# 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.

# 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! :-)

# 136 - C. diff Danger - Protect Yourself

I am a writer, a blogger, a simple woman. What is it that has been said of blogging? That it is the graffiti of writing? Well, I've probably put out some graffiti in this attempt at what I call "Reality Writing," and my opinions are personal opinions, but my sharing is always a heartfelt effort mingled with a desire to be informative. This week, I have been reading some of Peter Eisler's writings. He is an investigative journalist with USA TODAY, and the recognition he receives for his work is for good reason.

I look forward to reading more of his work, even if it makes my skin crawl...in a good way. I often have to pause while reading his work because each sentence is a powerpunch to the brain...it has to be absorbed with a chill-wiggle before I proceed to the next sentence. You can bet that I'll be following his reports, and I suggest you do the same.

I'm passing this particular topic along because having a broad international readership provides a great spider-web opportunity to help spread information. One little thread of knowledge leads to another, around and round it goes.

Since many support boards and groups read this blog, I am hoping you can do your part to spread the word about this bacteria I have just learned about in one of Peter Eisler's articles. It's called, "C. diff" which is short for Clostridium difficile. This bacteria could be a danger to any of us, especially those of us with known chronic medical conditions. Understanding C. diff might be vital for each of us to have an added edge to avoid this bacteria and the complications it could invite into our body. I say, face the eye-popping truth revealed in the article that I am providing via an attached link. As for me, I cannot turn my back on potentially life-saving research; I must pass it along.

Since I have had my fair share of hospitalizations and have another one fast approaching in November, the information I've recently read on a hardy bacteria called "C. diff" has apparently awakened my brain to new dangers at many different kinds of medical facilities. Yet, it seems that many of these medical facilities do not want to fully address. C. diff as a sinister bacteria making an impact upon their controlled environments. It appears that many medical facilities are learning that C. diff is not so easy to shoo away with the squirt of standard anti-bacterial cleanser.

In Peter Eisler's article, he provides in-depth research to bring awareness about the seriousness of bacterial enemies, such as C. diff, and their wiliness to escape destruction. While reading Mr. Eisler's article, I could only imagine this bacteria to be the foundation for horror sci-fi movies, its ability to cling to the cracks and crannies of hospital equipment and beyond is terrifying. The way this bacteria manifests itself in the human body is no less unthinkable except that is is thinkable. C. diff exists and the realities of it being in a hospital near you is likely.

This bacteria has proven to have deadly consequences. Just as we carefully strive to be dutiful in locking our doors at night to protect ourselves and our families, it would be wise to know what is on the other side of that locked door. And who hasn't had to made an occasional trip to some kind of medical facility? Sooner or later, most of us have to make that trip, dreaded or not. Are you thinking that you are safe because of that hand-sanitizer you carry around? Think again. Do you believe all hospital-strength cleaners and hospital-strength hand-sanitizers installed every 3-5 feet will be your first-line of defense against this bacteria? Think again.

That mop that the maintenance crew is swiping down the hall might not be doing anything but tickling this bacteria.   

For me, Peter Eisler had me thinking, first and foremost, about the disinfectants and cleaners used by many hospitals...once you learn about C. diff bacteria, it is quite amazing to discover many hospital disinfectants currently used are not able to kill this bacteria. Changes in cleaners is a simple administrative decision that could be the start in saving lives. However, for a change to occur, acknowledgement of a problem must first be admitted. Unfortunately, hospitals are like the rest of society after a problem is discovered...too many think that the problem won't hit their doorstep, so the foot-dragging toward change often results in disaster.

More than anything, Peter's investigative reporting demonstrates a direct link between awareness and resulting action.

I suppose there will be many hospitals who will avoid Mr. Eisler's investigative works as if it were the plague itself. Facing it might mean accountability. His article embraces hard-hitting information which would demand an end to blind-bliss that creates lethal ignorance. However, one nurse, one patient, one resident in town can do their part to pass along Mr. Eisler's article to promote change. If questions aren't asked, everyone keeps their mouth shut, cover-ups continue and denials remain in place.

Life has continual lessons, avoiding a problem or pretending it doesn't exist won't work. Only by educating ourselves, confronting the issue and following through with an evolving plan can the problem be erased or minimized.

And the C. diff problem is ALL of our problem because bacteria is not a selective enemy, especially when you look around and believe a medical facility appears sparkly clean. It's hard to imagine that deadly bacteria can still be hiding in the midst of a sterile environment, but C. diff proves that to be the case.

However, I urge my blog readers to digest this informative article while remembering that bacteria knows no boundaries, bacteria does not require a passport to travel. This bacteria is likely to impact whatever country you reside in, and it would be prudent to at least be aware so you can question your hospital about their protocol regarding this bacteria, especially if you are a health care worker.

Regardless, remember that most hospitals are run the same as large corporations with liability as their main concern, so the downplay of C. diff statistics is often conveniently shifted with pass-the-buck techniques in an attempt to keep the bacterial "source unknown" and this gives the excuse for patient stats linked to such bacteria the lack of a papertrail. Why would a hospital want to test their patients for C. diff and take accountability for their contamination when a patient may have just been transferred from another facility already infected? If the already-infected patient is counted as testing positive for such a bacteria as C. diff, then the hospital that did not originally cause the infection might be held to the fire. Of course, this blame game comes with a high price, often paid in full by unsuspecting patients who will become infected because of this contagious bacteria being swept under the rug, so to speak. Just remember, this bacteria will happily live under the rug, it can't be swept away so easily.

Blaming another source as a possible excuse for a patient being exposed to C. diff is an obvious ploy to keep distasteful record-keeping from sticking to name of a medical facility. However, this is one problem that proves that denial is not a viable option. C. diff causes deaths that are hard to explain.

Would it really matter where the original source of contamination came from if all medical facilities were required to keep their own records to reflect each and every patient that has tested positive for such bacteria infections? Perhaps strict record-keeping protocol would lead to a better understanding of which facilities have the bacteria invasion under control and which ones need to get a handle on such serious problems.

Peter has shown that some hospitals do indeed record each and every patient diagnosed with such bacterial infections, regardless of the possible original source of contamination...simply keeping record of the number of infected individuals in their facility is giving power to the movement toward controlling contamination. It is refreshing to see some hospitals at least taking ownership for patient stats regarding this bacteria and others, while still acknowledging that the original exposure to the bacteria might have come from another facility.

Read the article and let me know what you think. I know some of you prefer to email, but just know that I am often slow to open my emails. I am very confident that Peter Eisler's work will make a positive difference in the world because his writing has brought focus to a bacteria that is apparently not as insignificant as liability-protecting entities would have us believe.

Title:	Far more could be done to stop the deadly bacteria C. diff
Author:	By Peter Eisler, USA TODAY
Publication:	USA TODAY
Publisher:	USA TODAY
Date:	Aug 15, 2012

Learn more about C. diff, spread the word, click on the link below and arm yourself with the power of knowledge.

http://usatoday30.usatoday.com/news/health/story/2012-08-16/deadly-bacteria-hospital-infections/57079514/1