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.

Saturday, May 30, 2015

HOPE! A recap of where things stand plus an update

After more than a decade of Cushing's Disease taking a heavy (har har) toll on my body, I had brain surgery last February at MD Anderson Cancer Center in Texas.  They definitely got the tumor, but pathology said it was "hyperplasia" meaning spread out, random cells throughout my pituitary were slightly overgrown (think buckshot), instead of a solid, encapsulated tumor...these had just had long enough to grow together into a visible clump.  Surgery didn't fully resolve my Cushing's Disease symptoms or test results, but it all appears to have gone away when I developed empty sella about 9 months later (ie, my pituitary is now being smushed by the CSF that surrounds my brain).

That empty sella both killed off what was left of my Cushing's, and some of my pituitary's own function.  I can no longer produce growth hormone (bit of a misnomer) and that deficiency made me feel almost as bad as Cushing's did.  I have been replacing growth hormone with a nightly injection for about 4 months now, and am getting close to what will likely be my ultimate required dose (titrating up also made me ill as it catabolizes cortisol and my body's HPA axis is still trying to recover from Cushing's).  I am on the low end of normal for the next hormones that generally are affected following pituitary damage, which affect the female hormones.  I will be starting transdermal estrogen soon (insurance doesn't want to pay for the brand my Endo specified in the rx).  I also started oxytocin (a posterior pituitary hormone) a little over a week ago.

I am once again back on fludrocortisone too.  Aldosterone (that fludro replaces) is another adrenal hormone that regulates sodium and fluid balance in the body.  Aldosterone deficiency has some pretty nasty symptoms and signs, such as nausea, dizziness, loss of appetite, headaches, low blood pressure, high pulse, etc.  BUT, very long story short, we found out I was on too much sodium and not enough of the hormone to help me retain it.  I was adding an extra 2,500-5000+ mg/day on top of what I ate to keep my blood pressure high enough.  And, guess what, it doesn't work as well as enough hormone with just a touch of extra salt dose.  So, I went off the sodium for a few days to try to flush it out of my system before upping my dose.  That was nasty, but with the first dose of fludro my symptoms disappeared.  I'm now taking 1/2 of a fludro twice daily, eat normally, and at most have to add in one or two grains of coarse sea salt (but almost never).

We'll keep testing every month or two to make sure my current hormone replacement is appropriate, and to watch for further losses in pituitary function.  The next hormones in line are generally thyroid (TSH) and cortisol (ACTH).  But so far my thyroid is holding out.  Don't ask me how since I already have hashimoto's?!  But, I haven't even needed thyroid replacement for a couple years.  Most of the hormone replacements I'm on increase your need for cortisol, so we're watching that closely and I have a very low-dose hydrocortisone prescription to use with dosage increases so that I avoid adrenal crisis.

All that medical mumbojumbo said (I swear that was the condensed version), I think we've finally figured out my roadblocks!  As I keep telling people this week, I went from "sick and tired" two weeks ago, to "plain old tired."  I mean, I'm still hypopit, and hormone replacements aren't perfect.  I still have to adjust doses depending on temperature (fludro is a PITA), exertion, stressors, etc.  And I still have to recover from Cushings' extensive damage, but I FINALLY feel like that is actually possible!  

Since the fludro/salt changes, I've been able to do more during the day and not be deathly ill by nighttime.  Yesterday I even did "Easy Yoga for Beginners" from amazon prime streaming.  It was basically stretching, and probably 75% of it was on the floor.  I couldn't even hold my arms up straight for the warrior pose when we got to it, which was a bit disheartening.  Yes, Cushing's and AGHD did THAT much damage.  

I did have to stress dose by taking some hydrocortisone late last night (but that's as much about the GH dose increase I'm adjusting to as the extra exertion).  I didn't feel sick exactly, but my bp was low, my limbs felt like lead, and it felt like I didn't have the physical energy to breathe...rather literally.  I took the hc to be safe.  My BP didn't even hit 120/70 with it and I slept great so it appears that was a wise choice.  

I'm SO sore today, so I'm not going to let my muscles rest a bit, lest I injure myself, but hopefully tomorrow I can do it again.  I really want to get back to an active lifestyle.  I WANT to be able to cook and clean.  I want to be able to turn on music and dance around the living room with my kids, or go on a walk, go shopping, meet up with friends, etc.  I still have to be a bit careful, but things are looking up.  I am really hoping that my muscle, stamina, and energy increase quickly.  Exponentially would be great!  ;)  

Saturday, May 2, 2015

The Magic Foundation Adult Convention

The adult program and registration details are now available here!  

I'm so excited!  I'm planning to attend.  My endocrinologist is speaking Sunday, and some of the topics I look forward to most right now are things like dealing with insurance, oxytocin replacement, how hormones interact, hormone testing and replacement in hypopituitarism, and solu-cortef pumps!  YAY! 

Thursday, April 30, 2015

Why I Think I'm in Remission, and why this isn't the end.

A friend of mine requested I write this post. This is a question everyone asks, and often repeatedly: "Am I in remission?" or "Is this symptom I'm experiencing the start of Cushing's coming back?"  I mean, lets face it: this disease is a mess from start to finish.  Nothing about it is easy.  Nothing is straight forward.  Nothing is black and white and nothing is clear and obvious.  Heck, I sat in a conference room full of Cushing's Patients a year ago and listened to a top endocrinologist in the Cushing's world tell us that one of his doctor-friends had recently said to him "If I had to deal with Cushing's all day every day, I'd kill myself."  Now, this was said somewhat jokingly and we all laughed, so don't take that the wrong way.  He was discussing the ins- and outs- of testing and how complex it is, with high recurrence rates to boot, and that it is complicated for the doctors and confuses them too.

I am pretty sure I'm in remission.  I see more and more signs of that for sure and very few signs of Cushing's now, even though I struggle every minute with the damage it has done.  My life is still a mess.  My health is still a mess.  My symptoms and labs STILL confuse my doctors constantly.  I'm still confused daily by what my body is doing.  No two days are alike, and yet the symptoms caused by various hormone imbalances are...and trying to tease out which hormone is causing which symptom, and whether it is high or low, is just a blast.  A blast, I tell ya.  I still have to watch for whether Cushing's will come back and I am still walking my "tight rope" but it does look like I am in recovery from Cushing's itself.

There is not one diagnostic test nor one symptom by which to judge.  It is not that simple.  Again, it's a weight scale like that of diagnosis.  Even the specialists are informed by the tests, but rely heavily on what *we* report for signs and symptoms, almost more than the testing. So, I'll go through some of what has informed my opinion on the matter for my own remission:

Sleep/Insomnia  I am able to sleep now.  I think I could even nap during the day if I didn't have 6 kids running around.  Before I started my growth hormone replacement, I still had issues with sleep, woke up frequently, didn't feel rested when I woke in the morning, and I had difficulty falling asleep, but it just had a different flavor to it.  I was tired but couldn't sleep instead of wired and couldn't sleep.  It wasn't like I was "bouncing off the walls" with racing thoughts, etc and signs of high cortisol, I simply couldn't sleep well.  Luckily, once we diagnosed my AGHD and replaced that hormone, I started sleeping better from day 1.  Now I have no insomnia or sleep issues.  I can fall asleep at a reasonable time (that adjusted gradually), and I wake up at a reasonable time...kind of.  lol  I'm still tired a lot, but that's recovery.

Appetite/Craving  I can skip multiple meals a day.  I shouldn't, because it messes with my blood sugar which messes with my liver, growth hormone/IGF-1, and can cause some adrenal insufficiency if I'm on the edge, but I have to actively remind myself to eat most days.  I also can't eat even half as much as I used to.  I didn't think I ate too much quantity before, but now some days I have difficulty finishing a small home-made burger (and I do mean small) or I can only eat half of a sandwich.  I'm full.  It is like my stomach has shrunk, except it didn't have a chance to do's literally that my cortisol is lower so my appetite is lower.  It's that direct of a connection.  I also crave carbs and sweets a lot less.  I wasn't a huge carb eater before because my body always seemed to have a greater need for protein and vegetables, but I did crave them sometimes.  Now I can't even eat any form.  I have a hard time eating bread, even freshly homemade bread straight from the oven.  That too was a gradual change, but it's a pretty obvious one.  I can skip the icecream even when others around me are eating it, and I don't feel like I'm missing out.  It just doesn't interest me.  I'm still a chocolate fiend, that hasn't changed.  But you know what I crave these days?  The only thing?  Melted, salty, fatty cheese.  I mean, I liked it before, and loved Pizza, etc...but this is constant.  Weird, eh?  I know my body needs the salt, but perhaps it's my body's way of saying I need the fat too.  Time will tell.

Acne  I still have acne issues.  It's still obnoxious.  I have scars everywhere and I still get big, cystic acne, but I think it is slowly, very slowly fading.  Maybe that just takes time (it's been about 6 months since I switched from symptoms of failed surgery to symptoms of remission), or maybe the growth hormone replacement is helping with that too (when I became hypopit at 6 months post-op, I lost 100% of my GH production).  I can say that the cystic acne doesn't show up at specific times in my maybe it is just working it's way out of my system.  The acne I get that is related to my cycle is MUCH more normal.  I've not experienced it in so long it is weird, but I simply get more blackheads or little whiteheads around PMS time and they disappear quickly without becoming massive and cystic.  It's crazy.  Hopefully the trend of the cystic acne dissipating will continue.

Weight Gain/Loss  I've mentioned before that in my high cortisol cycles I could gain around .5-2 pounds in a day, and in a low cycle I could lose .25-1 pound in a day (something like that?) without any changes to my diet or activity, it was pure hormones.  So, I would go up and down over the course of a month, but I gained faster than I lost and it was an obviously upward trend.  Now I still have some ups and downs in the weight when I increase my GH dose and that causes swelling, or when we went on our trip to Seattle/OR a few weeks ago and ate lots of yummy food, or my fondu-birthday gift we indulged in for a few days, or when my period starts...but I'm on a definite losing trend.  I'm down 19+ pounds from my highest weight, again without any changes to my diet or activity level.  I'm still pretty much chair-bound (one step up from bedridden), and my appetite has changed as stated above, but I still eat the same basic foods and still indulge in my chocolate cravings.  I'm at the point where I desperately wish I could physically cook and exercise (or simply be active) like I once did.  I bet the muscle would pile on and the weight would fall off.  I think I've gained just enough energy in my 3 months on GH to *want* to be active and do things even though I still can't, whereas just 2-3 months ago I was so physically exhausted I didn't even consider it an option, so it is actually a bit more irritating and depressing right now!  lol  Talk about an odd turn of events.

Tests  My post-op cortisol testing was too high, but wasn't horribly convincing.  The neurosurgeon had obviously removed the bulk of the problem, but there was still some residual something going on.  I went on cortisol lowering medication, which I couldn't seem to get stable on (despite having taken it before surgery and doing relatively well on it).  All in one month, we found out that medication was causing me liver damage (it's a known problem, thus the reason I was being screened...but this was the least problematic of the possible medication options), an MRI showed that I had developed empty sella (my pituitary was being smushed by CSF coming from the space surrounding my brain above --this can cause a loss of pituitary hormone production), and my IGF-1 (a marker for growth hormone deficiency/excess) had suddenly dropped by about half, to below range.  I left that appointment with a lot of lab work to do.  I was still testing for Cushing's Disease re-diagnosis, and also adding in more pituitary hormone labs to see if and how the empty sella was affecting my hormone levels.  As it turned out, from a GH stim a few months later, I had severe adult growth hormone deficiency (my body failed to stim at all), and we then began watching the other pituitary hormones to see if they would follow suit.  The jury is still out on that one.  I have "low-normal" results on various hormones, with accompanying symptoms, so only more time and tests will tell.  But, I dutifully did a few more of my Cushing's tests, but then stopped about half way through those (again, it was a good 8-12 total serial tests, so it takes a while).  I just didn't feel "high" when I should have, so stopped testing.  My endocrinologist didn't require me to keep testing to confirm it was gone, he trusted that I knew what I was talking about.  (I *may* need to retest when the AGHD is fully treated, but I doubt it at this point.)

Vitamin D and Ferritin  These were surprising and unexpected.  Some of it may be due to the liver damage (that can affect these results), but after over 3 years of high-dose replacement with 50K iu's of D3/week and 6 ironsorbs/day not getting me into the "normal range", those results suddenly were fine.  I backed off on my D3 and iron per my endocrinologist's request, and the D did fall somewhat, so I'll stay on that (I mean, I DO live in a rainforest in Alaska, and sit indoors in my chair all day!), the replacements work!  My iron has been stable since, despite my ferritin having been at a 4.8 when I started - ie, I needed infusions...and badly.  I think this is another sign that the excess cortisol has left my body.  I may not be suddenly "cured" from these deficits, but the replacements for them actually do what they're supposed to.

Buffalo Hump  This one I didn't notice until my husband pointed it out.  He was rubbing my neck one night, about 5 months ago, and said that my hump was suddenly soft and squishy instead of hard and solid.  My hump had always been a smaller one, but it was there.  Now, a few months later, I just have regular fat skin there.  It may always have a slight hump-like appearance, or it may fade as I lose weight, I don't know...but I'm happy.

High/Low Cycling  This is the biggy.  I still feel like total crap during my period...I still have lower cortisol then, but I don't get highs any more.  There were two days total at some point about 2 months ago where I was able to do more, but it still didn't feel "high", I just felt kinda human again.  And it never came back.  Instead I feel pretty low most of the time, to the point that we are watching me for adrenal insufficiency.  I stray into the "may need a cortisol stim test" range some times, and will continue testing that every so often.  I don't seem to have any adrenal reserve at this point, and when I do much of anything (and I mean anything), I start developing symptoms of adrenal insufficiency.  When I started my GH replacement shots, I had a nasty reaction that my endocrinologist feels was due to the GH catabolizing cortisol, making my cortisol levels drop too low.  Luckily I didn't go into crisis, but it did mean it took me 3 months to get onto the dose my endo wanted me to start at with GH.  We don't know how much I'll need in the end, but I have to be very careful increasing my dosage now because it will lower my cortisol further each time.  I have the feeling I will be panhypopit eventually (lose more pituitary hormone production), thanks to the empty sella, but you never I'm trying to be very careful and not take hc unless I absolutely need it (when I go AI) in case there is a chance my pituitary and adrenals will recover.  I appear to have no adrenal reserve (just enough to get by if I don't do anything, but not enough if I exert myself, am ill, go through a period of stress, etc) and have been trying not to surpass my limits which really is a bit of a crap shoot, to be honest.  (Again, the tight rope analogy from earlier this month.)  But, back to the cycling.  I'm not cycling.  I'm not high.  This is THE most clear reason I don't think I'm dealing with active cushing's any longer.

All that said, being in remission from Cushing's is obviously not the end.  Do I sound like I'm healthy?  I still can't be active.  I still feel ill in one way or another most days.  I've traded Cushing's for hypopituitarism.  And, frankly, I'm good with that.  It is still obnoxious and complicated, but it is far more treatable (if/when my hormones stabilize and we are able to figure out precisely which I need to replace and how much).

Who would have thought that some measly CS fluid would have killed off what was left of my Cushing's?  It's a major blessing; a totally unexpected and unusual one.  The rest of the damage that has caused (or is still causing) will still be a lifelong struggle, but hopefully I'll get some stability and some semblance of a life back, becoming active and relatively healthy again.  I will always have to keep an eye out for the signs and symptoms of Cushing's to return, and many live in fear of that with each symptom that pops up.  I will worry about that when I have reason to worry, but right now I am enjoying that I no longer have to fight that battle. 

I've not experienced a return to what and where I was before, that rarely happens, what I am experiencing is a new body, with different needs, limitations, etc.  It is a new day and I will be a new me. 
Now my job is to learn about this new body, to help it recover and be healthy in it's unique challenges, and to make the best of it.  It'll take some time.  It's intimidating, daunting, and tiring, but I think I've moved through the grieving process to an acceptance that that previous life and previous me is gone.  I've buried her and mourned her loss.  Like any other loss, grief can return unexpectedly, but it is generally momentary.  I know she's gone and won't be coming back, and I can be grateful for what she taught me and enjoy the memories.  What I have now is discovery.  Who is this Cushing's-Free Catherine?  What are her limitations?  Her strengths?  Her abilities?  What brings her joy?  I look forward to meeting this new Catherine, and learning all about her.  It makes me nervous because it's all new, but it is also exciting.

Wednesday, April 29, 2015

Testing for Cushing's, MN Saliva

Oh my goodness!  I just realized I forgot salivary cortisol levels in my previous posts about cortisol testing for Cushing's Disease!!! 

Midnight Salivary cortisol levels are checked guessed it...Midnight, and use a sample of (You guessed this one too, didn't you?) saliva.  Yep, spit.  This is another "Gold Standard" test used today by endocrinologists to diagnose Cushing's.  It's a simple test you can do at home, freeze, and take with you to the lab when it's convenient to you.  It is especially helpful for cyclic patients.  You can wait till midnight (really, it is often done at 11pm) and if you don't feel high, you don't have to test and can save it for another night.

Because cortisol should be at its lowest at night, at nearly zero, and because Cushing's frequently causes high cortisol at night (flipped diurnal rhythm), it is a great time to test for abnormal highs  Anything above 0.09 on a midnight salivary cortisol is diagnostic for Cushing's, assuming you didn't accidentally contaminate the sample (via bleeding gums, cosmetics, etc).  Generally contaminated samples are sky high, though, or are marked by the lab as contaminated. 

The collection containers may be little plastic tubes you spit into, but more often now they are little cotton swabs that fit inside those tubes.  (Think of a mini-tampon, and you've got the right idea.)  You don't eat or drink (or brush your teeth) for X amount of minutes before the test, and then you put it in your mouth and let it absorb as much saliva as you can.  Then you place it in the tube, seal it, label it, place it in it's bag, and then in the freezer till the next day you go to the lab.  I don't know how long these hold, so I wouldn't wait forever, but you can definitely go a few days.  LabCorp seems to be using a newer collector model that to me looks like a mini lol.ipop with a plastic handle.  Whatever the method, it's all quite similar. 

*Note that there are a number of saliva testing labs online that do it via the mail...these results are generally not accepted by doctors, better to get a doctor to order the test and do it through a standardized lab if you want to use it for diagnostic purposes*

Need-to-Know Cushing's Basics

Here are some posts that I made last year that I think would be helpful to review for basic info (and some in-depth info), if you don't already know your way around a Cushing's Diagnosis:

Symptoms of Cushing's 

Types of Cushing's Syndrome

Cushing's Tumors

Distinguishing Cortisol Highs and Lows

Treatment for Cushing's

And there is a series of posts I made this month that goes through commonly-used tests starting with: "Testing for Cushing's, Introduction"

And, if you want to get a feel for what the struggle is like?  Here's a monologue I wrote that was preformed readers-theater style locally: A Big, Fat Target

Tuesday, April 28, 2015

Testing for Cushing's, Finale

DIAGNOSIS!  Or so we hope.  I know it sounds weird to hope for a diagnosis, tumor, and surgery (often neuro-surgery!), but that's reality.  When you feel horribly sick, you're losing your mind, your body is morphing right before your eyes into something foreign and gross, and it feels like there is nothing you can do about it?  Trust me, you are GLAD you find a possible reason for it, some proactive way to fight back (test, see doctors, learn) and a chance to get rid of the source of the problem and recover from it.

But, this isn't a simple diagnosis by ANY stretch of the imagination.  Many illnesses have fairly cut-and-dry diagnostic testing.  The test either says you have it or you don't, bam.  But that isn't the case with this disease.

Think of it like a scale: You have to accumulate evidence proving you have Cushing's, and doctors pretty much have the scales tipping the other direction from the moment they see you.  It's sad, but true.  "It's rare."  You might just be depressed, lazy, and eat too much and poor quality foods, etc.  The scales are generally tipped to assume that is the case, and you have to provide overwhelming evidence to the contrary.  And yes, it is often the patient that has to meet the burden of proof.  It's left in our hands, that is why it is SO important to become a well-educated, informed, proactive patient.

Like I said, you basically have to accumulate enough evidence to tip the scale far enough in the direction of a diagnosis to prove their preconceived opinion wrong.  What that takes is so completely different from doctor to doctor that it is unreal.   
Remember that there is a HUGE list of signs and symptoms, and how each patient presents with a different cluster from among that list?  Remember that there is no one definitive diagnostic test that alone can prove and disprove Cushing's in all patients?  It is apparently the norm for doctors to play favorites with testing, giving more weight to certain tests and significantly less to others (or they simply don't even order the other types of tests).  Some have favorites among signs and symptoms (signs being things that can be viewed and measured like blood pressure and stretch marks, and symptoms being what you report feeling or noticing like fatigue and weakness).  If your individual presentation doesn't match up with their preconceived ideas of how a Cushing's Patient should look, you are SOL. 

You *might* have a chance to persuade them to let you keep testing and prove them wrong, but that's not often the case and most of us are too sick to fight that losing battle.  You usually have to start over with another doctor, which is often a reason why many of us end up having to travel to see a specialist who deals with Cushing's all the time.  I've heard of yet worse things happening, like doctors calling patients crazy, putting such things in their medical files, and even going out of their way to contact other health care providers of their patient to let them know.  I had a friend whose "well-respected" doctor did just that, contacting her employer's insurance company telling them she had nothing physically wrong with her and maybe was just depressed.  She was a smart cookie, did her research, and found a doctor willing to treat a person and not a text book.  She received the denial notification for her disability literally while out-of-state for her brain surgery.  (Which, she later won on appeal, obviously.)

There is yet another obstacle in our way related to doctors' opinion/training...that of the lab tests themselves.  We've discussed briefly in the previous posts about individual tests for Cushing's and that they have some inherent flaws (and episodic or cyclical illness especially), but we haven't yet discussed how doctors apply their reference ranges.  I'm not sure how they are calculated (there's got to be a bell curve in there somewhere?) so we'll just stick to how these ranges may apply...

But first lets talk about thyroid hormone testing as an example.  Most people are at least a little more familiar with the blood draws for TSH (pituitary hormone that tells the thyroid to produce thyroid hormone), Free T3 and Free T4.  Much of the medical world has come to realize that having thyroid hormone levels within the normal range doesn't mean everything is hunky-dory.  You could have a TSH at the top of the range and Free T's at the bottom of theirs, and need thyroid replacement.  You could be like me and have a doctor say "Your TSH is in-range so you're good!" even when my ACTUAL thyroid hormones were below the range.  More and more doctors are starting to understand how these play together, and that the range itself is really is too wide.  It's just a ballpark idea and not a set and fast rule.

So, Cushing's testing is kind of like that, except it's kind of the opposite.  Being outside the range, in our case, isn't considered proof you are sick.  "It's normal!" is often told to patients whose levels are DOUBLE the range.  In my opinion this pretty much defies the purpose of a "normal range" to begin with (in both cases, cortisol and thyroid testing), suggests we are using FAR outdated and inaccurate diagnostic tools, and certainly at the very least suggests a need for re-evaluation and recalculation so that they actually HAVE some meaning that is useful...but I'll get to my point.

Many doctors have been taught that cortisol levels 2-3 times the normal range is "pathologic."  That means that with tests results that high, you are pretty much guaranteed to have a disease causing the overproduction (as opposed to anorexia, alcoholism, or depression, stress, etc).  Just to be clear, what that means for us lay people is that if the cutoff on the top end of the normal range is 50 (so everything over that is flagged as high by the lab), levels around 100-150 or higher are proof of disease.  

*There is a chance it is caused by excess steroids such as prednisone pills, inhalers, creams, etc, but this can be rather easily ruled out*

Having levels between 50-150 doesn't mean you don't have high cortisol, but means that your doctor needs to rule out other causes as the source of those high tests, often through repeat testing and most doctors can rule much of it out at your very first appointment by taking a standard, detailed, patient history.  So for most cases, having a test above the range should just mean doing a few more tests than someone whose tests are at or above that 2-3X the norm level.

Well, here's the difficult part of this one: More and more I am hearing of doctors, and endocrinologists specifically, who are interpreting that 2-3X normal cutoff as the line for diagnosis itself.  This means they are saying if your high results aren't at least THAT high, then you are sent home with no diagnosis or treatment.  High cortisol, even when "mildly" elevated, can do very severe damage over time.  

It's absurd and flat-out-lazy, in my insufficiently-humble opinion, that doctors drop the ball.  SO much of these downfalls could be avoided if they just tried.  I don't know what else to say about it!  These doctors are costing patients health, years, and possibly their lives and it makes me both angry and so, so sad. 

If you find yourself in any of these precarious situations with a doctor, and it doesn't look like your concerns are going to be resolved, please ask other patients (with similar testing, symptoms, etc would be best) which doctors helped them and get your butt there.  It may be completely obvious to you that you are sick.  It may be that other cushing's patients can see from your results that you are too.  And it may be that other doctors would see "disease" if they saw that same data.  

Become an informed patient, keep copies of all your results, imaging, etc yourself, ask questions, get yourself to the right doctor(s), and truly be a responsible partner in your care.   
This is your life.  

 *I did have to prove my disease like everyone else. It was a very long process.  I did have experiences similar to others' of being dismissed and blamed for decades beforehand, but mostly by pediatricians, general practitioners, and doctors of internal medicine (well, and friends and family).  I was lucky that by the time I was sick enough to start taking sole charge of my situation, regardless of those experiences, I had a patient support group to help me get to an endocrinologist who believed me when I explained my signs and symptoms, my efforts to diet and exercise, etc. and was compassionate and caring from the beginning.  It could have been much, much worse.  This battle has been hard enough as it is.  I am so very grateful to those family, friends, and health care providers who have made and continue to make this process easier, who believe(d) me, and who treated me with kindness, respect, caring, compassion and support.  It is noticed, it is appreciated, it is and always will be remembered.*

Monday, April 27, 2015

Testing for Cushing's, Imaging

Imaging such as MRI's, CT's, Octreotide Scans, and Gadolinium Scans (newer) will and may be used in the search for the source of your Cushing's Syndrome, though don't worry, it's not usually all of these, nor all at once!

Because a pituitary source is the most likely location of an ACTH-producing tumor by far, the pituitary is usually the first place they look unless laboratory testing strongly suggests an adrenal or ectopic source.  (And, I'll probably give the most info here since this is where the bulk of my experience has been)

The imaging of choice for pituitary tumors is a 3T dynamic pituitary MRI. 

3T denotes the strength of the magnet used (3 Tesla's).  There are still a lot of 1.5 T machines in use, but they do NOT give as clear an image as a 3T machine for pituitary tumors, which is why 3T is now the standard when looking for pituitary microadenomas (more common than macro's, which are larger and could be more easily seen on a lower-strength machine).  Microadenomas are under 1 cm in size, and are often as small as 3mm (or even less!).  Look at a pencil eraser, then cut it in picture this chunk inside a bean and sitting at the base of your skull, almost in the center of your head.  Think it'd be hard to see?  Yep.  Many, many radiologists and doctor's miss them, which is why it is important to get copies of your imaging and not just the report, AND to be sure a Cushing's-experienced radiologist, endocrinologist and/or neurosurgeon looks at the actual images.  (Ask me how I learned this one the hard way?  Yep.  Wasted a year of my life sick with no known course of action because I didn't know this...okay, I also didn't know when to test and testing at the wrong time.  So it was a double whammy, but either of those having been different would have suggested I needed to keep testing.) 

The word "dynamic" refers to how the dye is injected.  They first run a number of scans without contrast dye.  Then they either have two tech's work together in unison, one to inject the dye as the other starts the machine with an audible count-down to be sure they inject and start at the same time OR the tech will hook you up to an IV-infusion type machine that he can set to inject the medication automatically as the tech starts the MRI.  It is VERY time-specific.  The reason it must be done this way is that these tiny tumors generally look like normal tissue on a pre-contrasted MRI.  And, they uptake dye like normal tissue and thus will often not show up on a post-contrast MRI.  So why do the MRI?  Because they absorb the dye at a slightly slower rate.  A healthy pituitary should absorb the dye in a uniform way.  These ACTH-producing microadenoma's will tend to look like a dark spot when that happens, but as you keep looking through the timed scans, eventually it will lighten up like hte rest of the pituitary.  Dynamic is important.  You want this done right.  Most surgeons won't go looking for a tumor no one can see.  It isn't exactly low-risk.  But staying sick isn't low-risk either.  You want that proof so you can get well.

Sometimes the paperwork will say with/without contrast, but even so, it has to be done a VERY specific way as explained above.  You will know they aren't doing a dynamic if it is just one person administering the MRI, and they walk in with an injection needle and then expect to walk out and start the scan afterwards on their own.  I had somehow been scheduled wrong once, and the tech came in in just this manner.  I KNEW it wasn't right, so refused to let him inject me (once it is injected, there is no way of doing a dynamic for some time, and I was on a trip with no way of coming back later).  I knew better and it wasn't going to happen!  I told him no, it was supposed to be a 3T dynamic pit MRI.  He argued with me, I didn't relent, and finally he listened when I told him to call the neurosurgeon's office to ask them (it was a post-surgery MRI ordered by the neurosurgeon this time, and I was at one of their hospital's imaging facilities).  Sure enough, I was right.  They had me on the wrong machine, even!  A 1.5 T.  Something had gotten lost in the shuffle of scheduling.  The tech's attitude then switched from irritation and frustration with me, to being impressed I knew it wasn't the right protocol.  He asked if I was a tech myself.  lol  It was a mess of a day as they tried to get me fit into the right type of machine (which were fully scheduled for the day already), but they were kind and it worked out.  I got my 3T MRI.  When you're making decisions about whether to have repeat brain surgery, the right testing (and imaging) is obviously important; it was worth a day of work.

should be obvious, right?  I mean, that's what we're trying to see!  But no, sometimes doctors will order a brain MRI.  Yes, both take pictures of your brain AND your pituitary, but the pituitary is tiny and the brain is big, and a brain MRI's "slices" (pictures) are spread farther apart.  We need the focus on the pituitary, and we need those super-fine, close-together slices.  Brain MRI's aren't likely to catch microadenoma's, and as many of us know from experience, it's hard enough to find them with the right protocol.

The next most common cause of endogenous Cushing's Syndrome (meaning outside the pituitary), is an adrenal source...meaning a tumor on an adrenal gland.  Laboratory testing can suggest this is likely, because often ACTH is low or near zero with these patients.  Adrenal glands can be hard to visualize adequately, as they're fairly small and sit like little pyramid hats atop each kidney.  Sometimes an MRI is used to image them, but I believe more often, an abdominal CT is the imaging of choice. 

Suspected Ectopic Cushing's Syndrome (meaning a source not in the pituitary or adrenals) usually produces very HIGH amounts of ACTH, so lab testing may suggest this is the type of source to look for.  It also often requires an MRI or CT, but these may not be sufficient to identify a tumor.  In this instance, as well as sometimes after a failed Bilateral adrenalectomy, more specialized, whole-body testing is required.  In many ways it is the same sort of scan, but they use a contrast dye that can help pinpoint a tumor specifically (ie, the dye will be attracted to that type of tissue, I believe tissues with somatostatin receptors) and will "light up" on the scan.  The most common type is an Octreotide scan, but there is a new type of scan, that may be more sensitive, that is starting to be used for testing also called a Gadolinium scan.  Neither of these types of tests are widely available, again it is specialized testing and generally patients have to travel to find a facility with the ability to preform them.