#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.

# 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.

# 131 - West Nile Virus - Getting Serious

I am a Texas resident and there have been several huge reports over the past few weeks of people contracting the West Nile Virus from mosquitoes. In fact, several people have died. I believe the first two people to die a couple of weeks ago were in the Dallas area, near where my oldest daughter, Heather, lives.

It is difficult to put this in the back of your mind when it is coming on the news constantly. I do not get overly concerned about many news stories because of sensationalism, but I know this virus is a real threat. I now hear the mosquito trucks racing down our street most every night and that is a reason to be concerned because our area rarely has the mosquito trucks running. I guess the virus is spreading so much that each city is in desperation mode to not have an outbreak linked to their city-name.

However, it became more difficult to live normal, as usual, when I catch a government-promoted commercial that was aired this evening, filmed with David Lakey, M.D., the Texas Commissioner of Health as the featured speaker. The title next to his head on the screen is, "West Nile Virus: Protect Yourself."

Dr. Lakey starts out by saying, "The West Nile Virus is threatening Texas, but you can protect yourself."

The commercial goes on to list a number of four "easy tips: to protect yourself from contracting this virus that is transmitted via a mosquito bite:

1. Always use insect repellent.
2. Wear long sleeves and pants outside
3. Stay indoors at dawn and dusk
4. Drain standing water (they show a tire in the yard being lifted so water can be drained)

The commissioner then says, "These tips are your best defense. People older than fifty or with underlying health problems are most at risk for getting ill from the virus."

Finally, he gives a suggestion to "learn more about the West Nile Virus at TXWestNile.org," which has the website also displayed on the screen. Then, the commercial comes to a close.

After seeing this commercial, I am starting to realize that this virus is much more serious than I had been thinking; it seems to have spread so much that the state government is intervening. If any of you have worked for the government, you kind of know that this is a sign that things are probably going much worse than the general public realizes.

I do admire the Commissioner for speaking straight-forward and no one can say he did not try to warn Texans to protect themselves. However, we just left the month of August by a couple of days and it's a pain to keep spraying insect repellent on your body after you just stepped out of the shower with clean skin and the suggestion to wear long sleeves and pants when outside is something few Texans will consider. At this time of year...most are wearing cool clothes so they do not suffer a heat-stroke. So, I think #2 on the list will be most difficult to convince people to do.

As for #3 with staying indoors at dawn and dusk, I am doing that already. However, I do step outside early in the morning to feed the chickens, so I guess I should put a can of insect repellent at the door and spray a quick burst of mosquito repellent on me before heading outdoors to spread chicken feed. Since I rarely go out at dusk, this one is covered for me, but for so many others, they are enjoying their evenings out without thinking about becoming seriously ill from this virus.

Regardless, this commercial has been a wake-up call.

As of August 30th, in Houston and Harris County combined, there have been 30 confirmed West Nile Virus cases and three deaths. The news says to wear a product with DEET as it is more effective in preventing mosquito bites. I believe the overall death toll for the West Nile Virus, as of just a couple of weeks ago, had reached approximately 17 people...I don't know exact stats, but for my metropolitan area, for there to be three deaths and then two that I know of in the Dallas area, it appears to be making its round. Supposedly, this is becoming widespread more quickly than anticipated.

I will do my best to protect myself and hope that I can convince my daughters to be wise and heed the warnings of the state commissioner for this health issue. It would be better to be safe than sorry.

# 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.

# 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.

# 126 - Priorities in a Row, Creativity in Tow!

Here in Texas, it looks to be a beautiful day. It started out rough for me, but it's building into a better and stronger day that I hope to be able to enjoy as fully as possible. Deputy Dave has already been out since the wee morning hours enjoying whatever it is that he enjoys and it's good that he does.

I hope that later in the day, I'll be able to go out and enjoy my own company, in peace and to have fun picking out designer paper for my oldest daughter's wedding shower invitations. Heather is so creative that she's hard to beat with imagination for cute invitation ideas!

For me, I love everything I come across when I'm in a craft store, but that is a blessing in life for me, I am easy to please. It takes little for me to find a worthwhile smile. And I don't mind having a great deal of solitude because I am never truly alone, the Lord is always with me. Always.

Since this is my blog to relay things relating to Addison's disease, I must first start with saying that I've been struggling a long while with abdominal pains ranging from dull to severely sharp, the pain can pounce upon me within a few seconds and with little warning. I believe my regular readers are aware of this issue. It's been a challenge because I might be out and about when it starts to occur and that could be a problem. The pain gets so intense that I have no choice but to double over in pain, I break out in a profuse sweat that accompanies severe pain, and I only want to get somewhere to lie down and to be left alone. Thank God, I've been able to be alone during these times, except for when Stefie was with me during a direct episode last month. It's not a time l like to share with anyone. Of course, as the severe pains and stomach cramping begin, I immediately take a hefty oral stress doss to accommodate my Addison's disease.

Through all of these increasing problems, I did manage to finish my service as a Grand Juror Foreman, but it was tough. One way to get through these last few months was to barely eat during our day in session. I could lightly nibble on something, but a full meal would have put me in danger of going into a ball on the floor, so I never allowed the chance to happen.

A couple of weeks before our service came to an end, I went to get a CT-Scan of my entire abdominal region. I had the scan on a Friday, then my doctor went on vacation for two weeks, which was great because I wasn't in a hurry to hear the results. I already knew something wasn't right, but I wasn't ready to hear it and I didn't want the end of my service on Grand Jury to be impacted by distraction. So, I decided to not hear anything about it until recently. Waiting three weeks for the results was not particularly difficult.

Plus, my youngest daughter was going through her own testing to rule out the possibility of MS and she had another test last week, a brain MRI, that came out clear...I was celebrating her good results! However, I didn't want to get my test results in the middle of her own issues...I wanted to keep her first and to not jumble the madness, especially for my husband because he didn't need to get bad news about those around him at one time --- I guess that was part of my "selfishness!". The least I could do was to spread it apart on purpose. Thankfully, Stefie is a healthy gal! It gave me added peace to be able to focus on her scan and her results first. I cannot thank God enough for her being healthy. I can handle my own health issues, but to see your child suffer is to be in agony for them.

As for my own scan, my family knows I had this CT-Scan and had been waiting on the results. My dad, in particular, kept asking me for the results. He was impatient. He would have rather gotten all the news at once and he would've just dealt with it rather than having to deal with a delay. He's not good with delays and he loves me enough to be  concerned every step of the way. But, he understood my reasoning for putting my own results on the back-burner. However, he told me, "I know you are worried about Stefie as a priority over your own health, and I understand because she's your baby and she's my grandbaby, but YOU are MY baby and putting this off is not good."

Dads have a way of getting through to you.

Of us all, the delay tortured my dad the most, but I'm glad he respected my decision and tried to wait patiently. He lets me know that he's praying for me --- my father --- praying --- for me. You can't get much more love than this. He's rather persistent and very involved with my health, after all, I am his oldest daughter. For the past few months, he's even let me borrow his car because I've let my youngest take our extra vehicle to college. My dad did not think it wise for me to be left without a vehicle, so he's made sure to remedy that matter and I'm grateful. His vehicle allowed me to make my appointments to to take myself to the places where I would go for testing and check-ups. It's good that I have a car because I'm usually alone for these tests, and I prefer it that way. There's nothing anyone can do but sit and wait; I'd not want to bore anyone in this manner. Besides, I'm rather tough and can endure the pain and stress of these tests on my own, it's often easier to do without seeing someone else's face contort into sympathy. I always tell my sister, "Save it for the results...then we can face it together...a test is a time of knowing nothing, getting the results is the time I will need you to lean on!"

As for my dad, he and I have been through a lot as father and daughter, which included taking care of my mom together as she died. We are well bonded. My dad does not put forth mock concern over my situation in front of people and then behave another way behind closed doors...his concern is genuine and consistent. He and I have a true friendship. I trust my dad. His heart is truly tied to me as mine is to his; no matter my age, I will always be his child and it is him that I sometimes worry about the most when I must relay a bit of news that might be considered "bad."

Besides, he is easy for me to approach, on a good and bad day. So, I'm more likely to go to him on a bad day.

The best thing about my dad, to me, is that he sees me as a good person, even with my every fault. He doesn't see me as selfish, even though I am borrowing his vehicle for a prolonged period of time. He thinks the best of me and for that I am astounded and appreciative. He knows my motives toward those I love are truly deep and that I would work to the death to help someone in a jam. He's my dad. He understands a side of me that would love to blend into the wall as a wallflower; that would be a delight for me, but this path of Addison's and other troubles is what I've been given, so I do the best with it that I can. That includes being honest about the good and bad times with my outreach. I refuse to put on a mask of lies surrounding this disease with complications because I want others to know that they are not alone in their moments of suffering.

When you have Addison's or Adrenal Insufficiency, everything in your life affects your condition.

Well, yesterday I spoke with the Dr. and he faxed me a copy of my CT-Scan. There are some definite problems that will need to be addressed right away. The problem is, there are several issues and the Dr. is trying to figure out which way to approach it --- which one should be first on the list when we are worried the others might need to be first. We will be talking again tomorrow.

At least I know why I am in great pain --- that has been revealed.

Of the many angles we are approaching, one test will be a colonoscopy as the reports says that a mass cannot be ruled out and the walls of the colon are noticeably thickened, which could mean a few things, not any of them are particularly good news. Then, the problem reaches to my bladder which has lining that is evidently swollen as well with thickened walls. The Dr. said he was concerned that everything in this area is swollen...something rather widespread is going on...it would be better if it were isolated to one area. But, like I said, it explains my increasing pain.

We discussed a potential hospital stay so that I could go through several tests within a short period of time instead of drawing out the tests for weeks, especially when time could be of the essence. I've already delayed getting the news of the CT-Scan for a few weeks, but now I must move forward with haste. I HATE being in the hospital, but this is one time when I might have to agree that it would be the most efficient course of action.

For those of you who have Addison's disease, you understand the problems that these battles in my body are creating. It makes it more difficult to manage the Addison's and this better explains why I've had sudden Addison Crisis symptoms over the past few months and am having a more difficult time keeping myself stabilized...my body is in a constant battle. As for the mass they suspect, I can almost feel something in that area when I lie on my stomach...it makes me wonder if it is the mass that I can feel? It's over 4cm in size, which is getting rather intimidating for a mass and I know what that size would mean, if it were to be malignant. When I lie on my stomach, it feels as if a hard golf ball is beneath me. Sometimes, I even check beneath me to see if there is something actually there in the way. There is never anything that can physically be moved to make the lump disappear because it's stuck inside of me. I guess we shall soon find out.

One huge issue is that I've completely lost my appetite, yet I force myself to eat every day. I try to eat two meals per day and to make it calorie rich so that I don't get into an Addison's wasting situation from the constant stress the issues are putting upon my body. Oh, I've got some "power pounds" on me so I am not very concerned about a sudden, rapid dip in weight loss...I've been good at keeping the padding in place. But, I am about 10-15 pounds less than I'd been last year, it seems I've leveled out, yet again. For me, having a stable weight is a good thing. Being skinny is not desirable. For those of you who suffered with rapid wasting due to Addison's, you understand this dilemma. I don't need to add a wasting problem to the other issues, so I am good about eating. Unfortunately, for the past several weeks, I have been so nauseated that I cannot get through my day without starting it off with Zolfran to control the nausea. At least I have this medication and it works fairly well to ward off major bouts of nausea.

Anyway, I keep going. There are plenty of people who have worse problems and they manage to keep moving forward. I will keep moving forward and doing all that I can in spite of these hurdles. I have had many challenges, but I've also had many MORE blessings. So, I can't feel abandoned by my Lord...he has seen me through some of the most difficult times. I have faith that He will be with me through all my days, until the end, no matter the age I am when the end might find me.

I am thankful to be surrounded by family and friends who are true supporters, even in the worst of times. Those are my true friends and you know who you are.

I will try to make more regular posts while doing all I can to heal my body because I have too much to look forward to. My daughter's wedding in October is such a huge event...I will do all I can to be in the best condition possible for that beautiful day.

There is much for me to look forward to. In spite of other areas that are disappointing, I am focusing on those whom I love dearly and focusing upon those who truly love me. Letting go of former friends who have turned out to be very unfriendly has been a treasure and a release. Those with mechanical motivations have lost their gleam for me...but it makes me better focus on all the other areas that are rich with blessings.

I'm sure a lot will be happening over the next week, I'll keep you posted! Meanwhile, I'm working on designing my daughter's wedding shower invitations that are looking as if they will be SUPER CUTE! It's wonderful to be able to focus on such things during times of personal hardship. I love the goodness in life that distract us from the ugly parts; I appreciate those who offer encouragement and kindness, at all times, not just during the scary times. I value my true friends who are eager to think the best of me, even in my worst moments.

It's great to also have such awesome blog buddies!

Thank God for good things in our lives!



A Couple of Months Ago

# 125 - The Biggest Bouquet in Texas

The Hill Country of Texas can often look like a vibrant painted canvas during Springtime. The coloring that carpets the ground from various wildflowers is a sight to behold. While growing up, my parents would take many road trips, these included weekend jaunts with the sole aim to see the wildflowers in full bloom.

In fact, people travel from all over the world to come to the Texas Hill Country during Bluebonnet season. The rolling hills are blanketed in these violet blue flowers dotted with white accents that have petals and a structure appearing most unusual.

One of the most loving things I can remember passing between my parents was during each Spring as they readied to leave for one of these trips. After we kids grew up and left home, my dad and mother continued taking those trips simply to go see the wildflowers. They'd pack a bag and leave the house, heading for the Brenham area in general, but without any particular destination in mind. The only thing propelling them forward was the chance to see the hills covered in flowers as far as the eye can see.

In this Hill Country, even small spots of available earth are crammed with wildflowers. You see highway overpasses skirted with wildflowers. Driving down the road, it's almost as if there is a sea of flowers spread before you, it's indescribable. There are bursts of color in nearly every conceivable place that has dirt.

In fact, the sight strikes my heart deeply because I always find it amazing that such beauty can spring forth from brown, colorless dirt. I guess we all come from humble beginnings and to the same we will one day return.

Most of all, these flowers remind me of a kind of love that carries such a sweeping depth of sweetness. Even though my mother had so many tribulations in her earthly body, my father looked upon her as his wife and a woman with more to give than a woman who could be defined by her condition. Even in her worst moments of being overwhelmed with uncontrollable pain and suffering resulting from her body being riddled and left forever marked by Polio, he believed in her strength.

Even though she had the dreaded title of "Polio Victim" from a young age, he never accused her of being a "victim" or of having "victim mentality." In fact, when she did have moments of weakness, he did not belittle her for being human. Better yet, he could've easily used this dreaded word against her during their worst moments as a couple, but he never tried to punish her further for something she had absolutely no control over. I've found that a person who is close to another enduring major health challenges is given their own opportunity to show uncanny strength and to shine in their own way. I am glad to have never heard my father accuse my mother of being a "victim." Sure, she'd sometimes cry and feel extremely frustrated during certain moments of her life and things were not always rosy, but he did not try to capitalize upon her weaknesses. If anything, his downfall would be that he could not see her weaknesses clearly enough and she liked it that way.

I thank my father for never making my mother feel as if she were a victim...not of her own weakness as a human and not of the failings of her body. It takes a big man indeed to let his woman have weak moments without taking advantage of the same for his own ego.

It's wonderful that we, as a family, celebrated her triumphant nature. She was a fighter. And the wildflowers remind me that instead of doing things for her with a mindset of pity or with a hidden heart of feeling nothing more than charity, he did things with her out of true love, mutual enjoyment, and out of seeing her as his partner with a smile.

Together, they savored the wildflowers. He may have not have sent many flowers to her in their lifetime from a florist in a glass vase, but every year he never missed a chance to personally escort her to the biggest, boldest bouquet in Texas. There will be no one else in his life with whom he can share the wildflowers like he did with the wife of his youth and of his increasing years. He's tried, but he's found it to be disappointing because the wildflowers just aren't as pretty or as enjoyable without her by his side. No one else has the child-like excitement about those flowers as she had so willingly and openly expressed. To me, it makes me happy to know that it is a tradition that he still can't find as complete without my mother and that is an authentic expression of his heart.

I'm so happy to know that every year my mother was able to fill her mind and spirit with a beauty that only nature can provide. And now, her strength is my strength. Her determination is my determination. Her willingness to sacrifice, even when others were blinded and could not be gracious about it, she continued to sacrifice...that is my legacy.

It's a good one, and I am fulfilled. For the flowers and for so much more...I am grateful.

# 121 - Consequences of Life Impact 100% of the Population

Dealing with a chronic medical condition opens you up to a host of other issues that might want to tag along behind the main problem. It's often part of what happens after your body starts to have a medical problem, for so many of us, it's just the beginning.

As for me, when I fell critically ill with Addison's disease...I discovered that many "lay" people will instantly gravitate toward pointing a finger with laughable "educated" guesses as to what could have caused you to "come down" with that condition. I've discovered that it is often human nature to display this lame attitude that spouts "I can't get that disease because I didn't do x, y, and x!" It's as if they believe an invisible protective barrier can be put between them and such a medical condition because they have lived in a way that has guaranteed their inability to be inflicted. Well folks, there are no guarantees out there. Many conditions have links to suggested causes, but some disease are completely without rhyme or reason for who gets it and for what age it can sneak up on you. With Addison's disease, for my situation, it sort of went like this...get in line and be forced to draw one of 100,000 tickets stuffed in a barrel, it seems nearly impossible to end up with the unlucky Addison's disease ticket, but you reach in, grab the ticket and turn it over to find it's the Addison's disease ticket. And there's no turning back.

Many people battling various health issues along with people who suffer sudden terrible injuries can find themselves holding one of these unlucky draws. You wish to be able to do it over again, but life can put into our hands a circumstance that we didn't want to find ourselves holding. However, if you are finding yourself staring down a bad situation, you must confront it with knowledge, courage and with as much endurance as you can muster.

As for Addison's disease and adrenal disorders, so many afflicted do become very ill. Their lives are often altered, permanently. Others feel fine one day and the next are flat on their back. I guess my point is that very few people diagnosed with this disease are living in a body that feels the same as it did in their pre-Addison's days. For those who have not been impacted much or for those who were "diagnosed" prior to their body going completely kaput on them, well, those people are very fortunate, they lucked out on drawing that particular ticket. However, I can tell you, unequivocally, that my body going into a Code Blue due to being undiagnosed for so long was not a pleasant experience and many others with adrenal disorders have also found themselves very ill, struggling day by day. My Code Blue is what grabbed the white coats in the hospital by the collar and forced them to look in places for a solution that had not yet been searched. My treatment for Addison's did not come until after complete medical testing had taken place to confirm or deny Addison's disease. However, the suspected diagnosis was so strongly supported by symptoms and available test results that the doctor had the meds ready and waiting to be administered as soon as all testing had been completed. They closely watched me, ready to act, but they didn't want to burden me with an Addison's disease label, without having testing to back-up the diagnosis. This is a hard line to walk...dangerous...but I was in the hospital and hooked up to every machine imaginable. The suspicion was confirmed and I appreciate this strong stance so I wouldn't be taking drugs that my body really didn't need for the rest of my life. I can tell you that an Addison's Crisis is not the same as having a bad day with low energy levels...left untreated, it is INCAPACITATING. Period.

As soon as the testing was complete, the miraculous treatment began...before the results were in, they believed they had found a solution and it was confirmed in an upfront manner as soon as those drugs were put into my IV and I began to again be able to hold my head upright by myself, to sit up in the hospital bed and to even begin walking again! FINALLY, I could withstand moving into an upright position without passing out. They sent a physical therapist to my hopsital room and they placed a "walking/stabilizing" belt around my waist so they could hold onto the loop of the belt at my back as I walked. I was 33 years old, getting help to walk again, but having to use a walker. The nurses were clapping. I felt amazing. Little did I know that a long, hard road would be in front of me. Those first few triumphant steps after receiving treatment for Addison's disease would not be a "cure all" equivalent. Hard lessons would remain in my path to become stabilized. My condition had become "brittle" and that is not a good thing; it is more difficult to become leveled out if your condition is brittle.

But, for the record, I wanted to make it known that I had been in great shape prior to becoming terribly ill with Addison's disease. I never smoked, was NOT a drinker, never did drugs...my life had been squeaky clean. I ate great, worked out...even had a membership at the YMCA with my entire family, I played racquetball, biked, hiked, camped and led a very, very, very active lifestyle. I worked and lived for my moments outdoors. My children grew up outdoors because both my husband and I cherished every outdoor moment. As most other families were inside, trying to avoid the heat and playing video games month after month, we were taking weekend trips all over Texas...truly LIVING life and experiencing nature first-hand.

Then, my body shut down, literally. It shut down. I can look back and see how the symptoms were creeping up on me, such as the sluggish walking-through-mud kind of sensation I'd feel during a simple walk, but I still feel as if the big Addisonian crash hit me rather fast.

Since I'd lived such a healthy, active lifestyle, the doctors could not figure out what had happened to cause my body to be impacted by this disease.

There was a tracing back to my teenage-hood of moments recorded with extremely low blood pressure, high heart rate and low sodium, but the racing heart moments always passed and happened sporadically. Once my body went into shut-down mode at 33 years of age, I found myself trapped, like a ragdoll.

For the record, my doctor told me that he was certain I would have not survived this critical state of illness UNLESS I had been in such good physical condition when the worst happened. My strong physical state and life-time of active living definitely helped me to survive the worst of times, precious time as world-renowned doctors were given a bit more time to scratch their heads and to finally find an answer.

Therefore, I'm grateful for my random good choices that positively impacted my situation with this rare disease. Making the personal choice to not drink had probably saved me in a huge way...alcohol depresses and relaxes our muscles, my lack of cortisol would have created a lethal mix with alcohol during those times. If I had drank during those months of my life disintegrating, I would have contributed to a faster downfall and probably would have lessened my chance of getting that life-saving diagnosis in the nick of time.

Regardless, I have been through major testing by all kinds of doctors in Houston's Medical Center in an attempt to find an answer. I've found it highly interesting that one of the suggested links was that my blood-work had tested positive for the Epstein Barr virus and it is believed that my body's response might have gone haywire in the attempt to battle the virus. Lately, I've been reading of other Addison buddies who experienced smilar suggestions. If that had been the case, then my adrenal glands had been mistakenly assaulted by my own system trying to heal itself, kind of like the adrenals were unfortunate victims of friendly fire.

This is auto-immune chaos at work. Perhaps that is what happened. I don't know. A solid answer was never found to this perplexing question for my particular situation with Addison's disease. There are other suggested reasons for me developing Addison's disease, but no one really knows an answer.

Yes, it would be nice to know what went wrong so that we could all learn from it, especially since this is not a common condition. For my own children, I wish I knew the reason this rare disease picked my body as a permanent residence. However, it is important, to me, that I keep moving forward and continually try to live the best way possible so that I can enjoy the few good days per week that I am given.

Going down the rapids with my friend, Stephanie.

For those of us who watch someone battling cancer of watching people struggle with heart disease...we cannot be so eager to point fingers of judgment for their condition. I always tell people to be careful because those fingers might be pointing your direction, next week. You never know.

After all, each of us is doing SOMETHING, day by day, that could possibly produce tragic results. Heck, a good friend of the family is running every major marathon within a 400 mile radius that she can enter, while knowing her joints are in serious jeopardy from the constant impact...it's not necessarily a good thing FOR her, but she's kind of addicted. She feels as if the act of running is good for everyone, but that's become a moot point, even for her own body. I stood by her the other day as she pointed to people with a big gut while she made ignorant comments about their diet causing problems and I just shook my head as I wondered if she even realized that her own acts were about to put her down a very "hard" road of premature joint replacements. For those kinds of people, you can't really reason with them. As my husband always said, "You can't reason with the unreasonable."

I guess each of us should do what we feel we need to do or want to do, within reason, without excuses for "bad" choices, embracing as many healthy boundaries as we can, but do it while embracing compassion for others who are trying to make it in this world. Taking responsibility for our lives is extremely serious, but there are, for ALL OF US, consequences down the road awaiting us, in one way or another. Some of us rush to meet it, on purpose, while others are ducking and dodging, doing their best to avoid life's punches. As for me, I'm ducking and dodging; it's not as easy, but I keep moving! Regardless, I CAN guarantee that 100% of us will eventually meet the end of this life with final consequences...just because we have been a living being. Living and dying go hand in hand. I'd prefer to put off the dying part of the equation for as long as possible, but I can't say that I'm a "perfectionist" at being a human being. I've not met anyone else who has been either, except for the guy who advertised for drinking home-made veggie juices, but he couldn't avoid the final consequences of life either. My point is...if you brag about your strong legs today, they might be gone tomorrow from a car accident; if you feel smug about your strong physique today, you might find yourself with a funky virus tomorrow that causes muscle wasting; today does not guarantee tomorrow and our choices do not always guarantee a life free from complications, in every area of life, including our health.

Willing minds, eager for deeper understanding in life will get it faster than the next...a pointing finger is always attached to another imperfect human body. Becoming more compassionate and alert to the suffering of others is always a good stance for us to take, especially if we hope to receive the same from others. Our choices do have an impact on us directly, heck, I have already touched my fair share of public door handles this week. How about you? Are you living recklessly!?