#89 - WARNING-GRAPHIC PHOTOS (Not for the faint of heart) Erasing Life Not Wise

WARNING: THIS POST GRAPHICALLY DOCUMENTS A FEW OF MY SURGICAL BATTLES - BUT I AM STEPPING OUT ON A LIMB BECAUSE I WANT OTHER ADDISON/ADRENAL INSUFFICIENCY PATIENTS TO KNOW THAT YOU DO HAVE A CHANCE TO SURVIVE MAJOR SURGERY WITH THIS CONDITION, IF IT IS HANDLED AGGRESSIVELY AND YOU HAVE EDUCATED ADVOCATES ON GUARD, READY TO SPEAK UP, LOUDLY, IF NECESSARY, ON YOUR BEHALF.

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I've learned over the past decade that my health problems are not something that I can just erase. I've tried, believe me. First, I would delete or destroy any pictures of me that looked terrible if they highlighted me looking unwell. My family thoughtfully and delicately took lots of pictures of me during the various serious surgeries I've had and I'd just DELETE any pictures that I found personally disturbing. Soon, I realized that I was deleting everything because I hated the reminder of what I went through.

Over the years, this has left me with very few photos of the challenges I've endured; I now wish that I had not been so eager to hit the button to erase those captured moments. I now wish I had not torn up photos and discarded negatives of moments that were too painful to see again. However, I now realize that I should have honored this part of my life instead of trying to pretend it didn't happen. After learning that patients who have gone through serious illness, injuries and surgeries can suffer post-traumatic stress episodes, I FINALLY better understood the "why" behind my attempts to rid myself of evidence of my battles.

And, there is no escaping the scars on my body. My body has taken a beating. It's been close to hell and back, but I'm still here. During one hospital stay, I had a doctor come to my hospital room with my huge chart in hand and he was flipping through it as he walked in. I was sitting up, in my short set outfit, reading a book. As usual, even in the hospital, I did my hair and put on a bit of makeup. He glanced up at me, back down at the chart and said, "Excuse Me," and he walked back out. A moment later, he came back and basically told me that he couldn't believe that I could possibly be the patient who had gone through all those serious surgeries because I looked completely opposite of what he expected.

He confided that he had to walk back out of my hospital room to confirm that the chart matched the patient, me. He was in disbelief and he said that I shattered any mental images he'd readied himself to see as he entered my room. For the first time in his career, I made him question his pre-conceived, chart-induced notions. Since he was making late night rounds and had been on duty for over twelve hours, he was exhausted. I told him to take a load off and he settled in on the sofa while saying, "I've got my pager on; they'll catch me if needed," and he even laid his head back and caught a catnap. He'd been brutally honest with me and I appreciated it, so we had instant respect for one another and he got to relax while I continued to read my book.

I'm paraphrasing, but his parting words had a continued impact on my life. Before he left my room, he said, "Don't ever let anyone say you are weak because most people would not be able to endure or even survive all of the surgeries you have, especially with your adrenal condition. Obviously, you are extremely strong and mentally warrior-minded...your appearance does NOT mirror what your chart says you've been through."

A few months after my spine reconstruction, getting to finally wear the SOFT brace! Ya!
I'm with my dad as he gets ready to leave for the Houston Livestock Show & Rodeo.

So, I realized that I should not have tried to work so hard to erase the images of my journey. I could not Find Lana if I kept running away from her.
Even if I did not look my best and even if these photos make me cringe, I should've respected my own journey and not shied away from facing the truth in photographic form. If someone doesn't like seeing my journey, they have been warned and can go visit someplace that has flower, beaches and creme puffs. For me, that's not always been my direction.


My Stefie is staying with me until they roll me away for the spine surgery.

 I realized, over time, that my photos definitely are NOT pretty, but they prove that an Addison's patient can survive major surgery --- or in my case --- multiple surgeries that are life-threatening to an otherwise "healthy" patient that doesn't have adrenal issues.


My husband, Deputy Dave, kissing me before I am taken away
in the hopes that my collapsed neck can be stabilized. The spinal
cord has an area where only a pin-hole size
of spinal fluid can pass through.


I've had two cardio-thoracic surgeries. The first in 2005, the second in 2006. Each one left me gasping for air for almost nine months from a collapsed lung and other horrible side effects. But, I didn't have a choice...the surgery decompressed main arteries to my upper body. This condition had put me in grave danger of the compressed arteries creating blocked blood flow which would create blood clots and that means a possible pulmonary embolism among other lovely dangers.

These surgeries were horrendous. Each surgery meant that my first rib had to be cut out, the muscles in my neck had to be cut out and I have clips running along the arteries because there was uncontrollable bleeding that required clipping. Still, after the first surgery I had major internal bleeding. Not fun.

Weeks after my surgery, I saw the pictures that my family had taken of me lying in bed at the hospital with the huge bloody bandage going across my neck/thoracic area along with the bulbs for draining excess blood from inside my body. Not a glamour shot.

I've been looking for these photos. We'll see if I can find them and post at a later date.

Then, I had cervical spine reconstruction...fusion, plating, bolts with screws, rebuilding with cadaver bone. So awesome! Really, it is. I was very close to being either dead or completely paralyzed. My legs were already dragging and the feeling in my extremities was no longer without constant numbness and tingling. After the surgery and long recovery, I got back more use in my legs and hands than they ever thought possible.



My cervical spine reconstruction --- very challenging time in my life, but
I made the commitment to do my best to recover and do as many
"normal" things as I could.

 Again, this neck collapse is mostly due to the steroid treatment I must take to control my Addison's disease, but the steroids have taken a huge toll on my bones, especially my spine.

Dr. Ghosh removing his perfectly placed stables

It's difficult to see all of the bolts in this x-ray, but I believe there are
twelve of them. Or, maybe double --- maybe twelve on front
and twelve in back...I can't remember. This surgery required a halo to be
attached to my skull - the neuro-spine surgeon rebuilt my spine from the
back of my neck thru a five-inch incision, then they flipped
by body to do the same through an incision in the front of my throat.
Talk about horrendous swelling...for weeks I would choke on my own
saliva after this double-sided surgery.  

 

I really am a tough gal. The hospital mistakenly sent me home while
there was still a staple in my skull, near my temple, that had helped
hold the halo in place during my surgery. I am brave...
got the stapler remover from my office to try to remove it
myself and it wouldn't budge. So, here is Dr. Ghosh
removing the staple. With this Photo you can also better see
 the incision across the front of my neck.

 

Here is the back of my neck, before staples are
removed. My neck was very swollen.


A few years after my cardio-thoracic surgery on the right side, I had my minor pectoral muscle removed because the jagged edges of what was left of my rib removal had literally shredded this muscle, so it had to be removed completely. Great, more scars and more muscle removal.



Here I am --- three years ago ---- I made it to age 40!

 Then, I had other things hit me. Such as my gall-bladder dying - no gall-stones, it just died. Three months later I had a horrific surgery to remove a large mass on my right side that required the dissection of my 10th rib. The surgeon really didn't do a great job. You can see from his staples, compared to the staple job on my cervical spine (back) that the abdominal staples were not neat. For six weeks, the wound still bled heavily and I knew something was really wrong. It took a couple of months before they could remove the staples and things did not feel right. Every staple had infected my skin. However, I have been through so many surgeries that I told myself to be patient.

Little did I know, patience would not be enough. Three months later, I was back in surgery because the internal incision had not closed. I don't think this surgeon did a superb job; I believe he was too concerned with setting record time with his surgeries instead of taking his time to do a worthwhile job.

My abdomen is very swollen because it's been pummeled.
This is after the removal of my 10th rib, a large mass and the
staple job is horrible. Did it hurt? Yes.

Within a six month period, I would have
THREE surgeries in this area.
The next surgery of re-opening this same incision
found me with stitches instead of staples - MUCH BETTER -
and a drain tube that definitely alleviated internal bleeding pressure.
But, the tissue transplant had internal sutures all around it
and I could feel those tug with every movement along
with the external stitches. There's no telling how many
stitches it required to accomplish that tissue transplant.

So, back into the hospital I went after a team had reviewed my file, ordered multiple tests and consulted each other. It was determined that I would need one of the largest tissue transplants they'd ever done, but the main problem was the the area of abdominal tissue separation went up so high on the rib cage that they couldn't figure out how to attach the tissue transplant to my body without having to attach it to my ribs. This would have created terrible pain every time I breathed.

On my end, I could not conceive that my painful, bruised abdominal incision would need to be re-cut. I had not even healed from the last surgery and they needed to butcher me again so that I could indeed heal. It was mentally disturbing.

The high-tech surgeons at St. Luke's Episcopal Hospital in Houston, Texas decided that this open surgical wound could not be patched with plastic mesh that is normally used for run-of-the-mill hernias. This was a surgically created, massive hernia...also possibly caused by my body's inability to heal as fast due to steroid treatment for my Addison's disease. Let's see...die or take the steroids daily...I kind of like breathing, so there's not a choice.

During this time of multiple surgeries, our house was destroyed by
Hurricane Ike. The interior was ruined and had to be gutted.



Here are the lovebirds. Again, this me being strong enough to take
a trip within four months of getting the tissue transplant.
I am 41 years old.

To close my abdominal gaping wound, the surgeons decided to use swine tissue that the hospital developed in their own labs. This option is not even available to so many people...those people end up with plastic mesh. Swine tissue is less likely to be rejected and my own tissue was supposed to weave itself through the transplanted tissue to create my own abdominal wall again.

To be honest, I was initially disgusted. For real? Swine tissue? Then, I learned that the military is making great strides in their attempts to repair horribly damaged tissue in our injured soldiers and swine tissue is the stuff that has helped many soldiers recover from injuries that would otherwise have killed them. So, I gained a fresh perspective...made a few jokes about being thankful that I didn't have a pug nose, but I might have a slight bacon flavor. Since I love Emeril, this is A-Okay with me.

In all seriousness, I was told that this tissue transplant saved my life. My abdominal wall was missing and with the 10th rib removed --- which ribs normally offer protection for your organs, my organs were shifting and without a strong abdominal wall in place, one wrong bump or push could have caused organ trauma and a fast death. So, I was thankful to be among the ranks of our soldiers and thankful to the swine for their contribution to my life as I know cardiac patients are thankful for pig heart parts, valves, etc. Our hero, the pig.

I'm glad that I didn't get a chance to erase everything and that I have several photos still around that document those surgeries with such a personal touch.

But, the REAL question is...Does this mean that I am a cannibal if I eat a BLT?

Four months after my 3rd abdominal surgery I'm snorkeling
in Cozumel, Mexico --- in deep waters --- no fear - enjoying the
chance to forget my constant pain.



#88 - An MRI and a Big Fit

Wow, it's been a beautiful day here in Texas. Really, it has because we FINALLY got some heavy rain that came down in a steady pour for quite a long time. I'm sure the parched earth drank it up with a smile.

Unfortunately, I also had an MRI spine study that required me to be inside the tube for nearly two hours, as it rained. I'm not claustrophobic, but no one likes to have their head locked inside sci-fi gear and their body rolled deep into an extremely confining space that makes your eyes criss-cross when opened.

I have such a strong mind that I have learned to calm myself and to take myself to another place during my many, many required MRI's. If you've had health problems like I've had, you don't have the luxury of being claustrophobic...you get on with it and get it over with as fast as you can. I swallow my fear and move forward.


In the MRI tube, I think of moments with my girls...like this time at the rodeo.
I think of pleasant, far-away things instead of the tube closing in on me.

Although, swallowing the fear is not as easy as I make it look, especially since my body is full of titanium clips, bolts, screws and plates from my abdomen to my upper neck. Even though this metal is not supposed to come flying out of your body as the MRI magnets whirl around you, it's still unsettling. I have one area in my abdomen that has a metal clip and it does hurt pretty bad for a few days after my MRI --- I don't think it's the right metal, but I keep my hand pressed firmly in that abdominal zone during the MRI and keep hoping I won't be ripped to shreds.

The past few MRI's with my extensive hardware has found me experiencing a new unwelcomed sensation. During a long MRI study, such as today, I find that parts of my body become very hot and this is PRIOR to contrast IV fluids. It seems to happen mostly around the areas of my hardware, but the warmth spreads and it feels like my insides are beginning to bubble. I can take a lot of physical hardship, scary situations, and a lot of pain, so I just try to be still and get through the MRI without creating a problem.

Me and my dad
months after spine surgery.

I got through it today, again.

Unfortunately, my mind did not drift as easily to wonderful places during the MRI because of stress at home. Living with people who are prone to throw fits is not pleasant. I have enough chaos in my life with trying to battle my daily physical demands without adding ridiculous, immature fits to the mix.

My oldest daughter is coming home for a visit this weekend, she's driving over five hours (one-way) to get here, and I've been super excited. We are getting to spend time together and go to my niece's birthday party together. But, it seems that so many times in my life when I should have been savoring and enjoying precious time with my family and friends, I've instead been involved with a certain person's childish fits and the horrible fall-out it creates for an extended period of time. It's hard to trust someone who can go ballistic so fast.

As usual, the timing for this person's ugly tantrum coincides with a family/friend gathering. Surprise! Like I've never experienced THIS before, ha-ha. Just like that unwelcomed heat spreading through my upper body during the MRI, I have someone who is trying to make my home a spot too hot to visit because no one knows when the explosive personality will emerge. I look at this person and am miffed by their ridiculous behavior, the extreme rudeness is unnecessary, but still this person feels justified.

It occurs to me...Maybe a person who gets their way during childhood by throwing fits is the one who keeps doing it throughout life. The problem is...the fits get more ridiculous, more embarrassing, and more intolerable as I get older. And, I don't feel like writing flowery things when this person is doing MUCH LESS than adding flowers to my day. If I'm going to be accused of being selfish, then dammit, I'm going to write what I feel and let my selfish bone stick way out. I might as well live up to the name-calling.

As for my name-calling, these kids are pretty darn cute.
My girls --- just a few short years ago!

So, back to the MRI...I found myself in this unbelievably small tube, and I was forced to make my mind float away from my circumstances so that I could get through this extensive spine study.

Boom, boom, boom, click, click, click, clomp, clomp, clomp goes the MRI sounds. And I found my ticket, I start to drift away and let myself hear the eerie similarities in the MRI as with the group Pink Floyd. Yep, in my MRI there was a private concert being played, just for me.

I was so happy when it was over. Yippee! I get to go home to my wonderful house that is full of tension. Can I go back into the MRI tube?

This weekend, I'll enjoy my daughter's visit. I don't care if I get to spend five minutes with her...she's my daughter, MY FIRST-BORN, and every minute with her is precious. Maybe I value those minutes even more because I have been confronted so many times with thinking I was living my last few minutes as I was falling comatose. Regardless, I've always had a big neon sign over my front door that says, "All Are Welcome AND Welcome All," --- even though someone keeps trying to bust it out. My mother welcomed everyone into her home ---- big, tall, short, small, wide, snide and full of pride ---- all were welcomed, it was a wonderful lesson in hospitality while growing up.

I'd like to think that the neon sign I've worked so damn hard to put up over my house is still shining brightly, in spite of others trying to yank the switch.

So, I will go back to cleaning, dusting, vacuuming and getting ready. I'm doing all the things a mom loves to do, even if I do it alone and very slowly...with interruptions such as to go lay in an MRI contraption for too long. Can they combine a tanning bed with an MRI? It's a thought.

I can picture the sign:

"GET YOUR DUAL PURPOSE MRI HERE!

COME CHECK FOR KIDNEY TUMORS WHILE GETTING A TAN!"

Okay, I've been a medical patient far too many times...I'm slightly warped and I'd be a perfect writer for the show, Saturday Night Live, but I'm content with my little blog. Unless you work for Saturday Night Live...Call Me.

I just keep remembering that I've been blessed to have multiple second chances and that no one can take away my joy, well, not for more than a few minutes at a time. And as I am vacuuming, I'll try to ignore the big, grumpy dust-bunny in the corner; besides, I am becoming more and more allergic by the day.

#87 - My Slight and Hard-Core Addison's Symptoms

I have decided to try to explain my Addison's symptoms with details. I realized that I have two sets of symptoms...early warning signs and severe symptoms of an actual full-blown crisis. Each person may have different symptoms, but I wanted to share my own, especially since I've discovered other Addison buddies relate to my personal experiences with going into a crisis.

If you've not suffered an Adrenal Insufficiency/Addison's Crisis on a serious level, I hope you never will and there's a chance you might live a long life without ever experiencing a crisis, but you need to recognize the difference between the warning signs of an impending crisis so you can start the battle against it and so you can know when you are just going to need to trust others to get you through the worst so you can have your second chance.

Subtle Symptoms might include:

1.  Slight Stumbles:  I am very irritated when I stumble. It is usually a small stumble, such as the tip of my foot catching the tile at the grout line, which is nearly non-existent, but I guess my feet are dragging more than I realize. It took me a while to figure out that this was one of the very early signs of my body needing more Hydrocortisone, fast. If I am not aware, the next step might mean a fall.

2.  Double Vision: I will usually have a couple of days of this symptom to where I see double and triple, it's another warning symptom or a sign that I've over-done things and need extra meds and more fluids.

3.  Shaking:  Since I am susceptible to low blood sugar and many Addisonians will have dips in their blood sugar, I can get very shaky without much notice. The problem with this symptom as an Addisonian is that it taxes your system and increases your need for more Hydrocortisone.

4.  Feeling Sluggish:  Sometimes it feels as if my body is a lead weight and it is difficult to move each limb. The danger with this symptom is that it is most often means that my body is beginning to come down with a viral or bacterial infection of some sort. If I start feeling worn down on a marked level, I double my meds and wait to see what it is that I've caught...usually a cold. If needed, I get started on a round of anti-biotics.

5.  Racing Heartbeat:  Addison's has officially given me the side issue having regular tachycardia. If something happens, even a scare or an angry moment when you normally have a raised heartbeat, the problem is...my heartrate will not come down with time or with taking some deep breaths. The heartrate has no signals in my body (cortisol/adrenaline) that will prompt it to slow down. I have a beta blocker that is prescribed for this side effect of Addison's and it helps a lot, but I must be careful because too much of this medicine can bring my blood pressure too low and that puts me between a rock and a hard place when I'm enduring a racing heartrate.

6.  Nausea - Stomach / Back Cramps:  For me, these are frequent symptoms that I must battle and that are a part of this disease. I don't have any problem keep on weight because I absolutely REFUSE to vomit, unless it's out of my control. I actually work to keep extra weight on me because I've lost 18 pounds in less than a week's stay in the hospital. I'll stay a little plump because I've experience the wasting syndrome due to Addison's first-hand. It was scary. For nausea, I take Zolfran, a miracle drug. I don't take it unless my nauseousness gets unbearable.

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Several times I have experienced the darkness of a full Addisonian Crisis, and I have been in this serious life-threatening position several times simply because my body had become VERY ILL with Addison's before I was diagnosed; therefore, it took a long time to get stabilized.

Also, I've had other surgeries, such as cervical spine reconstruction that has left me with metal plates, screws and bolts that sometimes rub against the tissue in which it's enclosed and the ends of the screws sometime visibly press against my skin. Of course, this means there is swelling, pain, and stress upon my body which is NOT a good situation for a person with Addison's Disease. If you have complications that aggravate your Adrenal Insufficiency condition, try to be aware of these so you can be prepared as they create trouble. You can't stop these things from happening, but you can be prepared to react faster when they occur.

It takes some meaty experience to learn how your body operates with severe Adrenal problems. My adrenals are shot...they are withered little bits of glands taking up space in my body, not earning their keep. These glands are necessary for a person to live. In the not too distant past, this disease meant imminent death. Today, we have synthetic replacement, but the meds themselves can cause serious complications over time.

This disease is not to be taken lightly. As for replacement therapy, my synthetic replacement must be perfectly administered for me to not have problems and this is not always possible. Perfection with our bodies is a dream-state. But, we can be on a schedule, take our meds as required, but the trick is to recognize additional symptoms that you are in trouble before you are too far gone and unable to do anything about it yourself.

During a FULL crisis, I experience these symptoms:

1.  Extreme weakness and lethargy: I can barely hold my eyes open because my blood pressure is dipping to the low point of barely being able to be registered by medical personnel.

2.  Increased Heartrate: As my blood pressure falls, my heart rate usually increases significantly because it's trying to get blood pumping through the vessels that are weakly moving the blood along.

3.  Slurring:  As an Addison's Crisis is well underway, I may be able to initially say, "I'm in trouble, get my meds," or "I am not doing well." If someone is around, I at least try to alert them to my oncoming symptoms before I'm unable to communicate.

4.  Dizziness:  This kind of goes with the lethargy. But, I can first experience a huge wave of dizziness that doesn't go away, then everything else follows. These are dangerous moments because they put me immediately into a position of not being able to walk, talk, etc., so I cannot express my dire situation to others who think I'm simply taking a nap. It can be extremely frustrating since you'd like to scream out that you're in trouble.

5.  Gasping for air:  This symptom comes after I am in such bad trouble that I am beginning to have moments that cause hospital monitors to register a Code Blue. The air seems to exit the lungs and I literally cannot draw in another breath without waiting an excruciating long period of time, thinking that this is it, I can't breathe, and I struggle terribly. Fortunately, I've been given multiple second-chances...pure miracles. I am a fighter, but I don't know if that really helps you to live longer, sometimes it's just not our time to go yet. Regardless, for this symptom, you do NOT want to hit this stage.

By the time I've hit severe crisis symptoms, I am beyond being nauseated. There are more pressing symptoms that take charge of my body. I remain coherent for a long time, usually even as my body is unable to respond or to move as I want it to. It's like you are trapped, but a person living with someone with Addison's should be VERY AWARE that the person going into an Addisonian Crisis may look unconscious, but they might very well be fully able to hear everything you are saying and to hear all that is going on around them.

After having my husband was forced to call 911 a few times and after I've been in this state of going comatose, I would hear all of the hustle and bustle around me, even the paramedics voices sounding alarmed as they realized my vitals were failing and I could not tell them that I could hear everything. I wanted them to still keep me posted...to TELL ME what they were doing to me, if possible, and to remember that I was still in there, somewhere.

At home, most often, I am aware enough when I'm going downhill to quickly get a double dose into my system as I am headed into a quick Addisonian downfall. I actually begin with taking my pills and I sit down, relax into the symptoms instead of fighting them and the medicine kicks in to help pull me out of it. I've done this so many times that it's not possible to count how often I'd been in this situation. My doctor tells me that my body makes it extremely difficult to regulate Addison's disease and we all know, if you have this condition, there is NO MONITOR that will tell you your levels in advance so you can take medicine more leisurely. For us, we must KNOW our bodies and learn to recognize the symptoms approaching.

It's been a few years since I've been in the hospital because of an Addisonian Crisis. Now, I've been hospitalized for other conditions and have had surgeries that have CREATED an Addison's issue. Yes, I'll be IN THE HOSPITAL and my file will be marked largely with this condition, and I often find that medical staff still does not really grasp the concept of how fast an Addisonian can crash and hit the cardio-pulmonary shock stage. Most medical personnel have never seen an Addisonian crisis in action, so they can't imagine this happening except to a traumatically injured victim. It doesn't seem possible for it to happen to a patient who looks fairly okay, for the moment. For an Addisonian, that can change in a snap. You feel "funny" one moment and the next you are unconscious and dying. For us, it happens. I have been that patient who has provided an education for many doctors and residents.

I've been in the hospital, in the middle of an Addison's Crisis and the head Endocrinologist rushes his residents to my room STAT and they all stand at the foot of my hospital bed observing me in a state worse than a quadra-pelagic as I am unable to move my body, I can't sit up, I'm slumping over in the bed because the nursing staff has not even recognized how quickly I've deteriorated; my body is so far gone that I am unable to communicate. Worse, the rest of me, my insides, all of it is slowing down and about to call it quits.

The good part about Addison's, unlike the quara-pelagic that never has a second-chance, is that you have a chance to resume your ability to sit, stand, talk, and walk. That is...IF you live through the crisis.

They monitor my disappearing vitals, each recording it on their own tablet, then as they administer the injection, they stand and watch over the next 5-10 minutes as I am able to slowly pull myself back up into an upright sitting position with stabilizing vitals improving drastically, quickly before their eyes, and I'm able to finally talk, so I say, "Thank you, I really needed that." Before they leave my room, I'm taking sips of my water and am chatting with them about their questions.

That endocrinologist said to his residents, "That'll probably be first and last Addisonian Crisis of that severity that you'll ever see, but at least you'll have a better chance to recognize it."

Thank God I had an endocrinologist on staff who recognized the danger himself because I've sadly discovered that many endocrinologists do not understand how rapidly their patient will decline. They know it can happen from textbook knowledge, but the real world experience seems to be shocking to them or as if they can't believe they actually have an Addison's patient on their hands.

I've had several different episodes, but this particular terrible experience is one that I had DURING my hospital stay, and my file was fully recorded about this condition. I'd actually just had a serious cardio-thoracic surgery and was in an extremely dependent state with my body chopped to bits and a rib removed. I had a huge incision across my neck/thoracic area with drain tubes coming out the top of my shoulder with the drain line running a couple of feet into my body. Disturbing.

My body was under tremendous stress. The staff handled the surgery well, but they had not handled the stress doses properly and I was, of course, already "out of it" because I had just endured major surgery. My mother was alive during this time and she was in the room as I went into an obvious Addison's Crisis ---- but we'd already been telling the nursing staff that I needed my large stress dose. The next stress dose was not properly documented to be administed in the file, so the nurse said she had to contact the doctor. Of course, this caused precious seconds to tick away with me left untreated and declining further. The nurse did not understand that this was NOT a "let me go phone the doctor" kind of moment. (I wanted to make it clear that this was NOT the nurses' fault; the doctors should have put clear instructions for stress dosing and notes of clarity about the urgency needed, especially because I'd provided all the information before surgery in my pre-admissions appointment.) But, before the day was over, she'd never forget Addison's disease and she'd be in my room as nervous as heck, visibly shaken. I felt bad for her; she told me she'd been trying to respond as calmly as possible because she actually didn't know what to do, I was the first Addison's patient she'd ever had...even as a long-time nurse in Houston's notorious Medical Center.

No stress dose arrived and I was struggling to breathe and could not hold my eyes open for more than a few seconds at a time, but I could still hear everything going on around me. I prayed. My mom actually buzzed the nurse again, "We don't think you understand how urgent this is...we need the doctor now." Still we waited.

Finally, as I began to totally lose consciousness, my mother stepped out of the hospital room, into the hall, and began to yell at the nurse (VERY OUT OF CHARACTER FOR MY MOTHER) and she was yelling, among other things, "She's going to die; you have taken too long; we're going to lose her!" My mom was in a panic. I could no longer talk or do anything. I was in the Ragdoll state of existence.

That's the point where the head endocrinologist came bursting into the room and the rest you heard already. It was proof that this disease requires an extreme pro-active stance, you can't even think that being in the care of medical professionals is enough. If you end up like me, under harsh surgical conditions and dependent on others to provide life-saving treatment, then you might be in trouble if you don't have an advocate watching over you. On this day, my mother had been my advocate. Other times, numerous times, it was my husband.

But, my health is my business. Mainly, I am the one taking care of my condition and living a good life because I've learned to recognize various symptoms. I stay aware, if I don't, I pay the price and I've learned long ago to snap to it and to not think that I could depend on the doctors to keep me healthy because they can't do it. My daily health is solely my responsibility. And I take it very seriously. Then, I keep living to the fullest, without fear, and I savor every good moment that comes my way.

#86 - Learning to Edit Your Life

I am 43 years old, but ten years ago I learned to edit my life. I chopped out the nonsense and the frivolous and removed as much heartache stimulants as possible.

After falling severely ill for months and then coding while hospitalized at 33 years of age, I had plenty of time to lay in bed, week after week, and this forced me to do some serious thinking. It's amazing what you will think about when you have nothing else to do.

Of course, my body was so ill and my organs, including my heart, were starting to fail, so I had vastly different thoughts than I once had with a healthy body. I learned to be grateful to simply stumble my own way to the bathroom so that I could enjoy a very private moment IN PRIVACY!

Things in my life began to shift. I had been a high-earner in the family because I owned and operated a business that provided litigation support to top law firms in Houston. I worked for the Big, Big Dogs. And, this meant a big, big invoice. I worked hard and earned large. For nearly ten years I went strong in this business. But, as my body began to fail me...my mind switched gears and the fast-paced life was suddenly not as thrilling. After all, what is the point of making a high-dollar living when you can't even live healthy enough to enjoy the fruits of your labor?

I would lie in bed and face the fact that I was living a life that had been imbalanced. I felt as if God were taking me by the shoulders, shaking me hard and telling me to head another direction.

Truthfully, the business had taken a toll on me. I would sometimes work on one case for two years and the details would be so incredibly gruesome that I'd end up on the floor in my office in a puddle of tears. I think the time-frame required for each case made it more challenging...it wasn't a blip on my life radar, these cases became ingrained into my mind and heart. After ten years of witnessing horrible tragedy, loss and heartache, mostly due to very freak accidents, I think a toll was placed upon me. Now, there are people like my husband, Deputy Dave, who sees horrendous things day in and day out in his job at the Sheriff's department. He's been on the job for over 22 years and he's seen things that would turn your mind and your stomach inside out. But, I learned that my stamina for such gore is not as stoic.

I sent letters of regret to all of my clients before my as my health took the serious decline that would force me to shut off most communications with the outside world. These letters went out during the time-frame when I knew that my body was not cooperating and that something was seriously wrong. I'd realized that my slow shift to work on files in bed had become a full-time ordeal. I had been slowly adapting to my weakness until it became harshly distinct. Soon, I was too weak to feed myself. I could feel my body dying; it took what seemed like forever to get my Addison's diagnosis. For about a solid year, I was in a constant state of significant and consistent decline before a beautiful doctor ran the magical test that would allow me to continue living for an extended period of time.

Those resignation letters were a necessary part of my healing. Accepting my situation had not been easy. But, I could not run a business if I couldn't even feed myself. Looking back, perhaps I should have sold the business or given it to a friend. But, the training would have taken long months that I didn't have to offer. Any energy that I had available was precious and would be certainly directed toward my husband and children. Since there was very little energy, this usually meant a brief daily conversation with each. Lying there, unable to do my normal "mommy" things caused me to mourn my position in life as a mother.

My oldest daughter - back from Germany.
My sister took these shots for her high-school photography class.

More than anything, I missed the little moments when I could fulfill my role as a mom and a wife.

Me holding Stefie.

Some mornings, I would give myself this brutal "pep" talk and would head to the kitchen as I was fighting sudden moments of blacking out. I wanted to make my daughters their school lunches! My vision would come and go. My hearing would disappear. Spots would appear before my eyes and I'd gasp for air. But, I would sometimes get those lunches made and in the brown bag with my little cartoon drawing on the side for them to enjoy. Making those lunches made me feel as if I'd won an Olympic Medal. I cannot even express the emotion I would feel at knowing I did something so simple for my daughters...a valued mommy moment.

My oldest daughter and I at a football game together...we're
hot, sweaty and stinky. A good old Texas football fan moment!

I didn't miss the business; I didn't miss working with high-powered personalities; I didn't miss the gifts sent to my door for a job well down and I didn't miss the income. I only missed being able to walk along the beach holding my husband's hand and being an active mommy. That's it.

Me and my hubby --- not too long after my cervical spine
reconstruction, so I am no able to move my head much.

So, I quickly cut out anything that would interfere in my home-relationships. This meant that the large circle of friends that I had enjoyed was severely cut back to about two friends who really tried to understand my situation. The others were quid pro quo friends who expected something for something and I had nothing left to give. These were the days when you discovered who really loved you for YOU, not for what you did or could do for them. I finally learned to accept my husband's love for me being me and not for the hoops I'd constantly jump through as a wife.

The three most important people in my life.

In my time of severe illness, the house-keeping went down the drain. I'd once been a perfectionist. A newspaper could not even lay on the coffee table for a full morning before I'd chunk it in the trash. I often sat on my rear on the floor to hand-clean my tile and wood flooring...scrubbing the grout with a toothbrush. My hands would have chemical burns from the deep cleaning I did every week. Ask me how my house is cleaned these days? These days, if I try to hand-scrub the floors, I probably won't be able to get back up! Today, I keep things manageable, but definitely not to my former standards. If we have a planned gathering at our house, we usually must have a sprint or a hurricane cleaning session to whip it into shape.

My daughters both told me that they thought my illness was the solution to my over-controlling need to have the perfect home. But, I'm not so sure they were right. Of all things that have changed, I do miss having a perfectly kept home that is constantly ready for any guest who might stop by. I can't fib...those days were nice. Nowadays, I cannot keep up. In our large home that we now live in, I basically cordon off rooms and no one lives in them, so they stay clean! That's the trick everyone...don't let people LIVE in the room you wish to keep clean.

Another area of life editing was our money habits. Since I had been earning such a good living, we had ample cash at our fingertips whenever we wanted to do anything or buy anything. Becoming so sick and seeing the savings and liquid funds drain away like dirty dishwater caused us to put a halt on the spending. Then, we applied the emergency brakes and didn't spend any extra money. But, I was happy. Broke and happy. Well, we weren't entirely broke, but it felt like it after what we had long enjoyed. Being on a tight budget was fine with me. Besides, I was too sick to do anything anyway, so this part was probably more painful for my husband and children. If you are only able to lay in bed, your needs are reduced to below the basic necessities.

Before I became ill, I had a TV in my office and would sometimes indulge in watching a soap opera as I filed or completed a mound of data-entry. I had loved watching "All My Children" because it had been a family tradition. I could even play the theme song on the piano. After I battled for my life, I could not stomach another soap opera. This was amazing because I'd grown up with a great-grandmother who would threaten my little existence if I interrupted her soap opera break. But, the illness made me dislike soap operas because the TV personality lying in the hospital bed dying for the tenth time was a drama on TV, but for me, it had become reality. I didn't need to watch such drama; I was living it. I decided then and there, during this time in my life, that I did NOT need to add any more drama to my life because MY LIFE HAD BECOME A SOAP OPERA.

I also learned these things:  to listen more closely to my mother, to savor the sound of my children laughing, to enjoy moments of not gasping for breath as my heart beat out of control, to be in the comforting arms of my husband, and to appreciate a beautiful friend who would come over simply to dust my house.

I also learned that no matter what happens, everything will be okay. This was a powerful message I received the night I coded and it set me free. Really free.

Life editing meant that I had to let go of many old ideas, actions and beliefs so that I could face a new direction in life. My "recovery" did not amount to what I had expected...it actually meant that I would learn to live with a hugely changed body that would never regain its previous strength and that continued to face massive battles for survival. My idea of "recovery" also was edited; I'd previously thought it meant that you recovered to find your old self back again. But, I was very saddened to have a critical-care doctor plainly tell me that the old me was gone forever and to not have false hope that I'd recover back to my old self because it wasn't possible. It was explained that some people can make a "full" recovery, but my body had suffered such trauma for a long period of time that the toll would be permanent. I will admit, I was devastated by his comments. I was angry at him and even thought that he was wrong because he didn't KNOW me. He also said it would take at least one year for my body to even stabilize. I could not believe my ears. But, he was right. Doctors are not always right, but he knew what he was talking about and I was in for some hard lessons. Sometimes a recovery is not what you expect, but you can learn to be stronger in some areas even though you are weaker in others. So, I am not fully recovered in one aspect and probably will never be fully "recovered" in a medical standpoint, yet I am stronger than ever in other aspects.

Living life to its fullest, without fear.

Mostly, I learned that any one of us can be on top of our mountain and suddenly find the earth crumbling beneath us. As we tumble and tumble downward, our body battered and broken, we might have flashes of what we have lived through and what we still yearn to do, but we are helpless and without the promise of a second chance. The harsh truth is...LIFE HAS NO PROMISES. We feel entitled for a tomorrow and for a healthy future, but there is no guarantee that you'll get it. For some reason, I have been given many second chances. And, I'm glad to say that even though it's taken me years, my days of facing the future without solid plans and without long-term goals are gone because I have recovered enough to feel safe again...enough to think about a year or two down the road. However, I know very well that all my "plans" could be yanked out from under me. It's happened a time or two before due to circumstances beyond my control and it would happen again. We can't always control life.

If your earth has crumbled beneath you, then I understand your journey to re-discover your path in life. Maybe you're just trying to survive and that is good enough. I've been there. My advice is to take it minute by minute. Add up the good moments and focus on those instead of what you have lost.

For a long, long time I would fall asleep with very poor vitals, knowing that I had a good chance of not making it through the night. I'd close my eyes with sadness, not knowing if my body would be able to sustain itself through the dip in my vitals that were already precarious. But, you must sleep, so I'd give in and close my eyes, saying a prayer and hoping to see my family again in the morning. Then, as the morning light streamed into the room and my eyes would blink open, I'd often be amazed and stunned to find myself breathing and living, alive for another day. Day by day...that's all we're given. If you've struggled to survive for a prolonged period of time, then you learn the importance of each new day.

So, I am thankful for today. God willing I'll be given many more days and I'll continue to learn lessons from my painful experiences.

That brings me to my final life edit...do not waste the important lessons in your life. Don't let the passing of time banish them for your memory or weaken the bold impact that life changing events can prompt in our lives. Don't spend time looking backwards, try to move forward with your new set of circumstances as soon as possible. Acceptance is a critical word for those who need to do some life editing. You can't start life editing unless you accept your situation and do not waste new opportunities while hung up on old mindsets. Build a new life! Is it easy? Heck no! But, you can take your new life, even if it's still in crumbles and you can move forward.

Actually, there's a verse in the Bible that tremendously helped me with this last struggle and it says something like this, "If you wait for perfect conditions, you'll never get anything done."

Don't wait. My "perfect" life is a distant memory, but I will take today and make the most out of it, even if that means I spend the day tucked in bed reading a good book and doing some blogging. My idea of "perfect" is still morphing. Life editing is not easy. Learn when to employ strike-outs, purges or re-arranged your thinking. And you'll be fine. I'm fine. I'm a happy gal on the move. Keep moving farther away from your most painful times and you too will be a new person with a new direction...the adventure awaits.

#85 - Doctors, Nurses, Waiting Rooms and Heros

I am so thankful for the good doctors in my life. Of course, I've had mostly extraordinary nurses in my history with Addison's disease. The waiting rooms are not so much fun, but I've learned to make the most of them by bringing my journal and a good book...just so I can alternate between the two.

Today, my youngest daughter and I went to the cardiologist together. I love my cardiologist. Well, I love him in the manner that is fitting of loving someone with great respect and admiration after they've saved your life, literally.

Dr. Nadir Ali saved my life in 2001. After visiting too many clinics, doctors, hospitals and on and on and on, for many long months, I ended up in the hospital and in the direct care of Dr. Ali. After I coded, he used his brain to put my symptoms together and that determined cerebral power led him to rapidly order very unique tests to determine my rare medical condition.

Within hours, I was being given life-saving medicine and the end of my life was gratefully extended for much, much longer. In fact, I am approaching my ten year anniversary since my diagnosis. Within two months, it will have been ten years since Dr. Ali went beyond textbook knowledge to explore his impressive brain for a answer befitting a true physician, an authentic healer and remarkable man.

Anyway, today, my daughter and I drove the entire way to the cardiologist's office, but we were told at the receptionist's window that our appointments had been cancelled, as of last week, after the Dr. decided he better hurry and take a trip with his kids before school resumed. Wow, he is a life-saving physician and he actually takes time out of his extremely hectic life to take a vacation.

As a doctor of his caliber, it must not be easy to fit in personal time. I'm sure he looks at all the patients who are in such bad shape and he must feel, at times, that he simply can't keep up. Then, I hope he remembers the time when he saved the life of a 33 year old woman who had two young daughters and a devastated husband watching their mom and wife disintegrate before their eyes...without any answers...until Dr. Ali came on the scene.

I wonder if his children know that their daddy can't save everyone, but he is a hero to many people. A fireman running into a burning building to pull out the child hiding in the closet is a hero. The police officer who goes into trained, ingrained action after seeing the criminal attack a victim is also a hero. The soldier on the battlefield who gave his life for the concept of freedom is a hero. And, the doctor who walks into a place that is not only for those who are healing, but a place for people he sees daily in their suffering and dying moments while he tries to make a difference...is a hero. Do his kids know that they are vacationing with a hero?

Probably not. To them, Dr. Ali is not a hero-extraordinaire...he must check his title at the front door of the house and simply be called "Dad."

Because Dr. Ali saved my life, I was able to be with my
mother during her final moments of life in 2006
after she'd lost her battle with breast cancer.
Here is my mom and dad at M.D. Anderson. Shortly after,
she joined God in His house at 56 earthly years of age.

This is the day our oldest received her Aggie Ring.
A day made possible because my disease was discovered.

With my increased strength, I could make it to
watch my daughter perform her Officer duties on the
school's dance team. She danced like a mighty angel.



Then I watched
my youngest graduate from high school.



The years brought greater rewards as I got to watch
my oldest graduate from Texas A&M in record
time with her degree in Biology.

These are the days that make parenting a dream.

Back to my daughter and I standing in the waiting room at Dr. Ali's office...the receptionist informs us that our appointments had been cancelled by a phone call made days earlier; we were flabbergasted. My daughter was ready to melt to the floor; she'd returned early from a trip to Florida to see Dr. Ali. Yes, the man is THAT good. She stood there stewing, thinking of her incredible moments swimming with the dolphins and she was ready to throw a two-year old fit...What? Cancelled? All this trouble for NADA!?

Me and my youngest...obviously not in a waiting room.

The receptionist calmly and professionally consults her computer database, "We are so sorry, but we show here in the notes that you were called and a message was left to inform you of the cancellation and to try to reset the appointment for next week. The number the nurse called to leave a message is ***-***-**** and she dialed that number on July 29th."

Yes, that number is MY cell phone number. My daughter's wrath turned toward me. She glared at me with her blazing blue eyes shooting darts my direction. I shrugged...OOPS...Did I mention that I am HORRIBLE about answering the phone or checking my messages? I might check my messages once every five weeks. Plus, a few weeks ago, I took a shower with my phone. It was stuck in my bathing suit, between my cleavage and I stepped in the shower absentmindedly to drench the phone along with my bathing suit and body...doesn't this happen to EVERYONE every once in a while? Cleavage can be a dangerous thing.

About the phone avoidance thing --- this happened to me after I became very ill with Addison's disease. I quickly learned to avoid the phone because I simply didn't have the energy it took to talk. And, I didn't want to talk about it. I'd already seen too many shocked expressions after they'd visited, I didn't want to prolong the emotional agony by hearing the pain in their voice. Also, callers could hear the marked weakness in my voice and I got tired of constantly being reminded that I sounded and looked as horrible as I felt. There was no more "fake it till you make it" left in me. So, I withdrew, in a big way.

With my disease, my family entered a world full of doctors, nurses and hospitals. Daily, the mail was full of insurance papers and billing records for every diagnostic test, hospital stay, clinic visit and doctor consultation. My arms constantly looked black and blue, even though I do not bruise easily. I even had hospital stays that required IV lines in my neck and chest and blood to be withdrawn from the back of my knees because my excessively low blood pressure would not allow regular veins to stay open.

The life I'd known, which had been relatively free of seeing a doctor except for a yearly Well Woman exam was gone, gone, gone.

But, during my recovery, I became more discriminating toward the level of care I received from a doctor and medical establishment. I can tell you that all doctors who followed Dr. Ali had a HARD ACT TO FOLLOW. If they were lacking, then I professionally stated my case, perhaps taking my business elsewhere. And, Addison's disease DOES result in business for the medical field. A patient with Addison's disease is likely to require moderate to heavy medical treatment, for life. We become a money-making machine for the medical industry, so I decided to start stepping up and calling out the shady treatment episodes.

My oldest, shadowing Dr. Ghosh during brain surgery.
Another remarkable, beautiful doctor in the Houston area.

Then again, the entire ordeal and massive experience I've gained with doctors, nurses and waiting rooms has forced me to recognize the above and beyond excellent care of so many who have helped me continue to survive. I've had many incredible medical professionals who have shown their deep capacity for tenderness toward humanity by their delicate, forceful, straight-forward, kid-gloved, harsh and soft caring treatment, as necessary. For those who knew how to find a balance...I am thankful for your chosen profession.

And, I continue to be connected with doctors, nurses and waiting rooms. In fact, my daughter and I have tag-team appointments re-set to see Dr. Ali next week. He is well worth the wait. I will be especially grateful to sit for as long as it takes in this particular waiting room.

In fact, I'll be dropping off a few good books to donate to his lobby.

I'll wait and I'll read. Leisurely, I'll read and watch the time tick slowly by until my name is called. I can spare some time for Dr. Ali, after all, he is the one who made sure that I had more time to spare.

Amazing times have multiplied since my
diagnosis, and I thank Dr. Ali for helping me
to continue this beautiful life.