Saturday, April 30, 2011

#68 - Home First Home

Long ago, in my Pre-Addison's days, life was interesting. Starting out my marriage in Germany was not the way I expected to begin my life in the Big-Girl-World as an 18 year old grown up "woman." My husband and I grew up together, we knew we always wanted to be together and we still fight like kids today after nearly 25 years of marriage. I'm not yet 43 and have been married longer than not. David had joined the Air Force, we got married and ended up living several years in a quaint little German town, Speicher.

Our house hosts, a German couple, Peter and Giesla, lived upstairs in the old stucco house that had been converted to hold six different apartments. In the backyard we had a beautiful vegetable garden that Peter tended to almost daily. In Germany, I learned that placing a small bowl of beer into a little dug out, to be flush with the earth, would attract slugs and this would drown the little destructive suckers. Of course, beer is plentiful in Germany. In fact, I learned much of my gardening skills in Germany. My love of gardening was cultivated in Germany.

Peter and Giesla never had children and they were now in their 60's. All of their family had long moved to America. Their parents, their siblings, everyone close to them lived in America. And here was my husband and I, in the same boat. All the people we loved were in America. So, we all adopted each other. Every holiday, we'd get together and spend a few minutes crying together in our grief from separation, then we'd celebrate like no one can imagine! Mostly, this involved watching German TV together.

When our car broke down, Peter loaned us the money to buy another little used car at the local German auto dealer. He went with us and argued vehemently, as if he were our father, to get us the best deal. That car was probably the best car we've ever owned. Every month, along with the rent, we'd pay our little car note.

Giesla loved American clothes. My mother would constantly mail me warm clothes because she was worried about me moving from Texas to Germany. She would send Walmart colorful sweatsuit outfits. Of course, my mother always saw me larger than I actually was, so the size would be much too large for me, but perfect for Giesla. I'll never forget this tough German woman walking around in her hot pink cotton sweat suit with a flushed expression flooding her face, as if she were a ballerina with stage fright.

One day, Giesla had to drive me to base and I was terrified because I soon discovered that she was completely drunk. You see, she hadn't PLANNED to drive that day, but she did. Another lesson I learned the hard way, don't ask a German to drive.

I never drank, it's not to my liking, but obviously, she did more than her fair share of tipping the glass behind closed doors in our early days of knowing each other. Along the two lane highway to the base, she began to wildly weave, crossing over the side stripe until she hit a tall wooden highway marker. It jolted both of us into new awareness. What had I done? I'd never, ever, ever ask her to drive me any where again --- I promise God!!!

The marker completely sheared off the passenger side mirror. I sat petrified looking out of my passenger window at how wrong the day was turning. Once we arrived to the base entrance, the Air Force guards refused to let her through --- even though my husband was serving on a special forces team on the base. I did everything I could to get them to make an exception. Did you know that the American military is REALLY strict? Well, I was still learning.

This German woman in her German vehicle was not welcomed. Since she only spoke German, she made sure to make some hand gestures that were internationally understood while cussing them out in her German language. But they only made motions for her to turn the car around and leave. I wanted to sink into the seat and disappear. I knew these guys. They told me that I could get out of the car and come onto base, but there was no way I was going to leave Giesla behind after she drove me all this way...after all, I had to go HOME to that woman! My military identification card was not good enough for Giesla. She was a German national, not allowed access without major hurdles. I never imagined she could be so angry. She turned that car around and I learned a few new German cuss words on the drive home as I held tight to the door hoping we would not go over the edge.

Later that day, I was recuperating from the wreckless drive to and from base. Giesla went upstairs and I went into my apartment downstairs. However, peace was again shattered as I heard Peter's yells and deep anger. He had walked outside to our little, tightly packed household parking lot in the back of our pink stucco German home with white trim and he found his car to be oddly damaged. How could this have happened while he was napping?! He saw that the side mirror was missing and there was more paint and body damage down the side of the car. I was ready to spill the beans.

He came barreling back into the house with his red-faced head about to pop off his body as he screamed partly in German and in broken English about someone "hurting" his car!!!

I was ready to be the truthteller when Giesla suddenly gave a tender little innocent expression toward Peter and said, "The child and I have been home all day long; we have no idea who could've of done such a terrible thing."

Shocked, I snapped my mouth shut. I'd never seen such perfect denial in my life. But, I knew not to cross Giesla. After that day, Giesla got some more colorful sweat suits from me. Us girls stuck together. Poor, poor Peter! And the guilt remains.

As imperfect as life could be, I found comfort and solace in my home away from home. Pittering along the garden's edge as Peter pulled weeds and talked to me, I found another slice of Heaven. He always carried a basket to the garden, would pick his vegetables and carefully lay them in order, then store them in his cool basement. After three years of seeing his broken body create such a delicious bounty, I was hooked.

During World War II, Peter had been a very young Nazi German, captured by American forces. He had been so thankful for his capture. He would talk with me for hours about his experiences. I had an America grandfather who fought in World War II and lost his brother on German soil, so this was a topic in which I had been fully Americanized. After all, I was in Germany as a military wife. My grandfather came back a different man and with shrapnel shards permanently lodged in his back. I would watch him mow the yard shirtless and I'd be awestruck by the huge and countless purple whelps all over his back. When I asked my grandfather about these whelps, he'd tell me they came from the women in the family "whipping him." Little did I know.

So, I lived with Germans for three years. I worked for a German national on base. I grew to love the German people, but still kept a sense of anguish and hurt from generations within my soul. My grandfather was known for saying, "The only good German is a dead German." I cannot judge my grandfather, not after his extensive sacrifice and loss. But, living with Peter while in Germany brought me a fresh perspective. After Peter had been captured by American forces in World War II, they recruited him to be their cook. He'd laugh with such a riot when telling me this story, as if I were also his grand-daughter. He loved being their cook because he'd been a teenage cold and hungry Nazi, but now he had all he wanted to eat. He said the Americans treated him wonderfully, gave him all the cigarettes he wanted and since he was not actually born as a German citizen, this was perfectly to his liking.

As time passed through these years, I would lie in bed and listen to Peter's horrendous coughing. Our apartment was an exact replica of Peter's which was directly overhead. Starting around 4:00am, I'd start hearing Peter's deep hacking and choking from the apartment above. He'd worked in the coal mines during his younger years and had black lung. What did I know of black lung? This was something I only heard from the history books. But, our life in Germany brought it to full life. Ugly reality. I can say that his suffering was intense. He was drowning in his own lung fluids. Sometimes, I'd lie there and hear him coughing until he could barely make a sound and I'd cry for his struggle. But, we didn't mention hearing him. He never complained.

I had my first child in Germany. The Air Base in Bitburg was full, so an ambulance took me to Bitburg's Krankenhaus and there I gave birth with my German midwives. My daughter brought such joy to my lonely world in Germany. This was a time of no cell phones, no computers, no Internet...only very expensive calls home that cost several dollars per minute and were cost prohibitive. In fact, for most of our time in Germany, we didn't have a phone at home. We'd sometimes go to the old-fashioned phone booth in our little German town and in the freezing weather I'd call home and cry to my mother with home-sickness. Later, we learned to use the phone booths on base. very antiquated!!

Bringing my daughter home, Peter and Giesla presented me with flowers and gifts for the baby. Peter cried as we showed him the baby. He'd never been a father, yet he loved with all his heart. Oma and Opa they instantly became to my child. A special relationship in which my baby was "The Boss," was begun with earnest. All of us celebrated life more fully with this baby in our lives. Receiving one German Kuss after another made our baby feel loved and at home. She was our "liebling." Gielsa would look at Heather and say, "Das ist mein leiblingkinder," which basically means, "This is my sweet-child."

Our Heatherlein in front of her house with a neighbor, wanting to pet the dog.

Once the bittersweet day came for me and Heather to leave Germany, a few weeks ahead of my husband, I had to make a trip to the hospital to say goodbye to Peter. He was in the same hospital in Germany where I had given birth to my first child. His black lung was snuffing out his life, but he got up out of bed to kiss me and Heather goodbye while crying like a baby. Little did I realize, he would be dead within one month of us returning to America. I don't think he could take his "Schatzlein" leaving.

As my husband drove us away from the only house I'd known in adulthood and from my child's first home, I had turned in my seat to face the upstairs window where Giesla stood alone and pressed against the glass with her hand reaching out. And we drove off. I remained twisted and looking back until she was out of sight. It was terribly painful. Bittersweet is a perfect word to describe such moments. I ached, yet I longed to be reunited with my family in America.

Within a month of us returning to America, my real grandfather passed away. He had never met my daughter. He was a homeless alcoholic who had been very abusive to his own children and probably had no clue that I was living on German soil. It's probably better that way. It's complicated. Life can be weird like that.

My real grandfather --- beer in hand. 1970's --- he died in 1989,
a World War II Veteran and Hero, but a tortured man.
Oh, how I miss my village home in Germany.
Oh, how I miss the tough, yet tender people.
Oh, how I miss the changing colors and the autobahn.
Oh, how I miss Peter and Giesla, but one day...

My first home away from home couldn't have been sweeter. God gave me refuge in a place foreign to me. No one could have been more surprised than me at how this land would seep into my soul. To this day, we've had a vegetable and herb garden at all of our homes and it is a sweet reminder of our time in Germany. I don't have slugs, but I know what to do it they should appear. Danke Peter.

To Peter and Giesla, I say, "Ich liebe dich."
And love has no boundaries.

Friday, April 29, 2011

#67 - Life Sure Ain't Fair Mother!

My mother died when she was 57 years old of breast cancer. That was five years ago, and I was 38 years old. She fought with commitment and determination against those self-defeating cancer cells.

booster radiation,
port installed under the skin for constant injection access,
numerous chemo-therapies,
brain "target" radiation and more...
she kept going through each step in an attempt to kill the cancer so she could keep living. In the end, she would die and take the cancer down with her.

How could getting cancer ever come at a "good" time? Well, it definitely can come during worst times than others. More precisely, my mom's cancer came at a terrible time in my family's life. I had just been diagnosed with Addison's after falling extremely ill from severe deterioration resulting from a much delayed diagnosis. Most definitely, I had been in the hands of some of the most brilliant medical teams in the WORLD and my diagnosis was missed. Within days of being released from St. Luke's Episcopal Hospital, I was at home, going unconscious and was taken from my home by EMS workers with a blood pressure of 68 over 42 to a nearby relatively small hospital. Against the paramedics urging, my husband made a decision that helped to save my life, he had them send me to a local hospital instead of sending me back to Houston's large and renowned Medical Center. He followed the ambulance in his car, not knowing if I'd still be alive upon arrival. He knew that something was clearly wrong and we needed a fresh perspective.

To the smaller hospital I went and this is where I coded. On the cardiac floor, wearing a telemetry unit, I coded and the doctor ran a series of tests to discover I had Addison's. The small hospital spread the news of the woman who had been from doctor to doctor, from hospital to hospital, even in several big-ego hospitals, but it took this "smaller hospital" to unveil the rare disease. I was near death and this incredible cardiologist uncovered the Addison's mystery and I began a slow recovery that would have ongoing hurdles.

However, the extended time of living in an Addison's crisis and the long recovery ahead of me meant that everything in my life changed. My successful business went into the toilet. As I've said before, you cannot run a business if you cannot lift your head off of a pillow. My mother was constantly helping with my young two daughters and it was a trying time for all of us. My husband had no more time available to take off without being docked. I needed my mother. So, we made the decision to sell our house and move back into my childhood home. The doctors told me it would take me at least one year to become stabilized, so this decision was a no-brainer.

A choice formed from no choice.

In my mother's home, I was able to rest as needed. All schools were within a very short walking distance from their house. This is the entire reason my parents purchased this home after we had moved back to America from living in Scotland. My mother was disabled and we kids had to look out for ourselves. Getting to and from school had always been our own job, no matter the weather. So, living in this house, again, was helpful because my precious daughters were able to walk everywhere --- to school, to church, to their new friend's houses and my parents had a pool in the backyard, big bonus. It was more tough than I can express to move back into my parent's home, but it was a wise decision.

After about a year of living there, I had begun to regain strength. To get out of the house and to allow myself continued control over the "bad" days, I began to substitute for the school district. I loved being with children. My life was certainly different. I was making markedly less money, but I was happy. Then, one day, my mom found a lump in the lower portion of her breast, close to the sternum. She had mammograms every year but they did not detect any lumps, yet they were definitely present. M.D. Anderson sent her for an MRI and the truth was confirmed over and over through several different had cancer...invasive carcinoma.

The day she received the phone call, I was home, not feeling well. Lying in bed, I heard the phone ring, heard her answer and then all went quiet. I just knew. I sunk deeper into the mattress, knowing it was THE call. After a few minutes, I walked into her bedroom and she was sitting in her wheelchair with her head down. It was a defeating moment.

I put my hand on her shoulder and she raised her one good arm to hold my hand and she said, "It's cancer." We hugged, but I could not cry.

From that day forward, I knew that it was time for us four to get out of my parents way. Deep down, I knew they had limited time together and as much as my mother actually enjoyed having us there, I knew they needed as much privacy as possible. I personally knew how strained a marriage could become when one of the partners becomes seriously ill; I didn't want them to feel as if they were under a microscope. The strain in the house with two women battling illness was just too much. I don't know if my dad could've taken much more.

Most of my adult life, I lived a few blocks from my mother's house. But, during this time, God blessed me to find a house for us to purchase that was only six houses down from my mother's house. That was an incredible journey of its own. We made renovations and moved down the street. We were close enough to help my mother daily, yet remained far enough away to give mom and dad their space. So, it turns out, my mom and I helped each other through our battles. I often have moments of feeling incredibly sad that our last years together were incredibly marred by illness, but the cancer and my rare disease also served as a catalyst in promoting a closeness between us that surpassed any normal bond. Plus, our mutual warped sense of humor carried us through days that would have otherwise been dark and dank.

The "staging" report of her cancer gave us such good news...increased hope for more time with mom! My mom's cancer was found so early -- it was charted as "Stage 1, possible Stage 2" and she was expected to have wonderful odds in her favor.

Treatment was almost barbaric. That's what I had thought as part of her breast turned black as radiation progressed. The doctors said that they didn't see this side effect very often, but my mom had obvious reddish and burnt tissue from the radiation. As for the radiation, in the beginning, we found it fascinating when they "tattooed" cross-hair markings for the radiation machine to delivery its beam with precision. However, we knew the situation was grave. Mom and I had many, many trips together to M.D. Anderson so we could go to the basement for her radiation treatments. I hated that her veins were pulverized. The chemo made her hair fall out in clumps. We may have come a long way in science, but it is still brutal to be on the receiving end. I learned that no one talks about the realities behind the scenes with breast cancer. Since no one in our family had ever battled breast cancer, we all felt blind-sided and totally unprepared. This experience has contributed greatly to me finally opening up about my Addison's more silence that turns into secrets. What about others out there who are trying to find their way through the rareness of Addison's? Breast cancer in my mother helped me to wisen up.

After the good news about her initial Stage and treatments, the total opposite of what was expected is what occurred. She went downhill rapidly. After she'd completed all treatment and went a year "cancer free," she began to have joint pains. I tried to convince my mother that it was related to her body being disabled from the Polio that had crippled her at a young age. The ongoing ramifications continued as Post-Polio Syndrome made daily life more challenging.

However, I took her back to see her M.D. Anderson doctor and they decided, as a mere precaution, to run more tests. The doctor said it was "highly unlikely" that the cancer had returned, but that was far from their shocking findings. Eventually, the experts at M.D. Anderson suspected that her body had endured so much already that it simply was not strong enough to fight the cancer. In fact, the chemo treatments seemed to have left her body more weakened than with normal patients. Of course, she didn't start out as a "normal" patient.

It wasn't fair. Looking back at how she had survived the Polio Virus, I was numb. My mother always triumphs. Geesh...At five years of age, my mother had lost her ability to walk, to run, and her lungs were too weak to sing. The Polio Virus invaded her left arm as well and it would never be useful; this arm was smaller and remained permanently out of socket. Us kids would never know what it feels like to be fully hugged by a healthy two-arm strong mother. We'd never jog, run, or play around in a way that required legs with our mother. We'd grow up with a mother that drew strange looks and we learned to deal with the anger felt when someone made careless remarks about her appearance. But, my mom's one arm was nearly super human in strength. No other mom had an arm like that mad-dog!

She had one working leg, her left leg. The right was paralyzed by Polio as well. She was a semi-hemi pelagic that could hobble along for years, until her body no longer cooperated and became wheelchair bound. In fact, we grew up with wheelchair ramps, leg braces, various wheelchairs and electric lifts for vehicles and on and on (she could only go out in an electric chair because she only had one usable arm and one usable leg, so she would go in circles with the push type). Therefore, the cancer seemed incredibly unfair. Go pick on someone of your own strength - stupid cancer!

Mom propped against the tree for this photo.
Staying at Gonzales Hospital.
At her diagnosis, my burly dad cried in my arms. How could this happen to a woman who had battled nearly her entire life against medical hurdles? How could this woman who had overcome every imaginable obstacle be taken down by cancer? She had survived the Polio virus, a virus that killed so many others and now she was being assaulted by cancer. How could this woman who spent ONE YEAR in an iron lung end up with tiny lumps that were made up of mutated cells that multiplied and took over her body?

Horrible - Jr. High Days for me, Homecoming and
my Burly Dad. The neighbors didn't mess with this man.
Still don't.

Burly dad - early 1970's here in this shot. No scary facial hair here!'
He was about to leave to work on Off-Shore Oil Rigs in the North Sea.
She had rang the bell at M.D. Anderson to signal the end of her "successful" treatment. But, about one year after being labeled "cancer-free" she began to feel pains in her joints that turned out to be cancer that had was in her femur, her skull, her rib cage, her spine and in the base of her brain. It literally spread like a wildfire. For my mother, a woman who had a Master's Degree in Education, the cancer reaching her brain was the worst. She wanted her mental capabilities to remain intact until her dying breath. The body disintegrating...she could handle. She'd already been through that, but the ability to be mentally clear...that was an untouchable area that she could not contemplate. Thank God, there was mercy upon her in this area. The Lord did not give her more than she could take. She could take dying; just not the absence of knowing she was dying.

In less than three years from her "Stage 1" cancer, the ordeal was over. My mother peacefully died from her home, as she wished. I had one breakdown as I went back into her room to inspect her body before my brother and sister and the other grandchildren arrived. My cousin Laura had lovingly combed her soft hair, put a tiny bit of lipstick on her lips and my mother did not have one wrinkle, at 57 years of age, no wrinkles.
Delicate mother -- now has the three children she wanted
after ALL doctors told her that it would be impossible for her
to be able to maintain a pregnancy or give birth.
She defied the odds...three times.
Laura worked as a critical-care nurse and would not let me prepare my own mother's body, as I had been determined to do. Is my family unconventional and somewhat old-fashioned in these areas? Absolutely. These things were once a normal part of a loved one's death. The dining room table had once been used in our American history to display the loved one who had passed. It was not a corporate affair. Now, we hire out for everything and most often, it is necessary. However, our family had an odd sense of determination to protect my mother from the hands of strangers.

This day of her passing would be her only memorial with her body for viewing as she had strict feelings against being on "display" in a coffin. She didn't even want friends to see her after she passed away. She believed in dust to dust, the faster, the better. I guess she had felt like a guinea pig for her entire life and once she had entered eternal rest, she truly wanted to be left alone. We honored her wishes. So, my cousin Laura had put her foot down against me prepping my mother's body for the rest of the family to see and for this, I actually am forever grateful. I could have done it, but to walk in and to see my mother looking exactly as she would have approved was a beautiful gift my cousin gave to all of us. Peaceful, with her babydoll face, my mother laid in her room with the sun shining through the windows as she loved and her body was no longer tense with pain. She was free. She was running. My mother, for the first time since five years of age was again running.

I wanted to cry for my mother. I could not do more than one cry because my left lung was collapsed from a recent Cardio-Thoracic surgery. I did not have the lung capacity to handle the heaving that would come with immense sadness. And, I had to be careful to not end up in the hospital with an Addison's Crisis on top of what my family was already enduring. Tending to yourself when losing your mother is not easy, but it was my job to make sure a hard situation did not become more complicated. Thankfully, I was strong and able to get through this very rough time with proper increased stress doses to combat the lack of sleep, the exhaustion, the huge toll that the emotional stress of losing your mother can cause...I remained diligent, for my children.

Why do things like this happen? How could we go from me fighting for my life and my children living so concerned that their mother would die to then find their adored, attentive grandmother dying when they still needed her the most? My family had gone through one huge battle after another and it seemed to be too much, but we all kept going. Uncanny strength is our heritage and I kept remembering this as I continued onward, without my mother, because great battles were headed my way. I would not give up. Through the worst of the worst, I would do my best because I had learned from the best.
Big Burly Dad AND Grandpa living happier days.
Here at oldest Grand-daughter's College
graduation from Texas A&M, Biology Degree

Thursday, April 28, 2011

#66 - You Feel the Parade?

I've had one too many health battles through the past years. Since my diagnosis with Addison's, there has been a near continual onslaught of health issues that I have had no choice but to confront. When I hear people say, "I don't know how you could go through that; I could never make it," I am amazed and in disagreement because when you have no other options but to go through get going.

Still, after all I've been through, I still see myself as my own person with a core identity that is disease-free. Yes, I have Addison's, but it is not WHO I am. Admittedly, some days, I am tired and it feels as if Addison's is the triumphing part of me, but I constantly work to remember that this disease is not who I am, it's only a part of who I am. This disease is not like a pair of uncomfortable shoes that I can remove at the end of the day, it stays with me, and I had to make my peace with that fact. I had to find a place for it to reside within me while denying it power to take over my entire existence.

In the beginning, I did have denial. I had a terrible time adjusting to this disease label. I was rebellious and questioning and disbelieving and difficult. But today, I've learned to not deny this side of me because this disease has helped to shape and mold the woman I am today. And, I like her.

All of the experiences with Addison's has brought depth into all areas of my life. Even so...Has it taken from me? Well, yes it has. There had been a huge level of loss before I could again start the journey to find myself after this disease caught me fully in its unmerciful grasp.

There have been big changes in my life provoked strictly because this disease knocked on my body's door. It tapped, knocked, pounded and then busted its way in uninvited. I had to face the intruder and do some fighting back, but after the intruder ransacked my body, I was eventually able to clean house and to make adaptations that would encourage the intruder to reluctantly stay in its little guest room. I feed the intruder special pills to keep it tame and I take care of my body so that I can feel the subtle signs of when the intruder has roamed out of its confines. If I can sense its roaming, I respond with rehearsed strategy. As the Addison's intruder steps out of confinement, I've learned to sound the silent alarm and swing into motion.

The Addison's intruder no longer has such an easy time creating havoc, but he can still be sneaky and destructive with a rapid assault. I must stay on guard. His environment is kept unconducive to his thriving nature and this helps me keep him sedated, in his corner. I must stay hydrated, keep my potassium regulated, make sure my body is in regular motion so I don't lose physical power and I take stress doses as needed, kind of like reloading the clip and firing another round toward the approaching intruder in an effort to keep him retreating. I take Addison's seriously. I started off with this disease on the bad business end and that means I had a fast realization of the devastation it can cause in all areas of your life.

All of these lessons in life and the strange "regimented flexibility" has started me on my journey in Finding Lana. The old me did essentially pass away as I laid there for months so sick, undiagnosed for too long and watching my life fall apart. I wanted to bound upward, be my old self and recapture all that was disintegrating around me because of my deteriorating health. But, I could only lay there. In many respects, the old me faded away, but simultaneously, a brand new me was starting to take its place.

How am I a new person? It is difficult to explain. Things I took forgranted in my Pre-Addison's days are no longer passing me by quietly. I have a different internal working; there is often a parade inside of me sounding at the most simple moments. When I am sitting at a dinner table with my husband and two grown children, the parade inside me is in full performance...the band is marching with high knees and the cymbals are clashing with excitement. I hold my niece and read her a book while the parade inside me has gymnasts doing backflips in unison and the drums pound deeply and beautifully. Late at night, my husband, in his sleep, reaches his leg over to touch mine, I feel the parade and the breath-holding expectation as twirling batons fly into the air and are always caught perfectly after rushing back to the owner's hand. It's exciting, beautiful, suspenseful, and never boring.

Jumping into the Parade and living it up with old Abe!!
The difference between the old me and the new me is that everything is constantly in motion as I am seemingly so quiet and still. A perpetual parade marches with happiness in my heart and soul because I see all these tiny moments of life as reason to celebrate. It is sometimes difficult to explain to others. Once you have lived for so long dangling from a black thread, without answers, and you know the heart in you is beating with borrowed time and the struggle to remain conscious is your priority, then you begin to see things around you in a different way. Live like this long enough and the changes within you become permanent. Have a chance to come back and to rebuild your life...get a real chance to regain control over your body and your ability to hold your head up and to focus your eyes where you'd like....then you'd also find that the old way you saw things is another part of the old you, it can't be helped.

The Parade still goes on, from these Pre-Addison's days until
my current life with Addison's and the Parade living WITHIN me!
This is a difference between those who have been given a label and are still virtually moving horizontally all the while compared to those who have fallen into a mysterious pit of suffering for an extended period of time and being brought close to death...those getting a chance to emerge from the pit have a vastly different experience to draw upon. You were given the opportunity to return and search for your new life. The old life is likely left behind in the pit. You emerge to find that your eyes and heart process everything in a newfound manner, and it takes some adjustment.

I was in that pit for far too long and I know what it means to be in that dark place. Beyond a dark moment, I sunk into a place where my normal world turned upside down. My strong youthful body failed me. The unthinkable found me. My life as a daughter, wife and mommy was overshadowed by needing to be a survivor. I was forced to let go of all I had known, but I finally decided to go with it and this probably saved my life and helped my family.

As a teenager, I took water survival certification courses and learned valuable techniques for surviving worst case scenarios in the water. I found this situation to be similar...If you are caught in a current, don't fight. Relax, go with the flow. Go against all that is natural and if possible, float. While chaos is below you, lay back and float. Or, if the waves are too powerful, take a deep breath of air and let your head go into the water and completely relax every limb --- volunteer to be a ragdoll. Then, simply raise your head as needed to catch another breath of air and go back into the downward ragdoll position. Relax, don't even tread, you won't sink. I've done this in the ocean and it works. The point is...don't fight. Find your place in the chaos and be a part of it. Again, it goes against all things natural for us to embrace this kind of approach during an attack. Learning to fight in a different way is imperative. So, when I emerged after Addison's invaded my body, I found myself closer to God and further away from this material world. I gave thanks for this beautiful perspective of life, I am grateful. Thankfully, I did not have to grow old to gain this perspective...I simply confronted a near-death experience and came out with my vision and soul powerfully tweaked.

In so many ways, I am a stronger person, yet physically weaker; I am more patient, yet have more boundaries; I am more compassionate, yet have more expectations; I am more of a fighter, yet my strategy has changed; I am more of a drifter, yet have more purpose; I see material items as truly bits of plastic, wire and cement; I see a person's eyes and there is a deeper understanding that I sometimes wish to not be able to see so easily; I see "time" as a concept that encompasses much more than actual technical tracking of recorded is a moment that will never return and should be seen as opportunity and savored; I no longer see a white coat and a stethoscope with blind trust and I no longer automatically insert a possible non-deserving pedestal under the white coat's feet---these days, the ground is completely even and I am respectfully in charge; best of all, I live in the here and now while never feeling alone because I know God is always with me and all will be okay, no matter what happens. All will be okay, no matter what happens

Just getting the "label" of Addison's Disease would probably not have been enough to cause pivotal changes in my life. That's the difference for many people with many different conditions. The further down into bad health that you have fallen, the more deeply your life is impacted. It's pretty simple.

For me, the struggles stemming this disease has been far and wide. Addison's has nearly taken my life on multiple occasions. In the beginning of my original diagnosis, I was already going through huge changes due to my body weakness; Addison's had fully seized my life in all ways. Finally, after being diagnosed, I had so closely approached death that it would not be possible to simply bounce back. My body had suffered trauma for much too long. I was far, far away from the bounce-back phase. So, going back to the status quo that I had enjoyed in my Pre-Addison's days was no longer a possibility: those radiant days had become a hazy memory.

For a long while, I floundered during recovery and longed for the way my life used to be. But, I knew life would never be the same and that I needed to face my new existence. I needed to somehow face and embrace this new life before I could figure out how to move forward. Before I could really begin to vivaciously live again, I needed to say goodbye to the past and quit longing for my life as it had been.

I didn't know what the future held, everything in my life had been jolted off course, my business-life, my personal life, my home life, my marriage, my thought-processes...all of me, all around me, all that I contributed to in a passive or active manner was completely different. Was it easy? No, it was not easy. Was it a fast process? Absolutely not, I'd say it took about two years for me to really get back on track and in some ways, I am still Finding Lana after my life disintegrated from Addison's nearly pulling me under life's radar. But, I did it. It can be done.

Having the ability to remain flexible might help you regain more than you lost, but it takes time. I had my life turn upside down and inside out after being sick for an extended period of time and by falling so deeply ill with Addison's that I coded at age 33. The recovery after diagnosis was not a short road, it was a long road without nice smooth pavement. My journey was full of rocky pits, but it doesn't stop me and each step is a triumph for me...even while taking small steps toward Finding Lana I can hear the parade's beautiful celebration propelling me forward in rain or shine!.

Wednesday, April 27, 2011

#65 - Good Video for Administering Emergency Injections...

Of course, this blog is not about giving medical advice, I believe most people understand this ground-level basic foundation for my's about sharing anything that might help those with Addison's Disease, etc. and to share the emotional hurdles of living with this rare disease. But, the following video is about giving an injection and it has some good parts about handling an emergency situation. If you've not had to give yourself an injection or your family members have not had to do this might be good to watch together and to sort of "plot" the appropriate locations on your body beforehand. Make it a fun gathering!!

#64 - Video about the Mystery of Addison's and More

I found this video to be humorous...the search for what "Addison's Disease" really means!!!!


Here is another video about a woman and her dog that can detect low cortisol levels!!!!!!! Karen and Coco!


Touching video tribute of a father with Addison's by his son.


The first portion of this video is a doctor taking a question about "natural cures" for Addison's Disease


Just plain weird - an author penning sections about an "Addisonian." Don't know if I'd attempt this read...confused on what is about in the first place. I should do more research.

Monday, April 25, 2011

#63 - Wow Weekend

Having a "normal" day is pretty exciting to me. During my pre-Addison's days, I didn't think a "normal" day was noteworthy.

Now, I silently rejoice when I have days with regular blood pressure because it is something I never take forgranted any longer. Pre-Addison's, my blood pressure controlled itself. I didn't even think about it for one second, it was a natural event that defined self-regulation. Beautiful biology.

So, this past Easter weekend has been incredible. I had a rocky start last week and was not happy because I needed every single free moment to prepare for the out of town company, the large gathering, and all of the house chores that were going to be necessary. But, as I laid there not feeling so great and watching the time tick by, becoming more stressed about everything that needed to be done...I also kept reminding myself that tomorrow would be a brand new day. And, I was right. The next morning, I woke up with abundant energy and for the next several days was able to constantly stay in motion.

After having a huge Easter gathering at our home and rooms upstairs filled with out of town guests, I am still feeling incredible and am thankful for every good day that comes my way. It's one of the great hopes that I would like other struggling Addisonians to know...each day is truly a new day. Having one bad day doesn't mean the next will necessarily be the same. For this I am thankful.

Wedding dress shopping. Not a contender.
Easter Weekend 2011 beginning...Good Friday.
So many people attending our parties tell me that they could never have such an event at their home. It's not the party itself that is the dread, it's preparing the house for so much company and the cleaning that comes afterward. But, I can't imagine not doing this. My family and friends are my joy. My oldest child is a college graduate and is now a Biologist in a lab; she has a fiance and I am very thrilled when they make the one-way drive for five hours to come visit the old parents. My husband and I told our daughters while they were growing up, "We'll always have your room ready and waiting." Following through with this is not as simple as saying words, it takes action. It might not be the exact room they grew up in, but it will be updated, yet full items that hold childhood memories. Spending high quality time with our grown children, under one roof, is a blessing for each of us. In a blink of an eye we'll be also needing an extra room for the grand-children and I'm already getting prepared!! (No rush girls!).

My niece, Shaye. Playing in her cousin's cowboy boots.
My mother always said that having children is a chain reaction and a lifelong commitment. Yes, it is. Above everyone else, my mom always kept a place for us in her house. Our children will eventually acquire spouses, then we often gain grand-children, sometimes potential step-grandchildren and more visiting family pets. It can be nuts, but it sure is fun...and we're just getting started. This is a wonderful chain reaction. My daughters are not little girls any more. The "bunk down together" days are over, they are no longer tiny children. Times have changed. They are awesome women and having space in my heart and my home for them will always be a priority.

My oldest, Heather & her fiance, Henry.
I know some parents who love being with their grown children, but they get rid of extra space so that the kids will stay gone. For some parents, I can appreciate that approach, but it will never be my path. Another tidbit of wisdom my mother had given me was, "It is difficult to down-size as the family is up-sizing." My two children are already in chain-reaction daughter is engaged and the youngest is 20 years old with a really GREAT boyfriend. Things are ever-changing in a great way.

My youngest, Stefie, with her boyfriend, Brice.
A harsh life fact that I've already faced is that I'll be able to down-size when I'm too old or too feeble to host a gathering or to walk across a large living space. May God bless me to one day grow this old, then I'll be taking a seat in other people's homes for such gatherings, but I certainly won't pre-plan to live too scaled back before my time.

My husband's little niece, Aimee and his grand-nephew, Jace.
Of course, Howdy the big dog is part of the crew.
My mother never down-sized. Until her dying day, she went through the trouble and the joy to make room for her children, so we could gather and treasure each moment. She enjoyed life and did whatever she wanted, but she didn't ever quit being a welcoming mother. I am thankful that we always remained her priority, no matter how old we grew. All three of us were in our 30's when our mom died, yet we had lifelong assurance that our mother kept us close to her heart and home.

Me and my oldest daughter, Heather. Easter weekend 2011.

Me and my youngest daughter, Stefanie. Easter weekend 2011.
So, if you are coming into town, we have a big house with extra room, but our grown kids are #1 on the room reservation list. As one of my favorite comics, Lily Tomlin, used to say, "And THAT'S the truth." Period.

Heather and Henry eating mom's fresh Pesto.

David and his grand-nephew, Jace.
Easter weekend, 2011.

Wednesday, April 20, 2011

#62 - Can You Tell?

There have been times when I have had an Addisonian Crisis hit me so strong, from a sitting position, that I can barely hold my head up and cannot keep my eyes open. Sitting on the sofa, I cannot say a word to convey my predicament, and I suddenly cannot get up to do anything about it. It can hit like a lightening bolt and leave me trapped in my body like a ragdoll.

Everyone is busy doing their own thing. My husband is outside in the backyard. Leaning back on the sofa, I am sinking further into my skin as my blood pressure plummets further and prevents my body from being able to yell, scream, or shout for help. These are moments you know this disease is deadly serious. It's not about how "strong" you are or how it "never can happen" to's about this disease randomly showing its ugly teeth and holding you in its relentless grip.

As my husband walks through the backdoor, I try to open my eyes and to make a sound, but my body is already in the depths of an Addison's Crisis; I am drowning. Barely, I see him stride past me with purpose as he glances over at me. Little do I know, at the time, he thinks I've simply laid back for a little catnap. He has no idea that I am IN THERE SCREAMING for him to realize that this isn't a moment of resting my eyes. This is life or death; I can feel my life dangling, but I cannot force my body to do something it has forgotten all about. I am swallowed up.

Lying there captive to my own body, I finally realize that all my internal combat will not do me any good. All it will do is cause me to sink further away, at a faster rate. So, I quit trying to open my eyes, I quit trying to struggle against the natural course that my body has unnaturally followed. I drift off. Now, when my husband passes by and sees me napping, I am truly knocked out, but not by choice. Somehow, I let go and by God's grace, so far I've always been able to slowly start finding my way back.

As soon as my body will function on a slight level, I stumble upward to get to my emergency dose. Taking it, I relax until it kicks in and then I find myself a new woman. A sort of rebirthing process has silently taken place and I can't help but rejoice for the new beginning I've been given.

Later, after I tell my husband that I had been in an Addisonian Crisis as he strolled past me in the living room, he is thoroughly upset.

He asks me why didn't I tell him?
Well, I could not communicate.

He asks why I didn't take a stress dose sooner?
Well, if I'd known an Addisonian Crisis was going to kick in so rapidly, as I was sitting down, I would have flown into action...there were no typical warning signs this time around.

Then, he makes the most disturbing question of all...
How could he have walked past me and not have known that I was in crisis?
Well, a person napping does not look as if they are in a struggle, they look as if they are peacefully sleeping.

My husband has found this part of being a partner to an Addisonian most difficult. The times he looks at me and thinks all is well, then discovers I am in crisis mode is very unsettling. There is not always a flailing, a physical drama of indicating there is a crisis underway, there is usually an absence of the shout "get the stress dose!" and there is often no cut and dry warning signal to make this disease easy to live with.

This past weekend, on our land, I had been through a night in the 40's without heat and in the morning I went into crisis. The main problem was that I was in a tent, my husband was a couple hundred feet away and I had gone so far down as to be encased in brain fog. However, my body was still somewhat awkwardly operational, yet not fully cooperative. I had managed to get outside the tent and to take a seat and to feel the increasing warmth from the sun. He walked over and sat in the chair next to me and began talking.

Suddenly, I felt like passing out. I knew my body would not remain in a sitting position for long, so I suddenly tried standing up to make it back inside the tent and to my medicine. I'd already taken an early morning dose of Hydrocortisone, but knew I needed more. I literally jumped up to move to the tent fast because my body was about to go into another state of existence, I've already learned that there is a point when my body separates from my mind and that is when the body simply won't cooperate, per a typical Addison's Crisis.

Yes, I was in a rush to beat the crisis from taking hold. My husband gave me a strange look and stood to help. He put his arm around me and it was then that he realized I was having trouble taking steps and that my body was shaking with weakness. In the tent, I immediately reached for the Hydrocortisone and gave myself another huge stress dose. I knew I would be okay; I had gotten there in time and just needed to relax. Meanwhile, my husband had gone to my purse to get my emergency injection. He was shaken from sitting so close to me and not realizing that I was going into a crisis. I wish to have grown purple spots from head to toe so it would have been clearly evident, but that's not how this works. He can't beat himself up over it, such is life with an Addisonian. It can be a roller-coaster for those of us on the dark side of the wide spectrum of affliction.

That afternoon he told me that every person who lives with an Addisonian should realize that the signs of crisis might be non-existent to outsiders. At times, it can indeed be clear that there is a problem, but during that initial phase of slipping into the crisis it might be subtle and without a neon sign and foghorn directing attention to the problem. This man knows me. I've been married to him for nearly 25 years, but this disease is like a sly fox. It can sneak up on the person with the disease and surely fool onlookers, even medical doctors. This is why it can be difficult to treat. A person in crisis going into an emergency room does not always look as if they are in the right place. Medical staff who do not understand Addison's cannot comprehend that a quiet, healthy-looking person can be fast approaching death. Unfortunately, that is often how it works.

There are people with Addison's who never experience a full-blown crisis, then there are others who know all too well how it works and they take every imaginable precaution, but this disease is not always so easy to manage. You might be doing everything perfectly, but I have learned a hard lesson to is not perfect and Addison's is not a disease that can necessarily be "tamed" by a regiment. There are variables in life and these can sometimes wake the Addison's monster.

Do all you can to avoid a crisis, but try to communicate an oncoming problem with those in your family. On that cold morning this past weekend, my brain was already wavy and the synapses were firing slow and muffled, so I could not communicate to my husband what I did not clearly understand myself. However, whenever possible, just say, "I am having trouble," or something to simply alert those around you that there is a potential issue arising. If you are like me, you hate to call attention to yourself and you prefer to handle these things on your own to spare those around you from being a nursemaid, but sometimes you must be able to wave the red flag.

I'd like to say that I could've done something better or different this past Sunday morning as my husband stood in shock and realized that my body was stumbling and going into jerky motions because of Addison's. Not letting my body become so taxed by the cold would have been a great start, but there I was. Life happens. I was very fast in taking my meds, my second dose that morning, so I was making adjustments, but it was still scary for him to witness after he'd been sitting next to me so peacefully, only to discover his nightmare had been in silent action.

At least I wasn't to the "napping" stage while we were in the middle of wilderness. But, if that does happen in your situation too, I guess family members could walk over to their Addisonian loved one and pull open an eyelid while asking, "Are you asleep or are you in trouble?" If there isn't a response or if there is a garbled answer, well then, the answer is clear and action can be taken. Of course, this might get irritating over the years, but it just might save a life or two.

Beautiful bulb flowers we found growing wild on our land. What are they?

Friday, April 15, 2011

#61 - Adapting to Addison's

I had once written that I wished there had been a handbook for those of us who have been diagnosed with Addison's and for our families too. Well, I meant an emotional handbook that included frank information about this disease, to help prepare and to discuss how our lives are truly impacted when a person in the family is diagnosed with Addison's.

If I would have had this handbook when I was diagnosed with Addison's approximately ten years ago, I think I would have kept it next to my bed and referred to it over the next couple of years. Knowing that each person is diagnosed under different circumstances, there are still similar feelings and emotional hurdles that need to be faced.

I am not a doctor, but my personal, direct experience with Addison's has been an incredible learning experience. I recognize that each person is different, so you have to find what is right for your family when facing Addison's. Hopefully, you do have a good doctor who can think out of the box and understand that Addison's has so many variables and the textbook answers are clearly not sufficient, as of yet. I know people who are working on that angle, but it will be a long journey. In the meantime, by sharing our personal experiences, we might actually find ourselves ahead of the curve. That is my hope for all of us. So, below are just a few of the many things I wished that me and my family would have been counseled about wholeheartedly when I was diagnosed...

#1 Disbelief: Sometimes you can feel as if they got the diagnosis wrong. Addison's?? You've never heard of this disease. It is so rare that it is difficult to believe that you have it. Family members may react by choosing to believe that you do not have this disease, they cannot remember the name of the disease, so it must not exist. There may be days when you feel completely normal (on treatment) and you might want to "test" whether or not you really have this disease, but don't do it. It is an emotional-roller coaster to the day you accept this diagnosis. Meanwhile, do everything you can to help yourself feel as healthy as possible.

#2 Prescription Mystery: Many doctors will do a poor job of explaining the need for an Addisonian to increase meds, as needed, to include emotionally-stressed situations due to outdated reference material. Also, it is important that a patient find a time-schedule for dosing that works best for them. This is not the regular disease or condition where you get a set amount of medicine or a disease with high-tech gadgets that can definitively reveal your "levels." It takes tremendous dedication to be in synch with your body to recognize subtle or hammer-head signs that indicate a need for increased dosages. Just imagine diabetics who are very precarious in health and them having to live without a glucose monitor because it doesn't exist. Well, that is what the Addisonian is confronted with. An Adrenal Crisis with rapid life-threatening changes is our lifestyle and it does not include any solid monitoring devices, other than your own senses, to determine a fast course of action to self-medicate as needed. You'll have to find what times the meds will most bolster your energy level, what times you need a pick-me-up and what times you need to taper so your body can actually get a healthy amount of sleep. You have to find out what works for you. That takes a lot of time, frustration and dedication to get it right.

#3 Sharing your Diagnosis: What to say? Another huge issue after diagnosis is learning how to explain your condition to others. Sometimes, you need to satisfy a friend's surface curiosity, sometimes your health depends on a solid explanation with technical jargon, but it can be tricky because the person listening may not be capable of absorbing the information. Usually, for those who are curious, you can start with saying, "I have a rare disease that you've probably not heard of, a necessary part of my body has quit working and I must take medication several times per day with an emergency injection always ready, because it can be life-threatening. My medicine helps me to live a normal life, but this is not a condition that will go away, I will have it to treat it for a life-time." Then, if the person is receptive and intelligent enough to want more, you can explain cortisol production, etc., but I would not use the technical words at first because most people simply shut down or have a limited mental picture. I don't find a need to give a Biology lesson to those who are interested, unless they are wanting it to be explained in such depth, otherwise, you'll quickly be looking into glazed-over eyes. You also need to be patient, you'll have to repeatedly explain it to most people in your close circle.

#4 Lifestyle Changes: Depending on how sick you have been, this can vary tremendously. Those who do not fall into dire circumstances with Addison's before diagnosis seem to have a better time adjusting. That would seem logical. Of course, if your body has gone into a state of critical health and if you have been sick for so long that your body has been in this weakened state for an extended period of time, there can be long-term side-effects...physically, mentally and emotionally. It depends on how far down your body has gone and how taxed your organs and system had been. Sadly, there are people who do not make it from an Addisonian Crisis, others are left with permanent damage, then there are people who get a diagnosis after feeling unwell, but their life had not yet been drastically altered by the disease and might not ever be altered. So, the people who get a good start with their diagnosis are more likely to be at the launch pad ready for take-off when they get started on treatment. Addison's encompasses such a broad spectrum that is difficult to understand. Not one Addisonian is the same in how the disease impacts their body, yet we are all similar. If you have other medical conditions that tax the body, then your Addison's disease will likely endure more management struggles. It's a big picture to look at when you get a diagnosis, unfortunately, many doctors are only capable of viewing a tiny corner of the overall picture and they miss out on too much.

#5 Family Stresses: The introduction into the world of Addison's disease can indeed cause many stresses upon the family. Everyone seems to be living in a state of heightened alert, especially if your household had been severely disrupted by Addison's. The more severely it is disrupted, the more traumatic it can be for the family members. Having a child with Addison's presents more challenges for the family as a child is often eager to ignore symptoms so that they don't have to stop whatever they are doing to address something so irritating. It make take some straight-forward discussions and family meetings to make sure everyone recognizes the signs of an Addison's crisis and to make sure the child learns to pay attention to the warning signs. The family may be stressed by the potential problem, but making sure everyone knows how to administer an emergency injection - having instructions always posted in an easy to find location with the syringe and vial also taped near the instructions is vital, choose a location that is not too tucked away, maybe inside one of the kitchen cabinets or medicine cabinet. When a person is confronted with having to handle their loved one's crisis, the instructions should be numbered or bulleted so it is easy to follow during possible panic and brain overload that can blow every perfectly rehearsed moment into chaotic bits, provide very concise instructions in clear stages. This can empower a family and be of real assistance during a crisis.

#6 Little Warning Signs: We always read of the symptoms an Addisonian gets BEFORE diagnosis or hear about what happens during a full-blown Adrenal Crisis, but we rarely read about what the little, subtle warning signs might be after diagnosis when cortisol levels or other areas go into fuzzy zones. There can be brain "fog" to where you cannot think clearly. You might have trouble walking and begin to stumble or find it more difficult to pick up your legs. You might have muscle cramps or abdominal pain with or without back pain. Of course, nausea might be present. Constipation might be serious because the gut is not in action like it should be or you get huge waves of dizziness out of the blue. Your eyesight might be going really blurry. If you feel lethargic and unable to move your body with ease, then you might need to think about a stress dose. Whatever your symptoms might be that could indicate a need to increase your dose, pay attention and you'll soon learn that your body probably has some sort of pattern for regular day dips in cortisol. Now, emergency situations are different, because they all vary, but day to day, listen to your body and be in tune to changes. Those subtle warning signs are a huge part of Addison's disease, so know its importance.

There are more, but these are the highlights I wished to have had someone literally walk us through so that we could have been in less shock.

My little sister is a counselor and I believe that a patient getting an Addison's diagnosis should definitely have a counselor who is specifically trained in Addison's to help the family adjust, especially for those families who have endued great trauma to get to the diagnosis. Maybe one day we'll get to that point in our healthcare. This disease is so rare and so unique in the way it is manifested that we are often left to being "tested" by life and this is when we learn how to self-regulate our condition the best we can. As most of us know, even under the best of circumstances, things can go wrong, so it is great to have a plan. Talk to your family. Make this a business meeting that is necessary for the household to be run more efficiently. The alternative is not a good plan.

Wednesday, April 13, 2011

#60 - Sticks and Bricks SOLD

Any illness can create changes in a family, whether minimally or completely invasive, it can make itself known. Addison's or any other illness may have changed your own family, it hugely changed mine. Back in 2001, I was so ill and had been deteriorating for so long, without a diagnosis, that my condition affected many things in my family. I had been running a successful litigation support business for nearly a decade when Addison's hit my body. One thing is for sure, if you cannot lift your head off of a pillow to eat dinner, then you surely cannot run a company.

I had savings and residual income that helped for about six months after I was no longer able to work, but my bad health brought expensive medical costs with it. The doctor visits, medications, tests, hospital stays...all of it added up significantly. For months, I was going to different doctors and having tests run almost daily.

I had gone to untold doctor visits and had been admitted to the emergency room countless times and each time we found more money leaving the bank account that I was no long able to replenish, and I still did not have a diagnosis. My husband was forced to take all his vacation, comp time and sick time just to help me through the extended horrible time when my body was dying - from a rare disease that was repeatedly missed by too many doctors and too many teams of doctors.

Thankfully, my mother entered the picture in a big way. Talk about a life being changed by illness...after my husband's time off ran dry, my mother set aside everything in her life to take over taking me to doctor after doctor. She helped with my daughters and unselfishly gave her time, her energy and her voice to speak for me when I was simply too weak to even talk. She became my champion, in spite of her own challenges. For, you see, my mother had been "crippled" at five years of age by Polio. Her right leg was fully braced, it had also been surgically altered by rods and pins, her foot was completely fused and unmovable. The brace attached to her specially designed shoe and ran up her leg to her upper thigh. This leg would not support her without the brace. Her left arm was small and paralyzed, the hand had fingers that would not work. She could hook her car key ring onto her thumb, but the hand was incapable of griping, moving or bearing weight. The arm was not even in socket. It hung out of socket permanently and quit growing at a young age with muscle atrophy further reducing its size. My mother spent a year of her childhood in an Iron Lung. If you don't know what it is, be glad. But, my mother defied all the odds and survived contracting the Polio virus at a young age, but it left her body ravaged and forever changed. Still, my mother pulled her strength together so that she could help her daughter --- my mother flat out told me that she could see that my body was dying and we were going to go through "hell and high water" to prevent the end from coming so soon. My mom was beautiful.

Without an answer to my body's inability to do normal things any longer, things were spinning out of our control. The long months of illness took a  massive toll on our family. My daughters were young and needed their mother who could barely get out of bed. I needed to be the kind of mother who didn't hit the sheets until my mothering moments had been fulfilled for the day, in perfectionist style. Yes, I had been an over-achieving perfectionist and this would be something else I would find changed after becoming ill. It's as if God took me in his grip and forced me to just stop. Addison's brought everything to a complete halt.

I had been the kind of mother who did everything, I mean everything. I packed their lunches, drove them to school, picked them up from school, and I took them to their dance lessons, gymnastics, basketball practice, drill team name it, I was driving. Plus, I ran a hopping business and managed to keep the house virtually perfect with a once per week maid service to ease my disinfecting compulsion. Life was always chaotic, yet "normal" and with a scheduled flow. We all thoroughly looked forward to our Sunday in church as a family and we served as Sponsor Parents for the nearby "orphanage" of children who were Wards of the State of Texas. I cannot even count how many children shared our home with us. Just as a divorced parent's schedule might be, with Wednesdays, every other weekend, holidays and summers, we shared our home with a child in need. The kids at the Harbor would ache to come to our house and I wanted to be able to take them ALL home, but we did our best. We did our part to make a tiny dent in the life of children who should never have to face such challenges. Life was meaningful, fulfilling and awesome. Then, my body got sick and all of this went down the drain.

My incredible husband and his two beautiful gals in Kemah, Texas on the Boardwalk around the time I had been diagnosed with Addison's and began treatment. I believe this was our first "real" outing since I had been very ill. My meds gave me a miracle.
 My husband was great, but there was no way he could've done all I did for one practical business had always allowed me to have flexible hours. Don't get me wrong, I worked at least 50 hours per week and that was FOCUSED, rapid-fire-level work. My business practices and dedication defined the word "productive." However, my schedule included the almighty power of flexibility. I could do part of my business on the cell phone while waving at my daughter as she attempted a back-flip. I could wake up at 4:00am and have major, immediate tasks completed for my law firms before they opened their doors for the day. But, my husband, as a Deputy Sheriff, had little flexibility in his regimented, structured schedule.

When I became ill, the stress upon our family was tremendous, my husband became exhausted and emotionally drained from trying to take care of his young wife who was clearly very ill. Too often, he would go to work worried, drained and no end was in sight. The only end we could see approaching rapidly was my death.

My husband's exhaustion was very concerning because our daughters needed him more than ever and we had another area of concern. Most of us could go to work tired, not feeling well and we'd manage to make it through the day, but he carried a deadly weapon and worked with the most heinous criminals known to man while being in charge of the safety of innocent people around him. We knew that it was imperative that he wake up and be rested enough to be alert, ready to act and without impaired judgment from the exhaustion and stress of our situation. This was a tall order. Therefore, I did my best to do everything possible to not interfere with his sleep. I've not always been successful, but this has definitely been a priority.

About six months after I became ill, the emergency savings had disappeared, the medicine bills were mounting and without the two-income family status, we were simply unable to continue living as we had been living. Fortunately, we never really used credit cards, so we did not have that kind of debt, but we needed to make extremely difficult adjustments. We needed to sell our house before it was an involuntary move. My parents asked us to move in with them so my mother could also be more involved with my daughters while I was so sick. I initially mourned this decision because of how it would impact my children. I was already losing everything I'd worked so hard to gain, but I did it all for my children and now they were going to be suffering because of my illness.

The guilt I endured was torturous. I felt worthless. I was the direct source of my family's sacrifice and loss. I couldn't even do the most basic of things...How could I stop this destructive boulder from barreling us over? I was trapped in my body and in agony as I watched my life, my husband's life and my children's life disintegrate.

They loved me, but it didn't make me feel any better as I watched my daughters pack up their belongings. I knew they were terrified by my illness and to top it off, all stability and childhood comfort was being yanked from under them. I felt burdened as my children said goodbye to their neighborhood friends; I even let them have a party. I tried to make it a celebration. We would not leave our house holding onto the devastation. We would leave it there, the best we knew how.

But, my brave girls left their schools, the rooms they had decorated as they had wanted, the bike paths they cherished, the little store tucked in the middle of our tight neighborhood that had management who would run a tab for the girls when they wanted to go with friends to buy candy or a soda...our safe, predictable, lovely home was now going to belong to a elderly couple who had re-discovered each other in retirement age, so they divorced their long-time spouses of approximately 40 years each so that they could act like children and marry each other. My house that had been so full of children was now going to be lived in by a couple who had been disowned by their respective children and grand-children. Everything felt "off.".

The very nice treehouse/clubhouse with
tire swing and slide that the new owners wrote
in contract to have dismantled and removed.
My youngest daughter had a room with custom book-shelving that made an arch around her bed...all of her precious belongings and favorite books lined those shelves. After we put our house on the market, we immediately had this elderly couple come for a showing and they began raving about how this was definitely their house. Of course, I was not always able to leave for the showings because of being so ill. It was a fact that any potential buyer would be forced to work around...the sick young woman would most likely be in the house. This couple was determined to buy our house. They flat out told us that they would do everything necessary to shut out all other interested parties because they must have our house. It was a huge blessing, but things had progressed so quickly.

I had imagined having time to adapt to the decision to sell. I thought it would take about three months. Nope. We had a contract nine days after the sign had gone in the yard. Then, during the buyer's second showing, they stood at my youngest daughter's bedroom threshold and began discussing how the first thing on their list was to bust down all the shelving. They discussed how no room would reflect a child because those days of their lives were over, so each room would be a reflection of themselves and only themselves. My daughter's shelving would be torn out, my heart sunk. Yes, it was a business transaction, but this was also personal. Their plans for our house was a harsh reminder of what was changing in our lives as a family.

My daughter in her favorite reading spot in the room she had to leave behind.
I will write more about this later. It is very difficult to go back and remember these times, but I want others to know that hard times may come, but your worth is in more than sticks and bricks.

My daughters will also be writing their own versions of these times. I am hoping that the heartfelt sharing of how illness can affect a family will help others to know that they are not alone in their struggles. I didn't talk about all of this when we were going through it because I didn't want people to know the reason for the move. I didn't want to admit to the neighbors five houses down that I had been so very ill, the entire ordeal was painful and embarrassing. I didn't have the energy for questions. I didn't want to be seen as "weak." This stubbornness would be another mental and emotional block that would have to be torn down, part of it still lingers today. I am definitely stubborn, but maybe that has helped me more than I know. My husband is incredible because he actually LOVES the stubborn side of me, as much as it irritates him. It also makes his heart go pitter-patter, maybe too much and for that, "I am sorry sweetheart!!"

The love of my life.
More difficulties were ahead. More changes. More sacrificing. More tension. More adaptation. But, then we all experienced a "more" we had not expected...we all became more bonded; we each gained more emotional strength than we could have imagined; my children became more compassionate and wise beyond their years; my love for my husband grew deeper and more passionate than I knew it could be; and we struggled, but our family gained much more than we lost.

We'd been kids together, faced loss and still found love. Deeper love.
I will not deny that the process was extremely painful and scary as we faced so many unknowns. Today, my family loves each other more than ever. The four of us endured heavy losses and terrifying times because  catastrophic illness hit our family out of the blue, a young family who had been capable of anything and everything. We endured and we triumphed we rebuilt our lives. We suffered together and we celebrated together. Through it all, we've learned that nothing else is as important as family.

The girls during our last Christmas in this house.

Sisters and Fellow Aggies. This is the senior year of
my oldest at A&M last year and the freshman year of
my youngest at A&M. A great ending and beginning.

My well adjusted, intelligent and beautiful spite of the
trauma in their childhood and their lives turning upside down, they
are beautiful on the inside and out. Full of sweetness and a tad bit of vinegar!

My silly girls.

David and I being our normal, silly selves.