Calories In, Calories Out

Last week someone was explaining to my son the “calories in, calories out” theory and I had to interject “Unless you have Cushing’s.”  They looked at me oddly and just moved on. I understand the theory, but I’m pretty sure we’ve disproven that one many times over.  And hidden in those words is a personal history of decades of blame and shame. Its a simple choice, right?  Eat less, eat better, and exercise more and you'll be healthy!  I wish. I don't want my children learning that those who are fat or sick made the choice to be that way.

Few who are obese are without some underlying condition -be it insulin resistance, depression/anxiety, eating disorders, autoimmune disease/treatment, neurological damage, or a myriad of things including my personal least-favorite, or a tumor. We are SO judgy and make so many assumptions when it comes to weight and it is not okay. What is worse is that the medical community does it just as often. 

It is NOT normal to gain 1.5-2lbs *A DAY* for two weeks straight, then lose .25-.5 lbs in a day for two weeks straight WHILE your activity and diet are stable, and then repeat that cycle month after month. It wasn’t poor diet, overeating, laziness, depression or low vitamin D. It was a tumor in my pituitary causing excess cortisol in roughly two-week spurts, causing a deadly and debilitating illness called Cushing’s Disease. I had brain surgery and am now in remission, but because of the damage done by the disease and it’s comorbidities, the 15+ year delay in diagnosis and treatment, and the complications of the treatment itself, I’m still not “well.”  I still have to make constant adjustments for my health, having to rethink my goals, plans and activities on a daily basis. 

The reality is that nobody feels good being fat. We all wish we were healthy, skinny, physically able, etc.  We ALL know the theories and practices behind weight loss. Few are too lazy to make that effort. Most of us have spent years, decades even, fighting against it and seeking health. Some of us do all we can towards the desired changes to no avail. Maybe it’s time we start assuming weight gain is a symptom instead of the disease, and respond with empathy and support.

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.

Community - AIU conference

A memory from January 6th, 2015 popped up on my facebook feed:

"Hooked up for my stim test, sitting in the infusion center at Swedish, IM injection in, first draw in 5 min! Only 4 more hours of this...I'm told it won't make me feel bad for an hour or two, so here's hoping for no nausea and severe gh deficiency!"
There were a great many responses.  But what struck me most was that 36 hours of nausea and headache later, and I still hadn’t realized it was adrenal insufficiency causing it until a friend shared her experience of the GH stim sending her into adrenal insufficiency (AI).  A full day later.  I knew it could in the recesses of my brain, but my doctors and the infusion center nurses didn't make mention of it at that time.  Nausea is VERY common with the test, even without AI.  So when I walked on the plane the next evening to fly home, and simply the little bounce while walking made me feel like I was going to throw up, it finally hit me "This isn't normal."  And I applied my friend's experience, stress dosed some hydrocortisone, the nausea disappeared and I had a good flight.

Community is so important. This is yet another example of patients helping keep each other safe. This is why I feel so safe at medical conventions. These are my people.  They get it. I can’t tell you how many times I’ve been helped, helped others, or just witnessed it. And the friendships I’ve made at a brief weekend conference like this have helped keep me sane year-round.

I'm so excited to get to see old friends and meet new ones, to again be able to be away from home and yet feel that I'm entirely safe in my own skin.  

https://aiunited.org/conference-on-adrenal-insufficiency/

Don't be an ass - Blame and Judgement

AIU's conference is coming up and Dr. Gillett is speaking on mental health.  I've attended a number of his sessions at Magic Conventions the last few years, and often come away with some tidbit of knowledge, understanding, or even practical skill that has proven invaluable on my journey (Mindfulness breathing FTW!).  Back in October a question was posed to attendees asking what would we like him to speak on...if there were any specific issues, etc, we would like addressed, and here is an edited portion of my response at that time:

"I'm currently thinking 'acceptance' is a big one for me, personally. In many ways we HAVE to accept our new normal to be able to cope with the day-to-day in realistic and healthy ways. Things go SO much better if I am realistic with myself about my limitations.  Yet there are so many conflicting voices saying to accept your limitations = giving up.  Another conflicting voice is the idea that expectation leads to disappointment. But I also can't seem to stop expecting more from myself and setting expectations that are too high. And it is even harder when that seems to be an ever-moving target (what I can do, how I will feel, and there isn't necessarily any pattern or warning involved to help me plan for that, either). I think I understand where both perspectives are coming from, but how do you reconcile all that?"

And, I left it there.  I've never made any headway into understanding how to reconcile those opposing statements, where all seem true and appropriate at some level, and all are also passing judgement at some level.  But it came up in an unexpected way today...A friend is learning healthy ways of coping with mental illness (I'd rather class it as "neuro-atypical" than "illness" but for clarity I'll leave it as it stands), and is working to overcome addictions she picked up (as unhealthy coping mechanisms for the same) and she has been writing her progress on a blog and sharing the links to facebook.  A bit of encouragement for herself and others, sharing of learned understanding, some sharing of practical things that have helped her, of healthy habits she is choosing, and a bit of journaling.  She posted today that someone told her she is "addicted" to facebook and being selfish and self-centered in doing so.  I just do not have words.  A total lack of empathy.  If you don't want to see it, move along.  YOU are being selfish and self-centered, Asshat!  Anyway, my very hot feelings towards this unknown person aside, as I was responding to her (and the asshat's judgment), I  shared some of my own experience and how healing/disease can make you appear selfish and obsessed to someone who cannot understand what is required in that situation.  Then I realized I needed to take my own advice.  

Some of what I shared is that I've come to learn you are judged as wrong no matter what. That people will blame you for your situation no matter what.  I repeat, no matter what. Some infer it, with the pretense of kindness, and others will flat out tell you. Whether you fight to eradicate the disease, if you accept its limitations and focus on coping, or if you give into it...Others will always find a way to judge your actions as wrong, your choices as wrong, and to place the blame for having to even make those choices solely on you. I've been through enough of those iterations now to know that someone who judges and blames for one, suggesting you do another, will just switch to judging and blaming for the next as well.  So really, that response is a given.  I'm still shocked how commonplace and acceptable it is in our society to be so forthcoming with the blame and judgment.  I KNOW it is also cliche to say you shouldn't let others' opinions affect your choices, but I didn't grow up that way.  I actually grew up with every decision being criticized, being blamed for my own emotions, for others' actions, and then criticized for caring about criticism and being indecisive.  So not caring what others think doesn't come naturally to me.  I do care what people think of me, how they treat me, and what they say about and to me.  I get hurt by it.  But, the cliche still rings true.  If you are going to be blamed and judged no matter what, then blame and judgement logically doesn't matter any more in the decision making process.  In taking my own advice then, I should do what I feel is right for me, confident in the knowledge that that outcome will be the same.  LOL  The difference? Which choice can I live with? Which do I feel I can accomplish? Which option speaks to me? I don't do guilt well, so which “blame” can I live with and throw off as "false" most readily (that's an odd one, I'm actually too idealistic to decide based on that, but I wish I could!)?  Some might say that is a pessimistic view.  I'd say it is a realistic one.  But, depending on how you look at it, it actually can bring more optimism into the decision-making process.  Now it isn't about the nay-sayers; It's about the good, the positive.

 So I am now taking my own advice and saying "To hell with all the blame!" and am putting myself out there, letting you know I am not physically doing so well.  I'm trusting you with my truth; Please don't abuse it.  I haven't been well for over a year now.  I have avoided telling more than a few of those closest to me because I didn't want to go through all of the judgment and blame again.  I didn't make that up before.  It wasn't atypical, it was constant and overwhelming.  I didn't "dwell on the negative" and refuse to forgive people's good intentions gone awry (as I was constantly told).  I did my best to be kind and compassionate in response, to brush it off, to try to see *and feel* that they meant well, and to not let it get to me.  But the reality is, when you most need support and are at your most vulnerable, it hurts to instead receive harm.  DAMN does it hurt.  You can't always be the strong one.  You can't always ignore everything that comes your way.  WHEN is it someone else's turn to be responsible for their judgment, words and actions?  When I was least able to deal with it is when it was dumped upon me the most.  I didn't need that then, I didn't this past year and a half, and I don't need it now.  Elias was diagnosed with an increasingly debilitating and fatal illness last fall to boot.  I just didn't have the energy to waste on rude comments about my health (on top of the ones about his diagnosis too, when I again needed support).  Shutting off that part of my truth meant others couldn't even try to meet those needs, but it also saved me a lot of potential hurt at a time when I had no extra to give.  It was kind of like a calculated risk at the time, but I didn't quite recognize I was making it, or at least that I had kept it up when it wasn't required for my coping anymore.  I know putting it out there will mean more blame and judgement, and I don't want that at all.  But I'm also more able to stand up for myself now, and to recognize emotional abuse and manipulation for what it is.  If you make a habit of refusing to take responsibility for your actions, there will quickly come a point, perhaps without warning, where I will be done allowing it.  I am not here to be a martyr for you to pummel.  I have enough crap to deal with without having more thrown at me; I don't have the patience for it anymore.

For those who have read this and are still here. again, I thank you with my trust.  As I said, the exhaustion and fatigue returned last Summer.  I had had a miraculous healing (my thoughts about that then/now aside), and had been off my hormone replacement medications entirely for some time.  I was able to move here to Missouri with 6 kids while my husband stayed behind in Alaska to finish his work season, complete the remodel on our house, and sell it.  I had to cook, clean, shop, weed whack, plant, build a chicken coop, take care of a dog and goats, homeschool, etc all on my own.  I wouldn't say I did it well, but I could do it.  And then Summer hit.  I was out pounding in fence posts, weed whacking, and hauling about 20 hay bales to make a garden (in one day), and I overheated.  I drank fluids and gatorade the entire time I was outside and afterwards to replenish, but even so I crashed hard and it was a good week before I could function at all.  Then my mother came to watch the kids while I attended the Magic Conference in Chicago again. Her visit was its own form of a major stressor.  And while I was in Chicago, without warning, I had my first episode of acute adrenal insufficiency in a long time.  So long I didn't even have medication with me.  I was caught off-guard, and had friends not pointed out I was sick and getting worse, I may not have recognized all the warning signs.  Someone helped me out with some saving medications, and I made it home safely.  I decided to dig out my emergency kit from the moving boxes after all.  I couldn't seem to go outside in the Missouri heat again without getting sick after that.  And things slowly went downhill from there.  

Now, I can't actually function much.  I'm still way better than my early hypopit days.  I don't *feel* so sick.  I don't seem to have Cushing's.  I'm still doing so much better emotionally (like a cloud was lifted back then and has remained gone), but the headaches were constant and I reluctantly resumed taking fludrocortisone again this Summer/fall (the salt-retaining hormone).  It helped dramatically.  But I felt like I had failed.  Again.  All those who blamed me for being sick would blame me again.  All the "You're doing it wrong; It's your fault!" statements, even from people I KNEW loved me and wanted what was best for me, would come back again, this time with more ammunition...

Maybe I hadn't actually been healed before.  Maybe I'd done something to no longer deserve it.  Maybe I was faking being healed.  Maybe I was faking being sick.  Maybe it was all in my head.  Maybe I had WILLED IT on myself (again).  Maybe I LIKED being sick.  Maybe I focused on being sick and it was self-fulfilling prophecy.  I don't believe a SINGLE one of those statements. But each one has been made to me, sometimes countless times. I don't know why things happened this way.  I did ask to be well.  All the time.  I don't honestly know why it worked that time.  I didn't ask for the fatigue again.  I didn't fake any of it.  I wasn't even thinking about it.  I certainly ENJOYED my newfound abilities, even if I still wasn't "healthy", still fat, still more fatigued, still had liver damage, still didn't handle stress well, etc.  I could function.  I loved being able to function.  I loved having a farm and being able to go out and do things.  I LOVED singing and dancing around with kids.  I ASSUMED and acted on the belief that I was better, and I really was. I didn't look for it.  I didn't ask for it.  I wasn't waiting on baited breath for the other shoe to drop.  I was fine...and then I wasn't.  I didn't somehow displease God (What an awful God to believe in!). But I had been told that was why I was sick in the first place. Britton has suggested, that maybe my reprieve was a gift to allow us to move and start this new life.  Again, maybe it was part of my "path" and not a "destination", which is a distinction I have missed many times before.   Regardless of the how and why, clearly I have little input on what is.  

I tried to fully eradicate the illnesses, and even while successful in doing so, I was blamed and judged.  I have tried accepting it as my normal and focusing on coping, and in doing so I am judged and blamed.  I even identified with it fully at one point, and was certainly blamed and judged then as well.  So, it seems regardless of my choices, actions, and even my successes in them, I can't do anything to avoid the judgement and blame.  If I knew how to fix it, I would.  I've tried so many things, so many times.  Traditional, unconventional, spiritual, energetic, take your pick. If it was as easy as "eating well" then I wouldn't have gotten sick in the first place.  If it was as simple as "exercising" then the exercise wouldn't have nearly killed me.  So, don't insult my intelligence, willingness to think outside the box, or determination...That won't fly either.  I get it that few can relate to my full experience, I don't expect that.  But we can all relate to someone being an ass, so don't be an ass.

The wrong end of the privilege stick.

There are some things society gives a green light to attack, and unless you’ve been in one of those positions yourself, you typically won’t see how constant and widespread that behavior is. It should not be normal, and when you bring it up, you get treated as if YOU are still to blame and still worthy of judgment. You must be focusing on the few negatives and ignoring the positives, you’re looking for offense, you clearly can’t accept that people don’t understand but mean well, you should be able to ignore it all, or you’re attention-seeking and making it sound more dramatic than it really is.

Living with Cushing’s Disease, it sincerely was the norm and not the exception, and I hated it. Sure it made me stronger, but I wanted kindness, help and support, not a constant barrage of open judgment and blame. I spent so much time and effort trying to educate the people who reacted that way.

But it didn’t work. Those who judged in ignorance still judged in knowledge (if they gained any). Being diagnosed with “the most morbid of diseases” by a world-renowned specialist didn’t change their minds. Having brain surgery didn’t change anything. Brain surgery! They didn’t care. And you know what? Those golden gems who cared and treated me like a human being all along? They still treated me with kindness and respect.

I have this bad habit of mistaking the path for the destination, and that is exactly what I was doing. Educating the judgement away didn’t work, but I don’t regret having tried at all —so many other worthwhile things came from making that effort. I was able to work through and release some of the emotions that came with the negativity I endured. I helped a large number of people struggling along side me. Those golden gems in my life who wanted to understand and help now had a means of better learning how to do so. Most importantly, I let others know they weren’t alone and that I understood, and they let me know the same. Being open and real about the pain and struggles is so cleansing for me; getting it all out really does seem to make room for healing.

Today I received a PM from someone I’d never met or spoken to before, desperate for help getting a diagnosis and treatment for Cushing’s (this time a parent with a sick child). For years this was a daily ,even thrice daily or more, occurrence for me. I was extremely active in the Cushing’s facebook groups as I navigated my own journey of diagnosis, treatment, and recovery.

The process can be intense, relentless, and heartbreaking, spanning years of our lives. For many treatment means trading an untreatable and deadly disease for one that is more manageable, so the intensity lessens but the struggle doesn’t cease.

As our conversation today was coming to an end, this person shared with me some of their pain at seeking help and receiving instead that same judgment and blame. Because what we generally receive from those around us (family, friends, doctors, even strangers) is judgement and blame, these friendships and facebook groups become our safe haven. These people get it. They understand. It is SO uncommon and such a relief. We commiserate but also help uplift and support so we can all gain better outcomes. We’ve figuratively AND literally saved lives, and had ours saved in turn.


*Something I wrote on Facebook Jan 8th, 2018