Why Not Me?

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When I got diagnosed with Sarcoidosis, I didn’t ask “Why me?” I said “Why not me?” While I was certainly frightened about what it all meant, I wasn’t bitter or angry. Every person has a cross to bear. Why should I be immune?

I needed to accept that this is now part of me, and instead of dwelling on the “could have beens” of not getting sick, I had to learn to live with the realities of it. I still do. But I knew from the start of it, that I could not stay stuck in self pity.

But I’m human so, I still fight with this stupid disease all the time. From time to time I get the upper hand, but eventually it wins. It wears me down. I overdo it several times a week. I still struggle with balance and some part of me hopes I always do so that I never give in to the symptoms. Because, while I need to accept this is part of me, I do not have to allow it to define me.

But what I knew almost immediately upon diagnosis was that even though I have this ten ton truck on my back, there is not one person on the planet that doesn’t have burdens; there is not one person on this planet that doesn’t struggle with something, often living with the odds stacked against them in ways I have never had to face. I know, despite this disease, that I am lucky. Some might say blessed. Whatever you want to call it, I know that this burden I’ve been given was given for a reason. And perhaps the reason is only as simple as it was my turn!

Yes, I am sick. And yes, my life has changed. As a result I grieve my losses like any one would, but I have gained things that I would otherwise lack. I am wiser now; I am more at peace; I accept things easier that I cannot change; I am much less judgmental. In a strange way, the world’s colors are brighter now. I know a secret. I know the value of life in a way that is far more profound. So many of the things that used to bother me, no longer do. I have learned that I can decide where to put my energy and time.

Am I happy that I got this disease? No, not at all. Do I think it is unfair?. Sure. But then, life isn’t fair and I’m not immune to the whims of it. No one is. I think it is understanding this and learning to accept this over time that is allowing me the benefits of this burden despite the pain it also brings.

So when something unpleasant happens to me, I don’t ask, “Why me?” I say, “Why not me?” There is freedom in this type of acceptance and with this freedom comes an ability to cope.

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Dumb Things People Say When Your Illness is “Invisible”

I have kept an actual list of all the dumb things people have said to me since being diagnosed with sarcoidosis. I find it quite amusing, sometimes sad, and occasionally frustrating.  These are comments from doctors, friends, neighbors, family members, strangers….just about everyone!

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Regarding Fatigue:

“Are you really that tired that you can’t even go the the movies tonight? I mean, all you have to do is sit there.”

“No one ever gets that tired.”

“How could you possibly like sitting so much?”  – (One of my personal favorites….so dumb!)

“I read about your disease online. It doesn’t sound that bad. And it didn’t say you would be so tired. Are you sure you aren’t depressed or something?”

“Sarcoidosis doesn’t cause fatigue” – (This one came from a doctor…not a doctor who is treating me, but a friend of mine…boy did I set him straight!!!!)

“Can’t you just try to sleep better at night?”

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Regarding Having Sarcoidosis:

“What’s that? I never heard of it….you’re weird.”

“Who gets a disease no one has ever heard of?”

“Sounds like one of those ‘House’ diseases.” –  (Referring to the TV show)

“I read about it. You’ll go into remission and be back to normal in no time”.

“I read about your disease online. It doesn’t sound like anything too serious”.

“Wow, weird…too bad you don’t have cancer. You’d get more support” – (Who wishes cancer on someone….really….I almost fell down laughing when a now former co-worker said that one.)

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Regarding Being Sick:

“You don’t look sick.” – (An oldie but goodie…I probably hear this one the most.)

“How can you possibly be so sick and look so good? I don’t get it…are you sure you’re really sick?”

“If you keep losing weight, you’ll be size zero. I’d kill to be size zero”.

“What’s up with that cough? Take some cold medicine or something.”

“Why do you get so cold? I don’t get it…it’s 75 degrees today.”

“I’ve never heard of using a chemo drug for anything but cancer. Are you sure your doctor knows what she is doing?”

“You are fine. Don’t play it up.”

“When are you going to go back to work? It looks like you should probably get back to work now…you look too good to be sick.”

“I never said you couldn’t work.” (This one from my doctor. She really pissed me off the day she said this. Very poor bedside manner.)

“If you’re so sick, why do you always have rosy checks?”

“Feel better”

I could go on and on but I won’t. You get the idea. I’ve learned a few things about people since getting Sarcoidosis. The first is that most people just don’t care. People are generally pretty self involved and these people tend to speak before thinking. Why should I waste any more energy on their ridiculous comments than they do on caring that I’m sick? And the second is that those who do care simply don’t always know what to say. They are well meaning, so there is no point in getting mad at them.

It is important for me to keep a good sense of humor about what people say or else my feelings would be hurt…a lot. But I have to admit that some of the things people say still amaze me! There is a lesson in this for all of us. Maybe some people just shouldn’t talk!

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The Shear Power of Will

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Our will is the strong determination we have to do something difficult and it is powerful. Living every day with Sarcoidosis, is difficult. Anyone living with a chronic illness develops a mastery for living this way that takes great nerve and a steely strength of character that they rarely give themselves credit for.

The shear power of will helps me not only to get up every day but to strive to live every day. To live as normally as possible. Sure my life has changed but that doesn’t mean I have to stop living altogether.

The power of the mind over the body is an amazing one. It doesn’t always work but without this trick in my bag…the trick of will, I would be lost.

The shear power of will forces me to push through things I must get done and allows me to enjoy things I would otherwise let go by.

Our time is short, even in the best of circumstances. I don’t care if I have a chronic disease that makes me gasp for air or cry out in pain with each step, I intend to continue living and if the power of shear will is one of the things that pulls me through …well then thank goodness for it.

Will power is defined as the power to carry out ones wishes, decisions or plans. It is a firmness of purpose, a strength of resolve to press on even in the hardest of times.

I need a strong will to survive this disease. It’s a skill I have honed since my diagnosis.

I am not talking about self will. I am not talking about an overdeveloped sense of self righteousness.

I am talking about a strength of character. I am talking about an endurance, a force, an exercise of the mind to propel the body forward.

This disease has not only the ability to zap my physical strength but to steal my mental reserve. This is why honing the skill of will is so important.

It takes a mental toughness to sustain life with chronic illness and we should not ever underestimate the power of our mind to push us forward even in the worst of times.

Things To Do When You’re Feeling Blue

Look at fun family photos

Talk to a friend

Drink a huge glass of chocolate milk

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Hug a loved one

Watch a happy movie

Snuggle with your pet (if you have one)

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Play with your children (if you have any)

Get out of bed and take a shower

Listen to music you love

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Complete a much needed to get done chore…it will give you a sense of accomplishment

Watch the sun set

Eat a piece of warm apple pie

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Ask for help

Give yourself a break

Go for a walk

Get some fresh air

Buy a shiny new pair of shoes

Read a good book

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Do some bird watching

And if today is lousy…remember tomorrow is a new day and what a difference 24 hours can make!

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My Life As A Homemaking Society Gal…Or Something Not Quite Like It And The Detours Of Life!

 

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Nearly two years ago now, I made an incredibly difficult decision to “retire” from my career as a healthcare administrator. Man does time fly! Never in all my years did I think I’d be retiring at the age of 43. But sometimes things happen in life that take us down roads we didn’t expect to take. Detours, I suppose.

And one detour in my life came in the form of a disease called Sarcoidosis. I have to say that it’s pretty typical of me to get a “rare” disease…something no one has heard of and that is hard to diagnosis. I like to do things with a little extra panache. If I am going to do something, I go all out.

So, what does a 43 year old retired gal do? At first it was a lot of lunch dates and shopping to be honest. Sounds like a dream, right? But in truth, after awhile it becomes hollow. No, shallow is a better word.

Then I met a new friend in the neighborhood. She’s a bit older than me, extremely kind and very social. She got me involved in a club called “Newcomers”. The purpose of the club is to provide new residents of the area or newly retired residents of the area an opportunity to make new friends and to contribute to local charities through fundraising and volunteer work. It’s a group of ladies who, for the most part are at least ten years older than me. Many of them live in very wealthy parts of the community and most have a bit of a “society” air about them.

Don’t get me wrong, they are as a whole, an exceptionally kind and very generous group of ladies, many of whom work very hard to make this a successful and meaningful group benefiting a number of local charities through the organization of successful fundraising events. It is truly worthwhile.

I simply never thought of myself as a society gal doing good works! I simply never thought of myself as someone who wouldn’t work until I was at least 65 and knowing me, probably 70. I don’t have kids and other than my dogs, my career was my baby. I put so much of myself into it for twenty plus years. I never thought it would end so soon or from a “rare” disease. Detours!

But my friend got me to join this group and suddenly I was going to lunches at country clubs and having wine and appetizers in swanky neighborhoods. I was attending fashion shows and silent auctions.

This coupled with the fact that I am now also a housewife…a word that is so incredibly foreign to me that I almost chock on it. Not that there is anything wrong with being a housewife. There isn’t. But let’s face it, most housewives actually have full time jobs raising children. I do not. I am simply a wife who stays at home.

So for the first year, I pretty much took on the house like I was still running a business. I made lists of chores and completed them one after the other, clean closets, paint closets, paint kitchen, etc…A lot of smaller but much needed little projects around the house were getting done. Now mind you, it took me awhile to do a lot of them because the fatigue from the Sarcoidosis would eventually kick my butt. But still a wonderful effort was made and there was much to still be proud of!

Once again though, I found myself in a very strange place. How had I become a homemaking society gal? What happened to the hard charging, workaholic, constantly worried, always obsessing woman I had always been?

I swear when I looked in the mirror, especially during that first year, I had absolutely no idea who was staring back at me. I am not a housewife and I am not a society gal. I am not a person defined by disease. I am no longer a person defined by a career.

There are days and times I am still at a loss. These are the times I remind myself that I spent a lot longer on the journey going in one direction than the direction I am heading now. Detours! I need to take time to allow this new life to sink in. I didn’t start my career at the top of my field. I had to work at it. In some ways, this is the same thing in reverse. I didn’t ask for this retirement, it was forced on me by health issues but I have time. I have time to figure it out.

In the meantime, I suppose I should try, as much as I am physically able, to enjoy the detour presented to me because if I don’t I might miss some pretty interesting scenery a long the way.

Dog People

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I may be a little bias (see above) about this but here goes…

Dog people, that is, people who love dogs, are in my humble opinion a nicer group of people than nearly all others. I’ll share  “scientific” research to back this up later.  But first let me share my own observations. Such observations are best made when I take my dogs to the park for a walk.

I think dogs not only have the ability to sniff out cancer but I believe they also have an ability to identify the hard hearted, the meanies of the world, the unhappy lot. When I take the dogs for a walk at the park and observe how people respond to them, I can immediately tell who is likely an old wise soul, who is a fun or kindly person and who is probably an unhappy loner.

The old wise souls usually get down look the dogs in the eye and as they pet the dogs, the dogs are calm and zen like. When the fun or kindly people stop me to ask if they can pet the dog, the dogs usually get excited and jump on them, behavior not typically allowed but behavior these folks encourage as they laugh and laugh at the dogs excitement and utter adorableness. I mean seriously how can you not love these nuts balls?

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Then there are the meanies. They are people that just glare at me with disdain as if my mere presence at the park with my beautiful dogs has ruined not just their day but their entire week. These are generally sour faced people anyway, unhappy to their core. But the way they respond to the dogs tell you all you need to know. It’s not that they look this way because they are having bad day. This is the way they interact in the world all the time. This is who they are. My dogs usually attempt to give these people a subtle lick as they walk past us which if often met with pure unadulterated disgust. And it are these people my dogs help me avoid like the plague.

In fact, if you don’t like dogs. It is very hard for you to be part of my world. And frankly, I don’t know if I want you to be part of my world because I have to question your character except of course if you have an allergy to them. That I can forgive.

Dogs are by far some of the coolest animals on God’s Green Earth. Dogs provide companionship and near unconditional love. The only thing they ask for in return is your love. Dogs are good for our health. Petting a dog can reduce high blood pressure and they can warn someone with epilepsy that they may have a seizure soon. Dogs protect us. I mean how often have you heard of “guard cats” or “guard birds”, right? And they work in law enforcement to sniff out bad guys, illegal drugs and find lost children. You’ll never find a cat doing that!

Here comes the “science”. While cat people may be smarter, according to studies, dog people are friendlier. That’s right researchers have studied this concept! In one research study 600 college students were surveyed and asked among other things if they preferred cats or dogs. While 60% of those surveyed said they preferred dogs, only 11% preferred cats. The rest either preferred neither or liked both equally. And what researchers found from this study, albeit very limited, is that dog people are more out going. They are friendlier and they follow rules. Cat people on the other hand tended to be more introverted and sensitive and smarter. The thinking being that because they are more isolated they turn to books more than dog people. Here’s the link of you want to read the article yourself: http://www.cbsnews.com/news/dog-people-and-cat-people-have-different-personality-traits-study-finds/

Now mind you, I”m not against cat lovers. I think what scares me are people how don’t like pets at all. I just happen to be a dog person and convert at that. Once upon a time, I much preferred cats. We didn’t have dogs growing up so I didn’t know any better. But when I met my husband he had a dog and that’s when my love affair with dogs began. I came to appreciate their clownish, loving behavior on a level I never could with the serious aloof nature of the cat personality.

Besides did you know that research also shows that dog owner tend to be in better physical health than other people? Dog owners tend to get more daily exercise because this is one fun way they can interact with their pet. And according to another study dog owners are better able to handle stress and this is in part because they are generally healthier than cat people or people who do not have pets.

In my experience of having been both a cat person and dog person, I find that I am, in fact happier, owning dogs. Dogs can be exhausting, I won’t deny that. On a cold winter’s day they can look at you with begging eyes, because they don’t care it’s cold out, they just want to take a walk. They can come up to you with toy after toy begging you to play with them while you are busily attempting to complete some other project that doesn’t involve them. But dogs will no matter what you do, always love you and they will follow you anywhere.

Dogs rule! And their people are cool!

Sick Of Talking About Being Sick

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So, I thought I would write a daily blog and I’ve done so for about a month and a half now. It was helpful for awhile but in full disclosure some of my blog posts were things I have written in the past. I just did a rewrite and posted them. Lazy, perhaps…I don’t know.

What I do know is that right now I am sick of talking about being sick. Sick of talking about the challenges of being sick, sick of talking about how my life has changed from being sick, sick of talking about the insights I’ve gained from being sick…I’m just plain sick of talking about being sick! It’s boring to me right now. Blah. Just plain boring.

And I think that is actually a good sign. A sign that I’m still in the fight for normal. And normal is such an important thing once you know how hard normal can be to hang on to.

I think one thing this blog has taught me is that if you’re not very careful, your illness can define you. Just as it has a way of taking over your body, disease can have a way of invading your mind and creeping way too deeply into your life. I’m not going to let that happen. I don’t want to be one of those people who is happy to be defined by their illness…or okay with being somehow disabled. No thank you and no way!

I’m a lot of things…being sick is only one of them and is only a part of me…not all of me.

So today, I provide no wonderful insight, no words of wisdom, no validation that life goes on in the face of challenge. And tomorrow, I may not write a darn word. We’ll see.

I will only write when the mood strikes. After all, being a blogger now doesn’t define me either…it too is only part of me!