#52 - Miss those Banana Splits!

My mother died on March 31st 2006 at 57 years of age from breast cancer. Her battle, from the time of diagnosis, was over two years. During her fight that involved radiation, surgery, multiple rounds of different chemotherapies...I kept hoping the cancer would at the least be slowed down. I kept telling myself she'd have at least five years with us through the battle. However, she wouldn't have but half of this time frame. I would have done just about anything humanly possible to buy more time with my mother. I was in my 30's and my mom was my best-friend. She was a fun riot with a gorgeous smile that would chase you down and pull you out of any foul mood.

My mother in the center with me and my sister. In this picture, mom
is at M.D. Anderson during radiation treatment to the brain.

So, this time of year is very difficult for me. I rejoice for my mom's beautiful life, yet I wish to God that I could pick up the phone and have another two-hour conversation with her -- which was our morning indulgence. Later in the day, most days of Spring and Summer, we'd meet up to go get our mini-banana splits from Sonic. We'd sit in her van, eat those little sinful treats and talk some more. The great thing about most moms is that they listen to your every concern, worry, moment of triumph and sadness with a finely tuned ear and your mom is right there with you through it all - she feels what you feel. My mom went beyond that capacity --- she knew how to kick into "friend" mode and how to leave the "mom" mode behind so perfectly. To this day, I've not figured this out. But, I did have a great teacher, so I know that all hope for me is not yet lost.

What I find very sad during this time is that I had been so very ill the year my mother had passed away that I feel sometimes as if our little time left together was severely interrupted by illness for both of us. Yet, I was still working full-time and raising two daughters, doing my best to hide my cardio issue. I already knew that a rarely performed decompression surgery would need to be performed. This involved cutting out a rib, several muscles in my neck and just about anything else the surgeon could cut out to give the artery more room to pump blood through. But, I put myself into auto-pilot so I could live life as "normal" as possible. Few people knew I was so ill, few people knew my mother was dying...it was ridiculous, but I had a hard time sharing things that were so personal. Life was kept at a brutally busy level, just so I would not fall into the deep recesses of my mind and think too much about my reality. On top of my own bad medical news, my mother discovered two lumps and they turned out to be breast cancer. We were overwhelmed. My mother, the tireless helper, became the one who would need a small army of help since her battle would be so fierce and quick.

The year before she died, I had no choice but to move forward with my first cardio-thoracic surgery, a dangerous arterial decompression surgery that required the removal of my left, first rib and some of the muscles in my neck. The surgery could not be delayed. On the chopping block I went and I sure did feel pulverized. They left surgical jewelry inside my chest wall, a couple of adorable artery clips in my thoracic region that will forever be a part of me. The Lana Landscape was changing on the outside and the inside.

But, the real kicker was the collapsed lung that lasted for nine months and the internal bleeding into the chest wall and the nerve damage that prevented one eye from opening fully. I was a complete mess with tubes running from inside my body to the outside world, everything was terribly abnormal and disturbing and painful. And, the worst part was that I was going to have to go back into surgery the following year to do the same thing for my right side. Little did I know, my mother would already be gone by then.

After my first cardio-thoracic surgery, I was often hanging onto life by a thread, in and out of the hospital, especially because my Addison's disease was being pushed to the limits. Through that first cardio-thoracic surgery, my mom was there to help, even as she was battling her cancer. We were quite a pair. Our joint sense of humor carried us through some very dark times. At one point, during a hospitalization, I needed my surgical stress dose for Addison's and we had been telling the staff for over one hour that it had been long overdue. I was slumped over in the hospital bed, unable to talk any more and my mother knew the situation was dire. She stepped into the hallway and began yelling, "She needs her injection now! It might be too late already - get the Endocrinologist NOW!" Guess what? A TEAM with Endocrinology came bursting into the room and the head honcho told his team, "You'll probably never see this again, so pay attention" and he pushed a huge loaded syringe of medicine into my IV. Within minutes, I was able to hold my head up, sit up and say, "Thank you," as five residents stood in awe. I hoped that they would be able to help the next person in my position so they wouldn't die either. But, my mother was the one who saved my life.

My mom in the 70's - holding my newborn sister just before
we left to live overseas in Scotland.

A few months later, as my mother lay in her room of my childhood home, dying, I would often make the difficult walk to her house, which was only six houses from my own, but I struggled to take only a few steps still. My decompression surgeries were not finished. At her house, I would try to sit and stay with her for extended visits, but my body was in such agony and so ill that I could barely sit. My voice was very weak because I didn't have the lung power to get enough air out that was needed to form sound for my words. And my mother was dying. I didn't even have the precious energy to cry like I desperately needed to. With a collapsed lung, I struggled to breathe, but I still took care of most of my mother's personal needs. She'd put her arms around me and I'd be able to lift her and move her as needed. God gave me uncanny strength in spite of my mangled body and inability to take in a deep breath of air.

One day, I was driving her to an appointment at M.D. Anderson and she told me that she was at peace about my cardio health because she'd had a dream that I would eventually be healed. At that time, with another serious cardio-thoracic surgery facing me and knowing that my body would be yet again introduced to bone saws, huge incisions, muscles extractions and scar tissue removal with more artery clips installed, I had a hard time seeing any healing in my future. But, I agreed with her because I mostly wanted her to live out her few remaining days in peace over my well-being. Today, after nearly five years, she is right. My cardio side of health has been "healed" because of the surgeries doing their job. My upper body has a strong pulse and I am no longer feeling an invisible hand around my neck strangling me. Life is better.

My mother died from home on a beautiful day that March...her body was free from pain and able to finally relax into a final release from this world. I went back to work within two days of her passing - straight back into denial because mourning was too painful. I still did not have enough lung power to cry, so I avoided it at all costs. I knew she needed to leave her body, I understood pain, so I did not feel selfish and want her stay in spite of her pain, yet I did not want my mother to go. I'd never have another mother. She was beautiful.

Within approximately three months after her death, I had my second cardio-thoracic surgery at Hermann Hospital in Houston, Texas and most of the same post-operative complications as I had the first time around. But this time as I lay with a paralyzed diaphragm - which is the muscle that controls the lung - I suffered again with a collapsed lung and terrible things too difficult to revisit and my mother was no longer present. I had no mom to worry about any more. No more cancer to fight. No more endless trips to M.D. Anderson as I watched her deteriorate. No more phone calls. No more sharing. No more mom.

Since my last cardio-thoracic surgery in 2006, I'd have to say that her dream was right. Of that condition, I feel so much better. It's taken time and one more related surgery in 2008 to take out more muscles that had been grinded up during the last surgery and I did start to feel stronger and better. Her dream circled me.

So, we're hitting the five year mark of her passing as of today and I want to tell her:
Mom, during our last couple of years together, our bodies just didn't want to give us a break. But, I am still hanging in there. We'll see each other again one day in Heaven  and we won't have anything health-related to distract us from being silly together. I love you mom, I feel your love always, but I want you to rest and not worry about us because you deserve the peace you now enjoy. One day, in Heaven, we'll climb a big banana split and slide down through the chocolate syrup and not gain one calorie! Until then, love NEVER dies.

#51 - On the Farm with Addison's

Having a rare disease that might require emergency life-saving treatment is not so scary when you are surrounded by people who understand the procedures for urgent response to help you through an Addisonian Crisis. But, being in the middle of "no where" and much farther away from the possibility of a fast response requires you to carefully put in a plan of action to protect yourself.

I decided to write about all of this because it is exactly what an Addison's/Adrenal Insufficiency patient should consider when tackling changes such as moving to a farm. Contemplating worst case scenarios can truly help you prepare to avoid the worst. Considering all angles will save you precious brain power when an emergency strikes. Developing a plan of action will hopefully result in less surprises and better coping skills because of rehearsed preparedness.


Cleaning & trimming hooves.

All of this is heavy on my mind right now, especially after we visited a friend's farm this past weekend. She has a goat dairy farm with a lot of chickens. Other items she makes include heavenly goat milk lotion, goat milk soap and goat cheeses. I found the entire farm concept to be very interesting. In fact, I even got an opportunity to milk a goat and found it much easier than I expected.

Look at those smiles!!!!

Frankly, I've never been around goats, beyond a petting zoo experience or at the Houston Livestock Show and Rodeo, so this was new territory for me. As I walked around the field with goats of every size all over the place, I was keenly aware of dangers that might be a nuisance to a "normal" person, but life-threatening to a person with Addison's. The possibility of injury is increased on a farm, unless you have safe practices and a sharp eye and mindset that can stay ahead of any potential problems so they can be avoided.

My current suburb home is within two minutes from a paramedic response team, but our own farmland would be much farther away from any emergency teams. With almost ten acres of land that has major hills, bluffs, a creek and a large 15 acre lake at the back, it would take detailed instruction for a paramedic team to find me quickly. Every time I am on our land, I am aware of this reality. In fact, we cannot even change cell phone carriers because AT&T is the only one who has reception on our land, other cell companies still require us to travel a mile down the road to the closest highway. Our land, located off of a two lane Farm Road is not a priority zone for most carriers, at least not yet. So, I stay with AT&T because the phone is a possible life-line.

The goat cracks me up as she cuddles up inside the metal bucket.

As I walked around the friend's farm this weekend, I could see that I would need to keep emergency medications within access at all times, along with a cell phone. I could envision a call to 911, "You'll find me off the Farm Road, second entrance to our land marked by trellis, take that private road onto the land as far as it will go and I'll be about one acre more beyond the stopping point of the private road in the largest barn." Well, that would be an "easy" version. It makes me realize the importance of having landmarks easily visible for emergency personnel to follow as a guide. I will be working on this angle over the coming year.

With good planning, I intend to maintain control over my own health when an Addisonian Crisis hits and this means keeping emergency meds on me at all times while roving around on the farm. Yes, this is a pain in the rear, but necessary.

As we make our move to live on the land full-time, a process that will take a couple of years, I hope to have a MacDaddy golf-cart so that I can easily access all parts of the land, and I plan on keeping the cart nearby and stocked with an emergency kit to include my emergency injection kit. I certainly don't want to attach a fanny-pack to me all day nor do I want to carry around a back-pack, that is not practical, not when you are with animals who want to nip at anything attached to your clothing.

My husband taking notes about medicines for his goat herd's health.

Before moving to the farm on a full-time basis, I would also visit the local EMS team and provide them with information about my condition and I would inform the local police so they can also have it on file. The great thing about small towns is that you are more likely to be remembered. Instead of 50 families living on my size land, it's just us. The neighbors are spread far apart by a great deal of acreage, so it is easier to know who lives where and to know who is doing what. That's simply how it works. But, since things are more spread apart, it is more critical to get to know your neighbors and your local police, fire-fighters and EMS workers. Safety networking is a smart idea for anyone living in the country.

Part of a friend's small goat farm.

But, I do my best to not let Addison's interfere with my lifestyle. It pushes me and I push right back. Besides, my husband is a livestock man; he finds our land to be his most peaceful and beautiful asset. Together, we look forward to this next exciting phase in our lives and to years of joy as we build our farm. It will take considerable time, but every moment counts.

#50 - Perfection Resides in my Head

I am discovering as part of my "Finding Lana" journey that many of my blog friends write poetry and are creative, artistic and amazing. Maybe it is because we have been forced to explore deeper segments of ourselves, this life and everything that spins in circles around us. I have written poetry for as long as I could piece words together. My journals are full of poetry, many poems were written during my worst moments. I also have a warped side of poetry, but it is always written simply and is my own expression of the moment in which I am writing. Here is the latest "Moment in Poetry."

Perfection Resides in My Head

Day by day, I live this challenging life,

As a sister, daughter, mother and wife.

I have so many labels to describe me, this is true,

But there are no comprehensive tags for me or for you.

In fact, there are unwrapped parts of me stuck inside,

In dark places, unknown sides of me quietly reside.

The Olympic Champion is ready to do back-flips and triumphantly win,

Yes, my inner self is contained, but has the power of twenty men.

The other corner has a captivating singer who always tops the charts,

She is brave on the stage, sings flawlessly and touches untold hearts.

The world traveller in me is going tirelessly round and round the globe,

But, I am wearing exotic, magnificent clothes instead of this old robe.

Another dark spot highlights my perfect body as a ten,

No scars, no spare parts; it is shapely yet reasonably thin.

My secret side is full of love and strength that easily reaches out,

For the underdog I am finally able to cheer and loudly shout.

My hidden self is totally free from disease and pain,

She is surrounded by sunshine and is protected from soaking rain.

She is whole, her ribs are in place, her muscles are all there,

No metal, screws, bolts or artery clips and absolutely no grey hair.

She walks out into the open and without weird swine tissue,

No high-tech pieces and no strange or embarrassing surgical issue.

She finds with joy that cadaver bone is not her internal glue,

She is in tip-top shape, no, she is better than new.

I can admire how she would look in the open, but she lurks deep within,

She is trapped in there, but I am out here, visible with every sin.

My real self is imperfect, broken and sometimes I see flashes of white, purple and red,

So, I stand tall in this battered body while perfection resides hidden in my head.

#49 - Sadness - A Mother's Courage

This morning I turned on my computer and went to my email. My first email is from a blog friend, Barbara Saunders who has a son with Addison's disease. I have previously posted Barbara's story on my blog and admire her strength after such a scary time with getting her son diagnosed. Barbara had sent me an email to let me know that a sweet little girl who has been such a huge part of our Addison's community passed away yesterday. I read the first line and had to run to the bathroom to let myself break down in heartbreak out of view from my visiting niece. But, the heartache runs deep. Our family feels such sadness for Annie's family, yet we are trying to keep remembering that Annie is no longer struggling. Sometimes, man-made medicine is simply not good enough. Our bodies were perfectly created by God and when one thing goes wrong, it can be devastating.

Annie Sullivan, a precious little girl who had been struck severely by Addison's around three years old had never been able to recover fully and in spite of her mother's heroic efforts to do everything humanly possible to save her daughter and to promote a fulfilled life, it was a long-fought battle. Sadly, yesterday little Annie succumbed to the many complications she had been fighting during her short life.

So much beauty in life that the eye cannot capture.

Jean wrote so many eloquent entries to keep us all posted on the trials and triumphs that they faced with Annie. Jean's family, friends, and a tight-knit Addison's community...all maintained regular prayers and well wishes for Annie and we learned from every post that Jean wrote. In fact, Jean taught me a lot about caring for a child with a disability, so many practical aspects she covered with the words of a mother that only experience can teach. I must say that Jean wrote about each hurdle with realness and honesty, her words touched your very soul.

Yesterday, little Annie went to be with the Lord. As I wrote to Jean today, I've been impressed by this mother's ability to face Goliath over and over; she never backed down. Jean was a mom who continued to fight the good fight for her daughter; she has always been the kind of warrior of love that the Lord instilled in each of us, but not all of us are compelled to go into warrior-mode as Annie's mother has done for so long. We should all have mothers who are cut from this cloth.

To Annie...I know Jesus has you cradled in His ever-loving, tender arms and there is rest from your storm here on Earth. If only we had Heaven on Earth, we would all be fine and never need to look to Heaven, to a better day and to everlasting life. But, we are reminded that our time here on Earth is not perfect and that our bodies are failing each of us, sooner or later. For eternity, we have a Heavenly home-sweet-home of permanence. Annie is now finished with all pain and suffering; she is free and is blessed to be a child of the Lord, for her time here is complete. Those who are left behind will mourn and miss her presence, but the Lord gives us comfort in the fact that we all will eventually make our final journey from this temporary shelter. So, one day, the family will be reunited and the Heavens will rejoice in the healing that will be taking place for this strong mother - for Annie's father - for the entire family - they will be whole again and the battles will be finished forever. Til then, may the Lord send reminders of His beautiful bridge of love.

Lord, I pray that You be with Annie's mother and father, be with her entire family and soothe their heartache and send gentle reminders of how each of their lives must be lived to the fullest in honor of Annie, until the time they can all bask in God's glory together forever with joy.

#48 - Pecker & Snookie

Here I am, a grown gal just outside Houston's city limits and I am now living with chickens! Seven REAL chickens to be exact. It is beyond exciting to me because I love, love, love highly fresh eggs and this will finally give me every opportunity to crack open a delectable, incredible egg!

You'd think that being a native Texan would make me kind of an automatic chicken expert, oil-well holder and truck driver, well, two out of three ain't bad...but I've never owned a chicken. I've known plenty of people who do and I envy them, but I will be learning all about chickens very soon.

My husband is the main animal care-taker, but I am relishing the moments I get to sit and hold a little chick in the palm of my hand. To protect myself from future attachment issues, I've not allowed myself to name them...I'm a bit too wise for that...today. However, my daughters, my GROWN daughters have named their respective chickens. My oldest daughter, Heather, has decided to give her chicken the honor of being dubbed "Pecker." Yes, she is my Biology degreed daughter from Texas A&M and she is officially the owner of a "Pecker." It's a proud parent moment...What can I say? To top it off, my youngest, Stefie, who is the Child Development Specialist major has decided to name her tiny little chick "Snookie." I suppose it is in honor of the reality show I can't seem to stomach, but have still watched a couple of times with disgusting interest. Augh! Regardless, the chickens seem to be providing our own little reality entertainment. For now, they are residing in my master bathroom garden tub with a heat lamp overhead. They've been alive for several days and are growing strong, so we must be doing something right. At least we can somewhat follow Tractor Supply's guide on "Taking Care of Your Chicks."

Still, I don't want to get ahead of myself...My adorable little four-year old niece is coming over Friday night and I can't wait to hear what she wants to name "her chicken." I will likely have a flock of Snookies, Peckers and probably a sweet little "Pillow-Pet."

Since I had gone through an especially tough time the past couple of weeks, my husband wanted to do something nice, so he got the chickens I've always wanted. He even spent a straight week outside building an elaborate chicken-tractor that is ultra-cool. Even as a Texas gal, I have never seen one of these, until now. Have I mentioned that my husband is ultra-talented in many areas? Obviously this includes chicken coup construction.

I have a little hurdle though - a bit of a hitch. I live in a neighborhood with restrictions and this has its drawbacks when you want to own chickens. My husband and I are taking a walk on the wild side here because we are blatantly breaking all the rules by having chickens. I know all the lectures about neighborhood restrictions protecting property values, blah, blah, blah, but I am in chicken-heaven. This is when the 15-year old in me re-emerges. My family has always been law-abiding, helpful, friendly neighbors, but I guess we have a horrid, dark side willing to break restrictions so we can enjoy our chickens. My guilt-complex is already in motion. I can imagine the chicken-police showing up at our door as I hold out my wrists for the cuffs and yelling, "Yes, I admit it! The smuggled chickens are out back. Where's the paddy-wagon?"

Actually, the difficult part for me with going against the rules is that we own acreage, but it is about 1.5 hours from Houston. So, we cannot leave animals out there to fend for themselves. We cannot live there full-time until my husband retires, in about two years. For now, we must be patient and hide our chickens. As a courtesy, since we are such AWESOME neighbors, we did not buy a loud rooster. It's strange, we already have major flocks of noisy birds in our backyard and in the surrounding neighbor's backyards - shrubs, trees, everywhere are birds - we all have bird feeders in our backyards and they work. For some reason, we are fairly confident that our chickens will be well-behaved and not very noticeable. However, if they are not completely unnoticeable, we've let our neighbors and our good friends around us know that we are certainly willing to bribe them with a weekly delivery of "farm-fresh" eggs laid in the suburbs. Thankfully, we are indeed friends with all of our neighbors, even the neighbor directly behind our house who resides on a separate street. We are neighborly people. I hope this will extend the welcome mat for my precious chickens, named or not.

For now, we are trying to keep our Australian Shepherd from doing anything but protect and herd the chicks. I've been pretty darn impressed by his gentle nature. Our other dog, a mixed breed, has part-Collie in her and she nearly licks the chicks to death, but she is in full-nurturing mode. Every night she lays in her bed crying and yearning to be with her "babies." Eventually, the chickens will be big enough to run around as "free-range" chickens in our backyard and to be endlessly herded by the shepherd. I hope they continue to live strong and to grow so that they can lay eggs in a few months time. I'll keep you posted.

First thing first, back to this coming weekend...the chickens must survive the four-year old visitor and her naming ritual which will surely having me rolling on the ground in hysterics.

This is too much fun. Why didn't I break the rules years ago?

#47 - Sunny Days & Great Moments

After having a ten-day struggle with my health, it feels great to re-emerge again. I'm on the beautiful side of Addison's once again and it is awesome. Sometimes, I can't believe how far down we can go in our health and how fast it can happen. Even after I've had it all these years, it can still shock me. Likewise, the reverse can occur just as rapidly; a turnaround back toward feeling great and having a wonderful day can be your gift for the new day.

Texas Bluebonnets

Long ago, I actually taught my daughters to quit saying, "I've had a bad day." No, they should not say this because it is often inaccurate. Most often, we have a bad "moment." One bad "moment" does not make the entire day necessarily bad. Nowadays, mama is having to take her own advice. Besides, I do not want to give a few bad moments more power than what it deserves.

Coping with a disease like Addison's has made me break down life from moment to moment. Since each moment can change so widely, I have learned to be glad for those wonderful mornings, for those beautiful cool nights, for those lonely, yet savored afternoons, and for those midnight book-reading stints. I especially like the balanced days when I do not feel as if I am starving for food I do not need or gagging at the sight of food. Staying aware of my current condition is critical: I can easily go into automatic-mama mode for myself when needed, but it sure feels great to have healthy moments when I can just exist and forget anything relating to the medical world.

Today is a beautiful, bright day here in Texas. My backyard is lit up by sunrays, the birds are flying around and the trees are swaying in the wind. My little corner of the world is picture-perfect for this second; I am definitely having a great moment!! Hope you are too!

#46 - Yucky is Yuk

Over the past week, I've been going through an especially rough time in life and it's taking a huge toll on my health. The toll for me means having to stay close to the bathroom because of vomiting and yes...dreaded diarrhea. My body has gone into a purging mode. It won't accept anything. This is why I purposefully keep on extra weight --- I've learned the hard way that I can lose weight faster than most anyone I know. Yet, I've never known anyone else, face-to-face, who also has Addison's. So far, I am losing approximately 1 pound per day, at least. I have extra padding on my body, but when the weight starts to consistently drop without me being able to stop it, that's when I know this disease has power. I am battling to fight back, to fight the disease within my own body so that I won't end up looking like a weak light-weight. I've been there in that place for too many years of my life; I did not like it. I am a strange woman, I actually like the extra 30 pounds because it makes me feel more present and more able to do battle with this disease. My reserves have become important to me. Seeing myself start to wither so quickly is not comforting.

For the past week, I've barely been able to eat anything and have absolutely no appetite whatsoever, another great symptom of Addison's in motion. Logically, I know I need to eat, but my body screams that it does not want food at all. Since I know the body is in Addison's-mode, I find something little and nutritious to simply give fuel to my body and force myself to swallow the calories. Still, I am sickened by any food item touching my tongue. Even fluids taste disgusting; everything seems to leave a horrible after-taste and is hard to get down. All foods in my pantry might as well be chunks of cardboard. For one week, the desire to eat is completely missing while at the same time I am vomiting and having diarrhea. This combination equals the body starting to eat itself.

Several pounds less on my FREE weight-loss plan finds me feeling weak and in a foul-mood. Handling ordinary day to day crap is not so easy when your body remains engaged to fully rebel against you. Some people get knocked off their rear by a vicious virus and they suffer intensely, yet are so glad to hit recovery mode. They get to look over their shoulder at the virus and keep walking away. We don't. Sometimes, during these Addison's moments, I miss the old me. I mourn for her. I want her to come back. My pep talk then begins...telling myself the regular things, be thankful, you've nearly died from this so you know how bad it can get, things can turn around tomorrow, hang in there. But, this time I am hitting bottom hard and my bounce-back is not as bouncy. Life is changing for me on many levels; not having the love and support I expected during this very difficult time certainly adds to my sadness and less-bouncy ability. Still, I keep going, knowing better days will be ahead ---- there just might be less of me to share with those who really love me. As long as I can make it through these bouts without lasting damage and without being forced into the hospital, then I am actually pretty darn happy. With Addison's, your joy is on a tad different level than most can understand.

Yes, I have been doubling and even tripling my meds for proper stress dosing as required for Adrenal Insufficiency / Addison's patients. But, these steps are not always a simple solution. I've had long stretches of time that find this disease rather easy to manage, then other times hit where the disease is like a snapping pitbull coming after you while you keep jumping out of reach of its jaws, but it is an exhausting and terrifying process when you discover the pitbull won't back down and you have no where safe to turn. All you can do is keep doing your best to protect yourself from further harm. So, leveling out and managing our illness, especially during rough patches is not necessarily a snap. Going through the ups and downs of this disease can be exhausting in itself. We with Addison's / Adrenal Insufficiency can often end with feeling as if we are watching our body as it is being controlled by an uninvited "foreigner" and this can be scary, depressing and humbling. Compared to so many conditions, this one definitely is unique because it loves to put our potential fragility in our face so often. I have always been fiercely independent, physically and emotionally strong and able to heal quickly, til I got Addison's. Things may have changed, but I am not necessarily worse off. I may have lost a lot of who I am when I developed this weird disease, but I also discovered more beauty in this world, more about myself and I learned to savor every good moment beyond description. So, I'd have to conclude that I've gained more than I've lost, but the struggle is ever-present.

#46 - Blog Connections

For a long time, I thoroughly enjoyed a friend's blog and she recently wrote something very sweet about our connection...Suzanna is another writer with Addison's/Adrenal Insufficiency who posts very interesting entries of great variety.

I love her blog because I never know what I'll find, it's always a surprising treat. Sometimes she writes about an experience, or she'll share photos of AWESOME fashionable items such as shoes or jewelry or jackets with fun comments; perhaps she'll put up some great home-decorating ideas. Lately, she's trying to dig into her experience with initially being diagnosed with Addison's so she can share all of the honest, raw emotions and circumstances involved. Anyone who deals with chronic illness knows this is not easy. Putting it into words is even more challenging.

Sometimes we are afraid of being ourselves about our condition. Not letting others know the truth of how deeply we are impacted is some kind of self-protection that really just ends up isolating us. I did this for too long. I think this is why it is so important to make connections with others who are dealing with this condition...person by person we see daily realities as others make their blog posts. They may be physically strong or weak, they might be emotionally drained or on top of the world, but it helps to know that we are not alone.

* * * * * * * * * * * * *

Here is Suzanna's recent post...
I've been so grateful over the last year and a half to be a part of several Addison's Disease forums and boards. Having a rare chronic illness means that I don't know anyone in real life that has Addison's. So connecting with people over the internet who do has been so valuable. Yes, I have a great doctor. Yes, I have amazing family and friends. But nothing beats getting first hand advice from someone who has already been down the path I'm on.


I've really been loving what Lana's been writing on her blog FindingLana. (Hi Lana!) She is a blessing and a resource for me. I want to also be a blogger who shares my experience with Addison's in a way that is helpful to others. Last winter was a rough time for me, and what I blogged about was my perspective during the yuck of figuring out how to live with Addison's. It was still so new to me. This winter has been so incredibly different and my experience with this disease have become more positive than before. I want to share that side of Addison's too.


I would never choose this disease. I still hate that I have it, but it doesn't make me mad like it did before. I like where I am today, and a lot of what I've learned in the past two years is because of Addison's. I'm grateful for the opportunities it has brought into my life. It's weird that I can hate something but be grateful for what it has brought to my life- but it's true.
 
You can visit Suzanna at http://www.simplysuzanna.blogspot.com/

Simply Suzanna



#45 - Good vs. Bad

When battling a chronic serious illness or multiple conditions, you learn to take the good with the bad. More than that, you learn to fully appreciate and savor every good moment. I've found that good times might be fewer and further in between these days because of health struggles that never seem to end, but when the good times do hit they are more powerful and of much higher quality. So, even if the "good" times come less often, our ability to enjoy every simple moment makes our lives filled with significance. Years ago, with a completely healthy body and no physical obstacles, I would sit outside watching the kids play or I'd even run in circles playing with the kids. I thoroughly enjoyed it. However, no matter where I am, when I am around my daughters these days, I absorb every smile, every giggle, every moment of making eye contact from my seat - I really SEE the kids, my kids who are now young adult women.

Another way to describe it for me is like this...It's almost like the start of Addison's disease was the start of putting on a new pair of eyes that magnified every simple beautiful moment. One flower became a massive bouquet. Maybe it's because we've learned to reach out and grab the good times. So often, we become isolated because of our highly personal medical battles and the relationships that actually are strong enough to endure the pressure are sweeter than sweet. After you get a whiff of a bad health scare or constantly live with scary symptoms, then you surely develop a resilient attitude and heightened ability to handle those bad times once they come creeping around.

I am so thankful to have two wonderful daughters who completely love me in spite of my own bad days. We all have bad days. But, having frequent health issues can inevitably make you feel pretty down and out. Those are the bad moments that you try to move past, but sometimes the plummeting blood pressure can't be easily controlled and you end up feeling heavy-hearted and a bit scared. Or, a LOT scared. Interestingly, I've seen so-called  "normal" people experiencing many more "bad" days than those of us with actual opposing, serious symptoms pressing upon us. Being an observer of a life and death battle is one position, but when you are the one constantly in the heat of battles for your own life it can make you battle-worn, yet also deeply impressed by the incredible gift of life. Yes, good and bad are learned to your core.

I have found it to be vastly important to allow myself to be loved by those who truly love me for who I am, whether I am having a good or bad moment. For so many people, having the realities of our body's fragility can serve to remind us of how short life really is and it often bonds us together more thoroughly. We realize that the troubles can actually happen to any one of us, no one on Earth is immune. But, sadly, others crack under the pressure. If anyone gets too detached from you because of your illness, then have pity upon them because they are ignorant to life-changing moments that otherwise "normal" people might suffer, such as heart-attacks, stroke, cancer, tragic accidents or their own little unique disease. Nobody is perfect.
I just have a label attached to my condition.

For those who are struggling, take a moment after reading to close your eyes and to thank everyone in your life who has loved and held you in their heart with unconditional love. Bask in the knowledge that you have felt the power of these people who have been a part of your past and present, savor their influence and connection to your spirit. At this moment, I think of the women in my life...my sister, my daughters and my mother who is gone from this world -- this month marks the 5-year anniversary since she flew from her body into a place with no pain, with love and where time is not determined by a ticking watch. Every moment with these beautiful women, now and always, will be cherished, until it's time for me too to fly into the Heavens and to embrace my incredible mother. I am surrounded by love in the Heavens and here on Earth --- such amazing love for me to return.


My mother, myself, my two daughters while cute "kiddos" and my sister.
Probably around 1997 - gosh!!

#44 - Heartbeat Going Awry

When you have Addison's or Adrenal Insufficiency, you can find yourself in a stressful situation that is of a physical injury and/or a highly emotional stress and find your heartbeat soaring. Unfortunately, this condition sometimes means that the heart-rate won't come down so easily on its own.

As for me, with my adrenal condition, this has been a major issue. In fact, at all times I carry a bottle of Atenolol with me because stress can cause my heart-rate to soar and extra Hydrocortisone will not even bring it down. Just this week, my rate got to 160 beats per minute and I had to take a half of a pill to get it to come down to a normal rate. After extensive cardiac testing, it was discovered that this is simply a side effect of my Addison's. Of course, Atenolol has potential adverse effects for those of us with adrenal issues because it also lowers your blood pressure, so I have to use it with extreme caution. If extra Hydrocortisone doesn't do the trick, then I must take a small dose of Atenolol. It's always a balancing act.

I've heard of a few other Addisonians who must take this beta-blocker with caution. A soaring heart-rate can be detrimental to a lot of us, especially when we have gone into a state of rest for an extended period of time, but our heart continues to beat rapidly as if we're in the middle of aerobic activity. In fact, when I was first diagnosed with Addison's in 2001, my resting heart rate was consistently just near 130 beats per minute. I thought it was "normal" for me because I'd lived that way for years. Also, as a teenager and young adult, for years I looked like I had one of those awful present-day spray on orangey tans, but those pictures were taken WAY before the days of sprayed on tans. I see those pictures and I now understand what it meant and why I craved glass upon glass of the pickle juice my mother kept in the fridge. My mother would be furious to find huge pickle jars drained of all pickle juice with all the pickles left in the jar --- juiceless. As I always said, I didn't understand why in the world restaurants didn't serve pickle-juice as one of their beverages!

I don't know how many of you have problems with your heart-rate when under stress, but it sure can be shocking to realize just how fast your heart-rate is going, yet all you are doing is sitting in the passenger seat of a truck. It makes you appreciate every special moment in your life and the desire to live as fully as possible...with a heart that is not complaining about your adrenal glands running out on you! For now, when I am too stressed and my heart-rate is taxed, at least I have a temporary solution. Since stresses, illnesses, injury, etc., in our lives will never go away, I am always doing my best to artificially keep my ticker at a nice even pitter-patter.

#43 - Lies or Authentic Life...

A particular topic has caught my attention lately. Lies. For most people, this is a topic that resonates with them on some level. We have either had foul experiences after being lied to or have been caught in an uncomfortable "white lie" situation - most likely both at one time or another. Hopefully, the experience has left us with a lasting impression that will make us a better person. Better yet, it is awesome when this impression is made at a very early age so that adulthood can be lived authentically instead of on a fabricated level.

Most of us know a habitual liar or two. The problem is...their character is severely tainted by their lies. Eventually, lies have a nasty little habit of being revealed. Sometimes lies are revealed by our own doing...if the person is simply covering up their true feelings and then an outburst has them spewing their real thoughts and ideas, then the truth has managed to finally wiggle out. Anger can have us saying ugly things, but it can also push us to finally speak truths. This is why it is great for young people to date each other for an extended period of time...so truths can be revealed as the newness wears off. Anyone can keep up false personalities for sporadic periods of time or for short bursts here and there. Interestingly, lies can be discovered by a "sloppy" liar who leaves accidentally-on-purpose clues that question whether they were taking the chicken way out to get the truth into the open. Some liars are continuing with their life of lies while thinking the people around them are fooled, but often the people who are regularly around the liar are so accustomed to the liar's tarnished character that it is no longer a surprise; those liars are especially good at lying to themselves about thinking they've gotten away with their nasty deeds.

I believe in doing our best to live authentically, and this means being honest with yourself and with others. There are liars who are too deep into this lifestyle that they can no longer decipher a truth from a lie within themselves. A consequence...lying creates a fragmented life. Little separate realities are created by each lie and all of the untruths result in their divided loyalties. Liars are loyal to no one but themselves. As universal, spiritual justice and repercussions should have it, lies will soon boomerang. Sooner or later, the liar will be burdened by the multiplying efforts required to maintain the naturally expanding feature of lies. Once started, a lie often becomes an uncontrollable beast that turns its ugly, vicious head on its creator.

However, the sad part is the deceivers are most often left in the wreckage of what began as "harmless" lies that have magnified and multiplied. The one(s) deceived will feel betrayed, manipulated and purposefully disregarded. They will be angered about the lies because it will be difficult to distinguish the start and end of the lying process. They will be angered at the one they trusted, the one who misled them into making decisions that would certainly not have been the same, if the truth had been revealed. The depth of the impact upon the deceived is almost impossible to determine. The damage can run deep. So, a person's lies can create many fractured lives --- not just their own elected fractured life supported by lies, but a chain reaction of those impacted. Liars frequently thrive on their exciting secrets, but they end up being pulled in a thousand directions because of complicated lie-maintenance and fear of exposure, hence the boomerang effect. This kind of lifestyle can be quite burdensome and cowardly.

With Addison's Disease/Adrenal Insufficiency, we must do our best to live in peaceful, positive surroundings, in spite of the every day frustrations and irritations that loved ones can cause one another. Those kinds of stresses are inevitable; we all must be patient and understanding with each other when we are faulty. That is definitely a two-way street, even though we might sometimes feel as if we're the only one putting up with the other person's "crap." Usually, it is a mutual issue, so this is where the beauty of a good relationship comes into play. Each person is lenient and forgiving of these tension filled sentences and harsh tones or when your partner walks out of the room in the middle of you talking...I could go on all day with pet peeves of mine and my friends through the years. However, the core of your support system should be loyal, protective and mindful that you are as tolerant with their irritations as they are of yours. Still, there are so many torn relationships when someone takes their own selfish frustrations too far.

The older I get and the longer I've dealt with this condition, the more aware I become of how my acceptance of other's in my life affects my health. If you have destructive personalities around you, then you probably should limit their influence upon you because adrenal gland issues do involve emotional and physical stresses having an impact on our bodies. It is not only physical stresses we should be concerned about. Emotional stresses have definite physical ramifications and that might boil down to trouble managing prompted adrenal problems due to needless stress. Please know this...just because you have a disease does not mean you are less worthy or less deserving of good relationships. So, I go on about being impacted by a life of lies...

Convincing themselves that the lies are to "protect" a loved one or to make their life "easier" are ways the liar builds a temporary barrier to actually protect themselves from exposure. A liar does not do anyone a favor by lying, especially when the lie is actually intended to make their fractured life more comfortable and acceptable for them to be able to look in the mirror.

Having one's character diminished by lies is not a trivial matter. Also, breaking a loved one's trust is an irrevocable mistake because loyalty will be broken. We all know that anything that is broken is never the same as when it was whole. What so many people fail to realize is that authentic loyalty is freely given, yet once it is lost by lies, it cannot be regained by any price. The best that can be "bought" is shallow connections that are essentially meaningless. Lies unravel the best of the best. Lies can make a mighty powerful person destroy rare, valuable relationships. Even the person that the liar thought would never abandon them can be emotionally disconnected on a permanent basis by the liar's own doing. What is there to salvage when a relationship has been built on lies?

With the growing temptations of today's highly technological world, a liar may feel more comfortable in their secret dealings that sometimes require a lie in order to continue. We have the internet, email, cell phones and all kinds of methods that can be used to temporarily hide another part of our fractured life. But, remember, there will be a price to pay. In the end, it may be much more than you can afford to release. Every separated little life created by lies will eventually converge. Playing games with the lives and trust of other people is truly no game. If you are lying to someone you supposedly love, please stop. I am speaking out about this because I am seeing it everywhere and it's becoming too common place. We should not be complacent about this topic because we are very capable of living authentically. Finding the strength to be authentic, to be a person with integrity, to be honest in your words and actions takes a truthful spirit. Sadly, not all adults grow up, some elect to remain in a pre-adolescent pretend world.

#42 - Wedding Winners

A wedding can be costly and stressful and beautiful. My oldest daughter, Heather, is engaged to be married. She met her fiance while finishing her studies in Biology at Texas A&M. As fellow engaged Aggies, they entered a wedding contest.

Engagement Day in College Station, Texas.

Our friends and family have been doing our best to support their effort to win the Ultimate Wedding Contest. However, for them to be in the running for the final choice, they must stay in the top 100 category. Recently, they were in the 23rd place, but today they are in 64th place. I am doing my best to help them stay in the top 100 running. As usual, I root for the underdog and my daughter is the prettiest underdog I've ever seen!



The final wedding dress selection with accessories has not
yet been made. It's a fun process.


An important note is...you can only vote one time. Unlike other contests where you can vote daily, this is a one time deal. I am asking all of my loyal readers and blog buddies to please, please, please take a few seconds and vote for my daughter to win this Ultimate Wedding Contest. If a few readers vote and even possibly start a new chain-reaction by encouraging their friends to vote, then maybe she can actually have a chance at winning! The contest is over very soon, the 31st of this month. So, time is running out. Every vote is extremely appreciated; I truly believe that combined efforts will make a difference.

I'll try to make it easier for you to vote...

After you click on the link below, then click "vote" through your Facebook or Email (You should have seen an engagement picture of my daughter and her fiance to appear with their entry title "God Bless Texas A&M" --- the picture is of them standing beneath a huge oak tree.) Once you click to "allow," it will have a pop-up that says, "Your vote has been counted!"

If you don't get the message about your vote being counted, then it has not yet been counted. Here is the link:

http://www.ultimateweddingcontest.com/entry/100787?=flt9k

If you voted or helped to get votes out, please give me a comment or an email at FindingLana@Yahoo.com because I want to personally thank you!!!!

Maybe we'll all get a chance to help these great kiddos win the Ultimate Wedding Contest!!!! Besides, I still believe dreams do come true...

#41 - Fast Paced Days = Slow Motion Monday

The past several days have been nonstop for our family. Last Thursday, my oldest daughter came into town and we three girls (me and my two daughters) went wedding dress shopping since my oldest is engaged. It was an exciting, long day.


My oldest, Heather, in one of the wedding dresses.
My problem as Mother-of-the-Bride is...I think she is
beautiful in every one of them!


The following day, Friday, we had lunch with my husband in downtown Houston at a nice Thai restaurant. My previous blog has the photos of that fun outing. After lunch, I went to the Dr. with my oldest to check for possible cracked ribs she suspected, yes, they were cracked/broken. It was stressful to see the Dr. press on her ribs and it cause her to yell out in pain with tears to follow. She was suffering during the entire visit, but she remained determined to continue onward with our activities. Gee...I wonder where she got that determined, headstrong attitude?

That late afternoon, Heather (my oldest) and I dined together at Classic Cafe in the Kemah area --- a waterfront community where you can find mega-yachts or one-person sailing vessels. Such an interesting place. Her and I shared a delicious seafood platter since she was heading back to her little town near Fort Worth that evening. The small town she currently lives in is far away from all the fresh, incredible seafood that she loves so much. She savored her clam chowder, the goat cheese and tomato bruschetta and our main shared dish of crab cakes, almond fried shrimp, boiled shrimp, butterflied fried shrimp and the BEST honey-mustard sauce ever invented. It was indulgent. We had to bring home THREE boxes of leftovers. Meanwhile, my youngest had left for Mardis-Gras weekend in Louisiana. Did I mention that my family is always on-the-go????

Heather on the ranch, from City-Girl to Country-Girl, she can handle both worlds.

After dinner, I filled my daughter's Dodge Durango with gas, then, at home I helped her bring all of her belongings downstairs to her vehicle and load Tux, her Australian Shepherd (a Blue-Merle) into the passenger seat. As she was leaving, my in-laws drove up for their visit in town. They had called to see if we had room at the "inn" and we knew our daughters would both be gone by Friday afternoon, so come-on-down!!! I rushed around changing more linens and I ushered the mom-in-law and dad-in-law into their room upstairs for the weekend. I've noticed that the kicker with having a large house is having constant company, which is fine with me.



Tux trying to "herd" Heather. He is truly her best-friend. Tux
travels with Heather and WILL defend her fiercely. Of course,
she's capable of doing some protecting herself...very skilled young lady.
Whoever said dog is "man's" best-friend?

 Luckily, I am friends with my mother-in-law. I've known her since I was a child, so she is truly "family" to me in every sense. The next day, Saturday, my husband and father-in-law went to the "Fishing Show" in Houston's downtown area while my mother-in-law and I ran her errands together. The last errand included buying T-Bone steaks for dinner. My husband had just brought home his latest toy, a huge BBQ pit. Did I mention that this pit was LARGE???? Bad part of this day was...the guys didn't call, they didn't remember the women-folk waiting back home as they enjoyed their man-day in a world of all-things-fishing-related. You would think they've both been married long enough to know that this was a definite no-no.

The Big Bad BBQ Machine

My downstairs living room - yes, we live in Texas.



My upstairs gameroom, gathering room...with a PS3 and a poker table.
Young and old can find a fun game to play here.

 Boy, as the long day faded into night, my mother-in-law slowly grew fangs and long claws. Both grew sharper as the time ticked by. The man-victims were unaware that a wild animal was wearing my mother-in-law's skin and as the unsuspecting guys showed up near 9pm, all excited about their purchases, I knew she was about to pounce. Actually, I found it all to be rather humorous, but my mother-in-law was not to be humored...her husband and son walked through the back-door and she proceeded to launch into a rampage, complete with sailor's language. This near 70-year old woman became a entity to be feared.

No fangs or claws on this day.

Fortunately, we all knew this was her way of saying, "I love you darling and was so very worried about your well being after too much time had passed without hearing from you." No, instead, it came out, "You old S.O.B., not even one F&%$ing phone call to let me know how your worthless A$$ was doing!"

Okayyyyyy. My mother-in-law is educated with a Master's Degree, a former Principal in Houston, working for the school district for over 30 years, but she doesn't take ANY bull from her husband or from her kids (which includes three sons). She expects top consideration or ELSE. Saturday night, we got to hear the "else." Yes, we still had our T-Bone steak dinner past 9pm. Augh! My husband and I NEVER eat a meal this late, but you can bet we did on this night. Mother-in-law ruled the roost. Maybe this wasn't the best way for an Addisonian to spend a Saturday night. Ha Ha.

Side-note: The reason I don't watch soap operas is because my LIFE is a soap opera!!

Sunday, all day, my husband and father-in-law finished up the remaining woodwork needed in our house since it had been destroyed and renovated after Hurricane Ike. The formal dining desperately lacked portions of crown molding, chair railing and baseboards. The guys replaced it all. The curved stairway needed lots of woodwork as well and they worked all day, tirelessly, to put it back together, perfectly. As they worked, they kept the doors in the house opened, both front and back. The house became very cold, the house stayed in the 60's and I do not do well in cold weather. Yes, I am an authentic Texan and this is BONE-CHILLING-COLD temperature to me. Okay, I can feel you guys from up North or from Europe rolling your eyes. We do have a fierce wind chill factor with humidity and that can feel like a bath of ice-cold water, not pleasant.

No matter what I did, I could not get warm. Living close to the coastline, strong winds blow cold air continuously through the house and I felt miserable. I bundled up, but it didn't help. I wouldn't dare say anything because the guys were moving so fast in and out of the house with large pieces of wood to the machinery stationed outside each door for another cut. I knew it wasn't practical to ask for the doors to stay shut and they were working hard which meant they were sweating. Plus, I was thankful my woodwork was finally being finished. So, I spent the day in a state of shivering. I made lunch and we four took time to sit at the table and eat with the doors closed, but it ended too soon, the guys were eager to get back on track with the doors wide open again. Truthfully, I think my husband kept finding a new area that needed tweaking because he was also trying to protect his dad from having to be alone in the car for too long with his mom. Maybe she wasn't quite finished with her rant from the night before.

It's always humorous to me because my mother-in-law is so loud and boistrous and bossy (I mean this lovingly), yet my husband married me...a woman who has great difficulty raising her voice. My kids tease me about how I never yelled, but I surely kept them in line with a "mad-momma-expression." Saturday night, after my mother-in-law yelled and cussed out her husband, I was so proud of my husband when he said, "Mother, you could communicate more effectively if you just would state that you were worried and the cell phone being turned off made you extremely frustrated. Instead, you just wasted a lot of negative energy and accomplished nothing."

So, now it's Monday and all of the above has led to this day finding me completely tuckered. My body feels like jello, even with extra meds. I am just worn out. The last couple of days found me unable to sleep well either because I kept texting with my Mardi-Gras daughter through the night, as if this would magically protect her from creepers. A mother's sense of duty never ends. If she weren't 20, I'd have forbade her from going. I made my feelings known about it, but she and a pile of friends had their plans cemented. Thankfully, she came back home late Sunday evening intact with two large bags full of Mardi Gras beads that we weighed in at over 11 pounds. Proudly, she declared, I am not a flasher, but people sure do seem to like my smiling face!! She cracks us all up with her wit.

She told us that she NEVER wanted to go back for another Mardi-Gras because the crowd nearly crushed her to death, it was truly so stifling and jam-packed that she had trouble breathing. She is so tiny that the crowd engulfed her and even her face was pushed into the backs of the people in front of her. She had been terrified. All the people they'd gone with had been separated and they couldn't find each other, so they immediately exited the crowds and left the scene. She said that it is something she never wants to be a part of again. Music to my over-protective Mother's Ears! At least she's 20 years old and has had the experience one time. I am GRATEFUL that she found it to be an unpleasant experience because we live close enough to know all the ugly truths and dangers of Mardi-Gras in New Orleans. At least she has a momento of 11 pounds of shiney beads!

My youngest, Stefie, with half the
Mardis Gras beads on.

So, today I will be chilling. My schedule is blocked for NOTHING. My body needs down-time and I am listening to its silent, yet powerful signals. However, I am seriously glad to have spent the past few days in a whirlwind of activities. Everyone is gone today. My in-laws left early this morning, my husband went to work, my youngest went to work, my oldest went back to her small town on Friday evening and I am here resting with the dogs. At least everyone is gone today so I can re-charge and get leveled out with more double dosing. Tomorrow, I bet I'll be as good as new!!!