#97 - Stay Away from Bugs and Learn to be a Pest!

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!