sharing my life experiences, reflections and insights as a mother, a writer, an Occupational Therapist, an unschooler, and and a spiritual being having a human experience

Posts tagged ‘writing’

I want to break free

Queen inspires this post

I want to break free of old patterns.

Of old ways of surviving

I want to return to thriving,

To living life rather than getting by

I lived in a world of highs and lows

I lived in a world of depression and hypomania

I learned to survive that way

I pushed through the depression and got through the days

I thrived in hypomania, found my true self and prospered

I knew even when I feel, that I could bounce up again

Now we have taken away the upswing

“You are high functioning with depression”

that is w hat my doctor said

Maybe if you compare me to others

But to me, I feel barely alive with my depression

I feel like I am struggling to get through

I may look like I am functioning

But am I?

Is spending hours each day on phone app games and streaming tv functioning?

Missing appointments and not following through with phone calls from doctors

Wanting to exercise but not doing it

Wanting to engage more with my family, but not managing to do more than discus television shows

Making a step forward every once in a while

And then not making steps forward for a while

Being emotionally withdrawn even from myself

Not writing

And not doing what I love

To me that is

not functioning

I make it to work, most of the time

Until I get sick and getting better is extra difficulty

I eat meals and manage to be sure everyone get fed, with my husband’s help

My husband helps a lot…

Grocery shopping, cleaning, home maintenance, getting kids to places, taking care of our pets

Growing our new business and continuing his practice

Today, I made a phone call.

I got a hold of my son’s doctor to straighten out a prescription.

I have many more things on my to do list

My should have gotten done weeks ago…list

I need to take it one small step at a time

I made that phone call this morning

It was even still morning

Tomorrow, I can make another phone call.

Tomorrow, I can write another blog

Maybe I can write my way into a new life

Nothing else has worked long enough to keep me going more than a few months

I can try this

I can write

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Raising children and recreating myself

It is not easy to walk a different path.

We grow up with expectations of what life looks like and how it will look in the future. And then the future happens, and it is unexpected. One decision leads us down a different path than we could have ever imagined.

Our children come to us, with their own path.

We have to step out of our expectations and avoid putting our forgotten desires onto them. We have to forge a new path in the uncharted wilderness of life. We make mistakes and step back and acknowledge our mistakes to ourselves and to our children.

Our example is our greatest lesson for them, even when we aren’t looking.

Reflection is important in every step along the journey. Our children are recreating themselves into who they are and the more we can allow them and not put our expectations onto them, the less digging out they will have to do as adults.

Recreating ourselves while raising children and juggling life responsibilities presents challenges. No matter who we live, life presents challenges. It is how we face the challenge that matters, not the end result.

Being strong means sticking with life even when it seams easier not to.

My faulty coping strategy is avoidance.

disappearing into mindless games, distractions, television, Netflix…

Sleeping

Illness

It is funny because I thought I had moved past the physical illness overtaking me when emotionally I couldn’t cope. I used to have frequent infections and visits the doctor often. Until I found natural health, chiropractic, acupuncture and Eastern medicine, Naturopathy. I moved into going to the doctor less, improved my diet and added supplements. I think this worked well while I was exercising regularly.

I remember even using exercise as an avoidance tool. I used to spend 30-60 minutes walking and then that much time after stretching.

How do I bring that habit back?

I have made effort and have gotten into a morning exercise routine for a short period of time, days, or even weeks of more regular exercise and then it ends.

I think I have lived for so long with the up and down swings that I am finding myself lost knowing how to live without those swings. I think I had come to depend on the upswings to pull me through and propel me forward and so the next downswing, I would still come out ahead of where I was.

I am on a mood stabilizer now and have not had an upswing in some time. About 8 weeks ago, I was just below normal, or that is how I described it to my psychiatrist. She likes to use wave analogy, drawing wavy lines on a board to show my mood swings.

It is really more than mood swings. I would call it, waves of function, dysfunction. Or low function and high function.

So after years of swinging and coping with this pattern, now I have to figure out how to live a different way.

Hmmm…

figuring it out, somehow

One small step at a time

One post at a time

Today: pushing forward with gratitude

I am grateful for…

Making mistakes

Sticking with my new doctor

Patience

My job

Quiet time alone

Music

My family

My husband, Don, the amazing man he is

Cats and kittens

New things in our life

Supportive people

Friends

Supportive friends

Options

A really yummy salad

New location to have my time

Shifting gears

Trying

Nice spring weather,

A cool breeze

Abby trusts me enough to call me with problems

She reaches out to me when she needs help

Our wonderful veterinarian

Sunshine and Shadow and

The joy those adorable kittens brought to our life… all of us

Thinking about something besides myself

Don helping me when I need it most

Don, taking care of things when I can’t

typing

Writing

Trying

A walk

Fresh air

New yard and working septic system

Shit going where it is supposed to

Opportunities

Business coach who gets what we do

New opportunities

Patience

Doing the work

Moving forward, no matter than pace

Making strides

Opportunities to speak

Planning

Approaching 25 year anniversary

Don in my life for the past 8 years… life could have been so different

Don has been here the past 8 years.

Stopping to really think about that

I can’t really get my head around that fully… what could have been…

Moving forward

Trying

Doing my best

I really am doing my best in each moment

I am doing my best

I am doing my best in each moment

I am doing my best in each moment

I am doing my best in each moment

Conviction of the Heart

Kenny Loggins sings…

Where are the dreams that we once had?

This is the time to bring them back.

Writing

My dream has always been writing

Writing stories,

Writing about life,

Writing about parenting,

Writing about unschooling, child-led learning

There has been book inside of me for a long time

More than one book…

Having a writing ritual

Making writing a priority

Making time daily to write

The challenges of…

Everything else!

Life demands my attention in so many ways

Getting in the routine and making it a habit

Writing

My soul calls out for me to write

Months go by

With a blank page

Desire to write,

Intention to write

Time to write

So why don’t I write?

Focus

Less than an hour to myself

Time to write

What to say?

Ideas swarming like bees yet not landing

…on a particular flower

Just pick a flower

There are so many types of flowers and what is the name of that one kind…

Does it matter?

Am I now writing about flowers?

Maybe…

Carnations, roses, petunias

I like petunias

But have trouble getting them to grow

I love their tubular bloom and all the colors they come in

They grow up and out of the pot like ivy

Spreading their growth out into the world

Chaotic like wildflowers yet the bloom is very defined

Or maybe I am more like a. 4 o’clock

They also grow on vines, wildly, and the bloom only opens late in the day and then closes again

I have my moments when I let myself shine and open my voice to the world and for the rest of the time, I remain closed,

waiting

Holding back my beauty

Holding back. my wisdom

Holding back my inner voice

She’s a late bloomer

Never thought about myself that way before

Yet, maybe it fits

There is so much within me

So many things I want to share

My blog is my stage

the keyboard is my microphone

Music streaming through my wireless earbuds

Music guides me within…

Dreams

I have a reoccurring dream where I struggle to be heard

I literally am trying to speak but my voice is not projecting

No need to dig deep to discover the meaning of that dream

I am a writer

Saying that feels bold

I have always been a writer

From the age of 10 whenI received my first diary

I have pages and pages of the last 39 years of my life

The story of my life is contained in notebooks on my closet shelf

If I could only live my life with my headphones on blasting music

Blasting me back to myself

Loud music quiets the ego voice,

The negative messages

The doubt

The inner naysayer

Music makes me rise to my higher self

I distinctly remember…

..wanting to be a writer and thinking,

“I do not have enough life experience to be a really good writer”

We speak unto the universe and our wish is granted

I was a young adult when I said that

When i had that conscious thought about myself

Not sure if I was yet a mother

I was young and felt my life lacked the chaos that creates good writing

Here I am all these years later

At the age of 49

And now I know

I know

I know that I know that I know

All of these life experiences that have come to me…

The life that i have been living for the past 21 years…

I now have so many experiences to draw from

I don’t know where to begin

Or how to focus on one aspect

And not get lost

Not get lost in the emotion of it all

Step outside of the experiences long enough

Long enough to reflect

To write

To be

Who I truly am

Focus:

I am a writer

Words Not Spoken: 6 months after his heart attack

Powerful writing from November of 2011, 6 months after my husband’s heart attack.

His heart attack was May 4, 2011 and I wrote this 6 months later the week after he was finally discharged from outpatient cardiac rehab.

It was the beginning of recurrent bronchitis that lasted for over 6 months and then I suffered a car accident and the wheezing was present as the medics checked me out on the scene of the accident May 26, 20112.

I left this post as it was to show my mental state as I typed…

The original title was:

What I need to tell the head of Case Management (at Presbyterian Hospital)

You gave me a case manager who listened to my story. She sat and listened and heard me out when I was looking for help early on in the process.  Yet this same person who sat and listened, told me she would follow up on several things and get back to me and she never did.

She also told me things that are not true. She told me we would have been better off with no insurance because then someone from social services would have come and helped me fill out a Medicaid Application. Well part of that is true, someone might have come and done that had that been the case. But what she failed to tell me was how important it was to file for Medicaid right away and she failed to tell me the simple rule for NC Medicaid that you can’t have more than $3000 in money at the end of each month (after paying bills)…that is the best I can describe the “law” not having seen this any where in writing but only after finding out months later that because we had IRS tax refund money in our checking account, it disqualified us from Medicaid until the money was effectively gone.  We lived on that money for several months to pay our basic expenses while my husband nor I was working.

I am just warming up. That is just the tip of the iceberg at their lack of discharge planning and family education and effective “case management”.

Or maybe that just means that they have brief cases that they carry around and take care of.  Do I sound bitter and resentful?

Hell yes!

I have every right to be because I

I AM A HEALTHCARE PROFESSIONAL

My job as  healthcare professional is in part to assist people with being ready to return home or to whatever setting they are returning to and to ensure they will have the assistance needed when they return home.

Ok

first things first

Our lovely Case Manager

who so comforted me in my time of need- but then failed to follow through-

(I am trying to see the positive here)

She then comes to us very late in the day, after the doctor discharged him around 10 or 11, after we inquired and then the nurse got to us, right after lunch I believe.

Mind you, the only help I had at home, was my mother who had been at my house all week, returning after being with us the initial 3 days until my sister-in-law arrived.  My mother was tired, she had been taking care of three intense children and my episodes of panic or crazy blood sugar due to insufficient nutrition- or whatever it all was- stress

So, we have spoken to the doctor and the nurse for discharge and the nurse keeps informing us that we are waiting for the social worker.

I must add that a few days prior, I had called for the social worker, after the first one failed to follow through and come back to talk to me.  It was Monday or Tuesday when I spoke to her and their was no sign of her Friday. So it might have been Saturday when I called and this other social worker came and spoke to us.  I remember wishing she would be the one who came for discharge.  But no, it was not.  So sometime after 4pm, the social worker shows up and begins the conversation

mind you my husband suffered a severe heart attack, was in CCU for 4 days and then the step down cardiac unit for 8 and was on monitors the entire time we were there. When he was finally able to get up and move around well, it was the weekend and I had to throw a fit to get Physical Therapy come see him on Saturday, knowing it was very possible he would be going home Monday and his doctor was off for the first time since we’ld been there and wouldn’t be back til Monday.  His replacement was a Jackass who spoke inappropriately to the nurses (my husband’s description) well, he didn’t call him a jack ass, I did because he walked in, I wasn’t there, and looked at my husband and said, well, it doesn’t look like you’re going any where anytime soon.  This was Saturday morning after his doctor had led him to beleive the day before that he might very well go home Monday.

The next day, he had apparently talked to my husband’s doctor and was much more on the ball with what was going on with my husband and more appropriate, at least with my husband.

Nurses, apparently learn how to ignore the jackass doctors because, well, doctors are not known for their personalities.

Remember, I have worked with doctors, so I know first hand.

So now that we are all agreed that the guy was a jack ass

Oh yeah, my husband wasn’t allowed off the unit, not beyond the square around the nurses station in the small step down unit at the end of the hospital surrounded by vacant hallways due to a remodeling project because it was the weekend, and they would have to clear it with the doctor, have an order (everything needs an order)- I wonder if they need orders to speak kindly- you know, jack ass is the default mode-

anyway, so my fit to have him come off the unit and be wheeled to a new floor to get out of the room he had been for 8 days, unlike my fit to get PT to see him- guess I knew how to play my cards better with that department or maybe cause therapists generally aren’t jackass.. cause once someone called them, they came that day and the next,

so

Now,I am beside myself because it looks like I might be bringing my husband home on Monday and it is Saturday afternoon but I won’t know until I show up at 8:30 Monday morning and sit around and wait for the doctor to come in- cause that is the only way to be sure to be there when he comes to see my husband, is to show up at the earliest possible time that he might come for rounds.  It was 6:30 when he was on CCU.  And then the nurses tell me really I should be there earlier like 7 just to be sure.

So he has been on continuous cardiac monitoring the entire time he is here, all 12 days with frequent checks of blood pressure and pulse and oxygen saturation.  And we can’t leave his unit but in two days, they might just send us home-

with home health care because I insisted on it-

And that is another story, because the lovely social worker, never notified the Home Health Company that he was discharged and so they did not know to come out to the house and the they are supposed to be there within 48 hours of discharge.

How do I know this? Because I have worked in home health care.And so the home health nurse came 2 days after he was home, because I called the agency and I let them know he was discharged

BECAUSE  I DID HER JOB

Put me on payroll please

So back to the hospital when the social worker finally comes into the room after we had been waiting all day

NOW I do understand that case managers or social workers or whatever you call them, are way overworked because I KNOW DAMN WELL THE EFFECTS OF THE CUT BACKS ON HEALTHCARE.

This issue is not so much how long it took her to come but the information she brought to us when she finally did come.

She started her conversation off with us something like this

and it has been 6 months and a blur and I now understand what she was doing but at the time, I had no clue.

She came to us and said,

“OK you can get this medication at these places and this medication at these places”

And she had these long lists, not that she was giving us any list, I don’t recall that she did.  Maybe she did.  And she went on and on and I was like, what the #%!?

I knew I needed a prescription for 5 days until we could get Med Assist (local agency for assistance with medications when you don’t have medicaid) but little did i know that I really needed to go and apply for that while he was still in the hospital.  Like I had time for that between advocating for my husband, caring for him, being there for him and then being with my children in what little hours were left of the day/night.

So I had no idea, it took 5 days from approval and that they would look at our income and base an entire year of income on 1 month of my prn pay checks where I was working more than twice the hours I normally do. The increased hours were temporary while another OT was on maternity leave.  No idea that would be the policy. Because, did you know the entire support system like Medicaid is set up based on people who work for an employer full time or at least regular part time hours.  There is no consideration for prn pay (which is higher than normal pay because you have no benefits and NO guarnteed hours- I have lost a week of work because of being prn- thinking I would work 40 hours one week when they didn’t need me for that and ….I digress

I like being prn- but if you need help form the system, you are screwed.

Just to be clear, I have been sick with some kind of upper respiratory thing, and today I have heard what I believe is whezing and I feel like I am going to cough up my lung.  Well, grief is processed in the lung.

And for some crazy reason, when I try to sleep, I have been relieving 6 months ago and my husband’s blue face and the whole freaking experience.

Maybe I am finally REALLY FEELING IT ALL AND FINALLY REALLY GRIEIVING.

My husband was discharged from Outpatient Cardiac Rehab this week.

Hmm….

Coincidence?

I don’t think so.  Just now realizing that one….

…and it is still sinking in….

ahh, other stories to tell.

Back to.?

Ah yes, the lovely discharge with the Case Manager on May 16, 2011.

So she is talking about all these places to get medication to get the $3 rate and how I can go to more than one pharmacy to get them all and I was like

?WTF?

I GUESS I THOUGHT THEY WOULD SEND US HOME WITH MEDICATION

It was getting late, my mom had my kids and was going to bring them to the hospital and was going to be heading home from there and  I would be driving home my husband, now off all monitors, with our three children, ages 2, 9 and 13 to be alone at home and manage everything.

While he was in the hospital, my family and friends had pretty much taken care of all meals and grocery shopping and all the laundry.

So I am worried about my husband having another heart attack or something medical when he returns home and worried about helping him recover while taking care of our intense and 2 out of 3 very high need childden.  And she is taking to me about saving money for 5 days worth of medication.

so I think I cut her short once we figured out we could just get 5 days worth of medication from the hospital pharmacy and then be on our way, but the pharmacy closes at 5 and we had to hurry.

I don’t really remember what happened next, with the case manager

I just remember the long wait at the pharmacy and the not so friendly pharmacist and the other person who worked there-

shame on both of them, they work in a hsospital, they need to be nice to people!  Everyone else, mostly was very nice including housekeeping staff and kitchen staff- but oh, not the pharmacy.

So we get the expensive medication that I had to pay for then.  You would think it could be on our bill….but no, WE WERE DISCHARGED AND ON OUR OWN!

It wasn’t until Wednesday that I could get to the Med Assist office, when a friend was able to come stay with my husband, and turn in the paperwork and then it was at least 5 days before I found out, maybe longer that we didn’t qualify, just over by like $1800 per year- due to the above mentioned prn pay checks for one month that they multiplied for the entire year even though that was grossly inaccurage and even though they had our 2010 tax return showing our income was less than half of what they calculated.

So This is why I contacted the Head of Case Management. I got the name and number while I was in the hospital before the discharge fiasco and before they failed to notify the home health agency.  And I called them from home and they called me back.  Mind you I was now home with a husband who got dizzy if he stood too quickly, had only just begun walking around on his own a few days prior and was out of breath with the slighest amount of activity and three children and despite us all holding it together while he was in the hospital and doing “well”, thing were challenging coming home.

NO BODY TALKS ABOUT THAT

The COMING HOME after the Heart Attack

They assume, he lives, he does well, he goes home, yeah!

NO one realizes how much harder it really is, going home.

I tried to tell the nurses at the hospital….

The Case Manager, I don’t know that I got the chance, I did share some of this with the second one, who came to us just that once.

BECAUSE I HAD SO MANY OTHER THINGS ON MY PLATE

I never did get to speak to the Department Head at the Hospital.  I left a detailed message and she called back and maybe spoke briefly to my husband because I was not home.

I think I need to send her a letter.

So I don’t leave anything out.

I could send this one, but I might need to remove a few jackasses and the like.

I am adding a note:

I don’t think I coughed once the entire time I wrote this.

It didn’t even occur to me til after i finished writing it and I realized my breathing seamed silent and my chest felt better- from not coughing so much.

The lung processes grief.

Thanksgiving Gratitude

I am grateful for:

Waking up early and wanting to get out of bed

Waking up and thinking about writing in my journal

Two adorable kittens who eagerly eat as I type

All the pets who have come into my life

Waiting my children care for out cats and our dogs

Watching all three of my children with 2 little kittens

Unfiltered apple juice from Trader Joe’s

Chai Tea

Thankmas…

Our family gathering to celebrate Thanksgiving, Christmas and several birthdays

Having a really good time being with my family

Purring kittens

Music, my iPhone, Spotify, playlists

Memories

Shadow’s upside down heart under his chin

My son’s fiancé, Liz

Who is so special and dear to me and brings us to a family of 6

Watching kittens play with toys

These magical kittens who showed up right after Peanut died

The universe is amazing

Jan Luther and EFT and how much she has helped me be who I really am

Gluten Free pumpkin pie waiting to be eaten

And the chocolate chip gingerbread cookie mix that I almost forgot about…

Flexible work schedule

Early morning writing, it feels good to be back at it

My amazing children and how they enrich my life and lead the way

Don, my best friend and partner

I am so grateful for the past 7 years with Don in my life

Don surviving his heart attack in 2011

Caring for children and for animals

Shadow and Sunshine, gosh they are adorable

Kittens eating bugs

My home, our remodeled bathroom and kitchen…

And all the love we share within these walls

Overcoming challenges

Looking forward to a wonderful day with my family

Missing the members who can’t join us today

The liter patter of little feet

49 years of life