Sunday, September 25, 2011

#94 -The Red Blouse

Addison's disease, in my particular case, was very difficult to diagnose. At the time I began to deteriorate on a steady, rapidly downhill basis in 2001, I had been a strong 33 year old woman who even bench-pressed over 180 pounds at the YMCA several times per week. Talk about body was the epitome of strong.

Fortunately, I had simply been born into a family with strong muscles. My father, all throughout his youth and for most of my life, had that bulky weight-lifting build. Some people are born that way. Others must work at it with gusto to enjoy a little budding muscle, but that wasn't how my family genetics worked. I could lift a finger-nail file and my muscle would get a superior work-out.

So, it wasn't conceivable to all of the doctors that I was seeing during my deterioration that something could REALLY be wrong. Yes, they could see that my vitals were off. Too many times, I was brushed off. My excessively low blood pressure was blamed as a chronic condition. My low sodium levels were attributed to a sodium wasting condition that the doctors would tell me to remedy by adding more salt to every plate of food I would eat. The rapid heart-rate could not be explained, so it was ignored. That patchy skin on my hands and face with the orangy tan I sported, without being outdoors consistently, was not a consideration because, again, I was a young woman and surely this was "normal" for being young. I appeared too young, too strong and too "healthy" for anything serious to be lurking with my health. If only the doctors would have truly listened to me...they would have had an edge, but those who don't listen cannot provide wisdom.

Every time I was admitted to the hospital, they'd hook me up to IV fluids, give me potassium (I had potassium wasting instead of accumulation as an outdoors Texas gal) and I'd feel better, my vitals would drastically improve, therefore, I didn't need medical attention any longer...nothing was wrong. Every doctor assumed that I was just dehydrated. But, within six hours of being discharged, I'd be at home in a rapid decline and barely able to walk across a room once again. It was disheartening.

Yes, I went to every specialist imaginable. Even a "Dr. House" type of diagnostician who indeed ran every test you could think of running and they would always see that there were weird puzzle pieces but no doctor was able to put them all together. It took me coding at a local hospital to actually get the doctor's mental mechanics to work a bit faster for a proper diagnosis.

But, by that time, I'd had extreme muscle wasting. My organs were in danger of failing, so close to failing that I went into cardio-pulmonary failure during the code blue. My body had been living in such an extremely weakened state for so long that a "recovery" would be a far off and away achievement.

Even after the miracle drugs Florinef and Hydrocortisone were given to me and I was finally able to walk by myself again, I still had severe ups and downs for another year. I would be in and out of the hospital with great difficulty at being stabilized. And since I had been so very sick as to be coding, I was not convinced that I would truly recover. I'd seen the ugly truths of being seriously ill. I'd laid in bed gasping for air after waking with collapsed lungs. I'd lay in bed unable to respond to those around me because my blood pressure was so low that it could barely be registered. I'd feel my heart nearly thump a hole out of my chest.

If your body is battling a catastrophic illness and your muscles will not work, your organs do not function normally and you cannot make your heart beat normally or your blood pressure can hardly be normalized, then you realize that little in this life is under your control. If you do not have your health or if you have not been able to equalize your medical condition, then everything else is out of reach.

Everything in my life became altered because of my illness. My job, my body, my way of thinking, my home, my daily life...all of it changed. I was still very sick. For months I had been too ill to do much of anything, so one of my responses to being ill found me deciding to quit buying clothes. Since I'd come so close to death on numerous occasions and was still riding a scary medically unstable roller coaster, I did not feel confident enough to buy anything because it might end up sitting in my closet expense my family had to pay for as I lie unable to get my money's worth out of the article of clothing. It didn't make sense for me to buy new clothes. I'm a very practical person and buying clothes when I could barely get out of bed didn't make sense. So, I quit buying myself anything.

This was a huge personal part of my own trauma with being seriously ill. I no longer found myself valuable enough to spend money on because I might be gone the next week and I didn't want that money to be "wasted" on me and my unstable existence. I guess I was too leery to hold out excessive hope. After all, I'd gone so far down in my health to point of coding...I'd become too ill to even give much thought to such insignificant matters as clothing. I had other details on my mind, such as breathing, keeping my blood pressure regulated, making sure my vitals didn't dip dangerously low before I was given a chance to, I quit buying clothes.

For one year straight after I became very ill. I literally didn't buy myself one thing. Actually, the week I began my downhill plunge into Addison's darkness, I had received my last delivery of catalog ordered clothes from Victoria's Secret...clothes, not lingerie. There was a pair of capri jeans, a couple of nice tanks and a few other things that I would never wear. Once I began my steroid treatment, I gained 10 pounds pretty fast and that meant that my size changed drastically enough so that I'd never be able to fit into that last set of ordered clothes I'd paid to have delivered before my diagnosis. Immediately, I could see that my body was now unpredictable; I found it easier to just quit buying any clothes whatsoever.

For one solid year I didn't make a purchase and as that one year mark came to an end, I began to feel stronger. My condition was under a semblance of control and I really needed a new blouse to wear for my still very rare outings. Just one blouse. Hesitantly, I began to allow myself to take a look at a few blouses in the department store. It wasn't easy. I often felt as if I would somehow jinx myself with buying something to wear. For so long, I had not allowed myself to buy anything that I began to have obsessive-compulsive thoughts that my decision to not buy clothes was linked to my survival...and if you've gone through something serious with your health, you do begin to question your every decision and its power to affect your life as you know it.

But, one day, I came across this 100% red silk blouse with gold embroidery and I fell in love. Going into the dressing room, I tried on the blouse and it was perfect. I took the plunge and bought it. There was no way I could have left that blouse in the store. This blouse wasn't inexpensive, but it symbolized my triumphant return. I splurged because I'd gone for so long without spending a penny on myself. This blouse signified my strengthening belief that I just might make it long-term. Maybe I would be around long enough for any new clothes to again become old and worn. Truly, that was a returned dream come true.

I wore the blouse to a couple of functions, then the blouse suddenly disappeared one day. Actually, I'd been devastated to discover that I'd developed another serious medical condition, a cardiac issue that would require two very risky surgeries. Again, I became very ill after these surgeries with a collapsed lung; I had to have my first ribs removed from my body; I experienced severe internal bleeding into my chest wall and too many other battles to name. It seemed as if I was being attacked from the left and right, from front to back, with my health, my personal life, my home life...everything was under siege. Again, I was hanging by a thread while feeling very alone in the world.

The beautiful red blouse was a fading happy memory. Still, I would sometimes find myself over the coming months and years in a search for the blouse and it was nowhere to be found. I didn't know how this blouse with such meaning could suddenly disappear, but I didn't have the energy to keep focusing on its disappearance, its search and the devastation of not being able to find it. Why did I care? After all, this was only a silly blouse! But, what did the blouse's disappearance mean? Was I again losing my chance to be healthy?

That blouse had been my outward celebration of feeling stable enough in my health to look forward to the future again, then its disappearance became the bane of my existence as it paralleled my desperation while my health suddenly took another spiraling downturn. Darn that blouse!

Through the years, I forced myself to repeatedly attempt to give up the remembrances of that silk blouse. Still, I'd find myself wondering where the heck it could have gone.

Since then, we sold the house we were living in during that blouse purchase and we've bought another much larger house. In fact, our house now is three times larger than the one we lived in when I had purchased that red blouse with the gold embroidery. Still, I've never forgotten it.

Then, last week, my husband and I were going through some old boxes in the garage. We found one box that had some old sewing supplies of mine. I had loved sewing when I fell ill...I'd sewn my entire life. My great-grandmother, Lola, was a professional seamstress and owned a shop in Madisonville, Texas. Sewing is in my blood.

My youngest daughter, Stefie, sat next to me last week in the living room as I was going through this box full of old sewing supplies and I pulled out one newly discovered treasure after another...a bundle of fabric never used, a package of elastic, more fabric scraps that really needed to be ditched, a package of sequins left over from the time I sewed the girls their Halloween outfits and at the bottom of the box was a plastic sack with red material in it, I held the sack, pulled out the material and there before me was The Red Blouse!

I couldn't believe it. I sat there with tears filling my eyes. After all this time, after nine years, this blouse had again found its way into my life. My heart was pounding and I was inspecting the blouse carefully to make sure there wasn't any damage. It was perfect, but wrinkled. Then, I vaguely remembered putting it in with my sewing supplies with the intent to study the embroidery on it, but I had fallen sick again with cardiac issues, so the entire effort was chunked from my mind.

Stefie really didn't understand the significance of this blouse, so I tried to explain, but I don't know if a person could ever explain such a highly personal story. My words would never be adequate to express all that this blouse had meant to me during such a volatile time in my life...a time when I finally felt there was hope for a real future.

Washing the blouse, I let it dry, then hung it in my closet prominently so I could see it every time I walked in. It was as beautiful as I remembered. But, it looked awfully small. Unfortunately, the past nine years has found me to be physically softer with a bit more weight on me from the time I'd bought this little red jewel. After all, I'm not in my powerful 30's any more, I'm now approaching my mid-40's, but I'm still feeling rather fabulous to be honest.

Still, I let a few days pass by as I would enter the closet and give the blouse a dreamy stare. One day, I couldn't resist, I tried it on. Yes, it "fit" but it was definitely too tight. Whoa-Mama-Tight, definitely not suitable for wearing in public unless I lost ten-fifteen pounds. And believe me, to get the chance to wear that blouse again, to savor its deep meaning as that silk hugs my'd be worth it.

But, another lesson I've learned through these passing years as my blouse hibernated has been to let things go. I no longer cycle backwards in a fruitless effort to regain whatever it is that I feel I might have lost. Instead, I've learned the hard way to keep moving forward, even if that means leaving parts of me behind. Sometimes, we cannot move forward if we keep circling backwards in wasted efforts to be the person we once were...once upon a time. Forget trying to find that historic part of you and start embracing who you are right now!

I could cry all day long for the old Lana I once enjoyed with such vigor, but she is outta here. However, I've got the new Lana to savor and I happen to like her very much, thank you. Instead of pining away for all that coulda-shoulda-woulda been, I'm appreciating what I have at this moment. Actually, I have a lot to be thankful for and it's a beautiful life that I am able to enjoy, even with challenges.

However, The Red Blouse will always hold a special place in my heart and soul. Moving forward will never change what the past has meant to me with that blouse. But, once the blouse had been "lost," I learned to move forward without my physical symbol of healing. In spite of difficulties and new challenges, I moved onward...trying to learn repeated lessons about the dangers and hindrances that come with trying to cling to old things, old ideals, and old hopes. I realize hard body is getting older and clinging to the past does not make us younger, it does not help us to regain our youth, it does not erase the disease or medical hurdle...moving forward is the mentally healthy path to being the best you can be right now WITH WHAT YOU HAVE TO WORK WITH. There is beauty in that ability and that knowledge. Take stock of it. Keep trying.

So, The Red Blouse might not fit me right now. It might not reflect the person I am right now, and that's okay. I have fond, beautiful memories of that blouse and maybe its sudden resurfacing has reinforced the fact that I can keep moving forward, in spite of the strong temptation to look back with useless longing or trying to force myself to be something I once enjoyed. No, I can accept the truth that the blouse might be rediscovered, but it now has no proper place in my life. In that respect, The Red Blouse is still perfect for me because it's again getting the chance to symbolize my growing strength and my ability to accept life for what it has to offer at the moment. And, I like this moment.

Monday, September 12, 2011

#93 - My Heart is Touched

I've found myself to be living a beautiful life in spite of Addison's disease and other major hurdles with my health. I am not a person you would look at and suspect that there was even a problem. Being able to "fake it until I make it" has been my mantra which translates to...even when you don't feel well or when you are struggling, the best route to take is to rise above it and carry yourself as if you are without such problems.

The truth is, there are days when this philosophy won't work for me because I just can't rise above my given situation, but you can be guaranteed that I am trying to lift myself up and out of it. Embracing the "fake it until you make it" mindset has been a life-saver for me because if I give in to how I actually feel and submit to my set of circumstances instead of trying to temporarily leave it behind for a bit, I would be smothered and defeated by my challenges.

When we have a family gathering, I like to join in on the fun. I'm not one to sit back and watch. Yes, I hurt. My body has been sliced and diced and pulled apart and rebuilt and it is a definite hardship to act normal, but I do it. The simple ACT of being normal can actually provide a boost of healing and mental equalizing that is needed to keep moving forward. Depending on your situation, the little normal act may simply be to read a book or to sing out loud to a song you always loved or to have a conversation with a friend and have none of it be about you or your problems.

Sometimes, I long to get out of the house and do something mundane, such as go to the grocery store. Even better, I love a leisurely trip to the library or to take a long walk in the park with my walking stick in hand. I like to go to the beach and look for shells. On our property, I have such a great time in the creek looking for beautiful stones. If I can swing a night out to see a live theater performance, then I am transported away from my aches and pains for a brief time...I refuse to allow the uncomfortable seats with my reconstructed spine discomforts to get in my way of enjoying the performance. This requires focus. I've worked hard to keep my mind headed in the direction I prefer, and let me tell you, for a person who has plenty of painful distractions, it is not an easy task.

One thing that I love to research and focus on are the triumphs and challenges that other people have worked to overcome, and I'm thankful they share their stories with us. Like my momma would say, "Someone else always has it worse." I look at the circumstances of people who rise above their misfortunes and I am given a boost to keep doing the same.

This week, I was going through old magazines in the house...cutting out decorating ideas, simple recipes I'd like to try and things I would want to remember. So, I was browsing through a February 2007 issue of Woman's Day magazine and I came across Ginger Zimmerman of New York. I read the short article next to her standing in a beautiful red dress representative of women making a stand against heart disease. I was stunned by her circumstances. If anyone can rise out of their circumstances and move forward in life through hardship, this woman teaches us that we can indeed do this.

Photo from website.
After reading this short article and cutting out the page with her story, I began to research her further and my admiration and amazement at all this woman went through is another gentle form of encouragement for me to keep moving forward in my own battle.

Ginger, a young woman of about 29 years of age had a beautiful life. She lived happily with her husband, David, who worked as an offshore oil surveyor in the Gulf of Mexico and they had three beautiful sons who were 13, 9 and 4 years old.

In 1993, at the young age of 29, Ginger began having chest pains and shortness of breath after simply walking across a room. Daily life had become a struggle. But a diagnosis would not come quick for Ginger. She, the same as in my situation, suffered needlessly because her physicians could not get past their "youth discrimination" barriers. I was amazed that she experienced the same thing I did...she experienced doctors who could not imagine anything being truly wrong with a woman who appeared rather healthy. It is difficult for a medical community to HEAR a young, vibrant woman describing her ailments when all they can focus on is her age and how she doesn't appear "sick" enough to warrant them thinking out of the box.

Doctors would tell Ginger that the extreme exhaustion she felt was due to a thyroid condition, which was an easy answer, and she was even labeled a hypochondriac. But, these answers were certainly not sufficient. In my case, I discovered that even though I had been suffering long-term and had been extremely pro-active in trying to get an answer from numerous doctors, I was facing a losing battle because too many doctors were incapable of listening to my symptoms, they even disregarded my carefully written lists that described my symptoms...most doctors were simply unable to go beyond their own limited mindsets that are more apt to label a young woman with an unknown illness as "stressed out" or a "hypochondriac." However, I was stunned to read that Ginger had tried for nearly four years to find answers as to why she was deteriorating. She knew something was wrong. Of course she knew something was wrong, but getting a doctor to listen to her and take her seriously enough to take pro-active diagnostic action would be the greatest challenge of all.

I was greatly saddened to read her story and to know that our battles to be diagnosed were so similar. It took me going into a code in the hospital before my treating medical team of the moment really got it...I knew what I had been talking about, I had been in the process of dying. It is always hard to hear of other people who had been seriously ill and suffered on top of it as they were misdiagnosed or shoved aside by ignorant physicians with crass attitudes.

No one took her seriously until it was nearly too late and she was dying, then they discovered that her heart was working at only 15% capacity. I can only imagine the shock, horror, and fear that she must have felt after learning that she needed a heart transplant. Living in the hospital, she had to be hopeful and patient for 3 1/2 months while waiting for a donor. This waiting time had to be agony because a heart transplant was her only hope for survival.

After the donor heart was found, her husband's company arranged to have a helicopter fly him to shore so he could rush to the hospital to be with his wife before she was taken into surgery for her heart transplant. He nearly missed seeing her before the surgery because his helicopter had been forced to make an emergency crash landing in the water. I can only imagine the sense of urgency and panic of the helicopter crew as they were going down, especially because they were trying to get this husband to his wife before she was sent in for her heart transplant. But, by some miracle, he survived the crash landing and he made it to the hospital as they were rolling her out into the hallway for the surgery. In the midst of her being wheeled into surgery, he was telling everyone that he was so lucky to be alive and told them about the crash...the reason for him running late and arriving at the very last minute. He got to be with his beloved wife before she went into surgery.

With a headache, David was able to see his wife before and after the surgery. I'm sure he was worried sick about his wife, probably hoping and praying that she'd survive so they could have another chance together. I'm sure he'd missed having his wife at home...she'd been in the hospital for months.

In an interview, Ginger says, "Little did he know that he'd actually suffered an impact tear to a small artery in his brain that would prove to be inoperable and it actually took his life nine days later."

Ginger had been able to speak with him one last time before he died as he was still at home, but about to head to the hospital in obvious serious condition...she had phoned him and could tell right away by his voice that something was really wrong. Ginger's niece, who lived nearby, rushed over to check on him and found that his eyes were dilated, his tongue was to one side she knew she needed to get him to the hospital. On the phone with Ginger, she relayed his condition and said there wasn't even time for an ambulance, so her niece quickly put the phone to David's ear for Ginger to tell him that she loved him for the last time.

Later, they would discover that her husband's impact tear, even if it had been discovered immediately after the crash, would not have been operable and they would have been forced to tell him that he would die. So, it makes you contemplate the series of if angels were watching over him and buying him borrowed time so he could be with his wife during such trying times. Maybe it's best that he didn't know he was dying and that she didn't know he was dying...perhaps the few moments they had left together would have been filled with despair instead of hope. Maybe the not-knowing was actually a hard to understand gift.

Stunned, I continued to learn more about her incredible story. In the magazine article, it saddened me to read her words, "I had a new heart only to have it broken."

After her husband's death, in the same hospital that had given her life, she had arranged to have David's organs donated. And as she was recovering from her own heart transplant, her husband's heart was transplanted into a father of three children, in the same hospital.

The ironies in this story are incredible. Her healthy husband died unexpectedly as she lay in the hospital after knowing that her only dying chance was a high-risk heart transplant. Her husband was consumed with being by her side through the worst, as he was dying himself.

Ginger Zimmerman is now a speaker with the American Heart Association. In an interview, she said something that women especially need to know, something simple, yet powerful, she said, "You live with your body every day, you know if it's not working right." So do not doubt yourself. If you KNOW something is wrong, then be blunt and tell the next doctor that you need for them to not brush you off or to blame their lack of knowledge on something mundane...they need to find out what is wrong. They need to put on their medical detective hat and get to work, even if that means employing the process of elimination.

Anyway, Ginger's personal story has touched my own heart. Her battles must have been seemingly insurmountable. The children's pain of suddenly losing their pillar of strength, their father, and then having a mother with such serious medical problems must have been devastating for them. This family has been through an amazing ordeal and I am encouraged by Ginger's determination to live as healthy and as fully as she can, in spite of ongoing challenges. I feel blessed to know her story.

Saturday, September 10, 2011

#92 - Remembering...Always

I cannot blog about regular things right now. My family is constantly giving our attention to hearing the stories of the 9/11 victims, survivors and of those who were directly impacted. If they have a story to tell, we have the time to listen. We honor each and every one of them.

Most of us around the world remember 9/11. We remember where we were, what we were doing, and how we found out about the attacks on our country and our people...we remember.

After you read what I've written during my heavy-hearted state of remembrance, I would like to know where you were when you discovered America was under attack...what were you doing and how did you first learn of these horrible truths? Each of us has an account of this historic tragedy and we should make our voices heard.

I learned of this attack during a very challenging time in my life. I had become seriously ill and was deteriorating quickly. On September 11, 2001, I could not know that within a month's time that I would be 33 years old and lying in a hospital bed, coding. But, on this fateful morning, I had made the difficult decision to drive my kids to school, even though my body was extremely weak. I wanted to do normal "mommy" things because it was becoming more and more difficult, for some reason. I just wanted to drive my kids to school.

My husband listens to AM Talk News and the radio dial just happened to be on his station as we got in the car. We didn't change the station and this was unusual because we girls always put the music on right away. As I was pulling into the Elementary school's parking lot drop-off lane, I heard the announcer say that the World Trade Center just had a "small" plane fly into it by accident. It was reported with a rather callous attitude that is so typical of big city news reporters...just another unfortunate accident to report.

Then, I suppose because the event seemed to be more newsworthy than initially believed, the station hooked the news reporter by phone to an eye-witness of the events - he'd called in and had a bird's eye view of the entire scene since he lived in a highrise adjacent to the World Trade Center. The caller was giving a vivid verbal description of what he'd seen so far and about how shocking it was to see the building burning. He even told the main news reporter that he did not believe it was a small plane that had crashed, but he believed it to have resembled a commercial jetliner.

I had dropped off my youngest and had turned the volume up as loud as I could stand. My car was stuck in the middle of jam-packed school traffic as I was waiting for my turn at the stop sign. Tension filled my body as I listened to this caller's wise, honest words. And as he was giving a repeat account of what he'd seen from his window during the first plane crash, his voice filled with horror and screams as he began to say that he'd just seen another plane, a large plane that looked commercial, probably with passengers, and it had just flown into the other building. He could feel the heat from the raging inferno. He had to get out of there. He was screaming and losing the ability to relay information due to rising panic. His voice was so filled with horror and terror that I was in disbelief.

The news station cut off the eye-witness account because of his disturbing description and because the fear in his voice was contagious. The station's reporter came back on and tried to say that there has somehow been two tragic accidents involving aircraft and that the weather or something must have caused the tragedies. I hit my steering wheel and yelled, "These were NOT DAMN ACCIDENTS!" I knew these were terrorists acts. I'd lived with a husband who served in the military on special duty as an Anti-Terrorist Police...I knew for years and years that America was living on borrowed time and that the terrorism would soon hit our shores. But, frankly, I thought it would start with bombings such as London and Paris had experienced for so long...bombs in trash cans, at sidewalk cafes, etc., but this act of terrorism went beyond what I had imagined would take place.

Within a couple of minutes after the stammering reporter had tried to convince himself and his listeners, with hope, that these were "accidents," the images would be on every television station and all illusions of these being "accidents" were shattered. You could hear the devastation in his voice as another announcer joined him and slowly edged him out. I'm sure he didn't even know what to say as he sat and watched the horrible scene, live.

Thank goodness that before the 2nd plane had hit (I believe) my daughter had exited the car. I didn't have any idea that the attacks would continue. I had kissed her goodbye with the hopes that our day would not be devastated by these is full of tragedy and we must keep going to the best of our ability.

My body was shaking. I remember stumbling when I exited my car to walk inside the house. My ears were ringing from the loud static filled news I'd been listening to for the past fifteen minutes. I walked in the door to find my husband in our bedroom watching television and the screen was showing the replays of the buildings being hit by planes. The replays were continuous, as if we would not absorb the reality. Strangely, my husband had the day off of work. It was supposed to be a day of us relaxing and enjoying solitude, probably with him going fishing. But, as we watched the live reports of the building in flames...we both knew, along with millions of others watching their televisions, that there would be no way fire and police rescue would be able to find much success with that level of destruction at such heights. I sat and cried, but Deputy Dave, at one point, jumped up and left the room. He had to go to the garage and find something to do with his hands. He was filled with a burst of rage. I think everyone felt helpless.

Little did we know, as we again sat together to watch the continuing destruction, that the buildings would fall out of the sky. America would never be the same. My children complained that afternoon because they had wanted me to pick them up from school during the day. But, I didn't. For good reason, I didn't want to give in at our level to the terrorist devastation. I did let them stay home the following day, but we each have memories of being in our particular place in time, as we were living our regular lives with such unthinkable acts taking place so far from Texas, yet so close to our hearts.


These devastating times will forever be locked into our memories, but the memorials being built to honor the innocent victims of these terrorist attacks will serve a great purpose to help future generations recall how regular people murdered that day throughout our nation became eternal heros.

Indeed, with the exception of some stanch military people at the Pentagon, most of the people killed during the 9/11 attacks never imagined, in their possible fear and suffering, that they would ever earn the title of "hero." The grandma going to see her grandchildren could not imagine she would die a hero. She thought herself to be a simple grandma. The young father and businessman did not see himself as a hero, he had taken the corporate route and was enjoying the fruits of his labor after so many years dedicated to furthering his education. No, he might have seen himself as determined, but not heroic. So many people, just like us, ordinary people, but they transformed that day from ordinary to extraordinary due to their horrific circumstances. In an instant...they became the hero in our eyes because it could have indeed been any one of us standing in our office, doing our daily job, yet finding ourselves under an unfair, horrendous attack.

Nonetheless, their tragic fates became our cry out for justice and for recognition of their ultimate sacrifice. All of the people that were lost to 9/11 will be remembered as those who represent us ordinary people. They were the ones who will be forever remembered because they were sacrificed while embracing democracy and its ideals...being able to purchase a ticket to your desired destination, being able to work at the level you worked hard to achieve following stringent personal dedication; being able to serve your country because it is your choice to do so; being able to be a proud mom because you know it makes a positive difference...each person that day represented our freedoms and the beauty it offers.

A twisted set of minds found themselves compelled to express the most ultimate form of hate against our freedoms...those minds would be the weak chain without understanding as the strength of energy and passion of enduring freedom surrounded the innocent ones lost to madness. The innocent ones would be our focus and they would earn our respect with eternal honor.

For us citizens in America, we found our hearts being torn out on this day as many of us watched as our fellow Americans...our family, our friends, our neighbors, co-workers, and ordinary people like us...die because of warped, evil mindsets.

But, we must not forget. This tragedy occurred on American soil, but people representing 90 other countries were impacted by this loss. The terrorists did not isolate their evil intentions upon America...they inflicted random, indiscriminate terror upon innocent civilians who were simply trying to go about their normal day. However, after 9/11, nothing would be "normal" again as ordinary citizens realized that they too might be called to duty, at any given moment. The duty would be unimaginable, allowing for no preparation and with no training or opportunity to get one's final affairs in order as a precaution. How do you defend yourself when confronted by a terrorist on the plane you are flying in?

Sadly, our fellow civilians found themselves under attack of vicious people who have no morals and no room for God in their hearts. When these terrorists link God in the same paragraph as their reasoning for inflicting murderous intentions and terror upon innocent not believe their lies. God is not linked with such evil minds. Those plots of the foundations of man's dark, selfish desires...not of, for, by or in the name of God. I feel rather certain that God does not appreciate being used for their selfish, distorted need for attention and for their lost causes. These examples of warped minds demonstrate that rogue free-will can opt to do foul things. Free-will should not be used to hurt others. To inflict harm upon the innocent is the most cowardly, selfish act one can imagine.

Often, I get choked up when I think about the Pennsylvania crash...of Flight 93 wrapped around those people who had purchased tickets to get on that plane and be transported to their desired locations, but they never imagined they were buying a ticket to terror. And who could have imagined that their final democratic voice would be heard loud and clear around the world? I think about those people in the cabin, knowing they were hijacked, knowing the country had already suffered "bombings" by commercial airliners...just like the one they found themselves flying in. They knew something had to be done because they were essentially doomed, any action would be better than no they took a vote. A vote. Under tremendous duress, the passengers took a vote to decide whether or not to take immediate action.

This vote strikes me as such an integral symbol of living with the freedom to make a unified decision. Until the end, in an ironic manner, the people on that plane were respecting the right to exercise their judgment and their passion and their beliefs through a vote. We know what the result was of that particular poll booth. This is the kind of vote none of us would want to face having to make. Such decisions and votes prove that having a voice is worth fighting and dying for. They had one of two choices...go down and allow the terrorists to succeed in taking out another American icon with hundreds and possibly thousands more with their plot or to decide to put a stop to the plot. I find it disturbing, yet highly honorable that their final voting booth was the plane. But, the decisive vote meant that they would not go out without waging war against the injustice being committed against innocent civilians. Innocent civilians that included all of them. Defense of their own lives became a matter to be handled directly.

I'm touched that civilians protected their fellow civilians on that day. First responders were the American People. Those ticket holders did more to protect, to honor, to uphold and to promote freedom and democracy than anything I can imagine. On the ground in the areas under attack, regular people were helping their fellow citizens.

Yet still, I am awestruck that under unthinkable conditions and certain fear, the passengers of Flight 93 became our heros. Not only did they save America from enduring another devastating strike, their voices were heard loud and clear around the world, in historic fashion. Their vote drowned out any evil intention of any terrorist. Their voice ended up as the most powerful one of all, the voice that embraced the freedom to vote and to take action against injustice.

The advanced warning that these passengers were duplistically fortunate enough and unfortunate enough to discover gave them the burning fire to act with bravery and with the understanding that their situation was dire, but those passengers refused to go out helpless. And so, they served us, the people...they protected the people who would have otherwise been murdered on the ground as well as in the plane. Those ticket holders on that doomed flight allowed the people who would have been targeted on the ground to have the chance to live another day and to buy many more tickets in pursuit of their own fulfilled dreams.

I'm so struck by the concept of their final ticket being our ticket to continued freedom and to letting the terrorists know that the American Spirit is collective, powerful and unable to be stifled; we still hear the cries of our heros loud and clear; we will continue to hear their vote forever, and we are thankful that American freedoms were exercised in the middle of terrorism that failed to do their evil intent on board that flight. Flight 93 had informed passengers who would not allow the terrorism to go further than their own suffering fate.

Sometimes, there is a horrendous crime in Harris County and it ends up in my husband's courtroom. I'll watch news footage about the case and be horrified while asking, "How could this person have done these things."

Many years ago, my husband shared some strangely poignant words with me, he said, "Quit trying to understand what they'll never be able to understand how and why they did what they did because you don't have a criminal mindset."

The terrorist's cause is forever lost...there is no understanding...their deeds had no purpose because such evil can never make sense. I do agree that there is a time for peace and a time for war, but pretending to be a passenger and then taking innocent people, including children, hostage so that more civilians can be murdered is not strategic war-time is a sucker-punch of the worst kind by the coward who knows that their opponent is fiercely capable. On our end, we are compelled to consider the catastrophic loss of innocent human life. We do not contemplate the terrorist's cause because they have no reasoning. As the old saying goes, "You cannot reason with the unreasonable." The random brutality of their actions that included ordinary, regular people to include the elderly, women, and children is the darkest kind of destruction.

As President Bush said in a speech following the attack on 9/11, "Freedom itself was attacked this morning, by a Faceless Coward."

The freedom of Americans...the freedom of our right to go about our daily life, to go to an appointment in the heart of your city, to go to work to sit behind a desk all day, to take a flight to see your family, the freedom to be an ordinary citizen of your country...the terrorist tried to snatch away our freedoms and the enjoyment they bring. But, they did not succeed.

Rudy Giuliani, in a speech after 9/11 said, "American democracy is much stronger than a vicious cowardly terrorist."

Amen Brother.

Some acts, some causes, and some behaviors have absolutely no justification, no reasoning, and no excuses. None.

Sometimes we're better off simply handing out justice instead of trying to dissect the criminal for an "ah-ha" moment. Yes, I know, the "ah-ha" moments may help prevent others from occurring, but nothing can justify certain actions. There are some criminals you must look out for while knowing that their random destruction has no rhyme or reason, only evil intent to destroy.

As my husband tells me about criminals...the same goes for murderous homicidal suicidal terrorists. We cannot understand their maniacal way of thinking. There is no explanation they could give that would make their actions make sense. There is no God who would condone such actions. There are no causes that would make the attack of thousands of innocent people worth the sinister efforts of faceless cowards.

It is a spineless, shameful thing to be responsible for the deaths of innocent people...our grandmothers, young mothers, brave fathers and little innocent children.

And so...the voices of those who died and those who helped others while being able to live to talk about it and those who suffered great losses of loved ones, of friends and of people who can never be replaced...all of these voices are the ones to last. Their memories and our stories are our strength...our own collective voice about this day that will fill us with compassion for those who never wanted to be called a "hero."

Friday, September 9, 2011

#91 - Is the Temperature Tolerable?

Since I have battled Addison's disease...a constant battle since it impacts every area of my life...I have found that I must be very pro-active with being exposed to temperature changes.

During my Pre-Addison's days, I could spend days at the beach and be happy in the sun and in the heat. Nowadays, I am unable to hardly walk outside where a blast of heat can literally make me weak, mushy, and as if I will collapse. My body simply cannot tolerate high temperatures any longer.

Going to the beach is no longer any fun if the heat makes you feel like you have the flu for the following few days. And getting a sunburn with this disease? The constant stress of the body having to deal with skin that is red and hurting is not a good thing for someone with Addison's.

Of course, a warm, breezy day would be a delight, but here in Texas, the past few months have given us too many days in the triple digits and those days are dreaded for most of us, but especially those of us with Addison's. We've learned to avoid the things that make us feel like crap and high temperatures are a problem-maker in my world, so I avoid the high heat. This means that I had to stay indoors nearly every day...only going out during the early morning hours or in the late evening. Which was not unusual when compared to my fellow Texans, turns out that many people in Texas were avoiding this miserable heat streak.

However, we are now experiencing pleasant temperatures and it is rejuvenating. Having the freedom to come and go outside, as I please, in mild temperatures if freeing. My body is happy and eager to savor these days while they last.

Just as I cannot take a hot day or a very cold day, the same goes for bath time. Before Addison's, I loved taking hot, hot, hot baths. The kind of hot bath that you could barely sit into because the steam burned you before the water ever touched your skin. I liked it hot. I miss those soaking baths that made my muscles feel like melted rubber bands of delicious relaxation. These days, I mostly take showers in warm water...not too hot, not too cold, but just-right temperatures to not stress my body into problems with my Addison's disease.

I have friends all over the world. Some of them are already battling cold weather. It's amazing to me as I sit here in my Texas residence and know that our winter is still a good distance away from being a reality. However, just as the heat makes me sick, the cold, cold weather can create similar problems with my Addison's disease. Any great change in temperature is simply a no-no with proper management of this disease. I don't just get cold and shiver with low temperatures, I shiver, become lethargic and feel the blood pressure start to sink and Uh Oh...there's trouble. Popping more HC is not always the proper route...sometimes you must learn to avoid the situations that would require you to increase the steroids. So, I avoid harsh cold weather.

This year, I plan on getting a new electric blanket to take the edge off the nights when I am literally frozen in place and unable to even speak because I am a tight mess of locked muscles. I've found that having an electric blanket ready to combat the chills is a big help during the hard cold months.

Temperature hardships are not to be taken lightly if you are trying to keep your Addison's disease regulated. You may not have to avoid it, but to decrease your chance of suffering through hard, sharp temperature difficulties might be helpful in your disease management.

Still, I enjoy a day at the long as it's not 105 degrees, and I enjoy playing in the snow, as long as the wind is not biting through my's all about using our intelligence and knowing what is best for our bodies so that we can enjoy as many strong days as possible.

And this morning here in Texas has been delightful. So far, I've let the chickens out of the coop, fed them, let the dogs run around, and I cleaned the chicken nests in the coop of their mess. Now, I'm ready for more eggs to be laid in the clean nests and that means delicious omelets this weekend. Omelets taste good in any kind of weather, that's for sure.

Friday, September 2, 2011

#90 - Finding Yourself After Addison's / Adrenal Insufficiency

Last evening I attended my first Addison's Support Group in Houston, Texas. Since this is a very rare disease, I already knew the attendance would be minimal, but I was determined to be part of the group. It's taken me over a year to finally make the trip to be there...a part of me was scared to go...scared at what I'd find...scared about what I'd learn, but I am so thankful I went; the visit allowed me to recapture of bit of the old me that was adventuresome, curious and participatory.

Beside me in this meeting, ready to make his own valuable contributions, sat my best-friend and husband, David. He has learned more about Addison's than can be imagined. He knows what to do during a crisis; he knows how to recognize symptoms of an approaching crisis; he knows how to make sure I get the best care possible when in an emergency room setting; he understands my battles and the devastation I've encountered; and he shares in my triumphs along with his own trials during our co-battle against this disease invading and wrecking our home. If you have researched Addison's disease, you learn quickly that many homes have been devastated by Addison's disease. Devastated beyond my comprehension. So, I'm very fortunate to have loving family who are supportive. As I've written before, my husband is my Comrade.

Dr. Tom Rodriguez is the charge person in these group meetings; he is the leader and organizer. We respect Tom because he's had his own battles with Adrenal Insufficiency since approximately 1995. I'd say he is very experienced personally and professionally with this disease. His research and valiant attempt to change current available data on this disease is amazing. I am so grateful that someone who better understands this disease is taking active steps to dispute so many inaccuracies presently on record.

Only one other Addison's patient was in attendance and she had brought her beautiful adult daughter, Heather, with her...which I found to be a strange link because my first-born daughter's name is also Heather. Besides Tom, the meeting organizer, the only two attendees in the meeting, both women with Addison's disease, both have daughters with the same name. Isn't life funny at times? It was beautiful to see mother and daughter so close, so supportive, so raw and honest, so caring about each other. Together they are experiencing the ups and downs of this disease and it has changed both of their lives. Heather ached for her mother's suffering while enduring her own suffering. This daughter probably knows more about Addison's disease than many doctors...she, like my husband, sees the reality of this disease first-hand.

My heart ached for my newfound Addison's friend because she is at the point in the disease when the struggle is mighty. For those of you who have had Addison's rip apart your life, then you know about the ensuing disbelief, sadness, anger, and you know about the chords of helplessness resonating deep within you. You endure all of it because there is nothing you can do to stop the Addison's disease from taking a mighty hold of your body.

Now, I do understand that a few patients have minimal effects after this disease is discovered, but my new Addison's friend had, as in my case, gone for an extended period of time undiagnosed and the prolonged deterioration took a harsh toll on her physically and emotionally...regular life was gone. Gone.

So, one of the hard topics of the night turned out to be how difficult it is to want the "old you" to come back, but as the years pass and you grow farther apart from the old you, it starts to sink in that maybe you'll never be back to the way you felt. Maybe you'll never have the abilities you had before Addison's disease.

Her and I had so many similarities with our disease progression that it felt as if I were looking in a mirror. Since I've had this disease for ten years, my heart cringed for her because I remember the 3-year stage and the devastation at realizing the old me was not being recaptured as I kept holding out hope that I'd find her again...that I'd wake up one day and suddenly the "old me" would be here again and the Addison troubles with pervasive exhaustion, joint pain, frequent nausea, body fluid balance troubles, mental confusion and other irritating interrupting symptoms associated with Addison's disease would magically disappear.

The realization that you cannot go back to your pre-Addison's state is devastating. I've written about how our idea of "recovery" is altered as we learn that this disease diagnosis, for me, meant that I would eventually become "stabilized," but not necessarily "recovered." This was extremely difficult to accept. I was defiant about it. I insisted that I would completely recover and even held out hope for EIGHT YEARS that I would BEAT Addison's disease ---- somehow. But, seeing the MRI with the words that my adrenals were not only atrophied, but completely "withered" was a huge wake-up call. I'm not going to grow a new set of adrenal glands. So, that dream of a complete recovery is impossible, so I focus on being the best I can be where I am right now with what I have at my disposal.

I have learned to listen to my body, to respect the new boundaries and to not feel obligated to explain my pulling back from society...I do what is necessary so that I may have as many good days as possible. And, even if the morning is terrible and I feel miserable, there's a chance that the afternoon will be marvelous. I've learned that my life is more of a roller coaster, but I can either fight it or go with the flow.

My new friend is trying to reconcile that her former self is a part of her past and the new her is something that can be better embraced once she's more stabilized with her Addison's disease. It appears that she is having trouble with balancing fluids and perhaps Florinef can be as magical as Hydrocortisone for her. Of course, finding the dosaging that is right for each person is a challenge...this is not a disease where we can test our levels and say, "Oh, I need another dosage right now." Unfortunately, we must learn the hard our body goes through health pitfalls.

Dr. Rodriguez made a great point when he discussed the difference in Addison might be stabilized and have little difficulties managing their disease while other patients might be "Brittle" which means they are more fragile with potential life-threatening episodes and it is more challenging to stabilize the disease --- for a number of reasons. Just as MS can find one patient living a full, normal life without any interference from their disease, but the next MS patient goes downhill rapidly to the point of it is with Addison's disease.

Unfortunately, with this disease, management is not always KEY to doing well. I can manage my disease perfectly, but still end up with disasters as my body's need for Hydrocortisone, etc., changes drastically, in a blink of an eye, too fast for me to barely respond at times. As with the rest of life, there is a lot of pure luck involved. Yes, life involves luck or we wouldn't have the old adage, "Life isn't fair." Some people are VERY fortunate and lucky to be diagnosed early so that they are not forced to suffer. However, others took a downhill plunge into unimaginable darkness before they were diagnosed. If you didn't go down into this darkness before your diagnosis, then yes, you are lucky and be glad for it.

Also, there are Addison patients who have other bodily complications that make managing Addison's a daunting task ---- other conditions can tax the body and this, of course, creates huge issues with an Addison's patient. Like I said last night in our meeting, "It can become a scary juggling act." Logical reasoning shows that the less complications you have with other conditions means that you will certainly have less juggling to confront in managing Addison's.

Anyway, my sadness at seeing a mirror image of what I'd gone through with having to basically say good-bye to the former person I'd been before Addison's disease was palpable. There is a mourning involved with knowing the old you is gone. Yes, a huge part of yourself  --- your core identity --- it's still there, but the core identity no longer has the same body as its partner. It's as if you are divorced from part of your self or a part of you has died. So, you go through all of the same emotions of mourning a unbelievable loss and it's just so darn hard to believe that things will never the same again.

However, the different future in front of you can be filled with joy as you learn to savor things in a different way. You learn to take the good moments and magnify them. You learn to discover new areas of strength --- such as for me, it's writing. Before I had Addison's, I'd always journaled, but did not focus on my writing as much because I was too busy with life. I love writing, but did not have the time to slow down to do it as I would have liked. Addison's disease changed that part of my life. Now, I write.

As for the personal side of dealing with Addison's on a challenging level is that the constant resistance by your body can create unknowns that can threaten to suck the joy out of you. After a few Addisonian Crisis episodes, you start avoiding social settings and avoiding going out because you do not want to go into a crisis around other people. You certainly don't want it to happen when out of your element. Needless to say, people around you will NOT understand an Addison's Crisis. Hardly anyone has even heard of this disease, so how would they recognize the symptoms of a crisis? This can lead to isolation, again, for the Addison's patient who is easily managed, this may not be understood, but even if you suffer from serious bouts of nausea and exhaustion, the troubles of this disease may cause you to withdraw to a certain degree in order to protect yourself.

Previously, I had thought this was a tragedy. However, now I see my life different and my social interactions are still present, but changed in a way so that I can have more control over my circumstances. There is nothing wrong with this. If you have a disease that impacts your ability to function normally, then you must adapt and quit letting the world dictate what is "right" and "wrong" for you. These days, I savor my independent, quiet times. I no longer miss the hustle and bustle of city life as a business woman with frequent socializing. I have narrowed my social focus and my life is actually more meaningful. Just because you are in movement and on the go does not mean your life has more meaning. My life, with lessened "out of doors" socializing, has become deeper and it has given me time to slow down to absorb life in a different way.

If you are one of those people who has been through a few terrifying Addison's episodes, then your life is changed. Period. There's no way around it. And I'm not talking about an episode that is just with nausea and diarrhea, I'm talking a crisis episode where you hit the floor and don't know where you are because your blood pressure has plummeted so fast that you didn't even have time to respond. After a few of those episodes, you change your activity direction. The lack of socialization can be can be depressing and the isolation can be enough to drive you nuts. Going through this stage of being helpless during a crisis too often can crush your spirit, but you have to re-learn how to live again...with the knowledge that your body might deceive you during the most inopportune moment. It takes bravery to go forward with a body that you can't rely upon. But, it can be done.

As I mentioned above, I've adapted and withdrawn from being in TOO MANY situations that might create problems for me with Addison's and I'm happier for it. But, I did have to adjust to my changed life. Maybe you won't be nearly as social as you'd once been, but you can pick and choose your moments to make an appearance and do everything you can beforehand so that you have a better chance to have a positive experience, instead of ending up on the floor or embarrassed by a hurried, unexplained exit. One trick that has helped me to deal with these stresses is to NOT CARE WHAT OTHER PEOPLE THINK about my choices for my health. If they don't understand and if they don't care to TRY to understand, then I do not care to educate those people---those are the people who choose to live in ignorant bliss, let them. Besides, how do the opinions of other people REALLY impact you anyway? It doesn't...not if you don't let it. Everyone is entitled to their opinions, but if you are doing what is necessary for optimal health and the next person is not understanding, then you must move on and realize that their ignorance is theirs to is not your problem. Live your life fully, as you see fit.

Finally, I've found that after I began to try to focus on other things instead of all that I've lost, then I was better able to move forward, but it's still not so simple to do. You'll never be able to take the intense focus off of yourself with Addison's disease because of the high level of self-regulation required for pro-active management. And, if you are indeed a "Brittle" patient, this can be much more involved than for a patient who gets up and does everything they want to do because their body, fortunately, cooperates on a higher level. Having more complications means that you will face more challenges, but you will also be stronger for it. I've found that Addison's has deepened my life on multiple levels...I'm not the same person, but in so many areas there have been huge incredible improvements that I might not ever have experienced if I'd not gotten so sick. This disease may have changed my life, my direction, my abilities and my focus, but I like who I am...I have a great deal to offer, I love my life and the simple, beautiful things around me still capture my attention. I'm thankful for all the love I've seen, the support I've been given, the chance to give support to others in need, and I absolutely love the new set of eyes I have been given since my diagnosis.