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.

Cha-Ching!

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I’m just confused. I spent the last 6 months being diagnosed by what most consider to be top-notch doctors. Then I saw a doctor today who told me that my diagnosis was invalid. I’ve been using a software program to track trends, but this doctor told me the only way to see trends is to write them down on paper by hand. And apparently the only valid tests are ones run by this doctor’s office.

People wonder why healthcare costs so much. This doctor only considers “his” testing to be valid. Cha-Ching! He spends an hour in the room (mostly talking to himself). Cha-Ching! Prescribes a new medication that has no generic equivalent. Cha-Ching! Schedules monthly follow-ups even though the recommendation is quarterly. Cha-Ching!

I’m actually more concerned about what his “treatment plan” would do to me. I guess he didn’t consider anything except what he saw today. He plans to treat me with a medication I know I’m allergic to. He wants me to go through some very unpleasant testing just to “verify” my diagnosis. Oh, and it’s a 3 hour round trip to visit his office.

I guess he was a bit upset when I told him he was disinvited to be a member of my healthcare team. He called me non-compliant and difficult. And a few other things. So, the search begins again.

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.

Teach Them When They Are Young

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This is a status from one of my social media friends, Francine Maitland Abbot. She asked that we share it far and wide. For those of you following my blog, this is an opportunity for you to help spread awareness. Please re-blog!

Okay please every hang in here for a minute since this is going to be a long post. Please think about it, do it, and share it!

Chris and I went to see Catching Fire on its release weekend. It had been out for 2 days when we decided to go see it. I chose the theater that was showing it with the most viewings and picked a matinée hoping it wouldn’t be crazy packed. We arrive a bit early to the theater and of course it’s busy. I’m in my wheelchair with Rocket at my side while Chris buys our tickets. We go into the theater and I see that EVERY single Handicapped seating area is taken by able-bodied people.

Not just people, but young teenage girls in groups of 4 all texting, giggling, and mowing down popcorn.  That means that 12 seats are taken up that shouldn’t be. The accessible seating at this theater is designed so there is a row entirely set up for the disabled. There are 3 groups of 4 chairs all with a space at each end of them so that the person in a wheelchair (or someone with a walker or unable to do steps or needs easy access to a bathroom) can sit next to their friend or loved one while watching the moving. It also gives space for a Service Dog if one is along. There is space for 4 wheelchairs.

I realize that I will have to repeat the same thing that I had to do last Christmas at a different theater when I asked a man and his son to move over one seat so that I could sit in my designated seating area with my husband and SD. I should NOT have to ask people to do this! I take a look around at all the people, and I can feel the frustration welling up inside of me as I look at the blue wheelchair picture signs that are posted on EVERY SEAT IN THAT ROW clearly marking it as the obvious accessible seating. I can feel Rocket shift next to me eager to get settled, and Chris whispers we better get seated.

So I ask a group of the girls to move, and before they can answer their mother is actually sitting in the next row up and asks me what the problem is. I explain the problem is that I only have ONE choice where I can sit, and they have several other areas to choose from and that they are sitting in a clearly designated section that is not for them, and that I would like them to move. At this point the girls start to get up, but the mother looks unsure if she is okay with this, so I tell her calmly that I can go get a manager if there is going to be a problem. Finally the girls move, and even though everyone in the rows closest to us heard me, none of the others move. I pull in next to the seat Chris is sitting in, and Rocket lays down at my side.

I hear the girls say they didn’t understand why they had to move, and their mother says nothing to them. All I can think is are you freaking serious?! I want to sit with my friend, hold my husband’s hand during a movie, share a drink and snacks just like everyone else does–and I don’t understand why that is such a hard concept. Then I get to thinking about the fact that all of those girls sitting in the accessible row were much too young to drive, and most likely had parents sitting a row or two above just like the ones that I made move. Yet, no responsible adult told them it wasn’t okay to take those spots in the first place (nor even after I loudly stated my misgivings), and that someone else might truly need them.

This makes people with disabilities invisible and only adds to the ignorance that those of us that are disabled have to deal with on a daily basis. If their parents would teach them to respect areas reserved for disabled (whether seating, parking, or bathroom stalls) it would teach them to respect the disability community as a whole.  Then they could learn to appreciate the cultural differences that come along with disability as well, and that we aren’t so different in the ways we want to enjoy and experience life and all it has to offer. It’s no different from them buying a concert ticket or buying a plane ticket with a designated seat number only to find out that someone who didn’t buy that ticket is sitting in your seat, and I’m guessing that wouldn’t be acceptable, they would make them move and claim their seat. The theater workers don’t check or enforce that those areas should remain only used by people who they are there for.

Please think about what I’m saying and SPEAK UP PLEASE if you see an injustice occurring. If you remain silent in a situation like this, you are still taking the side of the person that is in the wrong, use your voice to do some good and see if you don’t feel better about yourself. Spread the concept/word to friends and family, and I implore you to teach your children to respect people of all differences, including disability. Most people would not accept their child bullying another, allowing them to use racial slurs, let them attack someone else’s religion in a hateful manner, or steal–and allowing such apathy and ignorance towards disability is no less of an evil so why tolerate it?

Be a positive role model and pay more attention to your surroundings, trust me it will make a difference to someone! If you don’t think there is truth in what I’m saying, and that America has a LONG, LONG way to go in the area of Disability rights, than you need to open your eyes!

If you would like to share this status, please copy and paste since hitting the share button will only allow mutual friends of ours to see it, anyone on your list that doesn’t crossover on mine won’t be able to view it, which the copy/paste should fix. Just list my name with it please.

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Me and My Dog

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Trust is built with consistency.~Lincoln Chafee

Much has been said recently about service dogs. I have two, one that detects diabetic issues and another that helps keep me from falling over. One is a blue heeler while the other is a Great Dane. One flies under the radar and they other, well, draws a lot of attention. Honestly, they both draw attention. Today I had my heeler with me as I ran errands. It’s really cold right now, so she was wearing shoes and a coat. I had at least a dozen people ask me how they could bring their dog everywhere with them.

Let me make something very clear here. I love dogs. I have two pets in addition to my service dogs. But those two are exactly that, pets. They are my companions at home. They lack the training to be out in public like my service dogs. I’m not talking about their manners, which really are awful. They were never trained to mitigate my disabilities.

For every person that said that it must be great to take my dog everywhere, I know there are at least a dozen more thinking the same thing. I will admit that it is great to take my dog everywhere, but not for the reasons you think. You see, my diabetic alert dog (DAD) keeps me safe. She can tell when I’m about to have a problem. She carries all my supplies in her packs. She wakes me up at night when my diabetes is acting up. In short, she is my lifesaver.

I told our vet the other day that Blizzard and I have a healthy co-dependent relationship. She watches over me and I take care of her. That means taking the time to put on her shoes (similar to putting shoes on two toddlers at the same time). Remembering to pack her water bowl and bottles of water. Being stopped while shopping and having strangers ask very personal questions. And explaining to people that Blizzard is not a pet and that slapping a vest on a dog does not make it a service dog.

I would guess that those people who want to bring their dog everywhere haven’t really given much thought to how ignorant they sound to a person with disabilities. A service dog mitigates disabilities. Mine makes it possible for me to function with way fewer hospital visits. Would you like to take on my disabilities so you can bring your dog everywhere? That’s what you’re saying when you tell me how cool it would be to have your pet with you. I don’t see people lining up to become disabled just so they can take their dog with them.

If you have the good fortune to run across a service dog team, please respect the team. The handler most likely doesn’t want to disclose information about their disability. Whistling and making clicking noises at the team could create a life or death situation by distracting the team. I feel that snapping pictures without permission just because I have a service dog implies I’m some kind of zoo animal on display. I won’t be rude most of the time, but I’m not out with my service dog for anyone’s entertainment. I have things to do and places to go. Don’t be offended if I give you a short answer and walk away.

Blizzard and I have worked together for 3 years. We know each other’s habits and can tell how each other feels. It’s a relationship built on trust. And many, many hours of training. I never envisioned myself counting on a dog to save my life every day. Then again, I never envisioned myself having debilitating conditions.

http://www.ada.gov/service_animals_2010.htm

http://www.cbsnews.com/news/pets-posing-as-service-dogs-make-life-tough-for-people-who-really-need-animals-help/

 

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Change Should Happen, But…

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Those who don’t know history are destined to repeat it.~ Edmund Burke

Another eye-opening day for me. I had the opportunity to visit the elementary school my children attended many years ago. This time I was the outsider, unknown to most of the staff. The school has had three principals and four assistant principals in the last eleven years. It went from being highly sought after as a placement to being on a watch list for poor performance. Not to inject too much politic…but my school mill levy has tripled in the last 11 years. My home state just shot down a state tax increase for education. And, surprise, our politicians can’t seem to understand why no one wants to give money to education.

But, I digress. After the meeting inside the school, I sat outside and observed recess for 4th and 5th grade. I was sitting in my parked vehicle. Lest you leap to the conclusion that I had some bizarre reason for watching, I was with a parent who wanted to see why her kid was being “written up” for inappropriate conduct during recess. What we saw was very enlightening.

The past…when my son was in 3rd grade at this school, two kids pinned him face down in the gravel and stomped n his back until he was bruised and peeing blood. The school insisted it could not have happened under their watch. I’m pretty sure I would have remembered if it had happened under my watch. He didn’t leave for school in that condition, he came home off the bus in that condition, ergo this happened at school. Oh no, I was told. Our students are supervised by four adults who each stand in a corner of the playground watching for these things. Well, I got mad and filed a complaint which was not well received, but was litigated out in favor of my son. The terms included increased playground supervision.

Today, I watched four women (3 teachers/ 1 para-professional) stand together in a cluster by the door with their backs to the playground. I saw students practicing what I can only assume was their form of martial arts – by hitting and kicking each other.  I watched a female student jump on a male student’s back for a piggy back ride. I saw 6 children attempting to build a human pyramid, only to have a seventh child come over and push the top child off so all came tumbling down. I watched a child fall off playground equipment and limp away in tears. A bit later, I watched as 4th grade girls jumped on their male teacher (two providing supervision for over 100 students) and he provided piggy back rides. I watched children throwing rocks at passing cars. I think you get the idea.

What I didn’t see was supervision. Yes, there were adults out on the playground. Most of the time, they had their backs to the students and were engaged with each other. The parent I was with wanted to know how many of these other students had been written up. I told her I would have to say none as the adults weren’t watching.

We all wonder where bullying comes from and how it goes so far, so fast. In 30 minutes of observation coupled with my prior experience and that of the parent with me, I can safely say that it’s because kids will be kids and if the environment is right, they will hurt each other. I have absolutely no doubt that what happened to my child could easily happen to another child at that school.

Before everyone berates me for being a helicopter parent, let me just point out that this was one snapshot, eleven years after my son’s incident, and nothing has changed. The school and the district have not held up their end of the bargain. It’s not a matter of what ifs. It’s only a matter of when. There is enough money in the district budget to send teachers on two-week fully paid “trainings” for curriculum in Canada but not enough to ensure adequate and appropriate supervision on the property. There is a cry for safety in schools and yet not even the most basic situational awareness was demonstrated today. I sat in a parked car for 30 minutes, outside an elementary school playground and no one questioned me. I saw children almost a quarter-mile from an adult and the adult wasn’t watching. We don’t need to wrap our kids in plastic bubbles, be we should expect that someone knows what’s going on.

So, I leave you with this thought: History does repeat itself. When we fail to learn from our mistakes, it repeats itself more frequently. Throwing money at the problem isn’t always the solution. Sometimes, you need to look at yourself and ask if you’re doing the best you can do at your job in life.

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