CRPS and Self-Healing

Posted by twinklev

I’ve mentioned doing low carbs and incorporating physical movement into my daily routine.

I had gone 12 consecutive days with an average of 14 minutes of continuous weight bearing activity. My fit bit actually recorded some of these days as aerobic workouts in addition to active minutes. In order to reach “active minutes” I need to move for 10 non stop minutes.

I recieved my fit bit October 26th, and have 23 days of 10 or more active minutes. 2 of the days didnt record. I only accomplished 2 songs on those days. 6 minutes.

I missed 3 straight days this week, resumed the day before yesterday with 23 minutes, and missed yesterday.

I’m in a flare.

I banged my knee a week ago, and that’s still bruised and swollen. Seems to have set off extra nerve pain. This is the same knee that turns inward when I practice lunges. I had finally gotten to 11 each of those.

I’m a bundle of pain currently. My right shoulder and blade is throwing a fit, and the burning throughout that side isn’t only physically exhausting it’s mentally burdensome.

I considered stress as the culprit too, and at least a contributer and so I started recalling the week. I had a good week! I was excited to cook and began pacing myself in the days prior to accomplish that.

I went to prayer service with my Auntie on Thanksgiving eve. I’ve never been to her Church before. I’m dedicated to mine, yet I know Jesus wouldn’t mind, in fact, he’d be thrilled for me to be with family, too. Even our ancestors would be overjoyed.

If stress caused heightened pain, swelling, and bruising, I’m not sure where the trigger was, or is. I’m sure that stress can reside in the background. There’s no way to avoid it, only manage through it.

I know that my music movement therapy is benefitting me along with stretching and being mindful of stressors that impact any type of chronic pain and illnesses.

I only started this type of movement therapy with music 3 months ago. It was all weightless water therapy previously.

I’ve taken it to a brand-new level. I’m sure my body is thanking me while being a bit angry too. It’s use to what its use too and we’re changing that.

I read a great book a couple of weeks ago and I’ll share more about it soon.

Stop Chasing Symptoms
A unique approach to the causes and treatment of chronic pain

https://youtu.be/xARyDIGh_WE

I’m of like mind with the author, who’s also my Manual Ligament Therapy therapist, Arik Gohl. He’s been amazing support for me since I first met him in October of 2016.

His book also walks the reader through video demonstrations in addition to the written word.

The Gohl Method

It’s been a journey of self healing for 5 years now and if it takes another 5 years that’s ok.

(I started writing this before Church this morning, and in the interim completed 3 songs equaling 14 minutes)

Okay, okay, perhaps the stressor was the extra Thanksgiving stuffing with gravy. 😆

Happy Sunday!

Everything in Moderation

Posted by twinklev

Quote by Oscar Wilde: “Everything in moderation, including moderation.”

It’s good to avoid extremes?!

This quote has been playing on my mind.

I’ve been consuming low carbohydrates since March. I’ve reached my initial goal of losing 35 pounds just last week.

I began Music Movement Therapy in August. I think I’ve previously mentioned that. I needed something to transition to from my Summertime water therapy. I had some worry on me because while I spend as much time as able in my kiddie pool each year during warm and hot weather, the colder months seemed to leave me stranded without that. I would lose much of my benefit that water stretch and movement offered.

I have a stationary bike a few feet away from me, and it sounds odd that I can’t pedal on it without so much discomfort that wanting to try again is actually stressful for me. I can’t seem to go longer than a minute, two at best.

My Music Movement Therapy has at least given me a sprinkle of motivation. I love to dance! And while I wouldn’t consider this dancing, some would. I started with my son’s song California Dreamin’.

I’m up to 3 songs now. A combined 14 minutes. I’m using 2 lb dumbbells and I’m on my feet the entire time. Forward steps, backward steps, side steps, walking in place, lunges. I can’t hold a lunge yet. The weights help me achieve what I’m doing though. When weights are above my head my knee is bent forward, weights come down its back leg stretch. I may not be explaining myself correctly. Hmm. Anyhow, quick forward, quick back. I’ve tried without the weights, but I’m weaker on my feet/legs that way, and stumble, mis step at times.

“Everything in moderation, including moderation.”

I’m not sure if I’m trying too much too soon. I do think that my eagerness to do so is in a positive light. It’s now or never. It’s said that it takes 3 weeks to make or break a habit. I’ve made a good habit to do my songs each day minus only a handful of times I wasn’t able to. Physical strain. I try to avoid the word pain anymore.

No pain, no gain? Use it, or lose it? Such a fine line at times. M o d e r a t i o n.

It’s only been a few months. At this point, I’m not disappointed in myself.

My kiddos gifted me a Fit Bit for my birthday last month. I adore it. My daily steps seem good. It does record other movements as steps and so I’m not entirely certain of actual steps accuracy.

I set it to lose 25 more pounds. 23 to go. If I get that off it would be a total of 60.

If…

I’m 53 now. I can barely believe it! This January will be 21 years since the injuries that led to CRPS occurred.

I feel like this is my last chance.

I’m keeping stressors and triggers at a distance. It’s taken me years now to get to this point. Especially in regard to secondary major depression and anxiety disorders.

If I don’t keep these stable none of this will make a difference.

October

Posted by twinklev

I love Springtime! The weather begins to warm and my water therapy begins. Each of my 3 children are born in March. I always look forward to that time of the year.

October is my favorite color. Beautiful shades of earth. I adore autumn as everything starts to fall away in order to begin again.

It’s cleansing.

It’s also my birth month and not too cold as of yet. It smells refreshing to me.

It’s also time to ride. 🧹

I enjoy the sharing of seasonal memes as a distraction to carry me through the winter, especially the funny ones.

Spanish lessons continue at 504 consecutive days of learning.

I’ve watched several Mexican novelas already. (English subtitles)

I’m fairly sure I’ve mentioned that our Grandson’s Ezekiel and Greyson are bilingual as their first words form.

A few weeks ago I was worried about Summer ending and water PT being over until Spring again.

That’s when I began transitioning to indoor therapy.

I keep telling myself it’ll be worth it. I’ve been here before with this mindset, positive, and I wasn’t able to maintain what I worked so hard for due to a combination of the intractable pain and repetitive injuries.

CRPS, symptoms, and that visceral bone pain is always heightened in the wet, rainy, and colder months.

So far I’m doing as well as I can be with the music movement therapy and with orthotics on while doing so.

I’m praying that I avoid any major flares and continue into the upcoming months without gaps in my routine.

A part of me is so very tired and worn from all the try, try again. A piece of me says this will be the last time. My heart says, yes you will, you always try again.

Feliz martes para ti

Music Movement Therapy

Posted by twinklev

I’ve mentioned many times that I utilize spring and summer for water therapy. I’ve done this for more years than I can count. I even did this in the years prior to CRPS. That was for Juvenile Arthritis.

After our home burned to the ground 21 years ago, we lived in an apartment where a kiddie pool couldn’t be used for 5 years. A year after the fire was my injuries that led to CRPS.

Water has always helped me. It’s light, weightless and I can get movement and stretching in that is otherwise difficult and painful. I’m no stranger to discomfort. My whole life.

I started the music movement therapy August 27th. Low carbs for the last 6 months, and began wearing the shoes with my custom Orthotics in them again on September 7th.

Between swelling, additional injuries, and weight gain I wasn’t able to use them. I couldn’t go up a size because the orthotics are specific for this size shoe. In fact these are the only shoes I’ve ever had them in. 5 years old and haven’t worn them at all since 2018.

Trying again.

Music, of course, generally inspires movement for me even if its non weight bearing. However, the periods of major depression didn’t let me catch that vibe.

I started off with my son’s song California Dreamin’.

I’m up to 2 songs most days. About 7 non stop minutes.

Right now, My main focus is my upper body with 2 lb weights. My arms are effected by my cervical spine.

I’m practicing balance for lower extremities. My truth is that I’ve stumbled, and nearly biffed it several times over since beginning.

My predominant CRPS foot is frequently bruised just from standing, or the slightest bend, and this hasnt helped that any.

Sometimes, I’m really not sure when enough is enough.

The physical try is both beneficial and harmful to my bones. I have to continue to get this weight off and kiddie pool time is over for the year.

It’s just movement to music. Hardly a workout, and not quite dancing. It’s a start and a little more than water PT offered.

2 of my other favorite songs to do are Boogie Shoes and Monday Morning.

I am that old.

Chronic Pain Disrupts Emotions

Posted by twinklev

It does, doesn’t it?

This blog is in reference to:

How Chronic Pain Disrupts Emotions
7/28/2021 By Pat Anson, PNN Editor

https://www.painnewsnetwork.org/stories/2021/7/28/how-chronic-pain-disrupts-emotions

“Chronic pain is more than an awful sensation,” says senior author Sylvia Gustin, PhD, a neuroscientist and associate professor at the University of Sydney’s School of Psychology. “It can affect our feelings, beliefs and the way we are.

“We have discovered, for the first time, that ongoing pain is associated with a decrease in GABA, an inhibitive neurotransmitter in the medial prefrontal cortex. In other words, there’s an actual pathological change going on.”

I hope you read this article by PNN in its entirety.

Earlier this year, I began taking GABA by NOW. It’s for neurotransmitter support. I had read that it could help decrease pain by stabilizing emotions. Oxidative Stress.

Having CRPS type 2 and several other chronic and incurable physical conditions, I acquired major depressive disorder, anxiety disorders and suicidal tendencies along the way.

Standing causes an intense rise in pain which sends my brain into attempting to manage the moment. I’ve been flooded with emotions throughout my days. Positive self talk immediately, “I got this”, “God got me”, “Just one more step”.

When pain is severe those words of encouragement are helpful yet also defeating at times. Our brain still knows it’s stressed even if we play positive tricks for out minds. Depression can still slip through, mood can become or remain unstable, temper may rise, and the list goes on.

Why? Because it hurts that damn bad. We’re not meant to endure such pain.

I do believe that over time our brains rewire negatively. Fight or Flight plays a major role in RSD/CRPS. Stress is our enemy.

For 5 years, I’ve been attempting to heal myself of these accumulated changes, the impact of chronic illness, coping. Brain fog?!

What about all the times we’ve become irritated and annoyed? At ourselves or others? For many of us that’s NOT who we are. It’s understandable that chronic pain would disrupt our emotions to this extent.

The first couple of weeks I didn’t notice any change at all when I started the GABA. The purchase wouldn’t have been a loss. It was reasonable at about $12 on Amazon. As I continued to take it, I began feeling better emotionally. I had been taking Ashwagandha and Valerian Root. Anxiety and Depression can be a bish and these helped tone down those emotions. I’ve been able to skip Ashwagandha. I still use Valerian Root occasionally, as needed.

The GABA hasn’t reduced physical pain at this point. It has though lightened my overall load. It took 10-12 weeks. For me, this is definitely a keeper for the tool box.

I hope this information is helpful to someone. Feel welcome to let me know if you’re already using it, and any benefits you’ve noticed. I’m interested.

I’m including 2 other references that you may find informative.

Putting the brakes on pain: Researchers protect GABA neurons from oxidative stress

https://www.sciencedaily.com/releases/2013/08/130805113430.htm

What Does Gamma Aminobutyric Acid (GABA) Do?

https://www.healthline.com/health/gamma-aminobutyric-acid

I’m not sure if this will cause adverse reactions with prescribed medications. I only use OTC relievers and supplements. I’ve had no negative interactions. Stay safe!

Happy Friday!

Self-Managing Comorbidities

Posted by twinklev

I keep trying to make a positive difference in managing my life for CRPS with comorbidities. I’ve been doing low carbs since March. I’ve attempted my usual summertime physical therapy using a kiddie pool. I do this each year.

Inside the water I can do 20 push-ups! Outside it, zero. In the water, 100 leg slides. Well, that’s what I call them. Outside the water, barely a handful.

I’m always thinking that if I can do enough inside water that it will benefit me outside. If water wasn’t weightless, I couldn’t achieve these.

As far as low carbs, I’m not doing Keto really. I’m just extra mindful of my carbohydrate intake. Generally, staying around 35 net carbs daily.

My kidneys and colon have a hard time with lower carbs. Meat and cheese is my enemy. Our western diets can cause Diverticulosis, or at least contribute to it. I’m sure it contributed to mine. The last time I did low carbs I had intensely painful bouts of Diverticulitis. It took months to settle down entirely.

This time, my right kidney threw a fit. My kidneys are at about 50 percent of normal function. I’ve self managed it fairly well since diagnosis approximately 8 years ago.

I was diagnosed with NAFLD about 10 years ago. I wasn’t drinking alcohol back then.

I’ve already had part of my liver removed for hemangioma, tangled blood vessels. It was during a surgery to remove a remainder of Gallbladder left behind from a Gallbladder surgery a year prior. There’s still more masses on my liver that wasn’t removed.

I haven’t had much pain there since Manual Ligament Therapy in late 2016, early 2017. The therapy was for my CRPS and Spine, but I recieved benefit for other issues, including Gastritis.

Unfortunately, my belly does swell horribly at times, but pain there, for the most part, has been manageable.

I’ve been praying less weight will equal being easier to weight bear. Less impact on my bones. I’ve had Juvinile Arthritis and mild Cerebral Palsy since the beginning of my life.

I don’t know if I had Scoliosis earlier as well, I wasn’t formerly diagnosed with Levoscoliosis until 2016.

What I do know is there’s too many sprains, strains, and fractures, and I’m not entirely sure how to keep them from reoccurring. My muscles are weak. I’ve had vitamin D deficiency for several years, and do take OTC supplements.

Water PT gifts me natural D, sunshine, and nature. It’s a win win when I can get to my patio for it. It’s also my favorite time to thank Jesus for all he does for me, and with me.

Today I remind myself that no matter how it may seem at times, or even how it feels…

I am perseverance; I am resilience.

I am Stronger Than Pain.

Pain Distraction

Posted by twinklev

This is an important piece in my toolbox. More than ever. It’s always been of value. For many years, advocacy, writing, and poetry were my main distractions. These allowed me to be of use, contribute to society, and nudge my mind in other directions. Limiting focus on what I felt.

Laying up in my own thoughts certainly didn’t help whether a moderate or severe flare or an acute injury and situation. Over thinking can be brutal.. Physical illness with chronic intractable pain is a vicious cycle of depression and anxiety rotating in and out of an already weakened state.

It seems like I’ve already spent a lifetime trying to manage and adjust these cycles.

While my plate remains full, most of it has been replaced with better options. Like any plate it depends on what it contains.

At this point, I couldn’t add any more to it or it would spilleth over and that’s where taking on too much happens. It’s a crash waiting to happen for me.

My three main distractions have become routine.

1. Pray. For myself and others.

2. Church. I’ve attended, online, each Sunday for 16 months.

3. Spanish Lessons. 52 consecutive weeks. 415 days to be exact.

Each of these are from home. It’s hard for me to take on more. I do wish at times that I could. I’ve learned not to dwell on that.

All of our food is home cooked. That’s a daily do. I’m grateful to my husband for the day’s he either gives me a break or steps in when I’m physically unable to accomplish it. Our dogs also have to be fed, and cared for, and that’s daily of course.

Physically, I do as much as possible early mornings. By 2 p.m. I’m struggling . Dinner is generally ready and served by 3:30 p.m. unless my husband is delayed at work. By 5:00 p.m. I can hardly budge.

Shoutout to my crockpot for always having my back.

And to each of my grandson’s whom I love dearly. De’Mantai, Ezekiel, Zy’Aire, and my newest, Greyson, who’ll be born this month.

29 Months Alcohol Free

Posted by twinklev

Next Friday, the 18th, I’ll be 29 months alcohol free.

I used alcohol in order to cope with chronic illness, comorbidities, intense intractable pain. I did this especially when pain and associated symptoms were out of control, when medication management was denied or delayed by Worker’s Compensation, and ultimately when I was dropped from pain management of 12 years in early 2016.

I can hardly believe I’ve existed since.

I haven’t blogged in some time. If you’ve followed me throughout the years you know that I was also suicidal in 2016-17 and attempts were made.

2016 is when booze came on board for me with more than a few drinks. In 2017, I had backed off from it again, and towards the end of 2018, I was struggling extra without any health related care or management of pain.

January 2021 was also the 20th year of CRPS 2 and the work injuries that caused it.

By this time though, I reached 2 years of sobriety. (January 18, 2019 is when this part of my journey to abstain begun)

My son gifted me this coin. It’s a heart felt reminder of overlapping emotions, the deepest was letting go.

Letting go of fighting for care was major. I’m not chasing or begging anyone, anymore, ever.

I’ve already done that and it killed me inside to be abandoned and discarded in such pain.

Here I am still, over 5 years later, no medications, no treatments, under no physician care whatsoever, with a broken spinal cord stimulator, progression, and…. alcohol free.

How? Jesus Only Jesus.

Christmastime and the New Year

Posted by twinklev

Its hard to even describe anymore all that it is physically.

I spent the Saturday before Christmas with my son Ozra, daughter in law, Samantha, and 2 of my grandson’s.

It was our Christmas time together.

Originally, I was just going to go, as is. I decided to dress in Christmas colors and present decently.

There’s no affects or filters on this. The sun coming through the window behind me and my table top tree captured a natural moment.

The smile is real as my son was about to pick me up so that I could be with my Grands.

I’m often quite sloppy. I live in pajamas or sweats. Physically it’s a chore. Constant exertion from painful weight bearing.

Sadly, if I dressed each day, dinner and actual chores wouldn’t get done and often times it’s an achievement to have dinner ready at all, dishes done, dogs fed, and the toilet swooshed.

Some might call that lazy, if it was laziness I’d have an opportunity to change that. I don’t know how to change this.

My grandson Ezekiel is their first son, and my grandson De’Mantai (‘Tai) is my daughter Kharisma’s oldest son.

There was goodness in that day.

And then I went low (depression) and that became heightened by other worries.

When the agony hits the mind becomes frail, too.

I didn’t reveal this as it was occurring.

I thought that while we should be able to reach out to one another, and at times I wanted to, some become bothered by us and to those people we’re just complaining.

That’s why so many feel alone.

The stigma is real.

My low is leveling out. I feel more secure in sharing now.

I know that no one could tell at all. I’ve worked hard to face it to make it, yet I suppose fake it to make it still applies at times, at least outwardly. We don’t want to dampen other people’s mood. I don’t want to effect their own mental health.

I had plans to spend New Years Eve with my son, as well.

It breaks my heart that I couldn’t.

His going away party is in 8 days. They move to Arizona later this month.

CRPS has robbed us all of so much.

I do continue to try to focus on what we do have, what I can do, what we have done rather than the pain in it all.

I helped myself through this sending love and prayers around to others and focusing on good things.

For those who can relate, I see you and feel you more than you’ll ever know.

❌⭕❌⭕

Overcoming a Meltdown

Posted by twinklev

It’s been one flare after another. From CRPS to my spine. Back and forth, up and down. Head to toe.

Little relief in any of it. Nights are worse and while I’ve worked hard on trying to get to sleep at a decent time and rise earlier again I couldn’t get in any position so far tonight, which is now this morning, that hasn’t caused additional full body strain and pain.

At the moment, I’m tolerating.

Currently, I’m sitting up, pillows propped behind me and at my sides. I’ve taken every supplement on hand. I’ve had to discontinue Ibuprofen and similar NSAIDS. It tore my stomach up this week. Back to Tylenol.

The last time I had a meltdown was late 2018.

So that there’s no misunderstanding my last suicidal episode was January 2017.

This wasn’t any of that.

I’ve been managing RSD/CRPS, clinical depression/Major Depressive Disorder, anxiety, and other chronic illnesses on my own for years now. I’m still adapting to not having use of my Spinal Cord Stimulator. Non working, still implanted.

Life piles on more than I can handle at times. I know I’m not alone in that. If I’m in a flare when something happens, for example, my husbands 4th heart attack in 2018, my ability to take on both the physical and emotional traumas together can cause each to worsen drastically. In 2018, I picked up the booze again for a couple of months.

This recent meltdown just a couple of days ago was better than previous ones because I didn’t think about ending my life, nor did I consider alcohol.

It was intense bouts of tears, fears, choking on air, snotty discharge, gasping for breath, pounding head ache, panic attacks,, my limbs locking,, and I couldn’t in those moments shut those emotions down by just wanting to. I wish it was that simple.

I prayed. Slowed my breathing, grabbed on to thoughts of good, and objects I could see, and eventually I came out of it. It wasn’t the only one this week. I was overwhelmed beyond description.

There was no anger to lash out in any way.

It’s taken 5 years to get this far.

I do remove myself now a days from many situations, but we can’t remove ourselves from everything. Some things require our attention more than others.

Some situations affect us more than others might especially when loved ones are concerned.

They will always be both my weakness and strength.

Today I’m 1 year, 8 months, and 1 week sober. 💯 percent.

Nope, not today Satan.