Category Archives: Uncategorized

Who Are You 2

Image

Reply

I have no issues with my identity.~ Rashida Jones

In the last 24 hours, I’ve had reason to contemplate “identity” from various points of view. If you’re going to throw yourself to the social media wolves, you have to expect that kind of thing to happen. My last entry generated some words about how I define myself solely as a medical patient. Those words were not meant kindly, but were rather an attempt to censure me. It seems I touched a nerve.

For the record, my life does revolve around medical care. This is primarily due to the fact that without medical care, well, my life would be very different. I go from one appointment to the next, one treatment to the next and one more set of challenges shows up at least weekly.

I do not consider my illnesses to be my identity. That would be short-changing all the other aspects of my life; wife, mother, sister, teacher, mentor and community volunteer. While illness is certainly part of me, it’s not all of me.

ci2

It Wasn’t Personal Until…

Posted on by
Reply

If you don’t like something, change it. If you can’t change it, change your attitude.~ Maya Angelou

I’m the kind of person that believes in live and let live. First do no harm is one of my favorite statements about life in general. I don’t take many things personally because we’re all human beings who make mistakes. But, at some point, you realize that someone has risen to such a level of incompetence as to cause harm. At that point, I move into “protect myself” mode.

Let me start by saying I rarely set out to anger someone or cause drama with supervisors. I honestly believe that most people are hard-working individuals who are trying to perform well at their jobs. Sure, every now and then a person slacks off. I’m even guilty of that in my own life.

I’m medically complicated. It’s that simple. The medical community I have been interacting with is in way over their heads. Three weeks or so ago, there was a decision made that I was a “difficult” patient. You can interpret “difficult” however you desire. But, my main doctor flat-out said that I complain too much and am using up too many resources as they attempt to resolve my complaints. I found out about this decision two weeks ago…during a medical emergency when the ER doctor walked into my room and asked me which hospital I wanted to be transferred to because there was a “Do Not Admit” note on my record at that facility. Did I mention this facility is considered to be a major medical center?

If you’ve been following my blog since August, you’ve already read some of my writings about the medical community. I’ve had great interactions with a fairly significant group of people. People I could probably be friends with if it weren’t for the situation. Most medical people seem to be more or less normal and probably live “normal” lives outside of work. There just seems to be two forces at work in the medical community, neither of which bodes well for consumers.

The first is organizational inertia. This happens when the processes just stop being functional. It’s like when I saw a specialist two weeks ago who prescribed a certain medication. I went to have the prescription filled at a retail pharmacy only to discover my primary doctor had to approve it. So I went to pharmacy #2 which just happens to be a military pharmacy, handed over the prescription and walked out the door 30 minutes later. No questions, no authorizations. I can’t figure out why the process exists. Organizational inertia also occurs when people start pointing fingers at each other and acting on rumors. Had the medical community I am involved with acted reasonably along the way, there probably wouldn’t have been a panic moment when my primary doctor realized I had not been told that I was being dismissed as a patient.

The second force is what I like to call “fiefdoms.” Fiefdoms happen when a person decides they hold all the cards and attempt to micromanage situations. They stop communicating with other people who should be involved in decisions and act solely to wield imaginary power. You can find fiefdoms in every possible industry, but in the medical field fiefdoms can be deadly. Imagine a doctor who thinks they are the expert on a medical condition and decides to ignore other opinions from their peers. Or a doctor who no longer listens to a patient because the doctor has decided what is wrong with the patient and refuses to entertain any other diagnosis. Now you get the picture of how this is a problem for patients. I’m not saying that a cold isn’t a cold. But, if it lasts for 10 weeks, perhaps a bit more investigating should be conducted.

So, to all the people who I’ve angered, stepped on or walked over in the last two weeks…I’m not even going to apologize. You can blame lack of resources, being bound by policy, overworked, underpaid or whatever. Don’t take it personally, but those things are not my problem. YOU are my problem because you refuse to see the impact your decisions have on ME. And when your feathers get ruffled and your supervisor starts looking closer at your actions, you have no one to blame but yourself. Don’t even try to blame me for being “difficult.” If you see something is not working, try to change it. Don’t succumb to inertia. Don’t cut yourself out of the loop and think there will be no consequences. Take responsibility for improvement. Change can be painful, but not changing is really a luxury none of us can afford.

Stage 2

Posted on by
Reply

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.

Cha-Ching!

Posted on by
Reply

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.

Teach Them When They Are Young

Posted on by
Reply

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.

Related articles

Me and My Dog

Posted on by
Reply

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/

 

Related articles

Remembrance Day

Posted on by
Reply

In Flanders Field

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie,
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

John McCrae

Morality of Medicine

Posted on by
Reply

Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.~ Harvey Fierstein

I think this quote is supposed to be motivational. Something about not letting others choose your destiny. About making your life about you. I’m not sure if Mr. Fierstein would approve of my selection for this piece, but if you put things in the public eye, you have to expect that it may be used differently than intended.

For me, this quote is another way of stating my currently rallying cry. I am a person, not a policy. Now I have been diagnosed with a rare disease, that cry becomes even more important. I have no desire to become a victim of my disease. In order to prevent that, I must now convince the powers that be that my life is worth saving.

It’s hard when doctors and “professionals” have so much control over my life. I know for a fact that none of them have taken even one step in my shoes. When the numbers say that 1 in 50,000 people across the globe have the same disease as I do, the odds that even one of my doctors has experience with what is now my life is miniscule. Throw in a few other more common ailments and the “professionals” really have no idea.

I don’t fault them for not possessing the knowledge to care for me. I do begrudge them their smug righteousness that they know what is best for me. Their desire to “do what’s best” for me without regard for how I feel is beyond aggravating. I greatly dislike the imposition of their morals on my life. All because they went to medical school.

Right now, I’m having difficulty with the way personal beliefs are infused in medical care. No, I don’t want a robot who only follows the rules. I want a compassionate person who respects my beliefs while providing my medical care. Who understands that I am the one who will live with decisions. While they may experience fleeting feelings such as success or failure, I must get up each day with the knowledge that a decision helped or hurt me. I want a doctor who recognizes that their job is to provide me with information and options and then accept my decision.

I know that’s too much to ask for. Government is so embedded in healthcare that we no longer have a say in our treatment. What pieces government hasn’t touched, morality has. Between the two, finding an individual who isn’t influenced by either is a lost cause. My decisions are no longer relevant nor considered. I’m a layperson who is theoretically incapable of providing input in medical decisions. I feel helpless.

But I refuse to become a victim of this system. I will advocate, or bully if needed, to get the medical care I need under my terms. I won’t be held hostage by other people’s ideas about the sacredness of life, of who gets to live under what circumstances. There is no “que sera” ending. It’s time for everyone to stand up and loudly declare that they are people, not policies.

Related articles