#95 - Who Should You Thank?

I had to partially copy a comment I was making over at Mo's blog at http://www.daybydaywiththeaddisongirl.wordpress.com/ because she put me in the mode of thinking about how some people have a difficult time accepting your diagnosis of Addison's disease.

I guess that people with other diseases that were not understood in the past have also gone through these issues...people with asthma, multiple sclerosis, muscular dystrophy, heart conditions and other diseases that affect muscle usage and that make you weak and susceptible to life's stresses are not always understood by the next person who is inflicted with the worst condition of all...shallow-mindedness.

Perhaps at one time I was one of those people because at 33 years old I had the "perfect" life and the "perfect" body, never thinking that anything bad would happen to me. In fact, I was into weight lifting and bench pressed more than most men, just over 180 pounds of solid weights was my record at the time...recorded electronically at the local YMCA. I was strong, had abundant energy and could run in circles around everyone I met. My entire life I'd been that way, for the most part.

Well, I felt great until the day that I began to feel exhausted. I don't know how else to put it because it's frankly difficult to put my finger on the exact time I had begun to waste away. It was a sneaky gradual decline, then it seemed to accelerate rapidly in the last few three months of being very sick without life-saving medications that are necessary for a patient with Addison's disease to survive. My muscles had weakened into the consistency of jelly and they wouldn't cooperate the same way any more. Walking across a parking lot became something to do that I needed to give myself a pep talk to accomplish. What was happening to me?

No amount of rest could cure my exhaustion. This wasn't a kind of exhaustion that could be made better by sleeping. You can't sleep away most diseases, but with Addison's you hope to wake up the next day to find the OLD YOU back again. Each morning becomes devastating as you realize your condition is the same. Waking up as a new person is a dream many people with serious health issues would love to experience...if only life were that easy.

Little did I know that I'd developed a disease which would make it an extreme rarity for me to ever again feel that delicious sense of being "rested" after I'd woke up. Forget lifting weights, I could barely lift my arm any more. If I had not experienced this myself, I probably would find it hard to believe that this can happen to someone. But, Addison's disease has taught me a valuable lesson in wisdom...just because it hasn't happened to me doesn't mean it isn't happening to someone else.

I don't have to battle cancer cells to know that someone else has them eating at their body. We don't have to see everything to believe it is taking place.

I never imagined that my life could change so drastically by Addison's disease. Sadly, there are people out there who are incapable of accepting truths of this disease, unless it impacts them directly. Usually, those people are the ones who end up with worse things biting them in the butt, so I often feel compassion for them because they will not escape their ignorance indefinitely. Each of us usually has some issue to deal with. But, if a person needs glasses, I don't go up to them and tell them that I don't believe that they really NEED to wear those things...that if they'd just try harder they'd be able to see clearly or that their blurred vision is proof of their mental weakness, not a sign of an actual physical problem. That would only make me look ridiculous and this is how people look when they can't accept a family member being diagnosed with a rare disease such as Addison's disease.

Unlike some diseases, but better than others, Addison's is more rare and uniquely difficult to treat because of natural fluctuations in the body, so the treatment is not as simple as the concept of putting on a pair of glasses. This disease can be difficult to manage, even under the best of circumstances.

The people who choose to be ignorant to the suffering of others are suffering from their own condition that is worse than Addison's. I'd hate to go through life lacking compassion because that position puts a person at risk to lose the most after they find themselves in a flipped position of needing the compassion of others. Worse, it would be awful to go through life embracing such shallow selfish positions. I'd rather let people know that I am so sad they have such a challenging battle and that even if I can't understand how it feels, I will do my part to try to be understanding and supportive. After all, one day, the roles might be reversed and they might need your understanding and support.

In my situation, I have been totally blessed with my family. They understand this disease. My side of the family watched me wither away as Addison's nearly killed me --- I barely got a diagnosis in time, only after coding at the hospital. But, my husband, my mother, my children, my dad, my siblings, my grandmother, my aunt, my uncle, my husband's aunt by marriage, my friends...so much support that I cannot even remember because it was overwhelming. Everyone had known how strong I'd been and to see me deteriorate so quickly was frightening for many onlookers who loved me...it scared the whits out of them.

Of course, there are people in the family who don't have a clue as to what is going on in our family with being impacted by this disease and that is good...I don't want to clue them in. I'd rather them keep their distance because they are incapable of being compassionate to anyone but themselves. With those kind of people, it's best to put out the yard stick and keep them at a comfortable distance so you can focus on the loved ones who are there for you on a regular basis. I am ready to be there for these family member and friends as well. My gratefulness cannot be expressed. Loving actions and behaviors and emotions should go both ways...sacrifice should not only arrive with strings attached...it should be given freely, with love.

I am thankful to have had an abundance of all of these and to have a family that is incredible. They helped me to continue living when the doctors were without answers. They didn't give up, even in their exhaustion.

Lastly, I wish my mother were still here so that she could see how well I am doing these days. She died worried about me. She'd had a dream that I was going to be completely healed, and I did my best to believe her dream. Even if my healing requires daily medication, I consider it to be a blessing and a form of healing, so she was right. She died at 57 years of age from breast cancer in 2006, and I am alive because of her determination, her sacrifices and her faith that an answer would be found for my decline. She was incredible. If you are helping someone who is ill, even if it is to just be understanding and loving in your ability to listen and to offer compassion, to make them not feel like a burden or to do the near impossible and help them feel less guilty than they already do for becoming sick...I hope you know that you are priceless. Truly priceless.

My beautiful sister and my niece.
Two awesome reasons to be thankful every day of my life.

#70 - Acceptance for Starting Over

For New Year's Day in 2001, I wrote a little prayer for what I felt that I needed to do during the New Year. This journal entry was several months before my mysterious Addison's diagnosis, but I was already very sick. I guess it was prophetic in a way because I wasn't making any New Year resolutions, yet I prayed for areas where I would need acceptance so I could have the chance to start over. And, I knew I wanted to know the truth about what was wrong so I could confront it.

For the first time, I was avoiding the drafting of futile lists. Before falling ill, I regularly maintained my short-term, mid-range and long-term goals. However, by the time New Year's Day had rolled around, I was struggling. My entire goal in life was to just get through each day.

At this time, my body was not cooperating in a normal fashion. I was doing everything I could think of to sift through all aspects of my life in an attempt to get to the bottom of my increasing malaise. Nothing worked, my weakness steadily increased. Each week, I noted in my journals that something wasn't right. I constantly felt under the weather. What had changed? Previously, daily life had come at such ease and I normally had abundant energy, but my physical strength was fast deteriorating.

In 2001, I was in my early 30's, and I even questioned if this was how it felt to be over 30? Surely not! I couldn't imagine things declining that fast, especially because I was in robust physical condition. Regularly, I biked, walked, camped out, hiked in rugged terrain, played racquetball, lifted weights...living very active was a cinch. I worked full-time, took continual studies at the University of Houston in Clear Lake and was heavily involved with my children's school and extracurricular activities. My husband and I had even recently took Swing dance lessons and danced at a live Jazz club in downtown Houston. Life had been full and very busy.

The downward spiral I encountered was rather quick, yet my physical frailty progressed over many months. At first, it crept up on me in a way that made me think I was perhaps experiencing a case of being run-down from doing too much. I made alterations by beginning to say "no" more often to outside demands.

After that didn't work, I'd suspect another culprit as the reason for my lack of energy and would make another useless change as my condition worsened. Then, I went to the doctor repeatedly and was told that I had a major salt deficiency and this was probably causing my chronic low blood pressure. The doctor told me, "Put salt on everything, whether you feel like eating it or not, douse your food with salt because your body can't get enough." Actually, I was craving a few salty foods and V8 juice, but I didn't particularly enjoy the salt-shaker-buddy-system.

Looking back to this New Year's Day journal prayer, I remember the emotional aspects that coincided with the physical changes I was enduring. No one seemed to understand, just yet, how unwell I had been feeling. I didn't understand it myself. But, I knew that something had to give and was thinking that maybe it was my attitude toward accepting my "aging" body. Even though I was doing everything humanly possible to find answers...and probably saw more than fifty physicians between the clinic visits, E.R. visits and hospital stays...without a diagnosis until I nearly died, I still felt as if I could do SOMETHING different to change my situation. Part of my New Year was to learn that some things were out of our hands, acceptance indeed.

I kept trying to regain my strength while praying for the urgency over my ill-health to be calmed. Now, I thank God for His powerful gift in us that wills us to do our best to survive. Our auto-pilot puts us into motion with an innate desire to find answers and to get better. Sometimes, it isn't possible. Regardless, a good fight is worth putting up the dukes and ducking, then dodging when necessary. Acceptance was about to be a huge part of my life, but not until the fight had been waged with fierce determination.

My diagnosis literally came as I hung by a thread. For me, it was a long-awaited miracle. I do not see myself as a "survivor" because I simply received the mercy of God, for some reason, and was given a start toward getting my life back...partly through acceptance. Over the next ten years, there would be major obstacles and some lessons had to be relearned, but each time, I came away with a deepened perspective about life. With truth comes the need for acceptance, then the new responsibilities can be tackled. And, here I am.

My journal entry on New Year's Day as I lay sick in bed...
months before my diagnosis with Addison's disease.

Prayer reads: Lord, I pray this New Year will be a year of peace,
understanding, forgiveness, looking forward, accepting battles
you can't win & start over - a year of more responsibilities,
a year of learning & of truth.

#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.

#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.

#54 - Acceptance Through the Exhaustion

Prior to developing Addison's, I would have a tired, dragging day. The sort of day most people experience when they are run down or haven't slept well. It's fair to say that it is a miserable experience for anyone.

But, after Addison's Disease became a part of my life, my level of exhaustion went to new, previously unknown heights that I'd never even imagined existed. When a person battles a bad short-term illness, such as with pneumonia, or a TRUE case of the flu that lasts seven days or with any other draining, sickness that zaps the body of all energy, then they might have an idea of what having Addison's exhaustion feels like. However, a short-term illness has a beautiful side to it...it is very temporary and will disappear so the old you can resurface.

A major difference with a chronic illness is that it impacts your physical capabilities on a regular basis - it is not an illness that will follow suit of the flu and just disappear. Chronic illness is just that, it is chronic. It is re-occurring and does not have a time-frame for its visit and it has no cure. You could say that bad eyesight needing glasses is "chronic." That person will wake up the next day and still need their glasses. Such is life with other parts of the body that are "out of focus." In particular, Addison's, can include pressing exhaustion combined with a general, overall feeling of unwellness and it can hit often and without warning.

When you have the flu, it royally stinks, but you can count the days and know that there is a light at the end of the tunnel. All those aches and pains and the exhaustion that comes with the flu will soon fade away. But, with Addison's, you take your meds as you should and make any necessary dosaging tweaks, but you cannot predict when a turnaround will occur. It can be as unpredictable as a blast of wind. Worse, you might suddenly feel much better only to have it bounce back on you just as suddenly to leave you in a dark pit of exhaustion again.

When I first was diagnosed with Addison's, I might get a good night's rest, but after taking my morning medication, I'd still find my body feeling heavy, weighted-down and sluggish. Even breathing would feel laborious. More than this, my mental sharpness would be dulled. My body would struggle to do the most normal things. When that exhaustion hit, there was no way to ward it off. This was something new to me. I tried everything to "fix" it. I would take extra meds, I would exercise more, I would rest more, I would eat differently, I would increase caffeine, I would avoid caffeine. I would pretend it wasn't happening.

I actually made a log over the first couple of years of having Addison's and found that when the exhaustion hit, there was simply no way around it. That is a side of Addison's that can impact some people more than others. Just as diabetes impacts some more than others; and the mysterious reason MS can be fast and furious to some people, while others have minimal symptoms; cancer can be an easy fight for some people as they go one round and knock it out while others go round after round and they get knocked out...life is not fair and disease does not manifest itself the same way in each person. I've seen the athlete get taken down in round one while the overweight, smoking, bad genetics walking disaster end up as the survivor. Does it always make sense? No. Again, life is not fair.

This brings me to my point of those with Addison's disease needing to truly understand that you may be doing everything right and things may not be right. You cannot beat yourself up over it. All you can do is your best. Since I've seen weird things with different people, I've been shocked multiple times to see the tables turn so fast, I learned to never tell a person who is intensely suffering from Addison's that there must be some "magical" solution to their health or that they must be doing something wrong to bring on their symptoms. I  have learned that you could be doing everything right and still might have major problems. This is why the book title "When Bad Things Happen to Good People" was such a hit. You can indeed be doing everything perfectly, but that doesn't guarantee perfect results.

As you get older, you see how life can teach solid lessons. Through personal experience, I've seen that my situation could rapidly change, even with the best of treatment. Having compassion for one another, understanding the seriousness of the unpredictable nature of this disease and knowing that each moment truly counts can make each of us a bit more humble and open-eyed to deeper truths. But, I do believe this disease has made me a stronger person, overall. On multiple occasions, I have teetered on the edge of life and been repeatedly given the gift to return; but this has altered my perspective. What had once been black and white is now infinite shades of gray.

On the opposite side, I still have days when I am so full of energy that it is bursting from me and I can't expend it fast enough. I am running on the inside and my body cannot keep up. Again, this can happen while taking my regular dosing schedule. When these days come, I don't complain, I take full advantage of it! Of course, I may have days that have both sides ---- the first part of the day might be filled with hours of dragging, but the second part might find me bouncing off of the walls. Regulation of my energy seems to have gone haywire, but I have learned to adapt. Flexibility is my middle-name.

A great day with my youngest daughter - 2010

After all of these years and experimenting with different medication patterns, dosaging and such, I was finally told by an Endocrinologist that this is a side effect of many diseases such as Addison's. The body's ability to metabolize energy, get solid rest, the muscles and joints might be affected greatly...so many factors. To top it off, these factors are constantly changing so the adaptation process might be exhausting in itself.

For the first few years of having Addison's, I had more energy to fight back. Then, I began to face other complications and those made the entire situation more challenging. For those of you who are suffering and doing your best to face each day with huge hurdles in your path, don't give up, keep going. The great thing about Addison's is that it can change for the better from moment to moment.

Overall, my life is rich, full, rewarding and I am physically strong. I've learned that I cannot give in to the feelings of exhaustion that might try to overwhelm me. Sometimes, I simply force myself to go through normal, every day motions, even if extremely difficult. I have daily goals I set for myself and one is to make my presence known each day. For now, this boils down to making a difference in our home. I can surely be one determined woman.

But, on those days when my body feels like a bag of weights that I must drag around, then I know I must listen and rest. I work on not feeling guilty when I am having a hard time reaching a stabilized mode with wacky blood pressure, etc., I now take a time-out when necessary and try to not be angry about this disease yanking me around.


However, it can indeed be frustrating, especially if my daily list of things to do is sitting there, staying undone. Through it all, I am constantly motivated to learn something new. I try to make the most of my down-time. Then, I take the short-bursts of energy and make them worth their while. When I am feeling energetic, I can be one little hurricane in action. That's how it works around here.
 
Since my body is so unpredictable, I go with the flow and make the most out of my good days. Sometimes, my husband is in awe at all that I am capable of doing, if the baseboards need re-caulking, he might come home to find it done. If a room needs painting, he might come home to a brand new, fresh look on the walls. I might scrub everything down and have boxes of Goodwill items waiting at the back door to be hauled off. There may be cut flowers from our garden sitting in a vase on the table. Most often, the house remains clean, my floors are my daily obsession and everything has a place of its own. I've found that having organization and cleanliness helps to make my disease maintenance less complicated. Now that my kids are grown, this is easier to accomplish.
 
If the house stays in good order, I feel better able to confront each day. If things get somewhat out of place, that's okay, but on my next good day, I'll be rushing around as fast as possible to do all that I can, as fast as I can to make a huge difference. I never know if the next day will find me physically strong and able to be very active. I grab at each opportunity. If not, I have a couple of good books next to me, my journal is nearby, I have my laptop, my cell phone and a sweet husband who stays in touch with me constantly. Last but not least, I have my dogs who are my loyal guards and companions. My life is definitely rich and full, either on a strong day or on a day with exhaustion. I've learned to appreciate every day, in whatever capacity I am finding myself. That's been a huge lesson for me in this journey of Finding Lana...acceptance.

#44 - Heartbeat Going Awry

When you have Addison's or Adrenal Insufficiency, you can find yourself in a stressful situation that is of a physical injury and/or a highly emotional stress and find your heartbeat soaring. Unfortunately, this condition sometimes means that the heart-rate won't come down so easily on its own.

As for me, with my adrenal condition, this has been a major issue. In fact, at all times I carry a bottle of Atenolol with me because stress can cause my heart-rate to soar and extra Hydrocortisone will not even bring it down. Just this week, my rate got to 160 beats per minute and I had to take a half of a pill to get it to come down to a normal rate. After extensive cardiac testing, it was discovered that this is simply a side effect of my Addison's. Of course, Atenolol has potential adverse effects for those of us with adrenal issues because it also lowers your blood pressure, so I have to use it with extreme caution. If extra Hydrocortisone doesn't do the trick, then I must take a small dose of Atenolol. It's always a balancing act.

I've heard of a few other Addisonians who must take this beta-blocker with caution. A soaring heart-rate can be detrimental to a lot of us, especially when we have gone into a state of rest for an extended period of time, but our heart continues to beat rapidly as if we're in the middle of aerobic activity. In fact, when I was first diagnosed with Addison's in 2001, my resting heart rate was consistently just near 130 beats per minute. I thought it was "normal" for me because I'd lived that way for years. Also, as a teenager and young adult, for years I looked like I had one of those awful present-day spray on orangey tans, but those pictures were taken WAY before the days of sprayed on tans. I see those pictures and I now understand what it meant and why I craved glass upon glass of the pickle juice my mother kept in the fridge. My mother would be furious to find huge pickle jars drained of all pickle juice with all the pickles left in the jar --- juiceless. As I always said, I didn't understand why in the world restaurants didn't serve pickle-juice as one of their beverages!

I don't know how many of you have problems with your heart-rate when under stress, but it sure can be shocking to realize just how fast your heart-rate is going, yet all you are doing is sitting in the passenger seat of a truck. It makes you appreciate every special moment in your life and the desire to live as fully as possible...with a heart that is not complaining about your adrenal glands running out on you! For now, when I am too stressed and my heart-rate is taxed, at least I have a temporary solution. Since stresses, illnesses, injury, etc., in our lives will never go away, I am always doing my best to artificially keep my ticker at a nice even pitter-patter.

#31 - Emotional Surges - Are We Connected?

When I was first diagnosed with Addison's/adrenal insufficiency, I remember the doctors discussing the "stress" factor with my family. Unfortunately, my diagnosis came after I had become critically ill. The day after I coded at the hospital, my brilliant cardiologist ran the right tests --- only because he put the puzzle pieces together and suspected Addison's. Very fortunate for me. I was medicated and began a "new" life with this disease.

However, after my endocrinology consults, I had been shocked to be given hugely different warnings. Most doctors said that this disease ONLY affects you after a there is a physiological stress such as a broken bone, surgery, a cold, an injury, etc., The general consensus was that an emotional stress did not warrant an increase in medication. Initially, I took this advice at face value. However, I soon understood that most doctors who are giving this advice are lacking critical EXPERIENCE with this disease --- as an individual and as a physician, and this truly hindered their advice-giving.

When I was 38, my mother lay six houses down from me in her bedroom, dying. I had been pulling long days, consecutively, and long nights. My body was worn down and my mental state was frayed. My mother, a brilliant woman with her Master's Degree in Education was lying before me unconscious with a DNR (Do Not Resuscitate) order posted in her room, in the hallway, on the front door of the house...the final moment was approaching. Reality of life and death was palpable. She was only 57 years old. Just four days previous to this, she had been able to even go to the bathroom on her own --- the downturn was fast and furious.

Hospice had come for their visits and offered to give physical help along with the awesome medications to ease her suffering, but we decided that our family had formed into a mini-army that would be by her side til the end. As kind as Hospice workers had been, no stranger would be caring for our mother in her last moments. The hands that offered compassionate care would be filled with historic love.

One evening, I walked past the six houses that separated me from my mother and I knew my body was falling into that Addisonian pit. I went to my drawer to pull out my Hydrocortisone and found four pills. A little alarm went off. Next, I headed for my "emergency stash" and found that my past weeks of mother dying had obviously constituted an "emergency." To make the bad timing worse, I had no refills. As a Kelsey Seybold patient, I knew that I would have to phone their on-call doctor for after-hours care so I could get a refill, especially because the weekend was approaching. That evening a doctor returned my call and I proceeded to tell him that I had Addison's Disease and was under tremendous emotional stress because my mother was expected to pass away at any moment, plus my medicine was down to no more than two days dosaging. He put me on hold for a moment, then returned to say curtly, "Addison's is in no way affected by emotional distress, so I cannot authorize an emergency refill."

This was my first serious experience with a physician not being COMPLETELY aware of the ramifications of how emotional stress impacts a person with an adrenal insufficiency. I wanted to sit and drill this dimwit with a few questions...Does stress affect a cardiac patient? Yes. Does stress impact a patient with Parkinsons, Multiple Sclerosis, Cancer, Stroke, etc.? Does the obvious have to be tattooed across his forehead? Emotions are PART OF OUR BODY. Emotions have an impact on the functioning of our body. Emotions can affect our immunity, our resistance. Emotions can directly affect our capability for healing. Emotions are part of the fuel behind every function of our body.

As I was growing up, my father wanted to prove a point to me. He hooked up a blood pressure cuff to his arm and told me to pay attention. As he sat in his recliner, he had me take a reading. He sat motionless, but I could see his eyes narrowing and his mouth pulling into a tight grimace --- the blood pressure reading was sky high, top number was 210. Then, he said, "I want you to see how I can control my blood pressure with my thoughts," and he sat in the same position but his eyes softened and his mouth relaxed, he took a deep breath and told me to retake the blood pressure. This time, the top number was 110. His heart-rate had also reduced dramatically, all in a matter of minutes. He told me that he wanted me to always remember how our thoughts, our actions and our emotions are tied to our health. Everything is connected. My burly father knew more than the whitecoat I spoke with years later.

Fortunately, my situation with my mother dying and me being nearly out of medication was handled by my local pharmacist. He knew the severity of my situation and gave me an emergency supply to last until I could get to the endocrinologist. The day after I spoke with the on-call physician, my mother died.

A couple of weeks later, when I saw the endocrinologist, he hung his head out of disgust and told me that his associate was clearly wrong. He begged his forgiveness because he said that most doctors do not even know the word "Addison's" much less the intricacies of how it is woven in our bodies. He explained that emotions do have a direct correlation to our disease and requires the same diligence as a chest cold would require.

During my recent meeting with a researcher in Houston, I was overwhelmed with a strong connection of understanding because he put this topic on the table. As an experienced medical professor, a holder of a Ph.D., and licensed for his various medical professional capacities, he explained how he has ALSO been a patient with adrenal insufficiency that resulted from a pituitary tumor --- starting back in 1995. The psychological connection to his bodily functions was thoroughly defined by him in a simple, yet profound way,
                       
                                 "Our emotions affect our health, AND
                                      our health affects our emotions."

As I write future entries, I will be covering other very important topics regarding adrenal insufficiency/Addison's that are often not discussed. Your comments, thoughts and emails will only add to our journey. Every day I learn something new and I can say with solidity that meeting with this doctor has been above enlightening. When he first contacted me about his research, I conducted a few credential background checks, and then I straight-out asked him why he was doing this research. He gave me straight-forward response (para-phrased), "I was diagnosed with adrenal insufficiency and upon doing research, I was finding too little of it available and much of it to be incomplete, wrong or too narrow, especially in the mind-body connection." At first, I felt very sad that he has had such a brutal experience with this condition, his road was not easy. Then, I was thankful that he was using his diagnosis to make a difference.

It has taken me nearly ten years to discuss my condition and to openly share my personal experiences, mostly because this condition is so difficult to explain. To be in open discussions with people who are not limited by their own experiences is refreshing. I have discovered that the shameful feeling as if I am a walking health-disaster is something I am not alone in feeling. Sometimes a disease or condition selects you at random; this condition can be a sneaky fox. But, knowing that our emotions do deserve full acknowledgement as a piece of our health puzzle is powerful in itself. I recommend, on a personal level, that you pay attention to all that is going on in your life and discuss this general psychological mind-body connection with your own physician. Hopefully, he or she won't be antiquated in their thoughts. Bottom line: If they think that emotions do not have an impact on YOUR condition, YOUR body, or YOUR state of health, then show them how their limited capacity for cerebral functioning impacts their pocketbook. As the researcher here in Houston hopes, one day in the near future, the medical literature available to doctors will begin to reflect a true educated and experienced voice for those with adrenal insufficiency. It will clearly indicate that a patient with this condition may indeed need a proper stress dose for certain emotional stresses, again, the final solutions will have to be ascertained by the patient with self-dosing knowledge. Til then, stay in close touch with your body signals, especially if you're laid off from work, dealing with an unruly teenager, going through a divorce or whatever might be sending emotional surges through your delicately-balanced body.



My Family - A Blessing





ENTRY #27 - CODE BLUE

Back during the Fall of 2001, I had not even heard of Addison's Disease. I wouldn't have known what it meant. But, after being extremely ill for months, I had deteriorated to the point of regularly being admitted to the hospital where I would be seen as a typical Texas patient with "dehydration." After receiving IV fluids, I would indeed feel much better. But, I soon learned that after my discharge from the hospital, I'd quickly become extremely ill again. Round and round we'd go.

Meanwhile, I was becoming incredibly, increasingly weak, to the point of not being able to sit up to even take a few bites of food. My body was no longer cooperating. And I constantly had a V8 by my bedside which seemed to slightly help, for a while.

During another go-round, I had been direct-admitted into St. Luke's Hospital in Houston's Medical Center with extreme weakness, "dehydration," and other generalizations in my chart. After several days of testing, my family -- husband, sister, mother, father - we all waited in my hospital room for the Dr's final report. He walked in without answers, so it seemed logical for him to say the next best thing; he concluded that I was a workaholic woman with a high-stress life. No duh dimwit. Problem was...that WASN'T the problem!! My motto had always been, "I work best under-pressure." Stressful situations did not necessarily stress me out. A business situation that had others sweating bullets found me calm and able to make quick decisions. But, at 33 years of age, something in my body was malfunctioning terribly, I could FEEL it and was now getting flat-out angry that all of my "brilliant" doctors could not find an answer. My physical weakness had become serious. I needed assistance to walk to and from the bathroom; my family was outraged because they knew better. But, I was discharged.

Approximately one week later, I was lying in bed, as usual since I could not walk, sit and could barely talk and my husband walked over to my side of the bed. I remember trying to focus on him standing over me, but my eyelids would not stay open. I was not sleepy; this was a blanket of strange unwanted sedation that affected my body from head to toe. He sat next to me and tried to talk with me. He even shook me, tried to rouse me. I could not talk. I began having trouble breathing. He is a first-responder and he had been forced to watch me go downhill because all of the top-notch doctors and hospitals could not find an answer. His frustration was immense. He clearly understood the value of vital-statistics and he had also grown tired of the doctor's excuses for my hay-wire vitals. His fingers kept searching for a pulse, it was too weak for him to feel. I was slipping off into some fuzzy land where I could hear everyone around me, but I could no longer respond. When I did try to say something, it came out mumbled and garbled to those around me, but I thought it was clear. Unknown to us at the time, this was an Addisonian Crisis. I was to the point nearly dying.

My husband dials 911; they show up and the highest blood pressure reading they can get is 60 over 40. My husband refuses to let the paramedics take me back downtown, so I head to an acute-care hospital in the Clear Lake area with him following the ambulance at high speeds. I do not have any memory of their multiple attempts to insert an IV, but my vessels had such low pressure that they were collapsing. Overall, I believe I had around thirteen IV sites for this particular admission, if that gives any indication to the condition of my vessels. I vaguely remember the pediatric-team coming in and discussing trying the vessels in the back of my knees, then I was out again. They were also taking my blood pressure in my legs because it often wouldn't even register when they tried to take it on my arms. Back on IV fluids, it took more time to come around. Basically, I had been slipping into a comatose state, typical for an Addisonian Crisis that is untreated.

In this hospital, FINALLY, I have a doctor who actually incorporates today's high-tech diagnostic methods with plain, old-fashioned good doctoring. He regularly came to personally check on my vitals. He could see that there was a serious issue. He first administered a Table Tilt test which was extremely conclusive, very remarkable. In this test, you are strapped onto a table and all kinds of connections to your body are made to read vitals during the test. You begin by lying down, they take a reading. Then, they put you at an angle, but not completely upright and they take more vital readings. Then, they mechanically adjust the table until you are in a standing position and again take vitals. Put it this way, once they got me in a standing position, my vitals became so serious that I could have coded at that moment. They could not even chance a repeat reading. My blood pressure dramatically dipped to the point of not being able to sustain my body while my pulse sky-rocketed because the heart was confused and furiously trying to pump blood...not a pleasant scenario. As this is happening, my brain was not getting enough oxygenated blood, among other things happening, and I'd go unconscious. This test was done late in the afternoon and gave some suggestion to the problem, but the doctors thought it could be arterial in nature. They would soon have another clue.

That night, in the hospital, around midnight, I was still on the cardiac floor hooked to the telemetry monitors and I full-out coded. I must say, this sensation was not unsual, therefore, I must have had the same thing happen multiple times at home when I woke gasping for air. God only knows how I survived this long. Needless to say, I was drifting in and out of this world during the code. In one sweet code-blue moment, I was talking on the phone to my brother. Now that I think about it, I can giggle at the thought of a hospital team working on me while I am coding, yet I am having a pleasant phone conversation with my brother, at midnight. I'm sure I don't have to tell all of you - that didn't actually happen - only in my Code-Blue moment of lift-off did that happen.

Very early the next morning, the cardiologist stood at the foot of my bed and was in deep thought. Little did I know, he'd been with me all through the night - there for the Code Blue. He stood there and rubbed his chin while thinking; we didn't talk. He suddenly jolted out of his thought process and starting issuing rushed orders to the nurse. They took an A.M. Cortisol test and later conducted the ACTH-stimulation test and THERE WAS THE ANSWER! Addison's Disease. The puzzle pieces fit.

A few pills later and perhaps IV steroids, I had been too sick to really know all that I was being given, I just remember the new pills...I was finally able to stand firm on my feet, but had not walked a significant distance in such a long time that my muscles were weak. But, the medicine had been like a light switch for my body. Just when I had started to lose hope, things turned around. The hospital ordered physical therapy treatments. The PT therapist came in and put a special belt around me that had a loop in the back for the PT therapist to hold onto, he put a walker in front of me to hold onto and we went for a stroll. I was still weak, but with his strong steady hand helping to hold me into place, I was able to really WALK again! Out into the hall we went, then once around the nurses' station and he wanted me to go back to my room - I didn't want to go back. I said, "One more time!" through tears and we again went around the nurses station while they all clapped. I had gotten close to the nurses and they all knew about my code, some had helped save my life, so this was quite a moment. To me, it was a beautiful moment shared with beautiful people. This medical team was incredible - I had my life back. The therapist even indulged me with a third time around before insisting, without compromising further, that we go back to my room. After all, it had only been about 24 hours since I had coded. But, life was looking brighter again.

And my perspective about this world was indeed forever changed after that Code Blue night.



My view yesterday, Oct. 22, 2010, while visiting a local hospital for newspaper article research.
A nearby Air Base prepares for the weekend air-show. I am blessed because that
Fighter Jet symbolized how I felt after my diagnosis!!



ENTRY # 14 - The Month Before Addison's Diagnosis

OLD JOURNAL ENTRY...
August 2001: About a Month Before Receiving Testing and an Official Addison's Diagnosis

The kids have just started back in school. I've been going further downhill. God...what is wrong with me? I can't even sit up for a couple of minutes without beginning to pass out. I'm watching life pass me by. Somewhere, there is a cork in my body that has been pulled and my life-force is slowly draining out, bit by bit. No one can find the pulled plug so it can be re-corked, but I sure do feel it missing. Forget driving; forget working; forget making dinner or doing the dishes or folding laundry or playing the piano or having lunch with a friend...forget everything mundane, normal and everything that is "me."

Above all, I mourn to just be a healthy mommy again. I don't miss the money from being unable to work, even though we desperately need it; I don't miss having a clean house...I miss the little things like getting up with my girls and making their lunches, driving them to school and being completely present in mind and body. I wake up with them, but my body won't let me sit, stand, walk and do "mommy" things. They look at me and do not even ask for anything because they are so scared. I can see it plainly in their little faces. I want to reassure them, but the truth is written all over my body and my sudden inabilities. What kind of guarantees can I make to them? Should I say, "Don't worry; go to school and I'll be here when you get home...Mommy will be fine." Should I lie? What if that doesn't happen? God forbid...I do not want to die a liar.

I am devastated. Besides me...Who can be a mommy to my daughters? Who else pushed them out of their body? Who nursed them at the breast so that they could grow up to be beautiful and strong? Were my antibodies worth forgoing the formula? Obviously, I am flawed. Who will read Ms. Piggly Wiggly to them? Who will listen to all their stories about all those "stupid" boys that I know are secret crushes? Who will wrap my children in their arms and provide that Mommy-Softness? I am that mommy. I am here!! Somewhere inside all of this mush that used to be a working, strong body...I am being buried alive! Yes, I am lying here, barely able to move, but I am still their mommy.

Truthfully, I am SICK and TIRED of lying here. It's been a couple of months now. I've not even driven in over two months. If I can't stay conscious, it's just not possible. I can't force myself to remain conscious; lives would definitely be in danger. So far, there have been at least two dozen trips to various doctors and no one has an answer. Where are the answers? Where is my magical test? Maybe I just need a vitamin of some sort.

The latest creative diagnosis I've received is the M.S. diagnosis. The neurologist in downtown Houston's medical center told me that I PROBABLY have M.S., but that it is perplexing because it wouldn't cause the symptoms I now experience. The MRI is clear of any lesions - the brain and spinal cord look decent. Still, he said there is no definitive test for M.S. That stinks. I don't think I have M.S., but I know it'd be an easy answer for these doctors and they'd be finally rid of me. I keep reappearing. Still desperate. Dr. Chairman of the Neurology Department stared at me and said, "Your symptoms are above and beyond those with M.S." He continues, "I won't chart you as having M.S., but I am strongly concluding this to be your problem." My mother is sitting next to me. We look at each other in confusion. So, I stare back at Dr. Neurology in disbelief and ask, "You don't want to CHART me as having M.S.? That means you are not convinced, so, I ask again, WHAT IS WRONG WITH ME?" He shakes his head, says he is sorry for the news and walks out. My mom and I now must figure out how to get me back home again. These trips are definitely NOT a walk in the park, especially since I cannot walk but a few steps any longer.

Doctor after doctor we see. My husband has no more time available to take off work because he has been forced to call in on so many days for me being so ill or in the hospital. My mother and I are together most every day. She is my ultimate hero. Many doctors say the same thing, like non-thinking puppets, I constantly hear the same conclusions, "You have chronic low blood pressure and a salt deficiency. Go home and eat more salt on your food." The doctors send me back home, and I sometimes feel as if they're rolling their eyes behind my back as I struggle to walk out of the room.

So, here, in my master bedroom, I lie and wait. The t.v. drones on and I can't focus on the words. My husband drops into bed beside me each night, exhausted. He's never had to do this much around here, but he is rising to the challenge. He's always been wonderful, but I mostly took care of the house-cleaning, my own job and the girls. He is amazing and adaptable. He and my mother know the ugly truth...things are not getting better. I am really trying to appear brave and "healthy" to those who walk into the room, but I am very afraid. I avoid mirrors because my skin looks odd and my eyes have dark rings. My thick, luxurious hair is rapidly thinning. Something is very wrong. My body feels as if it wants to die; it tries to die, but I fight back. Dear God, have mercy upon me, I don't want my husband or my children to find me lifeless. I want to live. I want to be normal again.

..............................that was a barely legible journal entry from near ten years ago, before my diagnosis. About a month later, in yet another hospitalization, I discovered that I had been miraculously surviving in a prolonged state of Addisonian Crisis. If you read my blog entries, you will start to see the reasons I suspect that I did survive. At that time, I would never have imagined that things could have gotten worse, but they did. To all those who suffer with Addison's and who experience a piece of hell before diagnosis or for those who are not as fortunate as I have been...I reach out to you with deep compassion. For those of us who try to live day by day with this disease...I shout the rally call of, "Don't Give Up!!! Do your best to get through the bad days, then SAVOR, SAVOR, SAVOR the good days!!" The doctors had no answers for far too long. I cannot even believe some of the ignorance that me and my family endured. Thanks to one brilliant doctor, I did survive. That account is for later. For now, after nearly ten years of trying to hide my disease, I set aside my pride to TELL ALL OF IT so that HOPEFULLY it will help others to KEEP LIVING TOO!!!

ENTRY # 10 - Addison's Who??

Short Description of Vitality: is an exuberant gusto that can't be extinguished, and if your vitality starts to fade, there is something seriously wrong.

In 2001, I was savoring life. This would be my last summer without ever even hearing about "Addison's Disease." This summer would be a time of great change.

My first warning signs of having Addison's set in fully was an overwhelming sense of my body not keeping up with my mind. I had always been strong and able to go nonstop. Like a machine, I was churning and going and being productive. Then, at only 33 years of age, I was suddenly finding my body rebelling against me. It started slowly...I would find my muscles feeling less strong...walking was not as effortless, lifting a heavy object was not as easy, and my endurance was fading.

More stark was my inability to regain my lost strength by resting or by even trying to increase my workout regiment. Nothing was working to help me feel more vitality. I wondered if this was normal for my age. It had started out so slowly, I thought it was simply a sign of my body not being in its twenties any more. I had no idea. Finding a reasonable explanation is a part of human nature. Most often, times of feeling unwell will eventually pass. Surely, this would be the same kind of thing. I'd tell myself, "Give it time and you'll be back to normal." Days, weeks and months passed by as I watched my "normal" slip further and further away. Never did I imagine that my body was being subjected to a rare disease that would soon have me flat on my back fighting for life...

As my Addison's set in, I began to crave V8 juice. I had always liked it, but not really enough to keep on hand. I started drinking one every morning. It seemed to help "pump me up." Then, within a week or so, that was not sufficient, so I added another one around lunch. Soon, I kept a V8 next to me at all times. My mom would bring me a case of V8 and she questioned out loud one day, "I wonder if you are deficient in some kind of mineral, this doesn't seem to be an ordinary craving."

No, I don't think that suddenly surviving on V8's was "normal" but I obeyed my cravings. I even informed the multitudes of doctors I had been rushing to see about this new never-ending food choice. Later, I would find out that these "I had a V8" moments probably were key in helping me survive in a prolonged state of Addisonian Crisis. The sodium alone helped increase my sinking blood pressure. Going from doctor to doctor in an effort to try to discover my ailment - I'd been told so far, "You have chronic low blood pressure and a sodium deficiency." No one asked, "Why?"

I didn't particularly like salty food, but I did like a salty V8. Later, I discovered that the sodium I gained in each drink helped my plummeting blood pressure rise high enough to barely sustain my body to a sitting position. Soon, the hurried walk to the kitchen in an effort to get my V8 had become a dangerous journey. Something was wrong. Really, really wrong. When did walking to the kitchen nearly put me into an unconscious state? But, during each visit to the E.R. or to a doctor's office, the physician would look at me and see my youth with my deep sense of humor and embarrassment and they'd determine that I simply needed rest. Didn't they understand me? Didn't they listen? I didn't feel the need to be dramatic. I plainly would explain my symptoms and assure them that I had been "resting" for weeks on end. It wasn't working. Sometimes, my blood pressure and my electrolytes were so off-ish that they'd hook me up to an IV for a few hours. The fluids, sodium, potassium, etc. would perk me back up and I'd sign my discharge papers to be sent home. And, within 24-hours, I would start the severe process of rapid deterioration once again.

Weeks passed. My mom took me from doctor to doctor in the medical center in Houston, Texas. One of the world's best, and there were no answers. There were definite signs, but not one doctor put it all together. I remember getting so sick and people coming to visit. They'd walk into my bedroom and their face would be horror stricken. Friends were pitching in. My friend Kelly would cook us meals and come dust my house. She had been my life-long friend; she knew in her heart that I was dying. What could she do but help ease my suffering in watching the house become more and more neglected. I had kept a relatively "perfect" house. It wasn't so "perfect" any more. I could only lay there and watch it fall apart. My husband was stretched too thin. Having to care for a severely ill wife is sort of time-consuming. Other friends would drive my kids to and from school. Some would want to call to provide me with company, but they didn't quite understand that I could barely gain enough energy to talk. My fuel tanks were depleted. I was sputtering. I turned on the answering machine and tried to ignore the life-sapping world. This was my worst nightmare.

People who knew me did clearly see that the worst was taking place. I had family and friends sit by my side and pray for me; some wise loved ones would lay hands on me, then cup my face in their hands and tell me that I was in God's hands now. Meanwhile, my husband was physically functioning on the highest level ever, but he was nearly out of his mind with worry. He was doing everything; the laundry, the dishes, the cooking and taking care of me with tender love. His wife was dying. He knew it. My daughters...I can't even hardly talk about that part. I tried so desperately to shield them from the truth, but there was no possible way to protect them from the ugly truth. Their mother was not the same. They developed huge anxiety, especially my youngest daughter, as they had to leave for school. Both feared that I wouldn't be there when they got home, and they'd never see me again. No doctor could give an answer. I had become so ill that David was now having to stand behind me so I could simply go to the bathroom. He'd put his strong arms under my arms and wrap his arms around me, locking his hands together. He'd slowly walk with me while helping to push my legs, one by one, in front of me so I could move forward. We had become so synchronized that a system was developed. We adapted. He was determined. Regardless, it's a lowly experience when you can't even sit on a toilet without physical assistance. However, there is also a level of illness that gets so desperate that you don't care. Staying conscious becomes your focus. That is your daily plan. Never did David imagine that the marriage vows of "you two will become one" to be like this. He'd stand like this with me beneath the shower head so I could try to be refreshed. I was addicted to showering. It had always helped before all of this started. Never did he complain. Of course, we always cherished the closeness. But, this wasn't how we wanted it to be. Now, I couldn't even stand on my own, but he stood strong for both of us.

Sometimes, in the middle of the night, I'd wake to find my husband leaning closely over my face with a terrified expression on his face. Later, hospital monitors would help me to "alarmingly" discover that my breathing was slowing and lapsing into nothingness for long gaps of time as my pulse faded away. Often, he'd reach down and be holding my wrist tightly as he tried to find a pulse. Sometimes, I'd wake up gasping for air and it would take forever for me to be able to suck in a gulp of air. My lungs were collapsing. Then, there were the 911 calls and paramedics ushering me out of the house as they tried to stabilize my vitals. It was a huge mystery and this went on and on and on. For three months. For three very long agonizing months of seconds that were non-negotiable on my part. Diligently, I'd tried to find an answer. I wanted to live. It had become as bad as bad could get. I could not hold my arms up to even feed myself. I certainly could not drive and I could not bargain with my body any longer. It had separated from my mind...I could not control it any longer.

ENTRY # 4 - Art to Mud

Short Description of Mud: An oppressive and murky substance or situation that mostly stinks.

From my best recollection, my first "something is really wrong" moment came during my familiar walk across the parking lot of University of Houston in Clear Lake, on my way to a class. September 2001...I was finishing my degree in Humanities and loved all of my classes. With a concentration in Visual Arts and Design, I looked forward to each class, well, to be honest, I didn't exactly jump for joy at the thought of having to attend Art History. This wasn't your junior, non-art major version. It was the kick-ass, upper art major version.

My day had already been very full. Running a litigation support business of 40-50 hours per week of work; raising two extremely active daughters and dealing with life's ups and downs made taking a full load this semester an extra challenge. But, I was long accustomed to a life constantly full of challenges. A full, crammed life was normal. The first few weeks of classes had already passed so quickly. Everything was going so perfectly, until this afternoon. I had made an awful decision. I had worn new tennis shoes today. Those damn tennis shoes. Little did I know, my "perfect" little life was about to fall to pieces and my new shoes would be completely to blame.

Of course, the parking lot filled to capacity early, so I usually tried to arrive as soon as possible to avoid getting a left-over parking space in the boonies. I pulled into the lot and it was already full. It must have been exam night for a lot of classes. Grabbing a spot near the rear of the lot, I parked and gathered my heavy, ridiculously thick art history book and study guide. Most people in class had already complained about the requirement that we bring them every time, but it was non-negotiable. I figured it was simply another form of academic torture. Out of the car, I focused on making my way toward the distant sidewalk. The sun had reached that pleasant stage - providing warmth, but not oven temperatures. Even so, the parking lot itself was like a Texas BBQ pit, ready for grilling. A gentle breeze was blowing and I enjoyed the beauty of this campus with its surrounding trees and bayous. The day had been a beautiful one indeed. Suddenly, as I walked across the hot surface, without warning, my head felt wavy, as if I were floating for a moment and then my feet again felt the solid ground. The brief sensation took me totally off guard and was powerful enough for me to stop in my tracks and look down at my feet. Yes, the ground was beneath me, even if it felt as if it were about to crack open and swallow me whole.

After my pause to inspect the ground, I looked around at everyone else in the parking lot as they were rushing to their classes. It was the same old scene I'd known for years. I remembered being a child and approaching this same building with my mom on the days I went to her classes with her. But, I had gone on those few occasions as her assistant - before the electric wheelchairs were purchased. I would push my mom as she sat in her wheelchair and we'd take the daunting zig-zagging concrete ramp. She couldn't use both arms, so any efforts she gave to push her wheelchair would have resulted in her going in circles. A push wheelchair needed two good arms and those belonged to me, her daughter. Those must have been the days when she had no power left in her body. I had been glad to be her engine. 

The flashbacks faded, and again, I began my trek toward the Bayou Building and after a few more stable steps, the same thing happened. My head clouded as my legs wobbled and nearly lost their power. I didn't want to fall in public. I don't think I'd ever fallen...ever. Instantly, my mind began to search through plausible reasons for my body going all weird on me. I had been forced, again, to stop because my working parts weren't properly working. This was getting to be embarrassing. Stopping in the parking lot, just a few steps from the sidewalk, I tried to look as if I were busy doing something that actually required me to continuously stop in the middle of the parking lot. This was ridiculous. This had to be a simple case of dehydration. I would go straight to the snack room and buy a bottle of water to take to class.

My books and my purse now seemed to weigh beyond their natural existence. I couldn't have been this weak...I was only 33 years old and went to the YMCA a few times every week. My muscles were powerful. I was not ashamed of being able to bench-press more weight than a normal man could handle. I'd always been strong. Strength was never an issue for me. Maybe it came from having to be my mom's arms and legs so often. Whatever, it had given me a powerful body. So, I found it very disturbing that I now could barely hold onto my books. My bulky books were in danger of slipping out of my hands. They instantly and magically became too much for me to handle. Pushing onward, I approached the curb to the sidewalk and something in my brain shut down. I stopped at the curb and looked at it as if it were a mountain. How would I get these legs of mine to step upward when they wouldn't even cooperate with me in walking across the parking lot? I glanced back at my tiny car and had a terrible urge to hurry back to its confidential comforts. But, no, my stubbornness would not let me go backwards. I never went backwards. Not yet.

Somehow, I managed to get up the curb, but I admit that the process must have looked rather awkward to any onlookers. At this point, I was immersed in my effort and had momentarily forgotten about the other people passing me by. On the sidewalk, I felt relief. Looking around, I felt mesmerized by the rapid movements of other people. This is one particular moment in my Addison's Disease journey that is most painfully memorable for me. For some reason, I stood there and began studying other people as they walked with their books and their rolling book bags toward the building. Deep down, I knew that I didn't belong with those people any longer. Squinting to search for an answer in their faces, I wondered if everyone secretly felt this way and they were also working just as hard to not show evidence of their struggle. Literally, I felt as if my legs and my body were going against mud. The pressure against me kept me from moving; the heaviness upon me increased and the difficulty with each motion made it feel like invisible mud was surrounding me. Perhaps everyone was walking through mud, yet not showing it. As I watched others effortlessly walk pass me, I realized that some of them even had a spring in their step. Where were the springs under my feet?

With horror, it began to fall upon me like a never-ending scream...the springs-beneath-my-feet had been missing for a long time. How long? I wasn't sure exactly. The mud had been accumulating; but it wasn't completely new to me. However, it was now thicker and higher and near impossible to get through. Still, a final moment of denial quieted the screaming questions. Looking down, I stared at my shoes. They were brand new, the kind that were high-tech and designed to help you jump higher and achieve greater athleticism. I decided it had to be the shoes. That was the answer to my mobility problem, my new shoes were somehow faulty and causing me trouble with walking.

Finally, inside the building, with my water in hand and a bag of salty potato chips - I took my seat and replenished my body. Focusing in class was more difficult, especially with my newfound shoe obsession. Late that night, back at home, I took off those betraying shoes and stuck them in a corner, swearing to never wear them again. Problem solved.

In a restless sleep that night, I dreamed of people running past me in a blur and of books falling from the sky. Out of the darkness, behind me were a pair of massive tennis shoes running toward me and the front toe part had big, grotesque teeth chomping to get at me. I couldn't move. I looked down to find my feet had melted into the sidewalk.

ENTRY # 1 - Code Blue Beginnings

Short Description of Addison's Disease: a rare endocrine disorder...The symptoms of Addison's Disease may develop insidiously, and it may take some time to be recognized.

Truthfully, getting started into discussing my history with Addison’s Disease is traumatic in itself. If I had fully conquered this demon, perhaps it would be easier to discuss. But, I have accepted that the battles are ongoing. It’s taken me almost ten years to reach this point of sharing. I guess I needed time, a lot of time, to sort through the wreckage.

Upon my eventual diagnosis, I discovered a particularly disturbing not-talked-about fact with Addison’s Disease…a lot of people who get a diagnosis of Addison’s, get it at autopsy. Some doctors will attempt to sugar-coat these facts while other doctors are bravely aware of these realities. Unfortunately, too many people with this condition remain undiagnosed with mysterious suffering for far too long. The “Addison’s” label is often given to a person only after they have become critically ill. I was one of those people. I was 33 years old at the time of my diagnosis.

I had been extremely sick for months and my condition was quickly deteriorating as I was consistently misdiagnosed, and my obvious symptoms were overlooked because I was so “young.” Just so you understand the serious condition I had reached before diagnosis…you should know that it took me going through an actual “Code Blue” while hospitalized to get to an answer. Thankfully, on that particular night, I had finally fallen into the hands of a brilliant doctor and he saved my life.