The Rink

Posted by twinklev

It’s been nearly 4 months since I first started the Gohl Program and underwent Manual Ligament Therapy (MLT) developed by Arik Gohl. You can check out my Case Study Documentation or my uncut documented sessions at Gohl Program TV on YouTube.

I had never skated with my 11 year old grandson. My own son who’ll turn 20 next month has no recollection of ever experiencing anything like that with me. I did take him when he was 2 and his sisters were pre teens, but only I have that memory for him. Ozra was 3 when the injury happened that led to my CRPS. Our girls were 11 and 12.

Night before last we went to pick up our grandson and we went skating. Next time it will be both he and Ozra with our girls, and a few others.

We shared on Facebook Live where I did fall in front of everyone, and I did get back up to try again. Here we are, hand in hand, (Pink blouse up against rail).

I never made it around the rink, but I made it onto the rink several times. I watched as people did all the things I once could also. Speed skate, skate backwards, dance skate. I use to love playing red light green light.

I might not be able to do any of those again, but one day, I will make it around the rink at least once.

No inline skating for me, not now, sometimes you have to start with 4 wheels.

Without MLT this would have never been possible.

Celebrating Life

Posted by twinklev

Spent the night at our son and daughters last night. Wanted to help get a few things ready for our grandson’s sleep-over tonight. A mix of school friends and cousin’s. My girls have stayed in touch with their own childhood friends so ‘Tai has family he came up with regardless of blood.

He’s our only grandchild. Kharisma has never had anymore kids, and Rikki hasn’t ever had one. My daughters for some reason don’t have their “girl thing” but once or twice a year at best. Kind of funny in that all the doctors ask them why. How are they suppose to know?

I can still remember back to when I was going to have a baby for my aunt because she couldn’t conceive. We started planning that. It may have been the release of stress, or simply a blessing because once we did, she became pregnant. She did pass away when their only son was a young one.

In a week I’ll be on only a single medication. Just 1. Nuvigil for Narcolepsy/sleep disorders. I’m not sure if I can let this one go. I love being awake, but I’m already asleep/wake even with it.

I’ve been trying to stay out of politics. Years ago I was active writing for the Independent Opinion on a variety of current event topics. I still have most of those old articles and am considering posting them.

Sometimes we fail to merge all of us, what we do or what we’ve done from one community to the other. For me, it’s time that it’s all okay to do so. There isn’t anything I’ve ever done wrong. I’m just diverse. And with that there isn’t any reason why I shouldn’t other than someone else’s perception of any given thing.

A week before I went to Tennessee my daughter gave me some pants. For about 14 of the 16 years with CRPS I didn’t wear anything denim anymore on my legs. I forced myself into changing that about 2 years or so ago. I did well enough, but I had to keep doing it to get there.

2 of the 3 pair she gave me fit. The other I left at her house because I couldn’t get them on comfortably. A few days after I asked my husband to grab them the next time he was over there, he did. My mom gave me some when we were together and I couldn’t get them on right. The one’s from Rikki are on now. Woot. This means in a couple of weeks the ones from mom will be too.

Of course there’s depression in knowing my body is curving (not the good curves) because I felt it doing so and being caught up in the CDC implementation of those Guidelines prevented healthcare from believing me. We were all just seekers or whiners. I’m trying to embrace it but the fact of the matter is I’m still pissed.

It doesn’t do a thing knowing that one day, after coming so far out of the trenches of pain and weakness that I’ll be there again.

Telling myself don’t go to bed, don’t sleep the rest of your life away, don’t isolate again because of something you’re not ready to handle, but instead get a grip on it for the here and now.

The hardest part I suppose is being better right now and thinking of when that time comes, I’ve let everyone down.

I feel like a wolf who’s been teased with a piece of meat, and if I can feel that way, my family will too when it’s taken away.

Today I’m celebrating life.

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Highs and Lows

Posted by twinklev

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.

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Image Source: Manifestation Divine

Traveling in a Storm

Posted by twinklev

Wow! It’s pretty crazy outside. Flooding expected in several areas.

Evacuations begin as Northern California storm moves in

http://www.sacbee.com/news/weather/article125210414.html

My you know is on fire and some of its corresponding parts. Not that one, the other one. lol

I’ve only slept a few hours off and on. I suppose I can be a zombie. Zombie’s aren’t that bad. Mostly only when they bite! 😛

Will be at the airport around noontime. I really have no idea about checking in, boarding, etc. Have always had someone with me for all that. I know what I’m suppose to do and that’s about it. Hm, well if I can’t figure something out, I’ll just flash a smile at someone and get a wee flirt on so that I can get the answers I need to find out what to do next. Ha!

im-in-a-good-mood-today-ill-be-flirting-with-you-all-shortly-df010

I hope my flight isn’t delayed as a result this storm. I’m taking a jump charger in case I drain my Kindle reading or clicking a game.

I’ll be missing our grandson’s first band recital on Wednesday, but I didn’t know until night before last it was even coming up. Glad they’ll be video taping it for me.

My reduction of Cymbalta is going well. Though I still have the 0 to get to. 3o mgs currently. Still thinking about whether I’ll do that 0 while away or wait until I get back home. Valerian is still helping.

I have my phone set to several alarms in case I doze from sleep disorders. I’m not taking my ASV machine or my SCS charger. I still haven’t turned that back on since October 24th I think it was.

Love my hair cut. It’s weird not being down my back though. Feels like something is missing. Oh wait! There is. 🙂 It was nice that I didn’t strangle myself with it in my sleep. It would get caught in car doors, under my arms, around my neck, in hands. The man can’t get a real good ravel on anymore, but there’s still enough for a good tug. ~laughs

I’ll give our lady who cut it a shout out next time. It’s her shop here in South Sacramento.

I’m most likely going get fondled going through security. I always do.That box in my butt cheek, those leads and all those electrodes in my body and all. Not using any assistive devices. I really need to do this on my own. Worse scenario is I don’t get up tomorrow because I played myself. 😀

Doubt I’ll get much blogging done in the next couple of weeks. Finger picking or using a stylus on my Kindle would take forever. I might put Periscope back on my phone and share a little of my new adventure. I’m not sure yet since I’d have to re-get the app for that.

I told my dog Independence I was leaving. He’s sort of pissed and won’t talk to me now. ~rme’s

It’s fun having fun. I kinda crack myself up.

I should have slept another hour or so and it’s time to get up now. oopsie doodle.

First stop Las Vegas

and then…

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.

heaven

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

twinklev-rsdcrpsfire-new-years-eve-resized

#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.

blessing-clipart-god-s-blessings-clipart-1

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.

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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.