Wednesday, July 28, 2010

ENTRY # 11 - Dependency Issues of a Bad-Ass

Short Description of Bad-Ass: a person who does not easily waver from their stance and woe to those who try to sway them.

It is July of 2010, I am now 42 years old. I have two amazing daughters who are currently 22 and 19 years of age. Weird. I have been married over 24 years - for more than half of my life. I wasn't even 18 years old for a full 30 days before I got married to my Airman. It's been a very exciting life. As a baby, I came out stubborn and determined, this is true. All of this is important so that my diagnosis of Addison's and the devastation of having to be Steroid-dependent is understood, at least for my situation.

As a small town girl living on the edge of one of the largest metropolitan cities in the nation, I had a double-dose of American pie. I was blessed enough to get both versions, small-town and big-city, up close and personal. Even with great exposure to all kinds of substances, throughout my youth, I constantly veered away from any kind of alcohol or drugs; it just wasn't my thing. I had a great time surrounded by friends who were unable to "let loose" unless they had their personal concoction, but it did not suit me. In fact, beyond that, I was terrified of becoming drunk or with doing drugs because I never wanted to lose control of my mind or my body. Maybe I am a control-freak, but that's okay. I've reconciled this part of me.

When I gave birth to my first daughter, we lived in Germany. My husband was stationed at Spangdahlem A.B. and we lived on the economy (with the Germans, not on base). At this time, Spangdahlem was very small and we had to go to Bitburg A.B. for most support services and luxuries. When I went into labor, the American hospital on base was full, so I was transported by ambulance to the German hospital (Krankenhaus) in Bitburg where midwives deliver the babies. At this time, a German doctor stepped in only for C-Sections and to administer the procedural epidural for all births.

I knew little German language at this time, so when the Dr. came into the labor and delivery room, he abruptly walked up to me to inform me that he was about to give me an epidural. I had already made it clear to everyone, repeatedly, that I was not taking any drugs for pain; I even spoke it in German. I was delivering naturally. This Dr. made his opposite feeling known; I was not his ideal patient. He kept telling me that he was preparing to give me the epidural. I repeatedly told him, "No thank you; I am going to have natural labor." The German Dr. was obviously furious. His jaw was tightly clenched and his body was rigid. He turned away from me, then he took my husband by the arm and pulled him to the corner of the room and with a thick German accent, he ordered, "You need to go tell your wife that she must take the epidural; it's super-super." That part momentarily amused me, "super-super." Ha! Yes, I realize that most women will agree, epidurals are "super-super," but not for me.

For a brief moment, I held my breath as I watched these men wrestle over my dependent state, then my husband said firmly, "My wife already said she didn't want one. She can speak for herself." Then, my husband walked back to my side. The Dr. literally stood there with his mouth open. I was so proud of David. He really did have my back. My husband had already dismissed the Dr. from our presence by turning his back on him, so the doctor stormed out of the room and the two midwives exchanged nervous glances. I was a little scared that he was going to return and attempt to tie me down and do as he wanted with his "super-super" drugs. I worried that my husband would be taken away by the Polizei. I never forgot...this wasn't America. Also, I was not on base. I watched the doorway and remained ready to make my escape, even while in labor. The German doctor thought he was so tough and forceful, but he didn't understand my 19-year old determination. Maybe it's because I have part Native-American blood running through my veins. Cherokee blood. Don't mess with me you little German man.

With a petite frame of 5'2" and just at 109 pounds before pregnancy and only a few pounds later with my full term pregnancy, I pushed out an 8 pound 4 ounce little gal that was just at 22 inches long. A couple of hours before delivery, a German midwife had conducted an ultra-sound and after taking measurements of the unborn baby's head on the screen, she said in part German, part English, "Oh my, the child is large." I understood her words and saw her concern.

The midwives had been sweating bullets in an effort to make me deliver the baby faster. They had even started a pitocin drip that increased my agony tenfold. My water had broken before ever going into the hospital and they had a strict delivery time table for women whose water broke early on. I know it was to prevent other complications. But, I was the one "delivering" and everyone else was "assisting." Still, these German women seemed to become desperate as they wrapped towels around the metal bars on the sides of my bed to cling to as they climbed on top of me to "help push the baby out." It was brutal. We have a video of this ordeal as the camera sat on a window ledge secretly taping. I still can't watch it. I never imagined my first baby would be delivered with large German women on top of me.

Thankfully, my husband decided enough was enough; he yanked the towels out from around the bars and threw them aside while saying, "She can't breathe with you on top of her; no more of that!" I believe it scared the midwives straight. They could see that David meant business. They didn't try this technique any more after my protective husband's forceful stance. Yes, the rest of it was painful. Beyond description. However, I did not take any pain medications. It took eight hours. I was so scared of medications and so determined that my child would come into the world drug-free that I refused to ease my own desperate suffering. It was worthwhile. Little did I know that this little baby would one day end up to be a gorgeous 22-year old graduate of Texas A&M with her degree in Biology and a contestant on "America's Next Top Model" Season Eight...the two-hour opener. She's the "Boot Camp" girl. So much like the love of my life, her father.

Near three years after my first delivery, we were back in America and at St. Luke's Episcopal Hospital in Houston, Texas as I was getting ready to deliver our second child. Being my typical "difficult patient" self, I refused all pain medications and even refused to give permission for an IV to be administered. Again, the staff was not pleased. However, I had to re-think my hard-lined position as things quickly went sour. The baby, with an internal/head-attached monitor, went into dire distress. Those monitors and their horse galloping sounds that are the baby's heartbeat were loud and clear. Her "gallop" was slowing and coming to a complete halt. At this point, I was ready to sacrifice my own body to whatever intervention that was needed to save her life. I would have given my life to save hers. I didn't even know the baby was a "she" at this point. We hadn't wanted to know until the baby was in our presence. In my sudden submission, after terrifying moments of hearing the baby's heartbeat slow to a near stop...the experienced nurse used skilled fingers to knock the tip of the baby's head and the heartbeat slowly and audibly picked up again. At this moment, I barely noticed my own pain.

Turned out, the baby was entangled in her own life-giving cord in such a way that it had created an actual noose around her tiny neck. Each contraction pulled the noose tighter. The situation was not a good one. So, I complied. I finally laid back and went into zombie-mode so I could be prepped for an emergency C-section, just in case. It was a necessary precaution. They put the IV put into place. But, an amazing thing happened, my unborn baby, in her own determination, had a sudden, rapid descent without the Dr. in the room. On the video with the side-view ONLY it can be legs aren't even in stir-ups yet, the lights are being knocked about wildly by the medical staff, the doctor has rushed in and doesn't even have her protective gown tied into place - her arms are barely in the sleeves and it is falling off of her; she herself is yelling while reaching to catch the baby. My baby could not be held back. The doctor yelled, "Don't push! Don't push!!" Well, sorry for the inconvenience...I didn't even need to push. Nature has a way of taking control. My beautiful baby made her way into the world incredibly fast. So tiny, yet fierce in her determination to survive. It was so fast that I had gone from the nurse checking me to show I was dilated to eight and before the nurse could discard her gloves at the doorway on her hurried way out of the room to give the report, I felt the baby coming. Within FOUR minutes of that moment, Stefanie was born. Thankfully, I ended up delivering my baby before any drugs or further intervention could be given. Another natural birth delivery without any drugs.

Initially, the baby was in bad shape and wasn't making a sound. The doctor was frantically untangling her from the cord and trying to joke, "Oh look, she's trying to wear the umbilical cord like a wrap." But, the doctor's expression didn't match her words. On top of that, I was not in good condition myself; I literally tore apart in three directions. I was on FIRE. The traitors used my IV to push in drugs AFTER my delivery to spare me the sight of my daughter's life struggle. Suddenly, as my mother stood by my side and my husband hovered over the newborn, I was pleading for someone to tell me if the baby was okay. I looked into my mom's eyes and could see her distress. She leaned into my face and in an effort to not lie, she told me, "Baby, you will be okay." That wasn't the answer to my question! Suddenly, I found that I couldn't breathe and a weird sensation came over me. I'd never felt anything like this before. What is wrong? I started to mumble while trying to tell everyone that I couldn't breathe. Then, someone broke it to me. "We had to give you something; there is a lot of work to be done." It was my absolute worst fear. I'd been drugged, without consent. In hindsight, I realize that the frantic medical staff could not deal with a strong-minded, injured mother along with a tiny baby fighting to live. It was Demerol. This wasn't fair!!! I made it through the ENTIRE delivery only to have them shoot me up to shut me up AFTERWARD. Well, to be honest, they knew I was badly shredded and they had to sew me back together in several directions. Surely, I didn't have the mysterious disease of Addison's yet or I probably would not have survived this trauma. The physical and emotional stress was tremendous. The baby rated 2 on her first AP-GAR score and 4 on the second one, ten minutes later. The nurses dubbed her the "miracle baby." She grew strong; she made it, and she is a healthy gal today who just finished her first year as a Marine Biology major at the Texas A&M-Galveston campus. I am proud to say, she is a lot like her mother.

So, ten years later, when I developed Addison's Disease, I was horrified at the thought of having to take medications every day. Especially steroids! Like most people who are told they must take a daily medication dose in order to continue living...yes...I was initially devastated. It also meant that there was something really wrong with my body. It was simply an extension of an overall greater issue. On one hand, I knew those pills were miracle pills because I had nearly died after being in a long-term state of Addisonian Crisis. I had already had a Code Blue called on me while on the cardio-floor, so I understood very clearly the value of those pills to my life. Still, the reality of being dependent...DEPENDENT...on medication every day was an overwhelming reality. I was angry. I was getting the "talk" from multiple doctors about how there were not any other choices for Addison's Disease...I conducted an unbelievable amount of time researching for alternatives. Don't take too little; don't take too much; the side-effects will be horrible, but focus on the pills keeping you alive for today. Steroids were the only choice, if I wanted to continue living. I learned the hard way, those pills would keep me horizontal.

After my initial diagnosis, I remained deep in denial, I could not help but wonder if the disease had mysteriously disappeared. It was my hope. Perhaps I could stop taking the pills, and I'd magically find myself healed, never to need another dose. Unfortunately, this would not be an option. Such a diagnosis brings many layers of changes. This new way of life, with medicine constantly in my system, this would be a new way of life I would have to accept. The road to that acceptance was not without major bumps. Steroids...a new understanding of this "media-hyped" drug mostly relating to athletes would have to become settled within my mind. It pertained to me in a uniquely different way. For my body, it was not for a "recreational" need; it was simply a supplement to aid survival. I needed daily steroids to live, not to be "physically-superior." For those of us with Addison's, it just doesn't work that way. We are steroid-dependent. I've said it before, it's as if we Addisonians are underwater and our steroids are our oxygen tanks. We don't take them, we don't survive. Period. Bottom line. I decided to keep breathing. I expertly pop those "oxygen tablets" and I am happy to live another day.

Oh, and in that German hospital, the day after my delivery, an American military doctor and his assistant visited me. These military men told me how amazed they were that I held up against the German doctor because they had never known an American woman to deliver naturally in a German hospital. There weren't too many women delivering naturally on base either for that matter. Not in this era. He told me that the Germans were about 50 years behind us in this regard; they still wanted control over the women who were delivering. High-tech German advancements weren't too impressive in this situation. The American doctor wasn't telling me something I hadn't already learned by personal experience. I wasn't too surprised. My baby Heather was tightly swaddled in a little plastic-edged bassinet next to my bed (I had to fight for that too and fight against the Kinder-Tea bottles). The American doctor gazed down at her with a huge grin and he left all decorum behind when he looked at me with a victorious expression and pumped his fist into the air while saying, "Bad-ass Americans!" He was loud in his proclamation. Then, we three laughed as the baby contentedly gazed upward at the doctor and he unwrapped her swaddling to start his proud inspection. It was some kind of a triumph for him and a moment for me to always remember. Glad I could oblige. Yes, I am certainly difficult and perhaps, deep down, sometimes I am also a "Bad-Ass."

Tuesday, July 27, 2010

ENTRY # 10 - Addison's Who??

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

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

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

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

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

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

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

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

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

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

Monday, July 26, 2010

ENTRY # 9 - Hard Week

Short Description of Friendship: A friend is someone you can call out to and they hear you loud and clear -without you having to use your voice at all.

Last week was abnormally stressful to the body and soul. No one is tip-toeing around the ugly part of a beautiful life coming to an end this past week. This particular Saturday morning, a friend's husband had been suffering too much to confront another day. A beautiful life came to an abrupt end that morning. But, his two sons and his widow are forced to keep going; they do so with incredible dignity and strength. In spite of their loss, those boys will be stronger than ever. They will struggle, but they will triumph. Sometimes, intimately experiencing the dark side of life can be the strongest deterrent of all. Those left-behind "victims" can end up to be the most diligent champions for the sanctity of life.

During this week, I also took a good look at my family and saw their strength, their devotion and their remarkable endurance. It is healing and deeply moving. A time such as this can bring out the worst in so many people; it can bring out tremendous anger, frustration and judgment, but our family demonstrated all of the opposite. Everyone came together like a band of warriors that used love, kindness and dedication as their weapons against tragic loss.

Long ago I discovered that friendship is truly an investment. The investment is yourself. Some people never make even the tiniest of investments, they live afraid of emotion, Then, there are others who give all they have to give; their emotional well never runs dry. When a friend finds great happiness, you smile both on the inside and on the outside for them and with them. It doesn't matter what is going on in your own life, you are able to celebrate your friend's joy. But, when that same friend is suffering, you stand alongside them and help carry their whatever way you can. Maybe you have done your part to help carry a loved one through a storm; perhaps you have gone through tough times and have been the one swept up and carried during your time of need.  A life well-lived is one who has experienced plenty of the two...of carrying others in times of strength and of being carried in times of weakness. Each side gives great wisdom. Fair-weathered friends are a joy, but the other kind...the kind that remain steadfast and rally as the grey sky approaches...those are true friends. Finally, when dark winds start blowing...true friends do not shy from the storm. They keep moving in a united direction, undaunted by their bitter task.

Friday, July 16, 2010

ENTRY # 8 - Letters

Looking back at one particular journal from 2001, the year I was diagnosed with Addison's, I remember scary, unexplainable things happening with my body.  The journal excepts (shown below) were written just a few months before I was diagnosed. When I decided to write these letters to my daughters, I was starting to see that something was not right. Something in the back of my mind and deep in my heart needed to make sure my daughters got a direct message from me...just in case. But, I had no idea just how terribly sick I would soon become. My intuition on this day to write these letters was correct; just a few months later, I was dying. No one knew what was wrong; they couldn't make me better. Down, down, down I went deeper into a mysterious sickness. Going from being strong and vibrant to physically useless; I had changed drastically and rapidly for the worse. As I wrote these letters, a few health blips had shown on my radar, but nothing solid had proven anything drastic was headed my direction. But, in the weeks and months to follow, I would clearly see ominous signs with my health.

I dedicated one page for my youngest daughter, make some kind of impossible effort that would let her know how much she meant to me. Then, the next page over, I wrote a letter to my oldest daughter, Heather, wanting her to know how much she had changed my world, for the better. I remember closing my eyes before writing each letter, and I thought about my girls and each of their unique qualities. From there, I followed my heart.

About seven months later, I was in and out of hospitals and extremely sick. I had gotten to the point, gradually, to where I couldn't walk, stand, or even sit. I remember one hospital stay, yet again on the cardio-floor with all the sticky snaps attached to my body with wires everywhere, oxygen lines, blood pressure cuffs on each leg because readings weren't possible on my arms, an osat reading finger clip taped on firmly, and a couple of IV lines about to blow, again. Months after writing these letters, I was dying. The best medical professionals in the world in Houston's prestigious Medical Center remained clueless. So, I write in my blog and remember the day I had written these letters to my daughters...I can't believe the journey that was in store for me. My situation would escalate to this horrendous level within months; I'm thankful that there were no crystal balls. 

Fortunately, I had a miracle doctor come along who finally diagnosed me, at the last possible moment. I was given a chance to LIVE another day. I'd still be able to be the one thing I loved most...a mommy. Being able to walk again without assistance was pretty darn nice too. My journals got tossed here and there. Time passed and my young daughters did not have to be given these letters as a substitute for their mother's real voice. Instead, I remained their mommy...through the good and the bad; I would be the woman to raise them into being strong women themselves.

Even so, as I am going through my journals, it's easy to say that I feel the same protective ways about my "babies" now as I did back then. As of today's date, July of 2010, they are 19 years old and 22 years old, I selfishly want to be around for as many life's moments as I can. God has blessed me tremendously. I am grateful.

Thank you Lord for conversations, hugs, kisses and ongoing moments of sharing life's experiences.

Wednesday, July 14, 2010

ENTRY # 7 - Stress-Bullets

Short Description of a Bullet: an awful projectile that you should avoid at all costs.

A warped sense of humor is one of my survival techniques. Sometimes, it helps me dodge the stress-bullet.

When a person learns that they have Addison's Disease, there is a awkward time-frame when a newly diagnosed household goes a bit out of whack. Everyone in the house now knows a little about this weird disease that no one else has even heard of, so there's no readily available outside assistance to help them understand their new circumstances. Most importantly, everyone living with the Addison's patient has clearly been told that STRESS might kill their loved one!! Augh! Stress!!! How do we suddenly become a family who can avoid a messy life filled with stress?

After my diagnosis, for a long while, I could find no one in the medical field who could truly explain the details of Addison's Disease. I had this label slapped on me with a clear warning, it simply stated; Avoid Stress - it's your arsenic. What? I have ALWAYS lived with stress! A lot of stress! Is this why I had nearly died before they discovered I had Addison's Disease and gave me some little nasty tasting pills that helped me sit upright once again? No one wanted to answer questions. The doctors were not comfortable with talking about it. Later, I discovered that they could not have been in a worse position to give me advice on this rare turns out that I was the first Addison's patient they had ever diagnosed or treated. In this case, ignorance is not bliss.

One of the doctors told me that I could handle stress emotionally, like usual, but I might suddenly find my body slipping into shock. Is this a bad joke? This was extremely upsetting, but I better not get too upset or I might be pushing up daisies. They explained that the "stress" mostly applied to any physical injuries or sicknesses my body might have trouble fighting because it lacked adrenaline, but that emotional stress was a danger as well, and it could not be ignored. Great. This meant that my immediate family initially saw me as this ticking time bomb. "Here comes mom...Hurry, everybody SMILE!"

After getting this very odd diagnosis, for a while, we didn't know how to live "normally." We improvised with joking around. Well, to be honest, I was the only one joking around about it and my husband would get very angry. He didn't seem to think that any of this was very funny. I guess I had let myself forget about being so sick that I had officially coded. I needed to forget, at least for a while. Maybe I needed to take a little side trip to "Denial-Land," but he didn't want to pack his bags and accompany me.

I remember hearing my husband admonish our daughters, "Don't leave those dirty dishes in the sink! We don't want your mother to get too stressed out! Clean up after yourself!." I'd overhear these moments and would be slightly irritated. He was busting his rear, but I didn't want to be "used" as the chore weapon. So, I would take my daughters aside and tell them that their dad needed more tender-loving-care than I did at this point. He was a nervous wreck. This man, who had previously thrived on adding to my stress had been put in an Addison's cage! What a gift! I would crack up to myself...all women should be so lucky. Soon, the girls would hear the rant about the dishes and catch on, "Dad, it's your night to do the dishes, so get to it or the stress of seeing a dirty kitchen might make mom blow to bits." He began to see the light. It just took him a bit longer than us three girls.

Yes, at times, my family has learned to laugh in the face of this disease, but we are under no illusions. I've seen the heartbreaking stories of others who have this disease and who are left with devastation from the effects; for them, there is no humor to be found. I have faced death on multiple occasions, but I must have moments of laughter. Let's face it, for many families with Addison's Disease, especially the ones who discovered their disease by traumatic circumstances, well, they are ALL left badly shaken and are trying to cope in their own way.

I worried about my kids - I wanted them to live as normal as possible. So, I began to joke with them about my condition. I'd say, "Well, you better think about going out with that boy because I am a potentially exploding mom and my detonator is STRESS. Please don't detonate me!" And we'd fall into a fit of hysterical laughing with awful exploding sounds and my own theatrical version of blowing up.
Then, there's the other most inappropriate joke, "Don't shoot the stress-bullet."

When I was first diagnosed, I could not stand the tippy toes dancing around in our house. No one knew how to interact anymore, let alone speak their firmly held mindset. It began to be infuriating. Avoiding stress was actually creating a mountain of pent-up stress. Everyone not being themselves created more stress than anything. Everyone was confused; none of us knew how to handle this diagnosis. Therefore, I believe this is another area of help that people newly diagnosed with Addison's should be with daily life adjustments and a better understanding of what happens to an Addisonian's body during times of tremendous stress. There should be talking points on all kinds of stress and what each kind could mean to the person with malfunctioning adrenals. Mostly, it's physiological stress that can cause a life-threatening Addisonian Crisis, but there ARE emotional stresses that are taxing to the body and that means it affects the person with Addison's in a negative way.

Anyone who has gone through an intense emotional moment does clearly understand that they are under more stress - they feel it. Emotional stress is not easy to hide. We've all seen the person at work who comes in super stressed-out; later that day, at the water-cooler, everyone is whispering about how clearly they can see that there is p-r-o-b-l-e-m. That is stress. My point is...stress IS a part of daily life. Within a family, it is unavoidable.

Eventually, thank God, my family saw that they could still be a complete butt-head and I would survive. Now, I won't tell a fib, there have been ugly moments that probably could have been avoided and these have caused me enough stress and negative impact to force me to double my medications and knock my body off-whack severe enough for me to have a very difficult time functioning. If your pride is injured, it is double-injured after your body starts to fail you. Talk about frustration!!! Once I feel the heart-rate start to rise and it won't come down with rest or when I feel my blood-pressure dipping so low that my wavy-head returns, I am required to increase my daily dose of hydrocortisone. Truthfully, the necessity makes me irritated with my body, but I do the right thing so I can enjoy optimal health. I never-ever-never liked to take any medications, but the alternative is not very likable either.

My kids have been such incredible people. They have added delightful fun and challenges to my life. Every day has sweetness because of my daughters. Both are young, intelligent and incredible women. We've had amazing moments together. My husband of 24 years has done his personal best to be supportive in ways he can offer, yet he has managed to nicely maintain his own life and independence through the years. It is truly a blessing to have a spouse who is loving, compassionate and dedicated to the marriage so that you can both enjoy your short time on earth together and have as little stress as possible.

Now, for a more difficult issue to tackle for a person suffering with Addison's Disease. If you have this medical condition, then you need to create a lifestyle that is as stress free and as healthy as is possible. This does NOT mean that you must take it easy or not have fun. To the contrary, you need to enjoy life more than ever before. Tomorrow IS today!! Before Addison's joined my life, I had been a Type-A personality; it took lying flat on my backside for months and confronting death, repeatedly, before I would accept my new circumstances. Changes were needed. Today, I still can meet a demanding schedule and take high pressured situations, but not on a relentless basis, as I previously did. A diagnosis like this requires some serious rethinking and reorganization.

A person with Addison's disease already has too many real soap opera battles to endure - those are not by choice, it's part of having a serious, rare condition. I do not like extra drama in my life. But, life is one BIG DRAMA after another. Period. However, if you have someone in your life who is causing constant turmoil and unusual stress by their selfish actions, then whether you have Addison's or not, perhaps you should consider the ramifications of their negative presence in your life.

Take care of yourself and you'll be able to live a fuller life and be able to share meaningful love with people who truly love and care about you, with consistent and authentic actions and words. Are you living with a disturbing amount of stress and heartache? If so, step out of the circle and start examining your own contributions to living with non-essential stresses. Is someone a stress-bullet to you? That person might be a son, a husband, a wife or a best-friend...if the relationship is dysfunctional and full of destructive actions that directly impact your health, quit accepting excuses for their destructive behavior and start protecting yourself. If they care enough, they will do what is necessary so you both can share a healthy relationship. You can't change people, but you can change your own situation and you do have complete control over your emotional connections. If the connection to this person is detrimental to your health, then loosen or cut the connection. Now, what about your connection to yourself? Are your own actions good or bad to your health? How can you improve?

A diagnosis of adrenal issues can be complicated, but don't let the label define you. As for me, I don't want to live THROUGH life's calendar events...I want to LIVE and EXPERIENCE life's events. That is why you should make each day count. LIVE - don't just exist. Years do not count for much. Have you ever heard about graveyard stones? Topsoil people walk around and observe each buried person's birth date and death date. But, those two dates are not enough to represent our lives - our existence is better defined by the unmarked "in between" time period - also known as "the dash." Make your unmarkable dates the most remarkable times of your life. For all of us, our starting line and our finishing line are blips - the memorable part is our movement through life. What is the significance of your movements? Are you actually moving or existing? And remember, you don't even have to be capable of being able to physically move in order to really live. Yes, working body parts is super nice, but there are plenty of people who have a healthy body, but are perpetually reclined. Others might be forcibly reclined, yet they could be the most lively souls you'd ever meet.

So, whatever your physical state...enjoy life. Find the parts you can enjoy and start savoring. Don't forget to laugh. Work at it. Read books with humor. Watch a funny movie. Listen for jokes and appreciate our innate desire to be lighthearted. Heck, sometimes I am so dang funny that I laugh at my own jokes. All by myself. Really. Quit trying to be so "appropriate" and enjoy life while dodging your own stress-bullets.

Monday, July 12, 2010

ENTRY # 6 - The Beast

Short Description of a Beast: an irrational and aggressive monster willing to tear you from inside out.

It's hard for a normal person to really understand the seriousness of Addison's. What is the danger for a person with Addison's disease? The short answer: stress.

Everyone has heard something about the "fight or flight" response of the body. It's a term used loosely and it is an incredible mechanism within our body that is taken forgranted by most people. Let's suppose that you get into an accident and an awful thing has happened...your body is injured. Without you having to do a thing, it begins. A marvelous first-line of defense begins to work miracles in your body. The adrenal glands kick into auto-pilot. Those glands start their incredible job of going into high gear which is the "fight" mode. For normal people, this means you get flooded with excessive adrenaline. It's an amazing process; adrenaline is your life-saving friend. It serves you honorably during times of physical danger. Adrenaline is like a knight in shining armor rushing to save you.

Two pea sized glands over your kidneys dump this magical hormone into your blood stream and it is as if you are sprinkled with Fairy Dust. Suddenly, you are morphed out of the normal-ever-day human mode into the almost-super-human-mode. Sometimes, those moments of being super-human are enough to allow you to live another day. Adrenaline strengthens you and buys you time. The Fairy Dust (adrenaline) courses through your body and it kicks your body into a high, unnatural gear. In a moment's rush, your body goes through major changes...the heart that might have been weakening is starting to beat harder and the blood pressure that might have been falling is suddenly increasing and pumping more furiously; your struggle to breathe is altered as your airways are opening more fully so that each breath comes deeper and easier; your blurry vision sharpens as your pupils dilate to allow your vision to be narrowed for intense focus, but your peripheral vision lessens in the exchange and this is okay because you only need sharpened focus right now; your body releases a load of glucose into your blood and this extra blood sugar gives you more super-fuel for a burst of energy that could in itself be life-saving; and also important, you will be able to endure more pain than usual and since an accident might involve an injury, this aspect of an adrenaline dump is most gracious and kind to our body. All of these combined extraordinary "powers" gives you a boost of super-strength which surpasses any ordinary moment of strength.

Since I have Addison's Disease, I find it fascinating that the military, other warriors and fighters across different forms and cultures are actively learning how to best use adrenaline rushes to their advantage. They are learning how it affects the body; how to best use its resources and how to come down safely from the rush as the effects subside and normal life returns. But, for the rest of us, we don't really think about the power contained in adrenaline. Most importantly, for an every day person minding their own business...we don't realize that if we are in an accident and hurt badly, this adrenaline dump would very likely be our internal hero. It would help to sustain you and stabilize declining vitals during a time when your normal body would be disintegrating.

The flip side of this amazing prospect of getting a burst of adrenaline is that once the adrenaline rush is over, you are pretty much wiped out. It can feel as if you've just finished running a crazy impromptu race. The brain is sort of dragged along for the ride and is so shocked by all of the sudden changes that it can't keep up and it can't record all the happenings because it is over-powered. In fact, during the entire adrenaline dump episode, it may have seemed as if time itself had stood still.

Adrenalin dumps are a magnificent part of our arsenal for times of crisis. Untold numbers of people have made it through extraordinary circumstances because of adrenaline. Amazing stories of incredible strength and endurance have come to life simply because these people found themselves reacting as adrenaline coursed through their veins. I've heard of men and women lifting cars up off of a loved one; I've heard of people surviving a crash in spite of horrific injuries; I've heard of a person being shot, yet running to the nearest emergency room before collapsing...we've all heard these amazing stories and have been perplexed by the sudden ability of these people to fight an otherwise sealed demise.

The wonderful stories of adrenaline-fed heroism is indeed a testament to the human spirit. However, for those who have Addison's Disease - the need for adrenaline during an emergency is not an option. The body no longer produces it naturally. It has to be absorbed synthetically...through medicine. The good old "fight or flight" scenario is a one-way street for a person with Addison's disease. If an emergency happens...if they get into a car accident, are trapped under a beam or faced with eminent danger, the person with Addison's has a body crash. Without properly functioning adrenal glands, a person's power source is absent. If you have Addison's Disease or Adrenal Insufficiency, then your adrenal gland factories are out of business. The body's sudden need to call upon an emergency reserve of super-human fuel is not an option. The store is closed. What does this mean exactly? Let's start with the "normal" person who has working adrenals. If they were to be in a car accident which resulted in broken bones, but they are not life-threatening injuries, they will be in agony; however, they will be OK. Conversely, a person with the same injuries with non-working adrenals with no means of immediate synthetic adrenaline will be in critical danger. Without fast intervention, survival is not so likely to take place. This has nothing to do with a person's "will" to survive. It is the same as a person being held under water - no amount of "will" can make their body suddenly be able to live without oxygen. The same goes for adrenaline. In case of bodily injury, adrenaline is similar to oxygen - it's required to continue breathing.

Every day, you must have adrenaline, also called cortisol. But, we'll talk about "regular" daily living another time. For now, it is an emergency situation that I am trying to sort through. It is complicated. In some terrible situations, adrenaline can help hold a person over until medical personnel can do their thing. An ordinary person is fortunate enough to get an additional rush of adrenaline during a critical time and it is this auto-response of the adrenals that saves a person's life. However, the Addison's diseased person goes through a different process. Instead of getting the rush of adrenaline to propel the body through a time of great stress, the body simply slows to a complete stop. The blood pressure plummets, the heart pumps faster and faster because it's trying to get blood through the vessels, but the blood pressure action - kind of like a snake swallowing its prey - is no longer cooperating. The heart furiously pumps blood out, but the vessels are not doing anything cause they are calling it quits. Your body must have blood pressure action to circulate your blood throughout the many vessel-lines in your body; without pressure, there is no movement; without movement, there is not life. Soon, the blood pressure drops so low that the brain and body can no longer function well enough to enable coordinated effort. The person eventually transforms into a ragdoll. I have been that ragdoll.

Usually, based upon my multiple experiences in this state of existence, I can tell you that this person can still hear all that is happening around them, at first. One time, as this happened to me, my vitals showed the onset of cardio-vascular shock, I laid there unable to respond. Stuck inside my earthly cocoon, I understood my dire situation, but I could no longer control my own body. Quickly, I got to the point of not being able to even open my eyes. But, it was odd because I could still hear sounds - starting as normal sounds of frenzied action encompassing me and then the sounds became more distant. Where was I going? Where was my body being taken, and where would the rest of me end up?

If there are medical staff close enough to provide a rapid response for a person with Addison's disease during this crash, called an Addisonian Crisis, they are usually unable to find a pulse because it is too fast to record. Additionally, they often can't get a blood pressure reading because it is so low that it won't register. I have so much experience with this situation that it seems "normal" to me. As for our falling blood pressure, sometimes, to the horror of the medical attendant, blood pressure is recorded as it rapidly deflates...84/62, 73/51, 64/40...How do I know all of this so well? That's easy...that was my own blood pressure readings during one episode that happened in less than five minutes as paramedics were in my master bedroom trying to get me to the hospital. I felt their panic. Here they had found me in my room and I was initially able to tell them how I was too weak to walk and needed help. They start taking my vitals bedside and I rapidly decline in front of their eyes. On this date, in 2001, I was apparently a rather healthy-looking, young 32 year old woman, but they discovered that I had begun to die on them before they could even get me out of the house and on my way to the hospital. This is also when I learned that paramedics prefer for the ambulance to not be moving as they are trying to stabilize a dying patient. Seems ironic to me...perhaps a paramedic can explain this situation to me more fully. Regardless, those paramedics were under tremendous strain. My daughters were watching their mom die, and the paramedics were doing their absolute best to prevent the worst from happening. Thanks to them and to their success...I eventually got to take another trip home from the hospital.

Anyway, on this afternoon with the paramedics by my side, I heard the vital reports being repeated to each other with urgency. My heart rate was soaring at over 200 beats per minute. By the time my blood pressure was about 60 over 40, I was unable to stay totally conscious. I was disappearing - it was like I was fading away. I could hear everything around me, but I could not move a muscle nor open my eyes. Things were going terribly wrong, but I could do nothing but lie there and depend on strangers to bring me back from the brink of death. If they didn't, I would have slipped into a deeper state of shock/coma and my lungs would have collapsed...I would have gone into complete cardio-vascular failure. The most time you can survive in this state is about ten minutes. So, if you have Addison's Disease, you better have people around you that have the ability to respond without hesitating.

Even with the best of care and my most diligent awareness of having Addison's Disease, I am still faced with these Addisonian traumas often enough to know the drill. Now, I keep my pill Hydrocortisone medication always close by, and I also have the Solu-Cortef vial and syringe ready. Unfortunately, over the past decade, I have been in this position too many times to count. Fortunately, I have experienced repeated miracles so that I am alive - today. I never take a day forgranted. It's probably impossible for most people to understand what it is like to be on the verge of death so many times...I'm beyond second chances. Sadly, I am very well aware that many Addison's patients never get beyond their first Addisonian Crisis. The reality of this is enough to bring me to my knees. Even now, as I sit here and write, I am brought to tears for the people who go through these cardio-vascular shocks, yet it is not possible for them to be revived. Their family....moms, dads, children, husbands and wives, brothers and sisters, best-friends...all are left behind wondering...What could have been different? How could this have been prevented? Why didn't we see the signs sooner? So, so, so many questions and this is when we must accept the truth...Addison's Disease is like a thief. It can and it does rob a person of life without any warning.

Having a diagnosis of this disease is not like other can be the picture of health in one second and, literally, the next second can find death approaching like a clap of loud thunder without a cloud in the sky. Sometimes, everything possible can be done and it's still too late. Once an Addison's crash starts, it is not always reversible. The body can be stubborn. Organs can start the process of failure and sometimes there is not enough medical intervention in the world to make a difference. This is why a person with Addison's Disease can walk into an Emergency Room with something that seems so slight - a broken arm, a 24-hour stomach virus or a bad cold and they can be laughing or joking with embarrassment about their own medical condition while looking pretty darn good. This patient must have "adrenaline supplements" added to their system immediately. Even a simple cold pulls on your adrenaline reserves without you realizing a thing. The adrenal glands quietly dump extra adrenaline into your blood stream, as needed, so that you can withstand the sickness that is dragging down your body. It's not a huge dump of adrenaline to the point of feeling that flush rushing through your system, no, your body is an incredible creation and this situation only requires enough release to keep you going so the cold won't totally take you down. However, the person with Addison's Disease does not have this luxury. So, standing in the E.R. and waiting for the meds to be administered might seem like no big deal. Those seconds ticking by might not seem so critical. But, if you have an adrenal insufficiency...once the body has had enough, it will start to shut down. That laughing patient might go from a sick person with a smile to a sick person who is now unconscious and coding. Not a fun scenario.

Is this scary to a person with Addison's Disease? Well, they learn to live with this possibility, but the reality of a personal emergency is ever present. My fellow brothers and sisters with Addison's Disease have often acquired amazing coping skills and survival techniques. They eventually gain very unique survival techniques that can help them get through an Addison's Crisis on their own or they at least know enough to hold them over until major medical intervention can take over their own efforts. If a person with Addison's has lived through these times of crisis, then they understand the Pink Panther element of Addison's. It is often a sneaky beast.

Is it scary for people who live with a person that has Addison's Disease? Again, that's another area of brave adaptation. Family members and loved ones develop a great resilient nature in the face of potential danger. For the immediate family members and loved ones who are within arms reach of a person with Addison's Disease, they must face truths about this condition. It's better to face the possibilities and to arm yourself with knowledge before it is required to be put into action. Be prepared for battle. Your enemy is sly and it is a ferocious beast. Therefore, keep your wits about you. Have a plan of action in order. Face facts and seek knowledge - for that is your sharp-edged sword.

Lastly, maintain your faith. If you have Addison's Disease or Adrenal Insufficiency and the beast starts to overtake your body; don't fight because that is only a faster means to your undoing. If you are ever lying there, unable to speak, do not panic. It sounds strange. I am giving you this highly personal advice only because I have survived this state on multiple occasions, and I believe my God-given technique has been my source of strength. Behind forced closed eyes, I submit. Your "fight" is different from "normal" people - they have an ally in their fight - it's called "adrenaline." You don't. I don't. So, after you have followed all other procedures to stave off a crisis, I found that I have increased my odds by not fighting. This does NOT mean that you should not get immediate medical help. You should always reach out for help at the first sign of trouble. At least let someone know you are feeling willy-wonka. But, if an Addisonian Crisis in underway and I'm without immediate help or if I am suddenly unable to get up and walk...I do my best to give my body a chance to slow down its processing so it can possibly buy time until life-saving intervention begins. It is an indescribable challenge. I won't lie.

In spite of following all Addison and Adrenal Insufficiency guidelines, this disease is a booger to outwit. I've still been the one on the gurney, hearing the distant voices of my children crying and begging the paramedics to let them ride with them so they can be with their mommy. I will not tell you that my own survival technique of embracing complete inner-calm is easy. It's not. During these times, I feel as if I am a prisoner of war, and I only have my emotions left to control. Every other internal string to my body has been cut. Deep inside, I find the will to be at peace, to breath slow - in spite of whatever my body is going through - I focus on something beautiful and graceful, such as a butterfly resting on a flower with its wings gently floating back and forth. I picture my children's faces in my most precious treasured memories. I might even start counting backwards, very slowly and rythmically from ten to one. Let the chaos around you fade away. During a crisis, you cannot participate in that side of life. You must take yourself to another place and focus, not fight.

I often draw upon my childhood Bible and the famous verse in Ecclesiastes hits home with me for this experience. Chapter 3, verse 1-8 includes, "There is a right time for everything...A time for war; A time for peace." During the silent war raging inside of me, I must choose to remain peaceful within my soul. If it gets bad enough and I have done everything possible within my control, I must find my peaceful inner world and let medical professionals take over. Don't be embarrassed to call 911. I have found that paramedics are often your best-life-saving-friends. If you can't make it to a hospital, call 911. Make sure they understand your medical condition and let them do their best.

Most people have never completely lost control of their bodies and their heart-rate and their blood-pressure - everything spirals downward. This is not a simple case of fainting or passing out. This is the body shutting down on a permanent level. Sometimes you cannot fight the must go with the flow. This is one of those times. The old adage, I'll go out "kicking and screaming" is simply not conducive to a patient with Addison's. The kicking and screaming will simply require more of your non-existent adrenaline; you'll only kick and scream your way out of your body, faster. Right now, practice relaxing techniques on a regular basis. Put on loud rock music or rap or country, whatever you most dislike, then lie back and DON'T go with the beat...form your own slower beat and float into your place of peace. Shut out the distractions. It defies everything that is a natural response, such as the desire to just jump up to rush over and shut off the damn noise, but rising above the noise is powerful. I love it when I see people who meditate and they must have solitude and peaceful surroundings so they can get into the "zone." Truthfully, I don't think that sitting next to trickling water with no interference is an admired form of meditation. That's just too dang easy. The real admiration I have is for people who can meditate in the middle of crazy chaos. Now, that's talent and control. Well, once you can find that "zone" in the midst of a raging battle, then you are a MASTER at meditation and self-control.

Let go of the fear. Let's face it, either you relax and give yourself a better chance at having a come-back or you relax and let go, with peace and beauty within. Even scary moments can be beautiful - it's just a matter or fine-tuning your perspective. Think of it this way, just as people must respond in a bear attack, to survive, they must go against all instinct and just stop. In the middle of their terror, they must play dead; they cannot move or the beast will see that slight movement and he will respond by eating the person alive. My survival technique is one can see the bear, but I feel him breathing down my neck (figuratively speaking) I embrace complete inner stillness. It's as if I already know, deep within my soul, that I must not show any emotion other than submission or the beast will pounce. Armed with this ability, I know that I have been blessed. My strong determination to submit completely during these times of outer-body panic is totally against my every day personality. I don't shy away from a good fight, but I have directly faced this insidious beast so many times already. I have discovered my own weapon for fighting the Addison's beast; for the moment, I relinquish the fight, then, I end up winning.

Sunday, July 11, 2010

ENTRY # 5 - Creative Release

Short Description of Journaling: the act of recording entries about events or life experiences into some sort of log or book.

Lately, at age 42, I’ve been gathering all of my straggler journals laying in boxes, in containers under the bed, in the corner of the closet…I’ve been painstakingly going through all of them to put my journey in order. I began this entire effort after I had decided to burn all of my journals. My husband and I were headed to our acreage and I was going to burn three at a time. Don’t ask my why. I felt as if the act of burning each of them would somehow set me free from my scary past. As I randomly selected the first three journals to do my Native American dance around as they hit me. Will burning these journals incinerate my condition? No. The journals might burn, but the condition remains. The fact is...I do not have a curable disease and the scary episodes that go with this disease are a part of my life. Burning the journals will not erase my Addison’s Disease. It’s a life-long tag. So, I began collecting each journal that had been stashed away. One by one, with a clean cloth, I took care to wipe the thick dust from the covers. Still, I did not read the words I had written, not yet. Instead, I clearly marked the outer spine of each journal for chronological reference. This had never been my intention, but I discovered a highly personal library forming before my eyes.

At this point, I had to find a place to put all of these journals. I couldn't stick them all over the place as I had done for over thirty years of writing. The collection took on a life of its own. I felt a bit overwhelmed. I still don't understand exactly why. Maybe some psych revelation into this odd struggle could be helpful. Onward...for organization, I did the unthinkable, the previously unbearable; I put them ALL together. With a three-tiered step ladder, I got to work with clearing a top shelf on my side of the closet. Then, only able to hold one or two at a time, I made many trips back up and down that step ladder, and I carefully lined each journal side by side on that high shelf in chronological order. This inaccessible location slowly morphed into a highly personal library. Today and always, it will be odd to see those journals ---- a wide spectrum of emotions wash over me as I remember so many moments of taking a pen to those pages and writing about things I couldn't talk about.

Oddly, the process of organizing these journals has gifted me with some peace. After all of these years...I could not have known that the simple act of compiling all of my journals could have been so emotionally difficult, yet cathartic. In a way, I feel like an explorer. For almost a decade, I have battled with this disease; I have shared the ups and downs with those safe blank pages. Some of the ink is blurred by my tears. Some pages held so much pain that I felt compelled to rip them out and tear them to shreds. But, I gained wisdom from each hand-scripted page. So many people are too afraid of writing; it exposes them to the deeper side of themselves and sometimes that's not so easy. A pen is the shovel of life - each sentence written with authenticity is an act of digging deeper into a person's soul. Bits and pieces clouded by the dirt of life are being brought to the surface. I guess for all artists, the process of creative release has a similar effect. A drummer can beat the skins of his drums and his drum-sticks hitting the drums are releasing his pent up emotion. A painter transfers emotion into color and form on canvas. Most of us need some form of release. Maybe you hit a few golf balls and all of life's stresses fly away with each swing. We all relate - even if each of us is unique in our outlet. Every person has internal messes to clear out of their system. Journaling is my method for coping.

My battles do not equate weakness. Conversely, they add up and I have increased strength, determination and perspective. I am a vibrant woman, filled with a deep appreciation for life---ALL of life. It's the reason we're attracted to the various "Beauty and the Beast" stories. Somehow, in some way, we all live with both elements. If I hadn't been able to see a deeper meaning to life a long time ago, I would've given up and called it quits. Intense suffering, both physically and emotionally, can force you to think of things you had never considered before. Then you learn...if you don't choose to quit, then you might have to submit. A little, perhaps a lot. But, there is a vast difference between submitting and quitting. Don't ever forget this.

ENTRY # 4 - Art to Mud

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

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

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

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

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

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

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

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

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

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

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

Saturday, July 3, 2010

ENTRY # 3 - Sweeping Pen

Simple Description of Sweeping: To brush aside or to clear away...

The past ten years has been a long road full of nasty twists and turns that are very difficult to re-visit. For years, I’ve kept so much of this intensely private. Recently, I decided to expose my experiences in an effort to reach out to others who have troubles from medical issues. More than that, I am especially speaking to my Addison companions.

Of course, I know there will be people with other conditions who will relate to my story, but I am also trying to bring awareness to this disease. Awareness with Addison’s is a huge problem. Having a rare disease usually means that it will not be discussed so easily for the simple reason is that it's not understood. I have also discovered, to my detriment, that this disease is barely recognizable on a competent level by many medical personnel during times of true need. That comment is not meant to be insulting; it is another fact that most people with Addison's Disease have confronted. If you have found a Dr. who possesses beyond a facade of Addison's knowledge, then you are blessed. However, lack of disease comprehension is definitely a repeated experience that I have faced in times of medical urgency with Addison's. A physician taking a quick re-fresher peek into a medical reference is not enough ammo for the patient ambushed by an Addisonian Crisis.

I think one of the reasons that medical personnel cannot grasp the idea that an innocent stomach bug is a killer for a person with Addison's is because these people still look rather healthy. Many times during this past decade, I have been unable to hold down pill-form medications because of a 24 or 48-hour stomach bug. This is a dire situation for an Addison's patient. If they cannot get keep their medication down, they are in serious, immediate trouble. They must go to the emergency room for intervenous treatment or shock will soon follow. And, I can tell you...going through cardio-vascular failure due to shock setting in is not the most pleasant trip I've taken.

Usually, upon entering an E.R., the first battle might be with the Dr. who is initially assigned to you. It is highly irritating for a Dr. to take the easy-chair route with your treatment until they see vitals failing. But, a patient should not be forced to endure attempts to get the Dr. to hurry with the I.V. meds so that they can live to see another day. I have had a Dr. tell me that he knew what he was doing, then he'd leave to be a doctor down the hall. His decision to suddenly get into gear after I could not respond any longer and after my blood pressure had dropped to 60 over 40 was, to me, unnecessary.

A physician without experience with this disease often cannot fathom the sly onset of an Addisonian Crisis. I have been that person who entered the emergency room after being unable to hold down my medication. It is embarrassing. and I don't want to be there. I may may be sick, but am able to talk, laugh and I have decent color and vitals. However, like a person with highly poisonous venom running through their veins...I know what is coming...shock. Vomiting in front of other people is bad enough, but in between bouts of wretching, I remain calm and try to intelligently explain my condition. Any physician experienced with Addison's understands immediately that a rather minor injury, a bout of vomiting or an uncomplicated medical procedure can easily kill a person with this disease. Those doctors will fly in action.

To protect yourself and to combat these unexpected hurdles, the patient and their family must become mini-authorities on this disease. There is not enough time to delay treatment. If the Addison's patient or loved one must speak up, they need to know their business. In the past, my husband has also been forced to issue a wake-up call to my treating staff. But, you must be able to speak up for yourself. Most often, you will be the one who has to watch out for yourself. Loved ones are not always physically present. Therefore, expect your treating medical team to adequately tackle complicated issues involved with this disease; however, if they can't, don't waste to your treating physician with straight-forward wording. Do not tip-toe around their feelings. Be kind, firm and concise. Great doctors are in our midst; use your precious time very wisely. It will be worthwhile; besides, great doctors will not be daunted by your determined knowledge. Great doctors might be great at doctoring, but they are ordinary people. Many physicians are in their field because of their own traumatic medical experiences with a loved one, either past or present. These doctors are more tough than you probably realize, and they do not relish a patient dying in their care.

If you end up in an E.R., always try to get an immediate Endocrinology consult. Immediately. If a Dr. is on a self induced ego-trip and doesn't like you informing him of your disease because he doesn't like to be told " to be a Dr...," then you probably need to rush over their fluffy-stuffed head. As a patient, you must get over any rose-colored illusions you have about physicians. Be respectful, but firm. A Dr. is there to do their job. Their business They do not stand on pedestals. The most brilliant, competent doctors are extremely connected to their patients; they instinctively know that patient-input is at the heart of everyone's well being. Brilliance knows how to listen. That doesn't mean they will have an awesome bed-side manner, but they are good at what they do because they don't get too wrapped up in themselves. Having a bit of an ego is okay, just not overly self-indulging to the point of mirror-perspective. You need a doctor who is beyond checking out his white-coat image in every mirror he passes. I chuckle out loud. If you are a medical professional, you are processing already know one of these Mirror-Chasers. Actually, you might know a few of them. Anyway, to a good doctor, patient care indeed comes first. Regardless, as personal managers of Addison’s Disease, we need professional allies. You just might be a challenge to any medical staff. That's okay.

As for the emotional tug-of-war that you endure with this disease, you definitely need a method that will help you channel some of the frustrations. That could be your personal support system or a hobby that helps you re-focus. One outlet that has helped me get through every peak and valley has been my private journaling. As a life-long, avid writer, I developed an important connection to those blank pages. Things I could not bring myself to discuss with others, I would write about. Each line seemed to help clear my mind.

Only during extremely difficult times did I stop writing. When I was going through episodes of rock bottom battles, I actually have journal entries where my penmanship is illegible. That was the result of being much too sick and weak to even form words. However, during these times, I didn’t even realize that my writing was that unreadable. I remember being propped up slightly on pillows, unable to hold my journal securely, but I just went into auto-pilot with my pen to paper. My goal was to simply get some of the mess out of my head. The pen was like a broom; writing was my way of sweeping the debris out of my mind.

During the lapses of time showing no entries…I was usually in the hospital or physically unable to even conduct an activity as slight as writing. Currently, I find it ironic that I must coax myself to go back through these journals; doing so is a stress-producer within itself, but I am doing what is necessary for me to move forward. I hope that my candid revelations will provide solid information and key emotional ties to those living, in some capacity, with Addison’s Disease.

Friday, July 2, 2010

ENTRY # 2 - Bracing for Life

Simple Description of Polio/ Poliomyelitis: Also called polio or infantile paralysis, is a highly infectious viral disease that may attack the central nervous system and is characterized by symptoms that range from a mild non-paralytic infection to total paralysis in a matter of hours.

Let’s get to the point. Either directly or indirectly, most of us will be touched by a medical disaster, an ongoing illness, or tragic accident. Very few of us will escape this ugly side of life. Either you or someone you know and love will be impacted, eventually, by some kind of medical issue. It's an inescapable fact of life. Life, death, and everything in the middle are the consequences of our existence.

Most people enjoy a healthy youth, fortunate enough to be born in and to remain in tip-top condition. Others are given a healthy body, but they choose to destroy it or to compromise it by their own destructive methods. Maybe you are free of major illness or injury, but are witnessing a loved one slowly decline. One thing is for sure...the more historical a person’s physique becomes, the more likely it will be that many of life’s ailments will settle in as their companion. However, as my young, but wise mother used to say, “You don’t have to be old to be afflicted.”

In order to fully understand my personal experience with developing Addison's Disease, my past with another insidious medical condition must be exposed. Throughout my entire life, I have been accustomed to seeing the impact of disease and viruses. My childhood household and my adult household lived with the realities of such things. No doubt, I am beyond thankful that Polio is no longer a devastating threat to the United States. My mother's body was ravaged by Polio long before I knew her as "mother." I never knew her without the attached label of "Polio Victim." That's probably a HUGE reason I despise the word "victim" for our medical battles. I don't want to be a "victim." That implies that the condition itself had an upper edge. Regardless, Polio did attack my mother at a young age, but this little word, "Polio," could never define my mother. The picture above captures my mother's legs. The source is not cited, although my Grandmother will likely give me the proper information so that I may add the source. I believe my mother was the 5th person in Texas to contract polio. Such innocence and youth ripped away.

Perhaps this attitude helped me through my own major battles with Addison's Disease. I'd like to think that my mother's brave battles helped me fight my own. As most of us know, the solution to the devastating Polio virus didn’t come soon enough for too many people. My mother included. Even many years after her contracting the Polio virus, we had short times of mourning ongoing ramifications from Post-Polio Syndrome...a not-so-great situation for people aging with Polio.

Another area of life that my mom's condition taught me to deal with adequately is all the labeling that inevitably goes with having a medical issue. I have heard all of the publicly acceptable terms used to define my mother’s general physical appearance. Constantly, through the years, new terms replaced out-of-fashion terms. She was a so-called “Cripple.” Others referred to her as a “Handicapped Person.” Then, we have the widely used word, “Disabled.” Better yet, she was “Physically Challenged.” These words were funny to a family who didn't see their mother as anything but capable.

Far from being official Word-Police, our family would hold discussions about every new politically acceptable term and we would make it a hysterically funny event. After all, being “physically challenged” is not a very helpful definition. Could it refer to a person who needs glasses? If you cannot see after taking off your glasses…Are you then disabled? Doesn't abnormal eyesight constitute a physical challenge? After all, troubled vision requires compensation through medical intervention. Are glasses or contacts sort of like crutches or a brace? I can see it now, my marketing for an eyeglass company, “Stop by and check out our Eye Crutches!” I am so grateful that my family gained the incredible ability to laugh at unlaughable situations. We have a naturally crass way of communicating. As for the rest of you out there, clean those eye-crutches and read on!