Christmas 2016

Posted by twinklev

Christmas 2016- Image Credit- PSDGraphics

The best Christmas I could ever receive is the ability now to use my legs longer, stronger. Longer than just going to the bathroom, more often than just those few minutes at a time. Progress continues. Recovery from pain with the hope to re integrate back into society on a full part time basis. Perhaps one day, full time.Thinking back to the end of August when there really wasn’t any hope left inside me and fear still impacted me greatly. Not because of my legs so much, didn’t think that could be changed as much as it has been, but my spine, neck, arms, my hand(s). How would I do anything losing them? That’s what I had left. In 2013, 4 days after surgery, the second one in a year, I was still trying understand other issues internally. My OBGYN suggested burning the lining off my uterus due to increased thickness. I passed on that and instead chose Nexplanon to control those symptoms. I had it implanted in my left arm so that I could reduce any chance of CRPS spread to my worse side. It worked fairly well until new Ovarian cysts began growing at a rapid rate. I dealt with that with repeated ultra sounds for over half the year in 2015. In 2014 I did though have surgery to replace my internal SCS battery for the next 9 years. Choices. Which was more important. This was. Also in 2015, after a colonoscopy where a polyp was removed from inside there and the diagnosis of Diverticulitis and a few other things, I was suppose to have band ligation surgery to repair those problems. I didn’t have it. I had to have Nexplanon removed due to the cysts. I’ve had ovarian cysts since first discovered during an exploratory laparotomy when I was 22. Not that big of a deal. I did allow that to be recorded and used in teaching hospitals.

I was draining so fast. Physically was one thing already, emotionally became it’s own troublesome dilemma. None of this included family. Husband or children. My husbands recovery from quadruple open heart surgery in December of 2012, or our daughters diagnosis of EHE in 2013 or our sons birth defect diagnosis from Shriners hospital in 2014 or our daughters ongoing appointments at Stanford’s liver transplant clinic, or the other things only a handful of people know at all.

I’ve had 2 documented TBI’s. 1 when I was 17 and the other at the time of the same injury that led to my CRPS diagnosis. In 2013 I was diagnosed by overnight sleep studies with central and obstructive sleep apnea (mixed/complex apnea), cheyne stokes respiration and narcolepsy. I’ve actually had 2 overnight sleep studies and a 2 week at home study using a breathing machine. I was prescribed an ASV unit. Auto Servo Ventilator.

My lower back has been incised twice and my right butt cheek 3 times. Each time over previous incisions. Those things I rarely talk about. Those scars look good though. I sometimes wonder if my belly scar that’s over 25 years old, 10 inches wide or about, torn, and my back scars aren’t contributing to discomfort from scar tissue. Or my belly button due to several laparoscopies over the years and the 4 other tinier scars on my stomach that could be contributing. Maybe not the smaller ones, I have little doubts about my belly and my back because they are front and back to each other. How can anything work right around organs in the space between the scar tissue? I really don’t know. I’ve already had part of my liver removed (2013) and I haven’t had the other lesions on the rest of it checked since. One good thing about the liver is it grows back quickly.

Due to strengthening myself, my internal battery is shifting. It was already fairly low and that’s why I often shift to my left butt cheek when sitting. Otherwise I’m constantly sitting on it. Sore. It’s numb over the scar itself, don’t much feel that, but there’s some intensity outside that area like getting stabbed or socked in the butt all day. I can’t have it checked because I don’t have a provider/physician for my SCS anymore. I have to be careful of abrupt shifting and be mindful not to do anything that will tug the 2 leads on my spine. One of which is center and the other to the right. I also cannot not let it get in the way of healing progress, movement, and all these physical accomplishments.

Earlier this week I took 2 walks 2 days in a row. First time with my daughter Kharisma and grandson De’Mantai. The second time, I was heading off by myself, but took ‘Tai with me. I made it a couple of blocks each way. Without having had MLT (Manual Ligament Therapy) via the Gohl Program, or the custom fit orthotics I might have made that first walk, but wouldn’t have even tried the second. Since summer time, when ‘Tai comes over we do go for a walk. I had already started trying just didn’t get that far. I had to do it around pain being leveled off, not just get up and go. When I had to sit, I’d just plop down on the sidewalk. Ha! Oh and I’m sure my new shoes helped. My feet dislike feeling confined. My toes dislike feeling squished even when they really aren’t.

Yeah it’s good Christmas.

Hoping 2017 becomes a brand new start using all I’ve learned and endured on my path for all the years to come.

Planning Forward

Posted by twinklev

So much to do. Feel much better than the last couple of days having a plan in place now. Not only that I’m distracting myself packing, sorting and throwing things away too. Never know when I’ll be ready to move as previously planned and leave our house to our son. Taking these Vitamins and Supplements should start helping here soon even if it takes a couple of weeks for full benefit.

I contacted someone to help me with these things moving forward. Holistically and naturally to manage the rest of my life. To learn and use what is taught to me by this profoundly knowledgeable master of non western medicine.

Interestingly enough 16 years of CRPS and over a dozen of secondaries as a result and the next 16 years of having a chance to put all or most behind me equals the age I was when the injury occurred that started it all. 32.

I pray to learn how to live without needing anything in healthcare. I hope to learn the ways of nature and embrace what should have never evolved into being what it’s all become.

“A tiny change today brings a dramatically different tomorrow.”
~ Richard Bach, One

I just have to recondition the conditioning placed on us by societal beliefs. I’m already old ways. I’m already of the olden days. Our society believes that respect must be earned. I don’t ascribe to that idea. I respect people upon meeting them. When I meet you, I respect you. From there it can only be lost. To believe that someone has to go out of their way for me to respect them in the first place is ridiculous to me. In the opposite sense for me to have to do something, have something to offer, or be pleasing enough to receive someone’s respect is silly. It means that each of us control another person for respect to be applied, received or rejected.

2 of the definitions of respect is defined as:

esteem for or a sense of the worth or excellence of a person, a personal quality or ability, or something considered as a manifestation of a personal quality or ability:

deference to a right, privilege, privileged position, or someone or something considered to have certain rights or privileges; proper acceptance or courtesy; acknowledgment.

So if someone doesn’t possess these qualities they shouldn’t be respected? I can’t agree. Of course there are people I have a higher respect for than others, but it doesn’t mean someone else doesn’t have my respect because they are somehow less. It’s an ugly world. Even words and definitions are re created to fit a purpose, and often when the words don’t even fit at all.

Everyone should be afforded courtesy until there’s no reason to be courteous. What might a reason be for me? Malice. Malicious intent, and double standards without regard to reasoning or circumstances.

This woman next door? Respect is fairly minimal to none now.

Off to snuggle with my dogs.

Image Credit by Ozra

Choices

Posted by twinklev

Trying to have enough faith in myself to believe I can use all those tools I had learned over the years. I didn’t want to wake up today and when I did I wanted to believe I had just been trapped in a dream for a few hours last night. Then I realized that my husband wasn’t here and if he wasn’t here that meant he did go home and because he was home all that really happened there. I cried so hard my face is swollen today and my left eye is droopy. Ever since that corneal laceration a couple of months ago its different. I was about to say crooked. Oh wait! I just did. Ha!

I went out on the patio, put the headphones on, and danced. I tried to dance it away. And I did for a little while. When I woke up early this morning I did the same thing in the kitchen in between a few stretches. Then I came out here on the front porch and let the sun shine down on me.

I had to think about options. Options to get through the anxiety rushes and waves of intense emotion that I’m not very good at holding anymore. I have to think about OTC’s I might be able to use in order to manage the next few days. I can feel my body tensing and pain rising as a result. My heart thumping in abnormal beats and then I realize I’ve been holding my breath as if I can stop everything that way and then suddenly feeling like I’m on a roller coaster as I breathe again. Every smile I put on when there wasn’t anything to be happy about, every fight I didn’t back down from because I wouldn’t show fear, every obstacle I had to hurdle through because if I didn’t fix it, it wouldn’t get done. Panic attacks.

Funny, everything I knew a year ago, all that knowledge, I don’t even know anymore. The only thing I want to know is that all this turmoil isn’t forever. It’s ridiculously unbelievable that there’s always too much. How do other people handle and cope with too much? I suppose that’s why good people become bad people in the eyes of others. Unconventional coping techniques.

I have to figure out what or what not to do next and accept the consequences in whatever choices become me.

I may be able to save a couple of them but I don’t know who to choose and that breaks my heart.

Off to take a walk…

serenity-prayer

Video Diary | YouTube

Posted by twinklev

I started a video diary of sorts last night. Looking into learning voice recognition software, too. Takes a lot out of me to type. My lower body is doing amazing. My range of motion is incredible. I never held back on that. If a doctor said raise your arm, I just did. Squeeze their fingers, I just did. I didn’t show weakness like that even if I was screaming in my head.

Injuries in the same time period as I’ve been healing? Several. How can someone heal and be hurt at the same time? My perception of them isn’t the same as it was before. I’m not sure yet if it’s because I’m trying to learn my body as mine, or if I’m still disconnecting it as being separate from myself. In any event these injuries and pain that ensues from injuries or trauma hasn’t stopped me from my daily routines of strengthening. So what happened to my hands? I got in a dog fight. Ha! My left hand was bit, photo is 3 or 4 days after. My right hand, I’m not sure. Either mirroring left side, or from nerve root issues from my spine. Maybe. My foot is almost always banged up, but no additional swelling really. It’s actually doing really well considering. Without having had MLT, I highly doubt I’d be handling any of this. In fact, I’m fairly certain that I wouldn’t have accomplished over half of it. I do know that I had already been trying since summer time to strengthen my bilateral CRPS because my upper body had become so bad. Unrelenting on my right side without any assistance in health care at all.

twinkle-v-rsdcrpsfire-right-hand-right-foot-december-18-2016

December 18, 2016. Right hand, right foot.

twinkle-v-rsdcrpsfire-left-hand-december-18-2016

December 18, 2016. Left hand.

I’m going to stick with holistic, or old ways of reducing pain. Healing and progress in body, mind and spirit and I want to learn from the people who practice it, use it, and I want to be someone who can utilize ancient healing, natural remedies, herbs etc instead of what’s just chaos in western medicine.

Still learning YouTube, uploading. Spend a lot of time reading books or articles on my Kindle. I try to get on Twitter to peek about a couple of times a day, and now I’ll share videos as able, but otherwise not too much else related to online.

Pain, passion, purpose, poetry, politics, philosophy and progress is all that’ll be covered in those video diary shares. Mood dependent of course. 🙂 #StrongerThanPain

Each day I find a little more peace in all of it. Maybe one day I can simply be peaceful.

Maybe.

Up Above The World So High

Posted by twinklev

I’m beginning to find interest again in all the things I missed out on or failed to even recognize anymore because of pain, weakness and depression. Yesterday I gazed at the slowly moving clouds in the sky all day. Imagining the heavens above and the cosmos as being the same. Wishing I could fall into them like I do with all the feather and down pillows that surround me when I lay down to rest or sleep. I want to play in those clouds and bask in those feathery plush particles above the earths surface.

clouds-sacramento-december-16-2016-image-source-twinkle-vanfleet

Clouds- Sacramento, California. December 16, 16.

I had believed for so long that my only worth was in the pain communities and legislative matters that affect people in pain. I haven’t disregarded that belief. It’s all part of my story, my journey, but now I’m realizing that I am worthy of more than just pain.

Pain and pleasure.

Quoted from Twitter @rsdcrpsfire December 15, 2016

“I understand now. You don’t know me because all you met was pain. Makes sense because you never met the person without it.”

“I wish you knew no pain. We’d have never met w/out it & bc of that… I’m grateful that I had to hurt too much to be a part of any of you.”

I’ll never be without ailments of one sort or other, too many, but I can be without most of them despite it all.

I want to wake up to new days now and try again even when I go to sleep hurting from accomplishing things I haven’t done in years. The things I do daily to promote strength and healing. Even when the bouts of MDD and SAD have me sliding a little.

I don’t want to be a person only known for pain because I’m not pain.

I’m me.

You might even love this person with less pain, little pain, no pain, in remission, more than you ever loved the person who only felt pain and was destroyed over it.

You might.

That person, whoever she was, was the one on TV, in posters, in the news, published in hard print, audio online, etc and so forth. She’s the one who was a publisher, high management, who was always upbeat, playful, funny, and high spirited even in crisis way back when in order to relieve pain from others. And she did.

Every new day is getting closer to that someday that wasn’t going to be possible again in this lifetime.

Now it is.

Catastrophizing

Posted by twinklev

Rational Expectations

Catastrophizing is an irrational thought a lot of us have in believing that something is far worse than it actually is. Catastrophizing can generally take two forms. The first of these is making a catastrophe out of a situation.

What is Catastrophizing?

Catastrophizing has two parts:

Part 1: Predicting a negative outcome.

Part 2: Jumping to the conclusion that if the negative outcome did in fact happen, it would be a catastrophe.

Three Psychological Mechanisms related to Catastrophizing

Psychology research on chronic pain and catastrophizing has uncovered three types of mechanisms related to catastrophizing

– Rumination – (overthinking. Cognitive Behavioral Therapy technique for overcoming rumination)
– Magnification
– Helplessness

Overcoming Catastrophizing

– Mindful awareness

You have to catch yourself having cognitive distortions to be able to do anything about them,

– Consider Other Possible Outcomes
Consider positive predictions, neutral predictions, and mildly negative predictions, not just very negative predictions.

– Make a Distinction Between Significantly Unpleasant and Catastrophe
Key to overcoming catastrophizing is making a distinction between something being significantly unpleasant and it being a catastrophe. Failing an important exam would be extremely distressing but it does not doom the individual to a life of failure.

– Increase your perception of your ability to cope.
If you believe you can cope with negative events, anxiety will be much less of a problem for you.

Types of Catastrophizing

The common types of catastrophes people tend to imagine include:

– Imagining yourself losing control of yourself. For example, an individual with panic disorder predicts that if they go to the mall on a weekend afternoon, they will have a panic attack. They predict that having a panic attack would be a catastrophe, rather than it just being significantly unpleasant.

– Imagining yourself spiraling into a deep depression.

– Imagining yourself never finding love, and imagining that if this happens you will be plagued by intense feelings of loneliness 24/7 from now until you die.

– Equating some type of mild to moderate social rejection with being totally shunned by all desirable people.

Sources:

https://psychcentral.com/lib/what-is-catastrophizing/

https://www.psychologytoday.com/blog/in-practice/201301/what-is-catastrophizing-cognitive-distortions

Commentary-

Excellent. And if imagination fails to exist? I bet that’s covered in the ICD 10, too.

Wait though, predict?

Hold up!

Ain’t nobody done yet.

Catastrophizing.

Recap

Catastrophizing has two parts:

Part 1: Predicting a negative outcome.

Part 2: Jumping to the conclusion that if the negative outcome did in fact happen, it would be a catastrophe.

Very few people go from jumping to a negative conclusion or outcome to being mindful enough to realize “its” just going to be a catastrophe.

Seriously?

Can I help a little more?

Show me somebody that’s like, “if that really gonna happen” I’m finna have me a catastrophe. Really?

Is that a Cognitive Distortion? And yes I’ve understood for decades that cognitive just means “thinking”. Knowing, perception, judgement, reasoning and cognitive behavior is just… the behavior of thinking in the first place.

Rational or Critical thinking?

Catastrophizing?

Just asking.

Public Apology

Posted by twinklev

I extend to each of you, any of you that I may have offended over the last year an apology. I’m not sorry because I did anything wrong, I’m sorry because I lost control of managing pain. I inclined my head to bullies, I smiled, and shrugged off any compromises. I shimmied on like I never heard, never seen it, and rarely did I admit to knowing it.

I’m really sorry that I let Facebook bring out the worse in me. I’m still trying to understand this for myself. I let it become a “I don’t care” platform to anyone who either stalked me for their own organizations or disliked me for the one I was with.

Reductions in stressers and triggers have me feeling so much better. Better able to continue on with strengthening myself, stretching, moving, healing, accomplishing.

I don’t want to care about what I let you see toward that end, yet I do. I don’t want to care about who you thought I was before it all. I will. I may not always understand why from your point of view but I understand from mine the persona I threw out. I think that I demonstrated fairly well by shoving everyone so far away and eventually giving people a reason to gossip with potty mouth words and pretty photos that I achieved what I wanted at the time. Disconnect.

I never wanted to get close to people, so I kept everyone at a distance. I would reply to the questions regarding CRPS/RSD, Chronic pain, SCS, legislation, depression that you asked, but I’ve not in all my years using the Facebook Platform engaged on a personal level with more than I can count on one hand. Only one person in the pain community knew me, enough.

Wow, I must have issues, right? Yes. I can’t do the gossip, drama, he said she said, did you hear what so and so did type of stuff. Why? Because I haven’t the time or concern for it.

Any relationship can be repaired enough for people to respect that agreeing or disagreeing on something isn’t what defines them, but instead that which allows them to proceed forward with an open mind. Learn from one another.

If was in an IM with only 2 or 3 people a day, exchanging 5 messages each. I’d never be able to do anything constructive, maintain pain levels, scrub my toilet. One has to always be available at some point, even if not on the spot, to reply, and then the conversation continues until it either trails off or is abandoned. For those of you who do engage all day long. Kudos to you. Friendships? Okay. Communication? Okay. Support? Understood.

Facebook; the place you can check into, but hard to check out of.

I’ve been running on empty with anxiety highs and shifting depressive moments this entire year. Trying to manage both chronic pain and narcolepsy evenly for myself. I did do it on my own. No one’s taking that from me.

I can recall pieces and parts of this year as if I was viewing an old 8MM reel of 2016. I can recall vivid moments, yet I’ve lost other memories and I really don’t know if I ever created them in memory to be able to remember.

That’s how the mind protects itself from trauma and perceived threats.

I’m not much different than all of you just uniquely challenged. Some of you the F word is in the first sentence, others, rude, opinionated babble lacking knowledge, certainty, or open mindedness to learn the facts before stating inaccuracies.

Hypothesis? Please do present with an educated guess before assumptions get the better of you.

Ad hominem;

Argue the topic. Don’t attack the person as an individual, you know, the people you judge without even a presumption because you know it all and per your perception they’ve done it all wrong, already? Attack the position, not the person.

Online is too much people at all given times.

Notice how I said “Too much?” rather than “Too many?’

Be good or be good at it! Choices.

Overcoming The Stress Response by Twinkle VanFleet 3/9/15

https://rsdadvisory.com/2015/03/09/overcoming-the-stress-response/

I don’t want to be associated with pain, chronic pain, illness, disability, any of it.

Not on a personal level.

I never did.

My denial was my acceptance all along because I’m still on my legs. I’m not incapacitated. I’m not in that corner by myself yet watching the world move and unable to move with it or be a part of it.

Today I found the wedding vows we wrote to each other when we renewed in 2012 for our 25th wedding anniversary. That was the first I ever walked down the isle to him in a Church ceremony. I’ve been his since I was 17. I got this! For us.

I’m sorry I showed you someone I’m not. I’m not sorry that it wouldn’t be beneath me to act in any type of way dependent on a situation.

I’m sorry too for those who couldn’t ever ask, but assume, and for those who knew they were inciting confrontation when they chose it. That’s where I had enough. That’s where I changed.

There’s consequences in choosing.

For all of us.

~Love and light

Words

Posted by twinklev

Diversity by Twinkle VanFleet

3 weeks solo and trying to decide whether or not to merge all of it here. All of it. The pain, the passion, all that purpose, essays, the filed away lyrics, the unpublished poems, the soft erotica, those short stories, the dances. Dances?

Words.

I’m guessing I’d have to show you, you’d have to read it for yourselves. 20 years of being out there and circulating already.

Expression, adjectives, descriptive, alluring.

Unrelated to the pain communities. Though I suppose that there would be relief, ease, laughter and a sense of distraction in what I could have been providing all along.

No worries.

It’s only just begun.

Again.

The Last 6 Weeks in Review

Posted by twinklev

justlive

It’s been 6 weeks since I completed the Gohl Program. This post will share progress and setbacks since returning from the healing retreat. Hard times dictate choices. A week after returning I lost 3 puppies. 2 of them, I held until they took their last breaths. One of them I held all day. Both of them I gave my own breath to to try to save them. I lost them 12 hours a part, so those 3 days were intense. My son’s car was stolen out of his driveway with important gear in the trunk. It was located abandoned the next day but without the safe.

My mom and dads home burned down.

News 3 Exclusive

Vietnam veteran, wife and granddaughter lose Harris County home in fire
@Ashley_G_WRBL
Published: December 2, 2016, 6:40 pm Updated: December 5, 2016, 9:51 am

Don Tresca Vietnam Vet house Fire (Please share)

https://www.gofundme.com/dbxzr5rw?ssid=835607202&pos=2

My daughter’s liver is still unstable and with little to do for it. She’s been a patient at the Liver Transplant center at Stanford for awhile now and is being sent to their pain management for care.

My husband was cleared for knee surgery though we’re still waiting on scheduling.

In the midst of it all, I’m trying to maintain reductions in pain with physical movement, stretching, and all those things I need to do to recover and strengthen myself further.

Right now, I’m doggie sitting and have been since Monday. Aloha and Gaia came home. They’re Ohana’s brother and sister. They were born on Valentine’s Day, hours after I was admitted to the hospital. They were named from me having just returned from Hawaii a month before. Mahalo and Cupid are no longer with us. Aloha was renamed Legend by his new family and Gaia was renamed Bella. They’ve been together all along and came home as if they never left. They knew their birth place, they knew their den. They were both also reunited with their mother, Oreo. Aloha and Gaia sleep at my head, Ohana sleeps behind my knees, Lilly flower in the crook of my neck and Independence at my feet. Yep full twin bed. Freedom, Amo, and Oreo with my husband.

My CRPS legs and feet are still doing fairly well for what they had become all the years prior and for what they’re becoming. Pain in my arm is much better than before. There really isn’t anything wrong with my arm, directly, it’s referred pain and symptoms from my back, spine. Nerve roots and all that blah blah. I can feel the tug of the curves in my spine and it’s still sort of depressing because I don’t know how to reverse the errors in my own body anymore than I know how to correct the mistakes in healthcare that could have potentially eased it if it had been addressed. The only time my back effects my legs is when those bones shift.

I don’t think most will ever realize the difference in pain levels before and after MLT. That even with these issues the impact of learning what to do for ourselves and how we can decrease additional pain and symptoms simply by a therapy rather than by medication or injections.

After the California International Marathon I was down a few days but that was because I attempted a walk I hadn’t done in 16 years. These few days however wasn’t the week + that activity, events, walking, standing, movement or even stress would have previously caused.

It’s not easy my friends, but it’s getting easier. I don’t have pain medication to turn to for chronic or even an acute situation and I’ve flat out never cheated taking any even when they were in my reach. February will be a year without medication management for pain and related symptoms.

I use sublingual oil and gummies, medicinal, on occasion. I’ve also used Kratom, which has no more risk than opioids when used responsibly.

I still haven’t turned my SCS back on. Not because I didn’t need it a few times but because I’m struggling to not want to need anything. I’m still not using my ASV. I still have no plans on ever being put in a scoliosis brace and I’m still not considering corrective surgery for it.

Wanna live? Don’t rely on others to fulfill it for you.

“Do not ask the stones or the trees how to live, they can not tell you ; they do not have tongues; do not ask the wise man how to live for, if he knows , he will know he cannot tell you; if you would learn how to live , do not ask the question; its answer is not in the question but in the answer, which is not in words; do not ask how to live, but, instead, proceed to do so.”

Page 9 ~Magicians of Gor