Posts Tagged ‘living with chronic pain’

You cry fibromyalgia

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



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From the patient in pain

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.

Time out…

Mystical Mountains

Sacred Oats fall Crows came to call

A magical view of those rolling green hills

those hills sure do call my name

My beloved 4-legged guardian and I walk barefoot

green grassy meadows where the ground is soft, white-tail deer roam and crows come calling

Where the Sacred Oats fall…  Crows come to call

Suddenly we danced in the night around the fire

We danced at night.

Below are some of my journal entries during my camping trip.  They speak mostly to pain and challenges.  I’m a little surprised.  I did actually enjoy myself, at times, but apparently there was more pain and hard times than I realized.  I do love those hills.  I loved some parts of the trip.  Still, these entries mostly reflect how hard the trip was for me.

–Today we are in the mountains.  Many things occurred over the past few days as I was getting ready to go camping that I didn’t like.  But I’m here.  A moment alone now as my son, a man now, and our two young friends are with me.  Of course our four-legged are here too.  Well, my moment is over.  Son is back.

–Preparing for this trip was extremely hard.  Bending over a lot while packing caused severe lower back pain for me.  I had to walk through the fatigue.  I had to dig deep inside for the will or whatever it was that I had to have, determination I guess, to keep on packing despite severe pain and fatigue.

–I fell.  Slid down a moss covered set of stone steps.  No bruises.

–Sacred oats gone bad.  I am not eating from that bowl.

–I’ve been terribly sick and pretty much having to go at things as usual without much help.  It’s been hard.  I had to do most of the work preparing this trip.  My son isn’t doing well.

–I’m exhausted.  Completely.  My pain levels are off the scale.

–It’s nice writing out here.  My dogs are lying next to me.  The young people went on bicycle rides.  It’s very quiet.

–I love being here.

–Butterflies are everywhere.

–I think the sacred oats that went bad have left us now.  I hope.

–They’re back.

–Well, maybe those bad oats didn’t leave us.

–My pain has hit hard sitting here writing.  I’ll lie down soon.

–God I’m tired!

–My son is having a psychotic episode.

–My intestines hurt like hell.

–I’m watching the last log burn.  Now this wood, well, it’s amazing!

With all the pain and frustration that came with that trip, I managed to get some time out.  I needed to get away from flat land.  I needed to go where the hills surround me.  I needed the cool breeze that always travels through those rolling green mountains.


Nothing else but time for fibromyalgia

nothing but time for fibromyalgia wellness requires strict lifestyleI’d been debilitated by a muscle spasm for five days before going to my doctor yesterday.  I would have gone to see him sooner but I didn’t have anyone to drive me and I simply couldn’t drive that far.  I’d taken my medication for breakthrough pain and was worried about not having it later in the month. I told him I’d been in so much pain that I couldn’t think without medication to relieve it.

“I don’t know if the spasm is breakthrough pain or a part of fibromyalgia or if it’s unrelated,” I told my doctor.

“Was it a real spasm?” he asked.  Sometimes he asks geeky questions.

“Yes,” I answered confidently.

“It isn’t ideal that you took your breakthrough medicine for a muscle spasm, but at that point, you really didn’t have a choice.”  He wrote something on his notepad.

Now I wished I’d called his office when the spasm started.   He wrote me a prescription for magnesium mixed with a chemical in aspirin.  He said people find relief for migraines with the medication and that it may help muscles spasms.  He said more about magnesium, but I can’t remember!  He also told me to apply wet heat, which I could have done and didn’t.  Again, I should have called his office five days earlier.  He didn’t mention replacing my breakthrough medication.  I don’t like having to ask for extra pain medicine so I didn’t mention it either.

I didn’t have much in me so to speak.  It took strength for me to talk loud enough to be heard, much less communicate any concerns or other issues I was having.  I didn’t tell him my bladder was still hurting but I was tired.  I’d been hurting for days and it wore me out mentally and physically.  Sometimes I feel like giving up.  I feel like there is no hope.  That no matter what, pain will be part of my daily life.

“You know what I told you about the central sensitivity…” he said.  I nodded yes. I can’t remember his exact words.  He spoke to the pain from the view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome (CSS), which I think suggest that the level of pain I’ve experienced from the muscle spasm is part of fibromyalgia, but not necessarily a symptom.

I had a college mentor who told me many times, “If you can’t explain something then you don’t understand it.”  I guess I don’t fully understand CSS.  I understand the general concept, which is enough to know that people with fibromyalgia experience more pain from stimuli, such as a muscle spasm, than do people who do not have fibromyalgia.

I remember my good doctor saying something to the effect of the spasm having caused a blast of pain from my brain that I felt all over my body.  He said that would explain why I was feeling so crappy.  I’d definitely had a blast of pain!

“Do you have any patients who have severe fibromyalgia, who you are absolutely sure they have it, without a doubt, who gets well?” I asked him.

His answer, which was basically yes, was somewhat surprising to me.   I may have also felt a glimmer of hope, but it would have taken a lot to get me out of the despondent state of mind I’ve been in for the past week or more.   Too bad because he’s a good doctor with a sense of humor.   If I’m quiet then so is he.  If I’m in a lighter mood then he’ll tell me a joke, usually a geeky one, but sometimes that’s what makes it funny.

“Yes,” and he turned around in his chair to face me.  “There are some people who do get better.  They are people who follow a strict routine of exercise.  They practice stretches throughout the day every day.   They follow a strict diet.  They have very strict schedules and that is all they do.  These are people who have nothing else going on and devote all their time to practicing these things.  The people who are more likely to get well from fibromyalgia are people who have nothing else,” and he waved his hands in the air for an added effect, “nothing else going on — at all — that gets in their way.  They are people with nothing else but time.”

Could I be that person I wondered the rest of the day.  I’ve got the time.  I’ve also got a lot going on. 

This morning I visited a blog with the most beautiful photos of places where people were fly fishing.  I’d like to do that, even if I didn’t catch a fish.  I wish I could go to paradise, where I would have nothing else but time.

Image of clock by Leslie, at IconDoIt, the blog.  Copyrights apply.



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.



Without the label of fibromyalgia

why do some people dislike labels when they help us understand what is going onWithout the label of fibromyalgia, I’m a human being in severe pain.

I am a human being who feels pain 24/7, 365 days a year.

Without the label of Chronic Fatigue Syndrome — I am a human being who is more than simply exhausted.

I’m not talking about the kind of tired I used to feel after a hard days work.  Not the kind of tired some people say I might have, “because I don’t run ten miles a day like they do,” or “because I write,” or “because I need to get out more often.”

People who think they know why I’m tired or in pain, who don’t know one little iota of truth about fibromyalgia and Chronic Fatigue Syndrome, are people whose opinions mean zilch to me.

I was a firefighter.  My training made me so tired I had to go to the doctor.  This was before any diagnosis of fibromyalgia or Chronic Fatigue Syndrome.  This was before Lyme disease in 2003 and near death from Rocky Mountain Spotted Fever in 2005.

I got over being tired after that training.  The doctor, who is a homeopathic physician, told me to rest and drink fluids with electrolytes.  So I did and after a day or two,  I could run with the best of them again.

Without the label of fibromyalgia, I am a person who has severe problems sleeping.  I never get good sleep.

Without the “label,” I am a person who sees days where taking a shower wears me out.  I get all nice and clean.  I get dressed.  I fix my hair.  Sometimes I even put a little makeup on.  Then I take my shoes off and fall on my bed from sheer exhaustion.

Without the label, I am a person who cannot live an active life.  Some days I’m a person who spends the day in bed, not sleeping, too tired to read, too tired to move, who just lies there like the living dead.

Without the label, I am a person who strives to make it through one trip to the grocery store and 98% of the time I can’t get all that I intended to get.  I could if I used one of the riding carts or whatever they are called, but I’m not there yet.  I’m not at a place in my mind where I feel I’m ready to reveal to the public how disabled I am by FATIGUE.

Without the “label” I am a person who hurts when I take wet clothes out of my washer.  I am a person who hurts when I push a vacuum cleaner.  Many days, I’m a person who feels like a plastic bag weighs ten pounds.

Without the label, I am a person who gets so tired that my brain seems to collapse inside my head.  This is called, brain fog, but some people can’t take labels.

Without the label of brain fog, I’m a human being whose brain stops functioning and I have a hard time adding 2 + 2!

Without the label, I would be quite confused as to what the hell is happening each and every moment I live!

Too tired to say how tired I am of people who don’t know squat about what it means to live with Chronic Fatigue Syndrome and the pain of fibromyalgia.

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Image of ferns by, “The Graphics Fairy”

I chose the image of the fern because even plants have labels.  I stand on both sides of the fence, or perhaps I’m the FenceSitter, regarding the use of labels in medicine.   Labels are useful but can be abused.  Labels can be used to identify a whole person and I believe, those of us who have an ongoing health issue, illness(es) or disease(s), know that we are more than a label.  We remain fully human.

Thank you for visiting my blog.



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?