# 149 LIVING MOMENT-BY-MOMENT

 I now have a new computer and am thrilled because my others had given me headaches when trying to write and post.

Things are changing in this part of my teeny world since I've finally purchased and am using my first MacBook Pro. I'm now on a steep learning curve and often veer off path as I try to figure out this new existence sans a PC.

As for living with Addison's, this year we've jumped back into traveling with an effort far bigger than a splash. I'll be sharing how we've experienced beautiful travels as Addison's is a concern along the way.

Nana & Pappy on another cruise to the Western Caribbean this summer.

No matter, for 2022, I've enjoyed beautiful days of immense adventure and other bed-ridden days where I'm content to binge some series on Netflix or Hulu. On the difficult days, I struggle, but I constantly make peace with my day-to-day physical limitation.

Adaptation is key to living a great life with Addison's or with any physical condition that demands your attention, whether it be sudden or a snowball sort of attention-grabbing health issues.

The days when there are only slight taps on the shoulder, "Excuse me, could you spare me a brief moment so we can avoid the brick wall ahead," are the best kinds. On those days, you're in tune with your body, and no sneaky-fox Addison's symptoms are pouncing upon you.

Here I am at the start of summer at 54. No makeup.

Just me with my art supplies.

Traveling can be a challenging time when you have Addison's, but I don't let it hold me back, until it actually pulls me down and my moment of choice has altered to a moment of adapting to what I MUST do to get through the worst of it.

I take decent care of myself, and I don't hold back seizing the day. And yes, that means confronting my health needs, being prepared, listening to my body, and knowing when to stop seizing and to instead wave the little white flag.

On the white flag days, I make a hasty retreat to climb into bed and allow my body to do the dance of calming rest.

I've lived with Addison's a long time and have had a rather joyful existence despite very critical times... a broken neck and other multiple surgeries that were about as high on a surgical-risk scale as you can get for a normal, healthy person, but I got through them with Addison's. 

There have been illnesses and heart-wrenching deaths of people I most loved, and I figured out how to get through it all... with Addison's pouncing on my devastated state of existence. Staying on top of my blood pressure, heart rate, medicine, and it can be a juggling act. Times of loss can make it extremely difficult to manage Addison's. 

We all walked to a special spot in Texas to spread my father's ashes. With my mother's.

That's Coco, his oldest great-grandchild walking in front of me.

In 2020, I lost my father, and I will admit that the year that followed his death put a strain upon my body as never before. His passing caused extreme stress, which made managing Addison's a warring time for my body.

There were many months when I had trouble walking... forget stairs... and I lived with nausea. I did take stress doses, but there is no easy way around the ups and downs that come with profound loss. It was an Addison's nightmare that I did my best to handle without adding stress upon others, but it was probably the most dangerous phase for me, other than my surgeries.

Dad is now with Mom who died in 2006 at 57-years-old due to breast cancer. Dad was 74, and I had selfishly wanted more time with him. He went to Italy shortly before he passed, spending a good deal of time there. I'm glad he did so much in life, but he's now moved to a new address in Heaven, again with so many people he loved. 

I'll write more about his passing later because my long-time readers know of my closeness with my father. I have been blessed.

My mom and dad when we lived in Scotland. I took this picture of them.

But the good days give me reason to savor each second of treasured vibrancy, whether it be from a sedentary position or with me dancing in celebration. I go with what I'm given. 

I barter with my body. I know, for the most part, about the precarious give-and-take relationship I share within it. If I don't listen to my body's needs as it carries a passenger I must address, then that passenger, Addison's, will rule the day... and perhaps more.

To get to my next best day, I've got to listen to the passenger inside. I have to stay on top of things to keep it quiet and satisfied. Sometimes it makes demands upon me that I cannot overrule, and this is when adapting is the key to living a great life. I refuse to hand over more than is absolutely necessary to this passenger.

That means I don't let Addison's own me. I refuse to let it hold my life hostage. When strong, energetic days are presented, I don't question it. On those days, I get into the highest gear allowed and tackle as much as I can for as long as I can.

Pappy with our two oldest grandsons & Nyms.

With Addison's, you never know how the next day might go, so when the good days come, you make it work for you. Those are often catch-up days. Those are the days when I am enthusiastic yet a microscopic part of me yearns for the pre-Addison days when I hadn't known high gear would become a rarity.

These days, I have leveled-out, for the most part. I do not have many high-gear days nor too many days of feeling dissolved, but both kinds of days do make their respective appearances here and there. 

The "walking through mud" sensation I began having when Addison's decided I was a prime vehicle for it to hitch a lifelong ride in... that sensation is still with me, more or less. Depending on the day, there is either thick mud I must press and battle to wade through with each step or there are energetic days when it's easier to move, but the mud then can fall upon me from the Heavens, threatening to press me to the ground. 

Having Addison's is indescribable, but when my blood pressure and electrolytes go out of whack, I can feel like a rag doll surrounded by mud. That's the best way I can describe it.

Sometimes my symptoms are in check with treatment and are barely noticeable, but I've never had a day when the disease is completely absent. And yes, I have to turn down more invitations than I'd like. I have to ration my energy. For me, it is more than a precious commodity.

If I want to show true love for my family, I've got to be real with my limitations yet not use the disease to bail out of life. The stressful things do take a toll, that's the entire nature of Addison's, yet I have to decide how much of a toll I can manage with medication.

On a recent cruise in May. At the "no choice" phase. I had to rest.

Sometimes I appear normal looking on the outside, and then I'll have a day when strangers reach out to ask if I'm okay or their eyes hesitate upon me for too long as their expressions reveal concern. Boy, I don't like those days.

My grown daughters understand that my body requires more rest than it once did, and they're totally onboard with normalizing my normal, and I love their own adaptability. I have daughters who are now amazing women, wonderful mothers, and we all treasure one another.

With my oldest daughter, Heather. 

I can't put into words what she means to my heart and soul.

We can never make it through photos without cracking up.

Regardless of what each day holds, I keep wading through the mud on the days when it is all but a brick wall, and I must battle to get to the bathroom. And like I said earlier, sometimes the mud moves from in front of me, changing consistency and coming at me from a new direction... falling upon me, like an invisible light rain that isn't actually light. It is pressing. It's a strange resistance when our body is affected by the worst of Addison's.

And as I age, now in my fabulous fifties, I find some things are harder because of Addison's, but the strange thing is that a lot of things are easier. Living with this passenger for over two decades has taught me valuable lessons. 

Me with my youngest son-in-law, Brice this summer.

This specific, unique disease has taught me specific, unique life-saving attitudes and behaviors. Those translate to prompt me to make the best actions for surviving the mud-slinging disease I've come to study, respect, and learn.

After all, my attitude is the best shovel one can own against this disease. Years and years ago, I thought Finding Lana would be easier after Addison's hailed me as its permanent ride when I was 33-years-old, but I've learned that finding my adaptable self is a lifelong journey. Addison's means various phases of life will require additional adapting to the disease... in many ways. I'll age into new issues, but Addison's always complicates matters, and I do not ignore that fact.

If you have Addison's or any other disease or condition that requires vigilant attention, I hope you never stop figuring out how to help yourself make it through days when the mud is packed around you.

This is a recent 24-hour time constraint charcoal

of my oldest daughter, from when she was a kid.

Take notice of your body and take NOTES. Figure out what makes days better and what makes them worse. Monitor your vitals, Juggle those medications to give yourself the best Addison's ever-changing self-treatment that you can muster.

I want others to know there are treasured lessons that come from great struggles, lessons healthy people are often ignorant in knowing. That's not a bad thing. But, living with such a struggle can provide rare Masterclass lessons in countless ways, giving you "new" eyes for seeing everything touched by life. 

My oldest grandchild, Coco.

My youngest daughter, Stefie, with her beautiful family.

My goofy husband to whom I've been married a LONG time.

We not killed each other, and the lack of bloodshed has been worth it!

If you can figure it out, tell me the good lessons - the surprising lessons - and the lessons you might not have learned without the boost from whatever it is that requires you to adapt.

Keep your inner shovel ready, but know when to set it aside and tune-out the world so you can endure the worst, whether the worst be minutes long or longer. How do you adapt and make life matter during those moments?

What matters to you? How do you provide self-care and self-nurturing.

For me, I take actions to make life worth living. I savor the small stuff for as long as possible and spit out the bitter as fast as I can. I make downtimes work for me, either through that tv binging, through writing, or through art. During those times, my passenger must stay seated and well-mannered because I'm still in charge.

Treating my in-laws to another late lunch.

How do you hand peace to your inner-self in spite of a raucous passenger? What is your distraction?

Live well, MOMENT-BY-MOMENT, no matter your speed!

***

PS: Leave a comment. I'll have to moderate it, but it will then post to the comments section for others to see and for me to respond to.

# 148 - I'm Still Here!

It's been around three years since I last posted on this blog. The last post I made was during a very difficult time that made managing Addison's Disease a great challenge. The GREAT news is that I had surgery in 2015, and everything is about as perfect as it can get. Nothing fell, collapsed, prolapsed or otherwise hit the wall...or the floor. My surgeon put me into ICU after surgery as a precaution so my vitals would be on constant display. It worked. I'm here, and I'm doing fabulous as a happy uterusless woman.

Another celebration I've enjoyed this year is when I was blessed to turn 50 years old! Oh wow! I still feel like a young, young woman, but I'm now further from young and closer to old, according to the numbers. Lol.

The reason this birthday was especially meaningful to me is because...at the age of 33 I coded due to undiagnosed Addison's. After that, I had a solid ten year run of extremely serious health issues that required one major surgery after another, and life was brutal as it took being sliced, diced, glued, and screwed (the titanium version) to keep me going.

In so many aspects, I experienced life in a sort of suspended state of existence...in limbo. Today I'm technically in better health and am doing better than I was in my 30's.

In fact, we've built our country home and have been SLOWLY working to finish the interior. That's one area where I've not progressed much, I'm still slow. Even so, what I lack in speed, I make up for in persistence and duration. I don't go as fast as others, but I often outlast them threefold. That gives me reason to smirk, a little.

The last few weeks I've been steadily sheetrocking, taping, floating, texturing and now painting one of the rooms upstairs.

It's given me tremendous satisfaction to accomplish things that are tangible and enjoyable on a daily basis. This room will serve as my official writing room.

Once upon a time, Addison's Disease made Finding Lana a challenge for me.

For years I didn't know if I could come out from beneath a disease that often threatened to smother me, but I've been doing GREAT for the last couple of years, and life is better than it was in my 30's!

Life is beautiful.

Go CONQUER!

#147 - Addison's Crisis Scare

This Thanksgiving I was making the trip into Houston by myself since my husband was having to work. The excitement over the pending trip to my Uncle and Aunt's new home in a beautiful part of Houston was thrilling because it was also their home-warming party.

The trip takes over one hour, one way, mostly down Highway 59. It's actually a pleasant trip.

However, the past few months have been very challenging due to massive amounts of blood in my urine and lots of testing to figure out what is causing the bleeding. Since my father had bladder cancer, frankly, I was scared of it being cancer. I think this fear or thought in the back of the mind is natural for any child of a parent who has battled cancer or died from cancer that is found to be "genetic."

So, I have gone through testing during the past few weeks that range from ultrasounds, bloodwork, a CTscan with and without contrast, along with the procedure of bladder scoping.

A diagnosis I got about a year ago, and that I had hoped would somehow find "healing," was that my uterus has become so incredibly enlarged that it is literally "smothering" my bladder and grating against it, injuring it. Additionally, it is causing pressure against my lower spine, which is one of the most painful elements to this problem. Then, on some days, I suddenly have serious vaginal bleeding with huge clots that are very painful to pass because the uterus is not doing well; this is not a "normal" menstrual cycle, but further sign of things going wrong.

I have been on Depo-Provera injection for quite some time, which has kept the cycles away and that is good because I am in extreme agony with enough blood loss to create anemia during a "normal" cycle. Endometriosis has also been a life-long condition that causes tremendous suffering and has aggravated this situation.

Needless to say, between the bladder reacting as if sandpaper is rubbing against it, the ureters being stretched and contorted outward as if they are rubber bands pulled to their limits and the other internal pressure creating abnormal consequences, I am in considerable pain, especially after I am on my feet too much or moving around too much.

In spite of the pain, I still traveled a few weeks ago to be with my youngest daughter, Stefanie, as she was inducted into an Honor Society for her Master's Degree that she's almost completed. Even after that trip, my situation went further downhill and my urine became full of blood, all day, every day.

So, in an attempt to get in control of the pain, lately, I have been "resting" as much as possible, and this is also what the surgeon ordered because a horrible nightmare can occur to make this bad situation worse. My doctor said my bladder is actually in danger of prolapsing through the vagina from the intense pressure of the uterus bearing down upon it.

Whaaaaa?????

Well, I am 46 years old and don't relish the prospect of "Hey, my bladder is coming out of my vagina" kind of moment. So, the Urologist sent me directly to a highly recommended OB/GYN who confirmed that my uterus is now equal to the size of a four month pregnancy with it being full of tumors, a minimum of three tumors, believed to be fibroid. The tumors are very large...one on the left side of my uterus is so large that it can be felt simply by pressing upon my abdomen. My entire uterus can be felt with bare hands as it explores the abdominal swelling. As I lie down, you can see the swollen uterus and the lopsided swelling on the left...but this is not like the days when I was pregnant with my babies...this is mentally and emotionally disturbing as well as physically painful.

For those who don't know about this stuff, a woman can often have their uterus removed during surgery, through the vagina, to cause less bodily damage. However, I was told that the uterus is so large that this kind of surgery is no longer possible.

That is pretty serious for me because I already went through a supposed simplistic gallbladder removal in 2009 that led to massive complications...my 10th rib needed to then be removed to surgically access a large mass of scar tissue that was the size of a softball due to the gallbladder removal. Then, we soon realized that the abdominal wall did not stay surgically closed from the rib removal, so a third surgery was needed to keep my guts inside my abdominal cavity.

St. Luke's Episcopal Hospital in Houston performed a 10x16 spine-tissue transplant because the abdominal wall was not healing/closing after the rib removal incision and mass removal that left a quite large incision stapled shut, and it didn't work. Surgeons suspected steroid treatment for Addison's as the source that was hindering my surgical healing process.

But, what happens when an Addison's patient needs surgery? They need MORE steroids for stress dosing, for survival. It's a vicious cycle. These three surgeries were within about three months of each other and every subsequent surgery required that the surgeons go BACK through the SAME surgical opening, each time making it larger, more painful, and even more traumatic.

I have had several major surgeries and am so grateful to have SURVIVED each one of them, but the Addison's makes things much more dangerous. That is the harsh truth is that our Addison's condition increases the chance of complications.

After all the surgeries I have needed and that have served to keep me alive, I have found the surgery itself is not so scary, but the COMPLICATIONS can be terrifying. It is especially critical to have a surgeon who provides responsible, excellent post-operative care to make sure their surgical effort are a true success.

Now...all the backstory is to lead back up to Thanksgiving Day.

Since I have been facing major issues with pain, infection, and inflammation, I have been forced to do more stress-dosing over the past few months. My blood pressure has been extremely erratic. One day it will soar and the next day it will bottom out. Keeping it stable has been a Fairy Tale for quite a long while because of the stress, swelling and infection the enlarged uterus has caused.

So, on the Thanksgiving morning, I kissed my husband goodbye as he left for work, then I checked my blood pressure again, it was on the high end, about 140/98, so I continued to get ready for my Thanksgiving day with family in Houston...about 90 miles from our home. Packing my three pies with whipped topping, I also decided to bring along my wrist-blood-pressure cuff to monitor my blood pressure for the day, so I could take any needed medicine to keep things under control. I wasn't feeling just "right," but that has been going on for quite some time; not feeling "right" is my normal for the time being, so I just kept going on auto-pilot and soon got in the organized car to leave our home in the forest for downtown Houston.

Within ten minutes of being on the road, I began to feel severe dips in my blood pressure. I put the cuff on my wrist and began checking my blood pressure and was shocked to see it sink from 140/98 to 86/52 in less than five minutes time. I had ALREADY taken a stress dose, but I pulled out my medicine container that I always keep with me and began my routine of taking 20-30 mg of Hydrocortisone, but this time, I decided to take 50 mg because the dip had been so rapid and severe. Then, my experience became one of the scariest that I have had since being diagnosed with Addison's in 2001...I developed extreme brain-fog in the few minutes this all happened, while driving down Highway 59 toward Houston.

The rest of the events are shrouded in a thick mental fog that comes with a person's blood pressure sinking so low that oxygen to the brain is seriously reduced.

I either called or texted my husband with the message of, "Call me" as I was searching for a place to pull over to the right. Obsessively, I kept thinking, "Pull over to the right...stay right." I knew I needed to immediately let him know I was in trouble, even though Sgt. Dave was over an hour away, at work already. Turning around wasn't an option...I didn't have the thinking-power to even move out of the right lane. My husband called, I had him on speaker phone and tried to tell him that I was in trouble and trying to pull off the road, to the right.

Since I was on the highway through a rural area, I was terrified at being stuck somewhere "off the map" as I physically plummeted. My husband's voice was panicked, yet stern as he ordered me to, "Turn around! You are having a crisis and are slurring!"

All I could think was, "I can't even FIGURE OUT HOW to turn around...I will stay on this edge, and go slow until I can PULL OVER AND STOP in a SAFE SPOT."

With the little bit of brain power I had left, I felt the panic mounting inside of me. There was nowhere to pull off the road safely. Somehow, I KNEW to NOT STOP in the break-down lane; I wasn't even sure I would stay in the car or not stumble as things deteriorated as I lacked coherent ability to make decisions that were need to prevent me from being ran over by a big rig.

Of course, I continued to hit the button on my blood pressure cuff, which while on the phone with Sgt. Dave gave the next reading of 77/42, and I realized the search to find a safe zone in the middle of NOTHING was urgent. All of this happened within about a five minute time-frame, but it felt like an ETERNITY. I kept swallowing more HC pills as stress dosing and knew I was past the point of being able to self-inject, I was too weak and too far from being mentally aware enough to prepare and give an injection.

I then recall my car hitting the hard ridges that are built into road and realized I had been losing consciousness, and that's when I spotted a big sign in the sky that said, "Love's Truck Stop." The hard ridges jerked me out of my lack of consciousness...yes, the ridges work, and I felt as so relieved that a safe place was within sight! However, still on Highway 59, I prepared to turn right, off the highway as I waged a battle to keep looking in my mirrors to make sure no one was driving any where around me. I HAD to get off the road; I could NOT hurt anyone because of the sudden onset of an Addison's crisis. If I did cause someone to be hurt as I became sicker, I would not be able to live with myself.

How could this happen? How come there weren't more warning signs that could have prevented such an extremely rapid deterioration in my vitals? How come this had to happen while driving down a isolated stretch of Highway 59 as I was alone?

At this point, I was FIGHTING to stay conscious and had literally gobbled a HAND-FULL of steroids, which by the end of the day would total over 200 mg of Hydrocortisone, the most I have ever had to take in one day, and still, my blood pressure kept sinking.

With a bobbling head and eyes that were trying to refuse to stay open and taking great effort to see, I managed to pull into the truck stop parking lot. I pulled against the nearest curb, turned off the car (I think) as the phone lay on the console with the speaker phone still relaying the voice of my husband. I finally spoke, trying to tell him with a thick, uncontrollable tongue, that I was parked at Love's truck stop and was going to lie my head back and just rest a while.

I was wise enough to know I needed to obey my body.

Sgt. Dave was furious, but I did not have the ability to be concerned about his own panic as he hung up on me for being so angry that I wasn't doing what he wanted me to do. Frankly, his tantrum was not my concern, I had bigger things to worry about. With him off the phone, I had one less problem and could focus on myself...trying to figure this out.

The last thing I remember at that time was reaching to hit my door locks, not realizing the doors were already locked, I looked up to see the huge "Love's Truck Stop" sign directly over my front windshield and I actually giggled weakly while praying, "God, please don't let this be my last sight."

And I literally fell unconscious.

The shocking part to this was that once I regained consciousness, over 45 minutes had passed. I could not believe it. I don't even remember really if the car was turned off or still running. Being able to park was good enough for me.

I took my blood pressure and it was now 90/58. Better. But, best of all, I WOKE UP. I was ALIVE!

Taking MORE Hydrocortisone, I decided that my body must have been processing all the pills I had swallowed as I lie there unconscious, and they were finally working their way through my system. I considered going back home, but as my blood pressure continued to rise, I knew that I would return home to simply find myself with decent blood pressure as the worst had passed, and my determination to move forward was full of stubbornness.

My blood pressure went to about 110/78 and it held for about twenty minutes, so I decided to go on with my life. I also knew that after all the massive doses of Hydrocortisone had been taken, that I might have some high blood pressure, but that never happened.

Of course, everyone began eating Thanksgiving dinner because my little truck stop detour and my slowed pace added nearly two hours to my travel time. That was depressing to me because things went so wrong, then I began to realize that things actually went right...God helped me to be safe, for others to be safe, and for me to make it to a place that was not too scary to sit in my car alone while extremely vulnerable. I never expected to lose consciousness.

The drive within me to get to the Thanksgiving gathering was powerful. I was going to see both of my daughters, my son-in-law, and my grand-daughter among all the other family members I love so dearly.

My Uncle Billy, daughter Heather and grand-daughter, Coraline.
My sister is in the background looking like a super model!

Then, I was getting to see my Aunt and Uncle and their lovely new home, and my cousins I hadn't seen in well over ten years.

My beautiful sister, Robin, and my cousin, David.
When we are together, I still feel as if we are kids!

The first few miles back on the road were "test" miles, to make sure I was fully alert and capable of driving safely. I felt a life-time better, but I knew things were not right in my body, and I suspected the wild fluctuations to be directly related to my condition causing too much stress upon my body.

Stefie is giving me a sweet smile and my niece Shaye is
growing up too fast!

Also, I contemplated the reasoning for my meds taken in large doses for not kicking in as fast to get my blood pressure to an acceptable "low" range was explored. Obviously, my body was not absorbing the meds as it should have. That concerned me. One way to approach this problem, I believe, is to make sure I do not find myself without a ready-snack to take with the medications to help absorption. Usually, I have peanut butter crackers with me, but this time, I was out of luck and even though I was SO CLOSE to the truck stop shop, I was far too weak to try going inside. From now on, I will at least make myself a snack pack of Ritz Crackers with peanut butter before I get on the road.

I felt weak for the rest of the day, but everything was okay, other than my pride being wounded.

Determined to keep going, I had a wonderful time with my family, especially with my uncle who was justly proud to show off his AMAZING shop where he does woodworking projects above and beyond the norm.

I had so much fun. The two of us spent about an hour in his shop as I got the grand tour.

Since I took Shop in school, I really loved this experience.

My uncle is such an amazing man; it is wonderful to see him living a life of excellence and luxury.

My Uncle Billy's CNC machine - remarkable!

The downstairs part of his woodshop - tool zone.

He's also a perfectionist, which is evident as you see his two-story shop setup.

So, I got to spend my Thanksgiving going from being unconscious at a truck-stop to a family home that is worth well over a million dollars. Then I was blessed to get home safe after the festivities. It was quite a memorable day.

The day after Thanksgiving, the reality of the previous day hit me hard. I realized that my condition is more precarious than I had wanted to admit. Yes, I know it isn't good because of the level of pain and bleeding from a couple of places in my body that this causes, but I am accustomed to moving past the pains in life as much as possible or be controlled by it.

Still, I acknowledged that my health, especially the Addison's, is not stable. At least, not for now, especially due to the excessive pain my body is processing. After I have the surgery and get the uterus removed, I believe things will become more manageable. Until then, I am going to try to avoid lengthy car trips. But, I savor the time I had with family, especially with my Aunt Sheila.

Aunt Sheila...a woman who is easy to love and who loves her
family so easily.

On December 4th, I will have a final test conducted to determine a couple of other things for the surgeon to develop a surgical strategy. On that same day, we meet with the surgeon to discuss the details and to learn my surgery date; she already told me that it would go fast after the Thanksgiving holidays.

I am thankful that God put me under a sign of "Love" during one of the most difficult and scary times of my life with Addison's. I just never thought the love would be associated with a truck-stop in Texas. I will never see that truck-stop in the same way again...it has earned a special place in my heart.

# 145 - Nature is Good

For about nine months we've been living in the country. The lifestyle is good for me. Well, with the exception of the cold weather which has been EXTREMELY difficult on my body, but coldness seems to be something we're all enduring to some extent or another. But, the country environment has been healing to me in many ways.

When I am having an "off" day, the country life helps me to better enjoy my surroundings than I had been able to do in the city. I needed a slower pace. Well, maybe not a "slower" pace, but a different kind of pace.

Life in the country is not without its difficulties and challenges, but the trade-off for the large dose of peace and to be in nature from the time I wake up until I go to sleep is exactly what I need. Listening to the birds in the morning and the crickets at night makes me smile, well, mostly.

Ever since I began my battles with Addison's, one of the ways I have been affected is that I felt the need for more space, and I needed more time in nature...I needed more time alone, yet I am NOT lonely. I wanted to be free of feeling as if I am display or some kind of guinea pig. I needed to step outside of my house and sit in the middle of nature, without a solicitor coming up to sell me something and without having to listen to the neighbor's dogs bark at me as I try to sit peacefully in my backyard and to get through a night without hearing the party next door.

External noises are fine, but getting a bit of space between me and that noise seemed to be imperative. I began to go all day without any sound, just the sound of life itself. Things changed for me.

Of course, we still have many fun times with family and friends, but on a day-to-day basis, I enjoy being in the forest.

Other times, I LOVE being with my first grand-baby...a precious baby girl named Coraline. She fills my heart with joy, as if I was a truck running on empty and she gives me long-lasting fuel each time I see her.

However, living in the forest, on a beginning farm means that each day offers something new. More than that, each day offers a bit of excitement and exploration. And I get to be around baby animals...that is awesome.

I guess if I had to explain how it feels to live in the country, I would have to say that being on this acreage puts me farther away from man-made life and closer to Heaven...kind of an in-between location that suits me, perfectly.

Most people living with a serious illness would rather live closer to city amenities, but I changed gears and went from being a full-blown city gal to running the other direction. Fortunately, my husband was ready to do the same.

Now, when he is home, he says it feels as if he is already on vacation. There is a longer commute, but the time home is savored.

Life is beautiful. Oh yes, there are struggles, more than I can say, but the overall take away is that life is incredible, always full of exciting twists and turns, and the glorious moments smother the bad. That's the bottom line.

And I leave you with this thought...

# 141 - The Country Agrees with Me!

Lately, the difficulty of aching joints and bone pain seems to be my main complaint. Some days it's not so bad, but others pound my body with deep aches that restrict my movements on a remarkable level. Thankfully, I have a team of physicians who understand the criss-cross-complications I have from multiple conditions, so I was prepared with medications to keep pain at a minimum and to help muscles relax and I have been helped by a medication that promotes SLEEP.

Lately, I've needed to stay on a medication regiment so that I can have days that demonstrate I'm at my best. Sometimes the medication helps to keep us on track, as best as possible.

This is important to me, to stay on track, because my husband and I finally made a big change. We sold our house in the Greater Houston area and have moved to our acreage in Livingston, Texas...a rural community a couple of hours outside of Houston.

Leaving our city neighborhood for the last time, three weeks ago.

We've owned our land since our daughters were younger, but could never move there because I was more concerned with staying close to city life, but I'm not sure that was the right path. However, my daughters have turned out to be responsible, intelligent, degreed, loving young women, so something we did was right FOR THEM. The balance of city life and country life worked for all of us.

However, now it's just me and Sgt. Dave --- so we figured it's time to move to the country because we don't have to worry about school districts or the neighborhood pool or biking trails; we are just worrying about the two of us building our new life in the country so that we can enjoy being grand-parents who have wide open spaces for the kids to enjoy!

But, the changes have been difficult. The move was very stressful, both emotionally and physically. Also, the schedule changes we are experiencing add more stress because we had grown rather inflexible, but the distance into Houston from our rural acreage is significant, so this changes our orderly schedule.

I'm in the sun more often and on those days, I must remember to be careful because HC can make your skin more sensitive and prone to burn.

And another issue with moving to the country can be the complication that comes with simply becoming distracted by all the fun I am having and forgetting to take a dose of my HC or to increase my HC to meet the higher level of physical output.

A good thing is that the week we were leaving the Houston area, there was a nasty, fast-spreading stomach bug making its rounds about the Houston area and it created projectile vomiting and sickness that lasted about three days. It was passing from person to person rather quickly. Good thing, I got out of the city limits and farther away into the depths of the country and have been in the clear, so far, of this bug that has been making its rounds. These are the times when you are grateful to be living in a rural area with your closest noisemaker being a woodpecker!

Living in a nice RV over this next year as we construct a cabin in the woods feels like an interesting adventure, but I'm up for it! I'm enjoying every moment, from the ground up! And here is Sgt. Dave's new "gameroom!"

As for my overall health, I do feel as if moving to the country suits me very well. I have the usual aches and pains that come with Addison's disease and with having a prior broken neck with cervical spine reconstruction and other major issues, but the ability to step outside and to stroll around the property seems to be good for me. I feel rejuvenated. My spirit feels renewed as I listen to the wind blowing through the trees and hear the birds singing their songs...it feels so simple, yet powerful to be tucked into the arms of nature.

My new view --- this is peaceful!

So, I guess over the next couple of years, we'll see how it goes. As for my emergency services, sometime over the next month, I will be going to meet with the local EMT's to discuss my rare disease and how the emergency injection is usually not carried on the bus, but that I have it on hand with instructions, just in case. I need the local crew to understand the reality of having a patient on their route who has Addison's disease and to go over a few details, so that, in the event, a bad situation occurs, they have already reviewed my condition and will be better prepared to confront the woman with the "weird" disease that might one day need immediate intervention for continued survival.

Meanwhile, I am grateful to God that He gave us this opportunity to be in the country. We've been married for over 26 years and have had this land for more than half our marriage. Making a new life for ourselves in the country is a dream of ours. About three weeks ago, we sold our massive two-story house, near 3,000 square feet, in the city, and now we're temporarily living in an RV over the next year as we begin to build our cabin in the woods.

Everything has changed.

It's easier to do the things that are necessary because you are enjoying the best of life while in between. Being on this land is motivating to both my husband and I to keep going and to keep making a difference so that we develop a wonderful family farm for generations to enjoy.

Having Addison's seems like such a small thing to deal with right now and I like that! I love the fact that we have major tasks in front of us, every day, and those tasks keep us distracted from some of the more ugly details of life that aren't such fun to face.

My quality of life is much improved by living in the country.

Every moment I enjoy in the country is magnified by the fact that I never have to live in the congested city again.

Thank you Lord!

# 140 - Tug of War is Necessary

I've seen so many people live with chronic health issues, from cancer to diabetes to Addison's disease or heart disease and their lives take a daily detour for medications, rest, exercise, treatments, testing and other acts that might be different from the "normal" person.

Living with a serious medical condition might mean you have good days mixed in with a lot of bad days. It might mean that you must go to the doctor frequently or that you have to take medicine on a regiment.

For me, I see three of my regular docs every four months, at least. In between my appointments, I try to stay on schedule with my medications and do what I can to live as healthy as possible. That means that some days I am full of boundless energy while other days find me pulling the covers over my head because I feel as if I cannot deal with the regular activities involving the world.

On some days, my body might be having such low blood pressure that it takes all my energy to simply get to the bathroom and back on my own --- my appetite disappears and I might feel extremely nauseated while struggling to not be pulled under this wave of low blood pressure. I take my stress doses, but this disease can really knock you on your butt.

Last month, I was speaking with my dad about fighting illness. I'm feeling rather sad that my father is now fighting his second round of cancer since my mom died from cancer seven years ago.

I'd like for cancer to disappear in a poof of smoke so we could all cheer and celebrate

Easter, me and my dad facing the bright Texas Sun, me with
confetti left-over in my hair. Dad was able to shake the confetti
straight out of all that hair of his.

Since we're having to fight cancer by known methods, my dad finally had no more unexpected delays and was able to have the port surgically installed in his chest that will be used for Chemo treatments. My dad is doing his best to deal with his recent diagnosis of this second cancer that is extremely aggressive, but the prospect of all he's about to confront can be rather daunting.

Of all times for us to be selling our house and planning to move! I feel compelled to get a little apartment on the outskirts of town so I can be closer to my father. Where is our organization fairy to keep this move on track? Oh, I guess I am that Fairy --- I'm on volunteer duty and do not have wings nor do I sparkle.

I tell you the same thing I told my dad...some illnesses play with you. One day they visit and do their best to knock you around, the next day they leave you alone. Some illnesses hit your hard, others make a slow-fizz approach before it slams you down.

Sometimes, you must realize the condition is pulling on you and tugging you toward a life you don't want to embrace...you do your best to live well and to not make this disease the center of your world, but the disease pulls and pulls, trying to wear down your resolve. I say, PICK UP YOUR END and  do all you can to get back what you've lost, so pull and don't let go!

Easter weekend...a positive tug in the health
battle to capture as many wonderful moments
as possible, in spite of ongoing health battles.

The Tug-of-War with your health can be quite challenging, but try to stay in the game. Take it day by day, one day, you might be on the losing end of the battle and other days, you might end on top of the world as a champion...and the other days, in between, when you can tug back and re-gain some ground, do it and be pleased to have not lost ground.

Savor your wins, enjoy keeping your ground and when the bad days hit, get rested to regain your strength. In addition, don't forget your mental health!!! Direct your mind toward healthy thoughts and keep a good perspective.

If you experience a low moment, go through it as quickly as possible, then get back on track with self-talk that is positive and geared toward successful self-fulfilling prophecy. Often, our mind and our words help to create the existence we believe we are worthy to receive.

Challenge yourself to start thinking simple improved thoughts, such as, "I deserve a non-cluttered bedroom" or I am going to find ten things to smile about today because I'm grateful for the good things in the midst of hard times.

Work on PRESERVING your sweetness and showing your GOODNESS and protect your innocence. Stay as mentally prepared as possible for the next Tug-of-War battle that will come.

I'm telling myself that I am confronting the unknown, in so many areas of my life, but I am expecting the best case scenarios to eventually come through. And at each bit of good news that comes my way or bit of shining arrow pointing the way to goodness, I am thrilled. All those tug of wars have been worthwhile and I'll keep fighting the good fight, for as long as I can.

# 139 - Good News is Good!

Sometimes, you need some good news.

Backstory: This past summer I had cultures taken that revealed a very serious bacterial infection with "high" numbers of infection for Klebsiella Pneumoniae. At the time, I didn't realize how serious this infection actually was, but I knew I was feeling terrible.

The specialized laboratory that ran my cultures had also run a list of 17 antibiotics that were tested for effectiveness against my bacterial cultures, a bacteria that is known for being antibiotic resistant. This bacteria comes in a wide range of variations, which can make treating it more difficult. If you have a good immune system, you will likely not have to worry about such bacteria being able to "grow" in your body, but for those of us who have conditions that impact our immune systems or for those of us who are taking medications/treatments that might make the immune system compromised, you can be more at risk.

It appears that my immune system goes through tremendous ups and downs. When it is good, it's really good and that means, for example, this past Fall I had been surrounded by family members suffering with the Flu, respiratory illnesses, stomach bugs, etc., and I didn't catch one little buggie. But, last summer, I over-extended myself in many directions, and I paid a price. Additionally, I was living under tremendous daily stress which is a BIG no-no for those with Addison's disease and the combination took a toll...I picked up this bacteria, most likely in a medical setting, and it threatened to chew me up and spit me out.

A lesson I learned is that I must limit the stress I confront on a daily basis so that my system is not depleted of valuable "fight" that should be directed to my Addison's battles. Staying away from those who create battles serves me well.

Thankfully, my Internal Medicine physician carefully reviewed the list of antibiotics that would have a chance to fight the bacteria. He selected a medicine that appeared to have the strongest impact on the bacteria numbers (the report gives the numbers of bacteria to start with and then the numbers after the antibiotic has been introduced for a few days).

I went through three-rounds of antibiotics, then I kept delaying the appointment for us to take repeat cultures. My doctor wanted to check on the bacteria levels to make sure we were keeping the infection at bay, even if I wouldn't be able to eradicate it completely.

Finally, a couple of weeks ago, I had repeat cultures taken. My physician sent the cultures to a highly specialized laboratory in California. The nurses were laughing with me because part of me was getting to travel to California. I guess it seemed especially humorous to them because they'd never had to send cultures to this lab.

It took extra time to get these test results, but this morning the doctor's office told me that the cultures they obtained showed NO BACTERIA and they specifically tested for Klebsiella Pneumoniae.

With my notepad and pen ready to take down the bacterial infections numbers, knowing my physician was already poised to make the comparison, I tried to prepare myself for the onslaught of information.

I cannot begin to express my joy at hearing my favorite nurse tell me that the doctor thinks my medical situation always gives him unexpected shocks, but this one was positive! The cultures showed NO abnormalities whatsoever.

The result is...healthy, healthy, healthy.

Therefore, on the days I am feeling drained, it's probably related to Addison's. But, during the time of battling this bacterial infection, my doctor told me that it is important that a patient battling a serious chronic condition does not blame every ailment on their condition or something like this bacterial infection can be easily overlooked.

So...I've been very blessed. The odds were NOT in my favor, but I can't help but think that my hard-won battles are a testimony to something greater than medical statistics that would otherwise point to a negative outcome.

Most of all, I know that I savor the beauty and strength of life with loved ones and with fabulous friends who are truly caring and supportive during these challenging battles. As I celebrate this good news that has surprised me, I am feeling rejuvenated!

It's amazing how a little bit of news can be so powerful!

I guess the point today is that you can't always listen to people in your life who aren't supportive when you need it most. If someone is hurting with you and dealing with their own suffering because of the bad news, that's one thing, but if someone ever uses your health hurdle as a weapon to wound you deeper than the pain of the diagnosis already inflicts, then that person should probably not be trusted with much of anything regarding your health nor with much of your life, in general. To remain healthy, you must accept the reality of who is REALLY in your corner and who is not.

From the tall guy, who is my son-in-law, Henry, to my oldest
daughter, Heather, to my sister, Robin, to my youngest daughter,
Stefanie, to her sweetheart, Brice. A shot from this past weekend.

Let's face it, dealing with a difficult diagnosis is not so easy when the battle is within the body staring back at you in the mirror, so it is important to remember that fact as loved ones around you are dealing with their own health issues. And when those times come to celebrate good news, remember to do it with the people who most deserve your love, time and energy.

For me, I have a list of people to thank today --- people who knew the odds weren't in my favor with this bacteria, but who helped me in my lowest points. Those people, I will remember and those people I will honor to the core of my heart.

# 138 - Road Trip Treasures and Tribulations

For so many years I enjoyed car trips. Getting in the car and heading toward a destination, whether it was to visit family or to go on a vacation, I always enjoyed the sights along the way that can only come from traveling on the road. However, my body being glued together, clipped together, plated together, three ribs removed and part of me patched back together with a tissue transplant has combined to make travel, in a vehicle, a torturous process.

My mind still has the same old excitement building with anticipation of taking a road trip, but I am now being mentally assaulted with anxiety as a road trip approaches because my body becomes a mass of pain and struggle as each vibration from the road moves through parts of me that are no longer "me."

I can see that my body can endure approximately two hours on the road, and then it is feeling the impact of the road trip, which is now a great hardship on my body.

This has been devastating to me because I have always loved driving and going places by highway. Even more upsetting, my daughters each live more than two hours one-way from my current home.

One consideration I've been making, lately, is that a truck is not the best form of transportation for my particular difficulties. Since my upper spine has been reconstructed, and is, essentially, in existence due to fused cadaver bone and double-sided hardware with screws and bolts, any road vibration or movement, especially in a truck, will naturally travel to the highest point and one little bump, in a truck, follows the natural course of motion which is not good for the neck area.

There goes my dream of wanting to buy a Land Cruiser! This is another area of shifting changes requiring adaptation to limitations. And yes, I despise the word "limitation." However, that word is simply a vocabulary description of what all of us must confront, in one way or another, sooner or later. Life always has limitations and boundaries that we must face.

A lower profile vehicle with a cushioned shock system is the combination I need to be able to travel, realistically. I had to laugh when thinking about this because I realize this is the reason many people with painful body-issues drive a Buick! Regardless, a truck, no matter how cushioned, is not going to work for my body during long distant travel that will be over two hours. For others, a truck will work, but for my cervical spine, it's a disaster. This fact is not a personal choice, it's a forced reality-check that I must confront.

That being said, I made the road trip from the Houston area to San Marcus as a passenger this week to witness my youngest daughter receiving her class ring at Texas State University. The drive was at least three hours, one-way, and this was a major challenge for my body to endure in a truck driven by my husband. But, I was thrilled to still be able to make it and to see such beautiful moments in life!

With my youngest daughter who now has her university ring!

My daughter, Stefie, was adorable as her 90-pound petite frame crossed in front of the stage area to get her ring and to dip it into the waterfall that held water from the San Marcus River that runs into the Guadelupe river. That is the tradition, to dip the ring in the river waters that play such a massive part of this university's history.

I loved it!

Her achievement is a beautiful time for me, as a mother. I have now witnessed both of my daughters getting their class rings for their university studies and this has been a huge blessing. I sit back and know that something went right for my two daughters to have had the drive, the ability, the support, and the commitment to earn their four-year degrees in such a strict amount of time.

We took our growing family out to dinner to celebrate our youngest getting her class ring, and it was wonderful that she got to be the reason for the celebration; it was her turn to shine. She earned this moment and a parent is always very proud to share such times in the life of their adult child.

Stefie and her Aunt Normandy, both
showing their Texas State rings! A family
tradition that's very special!

 

Timeless.

 

The following day, back on the road, I hoped to make it home without any major problems. About two hours into the trip, in a rush of prickling sensation, I completely lost feeling to both of my hands and then, as I stared at my hands and the weird numbness, it traveled up to my forearms. The numbness was a shocking experience because it did not happen gradually, it occurred with suddenness. I was sitting up, alert, moving around in my seat, listening to good music, my arms in frequent motion for this or that, so it didn't make sense. However, as the numbness rushed to my fingers and moved upward with haste, I begin to shift around, I leaned forward, stretched and did everything I could to get feeling back in my arms; however, the numbness kept increasing.

I shook my arms and squeezed my hands together while looking at them as if they were foreign attachments to my body. It was not a good feeling. Unlike impinged blood flow that can be returned with an adjustment of our limbs, this numbness remained for nearly 45 minutes. I could still move my hands and fingers, but they were in a state of being "asleep" in a flash and remained in this manner for an extended period of time. All I can think is that the spinal cord impingement that I still live with in my cervical spine had been jostled a bit too much, and I paid a price.

My spine issues go well beyond experiencing back pain, certain situations cause my spine to be under strain with the spinal cord still being impacted by direct impingement, so this affects the functioning of my body. It's not pleasant. And this, of course, creates issues with my Addison's disease. Many people with Addison's disease are dealing with additional problems that make managing the Addison's a difficult prospect. However, as a precaution, I did have my auto-blood pressure cuff in my purse to help me prevent an Addison's crash.

I can tell anyone with Addison's disease that a wrist blood pressure cuff is probably one of your best defense mechanisms to combat plummeting vitals that are often difficult to measure, until we are feeling the side-effects of fading vitals due to sudden blood pressure dips. Even with stress doses of HC taken while traveling, I still have trouble balancing my condition. It's a challenge.

I've heard many fellow Addisonians discuss travel by plane being just as difficult, if not more difficult, and often shocking, by the impact traveling by air has on their body. It appears that flying requires hydration to be a super-priority for those with Addison's. Also, a person's body endures more hardship with jet-lag negatively impacting an Addisonian on a level that most "normal" people cannot comprehend. I believe that having Addison's disease or Adrenal Insufficiency, especially if your condition is considered "brittle," can make any kind of travel a health challenge.

For me, I can't help but mourn my inability to travel by car without a second thought, as I had done for most of my life. Going on a car trip is now like signing up for voluntary torture for me, but it's amazing the level of torture we will endure to do things we love. Still, I opt to travel by road as infrequently as possible because I need to stay independent and the road trip can take a massive toll on my health.

I guess this is the reason I absolutely LOVE vacationing by cruise. Having the ability to retreat to your cabin and to be supine can be tremendously helpful for a person who has major health challenges, especially if you are not prone to getting seasick. Being able to enjoy such a vacation is empowering, but I can't orchestrate all family gatherings and special events to be held on a cruise-line. Such a shame!

Anyway, I have had an awesome time seeing my baby get her beautiful class ring and to honor her achievements. She's an amazing young gal and has much to offer society. She will make a wonderful Child Life Specialist.

My father-in-law with my Stefie!

And...I am going to work on test-driving vehicles that can better provide a cushioned, low-profile, shock-absorbing ride that is less likely to give me major wobble-head problems.

Then, New York, New York...HERE I COME! :-)