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.



Just in time again

Several days ago I’d placed the bill in the center of my desk, clearly visible without any surrounding clutter.   August 6th.  I had the number planted in my brain.  No biggie.  All I have to do is make a quick call to my agent’s office and the bill is paid.

Apparently though, it is a biggie.   Everything is lately.  I can’t concentrate on one subject very long, particularly bills.  The act of paying them makes my gut get all twisted and gives me anxiety.  It also makes my brain feel like it’s being squeezed.  I get nauseated and dizzy.  I go lie down and think maybe in a few minutes I’ll feel better and can pay the bill.

The best of a week passed and I kept trying to pay it.  I did call once and for the first time the number was busy.  I called back and busy again.  I went back to bed for a little while.  I don’t like going to bed during the day.  At least not regularly when it’s because I’m sick.

I like lying in bed on a cold winter’s day reading a good book.  I like to take naps when it rains or an afternoon spent enjoying the sweet company of love, but I don’t like this business of having to lie down every little while because I’m too tired to do things and too tired to think.   I have things I both need and want to do.

I woke up with anxiety today.  I sat down at my desk immediately realizing it was the fifth.  I remembered I needed to pay the bill.   While having my coffee I paid two other bills.  Finally, I saw the auto bill.

If it's not too late then it's just in time

too tired but not too late

I’ve been a customer there for over a decade.  I remember when I first went to their office, which is in the mountains of western North Carolina.  One thing I loved about living there was that all the businesses had flower gardens outside their offices.  I also loved the old beautifully restored houses, some of which were commercial property.

Today the agent answered when I called.  I usually talk to his secretary.  He’s a nice man.  I told him I needed to pay my bill.  I made a remark about me possibly being the only customer who waits until the last minute.

He laughed.  “Oh no,” he said politely.  “Lots of people wait,” and I heard him keying in my name on his computer.   “Yes,” he said.  “You have until,” he paused and laughed again, but in a nice way, ” until today.”

“Yes, I know,” I answered and laughed too.  Why not laugh?  I mean partly out of relief because for one thing, it doesn’t say the sixth.  It’s the fifth and that is today!

just in time is alright with me“Well, you’re just in time,” he said.

I couldn’t believe he said it!  That’s my line.  “Exactly,” I said to him.  I was happy he saw it my way.

Horse pills and little angels

she calls me an angel and gives me sweet treats when all I do is what I do best.

“I think dogs are the most amazing creatures; they give unconditional love.  For me they are the role model for being alive.”  ~Gilda Radner

“What’s your pain level?” the nurse asked.

“Nine,” I quickly remarked.  I was too tired to say nine and a half and would have said ten, but that’s reserved for pain that sends a person to an emergency room.  If I hadn’t had a doctor see, then it would have been an emergency.

My blood pressure was high, which for me means severe pain.  The doctor said I needed another round of the horse pills I had taken.

“I don’t know why I feel this bad,” I told my good friend after the appointment.  “It’s a simple bladder infection,” I said, but my whole body ached.

“You started out on the edge of good health,” he gently responded.   “Now your body has to use all it’s energy to fight the infection.”

My friend didn’t have much time to spare, but he made me a wonderful egg sandwich.  It was no ordinary egg sandwich.  It came with such tenderness in his heart, that I felt like the most special person to him in the world.  That right there is healing.

I went home and straight to bed.  My beloved canine companion, little Ruthie, woke me with a gentle kiss on my arm around seven o’clock.  She knows exactly when dinner time arrives.  Ruthie is such a tender dog.  She always asks for what she needs in the sweetest little ways.

Our other dog heard me stirring around and came into the bedroom.  They both wanted to eat and go outside. 

The first thing Ruthie did when we walked outside was spot a rabbit.  Holding her back was hard and it made me irritable.  I raised my voice, which made me feel guilty, but I knew I couldn’t take being pulled by her.   I brought them back inside, fed them and returned to bed.  They both settled on the floor beside my bed, like little angels watching over me.

The dogs don’t sleep in their usual places when I’m sick.  They are more protective of me.  They’re vigilant little guardians.

Living with chronic pain and exhaustion is hard.  Getting sick on top of being sick is depressing.

I decided to rent movies to make it through the next dose of horse pills.  I hoped depression wouldn’t get the best of me, but then I have these little creatures walking on four legs.  They are the best medicine in the world!  Dogs really do rule.

 

Little creatures are great teachers

Dogs can talk and if we listen we can hear what they have to say.

Keeping a safe distance at the dog park

I’ve never met a dog that couldn’t talk but some have a lot more to say than others do.  My girl Ruthie told me just a second ago how much she loves being loved.

Oh she’s the sweetest, and I mean THE SWEETEST 4-legged I’ve ever met!

She talks all the time.  She tells me dog stories.  Mostly they consist of her great insect-hunting adventures.  There isn’t any insect that gets by her, which is at times frightening to me.  She doesn’t say much about the snake I wouldn’t let her kill, which she found underneath my bookcase in the living room.  It was rightfully hers and the animal control officer who I called to come and help me said exactly that.  “You ought to set that dog loose in there.  She’d take care of it long before I could get there.”

No way was I going to set my dog loose to capture that snake!  My friend who has spent a lot of time in Africa ended up coming over, dressed in his Safari hat, which was pretty funny.  He was able to get the snake to exit through my sliding glass door.  He also enjoyed making fun of me for being scared of what he called a little black snake, but believe me, it was not so little.  I guess if you’ve seen African cobras it was little.

I had a mouse in the same apartment as the snake was in until Ruthie came to live with us.  She sat up for two nights straight, just sitting in the kitchen, watching the place where I knew that mouse was.  He, or she, left.  I guess it simply couldn’t find a way out.  Ruthie is as good as any cat.  I never heard from that mouse again.

As to insects, she hasn’t told me yet how she knows where they are, especially in the middle of the night when the lights are all off.  Suddenly I’ll wake up to her running from the bedroom where she sleeps to the kitchen or living room.  I’ll get up and I find her in a corner where she has either discovered or captured an insect.  I can’t figure out if she hears them crawling or smells them and like I said, she has not told me her secret yet.

She’s a great insect hunter with natural eye-liner that gives her a Cleopatra kind of look, earning her the royal title of an Egyptian Beetle Hound.

I don’t know where Ruthie came from before I met her, which was at the local shelter, other than she had been recently returned by a family who had adopted her two weeks before I did.  They had a toddler who was allergic to dog hair, or so they said.

Ruthie was certainly shedding when I first met her.  Within an hour of her being inside my home the floor was nearly covered in dog hairs, which comforted my grieving heart.

I’d lost my Free girl only six or seven weeks before I met Ruthie.  Free is the gorgeous black lab in my post, I AM FREE.   There were still some of her hairs in the corners of my living room.  I had purposefully missed those spots while vacuuming shortly after she had to leave this earth.  I tried to keep any  reminder of my girl around for as long as I could, especially her scent.  I missed everything about her.

When my apartment began to have that kind of house smell that comes with homes without dogs, I felt like it was sterile and empty.  Lifeless.

A house without a dog is a sad lonely place to me.  I learned I definitely don’t like it.  I found myself downtown helping homeless people at strange hours of the night.  I’m really not cut out for that.  It isn’t my passion.  It was however, better than returning to a home without my beloved Free girl.

The first day I got Ruthie I couldn’t wait to show her where she would be living.  I knew she would like it better than that dirty shelter.  She was totally psyched!  She knew it was her home too.

Ruthie knew I was her new owner as we walked out of the shelter.  I didn’t know at the time she had most likely been abused and the shelter couldn’t tell me that information.  I would soon learn that she was scared of people until she knew if they were okay or not.  She was scared of just about everything, except our other dog, Tiny.  Looking back to the day I adopted her, knowing now how scared she was of the world, I’m happy to know that she jumped into my car as quickly as I had opened the door.  The look on her face said let’s get the heck out of here.  She didn’t look back as we drove away.

I needed a shower after the several hours of the adoption process, which had included a trip to my favorite pet store to get her a few toys and of course, I wanted to show her off to the owner.  I was quite proud of my new friend.

She barked at the entrance to the bathroom and ran in circles the entire time I showered.  While I dried off she was calm.  I walked into the living room and saw where she had enjoyed a bit of wine tasting from a glass that was sitting on the fire-place hearth from the night before.  Then I noticed a pack of cigarettes, lying on the middle of the floor, completely shredded.

Ruthie looked quite proud of herself.  She was lying right beside of the tobacco strewn across the floor with the same look Free had the time she brought me a dead bird as a gift after I scolded her one day.  I know… that poor bird.

I had a suspicious feeling that someone had taught Ruthie to shred a pack of cigarettes.

The next day it happened again.  She barked at the shower, ran in circles, and got quiet while I was drying off.  There she was again, lying beside of her destruction and again, with a look of pride on her face.

After only a couple of days the shedding and shredding stopped and I’ve had her four years.  I think she’s allergic to toddlers and that was why she was shedding so much.  She’s still scared of all people less than about four feet tall.  She urinates and then lies on her back when she sees a little person.  I never let her get close so everyone stays safe.

A scared dog is a dog that might bite.

Free always showed me how I needed to be.  She showed me what it was like to be free.  She really did live up to her name.  She was a sweet girl too.  Mostly Free was happy.  That’s what everyone who met her would say, “That is about the happiest dog I’ve ever met.”

Ruthie is different from Free.  She shows me who I am.  She shows me how I am.  She shows me how I feel.  Everyone says, “What a sweet dog.”  One woman who met us said, “She is your tender heart isn’t she?”  I realized she was right.

Ruthie has such a tender heart that if someone gets upset, especially me, well, so does she.  The first signs of her being upset are revealed in her gut, just like mine.  She was diagnosed with Irritable Bowel Syndrome not long after I got her.

A couple of days ago Ruthie had blood literally pouring from her rectum.   I immediately called the vet.  After several tests the doctor said she believes Ruthie was responding to stress.   The vet said some dogs who get boarded there have this same reaction.  I was certainly glad to hear that Ruthie is okay, but it made me sad to know that my getting upset earlier that day had apparently caused this reaction in her gut.

I can’t protect her from life.  I try hard not to let her know when I’m upset, but she knows anyway.  She’s much better now.  I played with her, rubbed her silky coat, and basically showered her with hugs and kisses.   We are both better now.

Ruthie is a teacher, just like Free was.  She teaches me to calm down.  She shows me when I’m getting too upset and my love for her makes me want to feel better so that she will.  She shows me about forgiveness too.  She loves my son, no matter what.  She wants peace.  Most dogs do I guess.

Ruthie shows me what stress does to the body.  She shows me myself.

Free would show me how I could feel differently if I would only follow her advice, which was to go outside and play with her.  If I didn’t listen she would get a ball, usually a dirty one, and toss it in my lap.

Free would fight too, although the times were few and I was always there to stop her.  She would fight over tennis balls, sticks, toys and for sure, food.  I had to keep a close eye on Free.  She would slip off every chance she got and she got better at this with age.  She’d hide behind a tree while I worked in the garden, staring at me as if I couldn’t see her.  I’d play along with her, but if I went more than two minutes without looking she would be gone.

Down the winding paths she would go and in the mountains a dog’s route is faster than a human’s is.  Sometimes I’d have to get into my car to go fetch my dog.  She knew every house in the neighborhood that lived a dog.  She would go into their yards, especially during the day when the owners were away and the dogs were in the house and steal their toys.  If I caught her doing it she would have the toy in her mouth, her head would drop and she looked pitiful.

Free had a strong spirit.  If she had been human then she would have been an activist who gets put in jail from time to time.  She fought to protect what was hers, what she believed in and what she wanted.

Ruthie is not like that.  She is a tender heart.  She doesn’t fight and instead gives and walks away.   She has shown me once that if a person does something that seems intentionally harmful to her that she will protect herself.  Otherwise, Ruthie is sensitive, extremely loving, funny and has a cautiousness about her that I consider a smart trait, one worthy of my attention.  If she was a human she might be a nurse.

When we go to the dog park she gets a little scared, but she also loves it and runs the other way if I say let’s go.  She keeps her distance from the other dogs.  Ruthie likes to walk around the edges of the fence, which is a good distance from the center of the park where the dogs play together.  She’ll play if she finds the right dog but she’s choosy.  She likes dogs about her size or a little smaller.  She freaks out when a pack of dogs surround her, even though they are usually smothering her with kisses.  Even the dogs know Ruthie is the SWEETEST one in the park!

Free loved the dog park too, but she liked the tennis balls better than the other dogs.  She would gather as many balls as she could get, put them in one big pile and then plop down on top of her collection, daring the others with her growl to come any closer.  The other dogs fortunately did not challenge Free, probably because she could never get all the tennis balls.  She sure tried though.

Ruthie is my little drop of heaven.  I believe Free kissed her from heaven, which is why Ruthie’s snout is black.  She was kissed by an angel.

I’m so glad that child was allergic to my girl Ruthie, who is now, Ruthie Mae.

My dog can talk.  She just told me that she doesn’t care much for the time I spend on this computer.

Little creatures really do make good teachers.

In disability and poverty

by Dan Smith, Wikimedia Commons, CC Attribution-Share Alike 2.5 Generic

“I can’t hear myself think,” my mother would say.  “Ya’ll hush up,” or sometimes, “Turn that noise down.”   Whatever, “noise,” it was, we turned it down.  Sometimes it was my sisters and I cutting up or maybe it was music, but when my mother spoke, we listened.

My mother pointed her finger at us when she was mad, which usually put a stop to any misbehaving on our part.   Testing her was not wise, but I guess like all children do, sometimes we abandoned our fear.

She only had to remind us one time to look on top of the refrigerator, at least in the Summer, where we could often see a switch lying on the top.  If there wasn’t one there, then one of us had to go out and pick one.  We had to pick three to make sure we got a good one large enough for switching.

“Don’t come back with a skinny one or I’ll…”  I don’t remember anymore what Mother said she would do.  I think she always said she’d switch us twice.   She grew switch bushes, which I would finally learn are Forsythia, also called Yellow Bells.

Switching us wasn’t the only reason Mother had for growing switch bushes.  It gave her a desperately needed bit of privacy from my father’s mother’s hawk-like watch from her front porch.  Mixed in with the Forsythia were Redbud trees, which eventually did protect my mother from my grandma’s invasive view.

I only got switched once and I didn’t deserve it but then, neither did my sisters.   None of us owned up to the misdeed, since we really were innocent, so one by one, we each went into the bedroom and got the switch.  I was five.  I was not as willing as my older sisters were.  I was much more rebellious.  I made my mother chase me around the house outside about ten times before I finally had to give in and go inside.  She couldn’t catch me so she told me the longer I stayed in the hiding place I’d found, the worse it would be for me.

There was a time later when my mother thought I deserved a spanking but it wasn’t switch season.  She asked my dad to use his belt.  He took me into the back bedroom at which point tears began streaming down his eyes.

“I can’t do it,” and he called me by his nickname for me.  “You are too sweet,” little dogkisses.  You don’t deserve this.  Can you just cry and tell your mother that I spanked you with the belt?  Tell her I gave you two licks.”  I shook my head yes, which is exactly what I did.  He had added, “Just don’t do it again okay,” and I didn’t, whatever it was.  I don’t remember.

Our family was somewhat dysfunctional.

I’m sure there are people who could find ways to say the dilemma I’m in now might stem some from the switch bushes my mother grew.  I dare say though that there were much worse things we had to deal with than switches, which I’m sure gave birth to my having a few emotional challenges in life.  With that said, I try hard not to blame my parents for my life today.  It’s a personal choice I made in my late thirties.

My dad passed on when I was only twenty-five years old and my mother is seventy-five.  My heart tells me to do the best I can with the years left that I have a mother, so that’s what I’m doing.

Perhaps I’ll come back to this writing one day and see how the switch bushes or my recalling this part of my childhood relates to me not knowing what to do about my current problems in life, but as I write, I don’t see a clear connection.   I don’t know why these memories return to my mind on this day when I can hear myself think.

I know how it feels to need to hear myself think, or rather want to hear it.   I don’t know if it does me that much good to hear my thoughts too much of the time.

One thing I hear clearly and often is the thought, I don’t know what to do. Not only do I hear myself thinking it, I hear myself saying it out loud.

Talking to myself, out loud, scared me until one day I heard an NPR show on self-talk.  Apparently, this is quite common and is I guess, one of many normal responses to intense and ongoing stress.  Sigh!  What a relief I thought.  I love it when I hear that my craziness is normal and common.  I remind myself of this if I start talking when I’m home alone.  Plus, every time it happens, I am under a lot of stress.

Some days, like today, I hear the thought until the day is finally over.  Some of those days I get a few things done and some of those days, I don’t get anything done because, I don’t know what to do, or rather, I think that I don’t.

Today I had the thought (and spoke it out loud — to myself) with my first cup of coffee.  Then immediately, I thought well, why the hell don’t I know what to do?  I’m closer to fifty than forty.  When will I know what to do!  Or do I know and am just not doing it?  Like writing in this blog.  Is writing what I’m supposed to do I wonder or am I avoiding doing by writing?

I want to write but I need to do a million other things, like call the hand surgeon.  I keep putting that off.

There are lots of things I could do and some, like calling the surgeon, is something I’ll eventually have to do.

I could write a letter about how my son should have graduated from Community Resource Court.  I’ve put that off a long time.  He didn’t graduate because his psychiatrist wrote the judge a note saying he had not taken the antipsychotic she had prescribed for him.  He had taken it but his family physician told him twice during that time to stop taking it and to never take any kind of antipsychotic again due to poor liver panels while my son was taking the medication(s).

He attended the court for one year and did everything they asked of him, except for one thing, which was to continue taking the antipsychotic.   The psychiatrist who had written the note was gone fishing the day he should have graduated.  It isn’t the first time she’s been fishing during an emergency and the ACT team she works with doesn’t have a back up psychiatrist when she goes on these trips where her cell phone doesn’t work. She had told me to fire that doctor anyway.  They sent my son back to criminal court.  I couldn’t believe it.  I think it’s an injustice and I doubt my writing a letter would do much good.

The judge asked me to stand up.  My son had been charged with possession of,  “half of a marijuana cigarette,” and as a result,  landed in the county jail for 28 days!  He had attended CRC for one year, and so did I.   None of that mattered though.

“Do you think your son is competent to understand this charge?”  the judge asked.

I can’t speak fully to what my son thinks about his charge.  I would be betraying his privacy.

What if I had said no?  That would have meant a judge’s order for a psychiatric evaluation, which would have meant an involuntary commitment at our state hospital, which is unstable and as a result, dangerous.  My saying no could have caused him to lose his rights, get locked up in that place until some really crazy doctor decided my son was rehabilitated.

“Yes,” I answered.  “My son is competent.”

His gavel came down and the day was done.  My son was charged and free to leave, which we did.

I could write about the injustice of…

Sigh…  There are about ten letters I feel like I need to write about injustices regarding my son.

Then of course there is me and my life.

I could write a letter to the teaching hospital where I receive most of my health care.  I could ask them if they would offer their, ‘charity care funds,’ which I qualify for, to pay their acupuncturist.  Four of their specialists have written me prescriptions for acupuncture, due to my sensitivity and adverse reactions to certain medications, along with a family history limiting my choices in the treatment for some serious health issues I have.

I could write a letter to my family doctor asking for Home Health services or be brave enough to finally ask for a handicap sticker for the days when I’m too tired to walk.  There are many days when I’m too tired to actually walk into the grocery store, much less walk around and shop.  I’ve gone to bed hungry a few times because of this, but not for too long.  I manage to keep up, obviously as I’m alive and writing, but sometimes, I’m hanging on by a thread.

“It makes sense,” my doctor said, after I asked him if people with fibromyalgia and/or Chronic Fatigue Syndrome qualified for any home health services.  He said he has never known anyone with these illnesses to ask for these services.  I wasn’t surprised but I’m quite curious.  Chronic Fatigue Syndrome kicks my ass.  It puts me down like a sick dog!   Why haven’t these intelligent well-respected medical doctors considered the notion that CFS and severe fibromyalgia patients might need some home health care services?  I wonder too why we, the patients, haven’t inquired about these services.  Are we ashamed to ask?  I’m ashamed to ask for a handicap sticker, even though I know I deserve to have one as much as anyone else does.

I have dogs and I feel like people will say if I can manage to take care of them then I must be able to do everything else, but this is not the way it is.

I’ve been blessed the past several months with neighbors who are helping me walk my dogs regularly.  After two accidents I don’t know what I would have done without their help.  I can take the younger dog to a nearby dogpark and sit on the bench while she exercises, but sometimes I’m too tired to drive there.  Our older dog is anti-social.  Can’t take him to dogparks!

In between my trying to figure out what to do today, I went online and visited a site about invisible disabilities.  It was wonderfully resourceful focusing on educating and informing people about how they can better understand and support a friend, family member or loved one who lives with an invisible disability.

I could send my family one of their brochures I thought, but then I thought better of it.  Here sis or bro, here is a way you can be more kind to me.   I don’t think so.

I could go through all the bills.  Bills I can’t pay.  Put them in a shoebox labeled unpaid and can’t pay, then store it in the closet.

I could call our MD and tell him my son is not doing so great, but what could he do?  I could call the housing specialist.  I could call the corporation who just bought all the properties around here that used to be owned by non-profits who rented to low-income people with disabilities.  I could tell them I’m still waiting  on getting all the paper work they’ve asked for.

I could call the federal weatherization program who would insulate my apartment, which would lower my power bills.  I could call the Catholic Social Services and ask if they might offer a little towards some of my utility bills — if I could find their phone number.  I could look it up in the phone book, if my brain worked right.

I could call my landlords and ask them to do some things they’ve promised to do but haven’t done.

I could call and cancel the doctor’s appointment I have at the ENT clinic.  I mean why am I trying to get help with my ears, while my disfigured finger hurts, I need new eye glasses and what feels like a million other things that I need to do?

Then, I recall the reason I called the ENT clinic.  Some days I can’t hear myself think because all I hear is ringing in my ears.  Aside from the ringing I can feel noise.  I’m hyper-sensitive to sound and sometimes it hurts.

Oh!  I know what I could do!  I could pay my auto taxes, get the receipt, oh wait!  I’ve got to have my car inspected before I can get my tags renewed.  Great ’cause the check engine light is on again.  It’s been on since my brother-in-law sold me the car four years ago.  I’ve spent hundreds of dollars every year getting it to pass inspection, and the engine light just comes back on.

I could call him and tell him to fix my car!  “It won’t be a problem,” he’d said.

There’s the power, the lights, the phones, this internet connection, two loan payments, a water bill, taxes, inspection, tags, gasoline and blah, blah, blah.  Oh yeah, food.  I forgot about that.

I bought food the other day.  I felt guilty for buying food!  How will I pay the bills I thought?

I did get one bill paid today.  I didn’t cancel the doctor’s appointment, which I don’t want and desperately wish I hadn’t made it.  I’ve canceled many of my medical appointments over the past year or more.  I managed to get my son an appointment with a private doctor who I know and trust.  This gives me a little hope, but I’m used to things blowing up in my face, most things in fact, so I don’t let my hopes get too high.  I did do things that needed doing today.  I was a mother, actively, for a little while.  I washed the dishes.  I did a lot, along with agreeing to more than I wanted, like providing transportation for a job the ACT team promised.

Mostly, what I do is try to manage the anxiety about all that I need to do, while feeling quite confident that I can’t get it all done.  I’m beginning to wonder if I’ll ever get some of these things done.  I managed to sit outside in the shade and organize two baskets of mail.   Now, the bills are neatly stacked, and I guess they’ll stay that way for a while.

Still, there’s anxiety.  There’s so much I feel like I need to do.  Some things I can’t do but I can’t not do them either.  Some things I could do if I could concentrate or feel what I have to feel to get certain things done, such as writing about the psychiatrist’s fishing trip.

I know what I’d like to do.  I’d like to go camping like we did every summer when my son was growing up — when I had lots of energy — and more money.

I’d like to sit high on the mountain, at a nice campground of course, with a really nice mattress to sleep on, which I have, and I’d like to stay there until the heat has gone from this place I call home.  I’d like to wake up to the sun shining through the trees on my tent, drink lots of dark coffee, listen to the sounds of nature, rest, read, rest more, eat, lie on my back and watch the night sky and then, rest more.

I don’t know what to do, I heard myself say right before bed.  Today, I sure could hear myself think, all day, all too clearly!


Photo by Dan Smith


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.



Warrior Women with Blogs Award

Dear Rosemary,

I am absolutely delighted that you chose me as one of your recipients for this ‘lovely’ award!
Your ability to give support, encouragement and friendship, even as you are struggling is a special gift.
Your thoughtful and funny comments have brightened my day many times.   In your words I  feel your compassion and empathy.

Thank you,
Dogkisses.

Rosemary’s health blog: Seeking Equilibrium.

I am passing on this, ‘Lovely Blog Award’  to blogs written by Warrior Women.  Women who are carrying on in spite of illness and disease.  Also, to the warrior women who are dedicating their time to a blog that offers education, support and healing  for victims of domestic abuse and violence.

You can visit The ‘lovely’ blogs’ who are receiving this award by clicking the provided links in the list below.

My Foggy Brain –  I’m passing this on to you.
This is a blog by a creative woman living life with fibromyalgia, and like most of us, other illnesses as well. She shares how she manages to find joy in crafts and the love of her family, including her 4leggeds.

I’m a little biased because myfoggybrain is one of the first people I connected with and she continues to leave me very nice comments.   Aside from my personal regard, I find her blog inspiring and if you like crafts, such as scrap-booking, papercraft or making cards, then take a little trip over and visit her blog.

Thank you MyFoggyBrain


Victoria at Walking on Eggshells, I present this award to you.

This is a blog written by a mother who is brave and strong.  She tells us honestly and candidly of her experience raising a son  challenged with a mental illness.

Victoria carries on and walks forward in the face of circumstances that present her with a life of living moment by moment.  Revealed in her blog is her appreciation for the precious peaceful moments in time.

Thank you Victoria.

CZ at The Narcissistic Continuum, I present you with this award.

This is a blog that takes me into a peaceful place of healing and learning.  CZ is a gifted writer, experienced and educated in her subject.  Her blog offers creative and fascinating metaphors, along with well-researched facts to educate people about Narcissism, along with offering support for victims of narcissists.

I have personally found her articles life changing.

Thank you CZ.

Leslie Sigal Javorek, at IconDoIt, I present this award to you.

Leslie is a talented artist, which you will see if you visit her blog.  She creates awesome free icons and they aren’t you’re average icons.  They have interesting stories and tales and imagination behind them.

Leslie also lives with a terminal illness — and LIVES she does!  I am personally deeply inspired by her positive attitude towards living.

I am among those, both cursed and blessed, stubborn as hell and determined to survive.”  Leslie Sigal Javorek.

Thank you Leslie!

jeneli, at Almost Normal, I present this award to you.

This is a blog written by a young woman who lives with several serious ‘invisible’ illnesses, one of which is fibromyalgia.  One of the things I always remember about her is that she must take a long bus ride to see her doctors.  That one thing would wear me out!

Because I don’t look sick, and don’t always need mobility aids, people tend to assume I’m in perfect health–that I’m perfectly ‘normal.’ ”  jeneli

Thank you jeneli!

lostintranslation, “An Impetuous Buffet of Loving Indulgence” — I present this award to you.

This is a blog written by a woman who loves to write, which I very much appreciate.  Some of us just have to write. She has a  refreshing youthful spirit and questioning mind, the latter of which seems to get many of us a bit, ‘lost in translation.’

I am just a girl who loves to write…..in circles…in squares….in the margins…on fresh sheets of notebook paper…on hotel stationery…in different colors…in cursive or print or Word…on napkins….on your soul…from my heart.”  lostintranslation

Thank you lostintranslation!

“Mo,” at Mo is blogging…I think, I present this award to you.

This is a blog written by a woman living with multiple chronic illnesses.  Mo writes frankly about the pain and fatigue living with these illnesses.   Her blog also reveals her gratitude for family.  She has found the love of her life, (who I wish had a single twin!).  Surely, it’s a blog worth visiting!

Thank you Mo!

To the recipients:

You can decorate your blog with your award, or you can simply stash it into your box of goodies, where you may go when you are worn down and need little treasures — things reminding you that you are not alone. Or, simply, just to let you know that one person appreciates your work.  I believe our blogs are very much a part of our work in this world.

This award is a way to say thank you to another blogger, or your favorite blogs.   You may present this award to a blog(s) of your choice by posting it on your blog and giving a link to the blog(s) you awarded, along with a little about why you chose the recipient(s).

To see more clearly than my foggy brain can tell you about accepting this award, please go see Rosemary here.

A note as to creating this list. At first it felt a bit daunting.  I was too tired.  Brain fog had the best of me.  I can write a post without too much thinking involved.  I hope that doesn’t sound like I don’t care about what I ‘post’ because I certainly do — but in general, writing a post is a relatively easy task.

I wondered if my giving an award would cause you to feel obligated to post it on your blog, which is why I mildly modified the, “criteria,” and again, I’m trusting is okay by Rosemary.

As I worked a little on this post, now and then, it gradually became an insightful and enjoyable experience.   I’ve learned a little more about each person through the process of describing her blog.  I’ve been reminded of my gladness over stumbling upon and having the honor to communicate with these women.

Thank you Rosemary, for the gift, and the ensuing inspiration of this post.

Mom says thanks!

Tiny here! I know, I'm cute.

Dogkisses.

kamama, Cherokee for butterfly

dreams of being in a cocoon and then, I was a milkweed!

Monarch Cocoon

Kamama, Cherokee for butterfly.

I once dreamed I was almost a butterfly– almost. The dream was ridden with  anxiety.  I felt trapped.  I wanted to be free but woke up before that happened.  I was glad to be out of that dream.

Shortly afterward I dreamed I was a milkweed plant.  Now That was an awesome dream!

dreamed I was a milkweed plant -- I was free

Milkweed in seed

I had several Milkweed pods in my freezer when I had these dreams.  I was studying and preparing to start a business planting butterfly gardens, which I did the following Spring.
It’s hard to describe the way I felt dreaming I was a milkweed plant.  It’s been many years and I still remember.

As a milkweed plant I could feel the process of pollination.  I knew that part of me was being blown by the wind around the field and touching the other plants.  I felt connected.  I felt healthy.  I felt free.

The life stages of a butterfly remind me of  starting and maintaining a blog.
The connections I’ve made with other bloggers is a similar experience to the way I felt in my dream of being a milkweed plant, which is a feeling of being connected.  There is an interdependence going on when we are writing our personal stories.  One person’s words touch me, my words touch someone else and then another might read a comment or find a link to yet another blog and it all goes round and round.

Like the wind in my dream carrying a part of me across the field of milkweed,  our written words travel across this place where we share our stories, giving birth to new growth in the form of knowledge and friendships.
kamama, Cherokee for butterfly, cocoons, milkweed and dreams of being free
“– a gift to my people the Cherokee, who honor the butterfly, kamama, in their daily lives as they honor and respect all things in the natural world.”  Geyata Ajilvsgi.

Resources:
Please click on the below links for specific copyright information.

Wikimedia Commons, File: Monarch Butterfly Cocoon 2.jpg,
by Greyson Orlando.
Wikimedia Commoms, File: Milkweed-in-seed2.jpg,
User Mdf.
IconDoIt, the blog, Butterflies are Free” by Leslie Sigal Javorek.

Butterfly Gardening for the South, (Absolutely my favorite book on planting a garden to attract butterflies), by Geyata Ajilvsgi, (Introduction, pg x1)

All content in this blog, including text, images and external links are subject to a Creative Commons Attribution-Non Commercial-Share Alike 3.0 US license.  See Terms of Use in my sidebar for more information.
Thank you for visiting my blog.