#147 - Addison's Crisis Scare

This Thanksgiving I was making the trip into Houston by myself since my husband was having to work. The excitement over the pending trip to my Uncle and Aunt's new home in a beautiful part of Houston was thrilling because it was also their home-warming party.

The trip takes over one hour, one way, mostly down Highway 59. It's actually a pleasant trip.

However, the past few months have been very challenging due to massive amounts of blood in my urine and lots of testing to figure out what is causing the bleeding. Since my father had bladder cancer, frankly, I was scared of it being cancer. I think this fear or thought in the back of the mind is natural for any child of a parent who has battled cancer or died from cancer that is found to be "genetic."

So, I have gone through testing during the past few weeks that range from ultrasounds, bloodwork, a CTscan with and without contrast, along with the procedure of bladder scoping.

A diagnosis I got about a year ago, and that I had hoped would somehow find "healing," was that my uterus has become so incredibly enlarged that it is literally "smothering" my bladder and grating against it, injuring it. Additionally, it is causing pressure against my lower spine, which is one of the most painful elements to this problem. Then, on some days, I suddenly have serious vaginal bleeding with huge clots that are very painful to pass because the uterus is not doing well; this is not a "normal" menstrual cycle, but further sign of things going wrong.

I have been on Depo-Provera injection for quite some time, which has kept the cycles away and that is good because I am in extreme agony with enough blood loss to create anemia during a "normal" cycle. Endometriosis has also been a life-long condition that causes tremendous suffering and has aggravated this situation.

Needless to say, between the bladder reacting as if sandpaper is rubbing against it, the ureters being stretched and contorted outward as if they are rubber bands pulled to their limits and the other internal pressure creating abnormal consequences, I am in considerable pain, especially after I am on my feet too much or moving around too much.

In spite of the pain, I still traveled a few weeks ago to be with my youngest daughter, Stefanie, as she was inducted into an Honor Society for her Master's Degree that she's almost completed. Even after that trip, my situation went further downhill and my urine became full of blood, all day, every day.

So, in an attempt to get in control of the pain, lately, I have been "resting" as much as possible, and this is also what the surgeon ordered because a horrible nightmare can occur to make this bad situation worse. My doctor said my bladder is actually in danger of prolapsing through the vagina from the intense pressure of the uterus bearing down upon it.

Whaaaaa?????

Well, I am 46 years old and don't relish the prospect of "Hey, my bladder is coming out of my vagina" kind of moment. So, the Urologist sent me directly to a highly recommended OB/GYN who confirmed that my uterus is now equal to the size of a four month pregnancy with it being full of tumors, a minimum of three tumors, believed to be fibroid. The tumors are very large...one on the left side of my uterus is so large that it can be felt simply by pressing upon my abdomen. My entire uterus can be felt with bare hands as it explores the abdominal swelling. As I lie down, you can see the swollen uterus and the lopsided swelling on the left...but this is not like the days when I was pregnant with my babies...this is mentally and emotionally disturbing as well as physically painful.

For those who don't know about this stuff, a woman can often have their uterus removed during surgery, through the vagina, to cause less bodily damage. However, I was told that the uterus is so large that this kind of surgery is no longer possible.

That is pretty serious for me because I already went through a supposed simplistic gallbladder removal in 2009 that led to massive complications...my 10th rib needed to then be removed to surgically access a large mass of scar tissue that was the size of a softball due to the gallbladder removal. Then, we soon realized that the abdominal wall did not stay surgically closed from the rib removal, so a third surgery was needed to keep my guts inside my abdominal cavity.

St. Luke's Episcopal Hospital in Houston performed a 10x16 spine-tissue transplant because the abdominal wall was not healing/closing after the rib removal incision and mass removal that left a quite large incision stapled shut, and it didn't work. Surgeons suspected steroid treatment for Addison's as the source that was hindering my surgical healing process.

But, what happens when an Addison's patient needs surgery? They need MORE steroids for stress dosing, for survival. It's a vicious cycle. These three surgeries were within about three months of each other and every subsequent surgery required that the surgeons go BACK through the SAME surgical opening, each time making it larger, more painful, and even more traumatic.

I have had several major surgeries and am so grateful to have SURVIVED each one of them, but the Addison's makes things much more dangerous. That is the harsh truth is that our Addison's condition increases the chance of complications.

After all the surgeries I have needed and that have served to keep me alive, I have found the surgery itself is not so scary, but the COMPLICATIONS can be terrifying. It is especially critical to have a surgeon who provides responsible, excellent post-operative care to make sure their surgical effort are a true success.

Now...all the backstory is to lead back up to Thanksgiving Day.

Since I have been facing major issues with pain, infection, and inflammation, I have been forced to do more stress-dosing over the past few months. My blood pressure has been extremely erratic. One day it will soar and the next day it will bottom out. Keeping it stable has been a Fairy Tale for quite a long while because of the stress, swelling and infection the enlarged uterus has caused.

So, on the Thanksgiving morning, I kissed my husband goodbye as he left for work, then I checked my blood pressure again, it was on the high end, about 140/98, so I continued to get ready for my Thanksgiving day with family in Houston...about 90 miles from our home. Packing my three pies with whipped topping, I also decided to bring along my wrist-blood-pressure cuff to monitor my blood pressure for the day, so I could take any needed medicine to keep things under control. I wasn't feeling just "right," but that has been going on for quite some time; not feeling "right" is my normal for the time being, so I just kept going on auto-pilot and soon got in the organized car to leave our home in the forest for downtown Houston.

Within ten minutes of being on the road, I began to feel severe dips in my blood pressure. I put the cuff on my wrist and began checking my blood pressure and was shocked to see it sink from 140/98 to 86/52 in less than five minutes time. I had ALREADY taken a stress dose, but I pulled out my medicine container that I always keep with me and began my routine of taking 20-30 mg of Hydrocortisone, but this time, I decided to take 50 mg because the dip had been so rapid and severe. Then, my experience became one of the scariest that I have had since being diagnosed with Addison's in 2001...I developed extreme brain-fog in the few minutes this all happened, while driving down Highway 59 toward Houston.

The rest of the events are shrouded in a thick mental fog that comes with a person's blood pressure sinking so low that oxygen to the brain is seriously reduced.

I either called or texted my husband with the message of, "Call me" as I was searching for a place to pull over to the right. Obsessively, I kept thinking, "Pull over to the right...stay right." I knew I needed to immediately let him know I was in trouble, even though Sgt. Dave was over an hour away, at work already. Turning around wasn't an option...I didn't have the thinking-power to even move out of the right lane. My husband called, I had him on speaker phone and tried to tell him that I was in trouble and trying to pull off the road, to the right.

Since I was on the highway through a rural area, I was terrified at being stuck somewhere "off the map" as I physically plummeted. My husband's voice was panicked, yet stern as he ordered me to, "Turn around! You are having a crisis and are slurring!"

All I could think was, "I can't even FIGURE OUT HOW to turn around...I will stay on this edge, and go slow until I can PULL OVER AND STOP in a SAFE SPOT."

With the little bit of brain power I had left, I felt the panic mounting inside of me. There was nowhere to pull off the road safely. Somehow, I KNEW to NOT STOP in the break-down lane; I wasn't even sure I would stay in the car or not stumble as things deteriorated as I lacked coherent ability to make decisions that were need to prevent me from being ran over by a big rig.

Of course, I continued to hit the button on my blood pressure cuff, which while on the phone with Sgt. Dave gave the next reading of 77/42, and I realized the search to find a safe zone in the middle of NOTHING was urgent. All of this happened within about a five minute time-frame, but it felt like an ETERNITY. I kept swallowing more HC pills as stress dosing and knew I was past the point of being able to self-inject, I was too weak and too far from being mentally aware enough to prepare and give an injection.

I then recall my car hitting the hard ridges that are built into road and realized I had been losing consciousness, and that's when I spotted a big sign in the sky that said, "Love's Truck Stop." The hard ridges jerked me out of my lack of consciousness...yes, the ridges work, and I felt as so relieved that a safe place was within sight! However, still on Highway 59, I prepared to turn right, off the highway as I waged a battle to keep looking in my mirrors to make sure no one was driving any where around me. I HAD to get off the road; I could NOT hurt anyone because of the sudden onset of an Addison's crisis. If I did cause someone to be hurt as I became sicker, I would not be able to live with myself.

How could this happen? How come there weren't more warning signs that could have prevented such an extremely rapid deterioration in my vitals? How come this had to happen while driving down a isolated stretch of Highway 59 as I was alone?

At this point, I was FIGHTING to stay conscious and had literally gobbled a HAND-FULL of steroids, which by the end of the day would total over 200 mg of Hydrocortisone, the most I have ever had to take in one day, and still, my blood pressure kept sinking.

With a bobbling head and eyes that were trying to refuse to stay open and taking great effort to see, I managed to pull into the truck stop parking lot. I pulled against the nearest curb, turned off the car (I think) as the phone lay on the console with the speaker phone still relaying the voice of my husband. I finally spoke, trying to tell him with a thick, uncontrollable tongue, that I was parked at Love's truck stop and was going to lie my head back and just rest a while.

I was wise enough to know I needed to obey my body.

Sgt. Dave was furious, but I did not have the ability to be concerned about his own panic as he hung up on me for being so angry that I wasn't doing what he wanted me to do. Frankly, his tantrum was not my concern, I had bigger things to worry about. With him off the phone, I had one less problem and could focus on myself...trying to figure this out.

The last thing I remember at that time was reaching to hit my door locks, not realizing the doors were already locked, I looked up to see the huge "Love's Truck Stop" sign directly over my front windshield and I actually giggled weakly while praying, "God, please don't let this be my last sight."

And I literally fell unconscious.

The shocking part to this was that once I regained consciousness, over 45 minutes had passed. I could not believe it. I don't even remember really if the car was turned off or still running. Being able to park was good enough for me.

I took my blood pressure and it was now 90/58. Better. But, best of all, I WOKE UP. I was ALIVE!

Taking MORE Hydrocortisone, I decided that my body must have been processing all the pills I had swallowed as I lie there unconscious, and they were finally working their way through my system. I considered going back home, but as my blood pressure continued to rise, I knew that I would return home to simply find myself with decent blood pressure as the worst had passed, and my determination to move forward was full of stubbornness.

My blood pressure went to about 110/78 and it held for about twenty minutes, so I decided to go on with my life. I also knew that after all the massive doses of Hydrocortisone had been taken, that I might have some high blood pressure, but that never happened.

Of course, everyone began eating Thanksgiving dinner because my little truck stop detour and my slowed pace added nearly two hours to my travel time. That was depressing to me because things went so wrong, then I began to realize that things actually went right...God helped me to be safe, for others to be safe, and for me to make it to a place that was not too scary to sit in my car alone while extremely vulnerable. I never expected to lose consciousness.

The drive within me to get to the Thanksgiving gathering was powerful. I was going to see both of my daughters, my son-in-law, and my grand-daughter among all the other family members I love so dearly.

My Uncle Billy, daughter Heather and grand-daughter, Coraline.
My sister is in the background looking like a super model!

Then, I was getting to see my Aunt and Uncle and their lovely new home, and my cousins I hadn't seen in well over ten years.

My beautiful sister, Robin, and my cousin, David.
When we are together, I still feel as if we are kids!

The first few miles back on the road were "test" miles, to make sure I was fully alert and capable of driving safely. I felt a life-time better, but I knew things were not right in my body, and I suspected the wild fluctuations to be directly related to my condition causing too much stress upon my body.

Stefie is giving me a sweet smile and my niece Shaye is
growing up too fast!

Also, I contemplated the reasoning for my meds taken in large doses for not kicking in as fast to get my blood pressure to an acceptable "low" range was explored. Obviously, my body was not absorbing the meds as it should have. That concerned me. One way to approach this problem, I believe, is to make sure I do not find myself without a ready-snack to take with the medications to help absorption. Usually, I have peanut butter crackers with me, but this time, I was out of luck and even though I was SO CLOSE to the truck stop shop, I was far too weak to try going inside. From now on, I will at least make myself a snack pack of Ritz Crackers with peanut butter before I get on the road.

I felt weak for the rest of the day, but everything was okay, other than my pride being wounded.

Determined to keep going, I had a wonderful time with my family, especially with my uncle who was justly proud to show off his AMAZING shop where he does woodworking projects above and beyond the norm.

I had so much fun. The two of us spent about an hour in his shop as I got the grand tour.

Since I took Shop in school, I really loved this experience.

My uncle is such an amazing man; it is wonderful to see him living a life of excellence and luxury.

My Uncle Billy's CNC machine - remarkable!

The downstairs part of his woodshop - tool zone.

He's also a perfectionist, which is evident as you see his two-story shop setup.

So, I got to spend my Thanksgiving going from being unconscious at a truck-stop to a family home that is worth well over a million dollars. Then I was blessed to get home safe after the festivities. It was quite a memorable day.

The day after Thanksgiving, the reality of the previous day hit me hard. I realized that my condition is more precarious than I had wanted to admit. Yes, I know it isn't good because of the level of pain and bleeding from a couple of places in my body that this causes, but I am accustomed to moving past the pains in life as much as possible or be controlled by it.

Still, I acknowledged that my health, especially the Addison's, is not stable. At least, not for now, especially due to the excessive pain my body is processing. After I have the surgery and get the uterus removed, I believe things will become more manageable. Until then, I am going to try to avoid lengthy car trips. But, I savor the time I had with family, especially with my Aunt Sheila.

Aunt Sheila...a woman who is easy to love and who loves her
family so easily.

On December 4th, I will have a final test conducted to determine a couple of other things for the surgeon to develop a surgical strategy. On that same day, we meet with the surgeon to discuss the details and to learn my surgery date; she already told me that it would go fast after the Thanksgiving holidays.

I am thankful that God put me under a sign of "Love" during one of the most difficult and scary times of my life with Addison's. I just never thought the love would be associated with a truck-stop in Texas. I will never see that truck-stop in the same way again...it has earned a special place in my heart.

# 146 - Is it the Addison's?

Having a disease, such as Addison's makes it extremely difficult to determine whether or not some health issues are being caused by Addison's or by another problem.

On and off this year, at the least, I have had constant battles with my kidneys. As I get into a significant kidney infection, I seem to get more than the back pain at the flanks, I also get a terrible body aching that cannot be described. It seems that the body aches are signifying that my body is not cleansing the toxins out of the system as it should because the kidneys are impaired.

Last week, after feeling miserable for a good amount of time, I again go to the doctor and discover that I have an "massive amount" of blood in my urine.

Right now, I am struggling because the infection or whatever is causing the kidney problems is now creating Addison's maintenance issues.

I cannot imagine that Addison's would cause my body to hurt this bad, pretty much 24/7. It does seem that something above and beyond Addison's is at serious play in my system. The massive amounts of blood in my urine are an indicator that my suspicion is true.

Unfortunately, the doctor here in Livingston has a staff that is consistently lagging behind in sending the doctor's orders to the diagnostic location...it took a total of five days for the doctor's office to even fax the doctor's orders for the ultrasound to the location that does the test. So, I could not even schedule the ultrasound since I was waiting for the doctor's office to do their part. I believe I will go see the doctor to simply discuss this issue with her, to bring it to her attention, especially since it is not the first time this has happened.

It disturbs me because the doctor ordered the ultrasound as a STAT test. Since the antibiotics that I began taking five days ago, directly after the doctor's appointment, has not helped at all...I am concerned.

For anyone who deals with any chronic medical issues, I am sure you understand that going to the doctor becomes drudgery. The THOUGHT of going to the doctor is highly bothersome to me, usually because I only go when things have become serious. I'm definitely not one to run to the doctor, unless there is a real problem.

And, right now, I've got a real problem on my hands.

I suppose that a few tests will help to rule out a blockage and then I will be also seeing a urologist to determine if there are other issues, but I feel as if things are dragging along. And I am in agony, to be honest, pure agony.

Today, I've been a ragdoll. Getting much out of me today is almost impossible. I've been trying to rest because the next few days are going to be jam-packed.

Tomorrow, I drive nearly two hours into the Bayside of Houston to stay the night with my sister so we can drive together to be with my dad the next morning since he will be having a stint put into his carotid artery for an 80% blockage they just discovered. He is acting as if it will be no big deal, but I get my stoicism from him in that he also doesn't go to the doctor until there is a clear and present issue that is not disappearing and is likely a real problem.

I am concerned for him...we will be there for him and ready to help him out so he can get home and resting. However, any time an artery is involved, there is added concern. I have had my share of surgeries, some directly involving arteries and others with the main goal of avoiding arteries at all costs. I just don't like having to deal with an artery or the spinal cord.

With my oldest daughter, Heather, at a party for a family friend
who just returned from duty in Afghanistan and my dad is giving
his great-grandbaby Coraline a kiss. She is a PawPaw gal!

However, I am so happy they discovered the blockage...it is very serious. I am praying the stint will be successful.

A wonderful motivator for me to cling to tomorrow is that it is my oldest daughter's 27th birthday! I cannot believe Heather is going to be 27!

Heather and Coraline...two sweet beauties!

I was 19 years old when I gave birth to her while living in Germany, and it seems like yesterday while also seeming, simultaneously, like a thousand years ago! I have been so blessed to see her grow to be a beautiful young woman and to have her give me my first grand-baby, Coraline. My son-in-law, Henry, is a good-hearted young man...my first "legal" son! These happenings keep me filled with joy in spite of hurdles.

Henry and my grand-baby, Coraline. I love both of them!



Then, I have great news...my youngest daughter is being inducted to the National Honor Society for graduates. She is getting her Master's Degree and will be having a ceremony this Sunday. Since she lives a few hours away and since her dad works weird days and weird hours, I will be traveling by myself to be with her for a couple of days and to attend the ceremony.

Stefanie on the day she earned her bachelor's degree from Texas State and
dunked herself with her class ring into the river! I took this photo as some
family members tried to talk her out of going through with this tradition,
and she is brave...SHE JUMPED IN THE RIVER! A priceless moment!

I am super excited about this event, but my body is struggling so much these past few months...at least I know the reason. We cannot be peeing huge amounts of blood without there being a serious problem present.

For now, I am simply trying to hang in there, but it is difficult. I would even consider going straight to the hospital to get better faster than later, especially since it is taking a toll on my Addison's maintenance. However, it seems that hospitals have such serious bacteria and other issues that I feel better at avoiding them at MOST all costs!

The private road down our acreage...too long with curves to photograph
its entire length, which is over a foot-ball field, but it makes for a
beautiful walk with the dogs.

Even with the agony I am experiencing, yesterday I went for a walk and made dinner and took care of home business, but today...RAGDOLL.

About a month ago, me with my first Grand-baby, Coraline.

Right now, my husband is being supportive. He knows I am suffering and he hates leaving me alone, but life dictates that I be a big girl! I assured him that the kidney pain is indeed a pain, but I am not in a state of disrepair as serious as is an Addisonian Crisis, so he needs to keep doing his normal thing and stick to his work schedule because next week might be a different story.

After all, I have so much going on around me that I can't hardly stop to think about my own situation; if the pain weren't so constant and intense, I would be completely distracted!

I am hoping next week will be better than this week. I always have hope...it will never come to an end, even at the end!

NOW, GO CONQUER!

# 144 - Living Life!

First of all, I sincerely thank all of you who have been sending concerned emails about my lack of writing for this blog. I appreciate you reading and digesting my written words, for whatever they are worth.

In response, I am going to make a sincere effort to begin writing again on this blog, on a regular basis.

To be honest, I had to focus on other areas in my life because Addison's disease can tangle you in a web of challenges. For a while, I felt worn down and needed to escape from it, as much as I could, for a bit.

Also, we made a major move from the city to the country, selling our house that was about 3,000 square feet to move to the acreage we've owned since our daughters were young. The acreage is in the middle of rural Texas country.

I took this picture yesterday...I love the "yard."

We bought a Mac-Daddy RV to live in while we prepared the land to build a cabin. The problem is that I can't decide upon where to build the cabin. You can't change your mind once it is built, so I am taking my time with this decision.

Sgt. Dave using a machete to thin the area that will be
next to the cabin.

I enjoy the RV, but it's an RV. I figured it would take about a year to start building, and we have accomplished a great deal, but I am ready for the extended camping trip to approach an end.

I must say, this has been one of the most adventurous times of my life.

My niece, Shaye, on a visit with her cowboy boots.
She fits right in with our new environment.

My newest health battle has been news that I need a hysterectomy. Not such a big deal for a healthy patient, except that surgery always presents a reason for concern, especially when it is YOU having surgery. For a patient with Addison's disease, the most simplistic surgery is serious business. 

Since my mother died from breast cancer at 57 years of age and my father is again battling cancer that is genetic, I need to be pro-active with my health. After my dad's genetic testing, the oncologist told him to inform all three of us kids about the results so we could take preventative measures of our own.

Presently, my dad is battling Malignant Fibrous Histiocytoma. My mother had been tested by M.D. Anderson and the cancer was not a genetic variation, but my dad's genetic testing made him very sad. Of course, all of us have something awry in our body, whether we are aware of it, or not. But, since my father is adopted and never knew his birth family, the lack of medical history is problematic.

Here I am with my first grand-baby, Coraline and my grandmother.
My grand-mother is now a great-great-grandmother to Coraline.
In the back is my Uncle Billy, my oldest daughter - Heather, and
my father who is having to wear a medical mask that he pulled
down for this photo. That baby makes him a first time great-
grand-father. I treasure these moments.

After considering my parents' cancer history, my doctor order the Brach-Analysis test for me. I took the test a few weeks ago, and I have been waiting a long time for the results. Of course, the chain reaction of such results is both nerve-wracking and beneficial. I have two daughters, so if I show the gene for these familial cancers, then I will have to inform my daughters of their high-risk predisposition for cancer, as well as my sister.

A few weeks ago, here we are in Fort Worth. There's my daughter
Heather, me, my sister Robin, my youngest daughter Stefanie
and my youngest niece Shaye. We had a ball!

As for the needed hysterectomy, if I show a genetic predisposition for cancer, then the surgeon is likely to remove as much as possible during the hysterectomy to reduce my risk, especially since I have tumors in the uterus and in an ovary, most likely benign, but this area needs attention because the tumors have become large enough to create visible abdominal swelling, and according to my doctor, the swelling is equivalent to an early pregnancy belly.

We all have problems, but I don't like this new challenge. The health battles have been enormous and never-ending. It becomes tiring. However, I keep fighting back and doing all I can to see better days. But, let me get this straight, I still have INCREDIBLE days.

My brother, dad, me and my sister.
This was taken the week after Christmas.

Overall, I will most certainly feel better after surgery since the complications of this condition cause significant pain, swelling, and constant bleeding that leads to anemia. 

Anyway, I never stop LIVING. Life is to be LIVED! I break my days down into "moments." I might have bad "moments" in the morning, but the afternoon might be filled with GREAT "moments" and find me feeling great! So, I never say, "My day is ruined," or "This has been a bad day," because rarely is there a day without goodness. Besides, there is always something you can find to do that is enjoyable, even if your body is not cooperating fully.

Here I am playing the piano...something I love to do and that
gives me a sense of fulfillment, yet it takes little energy.

My quality of life is improved because of the move out of the city. It's been a challenge with MAJOR changes to our daily lives, but I savor this life on our rural acreage.

Taking a walk through the woods.

Going from the Greater Houston area to a home with no neighbors in sight is a big change. So many of our family and friends have been baffled by this deep desire to live in the country, especially with my health issues, but I am not a person who lets fear rule my days. If I am going to be sitting at home on a regular basis, I'd rather do that sitting in an environment that is soothing and fun.

Of course, I'm not able to get outside every day, but the time I am outdoors is filled with wonderful fun that feeds my spirit!

Yesterday, I planted seeds in pots so they can get a head-start for transplanting into the main vegetable garden. I played outside with the dogs, throwing the ball too many times to count. I hand-spread Rye seed over approximately three acres of land, and I enjoyed every step I took.

Every day is a new adventure. Granted, I might not feel too adventurous each day, but the adventure is eagerly waiting for me outside my front door, and that makes me feel great! For me, being in nature is my calling...it's free, it's beautiful, and it's ever-changing. Also, nature responds to our treatment...when nurtured, it gives you gifts, such as flowers or veggies.

All around me, I see and feel God's presence. I think that God is gracious to give us such free beauty to remind us that all things have a cycle...nothing stays the same. That proof can provide hope in every situation.

More than ever, I appreciate the forest, especially because of the extra stress in life.
So, I will again try to share both the good and the bad of life, which includes living compatibly with Addison's disease.

# 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! :-)

# 135 - Being Steamrolled

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

Sometimes we can feel as if life is steamrolling us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

# 133 - Super Bug --- WHAT THE HECK?

This past weekend, reading online news updates gave me a shocker.. I was skimming an article with a leisurely attitude, yet with a tad bit of wariness, because the article was about a "Super Bug." First, as I read, I felt a tad bit of relief that the location of the Super Bug outbreak is quite a distance from Texas, not that our state-line boundaries would protect any of us with today's high transportation level, but frankly, the distance was one of my first thoughts of self-protection. Then, with more reading, I felt so bad for the little boy in the article who had obviously been battling massive health issues, only to be randomly hit with this Super Bug. I stopped reading for a moment to consider the unfairness of life, poor child.

Then, my attention sharpened along with a slight ringing in my head as the name for the Super Bug jumped at me. Klebsiella Pneumoniae (KPC). This is the very diagnosis that I had been given a couple of months ago, it had been found after direct testing of my bladder, and it is still an ongoing battle.

It would seem that the location of this bug in your body is critical, but after reading the below article, I wondered if I should be a little freaked about about my own tests confirming I have Klebsiella Pneumoniae. Needless to say, this article prompted my jaw to hang open a tad. Is my version of it contagious?

Indeed, I had been told that this would be an uphill battle for me, especially since my immune system is suppressed due to having Addison's disease and due to the treatment for Addison's being steroids, which hampers healing. No one mentioned that I might be contagious or even wanted to discuss it further, other than the doctor's office calling me to give me the diagnosis. I had to tell the nurse to hold on a second, this long weird word needed a pen and paper to make it more understandable. As the nurse said each letter so I could spell out the words, I could not even understand what she was telling me. I'd never seen those words before. And no, I was not impressed with this doctor's office handling of the matter. She pushed me back to my Internal Medicine doctor and told HIM to treat this diagnosis. So sweet.

But, I do know that if this germ hits the lungs, then death is mostly likely to occur. I am still very confused about this germ/bacteria and how it could be in my body, isolated to one area? If you know of any answers, please share.

There is no doubt that I will be calling my doctor tomorrow to find out more about my own situation. I certainly need to pin down the facts about the potential for this germ to spread. In my situation, the initial explanation is that it is contained within my body. But, after reading this article, I will not take a brush-off answer, I want details because my oldest daughter is getting married in October and I want to know exactly what I have been dealing with. I will probably go back and be retested...as unpleasant as that had been, I will do whatever is necessary to combat this Super Bug. In fact, I will probably stick with Baylor Medical Center that I have recently found to be excellent at replacing my other doctors and have them do their own tests and treatments, as they see fit to combat my own KPC.

The article I read over the weekend, released via Yahoo online news, is posted below...

***************

Superbug kills 7th person at Md. NIH hospital

Associated Press – 8 hrs ago

BETHESDA, Md. (AP) — A deadly germ untreatable by most antibiotics has killed a seventh person at the National Institutes of Health Clinical Center in Maryland.

The Washington Post (http://wapo.st/OPQOYb) reported the death Friday. NIH officials told the paper that the boy from Minnesota died Sept. 7. NIH says the boy arrived at the research hospital in Bethesda in April and was being treated for complications from a bone marrow transplant when he contracted the bug.

He was the 19th patient at the hospital to contract an antibiotic-resistant strain of KPC, or Klebsiella pneumoniae. The outbreak stemmed from a single patient carrying the superbug who arrived at the hospital last summer.

The paper reported the Minnesota boy's case marked the first new infection of this superbug at NIH since January.

# 130 - Life Ripples

Throughout the past decade and beyond, there have been times in my life when I have been forced to accept the help of others on a level I never dreamed I would need while still so young, in my early thirties. In 2001, after my diagnosis of Addison's disease that came after a serious decline, there was a time frame when I needed others to help with almost every aspect of my life.

There was a period of time when I could not drive, could not cook, could not clean, could hardly walk, could not do my children's laundry...my body had become so depleted of cortisol that it was crashing and my blood pressure remained so low as to barely sustain life. Without a diagnosis, I did not have the medications necessary to treat this life-threatening condition. In fact, I went so long without diagnosis or treatment that my organs began to fail. Going from doctor to doctor did not help because they thought I appeared healthy and strong, but my vitals definitely showed multiple issues that continually remained charted as "chronic low blood pressure," and "fever of unknown origin," and "sodium deficiency," and "potassium deficiency." In those days, as my condition remained a mystery, my body functions deteriorated so far that I could barely move without losing consciousness. Then, I began to experience Code Blue situations. Of course, at the time, I did not know they were Code Blue moments, but I soon learned the awful truth of my situation.

I dreaded going to sleep because too many times I would awaken without the ability to breathe...my lungs would somehow be paralyzed and without air. I remember awakening in a panic after realizing I could not breathe, as if someone had control of a switch for air in the room and it had been flipped to "no air." I could not gasp a saving breath. My body would convulse in an attempt to force my lungs to start heaving in and out, yet nothing would happen. Somehow, I would manage to get to my feet or I would collapse on my knees at my bedside floor with my hands clawing at my throat as I went through terror magnified by the inability to yell for help. I could not breathe...How could I ask for help?

Needing help and not being able to ask for it is one of the most pitiful situations we can experience in life...if I had been teetering on a cliff edge, I would have felt better than gasping for air as my husband slept soundly. Sometimes, I would start pounding the bed to wake him up, other times, he woke me with a sense of urgency after he realized I had stopped breathing for an extended period of time. But, during those dark times of having air kept from me, I would often nearly reach the point of passing out and my burning lungs would suddenly come back to life, opening for a raspy gulp of air.

Unfortunately, as my body went into a constant state of Addisonian Crisis due to constant misdiagnoses, this became my nightly scene. Sometimes this would occur multiple times per night. Eventually, I became terrified to fall asleep because I knew my body would fall into a state of deep sleep and the combination slumber with serious illness of my adrenal system meant normal functions would no longer be sustainable. However, with nearly non-existent blood pressure and depleted cortisol, I often had to fight to stay conscious during daylight hours.

Finally, the diagnosis came, after another Code Blue experience while in the hospital. My monitored symptoms set off alarms at my side, on the floor, and prompted a booming voice over the cardio-floor intercom to send medical staff scurrying into my room. However, I immediately realized that this body experience was similar to those that I had been having at home for weeks, without medical intervention. I do not know how I pulled out of those codes so often on my own, but my body was obviously not ready to submit to full shut-down mode. The way I see it, during that awful time in my life, my body was sputtering.

Back home, after my diagnosis, I learned that my "recovery" process would be painstakingly long and with alternating good and bad days. Most often, I would need some kind of assistance. The disappointment at not being able to bounce back, as if I had just recovered from the common cold, had been devastating.

I still felt like jello very much of the time; my vision and reflexes were not yet reliable enough to do the simplest of things, such as driving my children to school. Thanks to several of my friends and my mother, my youngest would have daily rides to and from school. Stefie didn't have the option to take a bus because the school was approximately 5-6 blocks away. This presented us with a stressful dilemma during stormy weather or on days when she was dragging from the incredible stress at home. Since she was still in elementary school, it bothered me to my core that she did not have a mom available to take her to school and to pick her up. At the Junior High level, my oldest daughter, Heather, had a bus available every day. Her bus stopped at only three houses down from our own, so Heather had reliable rides to and from school during this volatile time of never knowing whether I would be home or in the hospital from day to day. 

My eyes are closed, as was often the case for photos
and my youngest, Stefie, also has very sensitive eyes
that really NEED the courtesy countdown before the click!
But, this picture is to show the approximate time-frame
as the kids were close to this age when I became very ill
with undiagnosed Addison's disease, for too long.

My oldest daughter, Heather, was in Junior High, at a pivotal time in her life. The way I reached out to her during my physically weakest moments was to have her come into my room, to lay with me and just talk. We did talk...about school, projects, friends, boys and boys and boys. Still, she kept a careful, guarded eye on all that was happening, she did not trust her life to remain stable because she had seen things crumble too fast. Teenage girls are already in a rough spot when things are going great at home, a teenage girl is always in the middle of some personal crisis, they do not need to have a home-life disintegrating. Heather went through phases of rebellion at the world's mistreatment, but she discovered that her mother would still be her mother, whether in good health or in suffering health. She still had a mother; it did not take long for Heather to learn to handle the hardships with grace; she grew up fast while figuring out how to grab hold of a good moment and make it last.

As my auto-pilot was failing, my husband's was coming to life. Even though he moved through the day with exhausting numbness for so long, he held the family together when I could not do anything as simple as carry a feather duster. The main parts, he held together. For his kids, he morphed into a man who began to be present for his family in a different way. Even though my complete downturn didn't last for long periods of time, they caused enough upheaval to create major changes in our family dynamics.

For all of us, life changed.

My health struggles were powerful and they created a ripple effect reaching out to those closest to me. Surprisingly, those ripples would also impact outsiders who were remotely attached to our lives. I learned that every life creates a ripple effect.

One of my helpers during this time had been my best-friend. She would cook full four-course meals for my family. Kelly would come over and clean my house. During my days of being healthy, I usually walked around the house with a dust-rag in hand, things stayed clean, but when I became dependent, I could not even wipe the dust off the surfaces in my house. After I became very ill and mostly bed-ridden, I would see dust floating in the light beams filtering through my bedroom windows and those floating specks seemed to taunt me. Dusting the house...this chore had seemed so simple, it required minimal effort, even if it was boring and tedious, I always did a great job of keeping it done. But, lying in bed, unable to walk around with freewill means that the dust piles up. Day after day, the dust increased and reminded me that life was moving forward while I was forced to lay there and watch it whirl around me.

Me and my best-friend, Kelly. This photo was taken a few months ago
and I am so grateful to have a friend like her in my life.

I laid in bed and would stare at the dust on the television, on the bedroom furniture, on the picture frames...things in our lives were literally falling apart and dust was collecting. Life felt reduced...as if I were being entwined with the increasing dust in my life.

Isn't the term "dust to dust" for good reason? Was I also slowly becoming nothing but dust?

I knew in those moments of staring at the dust that I didn't have the energy or the good health to tackle something so insignificant. Watching my surfaces become coated became indicative of how serious our situation had become with my decline. The little things, all the motions taken forgranted, I mourned their loss. I could only imagine when I would be able to walk around without a care in the world as my body cooperated again to allow me to do menial things such as wipe off a bookshelf or sweep the floor.

I laid there, not being able to communicate my inner sufferings to match my outer failing; I knew things in my world would never be the same again.

Fast-forward nearly ten years to the time I discovered my neck had collapsed and that I had a spinal cord impingement so severe that it caused a spinal cord injury in the form of a large lesion across my C2 section of cord. My hands were numb; my feet were numb; I lost fine-motor detail ability...could not pick up a penny off the counter. I dropped things constantly because I thought the object was in my grasp, but I somehow lost the ability to control that grasp. My feet and legs were not moving to my brain automatically ordering them to do so...I would look down at my legs in complete confusion because they would not move forward to take the steps I was expecting. Everything felt detached. Were these body parts really mine?

Surgery would be brutal. Double-sided cervical spine reconstruction would be necessary with three vertebrae rebuilt using cadaver bone and large metal plates put in front at my neck area and in the back of my neck area, both plates were screwed into place with large screws and bolts coming from front and back to stabilize my neck. This was literally a life-saving surgery. Before surgery, with the spinal cord injury had come moments when my breathing would stop and start, as if my lungs were not functioning properly, kind of like a mechanical failure. Regardless, that old horror of not being able to breathe revisited me in a different manner...simply because that part of the spinal cord controls our breathing function. As my surgeon told me, if my neck collapsed any further onto the spinal cord, I'd stop breathing and it would be the end.

After this surgery, I was faced yet another long, painful recovery. I would need help for many of my daily functions. Granted, I am one determined woman and did many things on my own, even after surgery, but the swelling in my neck from being cut open at front and back would become so dangerous as to not allow saliva to be swallowed. If I moved around too much, the swelling would get worse and I would almost suffocate from the minimal room I had for air to get through and my tongue was swollen and grotesquely discolored after surgery. I do not know if this was from an intubation injury or from the spinal cord injury itself, but it did not help matters in the least. I had a hand-full of problems on my plate after surgery, such as the staple left in my head from the halo that had been attached to my skull during surgery so they could flip my body from back to front for the double-sided surgery and keep my neck stabilized for the change in positions. The staple remained in my head for weeks, even as I tried to remove it myself with the staple-remover from my desk drawer and when that didn't work, I pled with my husband and daughter to just yank it out. Both refused to touch it. After surgery, I had been sent home with the staple still attached to the temple area of my scalp, my blood soaked hair could not be fully washed while in the hospital due to the staff not wanting to take a chance on moving my surgically reattached spine, so the staple became my nagging buddy for a while. Into the bone the staple set deep and could not be budged.



Several weeks after surgery and I am FINALLY getting
the staples removed from my head and from the incision at
the back of my neck. I am scared, but it is such a relief to get
the staple out of my skull as my hair-brush kept catching on it.
The incision at the front of my neck is also healing nicely.

Accepting help with preparing my food, refilling my drinks, helping me to shower, to change clothes...all of it became necessary. My strong will and sense of independence meant nothing, it was left unfulfilled and floundering. A walk to the kitchen became a 500 mile marathon in the desert. Finally, I reached the point of being able to walk with my tray that held my plate and I would take it back to the kitchen, carefully balancing each step along the way since I did not have the ability to look down or sideways; I would set the tray down on the kitchen counter and have to leave it there. I could not stand upward long enough to do more than that little walk and the tray felt like a fifty pound weight that put pressure on my swollen upper spine to create pain and more swelling that I did not need.

I soon learned the swelling in my neck would be a battle that I would face for a long time...it did ease a bit, but the swelling then morphed into making my arms and hands go numb again. This probably lasted for a year after surgery. Spine reconstruction at this level is not for sissies, but even if you are a sissy and you require this surgery, you do not have much of a choice. The choice is, have the spinal reconstruction surgery or live for only a short time longer, until you become paralyzed from the neck downward with the inability to breathe on your own. After surgery, if I did too much, which was absolutely minimal movement, I would find myself with limbs that felt detached and as if hundreds of ants were crawling all over me, the same as before the surgery, and this was terrifying.

Regardless, approximately two weeks after my spinal reconstruction, my youngest daughter, Stefie, drove me to one of my business closings because I had an obligation and was determined to meet it. I put on my best clothes, with my daughter's assistance, and I went into that closing with my huge plastic neck brace around me, yet I tried to play it off by saying, "...it looks much worse than it really is." They did not look convinced. In reality, I felt humiliated at appearing weak, so I worked very hard to look "normal." With my purple, swollen tongue, this was quite an amazing feat to try to mask my condition. My clients happened to be a pastor and his wife of a local church; I will never forget their expressions and pleas that I just go home. But no, I stayed and did my job. I paid for it heavily once I was back at home, but I did my job. There would be more moments like this due to the obstinate side of my personality.

Often, I felt as if my family members were frustrated by me doing too much, but it also seemed they were conflicted within themselves because they also wanted me to get back to normal right away. All of us were struggling. All of us wanted our old idea of "normal" back, but it was long gone. Often, I would feel sad because everyone would leave for their day...just knowing that they had the luxury to be able to leave for a few hours of normal life while I was stuck inside of abnormal, well, it sometimes hurt. Those were hard moments in the beginning, but I also realized that each of us will have our own turn at being the one stuck in the body that isn't cooperating and we cannot expect others to walk in our shoes, so I let go of that feeling rather quickly, but it was powerful at the time it hit me.

However, my husband would take care every morning to provide me with at least two drinks at my bedside table...tea and water. He would put food next to the drinks and would take time to prepare quick-grab items at the ready in the fridge. My daughter would come in to see me before leaving for school and she'd make sure I had everything I needed before she headed out the door. I feel most regretful of this time because I know Stefie struggled deeply with not wanting to leave for school; she was terrified that her absence would equal my demise. However, I learned long ago, during my Code Blue moments, that the body would keep going for as long as it chose to keep going, but once it decides to stop, it has just as much power to quit as it does to continue. Stefie had not yet realized that she did not have ultimate control over my outcome on the level she imagined with a child-like quality...as if she were here and present, she might be able to ward off the worst case scenario. Yes, she might help me tremendously, but if the worst were to occur, the truth was, I did not want her home to witness it or to feel responsible for responding to an emergency situation.

My grandmother came to my house and stayed for a couple of weeks to help me during my recovery after the spine surgery. She was incredible. We are very close; she would sit behind me and even though I had on my cumbersome neck brace, she would lift the back of my shirt and gently rub my back and shoulders with such affection, as if she were trying to erase the pain. She gently took a washcloth and rubbed away as much of the iodine on my skin as she could. She succeeded in making me feel better. Her nurturing touch helped to relax my tense, enclosed, chopped up muscles. Throughout the day, she would quietly come into my room and we would lie on my bed together, she took great care to move with painstaking slowness so the bed would not move. Even though I could not talk much due to swelling issues, she would say, "I know you can't respond by talking much and you certainly can't nod your head, just blink and it will be the same as regular conversation between us."

That is love.

Me and my grandmother.

In truth, I was surrounded by people who wanted to help, but many did not know what to do. Many people and churches prayed for me, I remained on several prayer lists for a long time. Not to make an excuse to not visit someone who is ailing, but sometimes it is best to leave the person alone so they can heal. However, I now know that someone who is sick can hugely benefit from a person looking around and seeing what needs to be done without invading the person's privacy. A person like myself will put up a fight to keep from being helped, but I must say, all those years ago, after my Addison's diagnosis, my friend coming over to wipe away the dust that tortured me had been a gift beyond her understanding.

For others, it might be helpful do do such things as preparing easy to heat up food, cleaning house, running errands to get groceries, helping with laundry, cleaning the bathroom, taking the kids to the park or getting them school supplies or their favorite food to have in the kitchen, changing the bedding...just dusting the furniture...it all adds up and is meaningful.

I am thankful for those who came to visit, and I appreciate those who brought in their gentleness and their smiles. I appreciated those who didn't ask me how I was doing while seeing me in such an awful state that was pretty evident of how I was feeling. I appreciate those who still felt compelled to ask how I was doing because I knew they were struggling with what to say, but they still came. And, I appreciate those who knew that my silence and withdrawal was nothing personal against them, but it was necessary for me due to the lengthy healing requirements of my bodily structure and of my mind.

To my family, I thank you for putting up with the potentially hundreds of trays with plates of dried-up food left on them in the kitchen during the time I could not do more than leave it there for someone else to handle. It was not an easy journey during this time to make that trek to the kitchen and back, but I am walking around near normal today because of the help I received back then. I am still lack fine motor capabilities in my hands and fingers, sometimes they cause me infinite frustration at their uncontrollable nerve-jumping that makes a rogue finger tap the wrong keys while typing, but they obey me on a level that is good enough for an outsider to never know there is a problem.

In fact, I have again decided to start sketching...I am a former art major of Visual Arts and Design for studies in Humanities, but I have not done a sketch in years. Years of studies at the university brought me untold joy, but the spinal cord injury put a long halt to all of my greatest joys...piano playing, art, and my growing love for embroidery, but I am starting back with these things and I just gave my youngest my first real sketch since my cervical spine reconstruction...I gave it to her this past Friday for her 22nd birthday. I hope she knows how much it means to me to be able to give that gift to her, it also represents a "thank you" for all she has sacrificed for me.

While sketching, it is painfully obvious to me that my nerve conductions are still a bit abnormal because my fingers are often difficult to control during precise movements necessary to finish a sketch. This makes sketching details, such as the eyes, a great feat. Before recently, I am sad to admit that I had been trying to avoid doing too many things that would put those harsh reminders directly into my path. But, I have gone through another phase of confronting changes in my body. For me, this has been liberating. Sketching reminds me that such detailed work for my particular situation is much more challenging than it had been during my pre-spine-surgery days, but I am moving forward. I can now finally understand the reason painting had become a stressful event...paint is more unforgiving than graphite and charcoal which can be reworked with the help of an eraser. Still, as I start to sketch again, I get into the zone of sketching as I listen to music and can almost forget about my problems, but then, that finger jerks out of control and sends the pencil in a shocking motion...I have to stop, take a deep breath and start erasing.

Sketching does put me in the line of fire with being frequently interrupted by uncooperative body movements, but I also know, with awe, that I am glued together with bits and parts that will never duplicate the real deal, but I simply keep the eraser nearby and clean up the pencil scratches caused by occasional involuntary jerking movements. Maybe the longer I keep at it, the less inclined I will feel like screaming in frustration when the charcoal pencil jumps and makes a mark I didn't ask for across the page. It's a good lesson, another step for me to take toward accepting my situation and doing all that I can with what I am given. I am so grateful that at least I can draw, and I can erase.

I'm amazed at what I am capable of doing after all that I have been through...my body is held together by parts from donors, by the engineering of man and by the surgical genius of a beautiful neuro-spine doctor. I marvel at the ability to open and close my fingers and to take a step up a staircase. It is amazing to be confident that my brain can send a message to lift a leg and it will obey the auto-order for movement. I know how much these abilities mean because I grew up with a mother who had a left paralyzed arm and a right paralyzed leg. I already understood the loss of these functions in a way that a lot of people don't because I grew up in a household ran by a mother who had experienced a loss of those limbs at age five from Polio, so I could not believe that my broken neck was going to rip my ability to enjoy motion away from me, only three years after losing my mother to cancer. I guess, in a way, it is good she was not around to see my struggle with my spinal cord injury and broken neck because it probably would have been unbearable for her to witness. Even though I missed her presence during my greatest moment of need, I am grateful because I know the main part of my healing took place because I did indeed have loving people caring for me and helping me during my worst moments, the best way they could help.

In many ways, I am still healing. Many people who have gone through huge challenges in life do understand that there is more to healing than just the scar that is an evident reminder of their health hurdles...those scars often stand for deeper hurts and deeper wounds and more severe consequences that might never completely heal or never be sealed closed.

I think back over what has been given to me in the minutes and seconds of my life here on earth and it is good that I had been blessed to be prepped early in life to be a giver and a helper. I can see that growing up with a mother who was a semi-hemi-pelagic from contracting the Polio virus as a child did prepare me for the battles ahead in life. Little did I know that by watching her overcome major obstacles, I would learn to do the same for myself.

Sadly, I also know that some people cannot receive help, even grudgingly, because they are angry at needing help. Instead of allowing people to be their helper, it is easier for them to make the helper their enemy, as if the person helping is causing their problems and created their troubles.

During the past decade of my life, I have become aware of this receiving end of getting help and have learned what it means to receive help graciously. "Needing Help" is like an address to me, it is not a place I want to visit and it is probably a place you would love to avoid as well, but when I am there, whether for a short visit or for the long-haul, I have found that it is better to plant some flowers while there instead of spreading weeds. In other words...be part of the beautiful scenery of "Needing Help." Choose to add to the delightful part of being in that place instead of using the lay-over as an excuse to spread ugliness. And no, I am not saying to pretend that you enjoy the loss of independence, but I am saying to try to make the best of it. For the harsh truth is...What is the alternative?

For those who care about you, they realize that the adjustment after landing in that place of "Needing Help" will create upheaval, but do not become the person who cannot see the garden of beautiful moments because you forgot your sunglasses! I am trying to put it nicely...ADAPT. When you feel trapped in that place of "Needing Help," reach for the sunglasses, help to remove the weeds, and search for the beauty while you are there because you might leave that place with an understanding about life that can only be learned while you are visiting. Indeed, I had to do some digging to search for the beauty during times of great suffering and needing help out of the good graces from others, but there is beauty in all things, if only you search for it. It might only be a speck, but it is there for the taking. I am thankful that my visits to "Needing Help" have taught me a lot about life and about people, there is so much for me to share in this area, but I am already full with emotion from putting these few things down to share with you today.

I have faced the fact that the people I love might not be there for me at every turn in the road. Even though our lives intersect with those we love, we each have our own life to live and our own paths to take. In moments of being alone with my failing body during those hard times, I realized that my family might not be there for me during my greatest moment of need, such as when I am gasping for air and can find none. I learned that we can each be in the same room, yet in separate worlds. That was a hard lesson for me to accept. My traditional Kumbaya ideals had to get a reality tweak. In the same token, I had to admit that I will also not always be able to be there for my loved ones at every moment they need me, and this is a part of life that we all seem to grapple with, sooner or later, knowing we are put to some tests on our own. But, I will always feel that to do our best to help each other out, here and there, as much as we can, well, that is a great gift to share with others, indeed.

I am grateful to have given help to others and to have received help from family, friends and strangers alike. For that is the essence of life, to be here for each other and to give something of ourselves as a gift to others. From simple actions such as an encouraging word to cleaning someone's house that is unable to do it themselves, there is a way to reach out.

A wonderful part of life is that we can still try to help others while suffering through our own hardships...this helps keep us grounded and prevents complete selfish behavior. Granted, there were times when I could barely utter a word, but I could still give a loved one a smile. Our past struggles, of all kinds, should not be erased because those moments are the ones filled with substance and grit, those moments make us the person we are today and the hardships we have faced and overcome or that we continue to face should not be overlooked. Each step through my pain and suffering has made me the person I am today...the woman who continually tries to build a good life. A good life is always available, in the midst of suffering, it is still present, it is just harder to acknowledge. But, it is there, you have to work harder for the good moments, but once you reach them and grasp them, they are sweeter and more precious than an easy-to-come-by good moment that you once took forgranted.

Yes, I have beautiful, wonderful moments. If they do not come to me, I go out and find them. I will not give up the search for meaning in all kinds of experiences, good and bad. Finding meaning gives you reason to keep going. Do not quit searching for meaning in all things...it may be the life-fuel you need to keep going for just a little while longer and to continue sending out your ripples.