#95 - Who Should You Thank?

I had to partially copy a comment I was making over at Mo's blog at http://www.daybydaywiththeaddisongirl.wordpress.com/ because she put me in the mode of thinking about how some people have a difficult time accepting your diagnosis of Addison's disease.

I guess that people with other diseases that were not understood in the past have also gone through these issues...people with asthma, multiple sclerosis, muscular dystrophy, heart conditions and other diseases that affect muscle usage and that make you weak and susceptible to life's stresses are not always understood by the next person who is inflicted with the worst condition of all...shallow-mindedness.

Perhaps at one time I was one of those people because at 33 years old I had the "perfect" life and the "perfect" body, never thinking that anything bad would happen to me. In fact, I was into weight lifting and bench pressed more than most men, just over 180 pounds of solid weights was my record at the time...recorded electronically at the local YMCA. I was strong, had abundant energy and could run in circles around everyone I met. My entire life I'd been that way, for the most part.

Well, I felt great until the day that I began to feel exhausted. I don't know how else to put it because it's frankly difficult to put my finger on the exact time I had begun to waste away. It was a sneaky gradual decline, then it seemed to accelerate rapidly in the last few three months of being very sick without life-saving medications that are necessary for a patient with Addison's disease to survive. My muscles had weakened into the consistency of jelly and they wouldn't cooperate the same way any more. Walking across a parking lot became something to do that I needed to give myself a pep talk to accomplish. What was happening to me?

No amount of rest could cure my exhaustion. This wasn't a kind of exhaustion that could be made better by sleeping. You can't sleep away most diseases, but with Addison's you hope to wake up the next day to find the OLD YOU back again. Each morning becomes devastating as you realize your condition is the same. Waking up as a new person is a dream many people with serious health issues would love to experience...if only life were that easy.

Little did I know that I'd developed a disease which would make it an extreme rarity for me to ever again feel that delicious sense of being "rested" after I'd woke up. Forget lifting weights, I could barely lift my arm any more. If I had not experienced this myself, I probably would find it hard to believe that this can happen to someone. But, Addison's disease has taught me a valuable lesson in wisdom...just because it hasn't happened to me doesn't mean it isn't happening to someone else.

I don't have to battle cancer cells to know that someone else has them eating at their body. We don't have to see everything to believe it is taking place.

I never imagined that my life could change so drastically by Addison's disease. Sadly, there are people out there who are incapable of accepting truths of this disease, unless it impacts them directly. Usually, those people are the ones who end up with worse things biting them in the butt, so I often feel compassion for them because they will not escape their ignorance indefinitely. Each of us usually has some issue to deal with. But, if a person needs glasses, I don't go up to them and tell them that I don't believe that they really NEED to wear those things...that if they'd just try harder they'd be able to see clearly or that their blurred vision is proof of their mental weakness, not a sign of an actual physical problem. That would only make me look ridiculous and this is how people look when they can't accept a family member being diagnosed with a rare disease such as Addison's disease.

Unlike some diseases, but better than others, Addison's is more rare and uniquely difficult to treat because of natural fluctuations in the body, so the treatment is not as simple as the concept of putting on a pair of glasses. This disease can be difficult to manage, even under the best of circumstances.

The people who choose to be ignorant to the suffering of others are suffering from their own condition that is worse than Addison's. I'd hate to go through life lacking compassion because that position puts a person at risk to lose the most after they find themselves in a flipped position of needing the compassion of others. Worse, it would be awful to go through life embracing such shallow selfish positions. I'd rather let people know that I am so sad they have such a challenging battle and that even if I can't understand how it feels, I will do my part to try to be understanding and supportive. After all, one day, the roles might be reversed and they might need your understanding and support.

In my situation, I have been totally blessed with my family. They understand this disease. My side of the family watched me wither away as Addison's nearly killed me --- I barely got a diagnosis in time, only after coding at the hospital. But, my husband, my mother, my children, my dad, my siblings, my grandmother, my aunt, my uncle, my husband's aunt by marriage, my friends...so much support that I cannot even remember because it was overwhelming. Everyone had known how strong I'd been and to see me deteriorate so quickly was frightening for many onlookers who loved me...it scared the whits out of them.

Of course, there are people in the family who don't have a clue as to what is going on in our family with being impacted by this disease and that is good...I don't want to clue them in. I'd rather them keep their distance because they are incapable of being compassionate to anyone but themselves. With those kind of people, it's best to put out the yard stick and keep them at a comfortable distance so you can focus on the loved ones who are there for you on a regular basis. I am ready to be there for these family member and friends as well. My gratefulness cannot be expressed. Loving actions and behaviors and emotions should go both ways...sacrifice should not only arrive with strings attached...it should be given freely, with love.

I am thankful to have had an abundance of all of these and to have a family that is incredible. They helped me to continue living when the doctors were without answers. They didn't give up, even in their exhaustion.

Lastly, I wish my mother were still here so that she could see how well I am doing these days. She died worried about me. She'd had a dream that I was going to be completely healed, and I did my best to believe her dream. Even if my healing requires daily medication, I consider it to be a blessing and a form of healing, so she was right. She died at 57 years of age from breast cancer in 2006, and I am alive because of her determination, her sacrifices and her faith that an answer would be found for my decline. She was incredible. If you are helping someone who is ill, even if it is to just be understanding and loving in your ability to listen and to offer compassion, to make them not feel like a burden or to do the near impossible and help them feel less guilty than they already do for becoming sick...I hope you know that you are priceless. Truly priceless.

My beautiful sister and my niece.
Two awesome reasons to be thankful every day of my life.