# 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!

# 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!

# 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! :-)

# 135 - Being Steamrolled

To be "steamrolled" is defined by the wide-web's Urban Dictionary as to be wiped out very quickly without any pause in the attack and to face rapid or continuous destruction.

Sometimes we can feel as if life is steamrolling us.

Life is full of challenges. I am going through several simultaneously. Isn't that the way it goes sometimes? Yes, I'm stuck in a place of feeling as if I am being steamrolled. Of course, it would be easier to deal with certain things if there were more time in between each event, but all of it is rather jam-packed into the same time-frame, and that's how it is going for me these days. I come up for air every chance I get.

Regardless, I will keep moving forward while knowing that dark days will soon give way to light. I'm an eternal optimist, so I know things will end up better than ever, as long as I hang in there.

One problem I've been encountering is serious nose bleeds. In the past 24 hours alone, I have been battling nose bleeds that make my surroundings look like a crime scene. I will be completely unsuspecting, perhaps reading a book, and all of a sudden I will feel a warm trickle going down my face. My nosebleeds are so serious that I have to cup my hands to catch the flowing blood and run to the sink. Usually, it stops as fast as it began. My nose is free of any sores or irritation, the blood is coming from higher...from somewhere that is obviously under pressure and needing release.

I was supposed to get an MRI of the brain this past summer, but I never went. Actually, the diagnostic imaging place was constantly back-logged and having trouble fitting me into the schedule, then I let life get in the way. Anyway, I think it's time to get it done.

Last night, as I laid in bed, sound asleep, I woke up with my throat full of blood and I reached my hand to my face, in the dark, and felt the warm wet sensation. Are you serious? Well, that my was first thought in frustration. In my sleep? This is ridiculous!

In a hurry, I turned on my nightlight to find my hand covered in blood. Fortunately, I had my tissue close by and was able to catch the blood as my head tilted forward off the pillow. I realized that this can't keep happening. Something is going on. Plus, the wobbly head sensation I've been having lately sure doesn't put me at ease. But, I have so many other things going on that it's hard to tackle each separate problem, which makes it overwhelming to decide which area to focus on first. Then, I remember to keep taking step after step, working to slowly diminish my list of problems with special attention to the most immediate issues.

I tried to think of what I have done differently to perhaps cause these nosebleeds --- all I can think of is that I've over-done it in the house this week to get it ready for showings, trying to get it sold. Today, I am forcing myself to stay in bed. If a vessel is under pressure, I'm giving it a break today.

On top of this most recent problem and is reoccuring and demanding my immediate attention, I have been forced to face the fact that I'm about to be admitted into the hospital, and if you are a regular reader, you KNOW how much I detest being in the hospital, for anything.

For the family members who do their part to stay in touch with me and who are interested in me as well as me being interested in them, they know that I have a hospital admission already planned for the first week of November. My doctor wanted to admit me next week, but I refused because my daughter is getting married in about two weeks. I don't want to take the chance on having something go wrong and me end up not being able to walk out of that hospital and be well enough to attend the wedding. I won't chance it. So, I asked him to push it back. Of course, he thinks I'm nuts, but it's not every day that your daughter is getting married. Also, I don't want to have anything done until she's returned from her honeymoon; if something were to go wrong, the last thing I would want is for my daughter to have her honeymoon tainted by a dreaded phone call.

If I have a choice in the matter, I will put myself on hold until after the wedding excitement and honeymoon is over. It might be the wrong choice, I realize that, but for me, it's the right choice for the time.

This wedding is more important to me than I can express. Even though I am struggling, I am determined to be present and without additional worries for this wedding. Afterward, I can be admitted to the hospital and hope everything goes well. Perhaps it will all go so well that I'll be able to breeze through everything and come right back home, but my doctor is taking extra precautions. If it doesn't go well, I won't have the added stress and pressure of feeling as if my situation is causing my kids heartache during a time of expected joy.

My sister knows of my hospital admission date and she will be by my side to make any decision necessary. My youngest daughter might be available as well and she'd be my first choice for necessary decisions regarding my health, if I happen to be knocked out and needing representation. My doctor has made it clear that I need to make sure that arrangements are made for a person to be able to act on my behalf, so I am ready. I'm doing my part. However, my youngest daughter is going through her own problems and so my sister is ready to step in and be the one to help, if needed.

For now, I am concerned that my nosebleeds might interfere with the anesthesia that I will be receiving while in the hospital. Even if I am knocked out, just like last night, a nosebleed might start and I am concerned that no one would know about it until I am in distress, especially because of the amount of blood that is involved. All I can do is make them hyper-aware of this potential problem and hope they stay alert enough to handle it, if it should happen at the most inopportune moment.

As for my hospitalization and upcoming procedures, this is following an amazing Baylor doctor taking my previous CTScans from this past June, scans of my abdomen, and he ordered a second-opinion radiology report. I'm glad he did because it cleared up some wrong assumptions by the first radiologist, but also revealed some definite issues that need to be explored further. Last week, this doctor called me directly. I can tell you that when a doctor is picking up the phone to call you on their own to discuss your radiology report and upcoming procedures and telling you that he hand-picked your surgeon, you know you better listen closely.

I got the call last week as I was heading to mediation for a lawsuit involving our house that had been destroyed by Hurricane Ike in 2008. Turns out, we had hired schemers who we were led to believe were Public Adjusters, so now I am dealing with that on top of everything else, plus a marriage that is disintegrating with threats to take away the things that mean the most to me. First, there are threats of doing what he can to prevent me from attending my daughter's wedding and next are threats to do his best to keep me from getting our acreage as part of the divorce, even though he doesn't want it, he wants to take steps to keep me from having it as well.

Then, to know that my youngest daughter is dealing with her own health issues and I cannot even make the trip to be with her during this time is pure agony.

Things seem to be pouring down, but I keep my faith and know that all of this external chaos cannot touch the peaceful joy within me that is still breathing and looking forward to better days.

I've been around the block enough times to know that better days are usually ahead, so it's good to never give up. Never!

It is regretful that so much is happening at once, but there is great joy mixed in the middle of it all...my daughter getting married is something that I have to cling to as other areas are a struggle. Getting to see her be married is one of my greatest delights, even though there is someone who would love to yank that possibility away from me. I've never had that kind of hateful thinking, so it's hard for me to understand. However, I will not let their sinister intentions interfere with my capacity to still experience joy in the middle of heartache.

I've already been able to make it past massive hurdles, so these in front of me are of little consequence to what I've already faced and conquered. In fact, a few of these hurdles in front of me now will soon be behind me and never able to present itself as a problem again.

Even though I am not looking forward to a hospital admission and am feeling a bit nervous about all that I will be facing, I am glad to be given the chance to get the worries of any potential problems behind me...the doctors will handle anything they see and I am hoping their expertise will only contribute to my increasing good health.

As for today, I better get back on top of that MRI of the brain that I was supposed to have so long ago. The nosebleeds are here with a vengeance and I don't want to go through more days of having to rush around trying to handle an internal busted pipe that is creating a mess. I hope it is simply a vessel irritated and that the irritation is not a chain reaction of something else --- I always opt for the most simple explanation!

For those of you out there who are facing your own hurdles that seem to be piling up on you, remember that you can get past all of them by facing them straight on and just doing what you can, day by day, to make a dent into the situation. It might be too overwhelming to deal with it all at one time or it might not be possible, but set your eyes beyond the hurdle, to the time when it will eventually be a part of your past. New hurdles will always come and that's why it is good to handle them as soon as you can, to prevent the pile-up. If I had done the brain MRI when it was ordered, I would have one less pile on my plate to scrape clean. As it is, I will do my best to do some catching up and to even get ahead of the game so I can be more prepared to enjoy each good day to the fullest.

And for good news, as I close out this post that is taking me FOREVER to write...I just got a confirmation that my brain MRI is scheduled early tomorrow morning, so that part will soon be finished and might help to find the source of these serious nosebleeds that catch me completely off guard. I'm taking my steps, bit by bit, to pass more hurdles!

I am wishing all of you the blessing of contentment with spurts of joy that will be so strong as to overshadow all else. To me, that is the best that life can give us.

This past Sunday, on my way to a memorial for
an old friend. Treasure life while you can!

# 134 - Be Who You Are

Lately, I have been searching for inspiration to keep going through the ups and downs of life, and the great thing about inspiration is that it is everywhere, you simply must be open to receiving it.

This past week, I came across some writings by Joseph Campbell, and I thought I'd share because every word is striking me with such depth that I cannot pick and choose which words to discard.

Mr. Campbell had me at the first sentence, "The privilege of a lifetime is being who you are."

Oh, if only all of us could truly accept the privilege of being who we are...not pretending, not lying, not allowing duplicity. It would be such a gift to ourselves and to others to be able to embrace ourselves by living with authenticity combined with compassion for others and for ourselves.

Anyway, read on. I hope you take something away from it that you need right now as well. After all, inspiration is there for the taking, we only need to grasp it and hold tight.

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The Hero’s Journey (On Living in the World) by Joseph Campbell
The privilege of a lifetime is being who you are.
What you have to do, you do with play.
Life is without meaning. You bring the meaning to it.
The meaning of life is whatever you ascribe it to be.
Being alive is the meaning.
The warrior’s approach is to say “yes” to life: “Yea” to it all.
Participate joyfully in the sorrows of the world.
We cannot cure the world of sorrows, but we can choose to live in joy.
When we talk about settling the world’s problems, We’re barking up the wrong tree.
The world is perfect. It’s a mess. It has always been a mess.
We are not going to change it.
Our job is to straighten out our own lives.
We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.
If we fix on the old, we get stuck. when we hang onto any form, we are in danger of putrefaction.
Hell is life drying up. The Hoarder, the one in us that wants to keep, to hold on, must be killed.
If we are hanging onto the form now, we’re not going to have the form next.
You can’t make an omelet without breaking eggs.
Destruction before creation.
Out of perfection nothing can be made. Every process involves breaking something up. The earth must be broken to bring forth new life. If the seed does not die, there is no plant.
Bread results from the death of wheat. Life lives on lives. Our own life lives on the acts of other people.
If you are lifeworthy, you can take it. What we are really living for is the experience of life, both the pain and the pleasure.
The world is a match for us. we are a match for the world. Opportunities to find deeper powers within ourselves come when life seems most challenging. Negativism to the pain and ferocity of life is negativism to life.
We are not there until we can say “Yea” to it all.
To take a righteous attitude toward anything is to denigrate it. Awe is what moves us forward. As you proceed through life, following your own path, birds will shit on you. don’t bother to brush it off. Getting a comedic view of your situation gives you spiritual distance. Having a sense of humor saves you. Eternity is a dimension of here and now.
The divine lives within you. Live from your own center.
Your real duty is to go away from the community to find your bliss. The society is the enemy when it imposes its structures on the individual.
On the dragon there are many scales. Every one of them says “Thou Shalt.” Kill the dragon “Thou Shalt.” When one has killed that dragon, one has become The Child.
Breaking out is following your bliss pattern, quitting the old place, starting your hero journey, following your bliss. You throw off yesterday as the snake sheds its skin.
Follow your bliss.

# 132 - Modified Yoga

This past week, I went to see a new doctor to replace another Dr. I have seen for the past decade. These kinds of switches are hard to do, especially when you have been through the wringer with one doctor and do not want to start all over with guinea pig testing.

Best of all, this new doctor's location is much closer to me than the other doctor which saves me a lot of time, it saves me money on gas, and I do not have to travel across three different highways to get there. Basically, she is close by and we hit it off instantly. As you know, not all doctors are likable.

In fact, she asked me if I had been able to do any kind of exercise with my mobility issues and I explained that I do like being on my land, walking, being in nature and that I had enjoyed doing Yoga a long time ago. Her eyes lit up. She said, "I want you to join me in Yoga next week, no charge. It's a modified Yoga class for people who have had joint replacements or other issues, and it will be unlike any other Yoga class you've seen before. I'll be there and think you will really enjoy it."

I accepted her invitation. Which she gave me a real invitation that she wrote out; she told me to call a certain number, to tell them the doctor had invited me and they will reserve a spot for me. It's a class that is available for attendance by invitation only, so I also do not have to worry about the Yoga perfectionist critiquing the rest of us.

I'm going to try it out.

In fact, I still have my Yoga mat. It's been a long time, but I am willing to tackle a modified Yoga program so that I can stretch these muscles of mine and give my joints some exercise under the guidance of someone who has seen MRI images of my body that has been put back together by human-engineering.

Also, this is a phase in my life that is finding me making new friends, trying to get out of the house more often and re-building my life in a better way. One meaningful outing I had yesterday was to see my grandmother. Since my mother has died from breast cancer, it is especially important for my grandmother and I to have time together, we both miss my mom so much...my grandmother had to lose a child and be so lonely to have her daughter still, but at least we have each other. She's 83 years old now and has had a rough time of it, but she still laughs and wants me to be free of any suffering. Unfortunately, for all of us, life includes the bitter with the sweet.

I made both of us dinner and we talked for hours. Nothing feels as good as being with her and getting to see the strong stock I am made of!

Also, I look at her and realize how my oldest daughter and my grandmother are nearly identical in body type. My daughter even has my grandmother's feet...like a carbon copy. They both are the exact same height, tall women, and they both have full figures. Yes, my oldest daughters takes very much after my grandmother who could still wear a bikini in her mid-40's and wear it very well. My grandmother used her tallness to exude gracefulness and that is my daughter...even their arm and hand movements are so similar. It is a striking resemblance and I'm glad to see it so clearly.

The great thing is that the positive changes in my life are bolstering to my physical state, my emotional state, and it lifts my spirit. No matter what anyone says to me to be destructive, I am full of light and can see the beauty of life all around me. I'm so thankful to share that side of me with others who appreciate me for the person I am, the good and the bad. A grandmother is the perfect person to share your love with...I am blessed to have her for as long as I can, especially since my mom had to leave us all too soon.

Life is not always as we wish it to be, but it can be beautiful just the way it is...as long as the right perspective is maintained. I'm doing my best, day by day, that's all we can do, strive to do our best with what we are given.

# 128 - Sharing the Soul

As a mom, I've diligently kept all of my daughters' art work from their childhood. Years ago, I made extra large-art portfolio holders by stapling two posterboards together, leaving the top open to slide in their artwork. This kept their work from being bent and creased.

In an easily accessible area, the portfolio was kept behind my china cabinet with the edge of the portfolio barely sticking out to make it easy to retrieve for adding new artwork to it.

Recently, I took a day to spread out some of their work and to simply gaze upon the beauty of each piece. I'm considering buying very large frames so that I can create a collage of framed artwork for each daughter; I plan to put these collages in the guest bedroom for everyone to enjoy.

I imagine, one day, when my children have children of their own, my visiting grandbabies will get a kick out of seeing their mommy's art, created when their mommy was a child. It will be a link from childhood to childhood.

Some of their work is abstract, other work is "still-art" and a few pieces reflect a historical event. Each one is precious to me.

 

 

Most moms love to get their child's artwork, but I can't express how excited I had been to get each drawing, each painting, each sculpture...I never wanted to buy any art because I had little artists living in my household.

To add to the art of my children, I have my own artwork throughout the house that I've produced for years and years, especially some larger pieces that came with studying Visual Arts and Design at the University of Houston. I've been blessed to work in the Arbor Building through many art classes and to have professors of great artistic standing be my teachers in specific art methods.

Obeying my own need to create art is a tremendous stress reducer for me. However, I had some serious health battles that would put a wall between me and my need to create art, especially the battle with being able to use my arms since they were not getting adequate blood flow. But, I had two major surgeries to better enable blood to get to my arms and hands, a two year process of surgical intervention that went into three-four years after they decided to remove my minor pectoral muscle on the right side since it was shredded by bone shards. Even if the major surgeries were horrific and came with critical complications, I'm happy that my left side works wonderfully, but my right side was never properly "decompressed" by the removal of my first rib along with the removal of the anterior and scalene muscles in my neck --- I also have artery clips along the thoracic arteries as well, both sides.

The surgeries had to be done a year apart. Each one required approximately one year recovery, mostly because of the collapse lung that each surgery left me to deal with --- because of a paralyzed diaphragm. The nerve in your body that is the "control wire" for the diaphragm, which controls the lung, well, this "control wire" was impacted by each surgery, so each side ended up with a collapsed lung following surgery. It would take about 9 months, each time, for me to again be able to inflate my lung. Let me tell you, everything done to me in the dice and chop operating room could not compare to the lung collapsing. It's not a good feeling when your lung collapses and you can feel the lung sticking to itself --- to inflate it, with each labored breath or with pulmonary rehabilitation causes tremendous agony.

My left side was surgically decompressed by this method in 2005 and the right side was done a year later, in 2006. Since I am still unable to freely use my right arm, it's an ongoing battle. Even the simple act of blogging can cause me trouble as the right arm goes numb and pain from the lack of bloodflow creates pain down the arm and a sensation of choking on the right side of my neck. It's a big price to pay, but I try to position myself the best way possible so that I can type, type, type. I can use my arm for a short time, but it's never felt the same since the days when I could use my arms without a second thought and that was ten years ago.

I guess this is another reason I've treasured my daughters' artwork. If anyone understands the desire to create art, to play instruments and to do things that are ordinary daily activities without a thought about anything other than "Which color to use next," or "Which key to play next?" -- I do understand having the burning desire to do such things, yet not be able to do them because of physical limitations. I also understand what it means to push past the pain, to keep going in spite of challenges. Sometimes I've paid heavily for those decisions, but I rarely regret it.

Good thing I have partial use of my right arm since the surgery, it is better than before surgery, but still not completely workable as is my left side. I can often work around my incomplete decompression. Maybe one day I'll have the luxury to have the right side fully decompressed so that I can do normal things again, like drive to see my daughter in Dallas without it being a huge undertaking that causes me major issues, such as being able to feel my arm. Driving requires limited mobility, a huge issue for me.

Yes, maybe you can see a little through my eyes as well that this artwork is more meaningful than I can express.

Living life as fully as you can means different things for different people. Some people are given every tool and every healthy benefit to be able to live a beautiful life, yet they still take it forgranted. My mindset feels that there are enough problems, day by day, for me to conquer; I certainly don't need to add any more problems to what I already face. For many, like me, just getting through their day is a personal battlefield that brings constant reminders that simple things can be great challenges.

Others seem to look for problems because it appears they need more drama in their life or they are not satisfied with having an "ordinary" life full of blessings that deserve focus instead of contrived issues stemming from owning an ungrateful heart. I've seen so many people create their own problems and these same people proceed to wonder why their life is full of problems?

Personally, if I have extra energy and physical capabilities, it must go toward the constant effort to keep my health balanced so that I may have that awesome day with a few minutes at the piano or to do simple basic tasks, such as the laundry and dusting the furniture. One thing I must say is that a good day for me can indeed be jam-packed; I've learned to fully take advantage of a good day, probably much better than a "regular" person without any health hurdles.

However, once my neck broke, in 2009, it required massive reconstruction and double-sided hardware to support the neck so it would not collapse again. To add to the thoracic artery issues, I found myself confronting more challenges on top of existing challenges. It felt like I was being sandwiched between major health assaults that I had no control over and I did feel squashed like a bug. For a while, I didn't feel very excited about the added loss of sensation in my hands due to a spinal cord injury. I didn't like the struggle to move my feet forward and to lift them to take a step...all of it took more effort than could be expressed, even to those closest around me.

The spinal cord was squished between two bones that had broken, so it damaged the spinal cord in a manner that could not be repaired. It created a large lesion on the C2 section of spinal cord that is still present and visible on MRI scans. Still, I regained more feeling and better use of my arms/hands and legs/feet than the doctors thought were possible. I've been given more than my fair share of miracles, even if I've been given more than my fair share of physical hurdles.

Through it all, I've learned there is something powerful about art --- it is a healing expression of humanity. I finally understood that for many people, especially for those who have suffered deeply from physical or emotional pain, a piece of art can seem to speak to you or for you. Art can capture a feeling, it can represent the best in you, the worst in you or it can bring hope beyond words.

For some dedicated artists, on any level, from novice to accomplished, there seems to be a sharing of the soul in some of the work produced by particular artists. Often, you can feel pulled into a piece of art. If you haven't had this experience yet, then I recommend that you view art differently. Try to search for a piece of art that truly SPEAKS to you with such depth that you feel knocked out of your shoes. It's out there, you might have just not found it yet, but when you do...you'll know it.

I have a few personal favorites that definitely evoke great emotion from within the well of my soul.

In fact, I'll be scanning a few pictures of historical art that have brought me great comfort and hope during times of great turmoil.

But, there is a certain peace, joy and innocence that comes with looking at a child's artwork. It's like looking out a window to see a different view of sunshine.

How many times have I been delighted by these works of art created by my children? I can't count. Even through difficult times of their own...my children created with bright goodness, always doing their best to get their mind's eye down on paper.

I love the effort. I love the result. I love the sharing of their souls.

# 127 - Focusing on Priorities

To follow up from the CTScan showing issues, I have an appointment with a "renowned" gastroenterologist in Houston's Medical Center that is with the Baylor Medical Clinic. The only problem is that it takes so long to get into one of his available slots, but I'm set for August 10th. Since I'm in constant pain in the entire abdominal wall, this will be an excruciating wait.

But, I can do it.

As usual, the biggest problem with an issue like this is to manage my Addison's. I am having a very difficult time getting out of the state of exhaustion; I just feel like I'm dragging badly.

To combat this, my doctor has increased my daily hydrocortisone intake another 10mg in the morning and an additional 5-10 every afternoon. Then, if I feel if I am still sputtering, I take control and administer more HC until I am feeling more stable.

I could have seen another doctor in my area sooner, but I've learned to not mess around with doctors who are mass producers and to stick with doctors who are better known for being in their line of work because they actually are diagnostically talented. And, I've learned to choose doctors who are connected to the hospitals I know practice higher standards of care and who have more capabilities at their facilities.

After you've done your part, the rest is in God's hands. All I know is that I have to be pro-active in getting myself into as healthy as a state as possible because the next big event coming in our lives around here is my oldest daughter's wedding in October. That's only a hop, skip and a jump away!

For now, until that appointment on August 10th, I have lots of things to do --- or to TRY to do! We are getting the house back in order since Stefie moved out to an apartment next to her campus.

Me & Stefie saying goodbye as she
leaves for college this year.

Things have been rearranged because of all the furniture we gave to her, in an effort to scale back our own belongings and to help her start her own life a bit easier, so now we can make things look even less cramped in this big house of ours. Hopefully, next week, the For Sale sign will go back into the yard and we'll get this big baby unloaded!

Another item on my agenda is my daughter's wedding shower here in the Houston area. That will be on August 4th and since I'm a typical mom co-hosting her daughter's shower, I have LOTS to do still. I hand-made all of her wedding shower invitations and this week I will be starting on the Alice in Wonderland themed decorations. It's been a lot of fun to cut, glue, glitter and print....makes me feel like I'm doing art projects for a really good cause! This is definitely a time when Pinterest is a source of beautiful ideas, even though I'm still lagging behind in how to exactly use this great site. I'm learning.

Heather & Henry

Heather's wedding is fast approaching and I'm so excited that I cannot express it in words how I feel! As far as Addison's Disease goes...I will DEFINITELY have to prepare myself to take stress dosages prior to traveling for the wedding and continue taking higher maintenance dosages to keep up with the physical strain and emotional strain that will be taking place in my body. There's just no way that this wedding won't have a huge impact on me...she's my baby! Even so, Heather has diligently taken great care to handle every element of her wedding and I'll be so happy to be with her the week of her wedding, to help pull it all together.

Heather & Henry - Engagement Day

I am so happy to be there for her...she's eager for me to help her with organizing for the wedding and for the honeymoon preparations since they will be traveling to Europe, and you can bet that I'll be cleaning house for her on a "mommy level" so that her and Henry can come back to a house that's without any worries. Her dad will be great as well, he'll help with ceiling fans and other things that I can't reach without a step ladder and I'm sure he'll be doing lots of cooking.

Together, we'll do our best to keep the two kiddos on track and to help remove stress from the days leading up to the wedding. I want them to relax and to focus on the sacred part of being married...kind of a quiet reverence for the huge step before God that they are about to take. We'll definitely be pulling the best part of ourselves together so that we can pray for these kids as they begin their marriage...for a mom and dad to work together to pull blessings over their children, I believe that says a lot and is critical for a young couple to get the boost to their marriage that is memorable and precious.

No matter what is going on within family dynamics, the important issue right now is that these two young adults be given every bit of support that can be reasonably given to them as they begin their marriage.

The good thing is, in the face of hard times, good times, I-don't-think-I-can-stand-it times, and the most connected times...both of these kids come from parents who have made it together, in spite of problems. Marriage is something that can't be discarded without major consequences and that is something you want to pass on to your children. Marriage is something that takes a long time to build, but can be demolished fast by doing unloving things and saying unloving words...as long as they put the goal of being kind to one another as a priority, they'll find more joy together. I hope they get this concept down into their bones as they start their marriage. As long as they care about the feelings of their partner, there is a good marriage to be had.

It's a serious thing to have a wedding...it's not an event to be treated like a party because it is so far above any "party" that can be imagined. Yes, it should be a celebration, a reverent celebration in the joining of two people as one in marriage while witnesses watch the moment the couple goes from single identities to two joined as one. A wedding day is a pivotal day to be marked in their history as a day that can never be erased. It's a day when a single person with an singular identity becomes melded by vows to another person in a manner that should last a life-time.

If anyone can do it, these two kiddos can. In my book, they've proved their love and determination to be together and to build a life together. Oh, there will be rough times ahead, but there will also be beautiful moments that will make it ALL worthwhile.

Yes, marriage is to be respected and to be honored from the moment the "I do" is said until the moment no more words can be said.

October 13, 2012 will be the day these two will be joined in Holy Matrimony. I will be honored, touched and overjoyed to help them get to the altar!