Month: December 2016

Bridge Over Troubled Water

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“Bridge Over Troubled Water”

When you’re weary, feeling small,
When tears are in your eyes
I will dry them all
I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you’re down and out
When you’re on the street
When evening falls so hard
I will comfort you
I’ll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on, silvergirl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
If you need a friend
I’m sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

Blessings

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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

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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!

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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.

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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.

x

Christmas 2016

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christmas-2016-image-credit-psdgraphics

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

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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 September 24, 2015 Bay Area CA_1.

Image Credit by Ozra

Valerian Root

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In January of 2015, I was abruptly discontinued from taking Klonopin 0.5 mgs up to 2 x a day. This was a Workers Compensation denial to continue using it. At the same time I was discontinued on Lidoderme patches and reduced from 90 mgs of Cymbalta to 30. Previously at 120 mgs of Cymbalta. This was the beginning of my major decline. I was already downward spiraling from the 2014 denials and delays. I didn’t appeal the decision.

In January of 2016 I went through the same thing. Finally, I appealed this decision, yet had never received the Cymbalta or Zonegran that I was left with after all the cuts. I had gone to Hawaii to accept the Bakken Award that I had won without the only pain medication I was using. BuTRANS 5 mcg, which had been increased to 10 mcg for the purpose of trying to go, yet I never received it either. The week of my break down I called my pain management clinic of 12 years and let them know I wasn’t well several times. My plea was never answered beyond the messages I had left. I had even asked to speak to the psychologist there. A week after my attempted suicide hold I went to my already scheduled appointment and I told the PA what had happened and how the non opioid medication withdrawal had effected me. I told her that had her report clarified my situation I would have never been denied. This was proven later on appeal which I had won. The appeal was via me and my actual pain doctor there, yet she claimed in later reports she had no knowledge of my denials, delays or withdrawal from those medications. I was fired as a patient.

After the incidents of a couple of days ago, I was concerned for myself. I wasn’t sure anymore again. The impact of what I’m dealing with now couldn’t be just okay. Too many steps to resolve it.

So I went and got Valerian Root. Vitamin B12 sublingual, B1, Magnesium, fish oil, and D3. Thankful to my mom for helping me get these.

What is valerian?

valerian-root

Valerian is a flowering plant, the root of which is dried and used as an herbal remedy.

Valerian has been used in alternative medicine as a possibly effective aid in treating sleep problems (insomnia).

Other uses not proven with research have included treating anxiety, stress, depression, attention deficit disorder, chronic fatigue syndrome, tremors, epilepsy, menopause symptoms, and other conditions.

It is not certain whether valerian is effective in treating any medical condition. Medicinal use of this product has not been approved by the FDA. Valerian should not be used in place of medication prescribed for you by your doctor.

Valerian is often sold as an herbal supplement. There are no regulated manufacturing standards in place for many herbal compounds and some marketed supplements have been found to be contaminated with toxic metals or other drugs. Herbal/health supplements should be purchased from a reliable source to minimize the risk of contamination.

Valerian may also be used for purposes not listed in this product guide.

Source: https://www.drugs.com/mtm/valerian-root.html

For more information

Valerian Root Dosage for Anxiety and Sleep

http://www.healthline.com/health/food-nutrition/valerian-root#2

It’s not just pain I’m trying to heal from but all the trash that came with it. When I’m able to do that I’ll be everything again that chronic pain destroyed.

Maybe.

Choices

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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

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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.

Up Above The World So High

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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.

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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.