As for me, when I fell critically ill with Addison's disease...I discovered that many "lay" people will instantly gravitate toward pointing a finger with laughable "educated" guesses as to what could have caused you to "come down" with that condition. I've discovered that it is often human nature to display this lame attitude that spouts "I can't get that disease because I didn't do x, y, and x!" It's as if they believe an invisible protective barrier can be put between them and such a medical condition because they have lived in a way that has guaranteed their inability to be inflicted. Well folks, there are no guarantees out there. Many conditions have links to suggested causes, but some disease are completely without rhyme or reason for who gets it and for what age it can sneak up on you. With Addison's disease, for my situation, it sort of went like this...get in line and be forced to draw one of 100,000 tickets stuffed in a barrel, it seems nearly impossible to end up with the unlucky Addison's disease ticket, but you reach in, grab the ticket and turn it over to find it's the Addison's disease ticket. And there's no turning back.
Many people battling various health issues along with people who suffer sudden terrible injuries can find themselves holding one of these unlucky draws. You wish to be able to do it over again, but life can put into our hands a circumstance that we didn't want to find ourselves holding. However, if you are finding yourself staring down a bad situation, you must confront it with knowledge, courage and with as much endurance as you can muster.
As for Addison's disease and adrenal disorders, so many afflicted do become very ill. Their lives are often altered, permanently. Others feel fine one day and the next are flat on their back. I guess my point is that very few people diagnosed with this disease are living in a body that feels the same as it did in their pre-Addison's days. For those who have not been impacted much or for those who were "diagnosed" prior to their body going completely kaput on them, well, those people are very fortunate, they lucked out on drawing that particular ticket. However, I can tell you, unequivocally, that my body going into a Code Blue due to being undiagnosed for so long was not a pleasant experience and many others with adrenal disorders have also found themselves very ill, struggling day by day. My Code Blue is what grabbed the white coats in the hospital by the collar and forced them to look in places for a solution that had not yet been searched. My treatment for Addison's did not come until after complete medical testing had taken place to confirm or deny Addison's disease. However, the suspected diagnosis was so strongly supported by symptoms and available test results that the doctor had the meds ready and waiting to be administered as soon as all testing had been completed. They closely watched me, ready to act, but they didn't want to burden me with an Addison's disease label, without having testing to back-up the diagnosis. This is a hard line to walk...dangerous...but I was in the hospital and hooked up to every machine imaginable. The suspicion was confirmed and I appreciate this strong stance so I wouldn't be taking drugs that my body really didn't need for the rest of my life. I can tell you that an Addison's Crisis is not the same as having a bad day with low energy levels...left untreated, it is INCAPACITATING. Period.
As soon as the testing was complete, the miraculous treatment began...before the results were in, they believed they had found a solution and it was confirmed in an upfront manner as soon as those drugs were put into my IV and I began to again be able to hold my head upright by myself, to sit up in the hospital bed and to even begin walking again! FINALLY, I could withstand moving into an upright position without passing out. They sent a physical therapist to my hopsital room and they placed a "walking/stabilizing" belt around my waist so they could hold onto the loop of the belt at my back as I walked. I was 33 years old, getting help to walk again, but having to use a walker. The nurses were clapping. I felt amazing. Little did I know that a long, hard road would be in front of me. Those first few triumphant steps after receiving treatment for Addison's disease would not be a "cure all" equivalent. Hard lessons would remain in my path to become stabilized. My condition had become "brittle" and that is not a good thing; it is more difficult to become leveled out if your condition is brittle.
But, for the record, I wanted to make it known that I had been in great shape prior to becoming terribly ill with Addison's disease. I never smoked, was NOT a drinker, never did drugs...my life had been squeaky clean. I ate great, worked out...even had a membership at the YMCA with my entire family, I played racquetball, biked, hiked, camped and led a very, very, very active lifestyle. I worked and lived for my moments outdoors. My children grew up outdoors because both my husband and I cherished every outdoor moment. As most other families were inside, trying to avoid the heat and playing video games month after month, we were taking weekend trips all over Texas...truly LIVING life and experiencing nature first-hand.
Then, my body shut down, literally. It shut down. I can look back and see how the symptoms were creeping up on me, such as the sluggish walking-through-mud kind of sensation I'd feel during a simple walk, but I still feel as if the big Addisonian crash hit me rather fast.
Since I'd lived such a healthy, active lifestyle, the doctors could not figure out what had happened to cause my body to be impacted by this disease.
There was a tracing back to my teenage-hood of moments recorded with extremely low blood pressure, high heart rate and low sodium, but the racing heart moments always passed and happened sporadically. Once my body went into shut-down mode at 33 years of age, I found myself trapped, like a ragdoll.
For the record, my doctor told me that he was certain I would have not survived this critical state of illness UNLESS I had been in such good physical condition when the worst happened. My strong physical state and life-time of active living definitely helped me to survive the worst of times, precious time as world-renowned doctors were given a bit more time to scratch their heads and to finally find an answer.
Therefore, I'm grateful for my random good choices that positively impacted my situation with this rare disease. Making the personal choice to not drink had probably saved me in a huge way...alcohol depresses and relaxes our muscles, my lack of cortisol would have created a lethal mix with alcohol during those times. If I had drank during those months of my life disintegrating, I would have contributed to a faster downfall and probably would have lessened my chance of getting that life-saving diagnosis in the nick of time.
Regardless, I have been through major testing by all kinds of doctors in Houston's Medical Center in an attempt to find an answer. I've found it highly interesting that one of the suggested links was that my blood-work had tested positive for the Epstein Barr virus and it is believed that my body's response might have gone haywire in the attempt to battle the virus. Lately, I've been reading of other Addison buddies who experienced smilar suggestions. If that had been the case, then my adrenal glands had been mistakenly assaulted by my own system trying to heal itself, kind of like the adrenals were unfortunate victims of friendly fire.
This is auto-immune chaos at work. Perhaps that is what happened. I don't know. A solid answer was never found to this perplexing question for my particular situation with Addison's disease. There are other suggested reasons for me developing Addison's disease, but no one really knows an answer.
Yes, it would be nice to know what went wrong so that we could all learn from it, especially since this is not a common condition. For my own children, I wish I knew the reason this rare disease picked my body as a permanent residence. However, it is important, to me, that I keep moving forward and continually try to live the best way possible so that I can enjoy the few good days per week that I am given.
|Going down the rapids with my friend, Stephanie.|
For those of us who watch someone battling cancer of watching people struggle with heart disease...we cannot be so eager to point fingers of judgment for their condition. I always tell people to be careful because those fingers might be pointing your direction, next week. You never know.
After all, each of us is doing SOMETHING, day by day, that could possibly produce tragic results. Heck, a good friend of the family is running every major marathon within a 400 mile radius that she can enter, while knowing her joints are in serious jeopardy from the constant impact...it's not necessarily a good thing FOR her, but she's kind of addicted. She feels as if the act of running is good for everyone, but that's become a moot point, even for her own body. I stood by her the other day as she pointed to people with a big gut while she made ignorant comments about their diet causing problems and I just shook my head as I wondered if she even realized that her own acts were about to put her down a very "hard" road of premature joint replacements. For those kinds of people, you can't really reason with them. As my husband always said, "You can't reason with the unreasonable."
I guess each of us should do what we feel we need to do or want to do, within reason, without excuses for "bad" choices, embracing as many healthy boundaries as we can, but do it while embracing compassion for others who are trying to make it in this world. Taking responsibility for our lives is extremely serious, but there are, for ALL OF US, consequences down the road awaiting us, in one way or another. Some of us rush to meet it, on purpose, while others are ducking and dodging, doing their best to avoid life's punches. As for me, I'm ducking and dodging; it's not as easy, but I keep moving! Regardless, I CAN guarantee that 100% of us will eventually meet the end of this life with final consequences...just because we have been a living being. Living and dying go hand in hand. I'd prefer to put off the dying part of the equation for as long as possible, but I can't say that I'm a "perfectionist" at being a human being. I've not met anyone else who has been either, except for the guy who advertised for drinking home-made veggie juices, but he couldn't avoid the final consequences of life either. My point is...if you brag about your strong legs today, they might be gone tomorrow from a car accident; if you feel smug about your strong physique today, you might find yourself with a funky virus tomorrow that causes muscle wasting; today does not guarantee tomorrow and our choices do not always guarantee a life free from complications, in every area of life, including our health.
Willing minds, eager for deeper understanding in life will get it faster than the next...a pointing finger is always attached to another imperfect human body. Becoming more compassionate and alert to the suffering of others is always a good stance for us to take, especially if we hope to receive the same from others. Our choices do have an impact on us directly, heck, I have already touched my fair share of public door handles this week. How about you? Are you living recklessly!?