#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

____________________________________________________

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

http://youtu.be/2u7RJ8kCu4s

___________________________________________________

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

http://youtu.be/YzHcVy33-AU

___________________________________________________

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

http://youtu.be/mOHU6erM0j0

__________________________________________________

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

#63 - Wow Weekend

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

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

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

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

Wedding dress shopping. Not a contender.
Easter Weekend 2011 beginning...Good Friday.

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

My niece, Shaye. Playing in her cousin's cowboy boots.

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

My oldest, Heather & her fiance, Henry.

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

My youngest, Stefie, with her boyfriend, Brice.

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

My husband's little niece, Aimee and his grand-nephew, Jace.
Of course, Howdy the big dog is part of the crew.

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

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

Me and my youngest daughter, Stefanie. Easter weekend 2011.

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

Heather and Henry eating mom's fresh Pesto.



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



#62 - Can You Tell?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#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.