Learning and Healing

Posted by twinklev

At this time day after tomorrow I’ll have already changed flights to be on my way to my destination. I’m excited to learn and heal even more. This will be the first time since I was 17 that I’ve flown alone. I’ve been on flights since but never without my husband or children. The last Amtrak I was on derailed outside of Fresno California on the way to Corcoran. Initially that trip would have only been Ozra and I. Husband and Kharisma came at the last minute, Rikki was already in Corcoran with my mom and dad. We only sustained cuts and bruises. I can still remember grabbing for my baby as he tumbled and pushing Kharisma into my husband so he could hold onto her. I was the one injured the most but that was a result of my own actions to be sure the 3 of them would be okay. I never feared pain back then. Perhaps because it was acute pain or injury. I think that was mid 1997. My mom and dad were married in 1998 and this was before that. Ozra and I had taken the train several times from Sacramento to Corcoran. I haven’t been on a train since and within 3 years we’d lose our home and everything we worked for in the prior years to a fire, I’d be injured at work and not give birth to our last child due my own body during physical rehab and the medical mistakes and manipulation that followed.

I’m not afraid to fly. I love flying. ~laughs

Ironically the day I leave California, January 8th (2002) is the anniversary of that loss nearly 12 months after that injury that led to CRPS. Maybe I can finally let it go. Maybe.

I didn’t realize until later what the manipulation was all about and that’s why it’s stayed with me. And that’s why I always believed even when my faith was dangling that I wouldn’t hurt hard forever but I’d have to suffer to get there.

I want to help people feel better and find joy and laughter again. I want to be apart of showing others that there is an option for pain relief in MLT and the Gohl Program and I want to be apart of it in person, not solely online. I don’t want to live online. The internet does give a modicum of life back to people who are otherwise unable to have one. I know because I’ve been one of them. The internet also removes in person interaction and that’s why so many of us become isolated and develop social anxiety disorders. I still can’t drive but there may even be possibility in that again.

I have a lot of work to do to reverse 16 years of physical and emotional deterioration. I also know hard isn’t over yet, but it’s the beginning of living something I really don’t know to feel without pain. I’ve used pain as pain relief, a distraction. Pain diverts pain after all.

Looking forward

Image Source: PJ McClure

Packing and Praying

Posted by twinklev

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.

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But maybe she’s right.

To Cut or Not to Cut

Posted by twinklev

A few days before the debut of Hope Is True by iPain in Los Angeles on September 1st, I had about 6 inches cut off my hair. I chickened out on the spot from having it cut shorter and into bangs.

It’s still long and not exactly easy to care for since losing partial feeling in one of my hands, thumb and forefinger. My gripping ability. I haven’t stopped using that hand, in fact, I continue to braid as my own type of physical therapy. I can braid down, but taking them out is more difficult. Having long hair I can twist all of it up as needed. Having shorter hair and bangs may end up being more of an issue since I have spiral wavy locks, so with bangs I’d either have to straighten or … yuck, I’m not sure.

A change would be nice but then you can’t have back what you cut off for a few years. And then my signature look with long braids are hasta luego, too. See ya later. Bye! Adios.

Oh the dilemma!

I don’t want to be in deep doo doo, shit, mierda, you know, ka ka.

But then I’m like shit is just shit and some shit can be cleaned up. Mostly. ~laughing

Choices.

Well shit!

Image source: Redbubble

New Years Eve

Posted by twinklev

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.

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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

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#StrongerThanPain

Blessings

Posted by twinklev

I’ve had a lingering cold going on for a few weeks. Most days not so bad. And then a couple of days ago, wham! Yesterday was so bad. Every ache in my body reminded me of this time last year and I really had to put those thoughts away. I couldn’t let coming off Cymbalta instigate depressive moments and I still wasn’t going to turn back to it just to feel better. I asked my husband if he could stop and get me some Chamomile, Peppermint, lemon and honey on the way back from our daughters. Drank that all day. Coughing, or sudden movement causes a reaction in my right upper side. I kept telling myself it’s just pain, you already know that pain, but I didn’t want to know it, not again, and I started to not be able to handle it. So I asked if they could go get me some therma heat patches. Got that on and went to bed. Each time I moved my back, FML, my arm wouldn’t settle down, moving my neck tore through my shoulder, my fingers were pulsating and going numb before repeating the same sensations over and over. Now what? Took the pillows out from under my head and tried to position my spine enough to relieve all that pressure. Got my arm above my head, left it there, and finally fell asleep.

But then the heat patch activated and I woke up drenched hours later Ha! Slept until after noon time today and haven’t done that but a few times the last 6 months.

Today is still rough, swollen and omg all over, but am managing.

There isn’t anything disheartening in this. Since I’ve been able to maintain my legs enough by stretching and strengthening and other than being sore they’re doing great. I got through a horrible night that last year, too many of them, I couldn’t make it through.

These my friends are blessings.

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2017

Posted by twinklev

I sound like a tease, huh? That’s because I am. 🙂 Sorting out how to start a new life, and be productive in society differently that I had been. Anxiety? Yup. Yet nothing of what it had been from fear of uncertainty and distress.

Deciding what to take and what not to. Not taking this laptop. Don’t need it. Where am I going? For now, just going.

Valerian root is helping. Drinking a lot of water to flush Cymbalta back out of me as I wean off it again. Got me covered on abrupt discontinuation this time.

I’m so happy my kids can just breathe now and my husband will be okay, too.

I have to be blessed for 2016. Without all that it’s been 2017 couldn’t have the same chance.

A brand new journey. One that in time I’ll share more of.

Came out to the porch a bit ago. I do love sitting out here when I’m at the kids. Still the only one up. Am awake early often now. A good thing. In bed really early most nights. E and K are going to R’s today. I think I’m going to stay here and move some files around, continue to watch the shows I have paused on Netflix and I don’t know, maybe a nap. Trying to get rid of a cold. Probably need to up the Vitamin C. Finally my eye is healing yet again. It’s really just become an annoyance.

I was thinking about one more piercing. All of mine represent a significant event in pain. Would love one that doesn’t mean pain at all. If my body rejected it though, I wouldn’t be a happy camper.

I suppose too there’s only one way to find out.

But for now, I need more coffee.

just-breathe

Gohl Program | Thank you!

Posted by twinklev

Last year, I can barely recall Christmas. There’s a few pieces and parts, some of it I’m blessed to remember other parts I’m blessed that I’ve forgotten or have chose not to remember.

8 weeks ago I was at the Gohl Program‘s healing retreat in Loomis, California. Sacramento to most people. 5 days of Manual Ligament Therapy, also known as MLT. 16 years after the injury that led to the 2003 diagnosis of CRPS type 2 and subsequent diagnosis’ since.

If you follow my story, you might understand. I’m so proud of my babies and our grandson.

Rikki, Ozra, Kharisma and De’Mantai

This Christmas ..

Thank you Arik Gohl, Dr. Ed Glaser and Monica Depriest.

There wasn’t a cane, or walking stick. No wheel chair, and no laying down in between family affairs of Christmas.

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My grandson De’Mantai (‘Tai) and I.

I can’t wait until next year.

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.

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.

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December 18, 2016. Right hand, right foot.

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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.