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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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.

 

Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief

On June 7th 2017, my son announced that together we’ve began the process of becoming a non profit organization. Our mission is suicide prevention and relief, techniques, support and services with mental health awareness at the heart of our reasoning.


After a considerable amount of discussion, I have opted to begin the process of starting a 501(C)(3) Non-Profit Organization with the help of my mother Twinkle Our mission will be suicide prevention and relief along with mental health awareness. We have begun the process of filing paperwork with state and federal. We lose over 40,000 people a year from suicide, over 5,000 of those are Veterans, over 250 are First Responders, and our goal is to help lower that number. Please like our Facebook page StrongerThanPain as we are currently working on building our website. Please email Info@StrongerThanPain.Org for any inquires.


While I chose not to form an NPO for chronic pain and RSD/CRPS over the years because I appreciated being apart of others as a volunteer, I’ve opted to do so with my son.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson

Mental health is at the core of every physical ailment and physical decline, illness and disability becomes a hardship to mental stability.

Suicidal ideations, attempted suicide and suicides themselves affect our soldiers, first responders, physicians, chronic pain patients, at risk youth, LGBT-Q, all of us.

We want to help you believe that who you are is enough, what you do is enough, we want you to know that you’re loved and appreciated and we want to help you either stay or become stronger than pain.

We want to assist you in healing your body, mind and spirit. We want to help you overcome not just emotions but obstacles too.

As we build our brand and develop our website, we’d like to invite you to like Stronger Than Pain on Facebook.

Follow us on Twitter

Or Email with any inquiries, suggestions or for interest in joining us at: info@strongerthanpain.org

Every donation counts toward helping us help you, every like is worth just as much.

http://strongerthanpain.org/donatenow/

We’re proceeding through the proper steps and our initial paper work is currently being processed for filing with state and federal agencies to obtain our status.

While our website is currently under construction and we’ve only just begun we want you know that we have.

Stronger Than Pain Logo

Understanding My Truth

As I approach my truth from an entirely different perspective, I’ve realized how much I overcame from the beginning. The very beginning. I had always known that I had survived inside my mom even after she lost my afterbirth during her 6th month of pregnancy. This is also known as Placental Abruption. I’ve always known that it was suggested I may be born physically and mentally handicap. I later learned what my dad and grandma had been told by the doctor. I’ve always known that I was lucky to have been born into this world at all. There’s an overwhelming sense of peace in learning what I hadn’t understood before in the “could have been or should have been” aspect of me. I always knew I was different from all the kids or adults I had ever known. I’ve always been quite quirky. My mom had always referred to me as perfect. She would say it to me over and over again as I grew and she would tell others that I was as well. It was a standard no one could live up to. In my 20’s I told her to stop saying that to me. I never had any leeway for mistakes and my personality type while A became mixed with other types and traits. My mom and I were extremely close when I was little and my dad was a hard father. I was always held to expectations I never thought I could reach. Both of them couldn’t have raised me any better. I love them for that. I was born seemingly fine, outside of any hard defects and was full term. I was a forceps delivery. I understand now why she told me how perfect I was. I would tell my “different” baby that too. I knew I was born with arthritis and ailments of the neck/spine, but I really didn’t know myself different in that aspect because being born a certain way becomes you. I’ve always had hearing loss, but again because I’ve never been able to hear any other way, I don’t know it to be unusual. My tone of voice as well as the tones I hear are unique. The only time I can tell my hearing is off a little is dependent on frequency and vibrations around me. Sometimes I get louder when sounds are louder. My own voice becomes distorted in my ears by pitch around me. Second grade or about 6 years old is when we learned about my hearing loss. Before that while in the first grade and at another school, I can still vividly remember having to go to speech therapy because I didn’t talk right, or pronounce words correctly. I was a little slow. In that I mean that I was delayed in some learning abilities yet I was also extremely bright at the same time. I was wearing glasses in my second grade photos. I woke up one day in that same year and never needed them again until prescribed for the second time when I was in my early 30’s. I was reading well by the time I was 5 and writing poetry and stories by 7. My ability to walk when I first began was a bit off. I didn’t know that until I listened to my mom tell Dr. Ed Glaser of Sole Supports and the Gohl Program while in Tennessee a few months back. I can still remember my pediatrician always messing with my legs even when my sister didn’t get her legs tested? at our checkups. I’ve always been drained of energy. I’ve always slept too much. My normalcy wasn’t consistent, but neither was my little impairments. Tiny jerks, dozing, sudden lapses, momentary confusion, knowing to go left, or being directed to, and starting to go right. Breathing has always been a problem for me. Not because of any direct lung issues but because of forgetting that I’m suppose to.

This past week I had another Pulmonary Function test. I was asked if I was born premature, I said no. The question was asked in regards to Central Sleep Apnea and the high amount of central events that my last sleep studies revealed from 2012 and 2013. 51 in an hour. The events aren’t recorded as an episode unless one doesn’t breathe for either 6 or 10 seconds at a time, I can’t recall at the moment which for certain. I had 28 Obstructive events in the same hour. I was placed on an Auto Servo Ventilator by RESMED/Philips. The exact model is here.  I quit using my breathing machine some time ago, after my decline in pain management.

I’ve had the aches and pains all my life, but I couldn’t show it. I learned to disassociate myself with anything disabled because I was able. So I held it.

It’s been quite a journey and all I know for certain is that I am product of fetal brain damage, I haven’t been able to breathe since inside my mother and I doze/dream/sleep/awaken different than most.

My mom didn’t do anything wrong in her pregnancy in regards to each reason that can cause CP. There are only 2 that would apply to her as a cause. 1. Multiple pregnancies (carrying more than one baby) and 2. Injury (as in a car accident, etc).


In a recent Facebook post I said

Twinkle VanFleet

“I never believed that disabled children (as you will) should be treated and raised disabled. I believed that they should be nurtured and supported to thrive, loved. I believed that they didn’t need the world on them to judge them. I believed from somewhere deep down inside that “and I posted this to my own son when he was diagnosed finally with a birth defect” I said “Go on as if you never knew you had it”. As I get closer to my truth, I understand why I have those beliefs in me. And I’m okay that.

You’re baby can’t crawl? Don’t put the toy closer, make her/him reach for it. I promise you, most babies will. You’re teenager need a wheelchair, don’t! As a parent you want to ease them, you’ll also cripple them further. You’re kids can’t play sports? Yes they can. It doesn’t matter how slow they are, might be, could be,, it matters that they are playing with everyone else.

I’m not talking about the babies that had to have the wheels in the first place. Had to. Feeding tubes, hard physical/mental. I’m talking about everyone who becomes disabled as a result of not just the illness but the parents who bring them up that way. I was blessed. So blessed that mine didn’t. And I never knew. I didn’t want to know, as it lingered inside me, but you know what? I came up from places no kids will never be. Most babies born like that, or I was, haven’t ever reached my potential. Lauren Wood you were a hard daddy, who loved, but didn’t ever let me be anything other than what you believed me to be, Melody Wood Tresca you are a loving mama, the both of you did right by me. I love you for that.”


I never could see/feel things that most others did. Ethnicity, lifestyles, people, color, differences, etc. I didn’t know if that was natures blessing on me, compassion, or…

One of my friends said to me not long ago, she was telling me about her husband and physical changes, hair. I’ve known them for a long time, I’ve met them in person, and have seen them live. I never realized that he was experiencing what she was describing. I never saw that even though it was right in front of me. To be honest, I had to go pull a recent video to see.

I’ve always loved learning, I can’t get enough. I’ve always loved teaching and passing on what I learn. The last 6 months have been healing on so many levels. I started to want to force people to dislike me because I never really felt accepted right, wrong, or indifferent. There always had to be something I had done wrong even when all I knew was that I hadn’t.

I don’t think it would have made a difference that the world knew my brain is faulty. The problem wasn’t with me it was with humanity, judgement and perception.

Life, love, liberty, lessons,
Faith, trust, intense, impressions,
Hope, laughter, healing, rain,
Cleansing, blessings, clearing pain.
©2017 Twinkle VanFleet

“The placenta nourishes a growing fetus. If it is compromised, such as in placental abruption, the unborn baby may be deprived of oxygen. This can cause stillbirths, premature births, or future growth problems. Oxygen deprivation can also cause brain damage, including cerebral palsy.

When a baby’s brain is deprived of oxygen during pregnancy or birth, parts of the brain may begin to die. This sort of brain damage can result in developmental problems, motor skill issues, and other symptoms of cerebral palsy later in life.” http://cpfamilynetwork.org/placental-abruption/

To be continued

PDF- https://www.gstatic.com/healthricherkp/pdf/cerebral_palsy.pdf

Cerebral Palsy Guide https://www.cerebralpalsyguide.com/cerebral-palsy/

What is Cerebral Palsy https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Definition of Cerebral Palsy http://www.cerebralpalsy.org/about-cerebral-palsy/definition

Fetal Asphyxia https://www.ncbi.nlm.nih.gov/pubmed/9683410

Highs and Lows

I reactivated Facebook and my posts were all positive highs. My lows would come eventually and they did. 4 days ago I began weaning myself from the 30 of Cymbalta to 15, I had already reduced from 60 to 30. I’ll never know until I’m completely off of it again if my choice to do so can be a positive outcome. After more than a half dozen times in less than 2 years of abrupt discontinuation and what the brain itself goes through just to get through it, I have no idea if I’ll ever be what I was before ever starting it over a decade ago. Perhaps I should not have allowed anyone to put me back on it for nerve damage/depression after I was off it for nearly 6 months in 2016. Cymbalta is a Selective Serotonin Norepinephrine Reuptake Inhibitor.

https://www.drugs.com/cymbalta.html

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm150748.htm

When we consider that the chemicals in our brains are altered by the use of these medications, common sense dictates an effect, adverse or otherwise, when removing them from our bodies. The natural chemicals have to work again, or not. It’s not so simple, but it’s understood.

My husband has been in failing health for years. Finally, I think he’s taken to heart the importance of what he can do for himself with or without myself to prevent further illness and even restore that which has already declined.

Sometimes it’s takes doing something profound to make a profound difference. ~Twinkle EKV

Don’t worry my friends it may seem like something is wrong but on the contrary everything is quite right or where it should be right now.

I promised my kids that if I ever felt like going where I had before, I’d do one thing. I did. I kept that promise and they kept theirs. That’s reestablishing trust and commitment.

I’m a little too smart, and a little too dumb to let an opportunity to help someone else pass us by. That’s okay because I love being both.

If I stopped talking about it all the purpose in the purpose itself would fade. That would mean that there would be no impact to make to show people they can physically heal, and when they heal, those emotions can also.

Somebody asked me if I still have a job..

Yes I do,

Until I don’t.

spiritual-healing-image-words-image-source-manifistation-divine

Image Source: Manifestation Divine

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