Posts Tagged ‘Chronic Fatigue Syndrome’

dogkisses for Roscoe

I’ve been trying to publish a post in this blog for several months or more, but after such a long time away from writing, the endeavor is challenging. 

An honorable mention of Ruthie Mae, a wonderful dog, who crossed the Rainbow Bridge in 2014 and now lives in my memories, feels like a good place to start.

Ruthie named this blog, “dogkisses,” with slight little kisses on my arm each time I reached for her bag of food.  She was forever a tender heart.  So sensitive.  So sweet.  Ruthie’s kisses felt like snowflakes melting on my skin.

Not long after Ruthie passed, my late friend, Laurie, a former fellow blogger who lived with chronic illness, also passed away. 

I was sad.  I also had to move.  Again.  Life has been hard. 

My writer’s voice seemed to have vanished for a while, but after settling into a new apartment, which meant that I could finally sleep, I gradually found myself making notes on random sheets of paper.

Also during my online absence, the bond I’ve always had with my blog and the blogging community as well, never abandoned my mind or heart, which I think is pretty cool. 

Aside from the logistics of moving and an extreme backlash of severe pain from fibromyalgia, during and after my son and I moved two apartments, twice, I became exhausted. Utterly exhausted.  

There is a lot I could say about the past two years and what led to my long absence, but that would take a while and more energy than I have today.

For now, I’d like to introduce you to my new and most special friend, Roscoe!  He’s a beautiful dog.  I don’t have many photos uploaded to this computer yet, but soon I’ll show you his beautiful hound-dog spots and multi-color coat. 

img_8452

No Words for this Face!

I’m pretty sure Roscoe is a mix of German Shorthaired Pointer and Bluetick Coonhound.  His face reminds me of a Husky.  His eyes are an unusual green.  He has wonderful long legs, enabling him to run fast and climb high too!  He’s a thin guy, but some of us just can’t catch a pound or two for long. 

As I write, Roscoe reminds me only of a hound dog.  Whining all the time 😉

Roscoe and I have had a truly amazing journey together since we met at a rural shelter in April, 2016.  I hope to soon tell you about our adventures and for various reasons, a few several misadventures as well.

With luck and determination, I shall return soon.  Fingers crossed.  Thanks for visiting dogkisses!

Cheers!

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purTY purTY purTY

Pretty red bird, he sings it every day!

Photo by Virginia Sanderson via Flickr

Every day for the past few weeks I’ve heard the Cardinal call,  “PurTY, PurTY,  PurTY.”  What a nice thing for a bird to say!

I’ve always especially loved Cardinals and the male is certainly an eye-catcher,  just as nature intended.

I wonder what the very handsome guy in the above image is thinking, but then I also wonder if birds can think.

I’m too tired to research this question in-depth, but I came across a wonderful article about a Parrot, Alex, who sadly died in 2007, but left with us interesting questions about animal intelligence that I find fascinating.

There may be more to a “birdbrain” than we thought.  The article about Alex is from 1999, but I imagine there remains, “a highly emotional debate about whether thought is solely the domain of humans, or whether it can exist in other animals.”

“Alex can think.  His actions are not just an instinctive response, –but rather a result of reasoning and choice.”  (Dr. Irene Pepperberg, A Thinking Bird or just another Birdbrain).

I’ve always wondered about humans being the most intelligent species and the older I get, the more I wonder.

Living with a chronic illness has a way of putting you in touch with being human.  Living with persistent pain and/or illness is humbling.  Strangely, this experience of being so damn human gives me a sense of connection with all living creatures.

I guess when I think of the pain and fatigue I live with I remember the ticks.  They are so small and relatively low on the food chain, but one bite from the wrong one at the wrong time can change your life, or worse.

There is a sense of oneness in the awareness that these little vectors can transmit disease and that a resulting illness can fall upon any person.  We are all alike in one way.  Blood runs through our veins and a beating heart keeps us alive.

I remember the day I found the baby deer tick on me.  It was in the afternoon and was a beautiful day outside.  I remember falling to the ground in weakness, while walking to my car.  Suddenly it felt like someone had grabbed my throat and was choking me.  My joints protruded for months.  For several weeks, I lost almost complete use of my hand and eventually my arm too.

I remember lying in bed looking out of the window thinking how I’m not any stronger than those ticks.  We are the same in one way you look at it.  We each have our place on this planet.

A few weeks ago, the deep joint pain like I had after the deer tick bite in 2003 reappeared.  This scared me.

I went to the doctor who tested me for autoimmune diseases.  I didn’t think to get tested for any of the tick-borne illnesses.  I’ve seen a few crawling on me this year, but none of them were attached.

“Positive,” one of my lab reports reads.  I received them in an email without an explanation from my doctor.  A lab report I can’t understand, but I do know the word positive.

I called the nurse,  “What am I positive for?” I asked her.

“Something arthritic,” she answered.

I know the test is for autoimmune diseases, but they have to do further testing to know which one.  It could be Lupus or RA and for all I know it could be Chronic Fatigue Syndrome or something else!

My doctor still hasn’t sent me a note, explained anything or asked for a follow-up.  Modern times I guess.

The referring nurse called to say the Rheumatologists can see me in August.  This is April.  Sigh…

We have many fine Rhuematologists here, but they won’t see me because I have insurance for poor people and doctors don’t like it because they don’t get paid as much for their services.  I also have Medicare, but because I have Medicaid, they won’t see me.  The only ones who will take my insurance are the teaching clinics at the hospitals, which is a lot better than going to the public health department like I had to when I lived in the mountains.  That was altogether horrible.

Still, it isn’t very cool that I have a positive test for an autoimmune disease, which was taken because of joint pain and a worsening of fatigue and not be able to know what exactly I tested positive for.  I would at least like advice or counseling, since knowing me, I probably wouldn’t use whatever medication they suggested.  I can’t take medication for arthritis.  They all make me sick.  I can’t take most medications without getting sick.  However, I’d still like to know where I stand and what my body is battling.

I’ve suspected Lupus before and so have a few doctors I’ve seen, but you have to test for this disease when it’s active for the results to show positive.

I’m very tired and life isn’t slowing down for me.  It’s hard to keep up my obligations, some of which are difficult when I’m feeling well.

I keep thinking things will get better.  They’ve been bad before and they got better.

A cabin in the mountains near the hot springs is what I fantasize about.  Taking my dogs, a few good novels and waking up for a month or so, only to walk over to sit in the natural springs and enjoy a Swedish massage afterwards.

For now, I take comfort in nature.  I listen when the birds sing.  I hear that Cardinal.  “PurTY, PurTY, PurTY.”  He is so nice!

Thank you for visiting Dogkisses’s blog.  Please feel free to leave your thoughts.  Emails are never published.

Forest Food Web via mdlk12.org

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Freedom on wheels

magic is in the movement

The story I wrote about my having been confined to a wheelchair at age three was mostly true.  In this post, I’m going to tell you the whole truth and a little bit more.

I was supposed to tell 4 bold-face lies as part of this writing project, but I told more truth than lies.

Below is a copy of my story.   I underlined the parts that are NOT true.   The whole truth is in blue.

I was confined to a wheelchair, as a result of a childhood bone disease when I was a toddler.  The doctors told my mother I might never walk again.  I hated that chair! My brother, who is ten years older than me, used to take me and my little chair on wheels to the top of our steep road, which was deep in the mountains.  My two older sisters would stand at the top of the road, holding my chair, with me in it of course, until my brother made it to the bottom.  He would count to some number, which was their clue to let me go.  I would fly down that mountain in my little chair!  It was great fun!  The best I can remember, my brother always caught me.  My mother didn’t mind this game. I wasn’t happy the day I put my foot on the floor and was able to walk again because I had to give up my little flying chair.

The truth:

“A little doll’s chair,” is what my mother says the wheelchair looked like.  “It was just so small.   It didn’t look like it was for a person.”

I had Kohler disease, which is a rare childhood bone disease.  It attacked my ankle bone when I was three years old.  The doctors did tell my mother I may never walk again, but they also told her that it could go away as mysteriously as it had appeared.

I didn’t hate the wheelchair.  I’m pretty sure I loved it.  My mother says that I had crawled around for several weeks before she, “put her foot down,” and demanded that I be taken to the nearest hospital for x-rays.

Putting weight on my foot was intolerable.  The little chair gave me freedom to go outside and play.  At three years old, I guess you live in the moment.  I was too young to understand what never being able to walk again meant.   I was also too young to know the danger of flying down that road, but then sometimes, our memories play tricks on us.

About ten years ago, my mother and I visited the place we lived when I was in that wheelchair.  There was a housing complex with relatively small one story dwellings that was turned into offices for the Juvenile boys home.  My dad worked there and we had lived in the complex, which was for the employees and their families.

Mother and I were both a bit shocked.  The metal fence surrounding the property surprised her.  It was one of those tall fences with thick rolls of barbed-wire on top.  The place hadn’t been fenced in when we lived there.

I remembered the houses being massive with tall and wide dark windows.

“There’s our house,” Mother said.  There weren’t any big houses and the windows were those small rectangular ones you see in beach houses.

I remembered front porch being high up off the ground.  I sat on the steps every day, weather permitting, with my three year-old boyfriend, talking and waiting for the school bus to drop off my older siblings.  I remember being happy when he was there.  We were the best of friends and had terrific conversations about life.

There were only two steps, very close to the ground.  I couldn’t believe how much bigger things were in my memory than they were in reality.

I looked for the steep road where I took the wheelchair flights.  Mother pointed out our road.

“That’s it!”  I was completely astonished.  It was indeed a hill, but didn’t measure up by any means to the one I recalled.

I told her about flying down the mountain road.  She says she didn’t know anything about that.  I sure remember it.  My sisters say they remember too, but oddly, my brother doesn’t and he’s the oldest.  I think he forgot many things he did to his younger sisters.  Like the time he put me in a garbage can and rolled me into the road, but that was later and it was a country road.

I remember clearly the day I put my foot on the floor, which I did every morning, and it didn’t hurt anymore.  The pain was gone!  The bone disease went away just like the doctors said it might.

I didn’t mind giving up the little chair, but I did think I should get to keep it for a souvenir.  I remember wanting it.  Mother says she didn’t think I needed it and donated it to another family.

My ensuing enthusiasm for using my legs was grand.  At age five, I led a large marching band in the Christmas parade because the band leader said I was, “the best little marcher they ever had!”  I took jazz and modern dance classes, but then we moved to the country.  Dancing the way I had learned would have been considered a sin.  This disappointed me, but I soon discovered bluegrass and clogging, the latter of which was a required class in the elementary school I attended.

I didn’t have a bicycle though.  I’d had one when I was five, but then my brother got involved.  He let go of my bike before I learned to ride and I had a bad accident.  I was hurt pretty badly.  I heard my dad ask my mother if I would still be able to have babies.  I was confused.  She told him to shut up and get the car.

Because of that accident, my dad wouldn’t let me get near a bicycle for years, even though my brother always had one.  My two sisters never wanted one, which I always thought was weird and it didn’t help me when I pleaded for my own.  Finally, my dad gave in on my thirteenth birthday.

We went to the local bicycle shop, which was also an auto-parts and lawn-mower shop.  Everyone there knew my dad.  I’d been there with him plenty of times and they all knew I’d been begging for a bicycle for a long time.  I was often invited inside the owner’s house next door and his wife would give me milk and homemade cookies.  I loved her cookies and she made them the day I got my new bicycle.  It was a great day.  My dad let me ride it home, which was less than half a mile away.  You could throw a rock from there to our back door.

I loved that bicycle.  I could ride it fifty miles without thinking a thing about it and I did, often.  There’s a long story about what happened to that bike, but it is one sad story, so I won’t tell it here.

I grew up, had a son and bought us both bicycles when he was three years old.

His was a tricycle, but he begged me to take those two extra wheels off.  “Your bike doesn’t have them Mommy,” he said.

We took the wheels off, but I had a person at each end and several in the middle to catch him if he fell.  He did fall, but he didn’t have far to go and it was in the soft grass.  He didn’t get hurt.  He got up as fast as he could, before any of us could get to him and jumped back on the bicycle.  It was very funny.  I remember him looking back at us as he rushed to pick that little bicycle off the ground.  He never used those extra wheels and we had years worth of fun riding together.  We still enjoy riding together.  I like that.

I can’t go cycling like I could before being struck with Chronic Fatigue Syndrome or fibromyalgia.

However, I do have a fun bicycle.  I call it my magic little bike.  It brings out the best in me when I ride it.   I absolutely love moving and feeling the wind on my face.  That’s part of the magic.  Being able to move without pain.  (The trick to that is being on a flat road.)

My little bike also has pink and white streamers and an awesome bell!

Occasionally, I’ll still take my hands off the handle bars and hold them in the air.  I like that too.

Thanks for visiting Dogkisses’s blog!


Will Return…

Life and Health, one and the same...Life and Fatigue are one and the same lately, along with a large dose of pain.  I take leave, but I shall return when more rested.  Hopefully sooner rather than later.

As always, thanks for visiting Dogkisses’s blog.

Image of clock via IconDoIt, The blog.

Fibromyalgia, family and a funky chicken?

invisible pain and fatigue is a long hard row to hoeWe don’t talk too often and sometimes I simply don’t know how to communicate with my relatives.

I recently received an email from one and the subject line read: ” You must do this!!!”

I think I thought there was some type of national emergency or something.

It was an email asking people to pray for people with cancer and then to forward it on to others.

Well, I thought, who would I send it to?

Most people I email to are really busy.  I feel like I’m asking too much of their time if I send them emails asking them to forward a message, although, now that I think about it, people do that with me for causes they believe in all the time.

I didn’t think much about not sending it on as requested and then I saw a note at the end of the email — 93% won’t forward.

I knew I’d be one of the 93%, which kind of didn’t feel too good.  I felt like I would be in a group of people who didn’t care.

Maybe it was the subject line of the email–You must do this!!! —  along with the three exclamation marks that touched on my one fragile nerve I had left by mid-day.

I realized quickly that the email bothered me.  I was taking it personal, or at least in a way it was not intended, I don’t think.  It had nothing to do with my level of care about people who have cancer, along with their loved ones who are grieving too.  I’m sure I care and I did take a moment to say a prayer.

My mother has survived breast cancer and I’m grateful to modern medicine for this because she had about seven or eight aunts who all had breast cancer.  They were not as fortunate to have the treatment that my mother had.

My father died after a long bout of severe pain from cancer.  My grandmother died two years ago, also in severe pain, with a type of bone cancer.

My beloved Free girl, my canine companion, had to go due to bone cancer in her leg or from all the pain pills, the latter of which made her sick.

My friend Sonny, who passed away one week ago today, had throat cancer.  They were able to remove the tumor but the radiation left his throat too dry to swallow, leading to his having to use a feeding tube, subsequent weight loss and weakness, all of which shortened his life.

I am no stranger to loss as a result of cancer.

I care.  I care about people in general.  I hurt when someone I care about and or love is hurting or sad.

I feel sad for people who are suffering.  People with terminal illnesses.  People living in a war or are watching family members being abused or killed.  I feel sad for people who are starving or sick without access to medical care.

I feel sad for all the broken hearts in the world.

My adult son who has a huge place in the center of my heart has suffered many times and he is a young man.   My heart has broken many times for him and for the other young men and women I’ve met through him who I’ve seen suffer.

I feel sad for the lesser injustices, such as my ten-year old friend who wishes for things, such as an end of the school year celebration, but who graciously accepts that her family doesn’t have enough money to celebrate in a way that  a young person might dream about.

Sometimes I care so much it hurts and I don’t even know how to feel such strong feelings.

I felt selfish by the way I was experiencing the particular email from my sister.  The three exclamation marks felt like — well hell, I don’t know what it felt like, but it wasn’t a nice happy feeling.

Maybe I wish family members would take a small interest in  learning a little about Fibromyalgia and Chronic Fatigue Syndrome.  I wish they were able to understand the seriousness of the illness and acknowledge it.

Sometimes I think they are afraid of acknowledging how serious my illness is because if they did, then they might feel some sort of obligation.

I’ve been what you can safely call sick since 2005.  Many of my symptoms were magnified over the past year.   Two accidents and a narcissist had a strong impact on me, my health, and my life.

If folks don’t believe much in fibromyalgia and think the term Chronic Fatigue Syndrome is nothing more than the way they feel after a long day at work, then it isn’t logical to expect these same people to take the term narcissist very seriously either. 

People who don’t believe you are sick when you are, or who may believe it, only they think it’s because of something else, not what you have been diagnosed with and what you know is true, are not showing respect.

Basically, if you don’t have cancer and haven’t been told you’re dying, or if it isn’t an illness people are familiar with or can see, then I believe many people write it off to being psychological.

When I read the email of what I “must do!!!” — I felt a surge of emotions.

What about me I thought? I am aware, as I think many of us with fibromyalgia are, especially since other people will often remind us, that it is not a terminal illness and for this I am certainly grateful.   Should I be more grateful than a healthy person should be?  Aren’t all us who don’t have a terminal illness grateful for that?

Knowing I don’t have a terminal illness indeed offers me a sense of gratitude and feeling gratitude is a healing experience.

There are plenty of days when I feel like this illness is killing me.  I get scared of the future too.  There are days when I’m so tired, so incredibly fatigued, that I feel like the walking dead.

Brain fog and physical fatigue together, plus pain all over my body, even with strong medication, gets me feeling a bit… depressed.

This illness has taken my career and any confidence I  had about future earning potential.  I can’t do a great deal many things that most people take for granted.

My friend, Rose, who has a health blog, Seeking Equilibrium, is too cool.  I shared with her my feelings and she re-wrote the text in the email asking for prayers for people with fibromyalgia.

I wasn’t brave enough to send the revised email, until I got the same email from a cousin, and then saw that the original one came from my other cousin.  I was struck with courage, opened my email, added some recipients and clicked send.

I doubt very seriously if anyone forwarded an email asking for prayers for people with fibromyalgia.  Maybe, but my gut feeling tells me probably not.

My mother came to visit a week or so ago.  She came to help me out a little.  I know she wished I’d had more free time, but I didn’t.   I told her I was trying hard to finish a project and she understands it was important to me.

My mother wanted to have time with me that I simply didn’t have that week.   She wanted us to have a fire outside, but I did not have the energy at the end of the days.  I too wanted this.  I wanted to sit around the fire and see my mother happy, which would have made me feel happy.

“We didn’t get to spend any time together,” she told me after five days of being here.  “I wanted to go to the thrift shop(s).”

I felt guilty.  First of all we had spent time together.  I told her she would be walking into my life as it goes during the week.  I have many ongoing obligations and people don’t realize how much of my time and energy is spent on fulfilling them.

Then too, going to one thrift shop in a day is my limit and even then I can’t stay long.   I can’t walk around a store for more than a few minutes before pain sets in.

Now, I just say I’m sorry to my mother when she wants to go shopping and I’m too tired.   It’s time like this when I feel like a disappointment.

The disappointment isn’t only about her though.  One of my favorite things to do is thrift shopping.   I miss it too.

In pain, fatigue, sadness, grief and loss, I’ve found a few ways to live my life the best way I can — with the knowledge, tools and abilities that I have in this moment.

I recently decided to try a little harder to actually live my life.  I may only get moments in time, but I’m getting them.  I hope those moments will turn into days and weeks.

I’m finding laughter again, which is excellent medicine.  I heard myself laugh today.  The sound of it lingered in my mind for a minute or so.  I liked it.

I’ve gotten several pictures of my son now, smiling again, which seemed lost to the lens of a camera for a long time.  I’m enjoying music again.   I’ve made some new friends.

dancing like a funky chicken is good medicine

funky chicken

I’ve even learned a new dance that my ten-year old friend and I came up with, “The chicken dance,” she calls it, which is easy because when I do it, she and her sister laugh so hard they quickly fall down on the sofa, so it only lasts a second or two at each go.

I’m still tired though.

Click on image for a little history of the chicken, from IconDoIt, the blog.

Image of Gardenlady by, “The Graphics Fairy”.

All content in this blog, including images and external links are subject to a Creative Commons Attribution-Non Commercial-Share Alike 3.0 United States License.  See my Terms of Use in my sidebar for more information.

Thank you for visiting my blog.

dogkisses.

Related posts from Dogkisses’s blog:

Without the label of fibromyalgia

Fibromyalgia Misunderstood


I’m talking about Pain.

In the wee hours of the morning, around 3:30 am today, I woke up.

I was fatigued and had fallen asleep last night, forgetting to take my pain medication and my anxiety medication, both of which I need, the latter of which is for anxiety, but also manages a neurological disorder I have, an essential tremor.

I don’t remember the details of my waking in chronological order.  I remember having the thought that I should definitely update my will.  I remember being scared.  I was really scared.

The pain in my chest and lungs is what was the most scary I guess, but all of it was bad.  My entire body, once again, felt like it was on fire.  It’s more than fire though.  It’s more than a burning.  It’s so much more I don’t seem to have the words for it.

They call it fibromyalgia.  I wonder.  Sometimes I wonder what my doctor would do if I was his daughter.   He has three and often speaks of them.  He is a compassionate man and I like him.  So I’ve wondered this.

Would he take me to some fancy medical facility up north?  Could they help me?  I know he would pay for acupuncture treatments, which helps me tremendously, but I can’t afford them.  He once told me he would like to learn acupuncture himself.  I told him I needed him to keep on being my doctor instead of going off to acupuncture school.  He laughed.

But my good doctor was not here at 3:30 am when I woke up this morning nor was anyone else, except my dogs, my blessings from the universe.  They were here and their being here makes a big difference in my ability to remain sane in such a state as I found myself in this morning.

Not only was I in pain but the tremor was there.  My insides were shaking.  I was sweating a little.  The pain was so intense I had to lie there and get my breath enough to be able to get up and go take my medication.

I lied there for a few more minutes before getting up.  I guess I was in shock.  My lungs hurt when I breathed, which I could barely do.

I’ve been told that the pain I experience in my chest area and when I breathe is from fibromyalgia.  They tell me that the heart is a muscle, which I already know that, and talk about the connective tissue around the heart and lungs, but they have also told me it’s rare to have the kind of serious pain I have while breathing.

Without the medication I can’t breathe.  It hurts too bad.  This is scary and I don’t think the doctors are aware of how serious it is for me.  I guess I need to tell my doctor but what would I say?  He knows I live in pain.  He gives me medication.  Maybe I’m afraid he will say my pain is too much for him and would send me away.  Send me to some pain clinic where I’ll be a number and/or where they might not believe in fibromyalgia.

Yeah, I am scared.

The fibromyalgia doctor I saw twice said sometimes it does get into the lungs and that this is almost like a medical entity of it’s own.  Great I thought.

It’s scary because I think what if something happened?  I live alone and what if I forgot my medication and couldn’t get to it?  I have a phone and I would dial 911, but would they believe me if I told them I couldn’t breathe without my medication?

There is stigma around pain medication and medical professionals are not immune to it.

What would I say if I did dial 911?  I have fibromyalgia.  I can’t get to my medication.  I can’t breathe without it.

Would they think I’m a drug addict?  A hysterical woman?  A psychiatric case?  I wouldn’t be a “drug-seeker,” because I have the “drug.”

It took about thirty minutes for the medication to work.  I could breathe again.  I don’t remember now what all went through my mind during that time, other than thinking about updating my will, but I know a lot did.

It was a painful, scary and depressing experience, but it’s over…or is it?