Happiness: Riding out the storms

I’ve been having a hard time. 

I mean, but it’s also good like any other time. 

And yet it feels harder.

But still...nothing of any significance has changed, better or worse. 

I don’t get “the calm before the storm” ups and downs I’ve heard of my whole life. I seem to live in a storm. If there is calm, it is because I created it despite the storm. 

If you were to ask me how I was feeling 5 minutes from now, I’d probably say I am doing well. And I would not be lying. It is like I am always doing poorly and always doing well, the whole spectrum, all at once. All that changes is what part I look at when judging, what part I focus on, what part...of all my many parts...I share. 

So many aspects of my life, each their own storm, are threatening to be overwhelming at once. Each storm pouring out its various amount of flood waters. 

I am a dam holding back a flood. 

I have no means of diverting any of the water rushing my way to lessen the load (I’ve brainstormed; I’ve tried). And while I don’t believe I am in denial about how stressful and difficult each rain-bringing storm might be, I also try to be positive, to keep moving forward, to enjoy the good in each day, etc. 

Still, holding back the flood is a constant. The water is relentless, always there, no matter how great a day I am having. It seems my ability to push back against the pressure tends to wax and wane. And when it is waning for whatever reason - stress, fatigue, exhaustion, pain, all of the above - any extra little drop can push the flood gates open. Maybe I’m doing well and an extra, transient rainstorm is easily weathered. Maybe one more drop (an unkind word or a reminder of what I cannot do and wish I could) is all it takes today to push open the floodgates. Sometimes it is hard to close them again once they open. So if it ever looks like I am “holding it together”, remember it simply means that today, in this very instant, the flood gates are maintaining. 

Does having this flood watch make me a negative person?  A pessimist? An unhappy or depressed person?  Clinically, maybe. But we don’t exist in a vacuum. We are not perfect. Life is not perfect. The idea that acknowledging the negative is choosing negativity or even being negative is such a lie. It is damaging. 

If we continue to hold to this belief that happiness is the complete lack of the negative, then happiness is forever unattainable. I repeat: unattainable. I don’t buy that definition any more. Happiness is not the complete lack of the negative. If it were it could not exist. And it does exist. But it is far more messy than we tend to acknowledge. Life is messy. You are allowed to be happy and sad at the same time. Is that not the norm? 

I am still learning what I think happiness really is, but right now I would say it is the active choice to continue despite the negative. To continue with the negative. To own the mess, to make it yours, and to make something out of it. 

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

Muskeg Farm Moves to Missouri!

Well, it is high time this blog become what it was originally intended to be: Less about illness and more about life!  So with that, I am announcing to those who haven't found out elsewhere that we are MOVING!

We bought 9 acres in central Missouri at the end of last year and are moving there in just a couple weeks.  We also bought a used trailer, which we will be fixing up, as temporary housing (and a future guest house?) until we get our permanent, larger home built.

After replacing the kitchen and making sure all utilities are running smoothly (more about that below) in the trailer, our priority will be building a small (8 x 12 or 12 x 12) barn and fencing for goats and our Rosie dog (Great Pyrenees livestock guard dog). We've reserved two doelings from a goat breeder local to our property there and they are just the bees knees (haven't met them yet, but I know their lines and have seen pictures).  They're adorable bottle-fed babies and we are all quite excited about them.  Britton's brother and his family are driving over from Indiana to help build the barn and fencing, and to spend Easter Weekend with us.  He has another brother that has moved just about two hours South of our property in Missouri with his family, and they are hoping to join us as well that weekend, but they will be moving from a rental to their own property about that time so those plans are up in the air.  If that, and the house remodel work are completed to a sufficient level at this point, then we have plans to get guinea fowl and chickens shortly after arriving, too.  There is a partially unfinished shed that I'm planning to finish into a chicken coop for birds.  We think we'll also put up some fencing for them, though they'll likely free-range at least during the Summer (or once large enough if we start with baby chicks).  Having that fencing means we can close them in when we go on a trip, or for any other reason.  And, wonder of all wonders, there is a small livestock swap meet just minutes from our home about two weeks after we get to Missouri where we can acquire such birds with plenty of options to choose from!

Other outdoor plans for our property include starting up some straw bale gardening, planting the start of an orchard, starting rows of berries, building a deck for outdoor space, building a fire pit for fun, cleaning up the property, a swing set for kids, maybe a flower garden for the girls, picking a "mining" location for the boys, maybe building a woodworking shed, a wood storage shed, or even starting on the foundation of our permanent home?  None of these things have to happen this Summer, but they are all in the realm of possibility, and that is exciting.

Indoor plans are extensive but the square footage is small and we've done all this kind of work before.  We plan to Kilz prime every surface of the trailer including the layers of wallpaper that can't be removed without replacing the drywall too.  Then we'll cover the walls with a thin and paintable  paneling, paint the rooms, and add flooring (it is getting new subfloor before we arrive, but even that is getting KILZ'd).  We will be replacing almost the entire kitchen.  I think the only things we're keeping at this point are the oven (not sure on that one) and the cabinetry, though they need painting, extending for a built-in dishwasher space, and I might make the uppers doorless...not sure yet.  We will be pulling out the creepy, old, and not even vented hood, we may put in a deeper sink, we will buy a new kitchen faucet, we will be putting in new counter tops (we're leaning towards butcher block), we'll be buying a fridge, dishwasher, clothes washer and dryer...and like I said, possibly a new oven (and freezer if we can fit it in the space available!).  There are also two windows we will likely be replacing, as it appears there has been a leak there before.  We'll need to make entry steps and landings.  There actually is a decent deck on the property just detached from the getting-scrapped-trailer and upside down that we can likely use with some pier blocks, beams, stairs and railing.  We probably should replace some light fixtures, and we'll be adding in some window A/C units to help us with the heat this Summer too.

There is a lot to be done, but we are quite excited at all the possibilities.  Heck, I'm just excited that the kids and I will be able to spend so much more time outside...and have our own large piece of land to explore and enjoy.  Oh, and real produce.  Did I mention that yet?  YUM!

Things have just really fallen into place in a miraculous way, and continue to do so.  I don't know what the future holds, but right now it looks so promising and inviting.  I'll try to remember to update on projects and adventures along the way so you can join in on the fun...because as my new favorite pun says, Missouri loves company!

Six weeks ago I experienced a miracle...

Six weeks ago I experienced a miracle.

I wish I could say that and that could be enough. It is the most complete description of the truth of what I’ve experienced, and yet it is still severely lacking in depth and breadth. The idea that “truth needs to be experienced” has really hit home as I’ve pondered how to write this. How do I adequately describe what I have experienced? How do I begin to do justice to a miracle? A miracle! I wish I had more than just words, but I do believe the spirit can make up where I – and my words – lack.

So what is this miracle? I was healed of multiple incurable diseases – diseases that could only be managed through multiple medications for the rest of my life. Even on those medications I was what I call “chair bound” (i.e., I could still walk to the bathroom and my chair in the living room, but I was that close to being bedridden), and I was in that state for more than a year. I was healed in one night, and the next day was off all medications without any symptoms of withdrawal, or of the diseases they were treating. I can’t adequately portray how much of a miracle this healing has been without first explaining the extremity of the circumstance I was in. So please bear with me as I share that unpleasantness; I promise this won’t end till you’ve also read the joy and happiness. It really is necessary to see the full contrast to understand the magnitude of the gift I have received.

A little of the background story: Sometime around age 15-17 I developed a benign tumor on my pituitary gland at the base of my brain. It was tiny, about the size of half a pencil eraser, and it stayed that way. But despite being small and non-cancerous, it produced hormones all on its own that worked outside of the normal feedback loop of checks and balances within my body. These were very powerful hormones that affect almost every organ, system and function within the body, and they do a great deal of damage in excess. I was lucky that mine remained mild for years, because I was able to survive that long (Cushing’s disease has an undiagnosed mortality rate averaging 5 years, and I had it for over 17 years). And yet I was also unlucky that it remained mild, because it wasn’t so extreme as to be demanding of attention and get caught—until after all those years, when my body seemed to suddenly lose the ability to fight off the damage anymore. I went downhill very, very quickly.

It still took a few years to get to the right specialists in other states, get a definitive diagnosis and treatment – neurosurgery. This is a long and complicated story I’m trying to shorten, so let’s just say that surgery didn’t fully work. Then about 9 months later, due to the fallout from surgery, the cells causing my Cushing’s disease appeared to die off (thanks to Empty Sella Syndrome) but so did the pituitary cells that make other necessary hormones.

It required me to replace multiple hormones, with the knowledge that it would be this way for the rest of my life. They were a pain, some literally so, and it was so complex that it required me to set timers on my phone so I wouldn’t forget a dose or take the wrong hormone one of the 4-5 times a day I dealt with medication. To replace what my body no longer made, I had to take pills at least three different times of the day (not just three of the same pill either). I had to spray a rather specialized hormone up my nose 3 times a day. And I had to inject a hormone into my stomach every night before bed. Because of all this I was surviving; despite all this, my quality of life was horrible.

I would wake up, will myself out of bed, use the restroom, get dressed while sitting on my bed, then move out to my chair in the living room where I would sit, aside from a very few trips to the restroom, until it was time to head back to bed. My food and drink was brought to me. My children were taught and supervised from this chair. I didn’t leave the house except for doctors’ appointments. I didn’t drive. I didn’t cook (which I LOVE!). I didn’t clean. I couldn’t. We had to buy a shower chair over a year ago with a shower nozzle that had a hand-held head, and my husband had to help me every time. When I did need to travel for medical appointments, etc., I had to use wheelchair assistance because I couldn’t physically stand in line or walk those distances.

My social life was made up of purely digital communication, with the exceptions being my husband, children, and my mother. I couldn’t participate in any of the things I had enjoyed before. I couldn’t practice the skills or talents I had learned and enjoyed. Reading was hard. Writing was hard. Concentrating was hard. Remembering was impossible. And I don’t mean any of this lightly or figuratively. It was literal brain damage caused by over a decade of disease. I went over a month without leaving the front door of my home (amazing I didn’t have doctors’ appointments or lab work in that time!). Immediately upon standing, I’d feel like my head was going to implode, with immense pressure (yet low blood pressure I had to take medication to raise), a headachey feeling, some dizziness, nausea, pulse pounding, etc. I couldn’t “do” even if I had the energy (which I didn’t). All the things I’d used to create the picture of who I was...my abilities, skills, hobbies, talents, activities, friends, productivity, independence, etc.,...all of it was gone.

On top of all that, I felt ill on a constant basis. Each day was different, or even each hour within the day, but it was constant. I would say my baseline “good” was akin to a healthy person’s “home sick with the flu” (or insert migraine, sinus infection, really bad cold, or all of the above). Nausea, headaches, aches, pains, debilitating fatigue, lack of concentration, a need for sleep yet inability to get any that is restful, and physical rest not bringing recovery, etc. Imagine for a minute how you’ve felt when sick like that. Imagine it going on, every day for years, with no cure and no respite. Think about how hard it would be to be kind when you have no energy and feel SO badly. My husband frequently would tell me he was glad I was a naturally kind person to begin with. ;) Imagine how hard it would be to be happy when you get no relief, when your biggest joys in life are also your biggest stressors (kids!), and you have no means of “getting away” nor an outlet for release like you used to have (music, hanging out with friends, reading, cooking, etc.). And those were the good days. I can’t describe the bad ones.

So, take all of that in. Years of suffering. The only hope given you is that you will somehow hit the ever-moving target with your various hormone replacements and feel a bit better, for a while, till the target moves again. For the rest of your life, you’ll be where you are now. You’ll slowly recover from some of the damage done from the years that tumor was active, but you don’t know how much of that is permanent and you can’t actively work on any of it in this state. This new conglomerate of hormone diseases causes its own brand of fun, so it’s really bad on top of worse. Can you get a glimpse of what my life was just 6 weeks ago? This was it. I know it feels awful just to even read about it. No one wants to hear it. Friends, family...it’s too depressing for them so you stop sharing and become yet more isolated. It is hard to fathom and hard to hear or read about. It was even harder to live.

I believed the scriptures when they said God is a God of miracles. That God is unchanging, and no respecter of persons. That Christ truly did perform all those miracles when He was on the earth, and so did his prophets and apostles as recorded in scripture and in Joseph Smith’s day. I believed it to be true, so I prayed countless hours for healing, for direction, for relief, for understanding. My name was added to temple prayer rolls. I received countless priesthood blessings. Still I went through the gamut of natural and allopathic medicine. I did receive help and guidance, but still I was left with this empty shell of a life.

Mormon 9:24 says: “And these signs shall follow them that believe – in my name shall they cast out devils; they shall speak with new tongues; they shall take up serpents and if they drink any deadly thing it shall not hurt them; they shall lay hands on the sick and they shall recover;”

Moroni is teaching that miracles, including healing, will be seen among believers in Christ.

And D&C 42:48 says: “And again, it shall come to pass that he that hath faith in me to be healed, and is not appointed unto death, shall be healed.”

I was a very “good” Mormon who lived by what I was taught. I believed. I acted. I hoped. I tried. I plead and even tried to strike a bargain with God. I gave my will over to Him. It seemed I wasn’t appointed to death, and at times I would have a very clear feeling that things would be okay regardless of what I was going through, yet there I sat sick and unable to truly live. So why weren’t these prayers, fasts, priesthood blessings, etc. working?

Moroni answered my question in Mormon 9:19-21: “And if there were miracles wrought then, why has God ceased to be a God of miracles and yet be an unchangeable Being? And behold, I say unto you he changeth not; if so he would cease to be God; and he ceaseth not to be God, and is a God of miracles.

“And the reason why he ceaseth to do miracles among the children of men is because that they dwindle in unbelief, and depart from the right way, and know not the God in whom they should trust.

“Behold, I say unto you that whoso believeth in Christ, doubting nothing, whatsoever he shall ask the Father in the name of Christ it shall be granted him; and this promise is unto all, even unto the ends of the earth.”

So somehow I had dwindled in unbelief, departed from the right way, and didn’t really know the God I should trust? Ouch. Here were my thoughts on that before:

Unbelief – I believed in God and Christ, definitely. And I believed they had the power to heal.

Departed the right way – I was doing everything I had been taught was right and needful.

Didn’t know the God I should trust – Well, I certainly hadn’t met Him! But I studied my scriptures, believed in Him, had felt the promptings of the spirit, and thought I knew a great deal of His character and attributes.

Well, let’s just say my accounting of things wasn’t exactly accurate. God helped me to realize that this is a lot more accurate:

There was a lot of unbelief still in my life. I learned to define “unbelief” not as a lack of belief (disbelief) but a mixture of false ideas and truth. A truth that is a little off is still a little off. I had to begin a deep cleaning, of sorts, to have sufficient faith for this miracle to happen in my life. Faith has to be grounded in truth, or it is merely unbelief. Miracles are wrought by faith. 

I hadn’t exactly departed the “right way” in that I was guilty of some grievous sin; it was more like unknowing omission. Because of those unbeliefs, those precepts of men mingled with scripture that I’d accepted as truth, I wasn’t worshiping in the way God intended for me. I was allowing the precepts of men to override scripture, and the spirit’s own voice in my life. And that had to change for me to be “in the right way.”

I had knowledge of and a belief in God, as stated above, but Joseph taught in The Lectures on Faith that in order to have “faith in God unto salvation,” you need a correct understanding of the character and attributes of God. Again those unbeliefs, especially ones related to illness, suffering and learning, were keeping me from a more accurate understanding of God, and thus true faith in God that would bring about miracles.

And in all this I want to pause and be clear that I don’t mean to give the impression that I somehow “accomplished” my healing...that I had anything to do with it, really. I do believe that all blessings are predicated upon eternal law, and when we live by those laws, our God eagerly blesses us, to the utmost of His ability, with all that is good for us. I think of it more as having to get out of God’s way and let Him do His work...so if we listen and obey His word, His hand is visible in our lives. When I share the story of the night I was healed, you’ll recognize as I do that it wasn’t me at all. I know full well that I cannot boast of myself. That I could not have caused any of this to happen. I acknowledge fully that it was and is Christ’s love and grace only that performed this work.

So back to all those unbeliefs. What were they? Well, sadly, there were a lot of them (probably still are). But I’ll share some of the ones that I believe were instrumental in my ability to ask for and accept healing by faith.

The belief I had to let go of, that I believe had the greatest impact, was the idea that I somehow had to be worthy of Christ’s healing (add forgiveness, love, help, atonement, grace, etc.). The idea that I had to meet some arbitrary cutoff of “righteousness” before He could perform His work. I felt unworthy, and frankly I am, but the Lord can make up for all of that – that is the WHOLE point!

I had been taught to think of righteousness as a check-off list. If I’d said my prayers, read my scriptures, went to church on Sunday, partook of the Lord’s Supper, served in my callings, etc., then I was “righteous” and would be blessed accordingly. It’s called legalism by the Christian world, and really, it’s the exact form of worship the Pharisees practiced. They were exact in their worship, and yet their hearts were so far from their Lord that they didn’t even recognize Him when He walked among them. They didn’t recognize His teachings either. If we think we are somehow better than those who have come before us, we are sorely mistaken. We have the same issues, the same faults and frailties.

I had to realize that this idea was holding me back. It was a form of denying Christ, when you really get down to the nitty gritty. I looked at myself as sufficiently unworthy that even He couldn’t make up the difference. It sounds absurd to say it out loud, but really, that is exactly what I was saying, even if in different words. I had to realize that is what I was saying, and reading the scriptural accounts of the Savior performing miracles and healings during his life really helped me erase those ideas. In almost every account, the Lord forgave sin as He healed. He often cast out devils and demons. In my checklist of righteousness scenario, could someone having sins that needed forgiving be “worthy”? Could someone tormented by devils and demons be “worthy” and righteous by those standards? Obviously the Lord didn’t judge others the same way I was judging myself.

You see, Christ has already paid the price. It is done. Why would you put a gift that was already given to you freely on layaway? I truly believe that this is one of the biggest lies the adversary can tell those who believe...that you aren’t worthy enough. Because while you recognize your need for a Savior, you simultaneously place yourself out of His reach. And you do so ONLY by your own unbelief.

Another unbelief I had to reconcile was the idea that somehow I was meant to suffer. Maybe I was supposed to be this sick? I don’t know where this idea comes from. Maybe it is from the idea that we have to suffer with and like Christ? Maybe it is related to the belief that this life is for our experience and learning? I do believe that is true still, but how long does it take to learn a lesson? And if we’ve learned a lesson, can we then not be freed from the thorn in our flesh? Maybe it comes from the ideas of sin and penance? When we go back prior to the Latin translations of the Bible, sin and repentance take on a very different light...more like “missing the mark” and “re-aiming.” There is no extra shame, suffering, etc beyond what the choices themselves bring – we missed the target and it can be as simple as setting our sights and trying again. Remember, the price is paid. And did Christ turn away those who sought healing? No. He healed them. So why would I think He would turn me away?

When I was preparing for my healing, I spent time every day pondering over the things I had learned because of my illness. What had it taught me and what had it stripped away? And I prayed daily that if there was something I needed to learn through the illness, that if I hadn’t already learned it, I would learn it quickly. I prayed to know what unbeliefs were holding me back. I prayed to know if I had somehow given permission for this illness to take hold of me, and to remove that permission if it existed.

Something interesting to learn was that just as some believe that God performed miracles and those “signs that follow them that believe” in the past but that He doesn’t really do that now...I had fallen into almost an opposite trap, thinking there weren’t really devils and demons now. Certainly not associated with illness. lol I mean, I knew there was a devil, and thus demons, etc., but I somehow imagined if I encountered one, I’d know without a doubt that I had. But I hadn’t applied my understanding that all things physical are also spiritual. And if there were demons and devils and spirits tormenting people in Christ’s day that He had to cast out for them to be healed, then there was surely some spiritual darkness associated with my illness. This paradigm change is still a bit odd to me. I am not “sighted”, I don’t see spirits, so I don’t “know” this in any tangible way; I just had to be willing to be open to the concept. And of course if there were demons, fiery darts of the devil, or darkness of some sort keeping me from healing, I wanted them gone! I mean, ew! Really.

I think I also had to release the idea that I wasn’t healed before because I just didn’t have enough faith. I’d been told this over and over again by just about everyone that spoke to me about it. Again, right back to some magical marker and me not making the cut. I had gotten to the point, before I set my mark on being healed all at once and for real, that when people would say that I would say “Well then how do I get enough?” It felt like they were saying to me “Well, we don’t know the answer, so we will just blame you.” It always felt that way. They knew no solution, but I was the problem. Of course, I now understand that I had some unbelief in there I had to correct, but no one suggested that was an issue...just a lack of amount of faith, or strength of faith. So vague and disparaging. I think the idea of blaming the one struggling is horrible to begin with. Are we that uncharitable? How does that help?

Wow, I wish someone had taught me these things a good 4 (heck, 15) years ago. So please, if you suffer in any way or feel you lack faith in some way, ask God if these things are true for you and what false precepts you might have accepted as truth. If you’re willing to accept what He tells you, He will answer. Pray about it, listen, and search the scriptures. Actually, read them for what they actually say, too. Going into scripture with preconceived ideas of what they are telling you (like that the blessings are somehow figurative and future, etc.) just doesn’t get you far.

Then how did I gain “enough faith”? Well, you already know that I started to correct false beliefs. That led me to a more accurate understanding of the nature and character of God, and of my relationship to Him. I was able to trust Him more. But really, I don’t think I had more of it, or that it was stronger. It was just more true. In fact, the night I was healed, I had zero expectation of it working at that time. Yet it did. It wasn’t me.

I will say that I acted in faith, though. I think it really is a decision more than some obscure mystical power. I had watched my friend get healed this summer of another debilitating, incurable disease. I love her so much. Watching her suffer, with her pure heart and generous, giving character, was hard to do. I prayed for her as she set a date for her healing. I was many states away, and horribly ill at the time, but I pored over all the accounts of her healing from our mutual friends that were present for her healing. I got to see what an impact it had on her life, how her doctor reacted, etc. It was pure joy. It really happened. I had watched it all from afar, but I was aware of it all as it happened...the before, the preparations, the after. Miracles still do happen.

So I chose to believe I could be healed. I could have easily said “I’m not as ____ as her so I can’t be healed.” And I would be entirely correct in saying that. I don’t think I’m on par with her. Luckily I’m not the judge. I also know full well that if I had said that, it would have been self-fulfilling prophecy. I would have been rejecting Christ’s gift because of unbelief and I may not have even asked. Instead, because I’d cleared out some such unbeliefs, I chose to have hope that it would happen. Is that “fake it till you make it”? Probably. But it worked once I had my foundation of truth to back it up. Each day, along with the prayer and pondering, I also actively chose to plan for a future where I would be healed. I set a date for a group healing prayer. I made plans that would require my healing. I changed my language to reflect it... “When I am better...” instead of “IF I ever get better...” “When I am healed...” And I started to visualize what being healed might actually feel like, what it might look like. I pictured myself cooking again, cleaning again, being able to dance around the living room to music with my kids, etc. When I set the date for my healing, I was going to be attending a celebration of marriage for my friend who was healed this summer, and I began to visualize myself dancing at her celebration (in the same trip, just two days after my healing). I was able to really start looking forward to being healed with anticipation. I can’t say there was no concern that it wouldn’t work, that I’d go through all this and still be sick. I mean, how abnormal is that idea in this world? It’s pretty weird. People might say foolish or ignorant. But I tried to brush those thoughts aside when they would come because I knew faith and fear cannot coexist. I also prayed often that the Lord’s faith and power would cover my lack, and I continued to hope and plan that I would indeed be healed. I really think faith can be that simple; we are the ones that complicate it. Find truth, decide to act on it, and then expect it’ll all work out (i.e., fake it till you make it).

And really, like I said, my healing didn’t happen when I expected it to, it happened as I was preparing. I had been doing all those things above, along with whatever the spirit directed me individually to do. I had set a date for when I would be among the friends and loved ones who had participated in my friend’s healing that summer, traveling to join them for the wedding celebration. As the day drew closer, I was sad that my husband and children wouldn’t be a part of it, because we couldn’t afford the $800 a piece airfare for all of us. It was a sacrifice to buy my ticket alone. This was going to work, and it would be big, right? And I wanted my children especially to experience this...it isn’t something that happens every day and I wanted them to have a firsthand view, not just the before and after. So the Monday before my trip (I was flying out Thursday morning with my healing prayer gathering Thursday evening) I told my husband I felt like we needed to do at home what would be done there. It would be smaller because it was just us and our children, and shorter for sure, but that way they could feel they had participated in it. I seriously didn’t even consider that THIS might heal me, I was just thinking that it was experience my children needed. But I’d received the prompting, and we acted on it.

So before bed we gathered in the living room and I moved off my chair onto the floor. My husband and children gathered around me, all touching me somehow, and each prayed when they felt to and with whatever words they felt to use. They were brief as is typical for young children age 3-12, and the 3 year old even disappeared down the hallway at some point. There were prayers for my healing, that I could lead a good life, etc. I don’t remember a ton of details. When my 8 year old son prayed, he specifically cast out demons and devils in Jesus’ name. We had spoken of such things before, but he had never witnessed such a thing, so I was a bit amazed by that. Then my 7 year old son prayed after him and cast out “the darkness that caused Cushing’s” in Jesus’ name. My husband prayed last and I don’t remember much aside from him asking the Lord to fill me with light. Again, aside from those specifics, these were all typical prayers like we’ve said a hundred times.

After we had all prayed, my husband placed some frankincense oil on a stone, asked the Lord in prayer to consecrate it for my healing, and then put the stone on my forehead as I laid down on the floor for a while. That sounds unusual perhaps, because we’re so used to a rigid set of rules and expectations, but oils were consecrated and used throughout the scriptures. Stones were as well. When reading of the miracles in the New Testament, all kinds of methods were used...everything from touching the hem of a garment, words alone, water, mud, even sending a handkerchief or apron to someone who was ill (i.e., not physically present). The Lord obviously didn’t constrain Himself to one method only. We just did as the spirit prompted.

A day or two before, I’d been talking with a friend in Colorado about my healing preparations, and she lamented that she wasn’t able to be there. As we spoke, she was reminded of an occasion where she felt prompted to pick up a stone as she was walking. She obeyed. Later, she felt prompted to put frankincense and myrrh on it. Yet later, she was with a friend who felt like there was some kind of block making it hard for her to hear answers to her prayers, and as they talked, she felt she was to pray over this stone, and this woman, and place it upon her forehead. When they did so, the woman felt an immediate popping sensation and her issue was gone. My friend said she had completely forgotten about that experience until we were talking, and she was a little...embarrassed I guess?...about having shared it because it was kind of weird. I felt that it was brought to her memory and shared with me for a reason. I felt like I too needed to do something like that. We didn’t own myrrh, but we did have frankincense, so we did what we could and as the spirit directed when the time came.

Unlike her friend, I didn’t feel an immediate pop. I didn’t feel different. I stayed there on my back on the floor for a few minutes with the stone on my head, thinking and inwardly praying. Then as often happens, kids get restless and life goes on, so after a while I got up and sat back in my chair, thinking nothing of it. We followed our usually evening routine of reading scriptures and praying as a family, the kids were sent to bed, and as I got up from my chair to retire for the night myself, I noticed that I didn’t feel the immediate throbbing, head-imploding feeling. It took a few seconds to click, and then in somewhat disbelief, I had to test it out! I stood there, I walked around. I was used to making my way as efficiently as possible to where I was going – trips to other rooms were planned well so I could do everything in one swoop – and here I was pacing around for no reason. My husband came to the family room to get some luggage from the attic so I could start the next day to pack for my trip, and was amazed to see me just standing there. I told him why, half laughing, half crying. That may seem like a small thing, but it had made it impossible for me to stand or walk for so long. This was a HUGE deal. This was life-changing. I then walked into my children’s rooms because I wanted them to know that their prayers had really worked. They responded with an annoyed “Well duh, mom, we prayed for it.” And even complained that I was keeping them awake to tell them. I was shocked, they weren’t!

The next day I tested it out carefully, but I moved more, stood more, etc. It was amazing! I still had no muscles from all the bone/muscle metabolism of Cushing’s disease and the atrophy of hypopituitarism mixed with being chair-bound, but if I could stand and move, fixing that was now possible. And in the morning, I also realized I had forgotten to take some of my evening medications the night before, and I felt I should not take it then either, so I stopped all those hormones cold-turkey. I should have felt that within about 4 hours (i.e., the night before), and I should have been feeling SUPER sick by the next morning for sure...but I didn’t. And I really mean it, without these hormones, I couldn’t really sleep, get out of bed, and could have landed myself in the hospital (or worse)....but no. As a healthy person going off such medications, I should have experienced withdrawal symptoms at the very least, pretty nasty ones, and I didn’t. So hard to believe! I mean, I lived through it so I know, but it is still hard to believe!

I can’t remember exactly what I did each day, but I continued to do more in the two days before I flew out. On one of them I drove to the store. I drove for the first time in a year. And I walked around the store before my trip because now I needed actual walking shoes! A trip like that, even if brief, would have wiped me out for at least a week. It did make me tired, but I rested and felt fine after just minutes. I recovered THE SAME DAY! Wow! So unreal. So hard to believe after my body had been so abnormal for so long.

When I traveled on Thursday, I did leave the wheelchair assistance request on my ticket...but I walked WAY more. My calves practically burned due to all the activity. They weren’t injured, just sore from the sudden and drastic change in usage, but I wanted to make use of this newfound gift. After a full day of flying, I made it to my friends’ house, ate a very quick bite of dinner, and then people started showing up for the healing blessing. Everyone was shocked as each time someone else arrived, I jumped up to hug and greet them. There were many people there and many prayers and blessings were offered, so I’ll just give an overview of what was done and a few highlights of what was said.

After everyone we expected had arrived, children and all, we gathered in the living room. We sang a few hymns, said a prayer, and then blessed and partook of the Lord’s Supper as He instituted it in scripture. We’ve changed the meaning over time of “a sacrament” (D&C 89 says “sacraments” plural) to be synonymous with the Lord’s Supper, but in the time the bulk of our D&C was given it had a different meaning (in fact, the Lord’s Supper is the fourth and last-listed usage of the term in the 1828 Webster’s). A healing blessing can be “a sacrament.” An oath or ordinance is a sacrament. A wedding is a sacrament – thus Christ’s turning water into wine for the wedding at Cana. I noticed I was able to kneel normally during the sacrament without pain. That was brand new.

After we partook of the sacrament, they asked that I tell my story with my illness. And these friends wanted to know it all, to really understand what I’d been suffering with. This is NOT normal, I’ve almost never had someone ask for details, or how it impacted my daily life, or how it made me feel emotionally/spiritually. I kept feeling like I was sharing too much, because that had been my experience, and they kept urging me to go on, asking me to share more, to share it all. They asked a lot of questions. Someone asked if I thought I’d learned any lessons through my illness, so we discussed that a bit (yes, I definitely had). Another asked what I expected/desired from this healing and I explained that I wanted to be able to function as a wife and mother, to do things I enjoyed, to cook and clean, and that I had been envisioning myself dancing at our friends’ wedding celebration that weekend. I was asked if I thought I could let it go.

When everyone felt they had an understanding and had had an opportunity to ask their questions, a chair was placed in the center of the room for me to sit on, and just like in our prayer circle at home, people gathered around with most touching me in some way. And we began prayers and blessings.

Someone felt to consecrate some oil and place it on my head. All prayers invoked the name of Christ, asking Him to heal, to cleanse, to bless, to fill with light and to cast out darkness. Now and then others felt led to place specific oils on my skin. One simple blessing stated that my “sins were forgiven me.” A friend whispered in my ear at some point “Give Him what He paid for.” We received witness that there were loved ones beyond the veil there to support and help from the spiritual realm. One friend felt to seal upon me the healing that had already occurred in the days beforehand. I prayed silently almost the entire time, adding my prayers and pleading and acceptance to those being shared verbally. And I did pray verbally as well...a long, slow prayer. I would say what was in my heart, then pause to listen and think, say what came next, etc.

Another friend felt inspired to pronounce a blessing, and felt she wasn’t strong enough to do so on her own, so people stood with her, adding their love and support, as she laid hands on me as women did in the time of Joseph Smith, and pronounced a blessing. The destroyer was cast out and rebuked in Jesus’ name. He was there, with his sword, to protect me and cast it out. The devil/demon/darkness that was in me was told to leave and to leave no trace behind. And there was a shift felt by many in the room at this time. Then words were spoken that remind me that while Christ is Lord, He is also my friend, with a sense of humor, and full of love and compassion. I feel odd saying “she said” because the reality is that I knew who was speaking, and it wasn’t the person giving voice to the words. He told me there was no such thing as praying too much...in fact, He teased me about it! He said “Go ahead and try to talk my ear off!” as if He was taunting me. Yes, He is REAL and He has a sense of humor. And He speaks to you in your own language. He told me He had an ear for me and loved to hear from me. Did I mention I bawled the whole night? Yeah. I’m a crier. I’m crying writing this now, because it is so real for me, so awe-inspiring, and so very much a part of me now.

One of my friends actually had to shout between prayers “I HAVE SO MUCH LOVE FOR ALL YOU PEOPLE!” This room was filled with love. God is love. Charity is the pure love of Christ. Perfect love casteth out all fear. Where two or more are gathered together in my name, there will I be in the midst of them. These scripture quotes are true. We witnessed it that night. I do not believe what happened could have happened in any other environment than one of love unfeigned. Our hearts really were knit together in love. And I think there is a spiritual bond that is created when that happens. I feel like I am eternally tied to these people. I really do...like there is an invisible cord of love that runs from my heart to theirs like a big heavenly spider web. It is like our spirits have touched. I don’t know how to explain that. I don’t think I have words that can do a better job. I’ve felt it with individuals before, but this was a whole room of people, at once.

Prayers continued. One friend touched my head, neck, forehead, ears, etc., as she prayed that all spiritual blockages would be removed, that my glands and organs would begin to heal and function. Some prayed silently and told me later some of the impressions they received while there. One friend prayed that my heart might be healed, like there was a spiritual wall there due to past hurts...kind of like a coping mechanism that has outgrown its welcome and has become a hindrance. Christ was asked to heal that wound, protect my heart, and help remove the wall. Another friend felt to speak directly to my organs and glands. To tell them they were not fulfilling the measure of their creation, that we had removed the obstacles that were keeping them from doing their job so they could now function properly. They were told that if they had forgotten how because it had been so long since they were able to, that these cells could ask God who created them and taught them from the beginning, how to perform their work, they were told to obey Him and to begin to function fully and well without any further thought from me. So much was said, it was overwhelming. I wish we had a recorder or someone transcribing what was said for my own personal study and records. I wrote down what I could remember in the days following, and asked others to do the same, in the hopes that I wouldn’t forget.

It was a long and tiring day, and a long and spiritually/emotionally draining night, but I was lighter. I was floating. I don’t think I slept too much that night. When I got up in the morning, I showered. On my own, without a chair and without it wiping me out at all! That day, 4 days after the initial healing, my calf pain disappeared completely. The Lord gave me new calves in 4 days! My lower back and heels then started hurting instead, due to all the standing and walking. And I hoped that that too would only last for four days, but I think it was closer to 12. Maybe that’s symbolic. Anyway, that day I walked round and round in a store, helped wash dishes by hand, felt what “normal” dehydration feels like for the first time (and recovered in less than an hour through fluids and rest!), and had a great day. And each day I just did more and more and more. It was crazy! It still is crazy! Crazy good! The evening of the wedding celebration, my friend (whose celebration it was) that had been healed that summer from chronic Lyme disease jumped up and the two of us danced together. It was silly, fun, awkward, and beautiful. Many tears were shed. Two miracles, both of us so sick before, there dancing together.

Since then I’ve had realization after realization about new things I can do that I couldn’t before. The other day I ran up and down about 4 flights of stairs delivering homemade gifts to friends and family for Christmas, and I wasn’t even winded! I remarked about it to my husband, who said “You mean you feel normal”? in a somewhat teasing tone. It’s so true. I’m emotionally and spiritually lighter and happier. More at peace in my own skin. Definitely more so than four years ago when my illness really took a turn for the worse, possibly even more so than before the first signs appeared. I don’t know. It’s so surreal. I can exercise and recover quickly. I’ve made homemade bread almost every day since I got home. I’ve cooked and cleaned, I’ve done a ton of Christmas crafts (maybe I’m making up for lost time?), I’ve showered myself, I’ve driven, I’ve gone out to social events, I’ve chased kids under the mistletoe, I’ve deep-cleaned my kitchen and dining room, I’ve bought (and helped carry!) a treadmill, on and on and on. I’ve not touched medicine; I’ve had no need of it. I can feel muscles now that I couldn’t before. I haven’t dropped weight yet, but I’ve dropped clothing sizes. I’m losing measurable inches each week. I know muscles weigh more than fat, and since I can see and feel the changes, I’m just not going to worry about it. I welcome the muscles! My husband says I have a visible “bounce” to my step that he hasn’t seen in years. He says I’m more cheerful with a positive, playful mood. People tell me I look so much better. Actually, my hair is coming back in (I was half bald due to the hormone issues). I have color back in my face. My blood pressure and pulse are great – better than I could get them with medication. I sleep well at night, REALLY well. I dream. I recover from exertion and am getting a boost from it instead of a full-on crash like I have for years. I’ve been busy nonstop, sometimes not really sitting down for more than a few minutes until after dinner time. A friend at the celebration that first Saturday even said “I can hardly believe you were even sick!” And, that’s what it is like...I feel like I’m in a dream, or maybe like I just woke from a nightmare? How can I be this much better? How can it only take a week or two? It’s only been 6 even now! There are so many amazing changes, so many good things, and I keep finding more! The difference is SO night and day. It is miraculous!

I have heard it taught in church that miracles don’t really happen much anymore. If that is true, it’s to our own condemnation, as Moroni said...God has not changed. I’ve also heard people say that the reason we don’t hear of such miraculous events is because they are too sacred to share. What a pile of justifying horseshit! Excuse the profanities, but really, let’s call a spade a spade. I think only someone who hasn’t experienced the miraculous would say such a thing. I may not share all of what was said in the prayers, but I certainly can share that there were prayers and the result of them. Have we not read the scriptures? The first thing people turn around and do when they make contact with Heaven is tell everyone that will listen. It’s overwhelming to contain. When Alma spoke of the mighty change of heart in Alma 5, he asked “Have you felt to sing the song of redeeming love?” I’ve felt to sing that song. And let me tell you, when a song is stuck in your head, you can’t help but let it out. Our scriptures are full of “sacred” accounts that were shared over and over again. And they were shared so we could know the God we seek, see examples of people just as lowly as we are following “the right way” and parting the veil, and so we could have faith that it IS possible for us too. See how it all ties back into those verses I shared from Mormon 9? It’s a circle. I would not have been healed if it weren’t for someone else having been healed sharing those experiences. I too want to share so others can receive.

On my way home from a church women’s activity a week or two ago, I was thinking about how odd it had felt sitting there talking about normal things while it felt like my insides were about to burst and I wanted to shout out “God is a God of miracles! I’m living proof!” to a group of mostly strangers. Yeah, that wouldn’t have been weird or anything. ;) I’m not quite that brave, either. I had prayed that I would have the opportunity to share, and I did towards the end with a small group of women, and the spirit was strong and they were so receptive. But I was thinking as I drove home just how similar that feeling was (though at the opposite end of the spectrum) to how it feels “moving on with life” after losing a loved one. Life goes on around you; people act normal and say normal things. You almost feel like you are going through the motions but inside you feel like your heart has been ripped out and you feel like shouting “Don’t you see the world has changed? Can’t you feel the loss?” It is SO much like that. My world has changed so drastically. Can’t you feel the light? It’s so blatantly obvious that I cannot fathom others cannot see the miracle, and how are we not talking about it constantly? This is huge! It is hard to talk about normal life and go on with life as usual as if nothing has happened, and I just itch to share the goodness and mercy of my Lord. I want everyone who is suffering to receive healing! It is there for us, all of us, if we can but believe and ask for it.

“O then ye unbelieving, turn ye unto the Lord; cry mightily unto the Father in the name of Jesus, that perhaps ye may be found spotless, pure, fair, and white, having been cleansed by the blood of the Lamb, at that great and last day.” -Mormon 9:6

I wouldn’t say I am pure, spotless, fair, white or clean, but I have been cleansed and purified beyond what I was before, beyond what anything earthly could achieve. I now know that the Lord can heal in the same way that I know what hot is, because I’ve experienced it. That is the witness I share. I have felt that power and I have been touched by it in an undeniable, visible way. God is a God of Miracles. He healed me, and He can surely heal you. Ask. Trust in Him. You may think you’re not enough...but Jesus is.

Hosanna to God and the Lamb!




If you would like to see more about my "before" and "after" in video format, this is a monologue I wrote for the local stage last year about what my life was like after pituitary surgery.

And here is a video of my friend and I, both healed this year, dancing at the wedding celebration.