#84 - I Like Tuesdays

Mondays always seem to be more difficult than the other days of the week. We are having to get back to the grind of things when we really should be recuperating from our weekend activities.

Actually, as I was raising my daughters during their younger years, I would be slightly thankful for Mondays because the weekends were so crazy with everything they "needed" to do that I was so happy to be back on schedule come Monday morning!

However, since I have battled with Addison's, and, YES, I do mean BATTLE, I've found Mondays to be an astronomical hurdle in my life. On the weekends, I try to do as much as I can and my "to do" list on weekends is always long. I'm usually pulled in a hundred directions while trying to live up to my own ideals of what needs to be tackled. This past weekend, I was standing on a ladder, caulking crown moulding in the formal dining room. Then, I had to caulk the chair railing and baseboards to prep them for painting. Then, I began the painting of the high gloss white to help it all "pop."

Then, I also worked in my former office. I say "former" office because it's not been MY office for years. After Hurricane Ike destroyed our home in 2008, that room became the catch-all room that makes me think of that show about hoarding every time I see it. Everything got shoved into that room because the office seemed to be unimportant when compared to the other rooms, so the office was treated with disregard as box after box and item after item was shoved into that space.

Over time, I had been sorting through the mess, but it was overwhelming. This past Sunday, my husband actually stepped foot into that office, after all these years, and he began to add his muscle power to move around the boxes and items that needed muscles to move. Together, we make a great team. It almost looks like this room will finally make a recovery. Of course, I told my husband that he would be able to get another salt-water aquarium in that space, if that room gets FINISHED from head to toe. Maybe this is the reason for his sudden interest in exploring his organizational skills. Whatever the reason, I am grateful to have help.

A husband and wife should always be a team in a house. Of course, I do the majority of the daily cleaning, but there are times when we need to kick our energies in together to make a marked difference.

It felt good to go through 25 years of married life's documents. "Honey, here's a receipt for that VCR we bought in 1989."

Well, it wasn't quite that bad, but it felt like it. Needless to say, I have discarded approximately 5 large industrial sized black trash bags full of outdated, unwanted, depressing, just-take-up-space kinds of paperwork. Every trash bag I filled to the top would prompt me to throw a little party for myself on the sidelines --- almost like a football player doing the touchdown dance. That was me.

Since I've already handled the yucky tedious part of having to go through every file drawer and every file, one by one, to decide what stays, what goes and what should be scanned. Several file drawers later, I am FREE. Now I have drawers that are better organized and that also have EMPTY ready to use pendaflex and manila folders. We are ready. All the junk files are gone. GONE! Out of my life!

I cannot stand PAPERWORK!

My hunky husband just made himself drastically sexier on the sexy-scale by deciding that he's no longer too good nor too removed to do such things in his own house. He stepped foot in that office and my heart sped up significantly. Watching his long lean muscles in action provided me with excellent entertainment. I really do feel as if he can do just about anything!

By the end of the afternoon we had cleaned out the office. It's nearly finished. Next weekend, we'll get it all wrapped up. We still have to rearrange the furniture and that will be tricky. We have a massive executive desk and an antique upright grand piano to move. It will be fun, but the "Relaxation Room" will be opened up and made easier to walk around in.

Meanwhile, all of this work and fun that I've had all weekend - oh yes, I also had my four year old niece stay with us ALL WEEKEND LONG and she is a very busy young girl, for sure.

Anyway, the weekend was finally at an end and as Monday morning began to appear with the sunrise, I felt drained to the point of being non-human. I was melting and unable to re-solidify. Not to mention, this Texas heat is unfair. Texas is accustomed to hot weather, but with my Addison's disease being difficult, the heat was magnetized and I nearly forgot how to sound words.

A fun weekend this summer with my youngest, Stefie.

My body just wouldn't cooperate. I woke up feeling as if I had just laid in bed after running for two days from the Texas Chainsaw Massacre dude. I took a double dose of my HC, but it's just not enough to send a full recovery that I wanted RIGHT NOW! I wanted my Monday energy BACK! I laid there and did have some internal wailing as I missed the good old Mondays I once had so long ago...drained, but still physically strong. Now, most Mondays find me bed-ridden. My body hits some kind of mysterious point where the drain for my life's energy has been pulled and my body is empty.

Allowing myself to lounge around is difficult. I'm one of those people who can't sit still for five minutes straight. I diddle here and diddle there and fidget a lot. But, Mondays are so exhausting that my diddle diddle is kaput. So, I grabbed a good book and tried to get comfortable in bed. I decided that the exhausted body would not recover from the exhaustion zone until it had been allowed to recharge by getting the rest it needs. So, I read a lot. I flipped through the recorded shows on the DVR and did some catching up on "I Survived..." so I will know how to get out of a desert after six days in my high heels that I used as a water bowl and ate part of the leather. I did some blogging. And, I felt a lot of frustration because there was so much OUT THERE that I wanted to be able to get up and tackle.

That great summer day with my oldest, Heather.

I guess I should try to pace myself on the weekends so that my Mondays aren't so horrid, but I find it worthwhile to do everything I can with my family and my husband while I can and I'll just take the Monday to recover as my body feels like jello for the day.

The great thing about Addison's disease is that when Tuesday rolls around, there's an excellent chance that I'll again have great physical energy and better mental clarity - maybe the double vision will have even disappeared.

So, I like Tuesdays. I really do.

#83 - Medicine Lets Me Live

Taking medicine with chronic illness is a part of life. Before I was diagnosed with Addison's, I was medication free. Perhaps I would take a Tylenol, infrequently. Medicine just wasn't needed.

In fact, I gave birth to both of our daughters drug-free. I don't know how I did it; my stubbornness was indeed incomparable to many. I was determined to have natural deliveries, and I did not want to be overshadowed by a haze of drugs. Well, I got exactly what I asked for along with the good and the bad that came with that decision. Ouch!

The first picture of my daughters together at home.

But, today, I am a walking medication encyclopedia from all of the different medications I've had to take for my medical conditions over the years. Some medicines are here to stay for the remainder of my life and others are temporary on an as-needed basis, but still just as critical. Even with my health condition, I still find myself rather resentful that I need little pills to function. I can't help but miss the days when I didn't have to think about taking life-saving daily medications...I just woke up and bounced on with my days.

Me - still a kid, but also married and starting my life with David.

Then, on the other hand, I am deeply grateful that our medical field has come so far as to develop medicine for Addison's. I shudder to realize that such a relatively short time ago, there was not adequate treatment for this disease and death was imminent. I was undiagnosed for so long and near death when the "Addison's" answer finally appeared, but it took my body calling a Code Blue for the answer to occur. Therefore, I have unending compassion for those who have felt themselves disintegrate into a cloud of Addisonian / Complete Adrenal Failure mush before dying.

My girls - about the age when I began getting sick.
They gave me tremendous determination to pull through the worst.

The weakness that I endured from being so sick and living in a prolonged state of unknown Addisonian Crisis had been profound, and I don't think a person can imagine this kind of melting away...it was exactly like being trapped in a body that is slowly becoming fully paralyzed to the point where you can barely hold your eyelids open.

In fact, my body had gone so deep into crisis that my cardio-functions were shutting down. Basically, I'd exhale a long breath out and my body was too worn out to automatically take the steps to draw in another lung-full of air and my heart could not keep up the pace needed to sustain life. Eventually, these basic bodily functions started puttering. God only knows how I made it through those times.

After I had the official Code Blue called while hospitalized, I was amazed because that EXACT sensation was familiar to me. Obviously, I had been coding off and on while at home, somehow pulling out of it, for weeks. The realization was terrifying. THIS is a code? I've ALREADY GONE THROUGH THIS several times. Often, it'd occur in my sleep; I'd awake without any air in my lungs, and I would go through horrifying moments of opening my mouth and doing all I could to pull in air. It almost would feel as if I were under water, unable to breath, very similar. Not pleasant.

My girls so bonded and this is the time in our lives when
I am trying to recover from being sick for so long.

I must say, the only part of my code in the hospital that was additionally terrifying was the soaring heart-rate as my blood pressure sunk so low that it could no longer be registered. My heart beat so hard and furiously in the attempt to get things going that it literally rocked my ragdoll body with involuntary movements. No, that was not too comforting. I felt like an alien invasion was taking place in my body as I lay helpless...How could this be happening?

My husband, best-friend and my personal hero.

Thank God my condition was diagnosed and the medication that was immediately started, upon disease confirmation, was no less than miraculous for me. My body that had grown so weak that it could not sustain life was suddenly surging with vibrancy again.

My girls - we made it through terrible times and came out stronger.

So, I still don't like taking medications. I really don't know anyone who "likes" it, but we know it's completely necessary and after you learn that your life depends on it, you take it seriously. But, I better not experience any more body break downs because my medication routine is already complex enough. And, I wish to have bought stock in pharmaceutical companies...maybe then I could one day recover my own personal investments that have been made into this field. I'd gladly take dividends along with my daily dose!

#82 - True Strength

Being flexible in life is a key to having consistent joy. My body has been pretty rough on me and has caused my direction in life to have plenty of unexpected, shocking detours. I found, years ago, that going with the flow is imperative to my adaptation to new circumstances. Trying to hold on to the way things "used to be" will only lead to heartache and frustration. Besides, just because things seem to be different or even more difficult, it does not mean that the situation cannot be embraced.

My oldest, Heather, playing with Tux.

Encountering challenges can bring richness to your life. Having health battles can magnify the simple things in life and the smile on your face might be easier achieved. However, this is all about attitude. For myself, I had to often tell myself, as I've told my children, "You need an attitude adjustment!"

My youngest, Stefie, ready for another formal affair.

For the most part, I have adapted to having hard days. For 33 years I had a body that essentially did everything I asked of it. In fact, my body was full of strength, amazing endurance and my mental sharpness allowed me to be a legal/technical business writer for years and years. I was blessed. And, I'm still blessed today on deeper levels.

My girls when they were so little!

However, now, my body is not as strong. Part of the problem is that my body attacked itself. And our body is made so miraculously by God that once it begins to have health issues, it is a challenge for man-made solutions and medicines to restore it to the "natural" condition. As the years passed, I had organs fail, bones collapse and body parts shift to places that were not normal. I am a walking miracle, according to several doctors' opinions. So, I am indeed blessed.

This past weekend as my husband and I tour a
wedding venue for our oldest daughter. Love his six eyes.
He's still the most handsome creature I've personally ever known!

The challenges have taken a toll, yet I have found my renewed strength in other parts of life instead of depending on it coming from my physical strength.

Lessons about lasting endurance often come after you have been seriously ill for an extended period of time and everything in your life changes. Frequently, your mindset changes; you'll never be the same. Serious illness can create huge changes, which require that you endure suffering and hardship. This kind of endurance lesson is not by recreational choice. It's not a trip-to-the-gym kind of endurance; it goes much deeper than that because there is no "resting" state. You can't always escape your situation.

For those facing serious illness, you are learning about certain kinds of strengths and endurance as bad circumstances are cast upon you.

In my situation, I had been told on numerous occasions that I probably would not make it. I needed two serious cardio-thoracic surgeries that could be performed by only a handful of surgeons nationwide and we learned a terrible thing...surgeons don't always like to take a risk that is already bad enough and make it worse by adding Addison's disease. It was a rare surgery complicated by a rare disease. Actually, the Addison's disease wasn't the problem, it was simply an added complication. At one point, I was flat out told by a cardio-thoracic surgeon that I'd not find a cardio-surgeon that would touch me and my surgery needs with a ten-foot pole because the surgery risk was higher than open-heart surgery, and the Addison's disease tipped the scales far out of my direction. That night, in the hospital, I could only cry. My husband and I cried together. I was told to go home and to remain as comfortable as possible. Until what? Until my children found me dead? It was an unthinkable time in my life. My upper body was not getting enough blood flow; blood was backing up and puddling around my neck, and a pulmonary embollism was expected at any time from the constant blood clots...I was living on borrowed time.

Yes, I did find a surgeon. This in itself was a miracle. I had a brilliant cardio-vascular surgeon and he hired the very best on his team to help me come out of the surgery "alive." It was touch and go. I had internal bleeding and one liter of blood leaked into my chest wall, collapsing my lung...my phrenic nerve was nicked and one of my eyelids drooped so badly that it wouldn't really open for about a year. When I'm tired, it still gets droopy. My first rib was removed and the muscles in my neck were cut out and I have artery clips in place after the bleeding would not stop. A year later, I had to have the same thing done on the other side. It was a brutal time in my life.  But, afterward, artery dopplers and angiograms finally showed a continuous pulse to my upper body. SUCCESS! I also no longer felt as if invisible hands were constantly around my neck strangling me. I was thrilled to not be strangled any longer.

So, I know suffering. And, these surgeries have not been my only battles. There have been more. These two surgeries were in 2005 and 2006. But, they helped to teach me that life is not always a breeze. On a deeper level, as my life neared an end, I began to move forward in the hope of Heaven. This attitude is what helped me to have joy even in my worst, most despondent of times. What did a dying person have to look forward to? Well, I found tremendous peace in this question as I began to quit putting my hopes in this world and began to think beyond my earthly years.

I will say, that to face this kind of future is a tall order and not for the meek at heart. Neither were the shoes that my husband and daughters had to walk in during my life saving surgeries that came with a huge price. For reasons, I still don't understand why God decided to keep me around. But, I've learned to quit asking the "Why" question long, long ago. Through very serious, major surgeries AND Addison's disease to boot, I kept surviving against the odds. I savor life because I've already come so close to confronting and accepting the end of my life; I am always thankful for the additional time I've been given with my family.

Suffering and endurance can teach you to find triumphant moments. This is when true strength is found, and for people who have gone through similar battles or have lived with a loved one as they fought to live, you have discovered that this kind of strength is incomparable to any other kind.

#81 - Chicken Fun at Home

This is what I do for fun these days...enjoy the chickens. I've become a city backyard farmer. We have seven chickens, well...two of them ended up being roosters. But, they are delightful and entertaining and sometimes scary. I love learning every day about chickens...here's one of my lessons caught on video.

#79 - My Comrade of 25 Years

COMRADE: is defined loosely as a person who is an intimate friend or a fellow soldier. A comrade is someone who shares the best and the worst with you and who is willing to help pull you through it all.
 
I can't believe it! Today is my 25th wedding anniversary. My husband and I grew up together and now have hit this huge milestone that speaks volumes about our level of commitment to each other.

25 Years ago, we eloped outside of San Antonio, Texas. We were kids.

Three months later, we were married in church. It still took another
month before we were finally able to live together for the first time.

This morning, I was thinking about so many moments during our many years together. So many good times and a few bad times, but overall, it has been an amazing marriage full of blessings.

In our 30's with downtown Houston in the background.

When I got sick with Addison's disease, my husband did more than stand by my side, he fought this disease with all his strength. He helped me to survive a long undiagnosed state of Addison's Crisis that caused me go into a Code Blue in the hospital at only 33 years of age. He helped me get through the worst of times. In fact, he would be my legs, my arms, my voice...he would literally carry me as he lived in exhaustion so that I might survive this disease that nearly took me out of this world.
 

 
Still, this man is my husband. He is the one I love with all my heart. He is the one I dedicated my loyalty to and my faithfulness to and my heart, body, mind and soul to, til death do us part. This kind of love is beautiful. Even on the rough days, it is a treasure.

Snorkeling at the reefs in Grand Cayman Island.

I didn't marry him for him to be my hero, but that's what he ended up being in my eyes. He fought his own battles while helping me win mine. So, together we triumphed. Yes, there were times when I wanted to choke him, but he never gave up on me, even when it would have been easier to just let me slip away and not make that 911 call. He always flew into action, doing everything he could to pull me through. And, I did. Even when I was so far gone that I couldn't respond any longer, but I could always hear his voice. During those times, I just wanted to touch him.
 
These days, my husband and I love spending time together. As we get older, we find that the ticking moments of time passing has become more precious and we want to be together for as many of those swiftly passing moments as we can.

Together at a Texas A&M football game. I am having a rough day, am
trying to camouflage my shirt after I had just fallen while carrying a
plate of food. I stumbled and fell against a door, hard. The food
went against my shirt. A mess. But, we still had an incredible time.

How often does a person have a love like this? I do not take it forgranted. One smile from my husband and I'm spinning inside; he lights me up, even after 25 years together.
 
I love this man because he's not only my husband, he's my best-friend. A true best-friend, not just in title. More than that...my husband is my comrade.

The day our oldest daughter received her Texas A&M
ring - a day of great celebration.

Just this weekend, I was taken on another unusual date by my husband as he signed us up for a glass fusion lesson. Together, we made jewelry. Since we'd already taken classes in stained glass years ago, this was like riding a bicycle. We were free to take as long as we wanted, so we sat in the stained glass art studio and created little beautiful works of art that would be fired in a kiln and melted together to created fused glass.

I'm in awe at the few pieces we created (works of others are mixed with our own).

This was an amazing date and I am always filled with huge love for my husband when he shares such fun moments with me. We are truly like kids together, still trying to find our way in the world and exploring as much as we can together whenever we get the chance.

I love and adore this man.

So, I am grateful to have a Heavenly Match here on earth. Together we've created a beautiful life. 

Happy Anniversary to the love of my life. My comrade. May we
be blessed to share another 25 years of excitement.