FOLLOWERS - BLOG BUDDIES!

Sunday, August 28, 2022

# 579 - 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.

1 comment:

LindaG said...

Good to hear from you. Glad to see you are managing and that God has blessed your family.
Be safe and God bless.