Tuesday, July 27, 2010

ENTRY # 10 - Addison's Who??

Short Description of Vitality: is an exuberant gusto that can't be extinguished, and if your vitality starts to fade, there is something seriously wrong.

In 2001, I was savoring life. This would be my last summer without ever even hearing about "Addison's Disease." This summer would be a time of great change.

My first warning signs of having Addison's set in fully was an overwhelming sense of my body not keeping up with my mind. I had always been strong and able to go nonstop. Like a machine, I was churning and going and being productive. Then, at only 33 years of age, I was suddenly finding my body rebelling against me. It started slowly...I would find my muscles feeling less strong...walking was not as effortless, lifting a heavy object was not as easy, and my endurance was fading.

More stark was my inability to regain my lost strength by resting or by even trying to increase my workout regiment. Nothing was working to help me feel more vitality. I wondered if this was normal for my age. It had started out so slowly, I thought it was simply a sign of my body not being in its twenties any more. I had no idea. Finding a reasonable explanation is a part of human nature. Most often, times of feeling unwell will eventually pass. Surely, this would be the same kind of thing. I'd tell myself, "Give it time and you'll be back to normal." Days, weeks and months passed by as I watched my "normal" slip further and further away. Never did I imagine that my body was being subjected to a rare disease that would soon have me flat on my back fighting for life...

As my Addison's set in, I began to crave V8 juice. I had always liked it, but not really enough to keep on hand. I started drinking one every morning. It seemed to help "pump me up." Then, within a week or so, that was not sufficient, so I added another one around lunch. Soon, I kept a V8 next to me at all times. My mom would bring me a case of V8 and she questioned out loud one day, "I wonder if you are deficient in some kind of mineral, this doesn't seem to be an ordinary craving."

No, I don't think that suddenly surviving on V8's was "normal" but I obeyed my cravings. I even informed the multitudes of doctors I had been rushing to see about this new never-ending food choice. Later, I would find out that these "I had a V8" moments probably were key in helping me survive in a prolonged state of Addisonian Crisis. The sodium alone helped increase my sinking blood pressure. Going from doctor to doctor in an effort to try to discover my ailment - I'd been told so far, "You have chronic low blood pressure and a sodium deficiency." No one asked, "Why?"

I didn't particularly like salty food, but I did like a salty V8. Later, I discovered that the sodium I gained in each drink helped my plummeting blood pressure rise high enough to barely sustain my body to a sitting position. Soon, the hurried walk to the kitchen in an effort to get my V8 had become a dangerous journey. Something was wrong. Really, really wrong. When did walking to the kitchen nearly put me into an unconscious state? But, during each visit to the E.R. or to a doctor's office, the physician would look at me and see my youth with my deep sense of humor and embarrassment and they'd determine that I simply needed rest. Didn't they understand me? Didn't they listen? I didn't feel the need to be dramatic. I plainly would explain my symptoms and assure them that I had been "resting" for weeks on end. It wasn't working. Sometimes, my blood pressure and my electrolytes were so off-ish that they'd hook me up to an IV for a few hours. The fluids, sodium, potassium, etc. would perk me back up and I'd sign my discharge papers to be sent home. And, within 24-hours, I would start the severe process of rapid deterioration once again.

Weeks passed. My mom took me from doctor to doctor in the medical center in Houston, Texas. One of the world's best, and there were no answers. There were definite signs, but not one doctor put it all together. I remember getting so sick and people coming to visit. They'd walk into my bedroom and their face would be horror stricken. Friends were pitching in. My friend Kelly would cook us meals and come dust my house. She had been my life-long friend; she knew in her heart that I was dying. What could she do but help ease my suffering in watching the house become more and more neglected. I had kept a relatively "perfect" house. It wasn't so "perfect" any more. I could only lay there and watch it fall apart. My husband was stretched too thin. Having to care for a severely ill wife is sort of time-consuming. Other friends would drive my kids to and from school. Some would want to call to provide me with company, but they didn't quite understand that I could barely gain enough energy to talk. My fuel tanks were depleted. I was sputtering. I turned on the answering machine and tried to ignore the life-sapping world. This was my worst nightmare.

People who knew me did clearly see that the worst was taking place. I had family and friends sit by my side and pray for me; some wise loved ones would lay hands on me, then cup my face in their hands and tell me that I was in God's hands now. Meanwhile, my husband was physically functioning on the highest level ever, but he was nearly out of his mind with worry. He was doing everything; the laundry, the dishes, the cooking and taking care of me with tender love. His wife was dying. He knew it. My daughters...I can't even hardly talk about that part. I tried so desperately to shield them from the truth, but there was no possible way to protect them from the ugly truth. Their mother was not the same. They developed huge anxiety, especially my youngest daughter, as they had to leave for school. Both feared that I wouldn't be there when they got home, and they'd never see me again. No doctor could give an answer. I had become so ill that David was now having to stand behind me so I could simply go to the bathroom. He'd put his strong arms under my arms and wrap his arms around me, locking his hands together. He'd slowly walk with me while helping to push my legs, one by one, in front of me so I could move forward. We had become so synchronized that a system was developed. We adapted. He was determined. Regardless, it's a lowly experience when you can't even sit on a toilet without physical assistance. However, there is also a level of illness that gets so desperate that you don't care. Staying conscious becomes your focus. That is your daily plan. Never did David imagine that the marriage vows of "you two will become one" to be like this. He'd stand like this with me beneath the shower head so I could try to be refreshed. I was addicted to showering. It had always helped before all of this started. Never did he complain. Of course, we always cherished the closeness. But, this wasn't how we wanted it to be. Now, I couldn't even stand on my own, but he stood strong for both of us.

Sometimes, in the middle of the night, I'd wake to find my husband leaning closely over my face with a terrified expression on his face. Later, hospital monitors would help me to "alarmingly" discover that my breathing was slowing and lapsing into nothingness for long gaps of time as my pulse faded away. Often, he'd reach down and be holding my wrist tightly as he tried to find a pulse. Sometimes, I'd wake up gasping for air and it would take forever for me to be able to suck in a gulp of air. My lungs were collapsing. Then, there were the 911 calls and paramedics ushering me out of the house as they tried to stabilize my vitals. It was a huge mystery and this went on and on and on. For three months. For three very long agonizing months of seconds that were non-negotiable on my part. Diligently, I'd tried to find an answer. I wanted to live. It had become as bad as bad could get. I could not hold my arms up to even feed myself. I certainly could not drive and I could not bargain with my body any longer. It had separated from my mind...I could not control it any longer.


  1. Your journey downhill sounds like so many others. Slowly approaching the end while doctors stand by scratching their heads? Why is this? My story is rare amongst a rare disease. I had an early diagnosis. My family doc was partners with an endo, when he had no more answers for my declining condition he consulted his partner and they tested my cortisol/ACTH, amongst a battery of other screens. It was another six months of testing before I started treatment, but I had an idea and some insight to modify my lifestyle. I too could not stand the notion of Steroids for Life. But I continued to decline and had to accept there was no alternative. After all, the alternative is death!

    My wife and I tried to shield the kids from my condition for a long time. While I haven't been upfront about it with them, they have asked their mom about it. And they, like the rest of us, get to a frustration breaking point. Even with the treatment, I've been diminished more than feeling "normal". I think I'm only now beginning to accept this for my quality of life. For 2 years of treatment, I've taken things day by day.

    It's really hard to imagine myself 20 - 30 years down the road. It's a little scary when I do. As the major bread winner, it's hard to hear of so many Addisonian's who cannot work full-time. I count my blessings that I got an early diagnosis, as I have never had a crisis and spared damaging my body in other ways. I just hope I can maintain my state of health and continue to provide for my family.

    My best to you, Lana. And thanks again for sharing your experiences.

  2. I, too, cannot understand why the medical community is so slow in identifying and diagnosing Addison's. It is ridiculous. I do have a comment on your post, Michael, when you said that the alternative is death. There is another alternative, and that is the limbo between normal life and death: severe brain injury caused by an Addisonian Crisis. My daughter went to sleep one night, totally normal, but with a respiratory illness, and when we woke up the next day, she was blue, postured, and seizing. The previous year, we had done the multiple trips to doctors, ERs, etc....with no one recognizing that the dark tan and dark skin folds were classic symptoms of Addison's.

    I think the solution for people who are coming up behind us is Addison's Awareness. Years ago, no one knew about Alzheimers, autism, or any other of a myriad of orphan diseases. I think we need to add Addison's to that list of diseases that have gone from obscurity to everyday language. People need to know the common symptoms of Addison's. Doctor's need to know the symptoms. We need to tell them!

  3. Jean...your words are wise. I am with you. Addison's Awareness is desperately needed. I am so sorry that you and your family have had to go through such tragedy to get any answers at all. I was finally told, when I was diagnosed and near death, that this was often diagnosed upon autopsy. I guess that rings true for those of us who become so far gone in their health status that it becomes a miracle to simply make it another day.

    For your family, the consequences of a delayed diagnosis is beyond comprehensible. Severe brain injury caused by an Addisonian Crisis is a very real danger. The brain, during a crisis, just can't function without proper blood pressure, sodium, etc., and NO ONE around the person suffering a crisis is guaranteed to even know there is a problem.

    There have been times when I've been so far gone...had my eyes closed and unable to open them because I had slipped into a bad state of an Addisonian Crisis and could not even talk or communicate to tell anyone. Since I've had these episodes, I have learned that those times were the start of an Addison's induced coma and cardio-vascular failure. Why have I been able to get multiple chances to come out of these terrible situations? I only know that I've been given multiple miracles...for some reason. Not without lingering effects, I'm sure you know. I even survived an official Code Blue during a hospitaliation, but every time, I know that the worst could be the end result. For your family, please know that there is not always a solution for this situation...even increased meds are not always a sure bet. Having doctors who are knowledgeable would be awesome. But, I think the "text-book" conclusions are easier and faster. That leaves the Addison's patient in the dust.

    No one can know your is full-fledged and immeasureable. I firmly believe you are doing the difficult thing, but the right thing by reaching out and sharing your story. It is an extreme-wake-up-call that needs to keep sounding loud and clear so more people can be Addison's Aware. Thank you Jean. Please stay in touch.

  4. MichaelO, when I began reading your blog, it caused an ache inside of me because I feel for you. My kids were (I think) in 5th and 8th grade when I became so sick with Addison's (before diagnosis and treatment).

    I remember so clearly how we tried to shield the kids. We try, but there's just not enough shielding to prevent your kids from knowing something is "off." Sometimes, a simple answer is the best and satisfies them. As they get older, they will learn more and more about Addison's. They will be stronger for it. I promise. I have 2 kids who did go through hell over some of this stuff, but they are beyond their years in wisdom and compassion.

    This is an entire other story, but when I got sick, I was the bread-winner. My Addison's Crisis had gone on for too long before they discovered what was wrong. It affected my internal organs, etc. (all is ok now) but it took a year to recover from being so sick for so many months. We had to change everything - sell our home, and on and on...I wasn't even able to work any more, much less earn the six-figured income. However, fortunately for me, my husband does have a great job in a stable profession - but the Harris County Sheriff's Dept does not pay as much as our established litigation support business had been paying me. But, my deteriorating health did impact our lives in a huge way. If I had received an early diagnosis, things would not have become so dire.

    The good news is, after all of our struggles, today, my family is better off than ever. Addison's forced me to take stock of my life. I was forced to make changes I might not have ever made. It gave me the push to pursue my art and to live more passionately, yet on more level ground. Life is all about feeling. For those who avoid hasn't even begun for them. Addison's will bring a lot of mixed feelings into your world. Explore them, don't hide from them. Since you are a musician, you're probably ahead of the curve in this area. Music requires emotion. But, most people will not be able to understand.........heck, you've already learned that many doctors don't understand this condition, how can friends and family really be in the loop when we can't sort through it all ourselves?

    I still work. I am the owner of a real estate brokerage in Texas. I am the Broker/Owner, so I have flexible hours...a good thing for me. Life can be tough with Addison's, but take your good days and make them stretch for as long as you can. Take your meds; get plenty of rest with a schedule; stay away from germy people---with love; and keep being real. Your music is as critical to your health as is your meds...give it your consistent attention. Your music is very good. In fact, your experiences probably will make you an even better musician. Just channel all that emotion into musical expression, without fear. It's already incredible. Lana.


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