Category Archives: Life Happens

Woof, Woof

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The dogs with the loudest bark are the ones that are most afraid.~Norman Reedus

Most people who really know me would tell you I’m a logical, methodical thinker. I’ve been this way for as long as I can remember. I look at situations from many different perspectives, analyze the information and choose a path that leads to the desired conclusion. To some, this comes across as manipulative or scheming. To others, it seems to be a knack for predicting outcomes. I found out tonight that to yet others, I appear defensive.

Oh yes. I was drawn into a service dog drama. For those not familiar with these incidents, they occur when one person feels they have the “right” perspective on something related to service dogs. Much like any discussion on a topic people are passionate about, there are always opposing views. I don’t think it’s unique to discussions about service dogs yet it seems that there is more baiting and needling within this community.

I’m sure many of you are familiar with the “lies, damn lies, and statistics” methodology. In short, the more “facts” you can throw out, the more convincing you appear. The problem is, anyone can find “facts” to back up their position. Information flows freely through the Internet and you can find other people who perceive things the same way you do with just a few keystrokes. Just because you have more “facts” in your argument does not make your argument more valid.

In my experience the harder you push for your “facts” to be believed by others, the more you have to hide. It’s one thing to take a stand and state your beliefs. It is an entirely different thing to intentionally mislead and knowingly agitate people just for fun. In my book, that just makes you a bully.

So read the quote above. Think about the people who push “facts” at you and remember that a loud bark does not necessarily indicate confidence. Sometimes it’s just a distraction to keep you from pursuing independent thought.

 

Atlas Shrugged

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If you’ve ever read any of Ayn Rand’s writing, you know the focus is on a dystopian future filled with philosophical implications. I originally read her works over 30 years ago as a teenager. Then, they seemed to be a rallying cry for my rebellious self to shirk tradition and become a “forward thinker.” Now, her writings seem more predictive in that many of the situations presented in her books seem to have come true.

Atlas is a Titan from Greek mythology who crossed the Gods and must now hold the sky up for eternity. Many people believe Atlas was charged with holding up the Earth. Either way, the implication is that a sole being is responsible for maintaining the balance. That is a mighty burden.

Until recently, I felt I had found a kindred spirit in Atlas. I had crossed the powers that be and my punishment was to forever battle the weight of the world. For 4 years now, I’ve been fighting to find out what was making me so ill. My doctors fought me literally every step of the way. I would research a possibility and then be told that there was no way that could be my problem. As this process repeated itself, I became very depressed. I felt like I was the only one who was interested in discovering what was happening to me.

Last year, I was able to convince one of my doctors to send me to The Mayo Clinic. He did it reluctantly and told me that the only reason he was writing the referral was to convince me that my illness was psychsomatic. When all was said and done, I received two diagnoses. Neither one could be “faked” or deemed psychosomatic. From November until January, my doctors continued to deny I was physically ill. They refused to provide treatment for these illnesses, claiming that I was making up my symptoms. At the end of January, a decision was made by the medical group to fire me as a patient. They claimed I used too many resources and filed too many complaints about my care.

I’m sure the medical group felt they were punishing me by forcing me out of their system. In the last 6 weeks, I’ve discovered that the medical group actually did me a favor. And today, I shrugged.

I now have providers who see me as a person and are at least professionally concerned about my well being. Today, I had a provider caution me about corporate policies and what I needed to do to ensure that my medical needs were being met without crossing corporate decision makers. I have been reassured that I have physiological issues that are severe, but manageable. I was told, very compassionately, that this is my life now. No more tests, no more medication trials, no more feeling like a guinea pig. We’ll follow new developments and talk about if they are worth trying for me. I was given permission to live again.

This. Is. My. Life. I don’t consider that a death sentence. It’s a challenge. Live fully. Love unconditionally. Enjoy every sunrise and sunset. Stop worrying about my medical journey. “We’ve” got your back. And with that conversation, I realized that I was going to be okay. No promises of smooth travels, but it will be okay. And I can live with that.

“Home” by Phillip Phillips

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home….

One Way Streets

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There is some self-interest behind every friendship. There is no friendship without self-interests. This is a bitter truth.~ Chanakya

Lately I find myself re-evaluation my priorities. My health issues are happening more frequently and with greater intensity. While not life-threatening, it is annoying. This situation is also making it harder for me to sustain relationships that are one-way streets.

We’ve all been there. Friends of convenience that you share a common interest or two for a while. Friends that seem to pass through for a while. Relationships that never seem to really take off. Relationships that become forced over time. All in all, these relationships are very taxing for me.

I count myself lucky that many people have passed through my life. Each relationship has enriched me. They helped me see the greater diversity that makes up my life. As they fade and disappear, I mull over what brought us together in the first place. The reasons are as different as the relationships. Some were because our children were in the same activity. Some were because we had similar life situations. Others were through professional organizations or jobs. Many were because of a common interest or two. And, when circumstances changed, we parted quietly and moved on to the next stage of life.

Recently, I realized that many of my relationships were one-way streets. I was working very hard to make the friendships happen. I would schedule “dates” and be the one who initiated contact. The more I examined things, the more I came to understand that reciprocity was missing. In one case, I learned that a relationship was based not on mutual respect, but on what I could do for an organization. In another I looked backwards and realized a person didn’t make time for me and repeatedly broke “dates” because they didn’t feel like going out. Then, a few days later, I found out they had received a “better offer” and had gone out with someone else.

It hurt. I know I’ve lost many friends because of my illness. Some were “fair weather” friends who just decided I was too much work. Others didn’t know what to do, so they did nothing. A third group starting telling me they just didn’t want to hurt my feelings. I even had a group that was solely based on what I could do for them and they had no intention of reciprocating at all. At first, I missed these people and mourned the loss of the life I had. And then, I realized that my garden was blooming brighter and some of the low-lying flowers were now receiving sunlight. Those flowers have become the garden I cherish and look forward to spend time in.

There is still some bitterness, but mostly directed toward myself because I didn’t weed my garden sooner. I know that I am the only one who can change myself. Expecting others to change for me seems to only lead to heartache. I had to grasp the concept of my own self worth before I could see which parts of my garden could be weeded and which parts needed nurturing.

The bottom line is that even friendships run their course over time. There is no success to be found in forcing a one way relationship. While each friendship may develop because of self-interest, if it never moves beyond that initial phase it probably isn’t worth expending the time and energy required to keep it alive.

Advocate

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Earlier this week, I was asked why I advocate. The discussion was both about my own advocacy in pursuit of healthcare and the advocacy I do for people affected by disabilities. As I tried to explain that being a “sheeple” was not in my nature, the following two pieces came to mind.

“Once, on ancient Earth, there was a human boy walking along a beach. There had just been a storm, and starfish had been scattered along the sands. The boy knew the fish would die, so he began to fling the fish to the sea. But every time he threw a starfish, another would wash ashore. “An old Earth man happened along and saw what the child was doing. He called out, ‘Boy, what are you doing?’ ” ‘Saving the starfish!’ replied the boy. ” ‘But your attempts are useless, child! Every time you save one, another one returns, often the same one! You can’t save them all, so why bother trying? Why does it matter, anyway?’ called the old man. “The boy thought about this for a while, a starfish in his hand; he answered, “Well, it matters to this one.” And then he flung the starfish into the welcoming sea.”
― Loren Eiseley, The Star Thrower

This reflects my own struggle to get doctors and healthcare professionals to understand that I am deserving of their time. I have recently been feeling that my health is only a priority to me. My last set of physicians dismissed me while I was medically unstable because I “used too many resources.” Fortunately, I believe I am now with a group that is interested in my care. The last two weeks, I been able to establish care with providers who have taken the time to hear my story. They have not dismissed my illnesses as psychosomatic. I am now receiving the care that should have been happening for the last two years.

“First they came for the communists, and I did not speak out—
because I was not a communist;
Then they came for the socialists, and I did not speak out—
because I was not a socialist;
Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—
because I was not a Jew;
Then they came for me—
and there was no one left to speak out for me.”

― Martin Niemöller

I have considered this piece as one of the most important lessons that came out of World War II and the Holocaust. It projects the effects of apathy on the human race. For me, it gives the impetus to advocate for those whose voices may not be strong.

Both pieces highlight the importance of doing something…whether for yourself or someone else. When you turn away from others, you are denying yourself the opportunity to lift someone else up. And there is really nothing quite like the feeling of making a difference.

Orphan Zebra

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In the United States, the only place you’ll see a live zebra is in a zoo. I’m sure there are exceptions, but we don’t have roaming herds of zebras in the streets. Which means you have to go out of your daily routine to see one. Which, by definition, makes seeing one an unusual occurence.

In the medical field, physicians are taught that when they hear hoofbeats, think horses not zebras. Meaning that most illnesses are common enough that physicians see them all the time, like horses in the United States. Every once in a while, a person shows up with something that isn’t a horse. These diseases are referred to as “zebras” because while uncommon, they have been identified. Zebra illnesses are absolutely no fun. Most don’t have enough research dollars attached to them to make studies viable. So, people with zebras tend to stumble along, treating symptoms as they appear and hoping for the best.

Then there are people like me. I’m coining the term “orphan zebra” here. Not only are some of my illnesses zebras, they are so rare that there are fewer that 300 confirmed cases worldwide. We’re orphans in the medical field because doctors only read about these illnesses. Our illnesses are often mistaken for horses because the doctor has never even read about the illness. And as far as treatment goes, unless some fabulously rich individual happens to take pity on us, we muddle through because no one wants to research something that isn’t funded.

I think the worst part about being an orphan zebra is that no one believes these illnesses exist. There is very little research and you have to dig through many medical journals to find it. Doctors are uncomfortable with the findings because they’re not “normal” and thus out of anyone’s area of expertise. You can treat the symptoms, but there is no guarantee the standard treatment will work, because the treatments were developed with horses in mind.

The second worst thing for me is knowing exactly what is wrong and not being able to do anything about it. I have the diagnosis. Now what? Well, nothing. I can’t travel to an exotic location where the one person who is researching these illnesses lives. There are no clinical trials. It’s all hit or miss, mostly miss unfortunately.

The third thing that bothers me is that people with similar symptoms suddenly believe they have the orphan zebra. I’m not naming things in this post because I’m tired of others assuming they have these orphan zebra illnesses. This is a personal pet peeve. In some social media groups that focus on chronic illnesses, it’s called “the dyingist game” and people post to one-up each other on who is the sickest. This kind of behavior detracts from the seriousness of the illness.

I will give one example. Our local news outlets have spread the word that this year’s flu is deadly. In my home state, 23 people have died from it while over 25,000 cases have been reported. I was in a local emergency room last Tuesday. There were people there who had been waiting over 4 hours to be seen. Many were school aged children who were running laps around the waiting area. As I watched them be called back and sent out 15 minutes later, bottle of acetaminophen in hand, I wondered why they didn’t just stay home and let the bug run it’s course. Then I realized the media had turned a horse, the flu, into a zebra.

In the meantime, my zebras were running rampant in my body to the point where I was about to pass out. After 2 hours, I was placed into an ER room. I swear those zebras trampled my innards, worked up a sweat that translated into a fever for me and burned up all my glucose causing a diabetic emergency. A bottle of pain reliever was not going to fix this.

My piece of wisdom for today…don’t go looking for zebras. As the United States moves towards universal healthcare, accept that you may contract some horses and take responsibility for recognizing that and caring for yourself. Going to the hospital is not “cool.” Resources are going to get scarcer and you’ll be more comfortable at home anyway. Should a zebra come knocking, make sure you do seek appropriate care and learn all you can about how to care for your zebra. And should your genetic fate include an orphan zebra, well, learn as much as you can and keep an open mind.

Stage 2

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When angry, count to four; when very angry, swear.~ Mark Twain

There are supposedly five stages of grief. I personally believe that each part of our lives, each event, has its own five stages. Today, I’m in stage 2. I’m opting for humor because otherwise I’ll cry.

I’m a diabetic. I’ve known this since 2002. I know it’s a progressive disease. I’ve studied treatments and outcomes. I studied complications. I went in for my check-ups like clockwork. I followed a decent diet, although I’m sure it could have been better. But, hey, we’re all human and chocolate is a match made in heaven.

I’m angry today because I’m realizing how much has been stolen from me by this disease. I spent four days last week dealing with complications, two in the hospital. Don’t get me going on healthcare again…let’s just say it was a less than optimal experience. I haven’t been able to return to my volunteer job that I love very much. My life is like PMS on steroids right now. People are afraid to speak with me out of fear that they will set me off.

That’s probably a fair assessment. My inner sailor has emerged with enough force to make even a veteran sailor blush. I feel sorry for the person who cut me off on the freeway a while ago. If everything I yelled comes true, they’ll look like a hobbit by nightfall. Because that’s all I can do. Yell at the Universe. Not as satisfying as one would hope, but it’s all I’ve got.

Please don’t throw a pity party in my honor. I want to be angry. I want to let it all hang out. I want people to know how messy life can be and for them to be grateful for everything they have. Be grateful that you can still go camping or horseback riding. Be grateful that you can read a magazine without a magnifying lens (thank you Jeff Bezos for installing large print options on my Kindle!). Be grateful for every little thing in your life because you never know when you may be robbed of the things that bring you pleasure.

The winds are blowing….

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You can’t fix stupid, even with duct tape. But it does muffle the sounds.~ Anonymous

This is not a political post! Is is about healthcare and the impact of new legislation in the United States. And, well, the stupidity of the whole thing. So, I guess, in a way, it could be construed as a political post.

Today on social media I was involved in a discussion about supply and demand of medical services and how the US had turned a corner on this issue. It was all I could do to not shoot water through my nose. Seriously. Several individuals put forth the “we will all be better people” for this change argument. More than a few have just discovered that their premiums and co-pays are increasing by 20% or more, but their coverage is decreasing.

On another friend’s page, I was chastised for expecting to be able to see my doctor in a timely fashion, say 2 weeks, for an “urgent” issue and 3-4 weeks for “routine” care. Apparently, I’m expecting too much. The current wait time for an “urgent” appointment is 4 weeks. Routine requests are 6-8 weeks. All I asked was at what point did supply meet demand. The answer seems to be 2 months in advance.

I am also apparently an “entitled” person because I have these expectations. I should be grateful that I have insurance shouts one person. I should allow those who are sicker than me to have first dibs on my doctor’s time. Waiting in a queue for 2 months really isn’t that long piped up another. Move to a different country if I don’t like it advised another.

The funny thing is, I have been using government run healthcare for 23 years. My husband is retired from the military. I can say from experience that having the government in our healthcare is not a good idea. Rationing? Yep, that’s been part of the plan for 23 years. Bureaucrats making healthcare decisions with dollar signs in their eyes? Ummm, been there too. Can’t put a price on good healthcare calls another commentator.

Back to duct tape. Healthcare certainly is beyond repair. You know it’s sad when people start talking about flying to Europe or Japan, paying out-of-pocket and receiving better medical care than here in the US. Europe is not universally known for great healthcare, but apparently it beats what’s being offered here. I don’t expect things to improve. Maybe I am being pessimistic. I’m already dealing with a system that offers no incentive to improve my health. In fact, most times they seem to discourage it by restricting what care is available to me. Two months is a long time when you’re living with my diseases.

So, as healthcare continues to be discussed in the coming months, just remember this important safety tip…the shiny side is visible after application.

Reap What You Sow

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“A time to build up,a time to break down
A time to dance, a time to mourn
A time to cast away stones,
a time to gather stones together.”~ The Byrds “Turn, Turn, Turn”

The chaos of the Holidays has passed. Regardless of how you celebrated, there were opportunities to catch up with family and friends over the last month. Memories to be made. Chances to heal old wounds. I hope everyone took just a few moments to move themselves forward just a bit this year.

It is tough seeing all the posts on social media about people I care about being lonely and scared. Reading about the struggles many are facing with their health, finances or family. Wishing I could just give each one a hug to let them know someone does care. Because, that’s all it takes. A hug, a smile, a word of affection. These simple acts can change someone’s world.

As 2014 approaches, consider the people whose lives you touch. Remember those whom you don’t see and send them a quick cyber-hug. Help your friends to see that the world is indeed a beautiful place with much to enjoy. None of us knows what another person is struggling with, but we can all relate to struggling. Skip the weight loss resolution this year and instead resolve to spend more effort connecting with the people you care about, whether it’s in person, with letters and cards or via the Internet. I promise you it will be more fulfilling than skipping a doughnut here or there.

Hourglass

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Best start putting first things first.
Cause when your hourglass runs out of sand
You can’t flip over and start again
Take every breath God gives you for what it’s worth~ Kenny Chesney, Don’t Blink

It’s that time of year again. Yes, winter. Bet you thought I was going to talk about the various holidays. Nope, just winter.

Actually, this entry is about every day. It seems that during winter, people get wrapped up in how many people they can meet up with, how many dinners they prepare, how many cards they send out and so on. It’s like cramming a year’s worth of living into 45 days.

Personally, I stopped trying to cram it all in a few years ago. My health declined, my energy level declined and, if I’m being honest, I became depressed about a number of things. There were some rituals I held dear that my family didn’t share any enthusiasm for. Twelve years of military hustle and bustle set me up to expect holiday parties. And then, I realized that I neglected some very important people in my life in my rush to meet expectations.

What good was trying to pass on tradition if my kids hated it and would really rather do something else? Why was I running around spending money to show how much I “loved” someone? And the most important question of all…what about the rest of the year? Was I nurturing relationships all the time, or only when society deems it socially necessary?

Because life is about relationships. It’s about having a group of people in your life that you enjoy being around most of the time (yes, most because all is too confining). It’s about providing mutual support, that shoulder to cry on or that ear to listen. Not just once a year, but all the time. Maintaining solid relationships takes work, not just a dinner party once a year.

I’m not saying “Bah, humbug” to the winter season. I am saying that if we put half as much effort into our relationships throughout the year as we do right now, we just might discover how truly wonderful our friends are. I purposefully do not host parties during the early winter months. I wait until there’s nothing “exciting” going on and then invite people over. I get to actually talk with my friends instead of whipping through the kitchen making sure everything is perfect. No one is in a rush.

My challenge to you…look at everything you’ve done so far this winter. Yes, I know technically winter doesn’t start until December 21, but you know what I mean. Are you building memories or frustration? Are you so busy you aren’t enjoying and cherishing your relationships? Now, how could you spread things out so you get to enjoy the people in your life all year long?

Why treat one part of the year as special when it comes to your relationships? Not to be too morbid, but you never know what the next year will bring. Embrace yourself and your friends every day, because you can’t turn the hourglass over again.