Cushing's recovery expectations

I was speaking with a friend yesterday about trying to balance maintaining a Cushing’s patient’s hope for the future, while at the same time giving them realistic expectations. Diagnosis is often such a long road that we hold on to treatment as our source of hope to get us through all of the losses, judgment, struggle and waiting it takes to get there. We naturally start to view surgery as the end, because it has been our goal for so long. We can imagine we will quickly go back to normal, lose the weight, gain energy, regain strength, feel well, return to our pre-Cushing’s emotional and mental states, be able to keep up with our age-peers, etc.

While that isn't a realistic expectation, none of us want to take away the hope that is keeping someone afloat. If you have Cushing’s, you need treatment. No ifs, ands, or buts. The longer you wait, the more permanent the damage becomes. But even for those who do get the most positive outcomes, they often have to go through months (or a year or four) of pain and recovery post-op to get there. It isn’t easy. You may not feel like you are improving. You’ll wonder if life will ever get better...But it does.Often it is so gradual that you only see it in hindsight, but still it does. You may not get 100% back to where you were, but you’re able to work, cook and clean, exercise, and enjoy recreational activities again.

That’s the best case scenario and many of us honestly don’t get that. Many require more surgery. Many are left with permanent damage from the Cushing’s, it’s treatment, or both. We have to come to terms with our new “normal”, which can be quite hard (still working on that). But even being on that short end of the recovery stick ourselves, we believe it was worth it. We will help fight for your future. Cushing’s will take and take until there is nothing left. If stopping it in its tracks is THE BEST we can hope for, it’s a hope worth fighting for. The harsh reality is that we’re all gonna die in the end either way, so you might as well try to get a better life in the meantime.  We know the costs because we’ve paid them, and we’re telling you, as hard as it is right now, as hard as it may get, your future is worth it. You are worth it. We are worth it.

Digging deep - Depression, anxiety and suicide.

I remember after my father died unexpected, people wanted assurances his death wasn't a suicide. It was accidental, but as a 13 year old girl who had just lost her father, getting those questions from family friends and acquaintances really struck me as odd. As if it was our job as his mourning family to spread that specific news? As if that would somehow change everything? Why did they feel the need to know, or even think it was okay to ask?  I don't have the answers, but it still strikes me as cold and wrong.

I have since lost a loved one to suicide. At the time we were both fully-immersed members of a religion that basically equated such acts with murder. I knew in my heart even then that such a stance was devoid of empathy, charity, and love. I don't believe suicide is a positive choice by any means...I know well the added sorrow, questions, and burden it places upon those left behind because I have lived it. I don't know how I survived his death, frankly. But I also don't think of myself as stronger or less "selfish" than him -what horribly judgmental and arrogant thoughts.  Instead, I choose empathy. I recognize those who take their own lives as people just as real, strong, fallible, complex and human as myself and I ask, what would it take to make me cross that line?  Where death becomes more of a gift to myself and to my loved ones, so much so that it overpowers the pain. I think of the amount of physical, emotional and mental suffering I have endured, and I am in awe at their strength. I am grateful I haven't been pushed to that extreme. I can scarcely imagine what amount of pain, haplessness and hopelessness they felt, which far exceeded any I have known. I ache at the thought that they suffered so much and I pray death has truly set them free.

We lost a young woman with Cushing's to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing's is at fault.  Cushing's led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, "most morbid of diseases" and why I feel the way I do.

Last weekend I attended the Adrenal Insufficiency United (AIU) conference in Kansas City.  While there I had the privilege to again hear Kyle Gillett, PhD, LMFT speak about mental health with regards to chronic illness.  He shared some telling statistics gleaned from studies:

You'll have to excuse my poor-quality cell phone photo.  But can you see that first line?  That's another blog post all-together (must remember, must remember). But do you see what comes after that?  The statistical risk for depression and anxiety in the overall population are 9.5% and 18.1% respectively.  Chronic illness' risk for mental illness is 28%.  In Cushing's?  It rises to 50-90% risk for depression and up to 79% risk for anxiety. My guess is the overall risk of mental illness in Cushing's is 100%.  He did share some statistics that showed those numbers dropping over time in people in remission.  But back to those numbers.  Why is the incidence SO high in Cushing's?  That could be a very long answer.  Lack of understanding and support from family, friends, even (and especially) doctors and health care professionals.  Ostricism, judgment, blame, lack of restful sleep, muscle loss, extreme fatigue, on and on and on.  But, I'll share another poor quality photo in the hopes you can make out more than I can of what psychiatric symptoms Cushing's patients experienced.  I SWEAR one of those says "Dragons" and I am a bit miffed I was left out of that loop...

(As an aside, while it says the study was quite small, please note ALL studies on this rare population are small...to the point they have to keep expanding their inclusion criteria to get any useful, measurable data at all.  We are not only rare but also extremely diverse.)

So, that's quite a lot of issues, and I personally don't think it even begins to cover the gamut of symptoms we truly experience. "Increased Fatigue" was universal, which is big, but another limitation of those clinical words is that they don't give any understanding of the depth and breadth of what that means in real life, in real people.  So to help with that, I am going to discuss another study I've mentioned in posts past, that compared "Health Related Quality of Life" between those who had Cushing's Disease, Multiple Sclerosis, and those who had Cancer and were undergoing chemotherapy.  As I said in those posts, deadly and debilitating diseases are all crap and I don't care to differentiate which smells better.  BUT, while many can't relate to Cushing's and what that entails, Cancer and chemotherapy are far more universally understood and recognized, so by comparing the two hopefully I can help you get a more tangible idea of the effect Cushing's has on a person's health and quality of life.  So, do me a favor and think of what you know of cancer.  Think of what you know of chemo.  Picture in your mind the toll it has on someone physically, mentally, and emotionally. It is hard. It is cruel. The disease AND treatment wreaks havoc on your body, while simultaneously wreaking havoc on your mind and emotions. 

Now consider that Cushing's HRQOL actually scored lower than that (though higher than that of MS). Does that help give some perspective? Now imagine going through all of that for years while your friends, family, doctors, acquaintances and strangers not only don't offer support or help, but actually criticize and blame you for it all, deny your experiences, and turn you away.  Imagine finally getting answers and a diagnosis, going through treatment (for me, brain surgery -no small thing), and spending roughly a year or more in recovery (best case scenario).  Those same people expect everything to be normal a few weeks after surgery, when you try to explain their expectations are wrong, they call you "negative" and suggest you're wanting a bad outcome.  When, inevitably, their false expectations are not realized, they react just as before...withdrawing support, adding blame. 

Now, what if it wasn't an ideal outcome (it rarely is), and you either weren't cured and have to go through the whole process of diagnosis and treatment again (this time at even greater risk), the treatment itself left you with a debilitating and life-threatening illness such as Adrenal Insufficiency or Hypopituitarism (trading a deadly and untreatable disease for a deadly yet manageable one), or you went into remission and went through all the work of recovery only for it to return a few years later.  And yet still, that's the response you receive from those around you.  It is heartbreaking.

"Cushies," as we call ourselves, are reporting feeling anger, guilt, shame, and rejection. Shocking?  Not so much. Statistically, 1/4 of those in remission at a year post-op STILL suffer from depression.  That is still more than double the rate in the overall population.  Imagine what the rate is for those not in remission, or in remission but with a new life-long disease replacing it? 

Beyond the emotional response to all of what we are going through, there is an actual, physical, biochemical reason we are prone to mental illness.  Everyone is familiar to some extent with the labile emotions that come with puberty, PMS or  pregnancy, so it shouldn't be a stretch to realize that fluctuating hormones can have a very real effect upon our emotions. To paraphrase Dr. Gillett, "They play an important part in the regulation of our moods, impacting how neurotransmitters work, and having a direct impact on psychological and emotional function."

Dr. Gillett then went on to discuss trauma and Post Traumatic Stress Disorder (PTSD).  He stated:

Stressors + Powerlessness = Trauma

He explained that minor stressors can have the same effect on the brain as major ones, that the brain's "Fight, Flight or Freeze" response is still triggered, as the brain doesn't differentiate quality/quantity well in the moment.  So, especially over time, repeated small triggers (even emotional rejection, minor physical pain such as a blood draw, or the stress of having a doctor's appointment) to that part of the brain can lead to PTSD just as much as a single, horrifying event can. That it in effect "trains" our brain to respond to stressors as if we are in danger, strengthening those neural pathways till the response is almost automatic, and leading to symptoms of PTSD.  I can personally attest that this is true, and have discussed it in a bit more detail in previous posts as well.  IF you are experiencing this, please know there are some methods that have proven effective to start changing this pattern, and rewiring your brain to help lessen that traumatic response...Therapies such as Dialectical Behavior Therapy and Eye movement Desensitization and Reprocessing, or Cognitive Behavioral Therapy to name just a few.  He did state it is important to find someone with experience in treating trauma, but that the number one factor that influenced whether therapy was successful was the relationship you have with your therapist, not the specific methods or even specific types/levels of experience they have...it's whether you trust them and feel comfortable with them.

So, lets go back again and imagine all those physical symptoms someone with Cushing's is experiencing, and the mental and emotional toll those alone take. Imagine all the emotions. Imagine being broke from all the medical costs. Imagine the sheer amount of stressors and feelings overwhelming you, never giving you a break. Imagine it hitting your mind repeatedly as actual trauma. Is it really so hard to understand a desire to end that suffering?  Regardless of how much a family loves and supports someone through all this, can you comprehend them feeling they are a burden on their family?  Can you understand now, why I would blame Cushing's regardless?

Damn Cushing's.

Damn it for what it does to us and to those we love.

If you are feeling overwhelmed or desperate, please reach out. If you don't feel you can seek a professional, there are SO many of us online, in facebook groups and on web pages, that truly do empathize, understand what you're going through, and want to help in whatever way we can. It isn't your fault. This disease may have taken much, but it cannot take your worth. 

You are not alone. 

Another loss, just as Cushing's Awareness Month starts again.

Shianne Lombard-Treman passed just three days ago. She had a form of Cushing’s Syndrome caused by adrenal tumors, and I am in remission from Cushing’s Disease caused by a tumor on my pituitary. My heart aches thinking of Shianne and all those we have lost in the last few years. Today marks the start of Cushing’s Disease Awareness Month (and Adrenal Insufficiency Awareness Month - a common result from Cushing’s treatment). I had not committed myself to the annual blogger’s challenge, but the overflowing tears while I watched this video make me wonder if I should...

I am sad to know that like many of us, Shianne still suffered physically and emotionally from the toll this disease and it's treatment took on her body.  But while my tears flow watching this video, I can picture her dancing with joy, free from sickness and pain.

My heart goes out to her family and loved ones.

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.