The Other Side of Pain

sad_facw_behind_a_smiling_face_by_mudabbirali-resizedI’m a confused person at this point in my life and it’s my journey to unravel. Some may think admitting openly to alcohol misuse is something I should have kept to myself. I don’t think so. I think it gave me the opportunity to understand those who’ve self medicated with anything. I didn’t drink everyday, I wasn’t a social drinker, or a party person. My actions of misuse were perhaps a half dozen times ever. What’s the difference between getting drunk, drinking on a regular basis, and misuse? I think the difference is I knew better. I knew better at the time I poured it. Maybe similar to those who misuse RX’s knew better at the time they took them. The ability to know better ends or decreases once altered. I had learned by the 2nd or 3rd time that I shouldn’t drink depressed. I opted to drink the one I shouldn’t have had. You know the one we shouldn’t have, that next one? While I have no personal experience with opioid misuse or addiction I think I know why people do that. At least I hope I do so that maybe I can go on one day to help them, too. Help the families recognize there’s a problem, or that the potential for one can arise. It only takes a few extra pills or that extra shot of booze to change us. There isn’t any excuse. There are reasons. I do have experience with a fatal heroin overdose who was my husbands step sister. We disconnected her from life support.

5 years ago I was so afraid for my husband after his quadruple bypass heart surgery which was after 2 prior heat attacks that I probably nagged him more than his physicians did in reminding him to care for himself better. He became so lost in his pain, the various diagnosis’, emotions and depression as well that after awhile there wasn’t anything left I could do for him. He had to do it himself. Last month the 3rd heart attack happened. Through all this and other events, I began to decline mentally. Physically I could barely make it around the house. I just didn’t want to care for awhile. I’m someone that cares too deeply and I give everything and often to my own detriment.

I’m not ashamed of my actions, but I’m sorry for them.

As previously mentioned I’ve busted my butt this year changing my pain to manageable pain for myself in all the pain related diagnosis’ I have. I’ve worked on myself emotionally, but that can still be wishy washy at times.  I see things differently than I did before and I see them from the perspective of people needing to do more for themselves.

Did you do the followup home PT your physical therapist suggested? Nope. Do any of the exercises and movements on the how-to sheets of paper you were sent home with? You know the ones that even have the pictures outlined on them? Nope. Hardly anyone does and they should be done daily. Are you doing what your physician told you to? Remove or reduce inflammatory foods for chronic pain syndrome? Nope. For Diabetes reduce sugar intake? Nope. For coronary heart disease reduce cholesterol? Nope.

What the hell does anyone want then? For someone else to do it for them?

I have his dinner ready each work night when he gets home at 11:00 p.m. Last night I was exhausted and was asleep by 11:20 p.m. Slept 4 hours and here I am. I provide him home cooked balanced meals, I even spend days making food in batches so that I can freeze it for easy dinners later. Heat and serve. I do this so I can have lighter days and keep myself from flaring. I can’t control anything I don’t make and I can’t do anything about his pain either. He has to

There’s so many people doing the same thing or rather not doing. Like everyone else he’s an amazing person, too.

The help people need the most can really only be found within themselves.

I went to Church yesterday morning. It’s where I’m at most peace. I stood for all our songs. 3 in the beginning of service and 1 at the end of it  I’m really sore, but I won’t call it pain for myself. If I get stuck on the thought of pain because of pain then it will escalate and I know this.

He’s finally pushing through more for himself now because he realizes he’s not going to get another chance. Will it be enough? I don’t know and it scares the shit out of me.

I’m severely afraid to lose him. I already was and now I am even more all over again. I’ve been his since I was 17.

What happens to us as people? Do we lose faith in ourselves? (Not a religious statement). Do we expect other’s to make our differences for us? Of course most do. At what point do we finally decide it’s up to us? When there’s no options left?

I can never reach a 9/10 again. Ever! I’m responsible for me. I roll my ball all over my body to promote blood flow, reduce inflammation, swelling, help my internal organs and structures not break down further. I stretch, and sometimes I still have to move my toes and fingers manually.

Should I be in mental health services? Probably. I was directly after my breakdown as a condition of my release. It was short term and expired. I tried again and it didn’t work out. I’m not suicidal and I look for things to laugh at or with and smile at each day over something. Painting, drum box, things that doesn’t matter if I’m any good at as long as it’s something I’m doing. Remembering all the good things above any type of painful ones helps keep pain from rising. There’s a calm in the happy place. I realize sometimes I do this simultaneously, the good and the bad. Working on that, too. I do have much to look forward to and I’m grateful for so many things and people in life.

I have to minimize my triggers, stressors, my anxiety highs and I do get triggered randomly. Not anyone’s fault. It’s mine. Before I say anything I wouldn’t otherwise say before the trigger, I need to click the X in the top right corner of my screen and log off. I have the mindfulness to know these things I just need to do better to implement them.

I had only been getting on for about 30 minutes between 1 and 2 p.m. and again about 8 p.m. after my nap and was entirely off every few days, but the last few days, off and on even more. It can get lonely with just me, myself, and I all day.  I’ll have to suck that one up too.

Valerian Root is helpful for sleep support and can provide an element of pain relief. I hope it can help some of you who didn’t know of it’s uses. If you’re on medications make sure there wouldn’t be any adverse affects.

It might take me another entire year in healing forward. I suppose a year isn’t that long. It may also be a lifelong ongoing process. I hope not. That might be a really long time. lol

It’s exhausting just thinking about that. Ha!

I do love you all. I can’t help you in your physical pain, eventually I’ll try to with how-to videos, but I’m already on the path to help in the psychological aspects that are even more important.

Goodnight again for now.

 

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Why The Apology

Cross-Posted from Pages yesterday to this blog. Reference at the end.

Why The Apology

Life is precious no matter whose life it is. I let my pain, our pain, nudge me to one side more than to another. Just like they did. They? I know! We separate ourselves from one another and we shouldn’t.

Triquetra

Opioids, addiction, loss of loved ones in life or death ended up with the development of the CDC Guidelines. The recommendations. This led to the current affairs and even our President declaring an emergency over it. It influenced further lack of care for even compliant pain patients and has caused more suffering.

The many who believed in over prescribing and the opioids being an epidemic couldn’t see or didn’t want to acknowledge that there are other people in the world who would end up losing, too.

By reducing and removing these analgesics without a plan in place to substitute relief the quality of life provided by these medications would lesson and some people would end up choosing suicide, and many would live with the ideations not knowing how to go on.

I suppose in it all our selfishness as human beings to want it our way disregards the need of others who aren’t us.

I’ve been selfish too.

We end up fighting for our causes, creating campaigns, starting movements, staying steadfast in our agendas which are in a sense born of pain in one aspect or other and then we blame each other.

I still believe that we all have choices and that responsibility for those choices should be on ourselves and that we should accept those consequences.

Addiction, any type of, is a mental health issue. I’ve learned that the impulses that drive people to do what they do are no longer their fault once they reach the point of losing clarity. to make proper decisions.  I understand better that when the point is reached where the mind has become so weakened by the addiction that the ability to make the better choice for themselves fails to exist.

I had taken this year for me. For my healing. I’m still healing and progressing.

I wish for all of us that the new year gives us all a new chance to heal from our pain whether in body, mind, or spirit and that we can all find peace in pain.

Journey on.


In reference to:

to those I ever offended ‘re . Agendas. Some existing beliefs/ personal experiences, I’ve grown and I love you too.

Advocacy

As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this.  I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.

Bay Area, California Taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain

 

I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.

I could feel my head move slightly to the left and then to the right. I was shaking my head no.

While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.

As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.

This is really all I can do and I hope that it’s enough.

 

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!

Detox Teas

Lipton Detox Tea can be found in the coffee and tea section of most grocery stores. I’ve used this brand. My favorite though is purchased from our local Asian Market. The brand is Triple Leaf teas.

Lipton Detox

While these teas are often associated with detoxing the liver, my Asian type also cleanses and supports the kidney’s, lungs, and blood. Toxins reside within our bodies from a number of things. Medications prescribed or OTC, foods, even in the air that we breathe.

Both brands cost approximately $5.00 for 20 tea bags. I’m still learning the use of dried herbs and flowers, and I like to dabble in those which relieve pain or inflammation.

I steeped in freshly shaved Turmeric root as well.  I drink it both hot and iced. I don’t add sugar. Sometimes I dash it with lemon.

The following link is the Triple Leaf brand since I wasn’t able to get just a photo in to share. http://www.tripleleaf-tea.com/tea_type/detox/

Please consult with your physician or pharmacist if you’re taking medications that herbal supplements can be adverse to.

Happy cleansing!

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.

Lecrae- Cry for You Feat Taylor Hill, (You’re clean)

“Cry For You”
(feat. Taylor Hill)

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room

[Lecrae:]
Take it away, I beg you, take it all away
The pain it causes, it makes me wish I could fade away
If they knew what you knew, they’d probably shun me
I’m surprised you know it all and you love me
I know I break your heart
Body of death, give me rest if my heart stops
Then it don’t hurt no more, can’t get worse no more
Can’t pursue all these desires, it ain’t cursed no more
No more lies about my worth no more
I understand the thoughts of suicide that do reside
But when I stop and think about my family, I feel new inside
I promised I would die a thousand deaths ‘fore I cause them any pain
But somehow I end up killing everything
I cry for you
If you feel a dark, twisted, heart-wrenching, hate-to-see-your-own-reflection
Praying for an intervention, feeling guilt and feeling shame
I just call on Jesus name
Praying daily, can you take away this pain?
Take the thorn away
Still, it remains, I
Feel the same, I
Know that I’m here, but
Still feel insane
Satan would love to see my give up and throw up my hands
He say I’m guilty but You say I’m clean

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room

[Lecrae:]
Yeah, Sunday morning, or Sunday mourning
I woke up dead inside from all the hurt I saw before me
Evil tryna take away my testimony
Starin’ at my phone, feelin’ like a phony
Oh, I cry for you, I would die for you
To escape the pain I feel from all that I’ve been through
I feel it in my soul and in my chest
Take away this ugly thorn inside my flesh
Give me death
But grace is sufficient to start my mission
I’m so far from perfect, can’t believe they listen
But hear a broken man ’til your healin’ happens
And hear a liar tell you truth to bring you gladness
I could never boast in my accomplishments
I can only hope in God with confidence
Opposite of optimist, U and I are consonants
Broken all the vowels, deservin’ of every consequence
Will you cry for me, or will you judge me?
Will you throw stones at my head, or will you love me?
I could never be everything that you wanna see
But crooked sticks draw straight lines, just look at me
(But crooked sticks draw straight lines, just look at me)

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room