22 Nov

Pain in fibromyalgia

Posted by DOGKISSES in health, invisible illnesses. Tagged: , , , , , , , .

Grouse Feathers bring good medicine

A personal experience of living with persistent long-term pain

I’m aware of pain every moment.  A kind of pain that without medication is absolutely unbearable.  A kind of pain that is hard to describe.  It’s persistent, invasive and all-encompassing.  It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain.  Sometimes I feel like I’m on fire from the inside out.

Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs.   This kind of pain scares me.  Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.

I live with pain that the doctors say may very well continue the rest of my life.  I’m only forty-six.  I have severe fibromyalgia and Chronic Fatigue Syndrome.  I also have other conditions that cause pain, but in comparison are easily managed.

I’ve lived with severe pain every day for about seven years.  I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.

I wake up every morning to pain, usually a moderate level, other times severe.  I always have some level of pain.  Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.

Sometimes I wake up crying.  Other times it’s the first thing I do.  I’ve cried myself to sleep plenty of nights.  It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it.  I cry because pain intrudes upon every area of who I am and how I live my life.  Most of the time crying helps.  A good cry can be a positive experience.

Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away.  Hurting that bad wears me out physically, mentally and emotionally.  I can’t take muscle relaxers and narcotics don’t help spasms.  Spasms are completely debilitating.  They started a couple of years ago and each time they’ve been worse.  With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.

Sometimes I think about what doesn’t hurt.  My nose doesn’t usually hurt.

I don’t think I could live with the kind of pain I’ve experienced without medication.   I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore.  I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with.  I had sat up all night in my tent thinking about it.

I was with my two dogs on top of a beautiful mountain.  I thought of my son and my mother.  My family.  I cried and sat there until sunrise, experiencing and feeling the enormous pain.

Fortunately, when I returned home I went to a doctor who began treating my pain.  That was five years ago.

It may be that pain will drive you crazy after a while if you don’t have a way to treat it.

Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part.   I feel sure I’d go into shock and possibly have a heart-attack without pain medication.  That scares me.

For the most part I’m able to manage pain with medication.  I’m deeply grateful to have medication.  I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy.  A level three or four is well-managed pain.

As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER.  Sometimes I miss a dose and fall asleep.  That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.

I get scared of losing my doctor.  I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia.  They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”

I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects.  I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.

Several months ago stress increased in my life and so did the pain.  Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.

I also went on another camping trip that physically set me back.  I lifted logs to have a fire.  Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave.  I did plenty I shouldn’t have done.  I hadn’t been camping since that one trip almost five years ago.

Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled.   It didn’t work out too well.

As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication.  I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.

Pain is depressing.  Knowing that I might have to take pain medication for the rest of my life is scary.  I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications.   I wonder how many times in my life I will have to increase the dose of pain medication.  There are only so many times a person can do this in one lifetime.  It’s all scary.

Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible.  The same is true with medical fatigue.   People will question and some will outright attack your character.  Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.

Personally, it has been my blood relatives who have hurt me the most.  I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment.  They certainly don’t understand what Chronic Fatigue Syndrome entails.

I don’t know where the silver lining in the cloud is.  I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.

Pain is humbling.  It teaches that the human body is what it is –human.

Pain begs me to take better care of myself and to care more about myself.

I grew up hearing the saying, “What doesn’t kill you makes you stronger.”  I wonder.  I’m darn tired and worn out.  I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.

I’m not too good at finding the silver lining in a cloud of pain.

I’m better at finding ways to cope.  Little things that make me feel better like hanging out with my dogs.  I love to rub the silky coat my young dog has.  She’s the softest animal I’ve ever touched.  She’s my tender heart.

My other dog is really my son’s dog but lives with me.  He and I have always had a strong connection so we’re pretty close pals nowadays.  I feel like his grandma.  He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.

My dogs give me joy and really do comfort my heart when all else seems lost or out of control.  Dogs rule.  They never argue and certainly never are they mean, at least mine aren’t.  Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.

Intentionally experiencing gratitude helps me ease anxiety or depression.

I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too.  I think about things I’m grateful for because it actually does make a little difference in the way I feel.  Some days it makes a huge difference.

As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow.  The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.

Maybe one day I won’t have such severe pain.  Maybe one day I won’t have fibromyalgia.  Maybe I’ll discover new or different ways of treatment that works.  One can hope because anything is possible.  Well, most anything.

Image via “The Graphics Fairy” — “Feathers -Autumn Display”

18 Nov

Man of Action from IconDoIt

Posted by DOGKISSES in Uncategorized. Tagged: , , , .

“Man of Action,” from IconDoIt, the store, on Zazzle.

this man of action rocks!

http://www.zazzle.com/145551750210269085. (direct link)

I absoulutely LOVE this “Man of Action” pin/button so I purchased two at a very modest price from IconDoIt’s store on Zazzle.

I can’t wait to give them for Christmas presents.

Bloggers know how much other bloggers mean to us.  My friend Leslie, from her blog, IconDoIt, is a talented creative survivor!

Leslie has been an inspiration to me since I first discovered her blog.  I’m quite sure I would love her art even if I didn’t know what an awesome person she is.

Check out the “Man of Action” via the link above and click on image to visit IconDoIt, the blog.

IconDoIt also has some wonderful holiday cards.  My favorite so far is the “Sugar Plum Fairy.”

My first purchase was the “FenceSitter” poster and I gotta tell ya, it is fabulous!

With each purchase Zazzle offers coupons for your next purchase and a discount for you to offer a friend.

Enjoy!

PS  This is shared from my heart, with love and appreciation for Leslie and her amazingly strong will to live.  I do not benefit in any way financially for sharing this with you.

dogkisses

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13 Nov

You cry fibromyalgia

Posted by DOGKISSES in human relationships, invisible illnesses, narcissists. Tagged: , , , , , , , .

peace prevailed

Peace of Home

The car was parked unusually close to my apartment.  It was foggy and I didn’t recognize the passengers.  I had to take my dogs out.  I usually take both dogs, but I only took one this time.  Maybe I was subconsciously preparing for the fight or flight response.  I surely can’t respond with two big strong dogs pulling on me.

They were still sitting in the car when I came back to get my other dog.  I said hello and the young woman in the driver’s seat returned my greeting.  The subject of my neighbor quickly came up.   He’s been harassing me for two months.

I thought she was being nice but then she cursed.  I asked her to repeat herself.  She verbally insulted me.

I have a rebellious nature that doesn’t always serve me well.  I responded, but not by taking flight, which I should have done.  I told her what I thought of my neighbor and that’s when he got out of the car.

He had a strange hat on and didn’t look like himself.  She got out right after he did.  He was clearly more intoxicated than I’d ever seen him, which must have taken an incredible amount of alcohol.  He walked around the car towards me.  He began his attack with a vulgar one-man show.

I was stunned but not too surprised by my neighbor’s behavior.   It was a clear view of what I had felt during the times I had tried interacting with him.   There had been a constant current of contempt seeping from his pores and he reveled in it like the insects in the sticky sweet sap from the wounded oak tree in my yard this past summer.

Being around him each time had left me raw and open, as if like the oak, something had struck a part of my foundation.

I made brief eye contact with the young woman.  We had both stood silently while he acted out.

“Why don’t you try talking to him?” she asked me.

Her remark actually surprised me more than the neighbor’s behavior had.

“You see the kind of person he is?” I asked her.  Obviously she didn’t.

“He’s really a good guy,” she said.

I guess she’s an optimist.  Maybe she believes she has magic powers that will reveal this “good guy.”

His behavior over the past two months had led to eviction papers but he blamed me.

I guess I was being the optimist too because I thought if I asked him one more time to be quiet, especially in front of a woman he wanted to impress, that maybe he would listen.  I was wrong.

“Why don’t you just leave me alone?  I need sleep.  I have…’’  I was going to say fibromyalgia, but he interrupted and began an outlandish verbal bashing.

“Oh and what do you say?” he shouted gloriously.  “You say you have fii bro my algia!  And what does fii bro my algia mean!  That you hurrt!”  He drew out the words fibromyalgia and hurt with great scorn.

He shouted fibromyalgia several more times.  Amazingly he pronounced it correctly, but then he had told me several times about having been the smartest student in his high school English department.  I’d found this curious because he reminded me of it every time I mentioned my writing.  It seemed like he needed to always make it understood between us that he was smarter and better than me.

This is all much clearer to me now.  Now that it’s all over and I can hear myself think again.  For a while, all I heard every day and night was him.

He looked up at the sky continuing to shout out, “Oh I hurt! I hurt! I hurt!”

“Oh! Oh! Oh!” he kept on.  He started physically mocking a person in pain by holding his body in ways to act like he was hurting.  He included sexual innuendos while he was carrying on.  It was a crude and ugly scene.

I can’t say why I stood there witnessing this behavior as long as I did, although I think it only lasted a short time.  Responding to a sudden outburst of verbal abuse and being bullied like I was isn’t something I’m well practiced at doing.

“You’re a c**t,” he said.  There it was.  Hatred that I knew was there.  I’m not sure if this surprised me or not.  My memory of the event is like one moment in time.  I remember more how I felt afterward than I do about when it was happening.

He briefly paced around in a small circle, obviously spewing with anger.  He called me that name again.  His friend looked a little ashamed, but she didn’t interrupt him.

I wondered how could she be okay with what we both saw.  I failed to remember that she’s looking beyond his behavior at some fairy tale in the sky where he’s that, “good guy.”

“I work every day,” I said.  I knew nothing I could say would mean anything to him, drunk or sober, but I’d said it anyway.

“Oh yeah, and what do you do!  You cry the fibromyalgia blues!  You sit home on you’re a** and cry those fibromyalgia blues, and oh how it hurts.”  He tried to sing but was way too intoxicated.  “I hurt, I hurt, oh I hurt,” he shouted, still looking at the sky.  I don’t know why I so clearly remember him looking at the sky while he ranted and raged.

I’ve never cried any fibromyalgia blues to that guy.  I did cry twice around him while attempting a friendship, but my tears had nothing to do with fibromyalgia.  He was by far one of the rudest people I’ve ever been around and twice he insulted me in ways that caused me to eventually stop speaking to him.   The few times I visited him felt like I had entered his personal war zone.  Like he took a break from shooting arrows in his backyard and invited me over for some easy shots.

He continued with his drunken spew of contempt standing there in front of my porch.  “You sit and cry how you hurt so you can get a check!”  He emphasized the word check with a high note.  Then of course he mentioned tax dollars.

Some people who claim patriotism don’t seem interested in the big picture of what helps shape our country into a place of opportunity and freedom — for every citizen.

In America we can better our lives, all of us, not just the able-bodied working folks.  We can be anything we want to be.  We strive to make sure that every child receives an education.  We have social aid and many government programs to help needy children, and their families.   We also help our disabled and elderly citizens.   At least, those are American ideals.

People who don’t understand disability unless there is a wheelchair or a death-bed in sight can be cruel, like my neighbor.  Some people will automatically assume a person without these visible affirmations of a handicap or illness is a fraud.

I continued trying to defend myself, which was an odd experience.   I didn’t much care what this neighbor thinks of me.  The words coming out of my mouth were like dampened cries from another place.

“I paid taxes.” I said.  I knew it would only make him madder so again, the rebel in me most likely wasn’t serving my best interests, which is ultimately to have peace in my life.  Obviously this means walking away from certain people or situations.

“Yeah.  I’m sure they took a little out of your check,” he stammered.

“You are nothing,” he said.   He stomped out his cigarette on the ground.  “Nothing,” he repeated.

I remember this part clearly.  Finally, he began walking away.

“I’m not nothing,” I said quietly.  I almost cried but stopped myself.  I looked into the young woman’s eyes again wondering, I guess, what she thought of her friend.

“I know that,” she said.   She didn’t look pleased about her friend’s behavior, but she was looking for the sunny side of a burnt fried egg.

“You ain’t nothing,” he stopped to say once more before going inside his apartment.

“I’m better than you,” I said calmly, although that response surprised me.

“Ohhh yeah!  Oh you are sooo good aren’t you!”

“Yes.  I am.”  I said.  “You’ll be leaving soon,” I added.  I shut my door.

That wasn’t his last performance but he’s gone now.  It was a long two months.

The short-lived relationship I had with this person was an eye-opening experience for me.  I thought I’d be able to spot a narcissist anywhere and easily.

Spotting one and ducking one are different skills.

I don’t know how narcissistic my former neighbor is, but he sure had a mighty large dose of himself.  Arrogance and a sense of superiority over most of humanity were traits he proudly displayed.  I didn’t know what to think.  One day I asked him why he invited me over if he didn’t like anything I ever said and put me down all the time.  He said I took things wrong, adding that his friends were all fine with his ways.

I guess there are many reasons a person criticizes others, particularly when it is done with great passion.

“What you see is what you get,” I remember saying to my neighbor months ago.

I finally decided that people who spend a lot of time hiding think everyone else is doing it too, but that’s just a personal theory.

From now on, I’m going to follow Leslie’s turn on this phrase, “What I see is what you get.” which she talks about in a recent blog post on malignant narcissists.

I forgot to keep the light in the watchtower glowing.  I forgot that when people prove they are mean and rude to get away from them if I can, instead of trying to figure out if I imagined them being mean and rude.  I forgot again to listen to myself.  I keep doing that, but then forgetting does remind me to remember.

Thank you for visiting my blog.

This post represents several things to me personally, the best of which, I guess, is what it was like being bullied, although I didn’t write about the aftermath of that evening.  It was as hard or harder than standing there witnessing my neighbor’s abuse.

It’s also an extreme example of stigma and disbelief around invisible illness.  Although this person was intoxicated, I’ve had the stones thrown at me for looking fine and receiving disability benefits.

It’s about learning to walk away, right away, from people who behave destructively, especially when I am the target.  As with most of my posts, it seems to be about listening to myself, or not, depending on how you look at it.  I prefer to believe that I’ll eventually get wise(r?).

Also, my friend CJ, who has a great blog about living with fibromyalgia, has repeatedly encouraged me to keep on writing.  Write anything she said.  In that respect, this post speaks to my rather frequent unfortunate entanglements.

With all that said, I’m happy to have my personal space back, my peace of home and am rather looking forward to the rest of this beautiful season.

Peace



17 Oct

Refusing defeat

Posted by DOGKISSES in mental and emotional health, reflections. Tagged: , , , , , .

Sometimes life is hard, but we must keep on going

IMAGE CREDIT: LESLIE SIGAL JAVOREK

Have you ever had a day where your body should have given out but it didn’t?  A day when you were amazed that you could stand up, much less walk a mile or more, but you did it?   A day when your tasks ahead weighed more than the world yet you couldn’t quit? A day when by night fall you finally looked at your phone contacts, your friends or maybe family, but you realized that you had to go at it alone?

I couldn’t remember what time I had gotten up that morning.  But then I wasn’t sure if I had gone to bed the night before.  I had slept, but when and where I wondered.  On my sofa?  In my guest room?  It didn’t matter.  I had a million things on my mind at once.

Finding a parking space at the hospital right away was a good thing, even though it irritated me that I had to endure the enthusiastic folks we share our hospital parking lot with for certain events.  I wasn’t in any mood for celebrating.  Plus, anything had potential in irritating me.  I was keeping up with any good things and not having to walk half a mile to the elevator was one good thing.

I had stopped at the ATM on my way but was too tired to get out of my car.  Somehow walking from the parking deck to the hospital seemed easier than taking the time to get some cash to pay for Valet parking.  I was not thinking clearly.

I forgot the number of my parking space but it was too late to turn back.  I knew what level of the deck I was on.  That was good enough.  On to the other million-minus-one thoughts taking over my mind.

“I love the way you walk,” someone I once knew used to say to me.  “You walk strong and tall with confidence.”

Oddly, I remembered this as I was passing people while crossing the walking bridge.  I slowed down and took shorter steps.

I began thinking about how severely fatigued I was.  It was more than fatigue.  I kept spacing out.  Earlier that day when I was feeding the dogs I had already measured their food and put it in their bowls, yet I stood there, staring off into space with their full bowls on the counter.  Both dogs stood by me waiting and watching, obviously wondering what was up with their human.  Finally, our older dog, who has a deep bark and only speaks one time when he has something to say gave one strong,  “Rrruuuff!”

The sound brought me back to the moment.  I put their bowls on the floor.  I thanked my dog.  He had done his job.  The perfect therapy dog and he hasn’t even been trained.

Walking slowly across the bridge, the past 48 hours of stress rolled around in my mind.   I was hungry and tired, but I was still going.  I had a bag of clothes for my son on one shoulder and a leather purse on the other.  They felt like they weighed a ton, but they didn’t.

I told myself I didn’t need to walk strong and tall.  I didn’t need to be confident.  I decided to walk the way I felt.

There was a peaceful feeling in accepting the physical weakness.  I felt confidence in not hiding.

The cafe was at the entrance I chose, but time wasn’t on my side.  I continued on.  The hospital’s walkway to the elevator seemed more daunting than ever before.

Acutely aware of pain and fatigue, I started to walk how I felt.  Another person I know used to say, “You gotta walk through it man.  Whatever it is, you gotta walk through it.”

A hospital is a fine place to collapse I thought.  I might walk through it, but I wasn’t sure that I would make it to my destination.

Reaching the elevator I noticed some wonderful photographs on the wall.  I was captured for a moment and then I saw the coffee shop sign.  Slowly I moved on, carrying my bags and my body.  The pastries caught my eye.

“Can I help with you anything Mam?”

I heard something in her voice.  Was she responding to what I was feeling I wondered or was it the striking red streaks in my eyes?  I wasn’t indulging in my feelings or I would have fallen down in a puddle of tears.  I desperately wanted a friend.  If ever I needed a shoulder to lean on, this was one of those times.

“I’m going to look at your pastries,” I said to the woman in the coffee shop, but she looked concerned, which she was.

She walked around to my side of the counter bringing me a glass of water.   My eyes were so tired I couldn’t read the labels on the drinks.  I chose a plastic juice for my son and a bottled soda for myself.  I looked at the pastries, but I didn’t want anything.

“Do you want some real food or a snack?” the woman asked me.  “We have these egg and sausage croissants and…”  I forgot what else she offered.  Nothing sounded good.  I was trying to keep myself composed.  “What about peanut butter and jelly?” she continued.

“These are the best peanut butter and jelly sandwiches I’ve ever had,” she said.  “They have peanut butter on both sides and jelly in the middle.  I’m serious.  They’re the best.”

“Yes.  I like peanut butter.  I’ll take one of those,” I said.  My words were barely audible.  My voice shook.  My hands shook.  I slowly put my bags on the floor and paid the bill.  I was able to smile.

I began to feel a little better.  This stranger’s genuine concern warmed my spirit,  lifting some the weight of the world I feel on my soul.

I remembered the last time my son was in the hospital.  I had a shoulder to lean on that time.   He had driven to the hospital as soon as he could when I told him what was happening.  He waited with me in the emergency room lobby for several hours.  He bought me snacks.  He held my hand.  I felt strong having someone there for me, while I was there for my son.   Times like this was why I believed the man who came for me truly loved me.  I was wrong.

As I crossed a walking bridge on my way to the elevator, I saw my shadow.  Strangely, it gave me strength.  I remembered a part of who I am.  I remembered that I am strong.  I felt stronger alone with my shadow, than I had with a person who was only pretending to be my friend.

I decided to refuse to be defeated by the day and instead, embrace the desperate way I felt inside.

My visit with my son was not so great.  He didn’t feel like talking.  There were several people around.  Two women were sitting close by us.  One talked too much.  I wanted to talk to my son but he didn’t feel like it.  The other woman stared at me the entire time.  I felt like she was looking into my soul.  She told me her name.  I said hi and we shook hands.  She kept on staring at me.

“Is he your husband?” she finally asked me.

“No.  He’s my son,” I told her.

I used to feel complimented when people said I looked like my son’s sister, but now, I really only want to look like his mother.

“You look sad,” the young woman added.

“Yes,” I responded.  “I’m sad.”

 

Thank you for visiting Dogkisses’s blog.


 

10 Oct

My little drop of heaven

Posted by DOGKISSES in companion animals, dogs. Tagged: , , , , .

She sees everything, hears everything, and feels everything.  I can’t hide anything from her.  She feels what I feel.  I often wish she didn’t.  I don’t always want her to feel what I feel, but I can’t hide from her.

Her sensitive nature is part of what makes her so incredibly adorable and lovable.  Its part of what brings joy to children and any person whose heart has a place where tenderness can be felt.

She doesn’t ignore the moment.  She pays close attention.   She’s intensely affected by her environment.

I wouldn’t change a thing about her.  I love her just the way she is and I love the way she is.

I’ve tried to change in me the same traits I love so much about her.  Maybe, if I pay attention, she will teach me that being sensitive and showing feelings is an okay way to be.  In her, it’s a beautiful way to be.  She’s honest and refreshingly expressive.  Maybe, if I listen, she will teach me to embrace what is so.

Today she came to me when I called for her.  I’ve known her and loved her almost five years and she finally walked straight to me without turning around half way to rethink things.

She walked towards me with more confidence and without fear.  I saw a trust in her eyes that felt new.  I can’t believe she is still learning to trust, but she is.

Her trust is a gift.  I felt it when she gave it.

She doesn’t owe trust to any person.  I don’t know what happened to my girl in her seven months of living before I met her.  I don’t want to know.

I understand her cautiousness, even though I don’t know the details of her early life.  I understand her and she understands me.  Neither of us knows what happened to each other before we met.  We just know things happened.

She and I are a lot alike.

She took me outside twice today.   She took me where the early morning sun warmed my face.  A cool crisp air reminded me of the changing season.

She has a lot to teach me, if I listen.

She’s my little drop of heaven who walks on four legs.

she takes me into the morning light



4 Oct

A part of me remains the same

Posted by DOGKISSES in family, health, life. Tagged: , , , , , , .

watch cow.

Image by tobym via Flickr

A part of me will always be the same.

“That haircut makes you look more like your old self,” my mother remarked.  My oldest sister agreed in her rather pleasing and generally consistent neutral way.   “You know, back when…”  Mother smiled remembering the past.   She spoke briefly to how I used to look.

“Actually, that was the young me,” I said, “and this is the old me.”

We laughed.  I like it when my family and I laugh together.  Being able to have a sense of humor and fun was always a part of my family experience growing up, which I believe was our saving grace and most likely still is.

Mother and I had gone out to eat and shopped at a thrift store for nearly two hours before we got to my sister’s house.  I couldn’t believe I was able to walk around a store that long.  I did start to hurt but took my medication and felt fine.  My mother was hurting by that time too, only she didn’t have medication.  She endures chronic pain.

Sometimes I feel a little guilty for having better medical care and treatment than my family members have, but then I feel a little guilty over just about everything in life.

Mother bought me little things at the large thrift store, which she clearly enjoyed.  I found a stunning little wood carving of a bird, along with a couple of unique handmade Halloween crafts.  I spent most of my time browsing the coats.  I found my son a lined corduroy one in perfect condition and myself a truly classic thrift shop gem.

unintentional designs and natural flaws

“Well.” my mother remarked with a mild reservation.

She looked at the coat I’d found with her eyebrows raised but a smile on her face adding,  “It’ll sure fit in where you live,” which is true.

My favorite part is the soft furry lining, but I do like clothes with a little creative touch or character.  My family knows this about me.

It’s good to have people who know little things about you.

Arriving at my mother’s house earlier that morning had been pleasant.  The windows were open letting in a breeze too cool for my arms, but it was quite refreshing and in more ways than one.  Before she moved to the country she seemed afraid of the outdoors.  She’s always said she didn’t want her windows open because,  “somebody could just stick their arm inside, reach in and grab her.”

Her backyard is a cow and horse pasture.  The absence of city noise and lights, with a view of rolling hills evokes in me a fantasy of sitting outside, watching cows, (which is good for the soul) and writing a novel.  watching cows is good for the soul

Mother was playing soothing, albeit country, music when I arrived.  I love it when I hear my mom listen to music.

I absolutely love it.

It reminds me of, “back when.”

The day was perfect for a family visit.  The recent rains made way for a clear blue sky and interesting sounds.  The most surprising part of the day was that I didn’t get fatigued.  The best part was sitting on my sister’s deck and visiting.  No rush, no running around, just sitting and talking.  It was a time I hope to recall in the future.

“Did you hear that woodpecker?” my sister asked.

I did but I don’t think my mother heard it.  She worked in a cotton mill for many years and says the noise from those large weaving machines impaired her hearing.  “I didn’t like wearing those ear plugs,” she’ll say.  “They just didn’t feel good.”  I imagine they didn’t look good either and my mother did enjoy looking her best, even while weaving.

I wondered about my sister when she pointed out the sound of that woodpecker.  Not that she doesn’t appreciate her yard and those trees.  I know she does, but she’s usually busy either cleaning her house or getting ready to go some place.   Sadly, she’s in pain and has been for longer than I think I could tolerate without treatment.    She’s preparing for a hip-replacement in a few weeks.

I’ve talked to her over the phone but seeing her slowly limping around struck me differently. Her lameness broke my heart.

Was it pain, I wondered, that beckoned her to listen to the peace of nature in the first days of the falling leaves.

My sister has worked every working day since she was 15 and got her working permit.  She and my other sister, who are only eleven months apart, used to earn money cleaning people’s houses when they were adolescents.

“You’re too young,” I was told whenever I asked to help.  That never changed, which one of my sisters seemed to resent, but this was not something I could help.

One time after pleading with my mother I was allowed to go with my sisters to clean a house.  I was around ten years old.  I stood between them while they washed dishes.  I knew they were basically tolerating me.   I got to pass the dishes from one who was washing and the other who was rinsing.

I dropped a fork and it stabbed my right toe.  I remember them saying not to tell the owners of the house and talking about the blood stains.  I never got to help them again.

I didn’t learn the same things my sisters did.  One learned how to sew.  The other learned how to run a riding lawn mower and finally a tractor.   I learned to ride a ten-speed bicycle.

The day was perfect for a family visit.  The leaves are falling.  The season is changing.  Our differences and shadows from the past didn’t matter.

A part of me remains the same.




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27 Sep

From the patient in pain

Posted by DOGKISSES in fibromyalgia, health. Tagged: , , , , , , .

do butterflies always sleep alone...

“I really came to talk about my pain,” I told my family doctor about a week ago.  Now I wish I hadn’t said it.

I had put off having this conversation for the past few months.  I’ve been on the same dosage of one pain medication for three years and I don’t want that to change.

After two serious injuries from accidents in October, 2009 and January, 2010, I had to use extra medication, which is a shorter acting drug.  I was able to stop taking it after a while, but the injuries exacerbated fibromyalgia pain and as a result, I had to start taking it again for breakthrough pain.

My doctor said about six months ago that it was great that I’ve maintained well on the initial dosage of the regular pain medication.  I’ve always felt good about this too, and wasn’t too concerned about needing breakthrough medication.  I thought that I was having a flare up and things would calm back down.

A few months ago my pain levels began to increase more regularly, and with that along came anxiety, in part due to my resistance to taking the medication he had given me for times when the pain breaks through my normal threshold.

I was breaking the pills in half afraid to take the prescribed amount, which is up to two pills per day, but this is only for days when the pain has increased.  I think I may have dragged out the pain by not taking enough to knock the pain out sooner.  I should have just given in and said okay, today is a painful day.  I’ll take the medication even if I have to rest in bed.  Instead, I’ve taken a little of it and kept on going.

Of course last week in my doctor’s office I failed to communicate this.

Since having gone on an analgesic medication for fibromyalgia pain, I’ve felt a particular bond with the doctor who treats me.

He became our family doctor in 2003 when my son and I moved to the area.  We both like this doctor very much.   He has a wonderful bedside manner.

I left his practice for a while, but when Tramadol stopped working and the doctor I was seeing had communicated that she was not happy about starting me on a narcotic pain reliever, I went back to my original doctor’s practice.

I told him he had to help me because I simply couldn’t live in the pain I was experiencing, which was the truth.

I’ve seen him ever since.  He isn’t scared of treating my pain, although he did ask me to go to see a specialist, the Rheumatologist who had diagnosed me with, “Classic Fibromyalgia,” but had moved almost four hours away from where I live.   I eventually made it for a visit to that doctor.

I told the doctor why I had come to see him, which was that my family doctor wanted his advice on treating my pain.  He said tell your doctor that he is doing the right thing to treat your pain.  So I did.

Now, three years later, I’ve gone into my doctor’s office and spoken of my pain.

“I think we need an expert,” he said and I’ve been upset ever since.

I don’t want an expert.  I’m sick of experts.  I don’t know why I feel this way.  I’d like to see an expert for a few problems I have, but not one for pain.   For some reason, I’m repelled by the thought.  I’m both scared and angry.

“I don’t want to go to a pain clinic,” I told him. ” I’ve heard horror stories about how they treat their patients.”

“This is a good group of people,” he said.  I could tell by the way he spoke of them that he holds them in high regard.  “They come here occasionally and give talks.”

I imagined these talks.  I imagined the pharmaceutical catering service having brought in everything you could dream of for lunch all in one sitting.  Am I cynical?  I never wanted to be.

“I’m not sending you away,” he tried to ease my anxiety, which didn’t work.  It’s the fear that gives me anxiety.  Fear of not being believed.

“I’m scared they will tell you not to give me medication,” I told my doctor.

I’ve been disbelieved, judged, accused, and criticized both inside and outside the medical community since I began having chronic severe pain, but never from this doctor who I presently see.  Having a doctor who believes me and understands that I can’t take Lyrica, which is commonly used for fibromyalgia pain these days, nor can I tolerate antidepressants, also used for pain, has been and continues to mean a great deal to me.

I also very much dislike it when a doctor thinks depression is the cause of any pain I may have.  I don’t like it when tears confirm this.  I cry easily and often my tears in front of a doctor are a mere release of fatigue from my having showered, dressed, driven and walked into his or her office.

I’ve walked out of two different specialist’s offices for other illnesses extremely depressed from the doctors blaming the conditions I was there to get help with on depression, while it was the condition causing me to get depressed.   Ironically, both doctors were not practitioners but teaching fellows.  Personally, I think they were better at teaching medicine than at practicing.

I knew when I went back to the doctor I see now, which was over three years ago, that he would believe me when I said I was in pain, which is why I went back.  Why would I want to go anywhere else after my experiences of having seen doctors straight out of a horror movie?

I don’t want to take a chance on having someone tell me my pain isn’t real, or that I can meditate it away, or who wants to try some novel drug on me, and the worst part, take me on a trip to my life story.  Been there and done that.

I don’t feel like telling strangers my story anymore, especially if it results in me being told that the pain I live with is either psychosomatic or a result of depression.

I once had parasites that came from a river where I unwisely washed my dishes in during a long camping trip.  I lost twenty pounds the first month.  I was in constant severe pain and very sick.  Every time I ate I had to find someone to take me to the emergency room.  I had a quack for a family doctor.  He liked listening to my heart-rate more than anything because he acted like he was going to faint at the site of breasts, even minute ones.

“Many women your age with your history have lower abdominal issues,” he would say as I was lying on one of his office beds screaming, bent over in the most severe pain I’d ever experienced.  He would give me a Valium and say, “You’re not dying.”  He’d walk away telling me I could lie there as long as I needed to.

I wish I had sued his pants off.  Finally, after about six weeks, a homeopathic doctor suggested I had Giardia infection.  I remembered the many horses having crossed the river by my campsite.

She said she could give me charcoal pills, but that I would be sick for a long time.  I had already been sick a long time.  I told somebody and they said you need a real doctor.  The next day a real doctor gave me Flagyl.  Miracle pills that saved my life.  In two days I was feeling better.

I got a bill from the quack for almost five-hundred dollars.  Well, of course I used what writing skills I had and told him exactly what he could do with his bill.  I never heard from him again.

I’ve had my bad days with doctors.

I wish I hadn’t said anything about pain to my doctor.  I’m supposed to see this expert tomorrow.  I already don’t like her.   I feel angry towards a doctor I’ve never met because of the horror doctors I’ve met in the past.  I’m fairly certain I’m going to call and cancel.  It’s my pain.   It’s my life.  It’s my choice.  I hope.

I’m irritated with my doctor for not stopping to hear me out, but maybe he did.  Maybe he heard what I didn’t.  I’m confused.  Did I ask for what I got?

He did stop before sending the email asking if I wanted to go ahead with the appointment.

I obviously said yes when I wanted to say no because now I have myself an appointment.  The pain doctor’s clinic has called three or four times, which I was ignoring but then accidentally answered — and confirmed! That made me mad at myself.  I did tell the person who called that I might have to cancel.  They sent me a package in the mail.  All a waste of time, money and paper I thought.

Why couldn’t my doctor just listen?  Why couldn’t I stand my ground?

“I went camping,” I had told him.   “I did a lot that I shouldn’t have done.  I know this added to the increased pain and I’m under more stress,” I said, realizing the part about the stress may not seem like anything new to him.

He did hear me.  When I said I lifted heavy logs of locust wood for three days and nights he turned from his computer, where he was typing that darn referral, and with somewhat of a surprised look he remarked, “You did?”

I reminded him that I didn’t have the breakthrough medication I needed during that trip and that I had gone anyway.

“Are you asking for more or less of one of your medications?” he responded to those remarks.

“Neither,” I said, which was true.  I was near tears,  but I stopped myself from crying.  His referral is exactly the reason I haven’t told him my pain has increased.

“I”m just trying to tell you why my pain may have increased.”

I don’t think he responded to that so I said again, “I kind of don’t want to go.”

“It isn’t punitive,” he said.  “I’d like to know if they have any ideas.  I really like them,” he added.

He has always been a good doctor and I’ve trusted his referrals.  He’s actually pretty conservative in making them and sometimes I must ask for one if I feel like I need a specialist.  This time however, I honestly cannot say that I trust this referral.  I’m scared.  I’m scared of pain specialists.

I looked at the expert’s website.  She’s an anesthesiologist at a well-respected teaching hospital.  There is mention of fibromyalgia in her area of treatment, but it’s not her specialty.  The clinic offers acupuncture and biofeedback.  I feel sure they do not offer this to Medicare/Medicaid patients, which I am.

I’ve been to other speciality clinics.  Some of them are pretty fancy places.   My insurance will pay for a one-time consultation for certain health issues but I don’t get much out of this.  One visit and bye-bye.

The experts I’ve seen at these clinics have recommended acupuncture, which was a part of their services.  I’ve responded well to acupuncture in the past and very much wish I could have ongoing treatments, but it’s expensive and I can’t afford it.  I’ve received prescriptions for it from the doctors at these clinics, even though they know my insurance doesn’t cover it and I can’t afford it.

I don’t want another experience of walking into an upscale medical clinic, with inviting photographs on the walls of people receiving massage or acupuncture, along with brochures for your reading pleasure about these wonderful treatments, while I’m well aware that I will not be able to access these services.   I’d rather stay home.

I especially don’t want to see a pain specialist, who might interrupt the good care I already have from my family doctor, which is one thing in my life I’m especially grateful for.  I feel like going to see a pain expert is like trying to fix something that isn’t broken.   Maybe it needs tweaking a bit, but not reconfigured.

I’m scared, confused and kind of irritated for feeling this way.

24 Sep

butterflies and dogkisses

Posted by DOGKISSES in Nature. Tagged: , , , , .

butterfly drinking from wounded Oak

Butterfly where might you land

On top of the Zinnia

Or in the palm of my hand

butterfly and friends drink Oak sap

Will you come to the garden?

We planted just for you

Drinking sweet nectar

Dancing the way you do

butterfly drinking sap from wounded Oak

There are all your favorite flowers

We’ll watch you for hours

‘til the sun goes down

When you are not to be found

where do butterflies go at night...

These butterflies didn’t come for flowers.  They have come for the sap seeping from a wounded Oak in my yard.

red-spotted purple, I hope...

Wait, I'm an insect hunter!

Keeper of dogkisses


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