Monday, February 28, 2011

#38 - Suzanna's Question; My Miracle

Suzanna is an adorable blog friend, and we regularly read each other's blogs. Hers is and you can easily find her under my "Followers" reference. Suzanna is creative, interesting and she has Addison's disease. That gives us an instant connection on a deeper level.

Recently, she posted a comment on one of my entries and asked me a question, "What was it like for you when you were first diagnosed?"

I decided to try to answer this question the best way possible. My "after" being diagnosed had so many changing hurdles over an extended period of time, but right now I'll address how life treated me immediately after my diagnosis.

Actually, I had become critically ill because I had been undiagnosed for a very long time. My health had deteriorated to the point of not being able to sit or stand. I could barely lift an arm and could not even feed myself a full meal. I could only eat a few bites, then I would drown in a strange exhaustion that could not be explained. Once hospitalized, for medical tests, I had to be moved from the hospital bed to a gurney and wheeled while lying down to the next spot for testing. I was very, very weak. Breathing had become difficult. In the hospital again, during the Fall of 2001, I coded. The cardiologist assigned to my case was pretty brilliant; he was the first doctor to put all of my symptoms together so he could order the correct tests and that's how I was finally diagnosed.

Dr. Ali had some of these medications administered to my IV line and within thirty minutes, I was able to walk - with the help of a physical therapist. So, right after my diagnosis, one of the most beautiful moments I remember is that walk I made around the nurse's station as the physical therapist held firm to the loop on my back that was attached to the belt around my waist that acted as an aid for the therapist to help steady my walk. But, I felt like breaking out into a run. I felt so strong and alive and almost "normal." It had been so long since I had felt "normal." Perhaps a year had passed with my body slowly weakening; I had been adapting to the increased weakening, without much notice until my body would not cooperate at all any longer. So, this day of being able to walk around was a moment of triumph.

Back in my hospital room, I was able to sit up in bed by myself. My lunch was brought to me and I was able to eat by myself and the food tasted good, and I could swallow and hold the fork steady. Before my diagnosis, eating was exhausting. Later, I discovered that the digestion process itself had been a stress my body could no longer endure, especially since I had no reserves. I was completely depleted. Once the hospital got my AM Cortisol levels back, the doctor told me that he did not know how I managed to stay alive for so long - he said I should've been dead, but perhaps my addiction to V8's had become my life-line...the needed sodium probably pushed my blood pressure up just a tad to sustain my heart and lungs.

I was sent home with three medications: Florinef, Prednisone and Klor Con. Later, my assigned endocrinologist changed the Prednisone to Hydrocortisone because he said it was less harsh and better for a patient needing long-term treatment with steroids. The Klor Con is a potassium supplement, but this area leveled out better as well over time with the other medications. Truthfully, the doctors did not know what to tell me about dosaging. All the doctors appeared a bit frazzled. Finally, my endo pulled out a resource and read it to me...stating 30mg of HC to be the "standard" for daily dosaging. I asked him if that recommended dosaging would be the same whether you were a 260 pound man or a 130 pound woman? He said, "Yes, it's what we've got for now." I realized that I had a major issue in front of me - a disease that had little documentation and an across-the-board "recommendation" that amounted to a little understood disease. The endo suggested that I break my daily dosages into two dosages, but that I would have to simply go by trial and error for dosaging amounts and times. I'd have to figure out what works best for my body. It was confusing. My endo explained the normal process of cortisol release for a body who has working adrenals and this did help me to approach my dosaging with some logic. Early morning, need more...evening approaches, tapering is required so the body can actually get some between, that is the stickler.

Immediately out of the hospital, for a couple of weeks, they initially kept me on at least 60 mg per day of steroids because my body had become very weak and sick from being misdiagnosed for such a long time. However, it turned out that I definitely did not need the "standard" dose of .1mg per day of Florinef. In fact, I experienced dangerous side effects starting with the vessels in my eyes bursting. It hurt terribly and I could barely close my eyelids over the vessels that had burst, it felt like tiny rocks in my eyes. I was informed that my internal pressures were too increased and that the vessels were imploding. Lovely. I took some time to truly consider what this meant as I looked in the mirror at my bloody appearing eyes and knew the seriousness of the situation. So, I cut back on Florinef, drastically. I did not require much Florinef, perhaps because the Klor Con helped to offset that end and I was still drinking V8, mostly out of habit and of fear of quitting.

Today, I take a half pill of Florinef and it seems to be a perfect dosage for my body. I always keep Klor Con on hand, taking maybe a couple per week, more if I am out in the Texas heat. But, I did suffer pretty badly before we finally figured out that it was the Florinef making me feel as if my head were going to explode or pop off. I had one Dr. argue with me about my dosage of Florinef, he was one of those "textbook boys," but my first-hand experience had taught me a better lesson...dosaging often depends on the person and their lifestyle. Every person is unique; Addison's is one of those diseases where you must fine-tune your dosaging with the assistance of your doctor. Turns out, for my situation,  I was right to reduce my dosage and my regular endocrinologist's testing confirmed I was on track. I leveled out and felt incredibly better. The vessels in my eyes no longer were blown up fully and I didn't look as scary! After the Florinef was adjusted, I was on the road to feeling more like myself.

I have never regained the same level of strength or endurance I had before Addison's Disease, but I do believe that is because other things with my health were simultaneously going on as well. Addison's Disease added a definite complication to the other conditions, but I am pushing forward 110% at all times. There are days when I feel as if I am Superwoman and other days I feel as if I am too worn out to be worn out.

To this day, I am thankful that my diagnosing doctor crossed the finish line with his diagnosis of Addison's before death could get there first. Every day, I do my best to live right and to stay on track so that I have a better chance of staying ahead of Addison's. After my diagnosis, life did change. Oh, it certainly changed in a BIG way because I still had a rough road ahead of me and the damage of being ill for so very long could not be reversed. Ramifications hit from every side. Yes, every direction of my life and the life of my family was to change in big ways.

When I was first diagnosed, I was incredibly thankful to be given an answer to my body's failing condition and to have a miracle medication mix that allowed me to go from being near a consistently state of being comatose to where I was up and walking. I thanked God for every step toward returning health and to me getting back to being a Mommy! Of all things I had missed when so very ill, it was the little things I did as a mother with two young daughters...making their lunch, driving them to school, dancing around the living room with them, laying in the driveway with them for some awesome cloud watching and all the other "little" moments I missed when trapped in my body and unable to make it do what I needed or wanted. My diagnosis surely reminded me that miracles do still happen and that our bodies are an example of God's handiwork. We are a miracle. Life is a miracle. To put one foot in front of another is a miracle, to smile is a miracle and to KNOW it is all a miracle is what most changed for me after my diagnosis. 

Texas - Gulf of Mexico - Sunrise
Captured by my husband & best-friend.

Thursday, February 24, 2011

#37 - A Haircut

Yesterday, I broke down and finally got a professional haircut. For the past several months, I've been cutting my own hair and doing a bad job of it. My daughters roll their eyes at me as I watch do-it-yourself-hair-cutting videos on-line. They refuse to be a part of my effort. I even bought a nice pair of scissors from "Sally's" that are strictly for cutting hair. But, even with all of the best tools, I stink at cutting hair, especially my own.

For the past couple of years, I've completely rebelled against any kind of hair color or highlights. Going all natural was my focus. But, as the years have passed, my hair grew to a wild state and the grey became starkly visible. On day last month, my husband and I were shopping at Sam's and I went to the bathroom. Before leaving the bathroom, I walked to the basin to wash my hands and when I looked up into the mirror with the harsh, bright fluorescent lighting overhead, I stood there frozen and in shock. Was that me looking back? My hair wasn't only grey, there were bright white lines running all throughout my head of brunette hair. Alien strands were taking over! I had envisioned myself with this graceful, elegant flowing white hair one day, but the look that was staring back at me was definitely NOT part of my mental picture.

When I walked out of the bathroom, I went back to shopping with my husband and he knew something was wrong. He kept asking and I kept blowing it off. Finally, I confided that my reflection had shocked me. He hugged me and told me that he loved my grey hair, and that he loved my natural beauty. Very sweet, but it didn't erase the image burned in my mind. I wasn't ready to see myself looking quite that bedraggled.

Later that week, my daughter and I were in the lobby of a local hospital waiting for copies of my medical records. She was chatting away on her IPhone with a soldier calling via satelite that she supports in Iraq; she was getting the latest list for his basic needs...writing paper, envelopes, stamps, dry soup mixes, hot chocolate...she was repeating his list back to him as she walked over to where I sat nearby. She began to run her fingers through my hair, a normal thing for her to do when she's on edge. Her eyes grew wide and she said, "I am standing here looking at my mom's hair and she's suddenly got a ton of white hair out of no where." She began laughing and she and her soldier friend began to talk about loved ones with grey hair, then she suddenly burst out with a laugh, "No, she's only 42!" Obviously, he thought I was NOT in my 40's.

Maybe the "old momma" is expected to have a head topped with completely grey hair. However, I kept hearing her words, "She's ONLY 42!" and I realized that she was right! I didn't need to completely succumb to the naturalness of my condition. There is a remedy and it's called HAIR COLOR! In addition, I didn't need to be so controlling as to think that I could be my own hair-dresser! I could let my old friend, Sonia, do her magic and her job and I could be set free from my cursed pair of Sally's scissors.

So, last evening, I spent three hours with Sonia in her private, ritzy salon. She knew this was a big step for me. Most often, I go see her after I've had my own chop sessions with my hair, so none of this is a surprise to her. She always manages to fix my self-induced disasters. She went over a few color swatches with me and decided that just a slight adjustment was needed - she left much of my grey natural hair color in the mix, but she blended the color throughout to soften the harshness of my aging changes. As for my aging changes...I do think that the burst of white on my head is also due to the medical traumas I have endured. The difficulties with my health seemed to have acted as fertilizer to the white strands. I was ready to not be reminded of this each time I looked in a mirror.

After her scissors flew into action, I looked into the mirror and felt a huge wave of relief. THIS woman looking back at me was a better reflection of who I felt to be on the inside!! She just needed some help to be revealed.

Through my near 25 years of being married, my husband has seen me with every hair color imaginable. We've joked that he's been with a brunette, a blonde, a red-head, a jet-black, a grey, an orange, and even pink-haired woman. It's a good thing that he is as adventurous as I am. He loves me as I am, no matter the hair color. After all these years together, he really sees ME, not the PARTS of me. When I walked in the door, he gave me a huge smile and he then jokingly searched for some grey strands and I told him, "There still in there with the rest of me."

My Husband & My Precious Niece

Wednesday, February 23, 2011

#36 - Thankful to be Thankful

Having Addison's means that there are some days when the body and mind won't jive. Today, I feel so sluggish and as if I am moving in slow motion. Each day is unpredictable. I'd love to have full energy every day, without much interference. Before Addison's, I did have that kind of life. Every day had been a go-getter day full of vibrance and seemingly unending energy. These days, I am careful about how I plan my day so that I can have the best success. And, I must have flexibility to change my plans according to how my body is cooperating on that day.

Like many with Addison's disease / Adrenal Insufficiency, the mornings can be a problem. The body can feel as if it is moving through mud and that it takes too long to get "warmed up" and in action, even with early-bird dosages of our meds. It would be so nice to say that our medication is an automatic "fix" to those issues, but for some of us with adrenal conditions, it is not enough, especially if you are combating other conditions that exacerbate the adrenal issue. If you have other medical conditions, then your body can stay in a "stressed" mode or can sway in and out of it, making the adrenal issue difficult to manage.

Having an attitude that constantly fights to live to the make the best with what you've got...that kind of positive attitude can be invaluable. Like others in my situation, I get down and worn out. Sometimes, I feel like crawling under the covers and hiding from the world so I can re-charge, but that rarely happens. My mother used to say that to combat a fierce medical condition and the depression that can come with it, you need to do the OPPOSITE of what you feel like doing. If you feel like hiding from the world, then you REALLY need to get out and socialize. It's not easy. It goes against all that feels natural to do the opposite of what we crave. Becoming too isolated is not a good thing; I have a tendency to lean toward isolation, so I constantly take active measures to fight against it. Sometimes, I must force myself to do something socially so that I do not withdraw too deeply within my shell. Compared to many people, I have an extremely active life, but that is because I have a rather large family that is very involved with each other. I also have awesome friends who are as close to me as any family member. Yes, I am blessed.

Still, through the bad days, I try to remember how blessed I am in this life. Even with limitations, my life is full and rewarding. Illness cannot zap my zest and passion for life. I still see beauty around me every day. There are always reasons to laugh and you can find joy in all things. If you give up the search for the joy in life, then you are giving up. Don't do that. Be good to yourself. Let yourself feel joy at the simple things. Even if you are bound to bed or to a chair and have an accessible keyboard, enjoy the world open to you at your fingertips. Try to develop a strong habit of being thankful for what you DO have. Being thankful is one of the keys to being content and to prevent a roaming soul. For sure, longing for what you do not have is a solid way to find discontent and misery. Don't waste you time with that angle.

HOWEVER, if you have a day here and there with a need to whine, go ahead and do it. Whine and get it out of your system! Don't beat yourself up for having a bad day because sometimes those days help us to re-adjust our attitude. If we walked around constantly declaring that we are without any problems, then we would be lying to others and to ourselves. Learning to talk yourself out of a bad mood is an art that needs practice. I've been around people who are in such a bad habit of complaining about every tiny issue that they cannot see the blissful life they are living. Do I complain? Absolutely! But, I've also learned to frequently let the little things go. However, there are days when crumbs on the counter can make my head spin in a complete circle and flames shoot from my mouth. Anyway, I do believe it is indeed a sad thing to have such a great life with good health, yet not have the emotional perspective to enjoy the good fortune. I want to be that person who might be knocked down, but who keeps doing her best to get back up. Yes, yes, yes...I've been known to throw myself a huge pity-party on rare occasions and I do NOT send out invitations, it is a party of self-indulgence. But, I usually emerge with a needed mental adjustment that reminds me to think more positively. Making peace with your situation is a constantly changing requirement that needs to be addressed. Don't run from it, but try to not sit in misery for too long. Misery DOES love company, but be aware that you are dropping by and will not be staying for an extended visit. Tell Misery "Adios" as soon as possible. Search for joyful, meaningful things in your life and hold firmly to them. In short, try to live most days with an attitude of gratitude.

Today, among so many things, I am grateful for my grown children; my awesome, handsome husband; my beautiful home; my funny dogs; for my laptop; for being able to sleep six hours straight last night; for a great view of my backyard from my bedroom window; for great neighbors and for peace of mind in spite of the medical report! I am grateful for having found so many awesome people on the Addison's Village Forum so that I can clearly see that my deepest, darkest thoughts are not so deep and dark --- most others share the same thoughts and feelings. I am grateful for people who do not judge others when they need to whine. I am thankful for the encouraging people out there who have a gift of blessing others with their truthful, difficult journeys. I am thankful that I know how to be thankful.

My Husband & I having our normal fun times together.
Lake Livingston, Texas.

Tuesday, February 22, 2011

#35 - Tweaked Plans...

Having a full life in spite of Addison's is my constant goal. Every day there are challenges. And yes, I have some limitations due to this condition and due to complications from other conditions. Some days have greater challenges than others. But, I sure do savor the days when my body cooperates. Like a car with perfect alignment and a humming engine, I feel incredible and powerful. However, on bad days, I feel like a wheel is flat and my timing belt is slipping. Above all challenges it seems that the unpredictability of having Addison's/Adrenal Insufficiency makes each day a mystery-experience. Even with a tip-top medication schedule, etc., there are hitches. If you have other conditions, there are even more hitches than usual. So, I have learned...When I have a rough day, I try to focus on other things to distract me from my illness.

Today, I had to spend a couple of hours at a doctor's office having a painful test. So, I took the time to think about my youngest daughter, Stefie. Just thinking about her tiny frame and her big personality brings me joy. She is 20 years old and not 100 pounds, even soaking wet to the bone. Her first year of college was at Texas A&M-Galveston as she had been accepted into the Marine Biology degree plan/program. Her first year at college required that she stay in the dorm on the second floor, no elevator. The co-ed dorm was an education for the old momma here...every neighbor was a male-version of "dude." Her first school year, living in a dorm, mostly around guys, was enough to make this Addisonian carry PLENTY of meds when visiting. Thankfully, she was surrounded by the most awesome young men...all watching out for their little Stefie and her just-as-tiny room-mate who had been a best-friend since they were young girls. We had no idea that this tight-knit community would soon be put to the test.

Last year, my husband and I had just bought a new little car. An adorable, zippy Chevrolet Caliber. I took some extra time when selecting this economical vehicle so I could check out the airbags and side air curtains along with the other safety features. Glad I did. During Stefie's 1st semester away, she announced that she and three of her A&M-Galveston buddies would be driving to the main campus at College Station so they could go to a football game and basically hang out with other A&M friends for the weekend. Yes, we let the kids take our brand new car, after we'd rattled on and on about the rules. Stefie did not feel like driving, so her boyfriend, Dustin, was the driver. A good Mississippi boy who was studying Nuclear Engineering and who grew up on a farm and hunted for the food that sat in his freezer. On their way to College Station, I told myself to chill out. I reminded myself about my oldest daughter; she was in her last year of college at A&M-College Station and would get her Biology degree. Things were pretty awesome.

Through the weekend, I stayed in touch with the girls. The sisters enjoyed getting to see each other since they attended different campuses. The weekend had been long and full. Soon, it was time to head back toward the coastline. I knew they were driving toward Houston and I periodically checked my watch. I had a bad feeling and even texted that sentiment to my daughter. She texted back that they had got a late start, but were on their way. Within a short time after our last worried-mommy-communication, my cell phone began ringing and ringing. Upon answering it, I could immediately tell that Stefie's friend, Gordo, was panicked. Why was he calling me from Stefie's cell phone? He sounded scared, "Mrs C, I have something to tell you and it's not good, we've been in a bad car accident and the girls are hurt."

At that moment, it seemed like my life zoned in on one thing...getting to Stefie. I felt wildly out of control, but managed to remain clear headed enough to ask Gordo if he could get Stefie to talk on the phone. Then it hit me...Why didn't SHE make the call to her mother? Wary, I asked, "Gordo,where is Stefie? Is she okay? What about Corey?" Gordo sounded as if he were crying, "I don't know if they are ok; I don't know. It's a bad accident, the car flipped." I was stunned. Gordo began sobbing, "I am so sorry Mrs. C., I am so very sorry." I told Gordo to calm down and asked if he were ok. He said he thought he was, then I asked him to tell me what was going on and he gave the cell to a paramedic on site while explaining Stefie's mom was on the line. "Yes Mam," the paramedic began, "We are going to airbus your daughter and her friend to Ben Taub Trauma Unit in Houston's Medical Center. We will be leaving shortly." At that, we were disconnected.

I was in shock. I knew it had to be very bad because Ben Taub takes the worst of the worst. Needing a Lifeflight transport worsened the situation. My husband and I got on the road. We live about 30 minutes from Houston's Medical Center and it's a good thing that my husband was driving. I had little self control. Within minutes, the paramedics thoughtfully called us back on Stefie's cell to let us know there were no available airbuses, so had started for Memorial Hermann Hospital in the medical center with both girls in the same ambulance. Turns out, this day was full of tragedy for Houston with not enough EMS on ground or by air to meet the demand. So, David and I drove straight there as I spoke with my oldest daughter and with my sister who prayed with me and prayed with me. Actually, I can be a prayer warrior, but this time brought me completely to my knees  --- I'd never prayed in tongues, but my brain and mouth could not work together to form proper words, but I was still praying, but it was nonsensical to the normal person's ears, so I guess I was praying in tongues, to my Lord. All my emotion was flowing out of me in deep prayer, but too heavy for mere words to convey. Softly I prayed in tongues and never again will I question this "strange practice." Obviously, God listens. We can be out of our right mind and He still listens. He is awesome.

The kids were in their compact car and were hit at a major freeway intersection by a full-sized truck. Their car flipped several times over the median, knocking down signs, the hatchback of the car popped open and all the contents therein were strewn all over the road and those precious four kids in the car were each seat-belted and becoming quite smashed about. The two tiny girls sat in the backseat, trying to get rest on the way home. The two guys sat in front, but Stefie's boyfriend, Dustin was not driving. The other young man, Gordo, was driving. Now, Gordo is a great kid, but he is still a little too distracted by life, in general, to be in charge of a vehicle full of kids while driving a brand new car that he is unfamiliar with. Not a good recipe.

In a blur, we made it to the hospital and the girls had already arrived. For several hours, they would not let my friend Lynn and I see our babies. They would give not one solid update, other than, "they are being assessed." I've worked in this system plenty enough to learn that the hospital staff sometimes lies. I've seen it in action, twice. My mother's best-friend lost her daughter to a car accident - the hospital called to say that she had broken her leg and needed a ride home. Once  they arrived at the hospital to take their daughter home, they were informed that she was dead. Then, about ten years ago, my own best-friend got a call from Hermann (same hospital my daughter has been transported to) and the nurse said her daughter had a broken arm and to please come up to the hospital so she could get a ride home. Same thing. My dear friend was not in a dire rush to make it to the hospital because she was thinking the problem was a broken arm and perhaps an emotionally shaken up daughter - my friend was already thinking about how they were going to help her daughter carry her school books to high school in the coming weeks. Then, she arrived at Hermann, went to the nurse's desk and they proceeded to tell her that her 16 year old beautiful daughter was dead. Severe bodily injury. Nothing could have been done. So, I didn't trust anything the hospital would tell me. I needed to see my daughter with my own eyes.

After about 4-5 hours of waiting with my crazed lack of coherent thoughts, a nurse came out and said, "Only one of you may go in," and since my husband was not paying attention, I hauled to the nurse's side and said, "Let's go." They brought me to a gurney with Stefie laying on it and she looked like a little angel, an angel in great pain with tears flowing down the sides of her face, her mouth softly whispering, "I'm sorry about the new car, I'm so sorry." I put my hand over her shaking hand and saw that the rest of her body was severely shivering and she gritted her teeth in pain, and I said, "No more saying I'm sorry. God has protected you and I am grateful. That car is a bunch of metal - the car is worthless to us, but you are priceless."

We held hands as she suffered with pains and tears kept rolling down the sides of her face. We talked a moment in hushed tones mixed with tears and I could immediately tell something was really wrong. She kept squeezing her eyes shut every few seconds and her body would go rigid. Yes, I knew, with a mother's intuition, that there was a serious issue with her back. And she had been repeating some of the same questions to me and I sweetly answered them every time, thinking she was in shock. Since a couple of gun shot victims were being wheeled next to us at the time - one of the gunshot victims sitting up on his gurney with blood pouring from his chest and he was screaming and being combative, so we were doing our best to get information about my Stefie in the middle of chaos. Finally, a young nurse said Stefie had already had a CT Scan of her spine and head; she did have a fracture in her lower spine and a head injury. The head injury left a large bruise on her brain that would take at the minimum of 4 months to heal and during that time she would have short-term, repeated memory loss and bouts of nausea. I was so grateful to God because all of those issues can have healing, even if the memory could never be recovered.

My daughter's little friend, Corey, lay nearby on another gurney and she'd had it rough. Later, we would see the inside of our totaled car and the blood splatter on the seats and walls from Corey's internal injuries causing her to vomit blood as Stefie lay hanging sideways and upside down in her seatbelt with a broken back. The scene of the accident was grim. A nice young man stopped to help these girls; he prayed with my daughter there at the scene as she waited to be taken away by paramedics. Over the days the followed the accident she just kept referring to her "angel" at the accident scene, but her memory failed her beyond that. Due to her head injury, she remembers nothing leading up to the accident and nothing about the accident except for three things: 1) the blood as Corey vomited, and 2) ants biting her as her body was pulled from the wreckage to the center of the grassy knoll, and 3) An "angel" holding her hand and praying with her. This angel was across the street, stopping at a convenience store as he was making his way to a family wedding. So, he had his camera on him, literally. He missed the wedding and the opportunity to take awesome, beautiful shots of the bride and groom, instead, he took pictures of the accident. He emailed them to me. At first, I was scared to open the file and to see the photos. But, personally, seeing the car at the crash site gave me a shock, but helped with closure.

My daughter is tough. She's a chip off this old block. After six weeks of lying straight on her back, she made the brave decision with her room-mate, that they would both return to school. A&M had been so kind by arranging take-home exams, online tests, etc., so they could still continue with their classes. The school offered to move the girls dorm room down to the 1st floor, but they both vigorously rebelled. They wanted to return to school and have everything be as "normal" as possible. No changes. Stefie would have to climb two flights of stairs with a lumbar fracture. But, she was determined and she did it while wincing and sucking in air, but she did it. Over the following weeks, her good friends learned to listen to the same story or questions over and over and over, without complaint. The school had four kids involved in this serious accident, yet the student body and staff pulled together to do their best to help each child continue forward, with success. It meant the world to me.

Stefie finished her first year at Texas A&M-Galveston beautifully - all classes finished, with a solid GPA. She'll always be an Aggie, but this accident changed her young life. She was 19 years old when the accident happened and throughout that school year, she had also been volunteering with the Big Sisters Club of Houston - every week she was meeting with a disadvantaged little girl at the local Elementary School. Stefie saw her hardships; she wanted to do more, so she decided to become a Child Life Specialist. In fact, Texas Children's Hospital in Houston has the largest Child Life Specialist department in the nation. They are a leader in this area.

Stefie had gotten plenty of "thinking" time while looking at the ceiling for months and she thought about her car accident injuries having an impact on her life and she thought out her mother's illness and the impact that it had on the entire family. She wished that she would've had a Child Life Specialist help her through the worst, during her childhood. So, she did her research and bravely changed her major. Now, she again lives full-time upstairs, basically has her own "apartment" up on the 2nd story of our house and she is quite content to live at home while she pushes herself to excel in college. A go-getter, she is also a Montessori Teacher and loves her job. She is wonderful with children. I am so proud of my daughter and all the hurdles she has surpassed. So many kids would've quit. She didn't. So many kids would've slowed down and lost focus completely. She didn't. She kept going and then tweaked her plan to make it better fit her life. It took courage and I admire her strength.

Our household has seen its share of struggles...I just hope to not break out into a fit of praying in tongues any time soon again because I sure know that it would hold significance.

Today, my daughter's spark and her gusto for life and for family and for reaching hard-earned goals brings me such comfort and it encourages me. Even when I have a rough day, I think about how much worse it could be and I remember the night we got to bring Stefie home from the hospital - she sat in the front seat of the Dodge truck with her daddy, propped up so her back could be supported as best as possible for the ride home. I sat in the back with tears rolling down my cheeks while singing praise songs to Jesus the entire way home. No one said anything as I sung because we each understood very well how different this scenario could have been...the Lord was letting us bring our baby home. We would nurture her until she was well...we were going home, with her, Praise God. Mercy was upon us.

Sea Aggie Tail-Gaters in College Station at Kyle Field

Thursday, February 17, 2011

#34 - My Best Advocate

It's weird, after having Addison's for nearly ten years, I still had such high hopes that a miraculous reversal would one day take place. It seems that most people who are battling a medical condition have hopes, either deep down or close to the surface, that their condition will somehow disappear. For my situation, I have other medical conditions that I will try writing about very soon, but everything is extremely complicated by the Addison's.

But, this month I went for an updated MRI of the abdominal area. Oddly, I felt greatly surprised to see in black and white the print on the radiology report stating that my adrenals were completely shrunk from atrophy. My little adrenal glands are completely shriveled. My beautiful grapes are now raisins. Seeing those words about complete atrophy made me truly confront that there is not any chance that my adrenals will suddenly start functioning again, like an old factory that is brought back to roaring life. The factory has shriveled into nothingness.

Actually, I've had conditions much more serious than my Addison's disease, but the Addison's is like a blanket of glass wrong move and you're in trouble. I've battled other medical issues and adrenal insufficiency is always, always, always a concerning issue.

Even though I did not get the miracle of adrenals suddenly regenerating and getting back into action, I've encountered numerous miracles in other areas that I would not have had a chance to see if I'd not had Addison's.  My first major surgery after being diagnosed with Addison's was a risky cardio-thoracic surgery to decompress the subclavian artery. The diagnosing vascular surgeon came into my hospital room to give me the news of their finding and to discuss surgery. Of course, I needed immediate surgery as I was in danger of either an aneurysm or a pulmonary embolism because this artery was severely compressed. At my neck line, anyone could see the puddle of blood backing up. I was often gasping for air because of the loss of blood flow to my upper body. It was not a pretty sight.

The surgeon explained a tiny bit of the surgery I needed...I would need to have my first ribs cut out, the anterior and middle scalene muscles removed from my neck, scar tissue scraped off the artery and nerve went on and on. High surgical risks were involved for a "normal" individual with this cardio-thoracic surgery. This vascular surgeon came into my hospital room to deliver the bad news to my husband and I, "You will have a difficult time finding someone to perform this surgery because of your Addison's, most surgeons would not want to touch you with a ten-foot pole. This surgery creates more litigious doors than open heart surgery, so your situation with adrenal insufficiency definitely creates additional risk." This vascular surgeon was calm, kind, honest and terrified of my disease causing a smudge on his surgical record. I was discharged and in mourning over being forced to continue suffering with my dangerous vascular condition because the surgeon was too terrified of Addison's to do anything about it.

Thankfully, soon after, I did find a brave, intelligent and talented vascular surgeon in Houston's Medical Center. Before long, I was lying in the Heart and Vascular Institute section of the world-renowned Hermann hospital with my body sliced and diced, then sealed back up with tubes running out of it everywhere, but the invisible strangle-hold that had been griping my neck for so long had been significantly alleviated.

The entire process had been an emotional roller coaster. Immediately before surgery, our pastor showed up to be with my husband and I in the surgical prep room. They let him in because he was our pastor. A cardio-vascular anesthesiologist joined us. I was concerned, as most patients are with a major surgery that involves a rotating saw removing bone, so I asked the CV-Anesthesiologist, "Will I feel anything? Will I truly be knocked out?" The CV Anesthesiologist answered, "Yes, that's not the problem. You will be unconscious and unaware with no pain during surgery, but my main goal with your condition will be to keep you alive through surgery; it is a serious situation." My pastor's eyes widened; he took charge and hastily asked to be alone with my husband and I, then he held our hands and began a powerful prayer. A deep sense of peace came over us as the surgeons and surgical team gathered just outside the door. We all shared a grave sense of serious intent.

God did watch over me. I woke up from the surgery with an eyelid that would not open due to nerve damage during surgery; my diaphragm was paralyzed and this caused my left lung to collapse and even though I had drain tubes in my body, I still had a liter of blood leak into my chest wall. Recovery was certainly not a walk in the park. But, I survived the surgery.

More surgeries would follow, but the point is...I survived a very risky surgery WITH Addison's. Even so, the fact remains that it is more risky for an Addison's patient to undergo surgery than it is for the next person. I did endure more difficulties than mentioned here in the blog because of my surgery and recovery, and Addison's always created an additional battle. After the surgery, while in the hospital, there was a time when the ball was dropped and I didn't receive the proper stress dose which was still supposed to be at high doses and injected into my IV line. I won't lie, I had a full Addisonian Crisis IN THE HOSPITAL, charted as an Addison's patient and it still happened. If you are barely able to talk because of the severity of your surgery and surgical complications, it is not easy for the staff to distinguish the difference between you being a post-op cardiac patient or something weird, like an Addisonian going into crisis. My situation grew dire until the Chief of Endocrinology rushed into the room with his team and administered the proper post-op stress dose to coincide with the level of surgical trauma endured by my body. Yes, I discovered that recovery would be a long, long road.

Little did I know at the time of this surgery, in 2005, that I would be lying on different surgical tables throughout the coming years because of additional serious conditions needing surgical attention. Every time, Addison's added a dangerous dimension on top of an already intense situation.

I'm not a doctor, but I've sure been on the receiving end of all-things-medical for too many years; life has been my teacher. Therefore, I have personal opinions on these matters that come from a deep well of experience. A very deep well that I wished to have avoided, but here I am.

If you are ever put into the hospital for any surgery or illness, be sure to ask immediately for an Endo-consult so that they can do their part to help manage your care of Addison's / Adrenal Insufficiency while an in-patient. It is not advisable to accept an ordinary doctor's insistence that he is sufficient. If you do not insist on Endocrinology being a part of the team, then you might find yourself in a bad spot. Too many doctors do not FULLY understand this disease because they are too busy trying to understand their own specialty. Sometimes, the doctor brushes up on the overall definition of this condition, but it truly takes a specialist to get on the right track. Sometimes, it is a disappointment to discover the specialist is clueless, but it is your life we're talking about. Have your family/friend advocates on watchdog duty as well. My husband was my pitbull.

Still, even after all I've been through, it was rough to see the radiology report this month that verified my adrenals as being kaput. I had really hoped against all odds that those little glands would have perked back up and gotten back in the game. Since the hope of sudden adrenal gland "recovery" is no longer possible, I am thankful for medications that help step into the adrenal's shoes. Even though my adrenal glands have abandoned me, I am thankful to be pro-active and my own best advocate.

My Best Advocate

Tuesday, February 15, 2011

#33 - Good Days vs. Bad Days

This weekend, I had an incredible Saturday at my sister's house. The family gathered for a day of video gaming --- our bodies acted as the control since it was one of those new dancing games where you have to follow the dancer on the screen. We all enjoyed delicious Texas BBQ and a lot of laughs as we non-professional, out-of-shape "dancers" took our turn busting a move.

I took my turns and did my best, which was pretty pathetic, but I didn't care. It was a load of fun. My body is not always cooperative - no surprise since I am full of spare parts, but that didn't stop me from trying. I knew I'd probably pay dearly, but to dance with my 4-year old niece and to see my dad at about 65 years of age dancing better than everyone else was memorable fun.

However, my penalty began once we got home. I live just a few miles from my sister and once I got home I began itching terribly. The itching had begun earlier in the day, but I thought it was from my morning shower with a light irritating leg shave - the price of hairless-legged beauty - ha ha. I kept scratching and soon began itching all over my back and abdomen. With a bit of a shock, I discovered that I was having an allergic reaction. I'd worn capri knit pants to my sister's and didn't realize that I was still that allergic to cats - it had been about twenty years since I'd had a reaction. My sister had her cat put away, but the exposed part of my legs had been laying against areas the cat enjoys and BAM, I was steadily on my way to a full-fledged allergy attack. Of course, I increased my Hydrocortisone and my husband ran to the store to get a new bottle of Benedryl. Meanwhile, my itchy-dance had picked up pace.

Into the night I developed whelps all over my body, but the Benedryl thankfully kicked in and I fell into a fitful sleep. Waking around 5:00am Sunday morning, I did not have muscle aches, but I was wholly drained. I took my morning dose of HC and sat in the living room watching "Church," waiting for my meds to kick in. I could barely hold my head up. Leaning back in the recliner, I knew my body was struggling and figured it was because the allergy attack had zapped me. Throughout the day, I kept steadily taking more HC so I could at least walk to the bathroom and back without passing out. No matter how hard I tried to combat the overwhelming invisible weights pressing down upon me, I could not escape. My blood pressure kept plummeting. I struggled and took an extra safety precaution by setting out my injectable Solu-Cortef...just in case.

Later in the day, I realized that I probably needed Florinef since I had lost a lot of fluids the day before. My husband was looking all over for my prescription and I could not think clearly to give him direction assistance. My blood pressure had sunk so low that I was not able to even think straight. Finally, late in the day, when I was nearly ready to leave for the emergency room, I remembered where I had put the bottle. I cannot express how thankful I felt to have the medicine in my system. Within an hour, my head felt as if it were "ballooning" as my pressure steadily stabilized. Soon, I was able to walk around the house, do a load of laundry and disinfect my master bathroom. The difference was night and day.

Strangely, this was my first time to have a huge dip in my blood pressure and the inability to stabilize my condition through additional Hydrocortisone. Usually, that is enough. This time, it wasn't. I discussed this with my favorite physician yesterday and he commented that I probably am at a stage where I just need a bit more Florinef than before. I have been one of those patients who could NOT take the "recommended" dose of Florinef because it had once caused my internal pressures to increase so tremendously that even the blood vessels in my eyes burst and looked horrifying. For years, my body with Addison's required very little Florinef, except when dealing with the heat or when conducting activities that might cause dehydration faster than normal.

Regardless, I never cease to be amazed by the power of these little pills. Next time, before I begin dancing around and having too much fun, I'll take extra Florinef. Perhaps I'll retain fluid better. I had eaten a diet with extra sodium that day, but unlike before, this time it wasn't enough.

After this episode, I began thinking with sadness about all of the people who are currently suffering with this condition undiagnosed. On the other hand, treatment is still relatively new in history, so I contemplated the situation of people who had suffered with a nameless disease - having no choice other than to lay there as they became weaker and weaker, until the body gave out. Realizing the trial and error treatment of all of these patients before us...I feel so fortunate to have medicine that works like a helium tank --- filling my body with an uplifting boost, pulling me up, up and up!

Learning new lessons with Addison's never ends. Just when you think you have it figured out on a decent level, then you find that you are side-swiped with a new scenario that brings a new lesson. Needless to say, I have new prescriptions for Florinef and will have a back-up bottle ready as a precaution. My husband also now knows where the Florinef is kept and the importance of having it on hand just as we have Hydrocortisone ready during a crisis.

The great news is that having Addison's doesn't have to only mean having bad days, it can mean having a terribly bad day, but the following day can be incredible. I guess the unpredictability of the disease can be most disturbing, but I am always grateful for a good day. Today is a really good day, and I am looking forward to enjoying plenty more.

Tuesday, February 8, 2011

#32 - Support Systems...

Support systems in all areas of life have tremendous value. I believe that sports demonstrate the powerful effect of a support system. Whether you are the football or volleyball player sweating and pushing yourself to the max or even if you are the armchair cheerleader or living room coach, you are a part of the system and supporting the cause. However, not all support systems are created for fun and recreation, others are out of a dire need to find others with whom you can relate or who can provide guidance through the shared cause.

I am finding, so often, that those who are confronted with Addison's/adrenal insufficiency are also dealing with other conditions that complicate their health. Our body is such a delicate, intricate, marvelous piece of work. One area goes out of whack and other areas soon start wobbling. That is why it is imperative to immediately tackle the first area of malfunction as quickly as possible...before the other parts start to follow suit. Heading off a negative chain reaction is the best option. But, for those of us who continue to be misdiagnosed or who get no answers at all, the postponement can be life-threatening indeed.

If you feel that your doctor is not listening and your instinct is telling you that something more is going on within your body, don't be afraid to ask about other tests. You can also bring in a concise hand-written list of symptoms with stated concerns and DEMAND that it be put into your medical records, as part of your records. Make sure to date and sign the list. Then, it is recorded, officially, and the discussions about your state of health and condition at the appointment, from your point of view, is completely included. You have the right to add your own notes about your symptoms. So often, a patient will be describing the symptoms of their condition and if someone looks at the chart and puts it together, they might get on the right track.

Before my Addison's diagnosis, I had written one of these notes in bullet-form. I added strange symptoms, such as my overwhelming and abnormal craving for V8 juice and the sensations of being very unwell as the V8 juice ran out of my system (my body's demand for salt to help balance plummeting blood pressure). I felt as though I were walking against resistance, as if I were moving through mud. My body remained very exhausted, yet I was not "sleepy." These symptoms and more were part of my list. Now, when doctors go back and see the list, they are practically appalled because all of the symptoms were a clear indication of Addison's disease. Too many were searching ONLY for the all-mighty pigmentation change, but I had it minimally, without much notice. Turns out, it is not a great marker, even for typical Primary Addison's patients.

I encourage you to keep noting all of your symptoms, regardless of your condition. Don't be made to feel selfish or ridiculous for doing the most basic task in life...taking care of your health. All other tasks depend on that one task. Your health IS the foundation of your existence. If you have a child with symptoms, it is a difficult job, but also note the foods that they absolutely crave and the things they shun, their activity schedule, agitation level and sleep habits may be good to note as well. Being a Medical Detective is not the easiest involuntary position to hold, but sometimes we do not have a choice.

If you are looking for support - not just with Addison's/adrenal insufficiency, but with any overwhelming medical condition, then reach out to others who have been down similar roads. Those who have suffered with major illnesses, regardless of the illness, can still forge a common bond. Having physical limitations and psychological effects from major illness can be understood by many. At this point in my life, in a crowd, I can spot the person who is seriously ill just by the look in their eyes. I've also been in that position of having someone nearly charge my direction because they were too in-tuned to my subtle outward signs of serious illness that I thought were well hidden. You learn to read people's eyes once you have repeatedly seen your own during times of great illness.

However, finding someone to understand your particular condition with its unique symptoms and challenges might be more difficult; it is harder to deal with a condition when there is no one with similarities to be found. That can be a lonely place. Sadly, the search for a support system can be hindered by the rarity of a disease. In those cases, the best route might be to take the second best option and connect with people who understand serious health issues and the suffering it entails. Connecting with someone who doesn't have compassion or is unable to relate to health battles might not be beneficial. Connections with people who can help open your mind to certain topics related to health issues and with those who acknowledge the dark side of suffering, but also provide hope and encouragement for a better day might provide a realistic touchstone. Others might be healthy, but connected to you on a higher level, such as a family member and they are a most valuable branch to your personal support system because they hurt when you hurt.

For those of you who aren't from Texas, who are not fond of football or who prefer a competing team/university - we are still connected because we ALL can understand the depth of the following: When writing this entry and with last Sunday's Super Bowl still on my mind, I began to think more deeply about our support systems. One place where a strong support system is clearly evident is at Kyle Field during an Aggie game, but it goes further than the eye can see. Texas A&M has a long-standing tradition of honoring its "TWELFTH MAN" which began in 1922 during a fierce football game. The Aggies were battle-worn during the game, so the coach called a basketball player and squad man (and former football player) down from the press box where he had been helping reporters identify players on the field. This young man was in his regular clothes, as a fan and supporter of his football team. The coach called young E. King Gill to get prepared to play ball, so he enthusiastically ran down the stands, through the crowd, he suited up and stood ready throughout the rest of the game on the sidelines for a chance to do his part on the field. In the end, A&M finally won, 22-14 while this young man who had been pulled from the crowd, remained the last man standing on the sidelines for the Aggies. His eagerness to be of service, his diligent readiness by standing the entire time will forever be memorable. Gill was quoted as saying, "I wish that I could say that I went in and ran for the winning touchdown, but I did not. I simply stood by in case my team needed me." The Aggie football team honored Gill's willingness to serve and from then on, Gill became known as the "Twelfth Man." Eventually, Gill and the 12th Man title began to represent the ideals of the entire student body.

Today, when you see the Aggies play, you'll fully understand the passion during an Aggie game. You do not have to be an Aggie fan to be respectful of and to be personally touched by this spirit of support. Each of us has a 12th Man residing within us. In fact, this ideal reaches well beyond football. Today, as the Aggies play a game at Kyle Field, you can see the that one side of the stadium is dedicated ONLY for Texas A&M students who STAND during the ENTIRE game. These students are devoted to standing; united as the "12th Man" and this dedication is so fierce that you will not find seats in the student section. No student would lightly betray the spirit of the 12th Man. Every time I see the student section at Texas A&M during a game, whether in person or by television, I am brought to tears as they take ready action, standing as one, just like Gill did in 1922.

This true story speaks to me on a profound level because you might be suffering, but even having one person by your side standing ready to help can be a powerful presence in your life. Who is your 12th Man? Maybe you're blessed enough to have an entire section rooting for you through the good and bad days, but it only takes one strong, determined person on the sidelines to make a significant difference. Maybe your 12th Man is an online support group, a neighbor or an old friend. Make sure you take time to honor the ones in your life who embrace the spirit of the 12th Man. Do your part to be that 12th Man when another person is in need, even if it means you are not called to action, but merely need to show support by standing ready and wanting to do good. I hope this 12th Man historical recollection will help you to see a support system in a different way and to fully realize the powerful potential of one person.

My girls at an Aggie game!