#59 - Once Upon a Time...

Once upon a time, I had the strength and energy to run in circles and then climb the walls with a smile. Energy was in abundant supply. My body was a great team-mate for me to do everything in life that I wanted.

After my fairy tale existence with my body came to a crashing end, literally, I found myself in a body that seemed to be detached and out of touch. I became very weak and sick with Addison's disease because a diagnosis had not yet been made, I faced daily challenges that became very serious. My mobility became severely impaired and it was only growing worse every day.

So often, as morning approached and I needed to go to the restroom while home alone, I'd lie there giving my body a pep talk and going over the plan, "Ok, the hard part will be to get myself out of bed, but once I am standing...I'll get moving pretty fast in the direction of my master bathroom, for the toilet. And I won't stop or I might not make it there. I'll hold on to whatever pieces of furniture are along the way. Once I reach the toilet, I might not be able to make it back. If that happens, I can actually sit there until I get help, not my preferred scenario, but at least I'll be able to lean my head on the counter and have a water faucet nearby. God forbid I need to have a bowel movement because those can actually cause me to pass out. I do not want to pass out while on the toilet, home by myself. It's an ugly fear, but it is possible. If all goes well, when finished, I can launch myself upward and make a stumbling run back for the bed. Ok, deep breath, pull back the covers, slide the feet over the edge of the bed and now...toilet here I come!"

Before I became very sick with Crisis symptoms because all of the many doctors and clinics and hospitals could not find a diagnosis, I never imagined what it would be like to live inside a body that could not respond to do the most simple of tasks to meet your basic needs. This struggle went on for a long time. I had too many long months of my precious time being wasted on useless doctors, I spent untold thousands of dollars trying to find an answer to my health problem and the most I would get is "You have chronic low blood pressure, low sodium and are a woman living with stress."

I continually felt discarded. I could not believe that the doctors were always so rushed and so eager to reach for the closest textbook answer. Not one doctor had the brain power to put my symptoms together and suspect adrenal problems. Even when I had to lie down in the backseat of the car to reach the clinic, then lie down until called in to the examining room and once inside the tiny examining room, I would have to have help to lie down on the uncomfortable examining table so I could remain conscious. Some nurses were puzzled, not able to comprehend why I could not sit up to even have my blood pressure taken. Even so, my blood pressure was approximately 72 over 44. Yet, at the end of the appointment, I'd basically hear the same words, "Go eat more salt."

My condition worsened so severely that my husband and my parents knew that any more doctor appointments would not be possible. I was too sick to make it into a clinic. I was too sick and weak to wait in a chair, I could not sit upright. I was too sick and weak to walk from the waiting area to the examining room. My body had become totally uncooperative. My entire family was worn out and very aware that something was very wrong with my health. Everyone was becoming aggravated with the doctors.

I remember this phase in my life as total helplessness. I was sinking into a dark cave further away from everything I knew in life, sinking into a place that was unknown and terrifying. Some mornings, I'd wake up and tell myself that this silliness was OVER and that TODAY was going to be a new day, with my body behaving like normal and all problems would be far behind me, because I DECIDED for it to be that way. Then, with all my firm determination, I'd stand up, my blood pressure would plummet, my vision would fade to black and my limbs became jello. Back into bed and back to reality I'd go. There was no convincing myself, no changing my attitude so that my body would follow suit, there was no mental compensation to make my body able to stand and walk and jump and do the things it had done months previously. I was stuck.

Waiting for that diagnosis had to be one of the worst times of my life, especially because I didn't know if it would ever come. I didn't know if what I had was something that could even be "fixed." Meanwhile, every day I was getting worse. My body was becoming more and more weak; I was forced to lie down and watch life pass me by. It got so bad that I didn't have the blood pressure to sustain my body even in a propped up position. Soon, all I could do was lie nearly flat on my back with minimal movements while trying to stay conscious. It was dire.

My diagnosis changed my life. I went from being a ragdoll to feeling life's energy surge through my body once again. For a long time, I was unstable on my feet and wobbly in my head, but I was able to walk, to cook, to dance around the room being silly with my daughters...I was finding myself again. I did get exhausted quickly and had many close calls still to come, but learning to maintain my Addison's was a difficult lesson because of how far down in health I had gone.

After diagnosis, I soon began to mourn the fact that it didn't help bring back the same old me. I wasn't the same old me any more - I looked for her, I missed her, but it would take a while for me to accept that she was long gone. But, the new me was re-surfacing from the brink of death and the new me had a fresh outlook in life.

My body was different, my mind was different and my entire existence had been altered. Now, as I look back to that time about ten years ago, I can still feel the anguish and trauma from those days when no one had any idea what was going wrong with my body, as my friends would walk into my room with fear on their face while they tried to act like nothing was wrong - some friends could only cry - some never came back. That was fine. Frankly, I was too sick to be concerned about the friends who were disappearing; the more that disappeared, the less effort I had to exert. It was a mixed blessing.

I look back and know that the years in between have helped to create a new Lana. The years in between would also hold more incredible challenges that I would never have imagined being a part of my life, but I made it through each and every one of them. Some days I still go in circles, so my journey in Finding Lana is far from complete, but I keep trying, and I have learned to appreciate every lesson.

#58 - Canvas of Illness

Canvas of Illness

Not the most Salon-Style of art, but this actually is an artistic expression of what my illness has meant for me in color. Starting from the left, I had mostly bright days, with blue peacefulness and green worldly fun and there is a sudden delineation after illness finds me, then the brown, murky numbness begins and is mixed with anger as my body is failing. Blackness and darkness enter my world, crowding out most else as I struggle to re-emerge from the dying process; the disease has shadowed me.

Eventually, I get a diagnosis and begin to join the world of the living again, but I am not the same. My brightness is not so all-encompassing anymore, it's now rather directed and controlled, but my sense of peace is growing. Of course, new battles keep popping up and that brings times of darkness again and times of just feeling numb because I can see that the "old" me is moving further away. A bit more red angry comes into my life because I realize nothing will be the same. I have to sacrifice, my family must sacrifice, I lose so much that I worked for, my body is changing and I feel out of control at times. What happened to the woman who was on top of the world?

Adapting to life, to medicine, to doctors, to testing and to learning to recognize subtle symptoms before the "biggie" crisis hits, I am drifting into acceptance and peaceful blueness is spreading and even though the brightness is less, it is more powerful when it hits. Everything is more potent.

Life has transitioned and I am who I am.

#57 - Eat the Carrot Diet & Be Healed!!!

When I was first diagnosed with Addison's disease, I had a couple of friends who just could not mentally absorb the magnitude of what it truly meant for my health. I guess this is why I didn't talk about it for so long, except to very few people. It's extremely difficult for a person who has never directly faced an immediate prospect of dying to comprehend how it feels when your body is failing you. Not the threat of it failing, but it actually going into the process of failure. It's something that is difficult to understand yourself, so how can we explain it?

The year of my diagnosis, I was a 5'2" woman right at 135 pounds who went regularly to the local state-of-the-art YMCA and actually bench-pressed approximately 185 pounds, more than most men who where lifting weights there with me. The trainers charted my progress with their computerized system that was connected to each weight-station and they were constantly amazed, wanting to actually watch me do a few because they were so amazed. Since I wasn't officially training in weights, this must have been something exciting for them to see. Simply put, I was gifted by genetics to have tremendously strong muscles for my size.

As I began to deteriorate, I forced myself to continue working out, but I was noticing growing weakness in my abilities. Then, I began to have a blanket of all-encompassing physical exhaustion wash over me more and more often. It was pulling me under. I was sinking into the earth, my legs were moving through mud and I could not figure out how to pull myself back upward. Nothing worked. Nothing. Every day it got worse.

My diagnosis came after multiple hospitalizations that were useless. My actual diagnosis was aided after I coded while in the hospital on the cardio-ward --- I was put on the cardio-ward because they could not figure out what the heck was wrong with me, but I was showing tachycardia. So, the monitor actually picked up the "Code Blue" and it was called on the entire floor through the loud speaker system --- the entire works. I heard it loud and clear, but I was drifting off into Code Blue Land and had no idea that it was me who was coding. Yes, I knew something was really wrong. My body was rocking side to side violently in the hospital bed as my heart was soaring so fast and beating so hard that it had become a powerful motor chugging inside of me. THAT I will never forget.

My blood pressure went so low that it was undetectable and my heart just kept chugging in a fruitless, furious effort to get blood through the vessels that were collapsing throughout my body. One of my last memories was of cuffs attached to both arms and both legs with nurse's yelling out that a blood pressure could not be measured, then one of the nurse's ripped off one of the mechanical blood pressure devices and began using an old-fashioned hand-pump version, which still caused trouble. Then, one nurse yelled that my pulse was over 220 and I remember my eyes fluttering open long enough to actually see the digital reading. The head nurse saw my eyes drift open and she hurriedly yanked the digital face of the machine away from my vision in an effort to protect me from the process of my body dying.

As my hospital room filled with medical personnel, I was fading in and out with some hallucinations that I would later discover were not actually happening. One was of a phone conversation I was calmly having with my brother on the phone, at midnight, as my room was crowded with a Code Blue response team. Yeah, I really thought I had spoken with him, it seemed so real. I guess the body protects itself by allowing your mind to float into another realm as reality becomes too harrowing. I think God is ultra-cool that way.

Anyway, after we received the news of my Addison's disease and had begun the treatment that would be required, I actually argued with the doctors. I tried to convinced them that I ALWAYS heal very fast and that it would NOT take at least a year to start stabilizing, as they "mistakenly" were predicting. I could not believe the medications would be required for a lifetime...all of it was so sudden, so weird, so unheard of, and so difficult for me to process.

Then, I began my medication routine and found that I was actually able to stay horizontal again! My body was able to stay upright. Miracles upon miracles!! I had deteriorated so severely for months before diagnosis that I was unable to drive, sometimes unable to sit and even feed myself; it had developed into a very serious situation and I was only 33 years old.

A friend came to visit after I was home from the hospital and she looked at my medicine bottle and said, "I'd absolutely refuse to take this medicine; it is nothing but poison. You need to research and practice holistic medicine and get off of this crap."

I sat there wishing she were right. In fact, I'd already researched the disease to the hilt and found that a "holistic" approach simply did not exist, not unless you wanted to "holistically" die.

To this day, this friend thinks that the medicine is unnecessary, but I am patient. I realize that if she were to borrow my Addison's disease for about a month and try to go without the required medicine, the only-option route, then she just might decide that maintaining consciousness, breathing and having brain function is worthwhile. It might be convincing enough to reach for a little pill that can work miracles for the body's inability to hold blood pressure.

I explain it like this to people who do not understand Addison's: Imagine your body sinking inward, unable to process fluids...it begins to shrink, to wither and you are collapsing in on yourself no matter how much you drink. Soon, your vessels begin to close in on themselves and you are trapped within your body while being unable to make any movements and being unable to communicate. Your body is simply a container that is collapsing as the life is literally sucked out of it. Is this scary? Absolutely! This exactly why the medication is critical - it helps to plump things back up.

So, I think I'll pass on eating the carrot-diet because I know it doesn't have the power to heal me, but the thought sure is nice. Others have the luxury of remaining in their dreamworld while I must face the truth and possible consequences of not handling my disease properly. Since I've made it through multiple major surgeries and numerous Addisonian Crisis situations, I must really be on track or be hugely blessed, maybe both. Regardless, I am aware of the ugly side of this disease and maybe that is exactly what has helped me survive. Every day is a new day, I'll just keep doing my best and ignore well-meaning friends who are lacking a few common sense brain cells as they chew on their awesome carrot-diet.

#56 - Sleeping Siamese Twins

Having great trouble staying asleep is a huge problem of mine. One of my solutions to help me fall asleep has been for me to read myself back to sleep. Since I am courteous of my husband who most often sleeps very soundly next to me, when I wake at 2:30am, I quietly reach over to my stash next to my bed to gather my book of the week and my little LED round light.

Part of my lullaby routine is to prop the night light under my chin, place the book on my chest and read. Now, I know you are thinking that there are specially designed "book" lights out there and I've tried them and don't like them. First of all, I read pretty fast and don't like having to constantly move the light out of the way to turn a page. Irritating. My under-the-chin light works pretty darn well. Plus, it keeps me still.

My taste in reading goes far and wide. I don't have a particular genre or category...I like pretty much everything. Old books, new books, academic books, fluff and stuff books, yep, pretty much everything. But, right now I am reading a little hardback book by Dr. Henry Cloud titled, "The Law of Happiness." If you've read this book, let me know what you think about it as well in the comment section below this entry.

The only kicker with my reading choice is that it must be somewhat enjoyable because once I read a few pages I am hard-ball committed, for better or for worse. I stick with it, even if I find it deplorable because I must find the reason it was published in the first place! Sometimes, the reason is lost, and I can't find it. For sure, I have made some dreadful choices that kept me hostage for too many pages. I guess that's the tad bit of the Obsessive Compulsive Disorder side of me, gotta finish it! I'm working on that angle. Of course, I am my own book critic as an ordinary woman who reads frequently and uses her books as a natural sedative. Great combination.

Of course, when you get to those books that you can't stop reading, then I am in some trouble, but reading does have a calming, distracting and luring effect upon me. Each page is like watching the swinging pendulum as I slip into book hypnosis. Eventually, I can feel my eyelids drooping, perhaps my chin-propped light will slide out of place or my book will suddenly jump in my hands to startle me back into full consciousness. Then, I know it's time to sluggishly put my goodies back on top of my over-stuffed nightstand. Usually, it works and I am fast asleep very quickly.

Occasionally, after waking and in too much pain to fall asleep, I'd get up and go to the living room so I'd not bother my husband. Wrong move. He has this super internal radar that is wirelessly connected to me and he somehow detects when I have left the room and he usually comes looking for me, telling me to come back to bed so HE can sleep! It is adorable. After near 25 years of marriage, my husband and I are truly like sleeping Siamese twins.

Now, I don't know if this book, "The Law of Happiness" will necessarily make me a happier person, but it surely is creating more awareness and confirmation in the things of this world that do bring happiness. Better yet, it's reiterating how it's not really the "things" of this world that make us happy, it's the kind of life we live. Happiness comes from what we focus on and what we care about enough to put energy into. For me, part of my happiness is this blog which helps me release long pent-up, fresh pent-up, no right and no wrong feelings about health wars. Yes, there have been wars. So, I guess I'm on track with the Happiness factor. Getting in touch with others who are battling their own wars has been cathartic. I'll keep reading this little book, but it seems I am already on a difficult, but rewarding track toward continued deep contentedness. This means, I'll probably keep blogging, until...I don't.

#55 - Insomnia

Insomnia has become a thorn in my side. My concept of insomnia sure did change after I developed Addison's disease. Without cortisol, we don't have the natural hormone that gives us the get-up-and-go shove that we need to get through our day. And...since cortisol normally has a natural tapering by the end of the day, it allows for your body to relax and go to sleep with better ease.


I'm Jealous

Well, for those of us with Addison's, it works a bit different. All natural hormone regulation in this area is kaput. Instead, we synthetically "regulate" our system and this often includes extreme difficulty in tapering for night-time because we still rather like our cardio-vascular functioning to continue, so we can't purge our body of the synthetic version just for night-time sake. The synthetic version ends up staying in our system, sometimes in amounts that directly interfere with the body's ability to visit la-la land.

It appears that many with Addison's, myself included, need another synthetic solution to help the body come down off the day's steroid dosages enough to truly get a good night's rest. This is helpful especially if you are battling a chest cold, stomach virus, etc. and have had to double your dose to the stress dose level. Even under the best of circumstances, this might leave you a bit wired come night-time.

I used to tell my husband that I felt as if I had copied the "Elvis Presley Plan" with needing my Hydrocortisone to get me up and running early in the day and as night approaches, I need my downer, my Ambien so that I may have a chance to fall asleep before daybreak. And, remember, I am low-dose Hydrocortisone regiment.

For years, I struggled for my body to get better rest, but as the other battles with health made the Addison's Disease more challenging to control, I was forced to address compounding issues. So, lately, when I have a tough night, I can take a little Ambien and usually get four hours straight sleep. A little bit of solid sleep will do anyone a lot of good.

For a while, I was depressed about needing this help to fall asleep. But, on nights like this, when I am wired, unable to sleep and am frustrated that my body will not abide by my wishes and my desires, then I am stuck having to trick it with a little white pill. My little friend, "Ambien" will come to my rescue and knock the little insomnia-bug out of me. Thank you Ambien.

Hopefully, you won't have to eventually resort to these methods to regulate your own body. It took me nearly ten years of having this disease before these things became necessary. But, there are always newer and better medications to come to our rescue. For now, I am glad to get some sleep and be ready to take my next round of "uppers" in the morning, per my "Elvis Presley Plan." Difference is...my plan does not involve any recreation, it is only my way of staying alive for another day and in a way that's not really very glamorous.