October

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

~Dodinsky

Medical Anxiety

I haven’t seen a physician for CRPS in nearly 6 years, nor for my Spine for nearly 5. These have to remain separate. I can’t be treated as a whole person.

Now that my Advocate Son has moved his family back home to Sacramento, I’m considering making an appointment next year for diagnostics. Scans and blood work to see where I’m at with it all.

My Spinal Cord Stimulator and CRPS is Worker’s Compensation. It’s a mess. I was denied continuity of care in 2018 after the patient abandonment in February 2016. I tried to re establish care after that. I was approved for a pain management physician 1 time, and denied any follow-up. My attorney refused to appeal.

I honestly have no idea how to go about this again. If my attorney doesn’t GAF either, what can I do?

This is the part of the fight I have no energy for. It causes my depression and anxiety to worsen.

The thoughts alone provokes panic attacks.

I have no expectations of treatments or care. We don’t live in that world anymore.

I was abruptly dumped without any regard to CRPS and intractable pain by my one and only pain management doctor of 12 years.

The same physician who implanted my SCS, did numerous lumbar sympathetic nerve blocks, and maintained medication management.

My spinal cord stimulator hasn’t worked properly since the physician dismissal. I don’t even know for certain if I’ve had lead migration all along. It doesn’t work at all anymore.

Before it stopped working it was causing me pain. I’ve had it since 2006. A second lead was added in 2009, when I did have a migration then. My battery was replaced in 2014. My leads are original. Even though my 2014 battery was an update, and MRI compatible, my leads are not.

My physician was on vacation when his physician assistant fired me. I had been hospitalized a week before for a suicide attempt. I can barely express anymore how much pain I was in. I was bruised from head to toe that day. Medtronic met me there to do an integrity check on my SCS.

My doctor was also in the process of selling his practice, and most of the office staff I’d known for years had already been relocated to new positions elsewhere.

I had always been in full compliance.  My fire letter stated the reason for dismissal was “Patient/Physician breakdown. That’s it!

I never got to the point that day of an xray referral to check my leads.

That day also began the abrupt discontinuation of all medications. Cymbalta, Zonegran, BuTrans, I can hardly remember any others anymore. I know those experiences are in this blog though. I haven’t been able to go back and look. Cymbalta withdrawal hit me hard. I took it for a decade or more.

I went to an ER, I was sent away from there also. I was still suicidal. The CDC recommendations for opioid prescribing had begun. Nearly every chronic illness sufferer would now be considered a drug seeker. Some refer to this as the CDC opioid “guidelines.”

I don’t have any trust now. I don’t even know how to regain it, or who might be trustworthy. I had trust in a couple of people, but my poor mental health had me push them away. I had to before they hurt me also.

I turned to alcohol again.

I went from being a really good advocate and an advocacy director to losing most of it and giving up the rest.

It took me a long time to overcome the pileup of pain and emotions over it all.

Several other family traumas were occurring simultaneously.

1 Corinthians 2:5

That your faith should not stand in the wisdom of men, but in the power of God.

This!!! is all I had to hold onto.

I’ve learned many natural and holistic ways to managing myself since. There’s no actual quality of life. I’m alive,, yet hardly living.

I have to constantly shift my thoughts to all that is good and stay as focused as possible on those things.

It keeps me from sinking.

This upcoming January I’ll be 3 years alcohol free. I’m not ashamed to speak of this. It was what it was.

Some days are so bad, extremely intense, pain so severe you lose your mind with it and there’s nothing I can do but pray and stay in that prayer.

I’ve always been close to Jesus, …

but this travesty has led me closer to knowing God.

And I’m blessed to know him.

Music Movement Therapy

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

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!

My Son and His Son’s

I shared previously my excitement of being a Nana again.

Many of you know my son from our advocacy days together. Others know him from his music and lyric. Perhaps some of you know both.

Ozra joined me in CRPS/RSD and health advocacy in his young youth. In fact, my oldest grandson did, also.

My son’s hobby is music, writing verse, performing. Expression. He had a severe traumatic brain injury at 14, so I’m quite proud of him. The majority of people can’t tell that he lives with residual damage to his brain. It’s an invisible disability. In addition to the other brain injuries, his frontal and temporal lobes were danaged. He attended speech therapy for some time after his lengthy intensive care hospitalization.

He hasn’t been able to smell since. It’s been 10 years.

His 2 year marriage anniversary was July 1st. His beautiful, loving, supportive wife conceived Ezekiel a few months later and Greyson was within a few short months of Zeke’s birth.

Ozra with his son’s. Ezekiel, 13 months, and Greyson, 1 week. #StrongerThanPain

His school implemented a 504 Plan for him. I never applied for disability for him.

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

He wasn’t allowed to return to school for several months after recovery and healing. He then returned briefly and it didn’t work out. They encouraged the filing for disability and labeling him. Separate segragated learning instead of main stream with all his peers. Nah. This might be a good thing for some children, I don’t know. It wasn’t for us.

I removed him from public school and home schooled him until he graduated high school. He never really attended in person high school. Initially he was a semester behind, yet he recieved his diploma on time.

His teenage years was filled attending Church, youth events, and volunteering. This let him be around people and build his social and communication skills. He did miss out on those high school years though.

Some people were like wow with his first son, and then double wow with his second. My son is 24.

I’m overjoyed!

Times were different but I had 2 daughters 12 months apart by 20. He has 2 sons, 12 months and 3 weeks apart at 24. Perfectly okay.

He’s always earned good money. He began working soon after his TBI recovery. He was 15 then. He earns a good living even now. His wife earns well, too. Team work makes the dream work.

See why I’m proud? And ecstatic?

I can’t help but wonder if I had listened to the school and complied with the status and decisions for my child if my son would have ever excelled in the capacity that he has.

My gut tells me he would not have.

4th Grandlove

I’m a Nana again! In 2020, we had our one and only grandson of 14 years. Now we have 4.

All boys!

Our oldest turned 15 in early February.

Ezekiel and Zy’Aire were both born in 2020.

Greyson was born 2 days ago.

Our oldest grandlove De’Mantai and Zy’Aire are brothers from our oldest daughter, Kharisma.

Ezekiel and Greyson are brothers from our only son and last baby, Kurtis Ozra.

Our second daughter Rikki will most likely never have children. Both of our daughters are in their 30s.

I prayed for this! I can remember being so distraught over my husbands 3rd and 4th heart attacks in 2017 and 2018 that all I could think of is Dear God please give us more grands in our lifetime.

Our oldest grandson lit up our lives. He was born shortly before my husbands first heart attack. The quadruple bypass open heart surgery came shortly after the 2nd in 2012.

Answered prayers.

Ozra’s 2 sons carry on our name, naturally. My son was the only one to carry it when I gave birth to him. There is another now to carry it as well. Our nieces son, our nephew. He has the family name rather than his father’s.

I’ve been physically limited the last few weeks, more so than normally,, and other than 30 minutes about 9 days ago, I haven’t been able to resume my water PT.

My hair was in a braids bun for at least 10 days. Uncombed, messy. Didn’t care. It was the last thing on any to do list. The important things I had no choice but to do. Getting myself to the bathroom was one of them.

The day Greyson was born I soaked in epsoms and combed my hair out. That was a chore of its own. I went to the patio where my kiddie pool is and just embraced the sunshine, celebrating Greyson.

#StrongerThanPain

I couldn’t lower myself into the water, but I sat there in nature thanking Jesus for my blessings. I snapped a selfie so that my new grandlove will know, in the future, that he was my strength that day.

A few people told me I didn’t look old enough to be a grandma. That was kind of them.

I’ve been a Nana since I was 37. I’ll be 53 in about 3 months.

God is good.

All the time

Self-Managing Comorbidities

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.

Adjusting the volume on Pain and Emotions

I’m still sober. As some of you know, I was drinking to relieve pain associated with CRPS, nerve damage, neuropathy, spinal disorders, and a handful of other things. I’ve also mentioned that while it did help some it also worsened my depression.

In heightened pain, I over think. The worse for me is reliving old traumas, or becoming anxious over things I’ll never be able to change.

We’ll never be able to change anything in the past. We can only change today.

During this sobriety, I’ve been struggling to cope with a situation that developed prior to me quitting drinking and has escalated since.

I’ll need to be vague in order to express myself. I’m not able to reveal what it is. Not here or anywhere else.

It’s not something that I’ve done and it’s not directly related to me yet it is a heavy hurt to carry.

I previously spoke of distraction. This is also something I very much need to be distracted from. I feel deeply pained over it and heartachingly helpless.

If this would’ve happened 3 years ago, I’d have most likely had a drink over it. I’d have lost my shit over this much more than I already have.

I’ve adjusted the volume on pain and emotions.

If I don’t keep myself emotionally stable I’m no good to anyone. This much I know. I do minimize often. In this regard, when someone asks how I’m doing, I just say, okay, or something similar, sometimes with playful rhetoric.

Aren’t most of us the same? We have no one to really talk to, who’ll remain loyal. And we often tell one another “You’re not alone”. The problem with that is that while it’s a nice thing to say, many, are in fact, alone. Some people will listen just to gossip or reveal you to others. The person we could trust, we hesitate to reach out because we don’t want to put our crap on them.

Venting doesn’t help and revealing provokes commentary and opinion.

I know I’d have the support of many with love, care and prayer and I also know that the lurkers and stalkers that don’t support or offer kindness for anything, yet watch your every move, would have a field day as if they’re some kind of perfect in there own lives. Some thrive on judgement.

You might wonder how adjusting my volume on pain and emotions help me. It’s the peace comes with it. No drama comes of it.

The downfall is keeping parts of our lives to ourselves and therefore going through things alone.

Sharing positivity, inspirations, funnies, and my grandchildren are generally the best way out of emotional moments for me. On Factbook, and social media, that is.

My physical self just continues to decline. Depression, I have to keep tucked away or honestly I become more depressed. Let’s face it, a lot people don’t much want to be around unwell people. It doesn’t matter if its physical, mental, alcohol abuse or addiction. I can hardly blame them.

The hardest part of this is that I still have no medical help for my life and so I’m limited in what I can do and the main reason I can’t do what I may have otherwise been able to accomplish with medical assistance.

I have no choice but to endure. I just pray that eventually life’s pileups ease and become less frequent.

I need a break.

Pain Distraction

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.

Recovery

Recovery is never owned. It is always rented; And the rent is due everyday.

I speak from experience and of a place where recovery in each of these aspects were bleak for some time. Hopeless.

Recovery from anything is badass. Try, try again, if we must, but let’s not stop trying. Eventually the pain lessons. I’m not speaking of physical pain as that isn’t always possible. Many illnesses, progress. The mental pain, anguish, depression and despair that often comes with, can.

Recovery

I can hardly describe the level of “worn” I had become.

I kept on keeping on though. Trying.

The many years of being a pain patient advocate helped restore purpose from prior years of being bed bound. My Spinal Cord Stimulator permanent implant in 2006 gave me extra life to do so. It may not have been a lot, but it was a lot to me and I was grateful.

The last couple of years I’ve been learning to live without it. I had its benefit for a decade.

Imagine suddenly revising the bit of life it offered to no more or very little once more. That was an ouch on my mental health and I had to recover myself from that loss. I think I’ve mentioned a few times before its still implanted, non working. This year will be 15 years since it first became apart of my body.

For the longest time I found myself adjusting my body to the stimulation that wasn’t on. Habit. I was mindful that it was time to charge my internal battery, yet it wasn’t.

These things may seem odd, but it had been routine for so long.

I’m currently attempting to recover from weight gain. I was doing low carbs in late 2019 when my ankle broke. I fell off that as I was laid up from it for a time being. CoVid emerged and when people were buying and hoarding toilet paper, our only staple became rice. Anything goes with rice. We didn’t have stocked cupboards or pantries full of backup food items. We had rice! The carbohydrates flourished.

I’ve been back on low carbs for about 11 weeks.

Addictions and habits come in many forms. Not all are alcohol or drug related. I know a lot of people with severe sugar addiction. They can’t give it up. In comparison to booze or substances its the same, differently. It creates diabetes and heart disease.

Have you ever heard someone say “at least they’re not on drugs? At least they’re not a alcoholic? I have! Numerous times.

My husband can’t give up his sugar and he has both. He’s had a quadruple open heart surgery and 4 heart attacks. First heart attack at 37 years old and his 4th in 2018 at 51.

Each time he tried and fell back into unhealthy habits.

Is an alcoholic or drug addiction worse than a sugar addiction? I don’t believe so anymore. It’s easy to toss on the stigma for certain groups and minimize the same problem in others, yet sugar kills too. Any bad habit is harmful.

I’m also recovering from his choice to have his snacks. I didn’t want him to. I want him to live. In my own healing, I realized I can’t make him choose better. Only he can do that.

We all, every one of us, has something we do to cope. We all vary. Even Workaholics are consumed by an addiction. I could go on and on.

We have to find our road to recovery within ourselves.

The only person who could help me, or make me stop consuming alcohol was me. You can’t guilt shame people into stopping a bad habit. You know what you really do for them with shaming? Nudge them toward another shot of booze or into reaching for their problem of choice, perhaps a cookie binge.

I use to feel, like many patient advocates had and still do, that drug addicts were the reason that I, an incurable non opioid addict, was denied pain care. That’s not true to me anymore, and it hasn’t been for a few years now.

These people didn’t do this to me. It’s the politics, anti opioid crusaders, PROP, physicians running scared, illicit narcotics, and so forth.

I am still bothered by lack of personal responsibility though. Becoming an addict, misusing, or abusing, isn’t solely everyone else’s fault.

Choice and consequence.

Pain is pain and it’s all semantics anyway.

If you’re sober today, I’m proud of you. If you’re not, I’m praying for you.

Forward in faith,

Journey on.