Mid Week Review

My daughter’s and grandson arrived at my parents in Manchester Georgia around midnight on the 15th/16th. 

My new injury is healing as well as it can be. It’s heading on a week since it occurred. I’ve continued to use it as normal as possible.I resumed my kitchen counter stretches yesterday. 

Nearly a week later.

Since the original injury in 2001, I’ve never been able to roll off that foot. Heel to toe. A little unsteady. I call it clumsy.  I haven’t been able to run, but since MLT I have been able to jog in place. I’ve made it up too 100 Steps. 
In a few days I’ll re start again at 10. I’ve already been moving my toes as well as ankle raises. My counter stretches yesterday did cause the scrape to tear and bruising to pull. It may have hurt and it could have told me don’t even try. Don’t do anything just keep hurting. Afterwards I elevated. It takes pain to fight pain just like it takes fire to fight fire. 

I increased my Turmeric intake and used my topical mix I made for the dog bite. By the way, it couldn’t be doing any better 18 days later.

I briefly mentioned that a physician has agreed to review my records for new patient consideration. His lady is requesting them directly from the adjuster and I’ve also requested that they be sent from the attorney as well. 

The Bay Area Pain and Wellness Center is similar to where I was for 12 years. Functional Restoration program, multi disciplinary, ideals I believe in. 

I attended and completed a 6 week, full day FRP in 2009. I started within a week of a full revision SCS surgery. Initially permanently implanted in 2006.

If I could have MLT 2-3 times a year I would. What I’m hopeful for is a physician who can assist my rough points so that I can continue to do my home PT, my post MLT protocols and assist me in maintaining my SCS. I haven’t had a provider for it for 2 years either. 

I look forward to a physician knowledgeable in CRPS reviewing my records. And this because I was a model patient, in compliance, and I loved my last pain management provider and all those I established great relationships with over the years. I just don’t love that day when I.was let go during the most physically and emotionally unsteady weeks of my life. 

What I’ll always be appreciative of is that the lead man at the FRC Mr. Wurster continued to see me and provide LLLT and Bowen weeks after I was terminated at the clinic. After a couple of months I stopped going, I knew he went out on a limb for me and I didn’t want conflict for him. Me, always worried about someone else. I thank him still.

The point is Dr. Levin gave me an LSB 3 weeks before. If I was a bad person or bad patient that would have never taken place. It was my follow-up appointment for that block, my scheduled appointment combined, my SCS integrity check, and to reveal that first suicide attempt 9 days before. Where I had already reached out with embarrassment and insecurity asking to speak with or meet in person the psych staff. No one responded. I know the practice was switching hands and chaos existed. It was no more my fault than it was theirs not being able to keep up on patients.

I’m not sure what I could have done right or better during that appointment to have changed the outcome. Be your own best advocate they say.

2 years yesterday I accepted the Bakken Award in person. I went without any pain relieving assistance, I was withdrawing from Cymbalta and Zonegran hard. I had oral surgery days before. I could barely walk, barely talk, I was dangling on the edge. I wish that entire experience was different. 

A month to the day I would choose to bail from this world for the first time. 

Really in hindsight it was all meant to go the way that it did because I learned that f I wanted to live, regardless of diagnosis’,  regardless of pain, regardless, I’d have to do that by my own self will. 

I have. 

My grandson is celebrating his 12th birthday with his grandparents. 

There are angels among us.

His actual birthday is February 2nd. I quit drinking that day last year. After all was said and done, I haven’t misused alcohol since. 
Progress continues…

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Stone Cold Sober

Stone Cold Sober

Brantley Gilbert

I guess I said some thing’s last night
That’s usually in the morning light
I regret it
Like double shots and cigarettes
Said things like
“I love you baby” and
“I know I sound crazy, but let’s just work this out ya and maybe settle down”

I woke up hungover
But still had to call you
‘Cause I just realized girl
That maybe it was all true, yeah

I let the whiskey talk
And baby it said too much
I got the feeling now
It didn’t say enough
‘Cause I’m waking up alone
Missing that midnight kiss
I can’t promise you forever
All I know is I still want you to come over
And I’m stone cold sober

Well I can lie about 99 percent of the time
When I’ve had too much to drink
Yeah I do stupid things

But this time is different
And baby it feels so right
I hope you were listening
To every word I said last night

I let the whiskey talk
And baby it said too much
I got the feeling now
It didn’t say enough
‘Cause I’m waking up alone
Missing that midnight kiss
I can’t promise you forever
All I know is I still want you to come over
And I’m stone cold sober

Yeah I got blood shot eyes (Got blood shot eyes)
But it’s all crystal clear (All crystal clear)
No I don’t need Jim Beam
To know I need you here

Yeah I let the whiskey talk
And baby it said too much
And I got the feeling now
It didn’t say enough
‘Cause I’m waking up alone
Missing that midnight kiss
I can’t promise you forever
All I know is I still want you to come over
Baby all I know is I still need you to come over
And I’m stone cold sober

Yeah baby I’m stone cold sober

Come on over

https://youtu.be/kNyeaaHKPPA

Stone Cold Sober


(The first step in any recovery is admitting a problem was either.brewing… or….) 


I Lost My Marbles

But I still have my balls. 

Ha!

I use marbles for therapy. I’ve misplaced them. I still have the tennis balls close by. I use the marbles the most for my hands. It really is amazing what we can use for pain relief that might seem a bit silly to some. I use them in different ways for hands, feet and body. To roll out knots, reduce inflammation, promote blood flow and better internal organ function. 

The tennis ball techniques I learned while receiving MLT. The marbles was some months back off the top of my head during a hand flare. 

Imagine what we can do with a spatula. Hilarious!

Our oldest daughter Kharisma and our grandson De’Mantai will be on a Greyhound soon, destination Texas to spend time with our daughter Rikki who moved there in November. From there Rikki is driving them to my parents in Georgia as previously planned.

We learned 2 days ago that my dad has 4 blood clots in one leg and 3 in the other. These are unrelated to his stage 4 cancer. He’s an active man, but he’s to be on bed rest now with the blood thinners and depression is already.present as a result. 

My wish is that their grandkids arriving in a week or so brings them all comfort.

Today is a significant anniversary to something I won’t mention this time. This year there won’t be any grief over it. It had taken awhile to let that one go. It’s been gone as it was for so long a year today. The 26th will be the anniversary to the injury that led to CRPS 17 years ago. Ridding myself of most of that too. It’s like a bug you can’t flick off. 

The bruising is fading from the dog bite on new years eve and the bites themselves are doing well. His are a little slower healing. I mixed lavender with OTC lidocaine, and fresh steeped Turmeric for topical relief. 

Well I’m off to play with my balls, check in with mom,  steep another batch of my medicinal tea concoction, do a few Spanish lessons and burn some white sage which I’ve done each day since starting. It really has helped restore balance and life force, but I suppose it wouldn’t if.I didn’t believe in it.

Oh where oh where have my marbles gone. 

Happy 2nd week of 2018.

The Day After Yesterday

Our new years day and evening was pleasant. He worked that morning and.our son was coming to get me for Church as arranged. I was up at 8:00 a.m. and ready for his arrival. 

I called him before he reached me to tell him I couldn’t go after all. My dogs were in a mood and and even though I had already separated them in order to leave, as soon as I closed the door behind me and stepped outside the gate to meet Ozra they started howling like wolves, loudly. I could hear them from the driveway. I had an uneasy feeling.

My husband got home from work early afternoon. I had done chores, my physical routines, and got everything ready to cook the next day. 

We played Words, listened to music and I was inclined to reactivate Facebook to wish everyone a happy New Year, share some progress and family. 

All was good.

And then,

The dog fight. I mean that literally. We both jumped up, he grabbed 2 of them, and was bit pretty badly in 3 fingers and his thumb. I grabbed the other 2 that suddenly wanted to fight as well and was bit pretty good with both a gash and puncture in my left lower thumb. The puncture hit the bone and swelled through to the palm of my hand. 

Now I had 2 near worthless hands, he had one good one. As we’re both securing our own mass bleeding my mind goes straight to I don’t care about CRPS. Don’t care about if a flare starts, not worried about a spread. If I cared that much I would have reminded myself before I intervened, I have CRPS you can’t get involved in a dog fight and don’t help him either. I might think a lot of things, but I don’t think like that. 

Regardless of the situation, I had planned to cook a Turkey and it still needed to get done.

I re deactivated Facebook. 

I needed to get creative in order to achieve my goal and throw any pain or thoughts of it away that could otherwise halt or alter new years day.

At 3:30 p.m yesterday the bird came out of the oven and dinner was still a success. 

He left for work nearly 2 hours ago swollen, punctured and gashed. He works in fulfillment, he uses his hands and feet all day. I’m not sure how he’ll manage the shift but I have faith in him that even in pain he will. 

The only part I got upset at but held back on repeating was that I told him immediately to wash his hands. He didn’t. Today his hand shows signs of infection. Today too I did mention again that I told him to care for it and he said he did. Yeah once the next day. To be clear, I’m speaking of wound washing. Before work he went to buy peroxide, triple antibiotic ointment and bandages.

We want help, advice, want our injuries and pain acknowledged, yet won’t consider enough any that’s given until it’s too late to reduce further damage, complications or pain. 

I’m glad it happened on the eve. It went bye bye at midnight and yesterday was good even though my perception or mindset could have been all bad.

Cheers to a new year and another chance for us to get it right.” Oprah Winfrey

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!

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.

Undeniable Breakthrough

I haven’t written for a minute because I’ve been struggling to maintain a sense of worth and ability while at the same time coming out of the closest remission I’ve ever had. I’ve learned to survive without medication management for pain, yet there are times I wish I had even a 10 count as needed a month of Hydrocodone or Tramadol because it’s hard. I’ve learned and used every natural way I know to help myself.

I know that no physician ever pushed opioids on me and I don’t believe that even though I was dismissed and abandoned that it was personal. I understand they were under stress during that same period of time which just happened to be my worse time.

I never used the 10 on the pain scale in all my years of CRPS or the dozen other pain and non pain related disorders. I reserved that number. When I did use it, when it was 10 it didn’t do me any good because I suppose it’s so overused even the medical community thinks it’s a joke if we do.

The joke was on me.

Overwhelming - Breakthrough

I spent the summer in a little kiddie pool in order to do weightless movement that I wasn’t physically strong enough for outside of water. It really helped a lot. I’ve had a treadmill for about 10 years, an old model and still in working order. I’ve had a stationary bike for approximately 10 years, the ab slider my son sent over a few months back, my yoga ball while about 4-5 years old I only started using recently.

It’s just the treadmill and yoga ball I’m using now along with some stretches, mindful about posture, I learned with having MLT.

I could suck it up and have the spinal surgery, or I can suck it up and continue to do all I can for me still without any of that. It’s been a great stress reliever to not be having monthly PMD appointments, to not worry about whether or not medications will be delayed or denied, to not wait for a lumbar or cervical pain block, to not have to rely on someone or something for relief.

I’ve managed also to better regulate my high blood pressure often 180/+ to restore internal involvement, level off drastic inflammation and swelling for the most part. Today is a swollen day, symptoms extra present, dreading getting on the treadmill, but I have to even if for only 20 seconds. I’ve not made it beyond a minute even on better days.

I use the chia seeds for their anti inflammatory, anti oxidant, fiber, and other qualities. My allotment of vitamins have ran extremely low, so I’m out of some, and have a bit of others left. The combination was helping me maintain better. I feel like ka ka right now and so I know they provided a benefit. Since it’s expensive to buy so many different kinds I’ll be replacing it with Prenatal vitamins this upcoming week. The prenatal (nope, not pregnant) provides many supplements in one for a single price. That’s my best option until I can replace my others. I use fresh ginger as well.

The chia seeds I use as a sprinkle on foods and in water, coffee. In liquid the seed becomes a gel.

Later I’ll be doing either Facebook or Periscope live to share these natural ways of helping ourselves. Especially for those whose pain relief analgesics have been reduced or stopped and for those interested either way.

Do things happen for a reason? Or are they random? I’d like to believe it’s all been for a reason and that reason being instead of advocating and raising awareness solely for cures and information about an illness to instead raise it for HRQoL, suicide prevention and our mental health that will always go with it.

That’s the purpose of Stronger Than Pain.  Helping people live not just share with them all the reasons they never will again but rather all the reasons they can, must, and have to.

Through it all came an undeniable breakthrough.