#98 - The Purse

The other day, my husband and I were walking through the store and I shifted my purse from one shoulder to the other. This simple move brought back a flood of memories of the year I had been diagnosed with Addison's disease. That year, I did not have the strength to carry a purse.

Of course, I'd lived my entire girly life carrying some sort of purse or another. The sudden illness and exorbitant weakness made my purse feel like a sack of boulders. For all my years, until Addison's disease, I didn't even notice the purse hanging from my shoulder or a baby bag looped to my arm or a huge purse that held everything a toddler or small child could desire as a distraction.

But, suddenly I found my purse to be unmanageable. However, I did not have the adaptation yet to quit carrying it. Insistently, I would bring it with me, like everything was normal, yet my situation was far from normal. Since walking around was a struggle, having to carry a purse was like pushing myself further into the sinking sand of weakness. I would end up in a horrible struggle with my stupid purse.

Many times my husband ended up carrying my purse. He never complained about my continued denial to face facts pertaining to the purse. Actually, I never asked him to carry it, and I never wanted him to carry it, but he would go into authority mode and slip it off my shoulder to effortlessly hold it in his hand as we walked along together. I'd argue, "Give it back to me; I can carry my own purse." He would just look at me with a pleasant expression and refuse to hand it over...he never worried about his masculinity or his image. This man is completely at ease with his manhood and I think he'd not even give a flip if anyone dared to say a word about him carrying a purse...actually, they'd dare not.

I don't think many people would approach a Deputy Sheriff to ask him about the black purse at his side. He always cracked me up though. He would put the purse on his arm and with the same arm, he'd hold my hand. At times, I guess it looked as if we were co-carrying the purse.

So, this past week as I was walking around the store, I realized that I have much more strength to be able to carry around a little old purse all by myself...well...to give my purse it's due justice, it's a Makowsky. For those of you who don't know about this brand of purse, you should know that it is a lot of fun to carry around, kind of like the souped-up-Porche of purses.

Doing "normal" things, such as carrying a purse is something I do not take forgranted. If you confront times of challenge that slap you in the face with shocking changes in your abilities, such as not being able to do something minuscule, it is wonderful to re-discover such little independent pleasures!

#85 - Doctors, Nurses, Waiting Rooms and Heros

I am so thankful for the good doctors in my life. Of course, I've had mostly extraordinary nurses in my history with Addison's disease. The waiting rooms are not so much fun, but I've learned to make the most of them by bringing my journal and a good book...just so I can alternate between the two.

Today, my youngest daughter and I went to the cardiologist together. I love my cardiologist. Well, I love him in the manner that is fitting of loving someone with great respect and admiration after they've saved your life, literally.

Dr. Nadir Ali saved my life in 2001. After visiting too many clinics, doctors, hospitals and on and on and on, for many long months, I ended up in the hospital and in the direct care of Dr. Ali. After I coded, he used his brain to put my symptoms together and that determined cerebral power led him to rapidly order very unique tests to determine my rare medical condition.

Within hours, I was being given life-saving medicine and the end of my life was gratefully extended for much, much longer. In fact, I am approaching my ten year anniversary since my diagnosis. Within two months, it will have been ten years since Dr. Ali went beyond textbook knowledge to explore his impressive brain for a answer befitting a true physician, an authentic healer and remarkable man.

Anyway, today, my daughter and I drove the entire way to the cardiologist's office, but we were told at the receptionist's window that our appointments had been cancelled, as of last week, after the Dr. decided he better hurry and take a trip with his kids before school resumed. Wow, he is a life-saving physician and he actually takes time out of his extremely hectic life to take a vacation.

As a doctor of his caliber, it must not be easy to fit in personal time. I'm sure he looks at all the patients who are in such bad shape and he must feel, at times, that he simply can't keep up. Then, I hope he remembers the time when he saved the life of a 33 year old woman who had two young daughters and a devastated husband watching their mom and wife disintegrate before their eyes...without any answers...until Dr. Ali came on the scene.

I wonder if his children know that their daddy can't save everyone, but he is a hero to many people. A fireman running into a burning building to pull out the child hiding in the closet is a hero. The police officer who goes into trained, ingrained action after seeing the criminal attack a victim is also a hero. The soldier on the battlefield who gave his life for the concept of freedom is a hero. And, the doctor who walks into a place that is not only for those who are healing, but a place for people he sees daily in their suffering and dying moments while he tries to make a difference...is a hero. Do his kids know that they are vacationing with a hero?

Probably not. To them, Dr. Ali is not a hero-extraordinaire...he must check his title at the front door of the house and simply be called "Dad."

Because Dr. Ali saved my life, I was able to be with my
mother during her final moments of life in 2006
after she'd lost her battle with breast cancer.
Here is my mom and dad at M.D. Anderson. Shortly after,
she joined God in His house at 56 earthly years of age.

This is the day our oldest received her Aggie Ring.
A day made possible because my disease was discovered.

With my increased strength, I could make it to
watch my daughter perform her Officer duties on the
school's dance team. She danced like a mighty angel.



Then I watched
my youngest graduate from high school.



The years brought greater rewards as I got to watch
my oldest graduate from Texas A&M in record
time with her degree in Biology.

These are the days that make parenting a dream.

Back to my daughter and I standing in the waiting room at Dr. Ali's office...the receptionist informs us that our appointments had been cancelled by a phone call made days earlier; we were flabbergasted. My daughter was ready to melt to the floor; she'd returned early from a trip to Florida to see Dr. Ali. Yes, the man is THAT good. She stood there stewing, thinking of her incredible moments swimming with the dolphins and she was ready to throw a two-year old fit...What? Cancelled? All this trouble for NADA!?

Me and my youngest...obviously not in a waiting room.

The receptionist calmly and professionally consults her computer database, "We are so sorry, but we show here in the notes that you were called and a message was left to inform you of the cancellation and to try to reset the appointment for next week. The number the nurse called to leave a message is ***-***-**** and she dialed that number on July 29th."

Yes, that number is MY cell phone number. My daughter's wrath turned toward me. She glared at me with her blazing blue eyes shooting darts my direction. I shrugged...OOPS...Did I mention that I am HORRIBLE about answering the phone or checking my messages? I might check my messages once every five weeks. Plus, a few weeks ago, I took a shower with my phone. It was stuck in my bathing suit, between my cleavage and I stepped in the shower absentmindedly to drench the phone along with my bathing suit and body...doesn't this happen to EVERYONE every once in a while? Cleavage can be a dangerous thing.

About the phone avoidance thing --- this happened to me after I became very ill with Addison's disease. I quickly learned to avoid the phone because I simply didn't have the energy it took to talk. And, I didn't want to talk about it. I'd already seen too many shocked expressions after they'd visited, I didn't want to prolong the emotional agony by hearing the pain in their voice. Also, callers could hear the marked weakness in my voice and I got tired of constantly being reminded that I sounded and looked as horrible as I felt. There was no more "fake it till you make it" left in me. So, I withdrew, in a big way.

With my disease, my family entered a world full of doctors, nurses and hospitals. Daily, the mail was full of insurance papers and billing records for every diagnostic test, hospital stay, clinic visit and doctor consultation. My arms constantly looked black and blue, even though I do not bruise easily. I even had hospital stays that required IV lines in my neck and chest and blood to be withdrawn from the back of my knees because my excessively low blood pressure would not allow regular veins to stay open.

The life I'd known, which had been relatively free of seeing a doctor except for a yearly Well Woman exam was gone, gone, gone.

But, during my recovery, I became more discriminating toward the level of care I received from a doctor and medical establishment. I can tell you that all doctors who followed Dr. Ali had a HARD ACT TO FOLLOW. If they were lacking, then I professionally stated my case, perhaps taking my business elsewhere. And, Addison's disease DOES result in business for the medical field. A patient with Addison's disease is likely to require moderate to heavy medical treatment, for life. We become a money-making machine for the medical industry, so I decided to start stepping up and calling out the shady treatment episodes.

My oldest, shadowing Dr. Ghosh during brain surgery.
Another remarkable, beautiful doctor in the Houston area.

Then again, the entire ordeal and massive experience I've gained with doctors, nurses and waiting rooms has forced me to recognize the above and beyond excellent care of so many who have helped me continue to survive. I've had many incredible medical professionals who have shown their deep capacity for tenderness toward humanity by their delicate, forceful, straight-forward, kid-gloved, harsh and soft caring treatment, as necessary. For those who knew how to find a balance...I am thankful for your chosen profession.

And, I continue to be connected with doctors, nurses and waiting rooms. In fact, my daughter and I have tag-team appointments re-set to see Dr. Ali next week. He is well worth the wait. I will be especially grateful to sit for as long as it takes in this particular waiting room.

In fact, I'll be dropping off a few good books to donate to his lobby.

I'll wait and I'll read. Leisurely, I'll read and watch the time tick slowly by until my name is called. I can spare some time for Dr. Ali, after all, he is the one who made sure that I had more time to spare.

Amazing times have multiplied since my
diagnosis, and I thank Dr. Ali for helping me
to continue this beautiful life.

#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 it...you 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 time...it 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!.

#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 blog...it'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 yet...it might be good to watch together and to sort of "plot" the appropriate locations on your body beforehand. Make it a fun gathering!!

http://youtu.be/PWF0T2GMFb0

#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!!!!

http://youtu.be/30y20mvo2Jg

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

http://youtu.be/2u7RJ8kCu4s

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

http://youtu.be/YzHcVy33-AU

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

http://youtu.be/mOHU6erM0j0

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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.

http://youtu.be/f7TRxzCjmvY

#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.

#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 practice...you 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 reason..my 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 girls...in 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.

#59 - Once Upon a Time...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#38 - Suzanna's Question; My Miracle

Suzanna is an adorable blog friend, and we regularly read each other's blogs. Hers is simplysuzanna.blogspot.com and you can easily find her under my "Followers" reference. Suzanna is creative, interesting and she has Addison's disease. That gives us an instant connection on a deeper level.

Recently, she posted a comment on one of my entries and asked me a question, "What was it like for you when you were first diagnosed?"

I decided to try to answer this question the best way possible. My "after" being diagnosed had so many changing hurdles over an extended period of time, but right now I'll address how life treated me immediately after my diagnosis.

Actually, I had become critically ill because I had been undiagnosed for a very long time. My health had deteriorated to the point of not being able to sit or stand. I could barely lift an arm and could not even feed myself a full meal. I could only eat a few bites, then I would drown in a strange exhaustion that could not be explained. Once hospitalized, for medical tests, I had to be moved from the hospital bed to a gurney and wheeled while lying down to the next spot for testing. I was very, very weak. Breathing had become difficult. In the hospital again, during the Fall of 2001, I coded. The cardiologist assigned to my case was pretty brilliant; he was the first doctor to put all of my symptoms together so he could order the correct tests and that's how I was finally diagnosed.

Dr. Ali had some of these medications administered to my IV line and within thirty minutes, I was able to walk - with the help of a physical therapist. So, right after my diagnosis, one of the most beautiful moments I remember is that walk I made around the nurse's station as the physical therapist held firm to the loop on my back that was attached to the belt around my waist that acted as an aid for the therapist to help steady my walk. But, I felt like breaking out into a run. I felt so strong and alive and almost "normal." It had been so long since I had felt "normal." Perhaps a year had passed with my body slowly weakening; I had been adapting to the increased weakening, without much notice until my body would not cooperate at all any longer. So, this day of being able to walk around was a moment of triumph.

Back in my hospital room, I was able to sit up in bed by myself. My lunch was brought to me and I was able to eat by myself and the food tasted good, and I could swallow and hold the fork steady. Before my diagnosis, eating was exhausting. Later, I discovered that the digestion process itself had been a stress my body could no longer endure, especially since I had no reserves. I was completely depleted. Once the hospital got my AM Cortisol levels back, the doctor told me that he did not know how I managed to stay alive for so long - he said I should've been dead, but perhaps my addiction to V8's had become my life-line...the needed sodium probably pushed my blood pressure up just a tad to sustain my heart and lungs.

I was sent home with three medications: Florinef, Prednisone and Klor Con. Later, my assigned endocrinologist changed the Prednisone to Hydrocortisone because he said it was less harsh and better for a patient needing long-term treatment with steroids. The Klor Con is a potassium supplement, but this area leveled out better as well over time with the other medications. Truthfully, the doctors did not know what to tell me about dosaging. All the doctors appeared a bit frazzled. Finally, my endo pulled out a resource and read it to me...stating 30mg of HC to be the "standard" for daily dosaging. I asked him if that recommended dosaging would be the same whether you were a 260 pound man or a 130 pound woman? He said, "Yes, it's what we've got for now." I realized that I had a major issue in front of me - a disease that had little documentation and an across-the-board "recommendation" that amounted to a little understood disease. The endo suggested that I break my daily dosages into two dosages, but that I would have to simply go by trial and error for dosaging amounts and times. I'd have to figure out what works best for my body. It was confusing. My endo explained the normal process of cortisol release for a body who has working adrenals and this did help me to approach my dosaging with some logic. Early morning, need more...evening approaches, tapering is required so the body can actually get some sleep...in between, that is the stickler.

Immediately out of the hospital, for a couple of weeks, they initially kept me on at least 60 mg per day of steroids because my body had become very weak and sick from being misdiagnosed for such a long time. However, it turned out that I definitely did not need the "standard" dose of .1mg per day of Florinef. In fact, I experienced dangerous side effects starting with the vessels in my eyes bursting. It hurt terribly and I could barely close my eyelids over the vessels that had burst, it felt like tiny rocks in my eyes. I was informed that my internal pressures were too increased and that the vessels were imploding. Lovely. I took some time to truly consider what this meant as I looked in the mirror at my bloody appearing eyes and knew the seriousness of the situation. So, I cut back on Florinef, drastically. I did not require much Florinef, perhaps because the Klor Con helped to offset that end and I was still drinking V8, mostly out of habit and of fear of quitting.

Today, I take a half pill of Florinef and it seems to be a perfect dosage for my body. I always keep Klor Con on hand, taking maybe a couple per week, more if I am out in the Texas heat. But, I did suffer pretty badly before we finally figured out that it was the Florinef making me feel as if my head were going to explode or pop off. I had one Dr. argue with me about my dosage of Florinef, he was one of those "textbook boys," but my first-hand experience had taught me a better lesson...dosaging often depends on the person and their lifestyle. Every person is unique; Addison's is one of those diseases where you must fine-tune your dosaging with the assistance of your doctor. Turns out, for my situation,  I was right to reduce my dosage and my regular endocrinologist's testing confirmed I was on track. I leveled out and felt incredibly better. The vessels in my eyes no longer were blown up fully and I didn't look as scary! After the Florinef was adjusted, I was on the road to feeling more like myself.

I have never regained the same level of strength or endurance I had before Addison's Disease, but I do believe that is because other things with my health were simultaneously going on as well. Addison's Disease added a definite complication to the other conditions, but I am pushing forward 110% at all times. There are days when I feel as if I am Superwoman and other days I feel as if I am too worn out to be worn out.

To this day, I am thankful that my diagnosing doctor crossed the finish line with his diagnosis of Addison's before death could get there first. Every day, I do my best to live right and to stay on track so that I have a better chance of staying ahead of Addison's. After my diagnosis, life did change. Oh, it certainly changed in a BIG way because I still had a rough road ahead of me and the damage of being ill for so very long could not be reversed. Ramifications hit from every side. Yes, every direction of my life and the life of my family was to change in big ways.

When I was first diagnosed, I was incredibly thankful to be given an answer to my body's failing condition and to have a miracle medication mix that allowed me to go from being near a consistently state of being comatose to where I was up and walking. I thanked God for every step toward returning health and to me getting back to being a Mommy! Of all things I had missed when so very ill, it was the little things I did as a mother with two young daughters...making their lunch, driving them to school, dancing around the living room with them, laying in the driveway with them for some awesome cloud watching and all the other "little" moments I missed when trapped in my body and unable to make it do what I needed or wanted. My diagnosis surely reminded me that miracles do still happen and that our bodies are an example of God's handiwork. We are a miracle. Life is a miracle. To put one foot in front of another is a miracle, to smile is a miracle and to KNOW it is all a miracle is what most changed for me after my diagnosis. 

Texas - Gulf of Mexico - Sunrise
Captured by my husband & best-friend.