We are a whole not parts

It has been two weeks since I was so sick with IBSD. I have been so well in general that the episode completely blind-sided me. Now I am experiencing the hangover. Since these particular episodes always occur between 9 and 10 in the evening I get anxious each night around that time.

The irony is that this kind of episode only crops up, at the most, once a year. It will take weeks for it to fade from my mind and then I will be fine.

journey-to-wholeness

It is so amazing what we can do to ourselves. I am fine physically but my mind clings to the latest event. So what to do? I have increased my prayer and quiet time, continued my regular routine and let that event become a memory that will fade. Learning and using coping skills is such a critical piece to our health and wholeness. We must remember that we were created as whole beings….not separate parts. Everything that we do affects our entire being.

One of the problems with out medical systems today is that we are not see this way but as different parts managed by different physicians. Not only do they not see beyond their specialty but they seldom communicate with each other.

wholeness2

 

We must learn to be our own advocates. Even if a physician ignores or puts you down for your concerns and conclusions about your care remember who sees the end result. Don’t ever be afraid to speak your mind and if you have someone who can’t accept that change to someone else. Never let a caregiver dismiss you. Each of us is just a important as the person caring for us. Never forget it.

Stupid words

words can hurtThis is a re-blog of something I wrote a while ago. It came up recently and so I thought it needed to be said again.

 

People can say stupid things. It is amazing to me that they don’t really think about what they are saying. When I ran a grief support group I heard some goodies.

 

You can have another baby (to someone who just had a miscarriage)

God needed another angel in heaven ( to someone who lost a child)

 Your husband wouldn’t want you to be sad (to a new widow)

I’m sure things are better now (to someone whose wife died a few months ago)

God never gives us more than we can handle (to someone who lost two teenagers in an accident)

Everything will be alright (to someone diagnosed with a fatal illness)

Sometimes when we don’t know what to say we can fall into the trap of saying something stupid or offensive. We may not mean it that way but that is how it comes out. When people are going through tough times they don’t need to hear these kind of answers. They need to hear

Can I bring dinner by tomorrow?

I’m going to a movie tomorrow can I pick you up?

I am so sorry

I will call you soon (only if you really will)

Give a hug

Cry with them

Solid concrete help is what is needed. Only say what you mean. If you can help try to do something specific. Don’t just say “how can I help?” Instead ask if you can pick up children, run an errand, offer a day out. Each individual needs different things. You have to gauge what will help.

compassion-is-a-verbMost importantly offer compassion and love. Nothing is more needed. If you have suffered a similar loss you may understand better what they are going through but don’t assume it will be exactly the same. Just being there is critical. Don’t just say something…..do something!

 

My view

It’s Winter

dark-gloomy-day-on-a-uk-beach-m-s

 

outside the flag whips in the wind

bleak and grey the skies loom overhead

the tide in the river fights to retreat

but the wind pushes up waves to impede

 

my view causes me to shudder

as if the wind can slide into the room

and bring its chill within

cold, cold, its mood is bleak

 

cold, cold my mood in response

mirroring the withering view

waiting, the kind sun to return

and bring its joy to lift my soul

 

© Suzanne Boyd 2018

A group dictatorship?

This may not be a very popular thing to say but recently I have realized that we live in a dictatorship. It is no longer what it set out to be. When the people who govern the nation, even though elected, make laws that do not apply to them, raise their own salaries, have their own healthcare and retire with all the benefits they have been living under while in office then it is not a democracy or a democratic republic. It is a dictatorship by a group.

Dictatorship in this instance refers to an autocratic form of absolute rule by leadership unrestricted by laws, constitutions, or other social and political factors within the state. (I found this on the web with no attribution, sounds similar to what is happening.)

This is certainly not what the founders envisioned. They thought that representatives of the people would serve for a while and return home to their lives. There was no intention that they would live out their lives in government.

change now

Too bad it didn’t work out that way. The congress and senate have the reigns in their hands and there is no safeguard in the constitution to revoke the process. It doesn’t seem to be an issue for the Supreme Court, our third safeguard, but maybe it could be in some way. I am not a government expert but I have asked some who are if there is any way that the people can demand a national amendment by themselves. They have told me no. If this is so then the only recourse is revolution which none of us want.

I don’t see any way to dis-empower those running the show. And really, would you vote to take all these things away from yourself? The fox is definitely guarding the hen house.

The nation is so divided at this point I doubt that any consensus could be found and most people are too complacent to do anything. Somehow no matter party or any affiliation we must make some majors changes. This is an issue for us all.

We can no longer see ourselves as a “democratic republic” but an Empowered Group Dictatorship. What do we do now?

 

How do we price life saving drugs?

blindnessI recently heard about a child who suffers with Retinitis Pigementosa. This is a problem that will cause blindness. A drug company has developed a drug that actually cures the problem. The cost of the drug was the question. Below is a statement about the cost.

A US drugmaker offers to cure rare blindness for $850,000. Spark Therapeutics’ Luxturna will cost $850,000 for a one-time treatment. The gene therapy treats a rare, inherited retinal disease that can lead to blindness.Jan 3, 2018 https://www.cnbc.com/2018/01/03/spark-therapeutics-luxturna-gene-therapy-will-cost-about-850000.html

The child has received the drug. I am not sure if he received it as a test or if somehow it was paid for. Already his vision is improving. The news person was interviewing the person who I think is the owner/ceo?  He was asked how the company set the price on the drug. The answer was so outrageous that I was stunned to hear it.

“We set the drug cost based on the value of curing blindness.”

I have never heard such a thing. I have worked for years in the medical field and certainly realize that drug costs are outrageous…think about the controversy about insulin…but this is beyond amazing. I cannot believe that the head of a drug company would have the nerve to make that statement. Imagine if all drugs were priced accordingly.

Usually the drug companies explain their high prices by talking about the years spent in research and development. Overdone maybe, but a least reasonable idea. But to actually state on national TV that the drug is based on the value of a cure was incredible. Companies usually base the cost of a product on the cost of manufacture plus profit but that is all changing. Now we seem to be setting prices based on what the market will bear. This may be fine for TVs, computers etc. but this is a life saving drug. I hope the scientist who discovered this drug was paid well and feels good about his participation in this fiasco.

The news person didn’t even seem phased by that answer.

sense_of_morality

Where are we headed? The moral sense of this world has disappeared. Making a huge profit is more important that making life worth living. I don’t recognize the world anymore!

Labels

Last night while we were out to dinner I noticed a number of teens at another table. Every one of them had on something that touted a designer. Labels. Every shirt had a label on the outside. It was important for people to know that they could afford designer clothes.

designer-labels

Discreet is no longer a word. (In so many ways.) Now everyone wants you to know that they have something special. It is not just teens. Think about all the expensive purses that some women long for. Even some shoes have initials on the outside letting the public know that you can afford them. People sell knock-offs and they are bought by those longing to be able to afford them. It is lusting after prestige.

We didn’t end up that way of our own accord. When I was young you would never be caught wearing something with the label on the outside. It was considered gauche. Gradually more logos appeared on things, crocodiles and polo players. From there it was an easy jump to selling things that announced how expensive they were. Advertising helped to lure us into the idea.

Now almost everything has a label you can see. We want everyone to know the value. We do the same thing to people. We give them labels. Some are simple and based on appearance…thin, fat, old, young. These labels know nothing about the person. If asked to describe someone we would use them.

Other labels are not so easy…stupid, crazy, not right. These have to come from some further knowledge of a person. And yet, the person is not really known. It is a label used to put someone in their place. It is a label to make “us” feel better about ourselves. It is a label to create “us and them.” It is a wrong and biased label.

people-too-complicated-for-labels

Labels can be used for many reasons. Some carry little weight and others can be devastating. We really don’t know what is on the inside. That shirt with the designer label can be poorly made when you look at the inside. The plain shirt may be perfectly put together if you choose to look at more than the outside.

Be careful of labels. They do not show the whole story. Be willing to look past the label to what is inside.

 

 

We’ve always done it this way

done itYesterday I wrote about”status quo.” Today I have been thinking about it from a different perspective. The culture that most of us live in likes to maintain itself just as it is. In the US the congress and senate do not want to make changes. I know they realize that they are in a wonderful place and certainly don’t want to change. How I would love to make laws that I don’t have to follow, raise my own pay, decide on my own retirement and have health insurance that is better than anyone else in the country. This is a very negative sort of “status quo.” It is unfortunate that there is probably no way to change any of this short of revolution and that is not an acceptable option.

Lawmakers are not the only ones who like the “status quo.” There are many churches, synagogues, mosques etc. who also have a vested interest in no change. A religious facility is one place where your focus must be on what your faith requires of you and not on spending lots of money on buildings and taking care of yourself. For most faiths the emphasis is on others. It is important to put focus on the poor, the disenfranchised, the homeless and all those in any need. Just perpetuating yourself is not an option.

I understand where religion is concerned I am guilty of being a part of maintaining the “status quo.” It is so easy to slip into that mode. We convince ourselves that drawing people in requires beautiful buildings and that may be a factor. It is where the percentage of money goes that we miss.

There are, of course, many other institutions who maintain the “status quo” to the detriment of our culture but that may be another blog.

positive changeAll in all, just staying the way we “have always been” is not always the right path. Change can be positive even though hard.  Change is inevitable. Helping to make it good starts with us. Every change has a chain reaction. Do something and let’s make it good.