This past week, I've been battling with a terrible respiratory illness. Just about yearly I battle with pneumonia. I get my pneumonia shot every three years on target, but any cold that I catch seems to settle into my chest and develop into a lump of concrete that won't move. Of course, being steroid-dependent due to Addison's disease does not help the immune system fight off common health troubles.
To make matters more of a struggle, I've had a couple of cardio-thoracic surgeries on two separate occasions and each one found me with a surgical complication of a collapsed lung. Therefore, my lungs are not as strong as they once were in my 30's, they will never fully inflate as they once did and they are scarred enough for the scars to appear on MRI. So, I have a challenge when it comes to catching a cold.
One thing that is difficult is to educate CLOSE members of the family about this disease so they can better understand how severely this disease impacts my life. However, I don't like discussing this disease, so that makes it a challenge, but most family members still cannot even spell Addison's Disease...a mental block remains because it's just easier that way. However, I am not eager to go another round with pneumonia for three months as each antibiotic fails to do the job, so if I come to your house for a holiday gathering and you have an obvious cold...I'm sorry for your misery, but that one week of misery for you could mean months of serious illness and possible death for me, so don't get your feelings caught in a jangle when I'm outta there!
Another hardship is to be around family members who are die-hard smokers. The smoke residue is an irritant for most healthy people and fresh smoke whirling about your head while being breathed into a healthy pair of lungs can be difficult to process. For my situation, it can cause great problems. For lung irritants, I do the same as I must do with people with colds...avoid the smoke.
Most people are intelligent and courteous smokers, but even my own dad will be standing directly next to me, very aware of my health realities and personally viewed memories of seeing me on oxygen with the pulmonologist at the foot of my bed telling me that my lung is collapsed and I must go through the exercises with the pulmonary therapist no matter how badly it hurts. Yet, he still smokes, as if I've been given another new set of lungs, like magic. I guess he thinks I'm immune to his smoke or that since he's my father the smoke should bother me less.
Struggling with pulmonary complications is not always pretty. And let me tell you, having a collapsed lung is painful. In my situation, I can describe how if felt as the lung collapsed into itself, sticking together, kind of like an old balloon that has been deflated and the inside of the balloon begins to adhere to itself, as if it is melting onto itself when deflated...that's how it felt my lung was responding when it was collapsed, when each lung collapsed at separate times, one year apart from each other. When you must blow into the various pulmonary therapy contraptions, it forces air back into the lung and pushes the sticky sides apart and that's when you nearly crawl to the ceiling in agony. You have a side of you that screams, "JUST LET IT STAY STUCK TOGETHER BECAUSE WHEN IT SEPARATES, IT IS HORRIBLE FEELING!" And after you exhale, the lung then collapses back onto itself...it's a vicious painful cycle. Often, in a quiet room, I could even hear, with the normal ear tuned-in, the distressing crackling sounds and I could clearly feel the rickety separation of the lung as it would pull back apart with each breath I took. The deeper the breath, the more ripping and tearing sensations I could feel.
Eventually, the lung began to fully separate into a full "inflated bag" feeling again, but I could never take in a deep relieving breath of air as I had once been able to do. My idea of a breath of deep air pulled into my lungs would be forever changed. And sneezing? Oh my gosh...after a collapsed lung, it would take about 9 months for my lung to expand properly again, but the auto-response of the body sneezing would truly feel as if a burst of TOO much air had just been pumped into my lung and nearly blown it apart. A simple sneeze began to be something that I dreaded with horrible anticipation. These days, I can sneeze and not feel like dying, but it took a long time to get to this point.
Getting out of breath for me is an easy task. I do feel as if I am a strong woman...especially for all that my body has been forced to endure, I always fight back with a vengeance to regain the strength that I can. This means doing more than I'm probably supposed to do, faster than I'm supposed to do it, and for longer than is recommended. However, after my first major surgery, I discovered that forcing myself to get going would mean less pain in the long run. The problem is...I often have a difficult time sitting down. Sitting means that you actually have more time and luxury to spend extra mental power on your aches and pains...for me...downtime is not necessarily good time...staying busy with pittering around usually helps me deal with my own level of chronic pain.
Yes, there are times when my body tells me, "WOMAN, you will not move a muscle! Chill out and relax." During those times, I keep my mind busy with alternative solutions since the physical option is out of the question...usually a good book, journaling, blogging and such things are at my relaxed fingertips. My bedside often resembles a person who needs everything within an arm's reach, so I don't have to ask anyone for anything...I have multiple drinks, usually a juice, my tea, a water and perhaps a 1/4th a cup of soda if I'm trying to chase my Hydrocortisone with carbonated soda to kill the after-taste; and all of my books of different varieties are ready to be picked up...a couple of fiction books, a couple of non-fiction, my Spanish lessons, a magazine and a big hard-cover journal full of blank pages to fill.
But, I try to stay away from the bed as much as I can. Pittering around the house is my thing. I clean things that probably no one realizes actually NEEDS cleaning. Often, I wonder how long it would take in my absence for someone to realize such things need attention. Things like...wiping down the cabinet fronts, cleaning all sides of every appliance, dusting the lampshades, digging the dust and dirt out of every little crevice in the house, cleaning the six-paneled recesses and hard hit areas of every interior door in the house, dusting each book on the shelves, and continually wiping down the inside of every cupboard while washing the dishes, pots and pans at the bottom of the pile that are forgotten about...I like to tackle the out of the way things so that I know my corners aren't ignored. For me, the hidden areas deserve to the cleaned just as much as the ones that are in plain view. However, if you must step over that stack of papers to get to my side of the bed, don't complain because the INSIDE of my desk drawers are highly organized!
I'm very blessed because Deputy Dave has me pegged. He knows me so well that he could probably tell you which of the half dozen books next to my bed I'll choose to read on a given day. The papers don't bother him because he knows I'm also taking care of things behind-the-scenes in the house for each one of us. I'm the family secretary. If there is a document about anything in our lives, I've filed or scanned it.
So, this week it's been difficult to battle with this respiratory nuisance. For those of you with Addison's disease or an Adrenal Insufficiency, you must know that respiratory illnesses are often the main culprit behind a serious "sudden" decline into an Addisonian Crisis. In the years that I've been doing personal research into this disease, I've often found major complications and sometimes even death to follow an Addison's patient either being sick with a respiratory illness or a stomach virus of some sort...it's not the major, obvious troubles, such as surgery, that are the getcha part of the equation with this disease, it's often respiratory or stomach troubles that spiral into dark complications.
Therefore, if you find yourself battling a seemingly harmless little cold or stomach bug, do not forget to increase your medications so that your body can have the extra synthetic fight-back-stuff that it would normally produce if you weren't afflicted with this disease. If you don't consciously stay on top of it, while you can, you might find yourself at the mercy of others who might not even understand Addison's disease on a level that is necessary for you to survive...heck...sometimes we who have this disease can't even understand our own symptoms. So, if you get a cold, double those meds as a routine precaution...don't wait for extra symptoms to pop up and don't try to distinguish between feeling bad because of the cold or stomach bug or trying to wonder whether or not that excessive dragging sensation is actually the disease itself. For too long, I tried to decipher the difference between whether it was the virus or the disease causing me to feel so lousy, and the delays with self-diagnosis contemplation caused me harm. Don't harm yourself by taking too long to drag yourself to the pill bottle for that extra dose that your body needs for life-sustaining supplements.
And during the holidays, take care of yourself. Limit your exposure to germs. Your immediate family should be understanding, but if they aren't, then you will have to take pro-active steps to protect yourself from any people who are known to show up for those family gatherings, in spite of their kids running 101 degree fever and left unsupervised to randomly touch all the food that is set out on the table with snotty fingers. Oh, you know who I'm talking about? You have this person in your family as well? I guess we ALL have those people in our family. Being pro-active might mean constant hand-washing, avoiding kissy face moments, not eating the buffet style food that's been contaminated and keeping a bottle of anti-bacterial solution in your pocket for regular usage...don't touch your mouth, eyes or nose.
As for my own respiratory distress, I can trace mine back to a couple of weeks ago when I began to feel lousy, after working in my dad's house for a few days. He smokes inside the house. I'd love to be able to go over there and do more, but I've re-learned a hard lesson...things haven't changed, I cannot be around such an environment. Time has not changed the condition of my lungs, they are touchy. This means that I must be smarter, even if that hurts the heart.
Well, if I see you coming through the front door and your have tissues in each hand, swollen eyes and a runny nose, please forgive me for taking off for the hills or waving from a distance.
Just for kicks...I have this mean side of me that would love to say to the hacking person who shows up for the holiday gathering and risks exposing everyone at the party with their obvious misery, "Hey there...let me give you a big hug...oops, I guess I should've told you that only people with an active cold can catch Addison's disease...let me know how that works out for you after you see an endocrinologist sometime this next month!"
Wouldn't that be a strange "reverse" situation that might finally get someone's attention as they are all too eager to spread their germs while feeling too comfortable that they won't catch anything since they're already sick? Yes, I remember that family member laughing as they came through the front door sick, "Well, at least I can't catch it, I've already got it." Funny. Very funny.
Hmmmmm. Wouldn't it be interesting if this person talking about their horrible stomach bug -- that just ended yesterday -- is caught in their own game. As they describe how they've vomited so much this past week and lost ten pounds or as they are sneezing into your air space, wouldn't it be fascinating to watch their expression if they were to be told with seriousness that they had no immunity to catching Addison's disease due to their sick state? Oh, how awful...their stomach bug or cold has created an "open door" potential danger for themselves, and the rarity of this disease means that most people don't hear about it, but since I have Addison's disease and I'm that rare part of the equation and you are sitting here so close to me with your own compromised immunity...oops...BAD COMBINATION for you! I bet those people would be at home, nursing themselves, scared out of their britches that they may get a whiff of something they don't dare want to deal with. And I'd be sure to make a surprise visit to every gathering they were attending, rushing over to get in their space with my Addison's Cough. Hack, hack, hack.
Yes, this warped sense of humor plagues me. I think it's how many of us get by with dealing with our challenges.
Yep, that's my mean side. Actually, I would not wish Addison's disease upon my worst enemy...maybe. But, I can't help but perhaps tell a little white fib to the next person who grabs me for a big snotty hug. I can picture myself saying, "Oh, you are soooo sick, you know, they think that's what led to my Addison's disease...having a regular cold and then being exposed to the Addison's-disease-bug-virus-germs-bacteria...the Addison's germs that I carry around get an open door to those who have a cold, geez, you look a little pale...Do you need ANOTHER hug? Awwww, get over here and let me kiss those pale cheeks til they're rosy again!"
Ok, I'm downright mean and making myself laugh out loud with an evil laugh. Can you hear it? HaHaHaHa! Bring on the holidays, I'm ready for the snifflers and for a little payback. I think I'll sign up for a new cause...to offer heightened awareness for all those who show up to a gathering with their contagious germs simply to get a free dinner and run out the door. On behalf of all those who are taking an extra five steps backward because they do NOT want to be THAT close to their stomach flu green cousin or too chummy with the sick parents of the crusty booger faced nephew who should be at home resting...yes, I might play the Addison's-Is-Catching game.
It's time to play with somebody's mental state and get them started with being obsessed with googling about the non-existent Addison's disease "germs." To add to the fun, even though this family member who has been coughing in your face has LONG known you have "Addison's disease" for ten years and that you have a compromised immune system, you can get a few precious seconds of demented delight as they become terrified that they've been exposed to YOUR disease that's actually NOT communicable. But, they don't have to know that little detail. As they sit panicked, thinking that they are indeed exposed and as they suddenly need to know how to spell the disease properly so they can sit in the corner with their IPhone and google it, you can suddenly become too busy to sound out the name of the disease properly...even having extra fun while mumbling "Abidoson," "Adsmonian" and other fun words that will have them tripping all over the place in their google fun. Then, for kicks, how about a huge fake sneeze in their direction?
Suddenly, the holidays just became much more exciting to me.
Everyone...take care of yourselves! Laugh a little and carry that anti-bacterial solution, even if you don't normally use it. Tis the Season!
Wednesday, October 26, 2011
Friday, October 21, 2011
#96 - Keep Moving Forward
Dealing with serious illness can make it difficult to move forward. There are times you might suffer through challenges, have setbacks or face insurmountable hardships; you might wonder how you can move forward.
So many people suffer from illnesses and disease that can make them feel as if they have no future or a very narrow future. When you are bed-ridden or confronting physical weakness from a medical condition or a physical challenge from body parts that don't operate as they should, it might not look as if a future is in view to grasp. You might envision a future that you can't imagine grasping.
However, as long as you have the ability to daydream...you have a future. All of us have daydreams and many of them end up to be our reality. Don't quit dreaming.
There were times when I was so sick that I was coding, but having the ability to pray, to meditate, to daydream about being out of that slick, lumpy hospital bed...that was still a future for me to look forward to. Of course, everything else in life was on hold, but being able to daydream did make being trapped in a hospital bed more bearable. And I did have my turn of being blessed as my daydreams of being in my own room at home became a reality. Such small daydreams can be beautiful, precious blessings for a person who is desperately longing for simplistic things in life, such as to be free of the hospital intercom system blaring every few minutes throughout the night, disturbing your minimally existing peace. Somehow, being confined to bed at home doesn't look so bad, not after you have a new perspective of comparison with being confined to a bed, in a hospital, with a screaming room-mate. An attitude adjustment and a fresh perspective can truly help you to move forward.
I learned to greet my mattress with a smile instead of despondency; I was moving forward.
As my "recovery" began, I found myself slowly beginning to think about the next holiday, the next birthday celebration for a loved one around the corner, an approaching milestone with my children...each time I found myself feeling relief at making the latest event and feeling mentally stronger to confront any challenges that might arise down the road with my health.
I learned to cut back on how long I attended a function. and I learned which ones to push myself over the edge to be a part of and which ones to be content to hear about second-hand; I was learning to move forward with new boundaries.
Being able to make little plans, big plans, tentative plans, any plans is a huge step forward for a person who has been battling with serious health issues.
The only way an otherwise healthy person could probably understand this concept is to think about your mode of transportation...you have a beautiful birthday party to attend for your best-friend and you walk out to your vehicle to find all four of your brand new tires to suddenly be flat. You don't have a second vehicle available. This party was a good distance away and there is no one nearby that will be going your way for you to attend. You are very upset because you really wanted to be there...it was extremely important to you. But, you realize that you can't do anything without those tires being addressed.
Suddenly, you are unable to be independent and to do as you would like...hop in the car and drive away. What if this happened to you daily? Yes, the pocketbook would be severely impacted and this is exactly what happens to a person or family that faces catastrophic illness in the family. The financial drain is unthinkable. The frustration is unimaginable. The helplessness is unbelievable. The reality can be disheartening.
To be cursed with constant flat tires on a daily or weekly basis is kind of what it is like when you have a serious illness that constantly interrupts your life...it is not convenient, that is for sure. And, a person's body may hit a health predicament that creates unpredictable patterns in their personal world. It's hard to understand how you might feel decent one moment, then the next moment, your tire has gone flat and you are unable to move.
In my situation, I can't even count all of the flat tires I've had. There was a time when I had counted the number of IVs that I'd had inserted into my veins at the hospital, and I finally quit counting at 136. For some reason, that number was the point I decided to quit counting; I lost count after approximately 136 intravenous lines had been put into my body for one reason or another, in places I didn't even know an IV could be inserted. Maybe that was a way for me to keep moving forward, to quit counting.
The key to moving forward with an unpredictable illness is to be flexible and to not beat yourself up when you can't do as you have planned. If you become too wrapped up in missing out, then you really will miss out on life. I learned to tell myself to quit being devastated by the interruptions in my life because of health issues; if I became despondent over missing an important event, then I was allowing even more time in my life to be eaten away by troubles. Instead, I learned to savor the more simple things in life...reading a good book, writing in my journal, sending a hand-written card to a family member or friend to let them know I am thinking about them...I became the family photographer and spent a good deal of my down time with photo editing and uploading to Facebook for sharing.
Do what you can with what you've got.
Finding ways to be content can be a way to combat the difficult times. Learning to cherish the things that seem to persecute you...the silence of being alone so often when confined, the boredom that surely comes with being less mobile...a great way to relieve these problems that come with being very ill is to experiment. If you have never drawn before, SO WHAT? Start drawing. Often, you are battling unvoiced thoughts during serious illness and picking up a pen and a journal of blank pages can be cathartic.
Sometimes, when I felt as if I couldn't write a word, I'd start brainstorming on the page...picking a main word such as "Sickness" and I would doodle all over the page with key words relating to the main word, such as weak, frustrated, trembling, humiliated, dependency and so on. And it helped get out my deepest fears, my hurts and the internal suffering that certainly occurs with any person who feels trapped in their malfunctioning body.
Maybe you can only scribble angry lines, but at least you are getting it out of your system and that means you are moving forward.
For a long time, I could not make long-term plans with such careless abandon as I'd once enjoyed. I had teetered on the brink of life and death so often that I began to feel as if planning anything would jinx my future. It didn't even seem possible for a person to face death so often, but I learned that people do battle illness that are not just presenting a potential life-threatening situation, there are people who have, like myself, actually been embattled in the struggle for life, repeatedly. I had to decide whether or not I wanted to keep up the mental fight. If I had decided to give up, I'm sure that one of my episodes with oncoming cardio-pulmonary shock and fading vitals would have been easier to accept and I might have allowed it to fully engulf me.
I don't necessarily think that a person makes up their mind to survive. "I will survive" kinds of declarations does not guarantee survival. I've been on the very edge of death so often that I've frequently questioned the reason I survived so many touch and go emergencies. Many doctors have told me that they thought I was surely a goner, then I would surprise them, against all odds and make a come-back...however, I don't really think that we have as much control over things as we'd like to believe. Yes, a good, strong mindset of wanting to live definitely helps. But, when you've lived long enough, you begin to see some hard truths in life...there are people who did not fight to live, yet they lived on and on through horrific health storms while others who cherished life and had so much left undone, with a fighting spirit, are whisked away, completely against their will.
The variables in life are immense. Since a strong will to live seems to help us to survive or it at least makes us feel as if we are somehow more in control of being selected for surviving, then fight back. Make it known that you have unfinished business in this life and would like to stay. There's nothing wrong with that. Be happy with your life, but don't be complacent.
I always told the Lord, "If you must take me, then thy will be done, But Lord, you know the true intent of my heart and it is to stay here for as long as I can, as healthy as I can and to be as productive as I can."
Being blessed, I was ready to move forward with the Lord at my Heavenly address or here with my Earthly address. Regardless, I was determined to move forward. Honestly, the earthly address required more hard work on my part, but as my health became more stabilized, I began to look forward to more family functions. I began to incorporate more spontaneous plans into my life...I realized that I should do whatever I wanted at the moment I felt strong enough to do it. I learned to NOT WAIT. Moving forward meant learning how to GRAB THE MOMENT.
I learned to turn around and head home if I didn't feel well. I learned to push myself during the good moments so that I could get as much squeezed out of them as possible, then I learned to accept my down times and not beat myself up as much.
Am I successful every day? Perhaps my idea of success is to simply recognize my body's limitations for the moment and to be aware and compassionate so that I can be the best I can be, as often as possible. Some days I'm a brute to myself, but I don't allow myself to throw a lengthy pity party. And if I do throw myself a pity party, I really prefer going alone.
Being scared is different, admitting you are scared is hard, but that's a tough part of life when you live with roller-coaster health, admitting it when you're scared helps you to keep moving forward instead of it paralyzing you. Never knowing when the next flat tire or blown engine will hit can create tension in your life, but keep going and keep moving forward until the next flat tire appears and the next and the next. Just keep moving forward. Stay strong, and hopefully, in the end, it will have made a difference because you just took another giant leap forward into a bright, sunny spot you've been aching to reach.
Keep moving.
So many people suffer from illnesses and disease that can make them feel as if they have no future or a very narrow future. When you are bed-ridden or confronting physical weakness from a medical condition or a physical challenge from body parts that don't operate as they should, it might not look as if a future is in view to grasp. You might envision a future that you can't imagine grasping.
However, as long as you have the ability to daydream...you have a future. All of us have daydreams and many of them end up to be our reality. Don't quit dreaming.
There were times when I was so sick that I was coding, but having the ability to pray, to meditate, to daydream about being out of that slick, lumpy hospital bed...that was still a future for me to look forward to. Of course, everything else in life was on hold, but being able to daydream did make being trapped in a hospital bed more bearable. And I did have my turn of being blessed as my daydreams of being in my own room at home became a reality. Such small daydreams can be beautiful, precious blessings for a person who is desperately longing for simplistic things in life, such as to be free of the hospital intercom system blaring every few minutes throughout the night, disturbing your minimally existing peace. Somehow, being confined to bed at home doesn't look so bad, not after you have a new perspective of comparison with being confined to a bed, in a hospital, with a screaming room-mate. An attitude adjustment and a fresh perspective can truly help you to move forward.
I learned to greet my mattress with a smile instead of despondency; I was moving forward.
As my "recovery" began, I found myself slowly beginning to think about the next holiday, the next birthday celebration for a loved one around the corner, an approaching milestone with my children...each time I found myself feeling relief at making the latest event and feeling mentally stronger to confront any challenges that might arise down the road with my health.
I learned to cut back on how long I attended a function. and I learned which ones to push myself over the edge to be a part of and which ones to be content to hear about second-hand; I was learning to move forward with new boundaries.
Being able to make little plans, big plans, tentative plans, any plans is a huge step forward for a person who has been battling with serious health issues.
The only way an otherwise healthy person could probably understand this concept is to think about your mode of transportation...you have a beautiful birthday party to attend for your best-friend and you walk out to your vehicle to find all four of your brand new tires to suddenly be flat. You don't have a second vehicle available. This party was a good distance away and there is no one nearby that will be going your way for you to attend. You are very upset because you really wanted to be there...it was extremely important to you. But, you realize that you can't do anything without those tires being addressed.
Suddenly, you are unable to be independent and to do as you would like...hop in the car and drive away. What if this happened to you daily? Yes, the pocketbook would be severely impacted and this is exactly what happens to a person or family that faces catastrophic illness in the family. The financial drain is unthinkable. The frustration is unimaginable. The helplessness is unbelievable. The reality can be disheartening.
To be cursed with constant flat tires on a daily or weekly basis is kind of what it is like when you have a serious illness that constantly interrupts your life...it is not convenient, that is for sure. And, a person's body may hit a health predicament that creates unpredictable patterns in their personal world. It's hard to understand how you might feel decent one moment, then the next moment, your tire has gone flat and you are unable to move.
In my situation, I can't even count all of the flat tires I've had. There was a time when I had counted the number of IVs that I'd had inserted into my veins at the hospital, and I finally quit counting at 136. For some reason, that number was the point I decided to quit counting; I lost count after approximately 136 intravenous lines had been put into my body for one reason or another, in places I didn't even know an IV could be inserted. Maybe that was a way for me to keep moving forward, to quit counting.
The key to moving forward with an unpredictable illness is to be flexible and to not beat yourself up when you can't do as you have planned. If you become too wrapped up in missing out, then you really will miss out on life. I learned to tell myself to quit being devastated by the interruptions in my life because of health issues; if I became despondent over missing an important event, then I was allowing even more time in my life to be eaten away by troubles. Instead, I learned to savor the more simple things in life...reading a good book, writing in my journal, sending a hand-written card to a family member or friend to let them know I am thinking about them...I became the family photographer and spent a good deal of my down time with photo editing and uploading to Facebook for sharing.
Do what you can with what you've got.
Finding ways to be content can be a way to combat the difficult times. Learning to cherish the things that seem to persecute you...the silence of being alone so often when confined, the boredom that surely comes with being less mobile...a great way to relieve these problems that come with being very ill is to experiment. If you have never drawn before, SO WHAT? Start drawing. Often, you are battling unvoiced thoughts during serious illness and picking up a pen and a journal of blank pages can be cathartic.
Sometimes, when I felt as if I couldn't write a word, I'd start brainstorming on the page...picking a main word such as "Sickness" and I would doodle all over the page with key words relating to the main word, such as weak, frustrated, trembling, humiliated, dependency and so on. And it helped get out my deepest fears, my hurts and the internal suffering that certainly occurs with any person who feels trapped in their malfunctioning body.
Maybe you can only scribble angry lines, but at least you are getting it out of your system and that means you are moving forward.
For a long time, I could not make long-term plans with such careless abandon as I'd once enjoyed. I had teetered on the brink of life and death so often that I began to feel as if planning anything would jinx my future. It didn't even seem possible for a person to face death so often, but I learned that people do battle illness that are not just presenting a potential life-threatening situation, there are people who have, like myself, actually been embattled in the struggle for life, repeatedly. I had to decide whether or not I wanted to keep up the mental fight. If I had decided to give up, I'm sure that one of my episodes with oncoming cardio-pulmonary shock and fading vitals would have been easier to accept and I might have allowed it to fully engulf me.
I don't necessarily think that a person makes up their mind to survive. "I will survive" kinds of declarations does not guarantee survival. I've been on the very edge of death so often that I've frequently questioned the reason I survived so many touch and go emergencies. Many doctors have told me that they thought I was surely a goner, then I would surprise them, against all odds and make a come-back...however, I don't really think that we have as much control over things as we'd like to believe. Yes, a good, strong mindset of wanting to live definitely helps. But, when you've lived long enough, you begin to see some hard truths in life...there are people who did not fight to live, yet they lived on and on through horrific health storms while others who cherished life and had so much left undone, with a fighting spirit, are whisked away, completely against their will.
The variables in life are immense. Since a strong will to live seems to help us to survive or it at least makes us feel as if we are somehow more in control of being selected for surviving, then fight back. Make it known that you have unfinished business in this life and would like to stay. There's nothing wrong with that. Be happy with your life, but don't be complacent.
I always told the Lord, "If you must take me, then thy will be done, But Lord, you know the true intent of my heart and it is to stay here for as long as I can, as healthy as I can and to be as productive as I can."
Being blessed, I was ready to move forward with the Lord at my Heavenly address or here with my Earthly address. Regardless, I was determined to move forward. Honestly, the earthly address required more hard work on my part, but as my health became more stabilized, I began to look forward to more family functions. I began to incorporate more spontaneous plans into my life...I realized that I should do whatever I wanted at the moment I felt strong enough to do it. I learned to NOT WAIT. Moving forward meant learning how to GRAB THE MOMENT.
I learned to turn around and head home if I didn't feel well. I learned to push myself during the good moments so that I could get as much squeezed out of them as possible, then I learned to accept my down times and not beat myself up as much.
Am I successful every day? Perhaps my idea of success is to simply recognize my body's limitations for the moment and to be aware and compassionate so that I can be the best I can be, as often as possible. Some days I'm a brute to myself, but I don't allow myself to throw a lengthy pity party. And if I do throw myself a pity party, I really prefer going alone.
Being scared is different, admitting you are scared is hard, but that's a tough part of life when you live with roller-coaster health, admitting it when you're scared helps you to keep moving forward instead of it paralyzing you. Never knowing when the next flat tire or blown engine will hit can create tension in your life, but keep going and keep moving forward until the next flat tire appears and the next and the next. Just keep moving forward. Stay strong, and hopefully, in the end, it will have made a difference because you just took another giant leap forward into a bright, sunny spot you've been aching to reach.
Keep moving.
Sunday, October 2, 2011
#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.
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.
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| My beautiful sister and my niece. Two awesome reasons to be thankful every day of my life. |
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