The Simpler Things

My aspirations are much simpler now. They include living each day however I might in a different mindset that I had previously. If I hadn’t gone through all that I have, especially the last 3 years and definitely since February of 2016 I most likely would still be thinking as I did then and doing as I did then. I most likely wouldn’t have even found a way to go on, yet I have.

images - beach

 

I might have stayed depressed waiting and wondering why or if ever I would feel okay enough in body again. That’s heavy. Don’t we all feel that way? Or most of us?

I use to think that physicians were suppose to help us. I don’t even believe that anymore. I know sometimes people expect me to choose one side or another of something. I don’t choose like that.

Perhaps some of it , my lack of forming words or expressing myself correctly enough to others is from abrupt discontinuation of medications so many times, or the TBI’s I’ve had or my Cerebral Palsy is catching up to me a little more, or the mental break downs as a result of unmanageable physical pain. You know brain fried?

Or just believing that I’m responsible for me above anyone or anything else.

Maybe. Or maybe I do express myself well enough and it’s just perception. Some people can’t wait to be offended. I suppose it’s easy enough to just ask for clarification, but the human emotion rather feel slighted so they have something to fight for or against.

I didn’t even use to be a TV person. Not like I am now. I enjoy watching a Series. I had pretty much given up writing, 100’s of poems and lyrics over the years. I couldn’t squeeze in joy for myself. I’ve taken up painting. I can’t stroke right, or brush evenly, I don’t have enough feeling in my thumb, forefinger, and my middle of finger of that same hand locks from curving. I can barely feel one side of that arm up to my elbow. I still use that hand. I’m ambidextrous which has helped me greatly.

I enjoy making my husbands food even if it takes me all day. A couple of days ago I was cutting an onion and sliced the palm of my left hand. On Thanksgiving it did the same thing to tip of my finger. I have choices. Stop using these hands to prevent accidents or keep using them. I need to use them. My legs ache often, my CRPS type 2 is so so right now only because of the colder weather but I move my legs everyday, ankle raises, knee raises, back movement, arms. I don’t have full body CRPS, I do have full body various other diagnosis’ including both my lumbar and cervical spine.  If I didn’t stretch, my flesh would constrict against my bones and my pain would be escalated.

I was barely 33 when my life stopped as a result of CRPS. Or is that I let my life stop because of it. I’m still thinking about that.

I’m a caregiver to my husband who also isn’t well. My son is a caregiver to me as needed. He was at the hospital for me, us, during his dads last heart attack last month. He advocated for us with physicians, he stayed in front of me so I could drive the car home from the ER parking hot safely as his dad was being transported from the first hospital to another.

I’m in the process of becoming a member at the Church our son was baptized at years ago. I’m a baptized Lutheran. My goal is to be baptized again by submersion as a local yet Southern Baptist. I miss attending at times and that’s a set back for me. Or is it still progress? My Narcolepsy is worse against right now but I set the cell alarm to vibrate to wake me or keep me from the dozes. I really am learning to manage my own life.

Today I have chicken breasts in the crock pot with a buffalo sauce. It’ll be ready by the time my husband gets home from work tonight about 11:00 p.m.

Not this Saturday but the next we’re going to our local swap meet outside auction, I don’t get out much still relying on someone else to get me anywhere. Over the summer I had myself on a great schedule. Up early, in bed early, but I’ve altered my routines to his schedule. I get a nap each evening between 5:50 and 6:30 p.m. About 7 p.m I make an espresso.

I can’t be amidst pain all day long so I’ve minimized my internet time again. Feeling other people too much only sets pain into my own body.

Heck, maybe I really shouldn’t be on the internet at all. Anything that can get in the way, will. Ha! I have no working computer again and did try to restore my laptop it didn’t work. My husband tried a few days ago too. Nope. One more option and that is to buy an encasing pull the hard drive, enclose it, and go from there.

The one I speak of above hasn’t worked since summer time. I was using my really old back up one, the one that barely did anything because of such an old version of windows but… my dog rushed through the side table, tangled in the cord and to the ground it went before I could catch it from making contact.

Actually, I do have a working comp it’s just not mine, but am grateful to use it.

Is there even such a thing as bad luck? I’m not even sure about that one anymore. Randomness.

I was filling out an application the other night and the entire page went down during it. Maybe that wasn’t meant to be either yet I could change it by doing so again. Nah.

My aspiration is to live.

My crock pot is my best friend and my home made cafe mocha makes me smile.

I wish you smiles today!

Advertisements

Hardships as Blessings

How many of you consider pain or hardships as blessings?

While pain, hardships, disability, or inability are not things we’ve asked for in our lives, they can, if we let them, teach us, help us better when the next crisis comes a long. They also teach us compassion, even if we were already compassionate people. Sometimes compassion comes in the form of understanding someone like us, who shares our illnesses, but what about compassion for those who aren’t us? Those who’s illnesses perhaps are different?

I’ve been blessed. So blessed that I know what it is to be homeless and I’m not speaking of homeless in another person’s home. Are you really homeless if someone else puts a roof over your head? You may not have your own home, but someone else has given you theirs, therefore how homeless are you?

All those things we take advantage of yet aren’t necessities. Hot water, heat, air. These are not things that cause me stress they can however reduce my ability to progress in pain because it’s take effort that most in pain can’t or won’t achieve. For quite some times there wasn’t any working toilets either. Imagine that. It was easy enough to accomplish, so you potty in something else.

I learned so many different ways to feed us, bathe us, heat us and cool us. Mostly these are things our world takes for granted.

I consider them being lessons. And I imagine what it was like 200 years ago. Living off the land, cooking with coals, or wood, fetching water from a stream and heating it for those things we needed. And with that, I’ve learned.

I know that if our world is ever compromised, or if, can I be funny now? The zombie apocalypse happens, if marshal law is ever enforced, or if it just gets harder and harder in America, I will survive.

I’ll survive right along with those who shelter in coves, underground, on the river, in the mountains, on the streets. Will you?

It seems that I’m harsh sometimes, I know. The perception of most is that I’m without compassion and that I don’t understand you. On the contrary I do and that is why I won’t go silent about the things that can really help you, save you, assist you.

Look, I don’t care about your pain medication or how much you need it, I care about you being able to live without it when that day comes for you. I don’t care about what you have, or how your life is over because of it, I care about how it is possible to live with it, if you want to.

Easy for me to say, right? We live in a society that believes that someone else is responsible for our lives, our pain relief, our live or give up. No one is not really.

There was a lady who attended the Gohl Method program with me the second time. She’s a nurse. She has CRPS. She was born into a country that the only way to get food was to stand in a line, food controlled by the government, a country that America isn’t, not yet.

The lady came here and she thrived in education.

Yet we put down all the immigrants because they are somehow less than us. Funny thing is that they are grateful to be able to buy their own food, from their own earnings, they are prouder Americans than most Americans are because they know a different type of suffering.

The lady has CRPS, gets her MLT treatment again, and she goes on with her life. We can though, we can’t go on with our lives because we expect healthcare to somehow do the work for us we should be doing ourselves and for ourselves.

Facebook isn’t good for me and I’ll leave that down for a bit still. The things I post are taken as offensive and then I get defensive. Facebook is both a save from isolation for some and it causes further isolation for others.

I think that twitter, or blogging is better for me. I didn’t run away and even though it may seem as such to some and while I had tried to tell myself I wouldn’t deactivate it again and instead simply not log in, for me, it is my better choice for an optimal break.

The same day that I deactivated I attended a training webinar.  I’m still a Medtronic Patient Ambassador. Stronger Than Pain INC isn’t mine, I’m only apart of it for my son.

My wishes are bigger. They are for life not for inability to live life or stay in it.

I don’t believe it’s any physicians job to change my life. They can assist me, but I have to make that difference. Heart disease, diabetes 2, multiple other illnesses that people end up with whether primary or secondary are for us to change. I don’t believe that physicians prescribe opioids just to prescribe them. I’ve been denied for alternative care too. I believe that if addiction, misuse or overdose occurs that we chose to do that to ourselves. If a medicine is prescribed every 8 hours then taking it again 2 hours later is leading to your own destructive behavior. I believe that in part, some documented opioid related overdoses were in fact suicides. While my faith is low for western medicine it’s not because of a push for or lack of prescribing opioid analgesics.

Pain? I can’t reverse much of my own musculoskelatal disorders, some of which caused to worsen by not doing more for myself.  (If this offends you, you’ll understand better when you realize much of what you ended up with wasn’t a direct result of your original diagnosis, but what you let happen to yourself as a result. How dare I say “what you let happen?”) I know you want to tell me how you never asked for it. You’re right, you didn’t, but you need to find your way even in pain, or…

Musculoskeletal disorders (MSDs) are injuries or pain in the human musculoskeletal system, including the joints, ligaments, muscles, nerves, tendons, and structures that support limbs, neck and back.
But after a really hard decline, clearing my body of all medications, stretching, working on my mindset, I’ve been able to halt progression of those problems.
My pain relief can be found in your food section of a grocery store.
I had turned my SCS off upon my first treatment of MLT in late October of 2016. It remained off during my second 5 days of treatment in mid January of 2017. I was able to keep it off for quite sometime after.
It’s been back on for a few months now.  This isn’t a negative but a positive in that my SCS affords me my own continuity of care without drugs prescribed or otherwise.
Have you ever been blessed by your pain or hardships?
I have and I’ll teach you from each of them.
Take it or leave it.
I know you’re listening
Even if you can’t stand it.
Godspeed. Gratitude- Maya Angelou

It’s enough because …

And my faith is enough because…

And because if I don’t for me,

No one else will,

Nor should they have to.

Gratitude.

Week in Review

I haven’t so much gotten many breaks this year aside from MLT but I’m much better able to handle the stressors.  The last couple of months has been pulling our home out of foreclosure, my husband returning to work, dealing with loss of insurance and then thinking its merge into covered california coverage would be at least somewhat affordable, but it wasn’t. My previous post about starting PT again was hopeful for a minute. The authorization and appointment was scheduled in days. It would have begun November 2nd. Our insurance ends October 30th. I had already lost care for my SCS and CRPS in February of 2016 this new appointment was separate under Medicare and for my spine only.  Even though I have lifetime medical under Worker’s Compensation it’s not that easy.  My injury was so long ago even physicians who accept WC have declined to take me as a patient.  My previous PMD didn’t get paid for his services for me for 5 years straight until he proceeded to court on it. I understand that a doctor needs to get paid and my adjuster nearly always delayed or denied. I’ve been in the process of closing out that future medical since the end of June 2017. It could take years. It hasn’t provided me nothing.

Our second daughter Rikki and her Fiance are moving to Texas. They’ve sold their home and will be leaving any day now.

Our son was activated for the California Fires (Sonoma) Emergency State Active Duty (ESAD) IC4U Unit. He works for the Solano County Sheriff’s Department and was already driving into it each day for his position securing the courthouse, but then was called to duty.  Ozra is also the CEO and President of Stronger Than Pain so he has a lot on his plate too.  Especially for having not turned 21 yet.

Kurtis Ozra IC4U Unit Telecommunications Specialist

I know there’s a difference between those who’ve fought and who are fighting overseas and in combat zones. Ozra is State side. I’m just as proud because we need help too.  Our devastations need these units to protect us as well. Both of my dad’s served in Vietnam. My current dad (my mom parted from my birth daddy in death in September of 1991 and married her childhood sweetheart years later)  was active in front line combat in the nam. He still has shrapnel in him. He’s both retired military and retired law enforcement. My daughter Rikki served in the Army, her fiance did 2 hard tours including Afghanistan. My husband was Navy for a minute and his father 21 years in the air force, his mama was an original Rosie. He flew them, she built them.  My husbands brother was a Navy Seal, we lost him in 2016. My husband was born in his parents 40’s, they have both been deceased since our early 20’s My dad died 10 months before his dad, and his mom barely 2 years later.  Ozra never met any of them, but I know they know him.

I’m severely behind in trying to catch up on anything internet or social media related. Our internet only became active for ourselves less than 2 weeks ago. Email has been a chore. I’m using an old laptop, so old it doesn’t even connect to certain sites because of browsers being out of date. Can’t update because they aren’t supported with such an old version of Windows. I’m grateful though that I have partial access at least and that’s been good enough.

Our grandson ‘Tai is thriving and our oldest Kharisma is hanging in there.

Currently, I’m working on returning my breathing machine to the sleep source center, cancelling that new PT appointment, and getting my other laptop restored though I’m not as on that as I could be.

My day’s are:

Move my body out of bed

(After sleeping, I’m sore and stiff)

Make coffee

(Do a few stretches using the kitchen counter)

Start home chores

(Have coffee)

Feed my dogs

(Try to feel awake and reduce pain from rising)

Internet and email

(As much as I can however limited from myself or something else)

Rest

(Stretch)

It’s repetitive all day.  Do, naps, do, rest, do and do some Netflix, too.

 

I go to Church as much as I can. Sometimes I go, but don’t stay for group.  It’s embarrassing for me to doze when Pastor speaks. I’m learning better that it’s okay, but I’m not so okay with it yet that I would let me fall asleep on them like that knowing it’s coming.

We start Church with a set of 3 songs and end with 1.  I’m finally able to stand for most of them.   A few times I’ve been able to for all, but not every time.  Progress still.  Of course I pay for my standing, singing, and wish to be with others, but I’ll do it again because I want to that much.

I just restarted PreNatal Vitamins as a source of a once a day with extra in it.  There’s no baby on the way.  Just another alternative to feel as good as I can without those things we sometimes hope for elsewhere.

Until next time…

 

Packing and Praying

I messaged my son earlier and I asked him to pray for me. I said “Please pray for me that I can do the work and be strong enough to go on with it”. He replied “Always do mom”. I said “Thank you”.

My recent Twitter posts were meant to be known and while I could have held back on the potty mouth it wasn’t all that necessary. Why? Truth. Because that’s the reality in it all. I have my dead daddy’s mouth and while I didn’t use those words when he was alive or even in the first 20 years after he left us I’m sort of proud that it really doesn’t matter in the grand scheme of things. It only matters that I don’t drop those words if I want not to. It’s not beneath me otherwise. Why? Because I’m not above anyone.

Ozra is coming to pick me up on Saturday. We’re going to get this hair cut off. Yep. Most all of it. Short. Most likely to my shoulders or layered down a little farther. If there’s enough without going shorter, I’ll leave it with our girl who owns the shop to donate it.

I leave California the next day for awhile.

Threw some things away today, did dishes, cleaned up, and started packing.

Taking a break right now. I do still use my pennies carefully, but I don’t run out as quickly and that’s a good thing.

I posted about guilt some. The one thing I feel most bad about is not being able to work sooner to fix things before they got so out of hand. Carrying it all is heavy. If one person can’t carry it someone else has to. I did and I will. I have to.

I never stepped away from God and I never stopped praying. I did stop believing in hope even though I continued to be hopeful for one day.

I’ve always known I’d have to live it hard to understand it. Understand what pain is, poverty, loss, and rejection. To love so deeply that it hurts. That’s why I understand that people sometimes have to choose roads that another would never go down and many pretend don’t even exist.

I’m not looking for an easy life yet I’m hoping there’s at least an easier one out there. Hard is good. We learn. Too hard can have devastating circumstances, consequences that can’t be taken back.

My mom said “The reason you’ve gone through it all is because you have a place in heaven”.

I don’t deserve heaven.

heaven

But maybe she’s right.

New Years Eve

My family spent the evening together. It was a last minute, unplanned, lets go out for a bit. Mama’s idea! We had no plans other than to grandson sit if our daughter had any. Ozra didn’t have any evening plans, and Erika a.k.a Erykah had an event to work at 10:00 p.m. I haven’t been out for New Years Eve or New Years Day for many years beyond our children’s home and most years I just slept midnight away. I didn’t want to leave our 10 year old grandson behind and while I might like to party, I don’t. I chose a spot where De’Mantai Xayvier could enjoy the night with us. And that’s what we did. Erik (Massah), Kharisma Anna Magdalena (Maggie), Erykah (Rikki) (and Dan), Ozra (Kurtis) and Austin.

twinklev-and-demantai-xayvier-howard-new-years-eve

Nana and Grandson

Hard to keep up on our names? I know. Kharisma was named after me. Odd right? When I was growing up everyone told me I had a lot of charisma and I was always being told how charismatic I was. I named her for that. And gave her the K. I’ve always liked the unique side of people, places and things, so a C wouldn’t work. I was still a teenager when she was born. I was 18 when I conceived her and she was born when I was 19. Initially our second daughter was to be named Destynee, but I named her after her daddy instead. Erik –> Erika. Our son was to be Atreyu (Son of All) but I named him after his Dad and great great grandfather. Erik Kurtis –> Kurtis Ozra (Ozie). I gave the name Atreyu to another, later. De’Mantai is known as ‘Tai. And then me, I’m called Twink by my family and close friends, but my toddler childhood nickname that I’m still called often and publicly is Ooie. Pronounced 00 ee. oo-ee baby! Then there’s Twinks, Twinkles, and a few others.

So we gathered together for a bit and was home fairly early by 10:00 p.m. Earlier in the day we went home so I could grab that Cymbalta. Being off it was too much! At first I wanted to call it quits since I hadn’t taken it at all in 2 days because I had forgotten to bring it. I’m like, I got this! Well I didn’t. That crap is the devil. At first I only took the 30 mg, but it didn’t stop the feeling of jumping in and out of myself. It’s a hard experience. So about an hour later I took the other 30 and within 2 hours I was feeling better. So today I continued on the 60 and tomorrow I’ll go back to the 30 and hope for the best. I think about 10 days or so to be off it again. My cold is getting better, still have it, but not like it was. Phew! My shoulder is off and on again. Much better than just on.

Going back home this evening after an extended stay at our kids this week. Stayed a little longer because I wanted to minimize becoming sicker for longer when I have things to get ready for. Plus the toilet is torn apart in our bathroom, pulled the entire toilet from the ground and still needed more parts to try to fix the issue. Have those parts now so the man can work on it when we get home. Other repairs and replacements should only take a couple of months. Yay! Once that’s done, I’ll explain and share how other seemingly “impossible’s” are possible.

And with that, you might understand more clearly the last 3 years.

You’ll either be surprised, disturbed or dumbfounded.

 

In any event,

You might finally get it in it’s entirety. No matter how much I’ve told, left open to interpretation or slipped up on, I’ve never laid it all out for what it’s been.

 

In this New Year, I will.

Happy 2017

twinklev-rsdcrpsfire-new-years-eve-resized

#StrongerThanPain

 

 

 

 

 

The Opposite of Fear is Faith

Image Credit by Ozra September 24, 2015 Bay Area CA_1.

Image Credit by Ozra

Is it? I think that’s a truth statement, mostly. Fear is defined as a distressing emotion aroused by impending danger, evil, pain, etc.,whether the threat is real or imagined; the feeling or condition of being afraid. One definition of Faith is defined as confidence or trust in a person or thing; belief in anything. Without having something to believe in, to add light to darkness, or hope in pain, change, love there really can’t be either. Yin and Yang. It takes one to have the other. It also takes commitment to oneself. Believing in ourselves when no one else does. Saving our own lives, if we must. 

“One betrayal costs a hundred devotions. One deception sacrifices ten loyalties. One misconception is the price paid toward assumptions and against each other”. ~Dyversiti

The struggle has been real and it’s been hard, but no one has really known that but me. I feel like the 5 years forward I’ve come (and the 10 years it took to get the there) has led 15 years backwards. I’m not physically or emotionally well and trying so very hard to not have a bitter heart.  ‘Forgive them Father, for they know not what they do”. I’ve always continued to love and care, and.. forgive even when the pain was on me because I was #StrongerThanPain and I was stronger because fear and faith ran simultaneously through me, always.

In Theology, Grace is defined as the freely given, unmerited favor and love of God; the influence or spirit of God operating in humans to regenerate or strengthen them. The Grace of God has been with me all the while. I’m already flawless in his eyes. Yet I fear… yes I fear, my journey has only just begun. Faith will evenly carry me through it. Hope is seemingly unconditional, but hope is conditional upon others, energy, an action.

BELIEVE

by Twinkle VanFleet

WITHOUT HOPE,

WE WOULD HAVE NOTHING TO PRAY FOR-

WITHOUT FAITH,

WE WOULD HAVE NOTHING TO BELIEVE IN,

WITHOUT LIFE AND DEATH,

WE WOULD HAVE NOTHING TO LOOK FORWARD TO-

WITHOUT GOD,

WE WOULD HAVE BEEN NOTHING AT ALL.

©1995-1999-2016 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved. (Written in the 80’s)

 

Dependent on medication management, I was. I still am, yet I’m not actually taking any pain relieving medication at all. It’s easier to send someone off to mental health than it is to understand that sometimes, usually, those meds give back life, instead of take it away. And in my case it did both.

Thrive | Casting Crowns

“We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive”

“Thrive”

Here in this worn and weary land
Where many a dream has died

Like a tree planted by the water
We never will run dry

So living water flowing through
God we thirst for more of You
Fill our hearts and flood our souls
With one desire

Just to know You and
To make You known
We lift Your name on High
Shine like the sun make darkness run and hide
We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive

Into Your word we’re digging deep
To know our Father’s heart

Into the world we’re reaching out
To show them who You are

So living water flowing through
God we thirst for more of You
Fill our hearts and flood our souls
With one desire

Just to know You and
To make You known
We lift Your name on High
Shine like the sun make darkness run and hide
We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive

Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible

Just to know You and
To make You known
We lift Your name on High
Shine like the sun make darkness run and hide
We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive

Hey!

We were made to Thrive

We were made to Thrive…..
Thrive!