Wednesday, January 31, 2018

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.

Tuesday, January 30, 2018

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

Thursday, March 3, 2016

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!

Friday, December 25, 2015

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 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,’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 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 advers
ary 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 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 gather
ing 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 scriptur
es. 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 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 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.   

Friday, October 16, 2015

Acceptance and After Shocks.

The 5 stages of grief are denial, anger, bargaining, depression and acceptance.  And I think I'm coming to an understanding of acceptance now...finally. 

It doesn't mean I am by any means happy with my health and abilities.  I still REALLY want to do so much better than I am, to feel better, to be active, to get my mental abilities back, my physical ones, etc.  But for the most part I have stopped expecting more of myself than I can give. 

It also doesn't mean that I have stopped trying to get better, to seek help, and to progress past my current limitations and level of health.  I just can't let that drive rule all my thoughts and actions.  I have some very serious health issues still (empty sella syndrome, hypopituitarism, hypoaldosteronism, hashimoto's thyroiditis, low vitamin D, liver damage from medication to treat Cushing's, etc), any one of which could cause severe fatigue, but we have yet to find the magic bullet to get me on the upswing.  I'm still looking for answers, still testing, still adjusting hormones, and I still carefully test my physical limits to see if I can move forward (it still backfires, sadly).  I just can't let this desire be my entire focus because I already know from experience that the lack of timely progress will swing me right back into that dark head space I was in before. I can't spend my life in that place.  No matter how limited that "life" may seem, I need to live it better than that.

So I have not come to the point of accepting that where I am is where I will always be.  But I do have to keep a positive outlook, and that means accepting it may be a really long road (already has been) to recovery, and having realistic expectations of what "better" might look like for me.  From the outside looking in, the improvements I've already had may appear rather minimal.  From my perspective, some of them have been huge.  I wanted more, I still want more, but I have to be grateful for those changes I have seen, and realize that any improvement gets me one step closer and gives hope for more.

I'm no longer depressed daily by the thoughts of everything I've lost and everything I am missing (luckily that one went away early on in this path).  Though sadly, with a chronic condition, I'm not sure that the stages of grief are ever final and gone.  I think they just show up less often the more we accept our illness.

My life is still so different from the lives of friends, I don't know that it is even possible to bridge that divide of understanding.  Some times I just don't have the energy to try (and especially to fail) at explaining some aspect of my life.  Few people want to spend the time and energy to truly understand, and sometimes I think people just can't fathom it even if they try.  I get it.  Where I am now is so foreign to where I was 5 years ago.  It is really hard to believe I ended up here when I think about it...and I've lived through it! 

But this gap can mean that in the course of totally normal conversation and events, I am hit with a reminder of how different my life is.  For the most part now I choose not to even mention it, and try not to think of it much or dwell on it.  If I share my reality with those who love me and want to know, it comes across as depressing, overwhelming, and sad.  There is just no way to sugar coat it so thoroughly to not have that happen.  And I don't want to be constantly going on and on about how bad my life is.  I've done that.   It doesn't help me feel much better, and by no means helps them feel better!  

My life is actually fairly good, despite all the horrible crap, because I choose to feel that way about it.  Each day is different, and some days are horrific, but I choose not to dwell on those and each day truly is a unique experience, no matter how "same-same" it appears on the outside.  I do feel a need for others to understand still, to connect on a deeper level, but I choose not to force it.  I don't know that I could have done that before, while in the midst of such difficult struggles.  I do know I didn't do that.  I was so desperate myself, that my need to share and be understood came first.  Huh, maybe it is all about my needs still, but my needs have changed to a need to keep friends, to interact with them as "normally" as I can, and to not dwell on the hardships so that I can endure in hope.  Guess it's all still selfish motivation!  Dang it.

My point is, there are still things that bring the grief cycle back to my present, forcing me to work through it all again.  It could be as simple as hearing a song and wanting to jump up and dance to it, a recipe I want to cook, seeing an advertisement for a musical I wish I could participate in, reading a meme about getting away from electronics, sunshine out my window, sorting through sewing fabric, or the desire to go shopping or to just leave the house.  It's always something unexpected, frequently something common, and often something I have already grieved over at some point.  But for some reason on that day, it strikes my grief cord and I have to go through the grieving process yet again.  The difference is now I know I can work through it, and I can do it so much faster than before.  It's almost like after-shocks.  The big grief-quake is over, these are just leftovers -reminders of what I went through, releasing smaller bursts of energy that still remain.  These grief after-shocks seem to be dropping in both intensity and frequency, so hopefully that improvement will continue, and it will not be contingent on my recovery.  I hope I will get a LOT better, I WANT to, and I'm still working on it, but I can be happy now.

Thursday, July 23, 2015

Things do get better...

I'm down 28lbs since my Cushing's Disease symptoms went away. I've been steadily dropping a few pounds a month without effort. Crazy how much damage high cortisol can do! And crazy how much improvement bringing cortisol into normal range can do!

For the record, the weight is only one in a large list of symptoms, and while it is the most visible, it is by no means the most dangerous or problematic -most of us "Cushies" would take plain old fat over the disease any day.

There were so many years of judgment and blame (this readers theater monologue can give you an idea of just how hard that is/was). The credit for the weight gain wasn't mine, and neither is this loss.

As of a month ago I was still only able to walk about 200 steps a day and I haven't been dieting one iota. This loss is pure hormone balance and healing.

Today I went looking back through my symptom tracking and I am back to a weight I haven't seen since November 2013! I have had some improvement in energy finally this past month (though overdid it a Magic and am still paying for that). I have a long way to go, but hopefully I can start building back muscle, start cooking and cleaning and doing things I enjoy again, and maybe even start burning fat and building muscle faster WITH effort soon.