# 136 - C. diff Danger - Protect Yourself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

# 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.

# 129 - Scars and Hurdles

One of the side effects of having Addison's disease is to have severe abdominal pain. In my case, that has been one of my hallmark Addisonian issues since my diagnosis in 2001.

For those of you who are regular readers, you might know that my gall bladder suddenly died in 2009 which led to a series of abdominal surgeries that were not pleasant. I laid in my master-bedroom with a dying gall-bladder and extremely ill because, at first, I could not tell that it was different from regular Addison attacks. However, within 24 hours, I was telling my household that I KNEW something wasn't right. This was a hospital trip I dreaded, and one problem seemed to boomerang into the next, from the gall-bladder onward, for the next several months. And here I am now, with severe abdominal pains that have steadily increased over this past year and another go-round with already knowing something isn't right.

This summer I had a CTScan that showed several potentially serious issues and today I finally met with a very experienced gastroenterologist with Baylor. Thankfully, he wants to try to keep me out of the hospital --- which I cannot express enough to others how much I detest being in the hospital --- I am beyond grateful to him for this concession. However, he spoke very plainly and straight-forward to me today about the high risks involved for the colonoscopy and endoscopy he wants to do as soon as possible. There are things he can't see unless he performs these tests. And he said he needs to get in there and take a close look around, from top to bottom, literally. At least I have my humor intact!

Any time you've had abdominal surgery to the extent I've had, you run the risk of scar tissue being a problem for these tests. Due to the nature of my past three abdominal surgeries, he said that I'm at a high-risk for perforation during the procedure. He told me he'd avoid it as much as possible, but that I am definitely high-risk for this to occur and there's no way around it, other than to not get this test and go for a barium enema-style test they did 30 years ago. However, with Addison's that will present its own set of problems. Plus, he can do the colonoscopy and endocscopy under the same anesthesia. I just asked him to please use different equipment for each end!

Anyway, he was a straight-shooter and said that I needed to be very clear that since perforation is such a high-risk for me that I needed to know, if that happened, it would require immediate, emergency surgery. He said that the surgeon he is selecting will be vital because this is when experience is key to knowing when to not keep pushing the scope against resistance.

In fact, he gave me his typed paperwork upon the end of the appointment that said in writing, "Best to try to have endoscopy and colonoscopy exams with anesthesia but not certain if exam can be completed due to surgeries, increased risk of perforation and incomplete exam."

Yes, I understand. Clearly. I'm not jumping up and down, but I get it.

After giving an old-fashioned exam of the abdominal area with probing hands that could probably feel a question-mark easily, he brought in one of those "prepping" packages for a colonoscopy, which I cringed at seeing. AUGH! If you've never done one of these, don't let it stop you from having a colonoscopy, but I will admit, it's not a beautiful experience! With Addison's disease and the problems I have abdominally, he gave me two days of additional instructions for prepping, but it's been so many years since I've had one of these tests that I'm already dreading it.

It's good that I brought it a CD copy of my CTScan along with a report because he read the report and said there was a big problem with it. This is another area when an experienced doctor can be hugely beneficial. He said there was no way the dictation on the report was transcribed correctly. So, he has sent off my CTScan CD to another radiologist for a new transcription and correct report and he put this in writing to me as well. This doctor was one thorough dude. I've NEVER had a doctor do this before today. I have teams consult with each other, but never have had a doctor literally say that he didn't trust the report.

Usually, they will order tests to be repeated or will order different tests, but they rarely admit that there is a problem with the original radiology report and I've never had a doctor tell me that they are having the scans looked at by a second radiologist so a second report could be drafted on the same CTScan.

There's a first-time for everything!

Therefore, take the time to get copies of your radiology work-ups to take to any other doctors...it might be worth your time.

There were other things we discussed that were a little hard to hear, but I am taking it one step at a time. I'll wait to get my testing done and to see if I make it out of there without emergency surgery before I start to tackle the next issue.

Since I am babysitting my five-year old niece until the 27th of August, she is my shadow. Well, as she'd say, she's not just five years old, she's ALMOST six as of the end of this month. She went to this appointment with me, and I am proud to say, she behaved like a little doll. I brought along a notebook full of blank pages, and since she can read, I wrote two pages of questions, leaving a blank after each question for her to write her response. It worked out wonderfully. She kept busy with her notebook, reading each question and using the pen I'd attached to the notebook to write out her carefully written answers.

And yesterday, before the appointment, I went ahead and showed her the scar on my abdomen so she would not be shocked by it upon the exam. Thank God I did because exam time came and it was no big deal. However, I was not going to take a chance since she had discovered the scar at the back of my neck a few weeks ago, from my cervical spine reconstruction --- as I was putting my hair in a ponytail in front of her as she sat on my bathroom countertop --- and she began to tell me there was a bad "sore" on the back of my neck. At first, I didn't know what she was talking about because I didn't have a sore. What sore??? Then, she put her finger on my back and ran it along the scar that is a few inches long, "This," she said, "...it's a BIG sore."

My heart dropped. Oh well. I had to explain that it's not a sore, it's a scar, and it doesn't hurt anymore. We talked about the difference between a sore and a scar. As for hurting, at least the incision itself doesn't hurt, so I didn't fib. We didn't exactly get into internal hardware, she is still technically five years old...hardy har har. Anyway, upon her discovery of my scar, she raised her shoulders to her ears and said, "It looks like it hurts so bad!" Actually, I was the one who felt bad for HER. Needless to say, I was shocked that she paid close attention to such things, and I did not want her being caught off guard again. My sister and I discussed how to handle it...knowing she'd not understand the terminology used by the doctor and since she'd learned about scars, we knew it would seem like an ordinary trip to the doctor's office. And, that's what it seemed like to her, regular trip to the doctor.

For me, it wasn't so ordinary. However, I am moving along in life. With the support of loving family and friends, I am always ready to bounce back from the next stumble. Watching the Olympics lately has given me such inspiration...those athletes have bodies that are beyond comprehension for most people, whether you have health issues or not. Yet, many of those athletes overcome major hurdles and injuries and life's obstacles. Behind every person with a medal hanging around their neck, there is a life-story waiting to unfold, everyone has a story. Yesterday becomes a life-story.

And each person has those special people who have loved and supported them all the way through, good times and bad.

In spite of my own hurdles, although not Olympic in size, I keep going. Some days, I feel as if it is an Olympic feat for me to simply put one foot in front of the other; other days I can almost run with the wind, yet I am always thankful for each and every step along this journey.

# 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.

# 109 - Longing for the Little Things

After I became very ill with Addison's Disease over a decade ago, I had deteriorated so seriously into decline that I found myself bed-ridden most of the time.

At a formerly robust, energetic, and non-stop 33 years of age, I felt despair at being trapped and with a loss of independence. I had gone from being fiercely active as abundant energy flowed through me, to being halted in my tracks...well...I could barely even make tracks any longer because I could not stand for long, at least not on my own. But, the truth was, I felt as if I had a need for independence that could not be negotiated. Doesn't everybody feel that way?

I certainly felt unstoppable, until I got stopped in my tracks, by Addison's disease.

There is a song by Tim McGraw, "Live Like You Were Dying" and the lyrics give the story of a man in his 40's after he's received bad medical news. He decides to live it up, so he went sky-diving, he went rocky mountain climbing, and he went two point seven seconds on a bull name Fumanchu.

I love this song. It sums up the burning urge you develop within yourself after medical professionals tell you that they are not so sure that you will make it. Your brain must suddenly learn to operate without the body as a partner; when the physical body fails you, you find that your brain begins to work over-time. Normally, the body would partly keep you busy...our auto-pilot for physical motions can be fascinating. But, as you are forced to lie in a hospital bed and are without your normal busy life to keep you distracted, your mind begins to expand as it never has been given the chance to do previously.

Being STILL, especially forcibly, for extended periods of time, can definitely CHANGE YOUR LIFE FOREVER.

I realize that some people become seriously ill, yet they still have the choice to do normal things for a while because their body is still cooperating. Hence the song by Tim McGraw with his main character still being able to ride a bull named Fumanchu. However, for me and for many others, an illness or sudden injury can mean that everything in your life has turned upside down and the option to sit on that bull on your own accord has passed by.

For me, I hear this song and I love it, but I think, MY GOODNESS, during my health downfall, I didn't have the choice to go skydiving, especially not with living precariously with Addison's Disease. For me and for others, finding yourself with a serious medical condition or tragic injury might not only mean that you couldn't go rocky mountain climbing, it means that the very simplistic things are unattainable. Forget the dramatic "I'm-Really-Living-Now" kind of moments, how about being so far gone that you are lying there longing to do the little things in life, the little things that had defined your very existence.

Just like the "Bucket List" demonstrates a person's deep-seated desire to "conquer the world" in their last days, a person can also have a "Bucket List" that is full of the desire to do very ordinary, common, little things. Once the ability to do those things is taken away from you, those sky-diving, rocky mountain climbing and riding the bull moments mean NOTHING because all you long to do is to be able to get to the bathroom and back by yourself or to read a book to your child or to go to the grocery store by yourself and push the cart without a thought or care as to the physical cooperation of your body.

Oh yes my friends, for some, that "Bucket List" and those moments where you "Live Like You Were Dying" might be rather humble moments that you long to have back.

During a few serious health battles, as I've had more than my fair share of being stuck in bed or in a recliner, the boring little things that I'd taken forgranted were suddenly being done by someone else, and it dug into the core of my soul that I could not do my simple "mommy" chores.

I wanted to keep being the pro-active mommy I'd always been. I purposefully had my children very young because I wanted to be THAT mom who could keep up with everything the kids did while they were being raised.

Around 1990 - I am holding Stefanie.

And I had been THAT mommy who was strong and on top of the world. Our family lived a life full of biking, hiking, camping, traveling, exploring and being outdoors. We lived with me being the one who drove my kids back and forth to school every day because I dreaded the thought of them riding the bus (but my kids would sometimes BEG to have a "bus" day to be with their friends and it was okay). The Mommy-Ride was always first choice in our house. Those trips back and forth to school every day was literally what I called "Sacred Time" with my children.

I owned a successful business that brought in major money, yet allowed me to attend every school function held during school hours. I didn't miss a beat with my kids. I sacrificed and orchestrated my world around my children. I took my mommy-business very serious, and I certainly didn't want someone filling in for me in this very treasured life position. But, I had no choice because my body was so sick that I had no choice but to linger in bed until my body "recovered."

Stronger again, volunteering at a car wash for the team.
I basically was a contributing photographer for the
team for end-of-year publishing.

During much of this time, I was miserable, sad and mourning the loss of being able to do these seemingly insignificant things for my daughters and for my husband. My faith in God got me through those very "alone" moments, even when people were around me, I was clearly "alone" because my condition separated me from everyone. For so long, I was sad that all of them could walk out of the room and away from the devastation while I remained stuck with it, as time ticked by, I could not escape my newfound jello body.

Even better days were to come after several huge hurdles,
such as this day at a Texas A&M game as I get
to play with her hair again!

At first, we didn't know I would recover, in and out of the hospital I would go, but I began to slowly regain strength and abilities to allow me to do the sweetest, most precious things for my daughters and husband. However, a mommy is a caregiver of the most treasured things she'll ever have...her children. Regaining enough health and strength to resume some of these mommy-things had been my Live-Like-You-Were-Dying moments to savor. I didn't need a trophy, an award, or accolades; I didn't need to run a marathon or lift weights: I didn't need to jump out of an airplane...I just needed to sweep the floor and re-organize their toys and pick them up from school.

As soon as possible, often while pushing myself too far and too fast, I began to again do the things that an ordinary mommy or parent does for their child, especially after she is held back from doing them for too long. And if I hadn't LOVED doing those mundane, daily things during the years BEFORE life dictated a different way of living for me, I sure learned to LOVE them afterward.

My oldest, Heather, with me at a football game to watch
her younger sister (Stefie) perform awesome, sporting dance
moves at half-time.

In a way, I feel strangely blessed and privileged to have learned this lesson while very young. Yes, that is a blessing indeed, to learn to appreciate all that you have on a higher level, that is an amazing gift.

This is a photo of the time-frame when I was beginning
to fall ill due to Addison's disease. My oldest and very tall gal is actually
only about 13 years and my youngest is around 10 years old.

So, I am going to take the liberty to rewrite the beginning and with the opening chorus of this song, according to my own experience that maybe some of you may relate to during a huge change in life due to illness, injury or whatever has kept you down against your will. Indulge me...because I've already lived like I was dying, and I never missed NOT having the chance to ride Fumanchu.

She said I was in my early thirties,
with a lot of life before me,
when a moment came that stopped me on a dime.
I spent too many precious days,
in a cloudy and confused haze
while talkin about the options
and talkin about sweet time
I asked her when it sank in and
this might be the really real end
I said how's it hit ya
when you get that kinda news?
Man, what'd ya do?
and she said,

I missed mommy things,
To listen to my daughters sing,
I longed to make my child's school lunch,
To simply hug both kids a bunch,
And I pulled my kids closer,
Longed to be the mommy-boaster,
And to do normal things just like I used to do,
And she said some day I hope you get the chance,
to live life that's anew.

TO LIVE LIFE THAT'S ANEW!!

#99 - Changing Directions

Having to deal with Addison's disease for over ten years now has been a huge challenge. However, what made it more challenging was dealing with other medical disasters as Addison's dangers made things more tricky. Most people with this condition know that going through any surgery with Addison's adds a heightened level of risk.

Having a rather quick surgery for something routine is still scary, but I've had to face a few surgeries that are complicated, lengthy, high-risk surgeries within themselves and the Addison's disease only added to the surgeon's full plate to keep this patient alive.

One of my surgeries, in 2009, had followed the discovery of a spine injury and the collapse of my neck...three vertebrae had basically crumbled and this area of collapse had pressed completely in on my spinal cord so that only a pin sized amount of spinal fluid was seeping through. I had been having great difficulties for quite some time...had lost feeling in my arms and legs, began having trouble walking and the worst part was the sudden moments of not being able to breathe...not as if I were having lung problems, but it was as if my functioning part of my brain that sends signals to the lungs had been damaged and the in and out motion of breathing would go haywire while I struggled to not panic and to just breathe.

I'd gone to several doctors, went through pulmonary testing...no one could find out the source of the problem until one day I had an MRI. There it was...my spine was horribly distorted by the collapse and the spinal cord was severely compromised. In addition, I had developed a huge lesion on my C2 spinal cord area from the damage incurred. Things were scary. So, I had reconstruction surgery to build a new spine in this area and I am held together by plates and screws installed through the rebuilt cadaver bone --- from the front and the back of my neck.

But, the recovery would be long. I would never be the same, but the gasping for air moments were passing. After surgery, I had such horrible swelling in my neck, up to my face that I had many, many moments of not even being able to swallow my own saliva...now THAT is swelling. I had to wear a hard support neck brace for three months --- in Texas. This neck brace was partially made out of heavy plastic with metal bracing running through it. I say, if you want to develop more character, try wearing a bulky neck brace night and day as it presses in on the front stitches across your neck and as it hits the back of your neck full of staples. "Comfortable" is not a word that you will know, not for many months.

And the heat generated through your body when your neck is enclosed in a plastic contraption can make you feel as if you are being smothered. The fortitude it takes to not run for the hills as your neck flops back into a broken mess is a challenge in itself.

But, I handled it. I needed help only for a few short days, then I was back on my feet and it was difficult to keep me down. I even went to work two weeks after my surgery, like a crazy person. But, since I was self-employed, that meant I was accountable to myself and would not earn a living unless I got busy. I had a closing...my youngest daughter drove me to it and I had to tuck extra gauge at my front incision and back incision. beneath the neck brace, so I could be bought extra time before blood would start to show through...I looked a mighty fright, but did my best to assure my clients that it looked worse than it really was. Yeah, that was a lie. And considering that my client was a pastor of a local church, that lie was intended to put him at ease, so I hope the Lord understood.

After months of recovery, I had yet another huge medical hurdle with three more surgeries that would nearly put me in the ground permanently. But, most of all, I didn't know how I'd keep going through life with these constant battles knocking me back to the ground. Each time I tried to get up, it seemed another blast was heading my way and sending me through the ringer.

Soon, I realized that I just needed to stop everything I was doing and rest. Actually, my doctor told me that I was nuts to try to live a "normal" life because I needed to get out of denial and realize that my body was not normal and never would be. It was a brutal conversation. He told me to start saving my energy and abilities for the more important things in life. I listened. I was worn down. He knew it and confronted it.

I needed to let my body recover without trying to put in a day's work. I needed to focus on what I absolutely treasured instead of trying to chase my former ideals of productivity. For me, being productive had changed to mean being able to walk around the house in excruciating pain, especially after multiple surgeries followed the cervical spine reconstruction. Soon after, I found myself with my 10th rib removed along with a large mass. But, it would not be over.

So, I began to gather my strength by letting myself be more still. Relaxing is not what I would say that I was doing. Even if I were sitting, I would not be "relaxed." Due to my body being battered and altered and sliced and diced, I would find no relaxation any more and this was a good reason to seek rest whenever possible. The constant pain exhausted me. There was absolutely no position for me to find that would be comfortable. I could not sleep for more than two hours at a time. Life itself was draining me of life.

Still, I pushed onward. However, I quit driving around because it was too painful to get in and out of a vehicle. More painful than I could even express to my family. Getting dressed was painful because I hardly had any part of my body that "regular" clothes could touch without sending me to the moon. Everything changed. Everything.

I began to limit my outings. Rarely did I drive. I could not move freely enough to drive with confidence, so I quit ignoring my body and made the right adaptations. Then, because of my medical hurdles, my income came to a halt. And my family is very accustomed to my income producing contributions. My income makes all the "extras" in our lives a possibility. So, I began to "save money" by staying home as much as possible...not spending any extra money, not wanting to waste any gas whatsoever, especially in these economic times with gas prices being astronomical. I got a cheap haircut once every eight months and cut my hair myself in between. The tighter times became, the more I'd pull back, thinking it would make a difference and that it would at least reduce some pressure off of my husband. I've denied myself many basics in life because I felt it would add up to helping out the family, but I'm seeing that all I am doing is contributing to my decline at a time when my body is ready to soar!

However, I've recently realized that I am strong enough to have more regular outings. I can drive with more maneuverability because my body has healed to a higher level. And, I've found that the sacrificial withdrawal from life to save my family money has really not even been noticed as a contributing factor...it's not really even appreciated and that is okay. But, I've come to another changing moment in my life, I'm not quite ready to play dead while I'm still living. For so long, I didn't want to spend an extra dollar on myself because I was always on the edge of toppling over into the end of life, but now I see that I should not deny myself the privileges of living because I AM still living and I am living quite robustly. I don't have to go out and spend money, but I sure as heck don't have to live with sitting here in a house twiddling my thumbs because it has become EXPECTED of me.

Over the past six months, I've seen a change in my recovery to the point where I am regaining lost strength. This has been crucial in my healing. It makes sense that the next step to follow is that I've not been as complacent to sit at home and to wait for someone else to decide to take me on an outing. These things are up to ME. I've realized, recently, that I am strong enough to go out...to enjoy life outside of this home that has become my necessary confinement for MUCH TOO LONG and I am not waiting on anyone to catch up to me.

This past week, I've been reminded about some harsh truths...a recovery is not always a "recovery." You must find the point, especially after something devastating impacts your body, such as a spinal injury, to decide when the time is right for you to feel as if your brain and body are strong enough to support your desire to get moving. My spine is still in trouble, but I am no longer trying to appease anyone with my ridiculous sacrificial lifestyle of barely moving anywhere but inside this house. Those days are over.

However, I am fairly confident that many people who endure serious illness or injuries find themselves in similar situations. It takes a lot to get back out into regular life again and it will probably never be on the same level as it had once been...having to wait on your body to agree to do it is torturous, more than most people can ever understand, even my own spouse. Such complicated recoveries can be a lonely road, for the most part.

I may not have to go far from the house to simply get away and get out and get on with life, but I'm doing it. Sadly and joyfully, for good reasons, I'm no longer content to be here at home. I guess my returning strength hit a point where it snuck up on me, so now I am going to live it up and do all I can, for as long as I can!

And, my former thoughts of hoping that my morphing into a money saving wife and mother instead of seeing myself as a woman with lost abilities...that part of me is thankfully disappearing.

Still, I require very little. I've lived with so little for years that I'm accustomed to the simple life that most women would not dream of living. I feel stronger for it. My body dictated certain ways of life that were not free choices, but I adapted. However, now I am moving forward, wanting more independence, wanting more time out of the house to myself, for myself, and maybe this will free the husband who has times of being frustrated by my need for company and conversation. It's obvious that the pressure I put on him in all areas can be too much, especially if I talk about groceries...whew...that can be a tough one around here. So, I am backing off. Honey, never mind about the yogurt, the ham and the provolone cheese...it really wasn't that big of a deal!

I am a woman who is extremely accustomed to being told "no." Either by my body's limitations or by circumstances...I'm actually peaceful and accepting about it, unless someone uses it as a forum to be ugly.

Regardless, these little moments are integral to creating big change. I'm very social and since my body is cooperating more and more these days, I'm getting back to socializing outside of the house. It's a good feeling. A really good feeling.

This week, I've already had several very important outings to signify my return to the outside world. The first was to welcome Pfc Cody Norris back home after his tragic, yet honorable sacrifice at only 20 years of age while serving in Afghanistan. I went by myself, in pain as usual, to stand along the road with the flag waving community to show our support as Cody's body was brought home for burial. Being a part of a military family, this was devastating. Cody signified a person making the ultimate sacrifice and served to give me even more strength than I had thought possible. His life came to a sudden end in battle at an age much too young to find an end. I thought about my personal battles and how I've been given so many chances, even if my body is forever altered and will be in pain and without full feeling in my limbs, I am here.

Today, I am thankful that I have more physical strength to carry me through and I will continue living to the best of my ability...just more often in the outdoor world than here tucked inside a house that has closed in on me.

And, I welcome myself back!

#93 - My Heart is Touched

I've found myself to be living a beautiful life in spite of Addison's disease and other major hurdles with my health. I am not a person you would look at and suspect that there was even a problem. Being able to "fake it until I make it" has been my mantra which translates to...even when you don't feel well or when you are struggling, the best route to take is to rise above it and carry yourself as if you are without such problems.

The truth is, there are days when this philosophy won't work for me because I just can't rise above my given situation, but you can be guaranteed that I am trying to lift myself up and out of it. Embracing the "fake it until you make it" mindset has been a life-saver for me because if I give in to how I actually feel and submit to my set of circumstances instead of trying to temporarily leave it behind for a bit, I would be smothered and defeated by my challenges.

When we have a family gathering, I like to join in on the fun. I'm not one to sit back and watch. Yes, I hurt. My body has been sliced and diced and pulled apart and rebuilt and it is a definite hardship to act normal, but I do it. The simple ACT of being normal can actually provide a boost of healing and mental equalizing that is needed to keep moving forward. Depending on your situation, the little normal act may simply be to read a book or to sing out loud to a song you always loved or to have a conversation with a friend and have none of it be about you or your problems.

Sometimes, I long to get out of the house and do something mundane, such as go to the grocery store. Even better, I love a leisurely trip to the library or to take a long walk in the park with my walking stick in hand. I like to go to the beach and look for shells. On our property, I have such a great time in the creek looking for beautiful stones. If I can swing a night out to see a live theater performance, then I am transported away from my aches and pains for a brief time...I refuse to allow the uncomfortable seats with my reconstructed spine discomforts to get in my way of enjoying the performance. This requires focus. I've worked hard to keep my mind headed in the direction I prefer, and let me tell you, for a person who has plenty of painful distractions, it is not an easy task.

One thing that I love to research and focus on are the triumphs and challenges that other people have worked to overcome, and I'm thankful they share their stories with us. Like my momma would say, "Someone else always has it worse." I look at the circumstances of people who rise above their misfortunes and I am given a boost to keep doing the same.

This week, I was going through old magazines in the house...cutting out decorating ideas, simple recipes I'd like to try and things I would want to remember. So, I was browsing through a February 2007 issue of Woman's Day magazine and I came across Ginger Zimmerman of New York. I read the short article next to her standing in a beautiful red dress representative of women making a stand against heart disease. I was stunned by her circumstances. If anyone can rise out of their circumstances and move forward in life through hardship, this woman teaches us that we can indeed do this.

Photo from Gingersheart.com website.

After reading this short article and cutting out the page with her story, I began to research her further and my admiration and amazement at all this woman went through is another gentle form of encouragement for me to keep moving forward in my own battle.

Ginger, a young woman of about 29 years of age had a beautiful life. She lived happily with her husband, David, who worked as an offshore oil surveyor in the Gulf of Mexico and they had three beautiful sons who were 13, 9 and 4 years old.

In 1993, at the young age of 29, Ginger began having chest pains and shortness of breath after simply walking across a room. Daily life had become a struggle. But a diagnosis would not come quick for Ginger. She, the same as in my situation, suffered needlessly because her physicians could not get past their "youth discrimination" barriers. I was amazed that she experienced the same thing I did...she experienced doctors who could not imagine anything being truly wrong with a woman who appeared rather healthy. It is difficult for a medical community to HEAR a young, vibrant woman describing her ailments when all they can focus on is her age and how she doesn't appear "sick" enough to warrant them thinking out of the box.

Doctors would tell Ginger that the extreme exhaustion she felt was due to a thyroid condition, which was an easy answer, and she was even labeled a hypochondriac. But, these answers were certainly not sufficient. In my case, I discovered that even though I had been suffering long-term and had been extremely pro-active in trying to get an answer from numerous doctors, I was facing a losing battle because too many doctors were incapable of listening to my symptoms, they even disregarded my carefully written lists that described my symptoms...most doctors were simply unable to go beyond their own limited mindsets that are more apt to label a young woman with an unknown illness as "stressed out" or a "hypochondriac." However, I was stunned to read that Ginger had tried for nearly four years to find answers as to why she was deteriorating. She knew something was wrong. Of course she knew something was wrong, but getting a doctor to listen to her and take her seriously enough to take pro-active diagnostic action would be the greatest challenge of all.

I was greatly saddened to read her story and to know that our battles to be diagnosed were so similar. It took me going into a code in the hospital before my treating medical team of the moment really got it...I knew what I had been talking about, I had been in the process of dying. It is always hard to hear of other people who had been seriously ill and suffered on top of it as they were misdiagnosed or shoved aside by ignorant physicians with crass attitudes.

No one took her seriously until it was nearly too late and she was dying, then they discovered that her heart was working at only 15% capacity. I can only imagine the shock, horror, and fear that she must have felt after learning that she needed a heart transplant. Living in the hospital, she had to be hopeful and patient for 3 1/2 months while waiting for a donor. This waiting time had to be agony because a heart transplant was her only hope for survival.

After the donor heart was found, her husband's company arranged to have a helicopter fly him to shore so he could rush to the hospital to be with his wife before she was taken into surgery for her heart transplant. He nearly missed seeing her before the surgery because his helicopter had been forced to make an emergency crash landing in the water. I can only imagine the sense of urgency and panic of the helicopter crew as they were going down, especially because they were trying to get this husband to his wife before she was sent in for her heart transplant. But, by some miracle, he survived the crash landing and he made it to the hospital as they were rolling her out into the hallway for the surgery. In the midst of her being wheeled into surgery, he was telling everyone that he was so lucky to be alive and told them about the crash...the reason for him running late and arriving at the very last minute. He got to be with his beloved wife before she went into surgery.

With a headache, David was able to see his wife before and after the surgery. I'm sure he was worried sick about his wife, probably hoping and praying that she'd survive so they could have another chance together. I'm sure he'd missed having his wife at home...she'd been in the hospital for months.

In an interview, Ginger says, "Little did he know that he'd actually suffered an impact tear to a small artery in his brain that would prove to be inoperable and it actually took his life nine days later."

Ginger had been able to speak with him one last time before he died as he was still at home, but about to head to the hospital in obvious serious condition...she had phoned him and could tell right away by his voice that something was really wrong. Ginger's niece, who lived nearby, rushed over to check on him and found that his eyes were dilated, his tongue was to one side she knew she needed to get him to the hospital. On the phone with Ginger, she relayed his condition and said there wasn't even time for an ambulance, so her niece quickly put the phone to David's ear for Ginger to tell him that she loved him for the last time.

Later, they would discover that her husband's impact tear, even if it had been discovered immediately after the crash, would not have been operable and they would have been forced to tell him that he would die. So, it makes you contemplate the series of events...as if angels were watching over him and buying him borrowed time so he could be with his wife during such trying times. Maybe it's best that he didn't know he was dying and that she didn't know he was dying...perhaps the few moments they had left together would have been filled with despair instead of hope. Maybe the not-knowing was actually a hard to understand gift.

Stunned, I continued to learn more about her incredible story. In the magazine article, it saddened me to read her words, "I had a new heart only to have it broken."

After her husband's death, in the same hospital that had given her life, she had arranged to have David's organs donated. And as she was recovering from her own heart transplant, her husband's heart was transplanted into a father of three children, in the same hospital.

The ironies in this story are incredible. Her healthy husband died unexpectedly as she lay in the hospital after knowing that her only dying chance was a high-risk heart transplant. Her husband was consumed with being by her side through the worst, as he was dying himself.

Ginger Zimmerman is now a speaker with the American Heart Association. In an interview, she said something that women especially need to know, something simple, yet powerful, she said, "You live with your body every day, you know if it's not working right." So do not doubt yourself. If you KNOW something is wrong, then be blunt and tell the next doctor that you need for them to not brush you off or to blame their lack of knowledge on something mundane...they need to find out what is wrong. They need to put on their medical detective hat and get to work, even if that means employing the process of elimination.

Anyway, Ginger's personal story has touched my own heart. Her battles must have been seemingly insurmountable. The children's pain of suddenly losing their pillar of strength, their father, and then having a mother with such serious medical problems must have been devastating for them. This family has been through an amazing ordeal and I am encouraged by Ginger's determination to live as healthy and as fully as she can, in spite of ongoing challenges. I feel blessed to know her story.