Posts Tagged ‘chronic illness’

She’s the Sweetest

RUTHIE

We walked down the corridor in the shelter for the second time. 

“Look at this one,” my friend curiously remarked.

She was the only dog not barking.  

We stopped to look, which is all I had planned on doing that day. 

“Oh,” my friend added.  “Her name is Ruthie.  How sweet.”

What an odd name for a dog, I thought to myself.

Ruthie.

Most dogs have exotic or quirky and whimsical names these days, it seems, but Ruthie is such a simple name, you know?

She put her paw up against the cage.  I touched it and so did my friend.

“She has puppy paws!” my friend exclaimed excitedly. 

My friend, Tiffany, was a dog whisperer in her own way.  Actually, she was more like a dog’s angel.  I was never sure whose side she was on when it came to her helping people and their beloved pets, a career which she had temporarily chosen.

“What do you mean puppy paws?” I asked.

“They’re soft!  Touch them,” Tiffany answered.

I’m pretty sure Ruthie became my dog the second I touched her paw and it was unusually soft!

“You should change her name,” the little boy who lived across the street from us told me the first day I took Ruthie out for a walk.

“Yeah!” agreed his young playmates.

“To what?” I asked, but none had an answer.

The children walked closer to us.  They tried petting Ruthie, but she became frightened by the youngest one.

She had been adopted for two weeks and returned to the shelter before I met her.  The shelter staff said the family had a toddler who was allergic to her.  That’s all they could tell me about her past.

Ruthie was indeed shedding a lot, but my gut told me it was from stress.  I was right too. 

After several days of living with me, she started to shine and I discovered, I had the softest dog in the world!  Everyone said so too.

I didn’t yet know she is also the sweetest, but I tell you, there isn’t one any sweeter than Ruthie is.

For the first few days of our lives together, her name came up for consideration.  Mostly because people remarked on how it wasn’t snazzy enough.

I forgot who it was, but somebody suggested that I read from the Book of Ruth in the Christian Bible. 

“In Ruth 1:16 and 17 Ruth tells Naomi, her Israelite mother in law, “Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God. Where you die I will die, and there I will be buried.”  (SOURCE: Wikipedia).

I read the story and I knew my girl had the perfect name.

Ruth was loyal to Naomi, even after her husband, Naomi’s son, died.  Naomi had lost her husband and later lost her other son, leaving her widowed and without children. 

According to the law of the land, Ruth could have left for a better life, but instead she chose to stay with Naomi.  She married again and gave Naomi a grandson.

How could I think of changing little Ruthie’s name after reading that!  I had been given a gift, I believed. 

In the spirit of dogs and the love they give, my gift was a new dog.

I needed rescuing and I fully embraced the love from my new four-legged friend who had come to save my life.

After taking Ruthie to the dog store to show her off and buy a pretty new collar, we went home and I looked over her papers from the shelter.

I was surprised to see that Ruthie’s overall grade was an A-.

How could such a sweet loving dog not get an A, I wondered, so I read on.

“Ruthie pulls back when people lean in toward her,” the report read.

To get an A, a dog must also lean in when strange humans try to pet them, which I found curious.  I mean, if I had been abused, and I could tell that Ruthie had, then I wouldn’t lean in when strangers come toward me either.

I knew I had a smart dog!

Ruthie Mae is the sweetest dog in the world

Ruthie in her element hunting insects!

Without Ruthie Mae, I may not be alive today.

Ruthie didn’t save me from a burning building.  I’m not blind.  I have both legs, which I’m grateful for, and both arms too.  I am not in a wheelchair.

I am disabled by illnesses most people can’t see with their eyes. 

These illnesses have changed my life, and me.  I spend more time alone than I did before I got sick. 

I’ve also experienced significant loss of connection and sense of belonging, both in community and family, as a direct result of disability.  I lost my career and many people have judged me for what they can’t see or understand. 

Ruthie is my medical companion animal.  She’s officially an emotional support dog.   

Ruthie gets me outside.

She helps me want to keep going when chronic illness takes away my hope.

Ruthie is a teacher, like all dogs, I believe.  She shows me what love looks like. 

She teaches me compassion, tenderness and acceptance. 

It’s hard to put into words what all Ruthie means to me and how she helps me live.

Ruthie Mae’s love and companionship is always there for me.  No matter how sick I get, she loves me.  I don’t have to put on a well face for Ruthie.

Just yesterday, I was sad.  Ruthie jumped up on the bed and put her little paws across my ankles.  She gently laid her head on my leg.

“You really are the sweetest dog in the world,” I told her.  The tears stopped and I couldn’t help but take joy from the love I felt.

I thought about the kind of life she could have had if she had been adopted by a healthier person and one who has more money than I do.  I imagined her running in an open field of grass with her pack.  Then, I remembered the story of Ruth. 

Perhaps if Ruthie could choose, I imagined, she might choose me over anyone else, no matter what they had to offer her.

One thing I know.  I am loved. 

Ruthie Mae’s Human Mom,
Michelle.

Thanks for visiting my blog!

Note:

This post is a follow up from the most recent one, “Help the Sweetest Dog in the World.” 

Thanks for reading, and if your heart moves you, please visit my campaign page here.

 


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Green Healing ~ Recalling a Horticultural Summer

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BUTTERFLY BEAUTIFUL

The last days of Summer are obvious.  The light has changed coloring the sky a deep blue.  The clouds are big, fluffy and milky white.  Horticulturally, we’ve planted several seed beds for Fall harvesting. 

The wildly stimulating grand symphony of color and life that the excited Swallowtails, Fritillaries and Skippers performed has slowed to a soothing and reflective melody, with the pretty ‘Little Yellow’ and the cautious, interested beautiful Buckeye.

The Sunflowers are gone, along with the melon patch.  I was absent the day our volunteer group cleared that garden, but my son went.  

I spent the time in the parking lot lying down in my car due to exhaustion.  (I may add a personal note about that at the end of this post). 

“You should have come today,” my son said after volunteering with the Horticulture Therapy group.  “We had a great time.  You missed out.”

I was happy that he had fun and especially to see his smile.

“Smell my breath!” he exclaimed.  “Smells like Basil doesn’t it?”

The fragrance was strong, I thought.  Whatever they ate must have been good.  “How are the Sunflowers?” I asked him.

“We ripped them up and cleared all that out,” he answered, referring to the space where the plants had lived.

“What did you do with them?” I asked.  It was a futile question, I realized.  I knew they were in the compost, along with the dozens of caterpillars on the Fennel plant that I had hoped to see become Butterflies.

“Yep,” he reiterated, “They’re gone Mom.”  His tone sounded of a time and place when men must tell women of particular actions that simply had to be done and only by men.

He’d been perspiring and had dirt on his clothes.  He looked satisfied.  I gathered that his physical strength and abilities had served the group’s work efforts well, which I believe is good for a young man.

I did feel like a part of me had gone to wherever the Sunflowers went.  I wished, in one way, that I’d been there for a proper parting.  I loved the Sunflowers.  Upon reflection, I figure the compost is as good a place as any to be with Mother Earth.

The next day I stopped by the gardens alone.  I wanted to sit for a while, remembering my Sunflower Summer.

Each had unique differences.  There were the giant yellow ones, which did demand first greetings from onlookers.  Some were stunningly bright with pointed petals, while others were softer, with petals that looked like long blond locks of hair.  The pale yellows were almost transparent in a particular light of day.   I smile every time I remember the one with a head so big ‘she’ had to be tied to Bamboo.

Most surprising to me were the red Sunflowers.  The wonderfully rich colors are worthy of any camera!  They were beautiful.

There was one Sunflower still standing.  My son had planted it down below the main gardens against a tall cement wall.  His Sunflower was always different from the others in the most interesting ways.  A corner of the bloom’s circle of petals curled around the large spiraled center.  I often thought it looked like the small hand of a shy child, perhaps covering her face after a compliment, but mostly, the beautiful flower reminded me of my son.

In the brightest Summer days the plant stood tall.  As the days went on, it started bending forward, as though to watch over the smaller plants blooming closer to the ground.

One day I visited the gardens when my son wasn’t feeling well.  His flower was leaning so far over that the petals almost touched the tops of the relatively short Zinnias.  I couldn’t believe it was still standing.  I inspected the stem thinking the plant might need to be staked.  Surprisingly, it was thick, obviously strong enough to handle the form it had taken.

A garden and the life it brings is a continuous source of metaphors and personal reflection.

The critters who visited, along with the more permanent residents in the gardens, are treasures in my heart.  I remember my first ‘Green Healing’ garden friend, the little Lizard who lived in the Cabbage patch.  I fell in love.

My next Green Healing friend was a Ladybug.  The Horticulture Therapist pointed her out to me as we were walking to the Greenhouse on a chilly Spring morning.  She was sitting pretty on a leaf in the unforgettable garden of Crimson Clover.

The therapist knew I had enjoyed my camera and encouraged me to take a picture.  I snapped a few shots of the little ladybug.  Returning home, I uploaded the photos.  I saw what I loved.

That little ladybug was absolutely incredible, at least to my eyes.  I couldn’t believe the details in the photograph.  I couldn’t believe I took the photograph!  The morning dew spiraled down beside my new little friend like a tiny string of graduated pearls.  She’s my Lucky Little Lady who got me hooked on nature photography.

I’ve enjoyed all the wildlife in the gardens, most recently a new baby Turtle rooming with the Frog in the Pond Garden.  I love their photos, but Baby Turtle doesn’t like posing for the camera.  I try not to disturb him.  I guess, in my heart, I feel most connected with the Butterfly.  Everything about them is amazing and beautiful.

I’m not surprised that the Buckeye was the most prominent of the winged friends during my most recent visit to the gardens in the last days of Summer.

These beautifully winged wonders have an average life span of only about ten days, but their flight period is year-round in the southern United States.  The Northern ones do not overwinter and many return southward in great migrations. 

A small patch of the orange Mexican Sunflowers are still thriving.  I imagine they had a lot to do with the delightfully high number of butterflies in the gardens this year.

There are several other flowers blooming that obviously produce nectar, but I’m not familiar enough to know their botanical names.  I love the big white ones.

Nectar Producing Beauty for Hummingbirds and Butterflies

The hummingbirds and butterflies like them too.  I’m sure there is plenty of nectar for the late Summer and soon to arrive Autumn winged visitors. 

Sulfer Butterfly on Nectar Flower

Personally, the Summer was for the most part, difficult.  I’m grateful for my time with the volunteers and in the gardens.  It was time away from the harsh parts of my life.  People in that group care about people and those are always good kind of folks! 

I’m also glad to have spent time watching and being with the Butterflies.  On that note, I’ll recall the pretty Painted Lady who put on the most colorful show of the year with the orange Sunflowers and pink Zinnias.  ‘She’ showed up during my recent visit, but I didn’t recognize her.

After taking several photos, I asked a staff member to look and tell me if she knew the Butterfly.  “I’m pretty sure that’s a Painted Lady,” she said.

Ha!  I thought to myself.  “I don’t think so.  Look at the wings,” I replied.  They were jagged like those of a Question Mark or Comma.  I was confused and thought she didn’t know her butterflies all that well, which surprised me.

Again, it wasn’t until I saw the images on the digital screen that I realized the woman had correctly identified ‘my lady’ painted pretty.  She may have had a difficult summer too.  Her wings told of predators, but mostly of survival, because she’s still flying free.

Painted Lady with a few marks of a butterflies life

On a more personal note, I have pneumonia.  I knew I felt terribly bad, but I attributed the worsening of my health over the past six weeks or more to stress and possibly, utter exhaustion.  Also, living with chronic illness means it’s hard to know the difference between your normal way of feeling and a nasty infection.  According to the doctor, the large pills she prescribed should get me well.

Along with the medication, I’ll look to my jagged beautiful Painted Lady!

Thank you for visiting DogKisses!  Pardon the lengthy post.  It took me a while to write and there are probably grammatical errors.  I hope to be back to myself again soon, which would include having energy to read my favorite blogs.  Until then, I hope you are having your own Green Healing moments this Summer.

Peace and Pass it on.

The Elusive Fence

“Everything God creates is good, and God made sex, so therefore, sex, when done well, is divine.” Amy Wolf

“I’m a FenceSitter,” I told him, as I was finishing, rather nervously, my third glass of water. Our eyes met but I’m not so quick when it comes to what I suspect is fairly easily discernible to most folks.  I’m usually the last person in a group, besides one of my sisters, to get a joke.  People’s witty remarks come slowly to me.  I think way too much.  Our conversation continued without my having taken note of an elusive imploring look in his eyes.

“What do you mean?” he asked as he sat there,  seemingly content and happy in one of the handmade chair-stools at the large wooden table in his kitchen.

“Sometimes I don’t know what to do,” and I told him a little about what being a FenceSitter means to me.  I also told him the story behind the wonderful image.  He still hadn’t said anything as to the irony of what I was describing to him.

He grabbed another beer.  “Just do whatever you want to do,” he said with an ease of mind that may accompany a carefree lifestyle with minimal responsibilities.

I needed to decide, I thought.  In reality, I’d already decided on what I was going to do with my evening.  The navy blue shirt he was still pulling over his head when I opened my door felt like a sudden hard rain that comes while you’re driving,  causing you to pull over to the side and wait.

“I guess I don’t know what I want,” I responded.  I looked at the drawings on the large table, along with initials and short sentences.  I imagined the people who had sat there most likely inspired by alcohol, the main source of which being Pabst Blue Ribbon and much of the time, Johnny Cash’s music.

“Well, that’s no good.  Let me get you another glass of water,” he said.   His apartment was quieter than usual for a weekend.  He said his roommate was gone.  I asked if he had plans for the evening.

“Nope,” he said, without any hint about what he might like to do or wished he could do, which was a part of my acute but temporary dilemma.  Another part was that when I’d sat down at his table and told him I was on my way out for the evening, he’d said, “You look nice.”  I’d never seen the look on his face that I saw in that moment.   His eyes had only traveled from my hair and face to the crisscrossed straps of my summer dress.  “Very nice,”  he politely added.  He reminded me of a cowboy in an old western movie when he nodded his head in a slight way giving me the impression that his compliment was genuine.   I needed more water.

“I can’t believe I’m this age,” I finally said, as I finished another glass of water with about twenty more minutes behind me.

He smiled.  “Are you saying making decisions doesn’t get any easier when you get older?” he asked.

“Exactly,” I said.  I was no longer sitting but had stood up, taking hold of my handbag and keys, even though it didn’t change the way I felt.   “I mean it ought to be easier by now.  I should know what I want.”  I realized that making decisions were much easier for me when I was younger.  I don’t know when things changed.  I guess when I got sick.

I do know one thing I want and that is to feel good.  I’m tired of being sick and damn tired of pain.  I’m really really tired of it.  I’m tired of feeling like life is passing me by because I’m too weak and fatigued to do the things I wish I could do.  I’m also tired of being indecisive and unsure of myself — sort of unfamiliar in my skin.

“Sometimes being a FenceSitter is hard,” I told him.  Time was passing quickly and I was counting every minute by the clock on his stove.

“Right now you’re sitting at a fence,” he said.   He’d told me earlier that he had built the table out of fence posts.  “How does that feel?” he asked with a  smile on his face.

I finally got it!  My new acquaintance is a FenceBuilder and I was sitting at the FenceTable talking about being a FenceSitter!. I laughed, but only slightly.  I was a little embarrassed that I hadn’t gotten this already.  I was also a bit taken by the irony.

“It feels pretty good,” I responded, and it did, except for my decision-making dilemma that I was creating on my own.  Nature had indeed slowed me down, but things had cleared enough so that I could have moved on towards my original destination.   Instead, I drank more water.  There were many things going on in my mind at once.

My age, being sick all the time, feeling like I’d lost so much time to grief, and last year, to an emotional trauma.  I wanted to live but that was why I’d made an earlier engagement.

“Help me out here,” I asked the FenceBuilder.   “I’m really too tired to drive,” I remarked.  I was sick.  It was true.  In fact, I was barely getting around but felt I’d go crazy if I didn’t get out and away from my home for a while.  I’d been in the bed most of the day with nausea and fatigue.  It had been a bad day.

“Ahh, you’re not too sick,” he responded, and he smiled.  He didn’t believe me.  I could tell.  I saw no use in trying to explain what fibromyalgia or CFS is like.  I did make an attempt at what felt like defending myself.

“I woke up sick.  I really don’t feel good.”

“Then why did you make a plan to go out?”

People don’t understand chronic sickness, surely not when they can’t see it, and even more surely, when the sick person is freshly showered and dressed up a little.  Looking good and being sick don’t mix well in the minds of those who’ve never experienced an everyday battle with illness.

“I just wanted to get out for a while,” I said.  We talked more and I drank more water.  I didn’t know what to make of the feelings I was having.  I wanted to keep my plans, kind of.  I think I wanted my cake and to eat it too, but I wasn’t sure that was the only dynamic happening.  I felt like if I was continuing to sit there with this man, that possibly that was exactly what I really wanted to do.

I honestly didn’t feel like driving by that time and quickly approaching was guilt about getting sidetracked, even if Mother Nature did have a little something to do with it.  The rest was up to me, like keeping my agreements with people, which is important to me.

As the minutes passed we continued enjoying each others company.  I told him the story of me having had two tick-borne illnesses.  I told him I’d been struck with Chronic Fatigue Syndrome after the second one, which was Rocky Mountain Spotted Fever that had lasted over a month before a doctor finally prescribed medication.  “I lost a lot of weight,” I said.  “I barely weighed a hundred pounds.”

“Well you can’t weigh too much more than that now,” he remarked. I realized he was right.  “I carry more than that around on both my shoulders every day,” and he laughed.

Mother Nature again!  I had a hot flash.  He got me another glass of water.  Now I was thinking about his arms and shoulders.  There had been many times I’d seen him arriving home in the heat after a long day of work without his shirt on.  Sometimes I’d wondered if it had been for my benefit but I always brushed it off.  I did however flirt with the young man.

Men flirt with younger women all the time.  Men date younger women all the time.   I’ve never flirted much, but I feel like time isn’t necessarily on my side.  If I’m ever going to know what it feels like to flirt, then I figure I better get to it, so I have, a couple of times.  It felt safe and I must admit, it was fun.  I had no clue that the FenceBuilder might feel the same way I was feeling when I’d seen him cleaning out his truck or meandering around in his yard without his shirt on.  Well, maybe I did have some clues.

I was trying to get more clues by the fourth or fifth glass of water I drank while I sat at the fence-table.  “Well, now I have more things to think about in making my decision, or rather, changing a decision at the last moment,” I said followed by a deep breath I felt like I needed.

“Like what?” he asked, seemingly naive but now, I realize, he most certainly was not.

“Well,  imagining you slinging around hundreds of pounds on your shoulders doesn’t help matters.”

He smiled.  I excused myself.  I needed fresh air.  I had to think about canceling my plans.  I felt pretty bad about it but time had gotten away from me and I guess, I simply couldn’t walk away from the desire to go back to see the FenceBuilder.

I made a phone call changing my plans.  I made a brief trip home discovering a plate of fresh pasta with herbs and chicken in my refrigerator.  A neighbor had cooked it for me and left it while I had been out.  I was starving.  I ate it immediately.  I felt better.  I thought I’d made the right decision.

Arriving back at the FenceTable I accepted a beer, which is pretty unusual for me, but I had a feeling the rest of the evening would be an unusual experience.

I think the FenceBuilder may have used my pain to get closer to my body, but I’m not going to hold it against him.  “Does your shoulders or back hurt?” he asked.

“My entire body hurts when it hurts,” I responded and quickly added, “although it does settle in my shoulders.”

“Would you like a massage?”

I never say yes to this!  “Yes, I would,” I said.

Stress had filled several consecutive days.  Financial worries had been making me nauseated but also disturbing me were my deep concerns about my son.

He has an ACT team who doesn’t do shit and this makes me mad, and stressed!  I am a mother — not a social worker, a doctor, a therapist, a money manager, which are all treatment services the ACT team claims to be providing for my son.  I’ve been doing their job for the best of a year.

After massaging my shoulders,  he casually sat back down in his chair.  Smiling he asked me what I wanted as he opened another beer.

I didn’t think much about my stress for the next twenty-four hours, other than I might pay a price in fatigue and pain.  Much fun was had.  There was nothing confusing about that.

As I write, still fatigued, I’m reminded of my wonderful meeting with a Morgan horse named Candy.  I knew I’d pay a price in pain for the fun lesson I had with her.   My body feels about the same today as it did two days after my lesson with her and I learned some things too.

Riding a horse gives me joy for several weeks afterward.  Horses are good medicine for depression.  I had great fun with the FenceBuilder, but unlike my time riding horses in which I always feel an emotional connection, I was left with somewhat of a wanting feeling.

Something was missing.  I realized it was in my heart.

I missed my best friend who is on another vacation.   I longed for his company all day.  I longed for a feeling of being connected.  I took my younger dog for an early evening walk to a nearby natural butterfly garden.

I thought about how I was feeling.  Embrace this wanting I feel. Know it and feel it. So I did.  It was not such an easy feeling to sit with.

Returning home I snuggled up close to my canine companions.  They are my best friends.  Their sweet eyes revealed their loyalty and love.  I rubbed their soft fur.

Lying in my living room, brightened only by a colorful hanging lamp I recently installed, I saw the light flickering on my cell phone.  My dear friend had sent me a wonderful long text message, which he’d never done before.  He usually emails from his trips away.  His text felt more intimate than the emails.  He shared interesting little details of his trip.  Little things that made such a huge impact on me.  This soothed some the wanting in my heart.

I realized as I embraced the feeling, that I have some really good people in my life.  People who understand I live with pain and sickness.  Not dozens of people, but a few, which is enough.  I was reminded of how much I love these friends.

I learned too that part of why I enjoy riding horses is that they sense how I feel and this is a wonderful connection.   I actually communicated on an emotional level much more with the Morgan, Candy, than I did with the handsome FenceBuilder.

I learned too that FenceBuilders are indeed strong.  I have no doubt in my mind that the man can carry two or three times my weight over his shoulders.

As to being a FenceSitter, well, maybe the years ahead of me will change this some, maybe.  For a short time I was free, like butterflies on a sunny summer day.  As to my decision to return to the handsome FenceBuilder’s FenceTable, accepting a shoulder massage, which I had strongly suspected would lead to more, I have no regrets.



Fibromyalgia, Attitudes and Acceptance

The Buggy Ride

Find Something Fun to Do

Fibromyalgia, as with any serious and chronic illness, can drastically alter your life.  Mine has certainly changed.

I had a business planting flower gardens to attract butterflies, which I totally loved.  Being a butterfly (and hummingbird) gardener was a big part of my identity.  There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.

I remember when physical pain first started to concern me.   I would go out to my garden every day to do something.  One day I noticed how stiff my joints were.  I bent over and felt pain in my hips.  Then it started hurting in my ankles.  It was a new type of pain that I had never experienced before.

I’d been bitten by a little deer tick earlier that summer.  Little did I know this might change my life.

One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time.  It was nearly a foreign word.

Due to inadequate health care where I was living, I didn’t get to see a specialist.

I had dealt with arduous episodes depression in the past.  I had already in many ways, gone through a process of elimination as to what I identified with in life.  I stopped my gardening business and later went back to college part-time.

I moved to a metropolitan area after the tick bite that summer when the joint pain had started.  I believed the health care would be better and I think it has been.

I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.

The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well.  By 2006 my life had turned upside down and illness defined every moment I lived.

Just about everything in my life has changed.

I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.

I certainly can’t plant gardens anymore.

My hobbies are less active. My walks are slower.  I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness.  We go slower and stop more often.

Time is different too.  I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing.  I don’t know if I’ll be in pain two weeks from now or even tomorrow.  I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.

I am grateful to receive disability benefits. I have health insurance.  It’s pretty hard making it on a low income.

Some people look down on those of us who receive disability benefits.  People complain about their taxes, but I pay taxes too.  Every day in some way I pay.

If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing;  all just to get, “a check.”

The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.

I was once a firefighter too.  Part of my identity had always been that I was physically very strong.  I was proud of this and enjoyed recreational activities, especially while raising my son.

Another part of my identity was being able to handle a lot of responsibility.  I was a single mother who worked hard and I burned the candle at both ends.

An expert in fibromyalgia told me this is the case with many people with this condition.  The majority of patients, he said, never were the kind of folks who sat around all day doing nothing.  Just the opposite for most of us.  We were athletic and go-getters.

I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences.  I’ve had to give up many of my preferences.

I hear all kinds of remarks from people who don’t understand what they can’t see.  I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding.  Many people don’t believe what they can’t see.

People say the weirdest things.

“I work in my yard (all day) because I have to.”

“I have to work everyday because I don’t have a choice.”

I stopped working because I didn’t have a choice.

“I wish I could get paid for feeling bad,” a neighbor told me.

“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.

“You just get worse and worse don’t you.”  (Same relative).

“You sure do stay sick a lot.”  Lots of people have said that to me over the years.

Some people mock fibromyalgia.  Most people have no idea what it is.

Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt.  Not only do they hurt, but they also cause us to withdraw into isolation.  We become alienated from society, our community and for some of us, from our family.

People with fibromyalgia often talk about having good days.  This means we have days when we wake up with some energy and less pain.  We can do more on these good days, which causes some people to think we’re faking illness.  If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.

We’ve all heard people say, “You look just fine.”

A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”

It was more of a statement than it was a question.  I didn’t know what to say.

“Well, my nose doesn’t hurt,” I answered.

She once referred me to a specialist for a digestive problem.  He was horrible!  He asked about the fibromyalgia, and then depression.  He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.

The doctor had suggested I go see the fibromyalgia specialist who had moved away.

“You look perfectly capable of driving four or five hours to me,” he said.  He failed to realize that I would have to go see the doctor and drive back home!

He continued and asked, “Did you walk here from the parking lot?”

“Yes,” I said, trying not to cry, but the tears were coming.

“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”

I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.

“Why are you crying?” he asked again, sarcastically.

I told him I was sick, in pain, weak and tired.

I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.

My current family physician understands fibromyalgia is a complex and painful condition.  He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.

I was finally able to go see the doctor.  I told him that my family physician wanted his advice.  He said to tell him he was doing the right thing by treating my pain.

He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick.  Some patients cannot handle those drugs.  I’m one of them.  Some patients need tried and true pain medication, for pain.  Perhaps that is a little too simple for some doctors.

The specialist also said a patient should not be expected to live in pain when there is medication available to treat it.  He said it was neglect when doctors choose not to treat pain.

I told him about the remarks from my former doctors and nurses.  He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”

He was a great doctor!

Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!

They’ll say things like, “It’s a label you do not want.”  They ought to say it’s a serious illness you do not want!

We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”

I think many people do get wrongly diagnosed.  I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.” Thinking

It’s hard to let go of all the things I used to love doing.  It’s hard accepting chronic illness.  It’s harder hearing hurtful remarks from family.

I have a few things I enjoy doing.  I started this blog, which I do so enjoy.

I love living with dogs.  They take me for walks and help me get through many hard times.

I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face.  It reminds me of myself.

I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.

Thanks for visiting Dogkisses’s blog.


dogkissesthat's a mighty cute dog!dogs never accuse you of faking anything