening where you are feeling awake after
dark. If you are experiencing bloating, acne, anxiety, irritability, weight gain, are unable to sleep and feeling manic you will probably have a more favorable outcome. Some people find that testing when they feel highly alert works, while others find it best to test when they are feeling normal. It may take a while to learn your cycles, so do not be discouraged if you do not produce positive results right away. It often takes people weeks or months to accurately diagnose their cycles. For this reason, we suggest keeping a diary of how you feel when you do each test. In this way, if we get an abnormal result, we can ask you to do further testing at times when you feel the same and perhaps expedite getting more abnormal results to back up your diagnosis." 

 

Here is a world-renowned specialist validating my experience and encouraging me to have patience and continue pushing onward.  So that is what I will do!  Push onward to a diagnosis, then on to finding the specific cause, then surgery, then recovery and hopefully remission!

An Excuse

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...

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.