What is right?

My heart beats too fast and my hands shake when I think back remembering all the hospital admissions, the doctors, the pills, God… the pills!  As I write, my gut feels like it’s being ripped apart.  What if I made a mistake?

What if I made such a huge mistake that my only beloved son shall never forgive me?  And if he does forgive me, has my mistake(s) ruined some of his life already?  Has it already carved out part of who he is?

I just don’t know what is right.  I don’t know what to do.

Join a group?  There’s pretty much only one to choose from, which is through NAMI.

“Forget his liver,” I remember the young psychiatrist telling me.  Was she suggesting that I’m neglecting my son by not neglecting his liver, I wondered.  Sometimes psychiatrists think in strange ways.

“We can treat liver disease, diabetes and Tardive Dyskenesia,” the young psychiatrist said, “but we can’t treat schizophrenia without antipsychotics.”

That part about treating liver disease, well, I don’t think so.

My son’s liver panel always changes when he takes the type of medications recommended by psychiatrists.  His family physician told him, once in front of me, “never take antipsychotics again.”  He told us that they would damage his liver.  

In response, my son’s ACT team social worker and a psychiatric intern at the hospital told me that we should get a new family doctor.

“You must go against your gut,” I’ve been told by professionals in the psychiatric community.  “You must abandon everything you understand as a mother in making decisions to advocate for treatment,” a well-respected social worker once said to me. 

“Treatment,” ultimately can mean forced injections.   The social worker added that if she was a parent in my shoes, that she truly didn’t know what she would do.

“We’ll commit him for not taking medicine and keep him there until he gets so tired of it he will do anything to get out, even accept regular injections of anti-psychotics.  We’ve had to do this many times with patients like your son — who are consistently non-compliant in taking their meds,” his psychiatrist has suggested.

“He wouldn’t have rehabilitation there,” I told the psychiatrist after she threatened to send him there if he, “made one wrong move.”  My son is not a criminal.  He gets sad and lonely and out of sorts.  He isn’t out breaking the law. 

The doctor had a bad attitude and let her personal feelings get too involved.  She was angry because the day before my son had gotten out of a car in town, instead of going to his apartment, while riding with one of the team’s social workers.  He’s an adult and can get out if he wants to whether anyone likes it or not.

“The only thing he would be able to do up there since the psychiatric rehabilitation unit is full would be sit in their community room all day, watching television with patients who are much worse than he is,” I told her.  She reminded me again that this was an effective technique to get some patients to decide to take medication.

I feel like I’ve had to give my son over to the enemy.  I feel like I agreed to join them too — but never with my whole heart or without the ongoing feeling that there must be a better way to do things than the way our modern-day psychiatry does them.

I stopped going to the support groups because there is a collective attitude that supports denying another person’s human and civil rights.

I once told my son’s psychiatrist about research suggesting that people with diagnoses, such as schizophrenia, can recover.  She hadn’t heard about the studies nor had she ever read anything about treating schizophrenia in ways outside of antipsychotic medication.   Personally, I find it disturbing that she’s been a psychiatrist for more than twenty years, yet hasn’t taken time to read about other forms of treatment. 

We need an alternative.  My son and I, and possibly many other families, need people to join an exploration in healthy ways to treat “mental illness” and we need to start a conversation about recovery.

“What causes schizophrenia?” someone asked a famous psychiatrist who was speaking at a meeting I attended.

“Nothing,” the doctor replied.  “Nothing and everything causes it.”

I don’t have the answers.  I do believe that if we had places where we can find what a former professor of mine called, “The Three Ms’,” that healing could happen.  “Meaning, Mastery, and Membership,” he called them.  “People will go crazy without these things,” he said to our class one day.


Thank you for visiting Dogkisses’s blog.

Fibromyalgia misunderstood.

my magic bike

“He said you are very sweet,” the physical therapist said during my assessment.  I missed some of her words, due to a language barrier, but I heard the last part of the sentence when she said, “but he said you have not shown much improvement.”

I felt insulted.  Waves of emotions swelled up inside of me.  I’m sure she did not intend to insult me but I felt it anyway.  I had improved! Wasn’t that in my records I wondered.

I’ve had treatment for fibromyalgia pain there twice.  The first time I went to the warm therapy pool for a couple of months and they are right, I did not “improve,” at least not in the way my insurance company wanted me too, which I guess meant that I was cured.  I did have a great couple of months but insurance companies do not count this as improvement.

The second time I went there for fibromyalgia pain was about six months ago. My therapist and I decided together to do dry-land therapy instead of aqua-therapy, even if it meant me tolerating a bit more pain for a while.

I began to see a pretty big difference in my level of pain around the fourth week of doing the exercises.  My therapist is great, especially because he is well read and current in his knowledge of fibromyalgia.  He does not believe in causing pain.  I like that.

As my pain level went down my mood went up.  I really liked that!  Suffering from depression all the time is depressing.  I began to feel hopeful, feeling like I had some control, like there was something I could do to make things better.

Deciding I was ready to do my exercises at home my therapist gave me pictures and the long rubber bands to take with me.  I did well for several weeks.  I did my exercises, got in time on my magic bicycle and of course walking my dogs.  I could see muscles forming on my somewhat stringy arms and legs.  I was getting stronger.

Then I had a setback in life.  A really hard setback.  One that caused me so much grief I stopped doing my exercises.  It didn’t take long before my pain level was rising and my muscles were disappearing on me once again.

But what about the months I did so much better I was thinking while I was in the physical therapy assessment the other day.  What about the fact that for a while, I did improve, which means that I can improve?

After talking with her a couple more minutes I realized she didn’t know why I was there, which was because I hurt my arm and shoulder when I fell off my magic bike on Halloween.  She thought I was there because of fibromyalgia, again.

I explained this to her but she asked me three times if the pain was from the bike fall and not fibromyalgia.  I wondered about that.  I thought me telling her one time, along with the fact that she had a referral from my family doctor as to why I was there ought to be enough.  Did she think I was making up the accident? I pulled up my sleeve so she could see the gash in my elbow, which apparently convinced her.

The other therapist had never sent me out of there in pain.  This woman did and I hurt for two straight days.  I felt like she did not believe I was in the amount of pain I was in.

Presently, I can only lift my arm halfway up from my side.  Doc says this is from the, “tendon adventure,” I went on.

Many things she asked me to do hurt.  My family doctor had examined me and discovered gently without causing me pain which tendon and ligament he believed to be the ones that went on the “adventure.”  Each time I said, “that hurts,” he stopped.  But the PT I saw would just look at me when I said that hurts as if she did not understand.

It was a frustrating experience.  I was upset when I got there because of the crazy guy I had a crazy relationship with.  She blamed my nervousness on fibromyalgia but I knew what was wrong with me.  It might make the fibromyalgia worse, in fact I’m sure being upset does, but it wasn’t fibromyalgia that had me so upset.

“You are nervous.  You can’t relax,” she kept saying as she held my arm in positions that were really hurting me.  Well, no shit!

Finally she said she would end the session with the machine that sends electrical stimulation to the nerves.  I’d had it on my neck and back before and never had been impressed but also never felt any pain so why not I thought.

That thing felt like knives stabbing in me!  I was surprised and so was she.  She also laughed just a little when my legs came up against my chest after she had turned it up a notch.  I however did not laugh!

I became more distressed.

I told her I wanted to have aqua-therapy again.  I knew my therapist would be in the pool.  I also asked her if she would consult with him.  I’d already decided I was not going to come back and have another session like that one.  She was nice and when she came back from talking to him she had papers for me to sign.  He had agreed with me on the no pain part and that the warm water exercises would be a better approach since I am in so much pain.

Thank God for the few good doctors.  Thank God for the few good medical professionals who study and keep up enough to know they cannot assume they fully understand fibromyalgia.  It is the doctors and other providers who realize this who are the best ones.

Medical professionals who think they understand and have all the answers regarding fibromyalgia, while the smartest scientists are still scratching their heads,  are the ones who I am leery of.

I didn’t like it when that physical therapist, even though she was nice, kept on blaming my upset that day and the pain in my arm on fibromyalgia.

“You have fibromyalgia,” she said, “so you cannot relax.”

I had a boyfriend who was a narcissist I thought to myself and that was why I couldn’t relax that day.   I had spoken to him only hours before!

She was also pulling my injured arms in ways that was causing pain, which was not causing me to feel relaxed.

I’ve had many things blamed on fibromyalgia that shouldn’t have been and had fibromyalgia used to explain other things that are not fibromyalgia.

It’s a crazy world sometimes!




A Man without a Heart

“Life is all about the Narcissist, and while they learn to “feign” or act emotions, they are essentially cut-off from their own authentic feelings, –They seek to dominate and control others as a primary way of navigating life.” 

Source: Narcissism as Prophecy, by Richard Boyd, Body Mind Psychotherapist, Energetics Institute, Perth, West Australia.

“I don’t have feelings for anyone, not you or anyone else,” he said immediately after I told him I was sad and having a hard time with my feelings.  “I’m thinking about ending my life,” he added.  “I have a 45 and I know how to use it.”

The man was lying about ending his life.  The reasons for his statement was to play more mind games with me.

“Can you imagine for one minute that maybe it’s the truth that I don’t have any feelings for anyone?”  he pleaded

I can now.

By all definitions, he fits the description of a person with severe Narcissistic Personality Disorder.  Eventually, he went as far as to claim having been diagnosed, but I knew that was a lie too.

Our relationship had been serious, at least to me it was.  He certainly took pride in his ability to convince me that the love he felt for me was the kind that last forever.  He proclaimed over and over that he wanted to spend the rest of his life with me.  He literally begged me every day for the best of six months to believe he was truly in love with me. 

I hadn’t believed him.  I continued suggesting that he was rather in a delayed mid-life crisis and was merely infatuated with me.  This only fueled his wish to convince me otherwise, plus I was wrong.  His intentions towards me and our relationship didn’t come close to the innocence of a temporary infatuation and there wasn’t any mid-life crisis going on.

I had trusted him as my insurance agent for over twenty years before he spotted me at a low ebb in my life, and took full advantage of that in every way possible.  I believe it was my longstanding trust in him that in large part, caused me to question my doubts and slowly abandon my screaming intuitive urge to get very far away from him.

Upon reflection, I can see how unfortunately perfect I was for him.

 

“Rosa la Rouge” was her name.

by Henri de Toulouse-Lautrec (French, 1864-1901)

A-Montrouge Rosa la Rouge

I gazed into the small framed print for a few minutes wondering if I should spend money on something I didn’t need.   I was after all, at the thrift shop and had already chosen several items  from the art room.

I almost put the picture back, but I looked at it again.  I wondered what had drawn me to it.  There wasn’t anything that especially stood out to justify the purchase, albeit a modest one, except that I really liked it.  I decided that was enough.

As I write, over a year later, I remain captured by the woman in the picture.  

At Montrouge (Rosa La Rouge), by Henri de Toulouse-Lautrec.

Sometimes I take the picture down to take a closer look.  I want to understand what I feel when I look at Rosa.  

She’s mysterious and I wonder what she’s thinking.  I wonder where she is and where she’s going.  I wonder if she’s happy or content.  I think she has something on her mind.  More than that, I think she has a difficult life.  I’m rather delighted that this image evokes so many questions!

My sister came to visit me one day and remarked about the picture.  “She looks just like you,” she said.  “Exactly.”

I hadn’t thought about it, but oddly, I wasn’t especially surprised.  Looking again I saw a resemblance, but not as much as my sister saw.   It’s rather a feeling than her physical features that I relate to.

Rosa la Rouge was a French washerwoman; a laundress, which wasn’t an easy life.  They had a reputation of also being prostitutes.  Having learned that Rosa was likely a French prostitute evoked more curiosity about what I feel when I look at her portrait.

My first impression of Rosa made me think of a woman living the life of a poor share cropper’s wife.  I saw a woman trapped in a life of obligation.

Perhaps it is a certain loneliness in her that I see.   An alienation from the world of nine-to-fivers; the regular people who get up at the same time and go to the same place every day.  Regular people with regular jobs and regular relationships.

I imagine being a prostitute would call one to abandon, at least temporarily, a part of herself.  

So, I wonder about Rosa la Rouge.  What is it about her that intrigues me?

Is something lost to her?  A part of herself that she waits to meet again.

Is something lost to me, I wonder, when I see my reflection in Rosa’s image.

 

Henri de Toulouse-Lautrec (French, 1864-1901).

“Toulouse-Lautrec was drawn to Montmartre, an area of Paris famous for its bohemian lifestyle and for being the haunt of artists, writers, and philosophers.”

source: http://en.wikipedia.org/wiki/Henri_de_Toulouse-Lautrec

“Rosa la Rouge was a prostitute who appeared in many of Toulouse-Lautrec’s paintings.  Sadly, she is thought to be the source from which the artist contracted syphilis, a then-incurable disease which may have contributed to his early death at the age of 37.”

source: http://www.artcyclopedia.com/masterscans/l28.html

Thank you for visiting Dogkisses’s blog.  Feel free to leave a comment. 

 

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She neglected her apples

a curious girl, an old lady and an apple treeOf course I’d been told about stealing and the Ten Commandments.  I had also been specifically instructed, perhaps too many times for my rebellious nature, not to take, I mean steal, apples from the old lady’s yard.

“She’s stingy and mean,” my mother would say.  “She would probably come out and hit you with a stick or something.  There’s no telling what she would do if she catches you in that yard!”

The woman’s house was the last house on the road and beside of it was the dirt road that was beside the, “sewer.”  She lived on what we called, “Sewer road.”

About twenty or thirty feet from the curve, where Sewer road went straight ahead and our road took a sharp right, her house was on the corner.

You could smell the odor and most of the children in the neighborhood wouldn’t play on that corner of the block, which is what our neighborhood was; one block in a small rural town.  I guess the old woman was glad the smell kept us away, but I was curious and had a bicycle.

I’m not sure what it was that made me want to take those apples.  I didn’t understand why she wouldn’t come outside, be nice and give a person an apple.

I’d ride my bike around the block and every time I passed her house I secretly hoped to get a glance at her.  Sometimes I’d see her raking leaves and I would slow down, but she wouldn’t even look at the road.

There was another woman who had an apple tree in our neighborhood.  She was younger, but was still old in my young mind.  She was married and lived closer to the main road than to Sewer road.  Her apple tree was right there at her front door.

The lady’s house down by the sewer sat further back into the woods, leaving her unattended apple tree to a curious girl like me.

I would put on one of my older sisters’ bra.  I could stuff up to three of four apples in each cup.

My friends would dare me.  They couldn’t believe I was so brave and at thirteen, this was pretty cool I thought.  Most of them wouldn’t even walk that way, because of the smell, but they were also scared of her.  Plus, I had one of the few bicycles in the neighborhood.  I often rode alone.

I was taught that the best apples were the ones that had already fallen, but not yet eaten by worms.  I was also told that picking from the ground was simply the right thing to do.  My dad’s folks said that leaving the good ones on the ground, and that meant ones without worms or with only one or two wormholes, was being wasteful.

The old woman’s tree was quite abundant.  I don’t think she ever even used her apples!   Wasn’t she being wasteful?

My friends and I did enjoy eating the apples.  I think that matters.

My mom said that the other woman was stingy too, but that if I knocked on her door and asked politely, that she might give me an apple.  So I did.  I never wore out my welcome, which was at best tentative.

“Yes, I guess you can have one, but take it from the ground and only one,” she would say.  “I’m going to be making jam soon.”

Well I knew that I would never taste her jam.

For some reason, I liked better the apples from the tree down by the sewer.  Both trees produced red and crispy apples.  I guess hers were better because I didn’t have to deal with her like I did with the other woman.  Neither of them were pleasant people.

We didn’t have much to do in the town I lived in.  My grandmother always said, “Idled hands are the Devil’s workshop.”  I guess she was right.

Much laughter occurred when my friends saw me returning, apples bobbing around on my flat chest.  Sometimes one in each pocket of my shorts.   I couldn’t see how that woman ever missed any of her neglected apples.

I guess I shouldn’t have taken, I mean stolen, those apples, but I did, and much fun was had.

Gotta have a bike!

Thanks for visiting Dogkisses’s blog!

Apple Trees via Wikimedia Commons

 

 

 

 

Love or Abuse?

c. 50

Image via Wikipedia

Ending an abusive relationship can be easier than dealing with the aftermath, which may include forgetting why you had to end it.

Abuse is abuse, but psychological abuse isn’t as easy to recognize as is a bruise or a cut to the flesh.

We’ve all heard the saying love hurts.  How much is it really supposed to hurt?  It shouldn’t hurt all the while you’re in a relationship –that’s for sure.

Love is an elusive subject.  I imagine love can have many meanings and different shapes but abuse is not love.

I loved a wonderful man, I thought.  I also loved the way I believed he loved me.

The man I loved was kind, compassionate, generous, funny, smart and told me every day he wanted to spend the rest of his life with me.

Unfortunately, I loved an illusion, an impostor.  I loved a character that was passionately and intelligently designed, especially for me.  I loved a man who I honestly believe has severe Narcissistic Personality Disorder.

The man I loved created a character for me, mostly through what I now realize were constant interrogations.  He would sit by my window with me in the mornings where I liked having coffee.  He asked me questions about my life twenty years earlier.  Over and over he asked the same questions.  He disguised his questioning as an interest in getting to know, “everything about me,” which he called love.

How he created the character is a long story.  It was continuously being created in every moment we spent together.

The first day we were sexually intimate he began asking me about fantasies.  Had I ever had this one or that one and if I said no, he would ask had I ever at least considered certain ones he had mentioned.   He also wanted to know about every relationship I’d ever had as if we were in our early twenties or even teenagers.  He was in his early sixties, almost twenty years my senior.

He wanted to know all about my childhood.  Basically, he wanted to know everything I liked, disliked, desired or had ever desired so that he could create my perfect mate. 

There are reasons good and intelligent people fall for abusive and pathological personalities.  We don’t fall in love with a cruel person.  It’s the opposite.  Sometimes cruel people seek kind people.  We fall for the kindness they pretend to have.  We fall for characteristics such as a great sense of humor, what looks like compassion, an acknowledgment, granted an ingenuine one, of our hard work in life and who doesn’t enjoy being charmed?

In my case, the man I loved was wonderful until the first time I expressed my personal feelings about something other than being grateful to have such a terrific man in my life.

He became a cruel, deceiving, lewd, sarcastic and possibly the most destructive, was that he became intensely revengeful.  The man felt rejected by me.  I would learn that this triggered what he called his, “childhood narcissistic injuries.”

He spent six months working harder than I could ever imagine a man trying, to gain my love, admiration and respect.   I finally fell for him, for sure, and this was the hardest part of ending the relationship.

When I finally told him that I trusted his love, I never again saw the man he had pretended to be.  It was as if the man I loved died and that’s exactly how it felt.

Instead of chocolate and roses, poetry books for lovers, and gifts he thought I would like, he began sending me emails clearly calculated in a way to leave me in the dark about what he was doing.  He moved to a new home and didn’t tell me where he lived. 

I don’t know how long he thought I would hang in there, and I can’t believe I was there in that relationship one day, but hindsight is everything.

I guess I was in shock. 

He continued being cruel to me, finally sending me emails offering me, “whatever my price,” to be one of his nude models.  I never knew he had nude models.  He described their bodies.  I was truly sickened.

I would eventually receive an email offering me money to be with him, if I could compartmentalize my feelings.  I blocked his emails after that day.

He’s rich and I’m poor.  He goes to church and I don’t.  And so… He called his financial offers a good deed in the name of charity and love.

This was not love.

There was pure malice in his offers.  He knew it would break my heart to hear him talk about his lust and sex with other women.  It was psychological abuse.  Telling me all about his new home and his wonderful new furniture, while never inviting me there was his way of hurting me.  And, it worked.

I discovered that everything he had told me all along had been lies.  His lies were complex, complicated and detailed.

The entire time he maintained that he knew what love was as if he were a master of the subject.  It was amazing.  He wrote demanding righteous long emails about what love and courtship meant.  I was so shocked that it literally silenced me, for a little while.

He maintained that he had been wronged.  My crime was that I wasn’t willing to be his devotee.

“It is your loyalty that I desire,” he wrote.  “The loyalty you have to your son and mother.”

I thought it was crazy at his age to say those things.  Plus, if he had been the man he had pretended, then he would have had my loyalty.  I concluded he hadn’t really wanted me at all, nor my loyalty because he had it and he trashed it.  The man wanted nothing more than a lifeless doll.

I was tricked, deceived, used, manipulated and conned.

Narcissists are great tricksters.  Anyone can fall prey to a severe malignant and passionate narcissist.

There were many red flags in the beginning that what he was showing was not love.

He couldn’t stop telling me how wonderful I was and how he adored everything about me.

If a man cannot talk about things besides how great you are, then something is probably not right.  Flattery is always nice, but when this is all a man ever does watch out!

When a man puts a woman on a pedal stool, constantly praising her, telling her how awesome and wonderful she is, she should beware.

Take heed when your new guy is all about constantly flattering you, gazing into your eyes– all the time, nearly drooling over whatever it is he is focusing on about you;  your intelligence, your compassion, your empathy, your unique abilities, your physical beauty, your one of a kind sexual ability to turn him on and on and on and on — this type of flattery might be a strong sign that something isn’t quite right.

I’m not talking about real love or the wonderful sensations of falling in love.  I’m not talking about the kind of love that grows out of mutual respect and sincerely getting to know another person. I’m talking about a person who is lying, pretending and putting on a show for you.  One day this will turn and you will hear just the opposite.

Narcissists play games.  Pathological destructive games that hurt and damage people.

He told me after our intimate relationship was destroyed that he had never known love.  He said he didn’t feel anything.  He said he had used me to feel emotions, mainly through having sex.  “You felt something so that’s what I liked about being with you,” he told me.

Gifts are not always an expression of love.  If you’re dealing with a narcissist who has money he will certainly use it to charm you and suck you into his world.  He may very well try to get you dependent or addicted to his money.

Gifts may also tell you a lot about him because when you’re dealing with someone who is like a young child in the sense that the world revolves around him, the gifts will always be what he likes or wants you to have so he can enjoy them with you.

Much of his behavior was a way to mimic being in love.

Narcissists are also control freaks.  The man pretended to be generous, always bringing gifts, always asking if I wanted to go shopping.  I don’t like to shop.  I declined many offers, but one time I needed some socks.  He acted like it tore him apart while I shopped for them.  Later, I needed eye glasses. 

 He was always around at the time.  I barely had time to myself because he was in his cunning manipulative stage.   So, he went with me to get the glasses.  I was surprised how he was always offering me money or things I didn’t want, but didn’t offer to help pay for something I needed. 

He bragged about all he had provided for his son and how sad it was that my son had not had the same.  No socks or glasses, but he offered to pay for me to have a face life.  He’d had several.

He was terribly threatened by my having a few normal friends and a family.  This is not love.

Loving a person means wanting the best for that person.  It means wanting them to thrive.

It may be true that love hurts, but this is different than the hurt that comes from abuse.

I had no reason to think this man was acting and lying, aside from my gut screaming out at me.  Most of us don’t think that way.  Most of us take people for who they say they are.  We can judge them by how they act around us and treat us, along with listening to how they speak of other people.

Malignant narcissists have a damaged character.  They portray a public image that has nothing to do with who they are, but this is for the public and it is not what people close to them see in private.

You may see on the outside a confident and outgoing person, seemingly quite concerned for the well-being of others, a social butterfly, a community leader, a leader in a church, a member of well-respected organizations, a giver to charity — but on the inside is an entirely different story.  There is a person without any substance and sadly, he knows it.

Any person can be a victim of narcissistic abuse.

Sometimes we do not know what is happening to us until we discover that there are actually words to describe exactly what we are experiencing.   Knowledge really is freedom.

If you are in a relationship where you feel confused, like every single thing that goes wrong is your fault and you begin to feel badly about yourself, like you just aren’t good enough, all the while you hear someone say how much he or she loves you, something is definitely wrong.

I hope those of us who have been hurt in a psychologically abusive relationship will heal.  I hope we will recognize signs of an abusive personality and walk the other way. 

I hope we will choose love and leave abuse.

Thank you for visiting Dogkisses’s blog.


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Community and disability

I’m Dogkisses and I’m mad!  Mad as in angry, more than a bit peeved, seething, and any other word that fits, besides insane, which I may be that too!

I’m mad that I simply don’t know what to do to help my son who has schizophrenia.   I’ve been working so hard for years and I’m tired!  I’m mad because all my ideas are hard to put into place unless he is on the same boat as I am and apparently, that is not the case, not at all.

Because he isn’t on the same boat as I am then when his illness gets worse, which at times it does, I must rely on psychiatrists.  It’s like eating beans and rice when you know good and well there are plenty other kinds of food, much tastier and much healthier right there for the eating, but you can’t get to them.

I’m mad about a lot of things and have been for a long time.  I don’t know which way to turn.  If I had money I’d get a dog sitter and go to some tropical island and consider things.  But alas, I do not,  so here I am, in my apartment wondering what the hell to do — besides write that is.

I’m  mad that this thing called fibromyalgia and maybe even worse, Chronic Fatigue Syndrome, along with a virus I have bringing with it weakness and  days of nausea, all just keep on keeping on!

It is hard to help my son or anyone, including my dogs when I’m too tired to think!  I simply hate it.

My grandmother told me when I was a little girl that certain words were  not good to use.  Like the word hate.  First of all, she said it was a sin to hate.   She also said it would make you sick and would not do anything to the object of your hatred.

I used to be a new-ager in the 1980’s.  Perhaps I would have given my fibromyalgia and chronic fatigue a mental hug and embraced the great teachings I gain each day as a result of having pain and being exhausted all the time.

Well, it is 2009 and I’m not hugging either damn one!

My grandmother told me not to swear either but I can’t get everything right.  I did once swear in front of her, but only once.  I don’t know what kind of soap she used but believe me it really really tasted bad! It kind of got stuck on my tongue and she stood and watched while I,  “washed my mouth out because I said a dirty word.”

I wish she was alive now so I could go talk to her.  I don’t know what in the world she would say though.  I imagine she would tell me to turn to God.  She would probably tell me that it was out of my hands, all of it, and give it all to God, specifically to Jesus Christ, since she was a Baptist.

I wonder what would she would think about modern psychiatrists!  My grandmother didn’t get angry like I do.  She did know what hard decisions were though.

I just found out recently that she had to seek commitment papers on my father more than once.  He was an alcoholic and would drink until he would get so sick he would be nearly dead.  He would drink, “rubbing alcohol,” when family members poured his beer or liquor down the drain in the kitchen sink, the latter of which as a young child, I blamed on the former.  I thought it much better to leave the liquor because I’d seen what happened when he drank the, “rubbing alcohol,” that was kept in the bathroom.

Back then the only place for him to go to detox was the state’s mental institution.  I also learned he escaped from there, which today is unheard of.  My mom told me that my grandmother helped in his escape.

They had it all planned.  My dad had his suitcase outside of the place, hidden behind some trees.  My grandmother told my mom they were just going to visit him.  My mom was the driver.  The next thing my mom knew after pulling into the parking lot my dad was in the back seat of the car saying, “Hurry up, let’s get out of here.”

So she had to commit him and then help him escape afterward.  Sounds about like what I do.  Escaping looks a lot different these days but basically that is what you do when you get “discharged.”   You have successfully and legally escaped.

I get pretty worked up about commitment papers and trying to save someone from a disease that is treated more like an alien and the patient like a hostage under lock and key.

I am way more than frustrated with what is offered to him as, “treatment,” and a great deal of the time, what is taken away from him.

I’m mad because The Literacy Council in the town he lives in just dumped him.  They have a Basic Skills Development Center, which offers many different educational services and programs.  They set my son up with a tutor only a couple of months ago.

Getting him interested in something enough that he will actually make a commitment is challenging, but he absolutely loved going to see this tutor each week.

He usually sleeps late yet every tutoring day he would call me early, knowing that I rise early to write, to make sure he knew the right time.  He usually walked there because he doesn’t have a car.

I’m too mad to write about it!  I should ask for a letter from them as to why they dumped him.

“He has a problem with memory,” one of the staff members said when she called to tell me they had decided, on their own, without consulting anyone about it, to immediately stop offering my son services.

He has a thought disorder, causing disorganized thinking and YES, HE HAS A PROBLEM WITH HIS MEMORY!  Duh!

Anyone ever heard of the working memory at this institution for education?  Somehow I doubt it.

Didn’t they totally go against The American’s with Disabilities Act?”

I’m mad because I don’t know this law up and down.  I should.

I believe this organization gets money from our government, along with other private sponsors, so why are they immune to dismissing a student due to his or her disability, which is exactly what they told me they did?

I asked two people, one being the executive director, if I was clear about why they stopped serving my son and went as far as to ask if there was something I did not know, some other reason besides his memory problem, that had brought about this decision and she said no.

So I’m mad!

I’m mad at the people who think without knowing that this town’s reputation is in some ways a fairy tale.  It is a place reputable for being a progressive town, with all kinds of different community services and of course the best of the best when it comes to any type of medical care because there are two of the best medical schools in the country here.

Much of it is true but when people who are in positions of power assume a service is available just because well, because they think it is — drives me nuts!

As I was pleading with the Literacy Council not to dump my son telling her how much he loved it, how it stimulated his mind, how it gave him something to think about and talk about, how he was always there and excited to learn — she said, “Well, I’m sure there is a service around here offering…” and I cut her off.

“No.  There is not,” I said firmly.  I had told them when he started receiving their services that I couldn’t believe I hadn’t known about these services before.  We’ve been here six long and hard years and finally, finally he got somebody who would sit with him for an hour and a half!!!

Finally someone was going to spend some time with him.   Finally someone would treat him like a human being instead of a person who what?  A person who you cannot expect to learn?  A person who made A’s and B’s in school, who is intelligent, but because of  a thought disorder, a thinking disorder causing disorganized thinking — hello! — because of this — I nor anyone else should expect him to learn?

Unless of course he takes a fat dose of a mind body altering chemical!  Then, he probably won’t learn, but at least his behavior will be socially acceptable and freaaaaking pleasing!!!

Well, now it is night, which beckons me to relax.

I could trash this post but I think not.  I will instead click Publish.




Fibromyalgia HURTS!

“How often do you wake up in pain,” my good nurse asked.

“Pretty much every day lately,” I told her.

Her question was the first thing that came to my mind today as I was waking up. 

I lied there for the first few minutes,  as my brain processed how much pain I was feeling.  I thought about my medication and how it was only steps away.

Having overslept, I was an hour late with my dose and when I woke up, there it was!  Severe Pain all over my body. 

It’s hard to know how much pain to accept, tolerate or live with, when you live in a certain amount of pain all the time.  It’s also hard to recognize when pain has worsened until it eases up and I think wow — I was hurting a lot!

I decided about three years ago to take medication for widespread ongoing pain.  

“Pain and Living,” is one of my posts in this blog, which was written about the time when I decided that enough was enough.  I could only tolerate so much pain.  I had met my limit.

I wanted a chance at living my life.  I began to notice a difference in the quality of my life right away after going on medication for pain.

I was doing well with the medication.  This means the level of pain I was experiencing was much lower and at times, managed well enough that I could do things I hadn’t been able to do in a long time.

Things were going pretty good and then came life.  Regular ordinary life.

For me, regular ordinary life includes intermittent crises.

Stress triggers fibromyalgia and fibromyalgia is stressful.

My most recent stress is that I took a hard fall from my magic bike.  

Within a ten-day span, I went from having a very sore elbow, shoulder and back, to waking up with severe back pain and finally feeling pain in every place in my body that has tissue.

Fibromyalgia covers a lot of ground.

Yesterday I was able to do some house chores.  Some days I wake up and realize I’m able.  I know I’m supposed to pace myself, but when I get these able days I try to catch up on things, especially dishes and bathroom chores.

Laundry is the hardest because of lifting clothes, out of the washer – into the dryer – out of the dryer – then folding them.  Standing in one spot is hard too, which makes cooking and doing dishes a painful and/or fatiguing experience.

My sweet dog, a great insect hunter, barely brushed against my femur bone when I lied down after my chores and it felt like I was kicked in an already bruised spot.  Fibromyalgia pain sometimes feels like my whole body is bruised.

My insect hunter, along with our other 4-legged relative, have been lying as close to my body as they can get over the past two weeks since I fell.  They’ve literally had me locked down on the sofa a couple of times.  The big one lying across my feet and the little one, only 45 pounds, likes to get anywhere she can and if that means on top of a leg or an arm, then that is where she gets.

Last night, after my day of chores, I woke up about 9pm on the sofa.  Both dogs around me.  My body was hurting all over.  Moving was a struggle.  I budged one of the dogs and she didn’t move.  They were sleeping good.

I had overdone it with the laundry for sure!  I’m not very good at giving in to rest.  I truly needed to have that as my top priority.

By the end of today I cried some.  I had walked the dogs.  Not as far as they needed to be walked, but it was nice and we got a little sunshine.  I let them smell where their little noses wanted to go.  Lots of people just walk their dogs, but I let mine stop and smell.  I once read where it’s good for a dog’s olfactory system to smell things every day.  That made sense to me and I like things that make sense.

Dogs have what the native Americans call good medicine.  Their medicine is loyalty.  They give.  This is what they do.  They give.  They are wonderful nurses!

Pain is stressful.  It is tiring.  Living with it all the time is depressing.  It just is.

“How often do you wake up in pain?”  My nurse’s question lingers in my mind.

How often is too often?


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