# 141 - The Country Agrees with Me!

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

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

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

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

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

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

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

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

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

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

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

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

My new view --- this is peaceful!

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

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

Everything has changed.

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

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

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

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

Thank you Lord!

# 140 - Tug of War is Necessary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

# 139 - Good News is Good!

Sometimes, you need some good news.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

# 138 - Road Trip Treasures and Tribulations

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

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

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

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

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

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

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

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

With my youngest daughter who now has her university ring!

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

I loved it!

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

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

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

 

Timeless.

 

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

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

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

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

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

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

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

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

My father-in-law with my Stefie!

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

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

# 137 - KPC - Klebsiella Pneumoniae

Being told you have a bacterial infection is something most of us have experienced. Most of us have had to take anti-biotics for some reason or another. Some bacterial infections are rather simple and others are becoming difficult to treat because the bacteria are building up their own resistance, their own defenses, against anti-biotics of today.

I have another doctor appointment tomorrow, but a couple of months ago, I was tested and shown to have Klebsiella Pneumoniae bacteria. I had never heard of the word. However, I was not very worried, not until I began to see this word pop-up in the news. Then, I began to feel guilty for not pushing my own health issues through because I had allowed myself to fall through the cracks.

Personally, I am thankful that it appears I do not have symptoms, even though I have tested positive for the bacteria Klebsiella pneumoniae. However, I am getting a double-check on that tomorrow. I did speak with the diagnosing doctor's office today to confirm the presence of this bacteria and will see my Internal Medicine doctor tomorrow to see if I should go ahead and start on a preventative round of anti-biotics. I'm still learning about this bacteria, but am grateful it's not the KPC variety.

Most important, after I read such terrible things regarding this bacteria and felt like I was spinning in circles, a profound source helped me to sift through the basics regarding this bacteria. That's when I truly began to understand that Klebsiella is a bacteria that has been around for a long time and you can have the bacteria in your system, but NOT BE INFECTED. This source helped me to understand that 1 in 100 people might test positive for this bacteria, but they might never get sick because their immune system keeps the bacteria from colonizing into an infection.

However, when it is KPC, it is dangerous. KPC is a variant of Klebsiella.

Very often, a person with this bacteria that has colonized will end up very sick. If a person develops sepsis and dies, the family members might not even know that KPC was involved or they might hear the word Klebsiella mingled with the word sepsis and it would be critical to know this because it means the patient was exposed to bacteria, most likely while in the hospital for the initial reason they were admitted.

If you or someone you have known has been very ill from a KPC infection or if someone you know has died from a KPC complicated infection, please email me.

For those of us with weakened immune systems, this bacteria is definitely a concern. If you are going to be hospitalized, be sure to speak up about health care workers being diligent with their hand-washing and sanitation efforts. If the health care worker comes into your room, washes their hands, puts on rubber gloves then proceeds to touch the bed railing, the remote control, the room door handle, the sink faucets...then that person is not exactly protecting YOU from bacteria, they are only protecting themselves; You should SPEAK UP. Remind them that you are not wearing a latex protective coating and could they rewash their hands and not touch other items before asking you to open your mouth or before handling items that will touch your own body fluids. It's Germ-Control 101.

Of course, if you're unconcscious, the hard fact is, you will depend on hospital staff to still maintain rigorous sanitation habits, even if your eyes can't keep an eye on their effort toward due diligence to not spread infection.

Again, if you have had an actual KPC infection or know who someone who does or who has died from one, email me at FindingLana@yahoo.com because we can take steps to bring awareness to this dangerous bacteria.

As for me, I am going to be getting more cultures done to make sure my bacteria has not become an infection or that it is not becoming stronger...so that I can keep this bacteria in my body from colonizing to the point of creating a deadly infection.