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

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.

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.

Stronger Than Pain

“However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can’t touch us!”

https://www.facebook.com/StrongerThanPain/

Stronger Than Pain Cover

 

IG: Stronger Than Pain

 

Month in Review

The pipes in our sons apartment burst and 4 families were displaced in the quad plex. He’s living in a extended stay in the next city over for 6 weeks. 

Our oldest daughter was hired as a branch manager to a new energy company that will compete with PG&E. 

Dan and Rikki are still working on their new life in Texas. 

I’m taking care of my husband the best I can and him me. 

I was reunited with co workers, friends of many years through my long time bestie of 30 years. We’re all meeting up on the 6th with our husbands included. We’re all original couples, too. 

We all met and began working together, yep, 30 years ago. 

We worked for Mr. Eppie who also founded the popular Eppies Great Race in Sacramento. He passed away a few years ago. I have fond memories of us all volunteering at the major event as well.  eppiesgreatrace.org 

I worked for Eppies between 1987 and 1996. I started as an 18 year old hostess, and advanced to lead serve. I departed as an assistant manager. 

So many amazing memories. 

I’ll always believe that playing softball for Sacramento for so many years prior afforded me the ability to work on my feet for so many years. These would lead to me being able to stay out of a wheel chair permanently in the years to come. 

In 2 months I’ll be back in my kiddie pool in an effort to continue to remain out of one. 

Tomorrow will be a month since I injured my ankle. My CRPS foot. It’s taken a month but I’m healing myself again without medical care. Last time was without too, so was having the flu. I didn’t lay up with the injury, I did take breaks. I used topical reliever, wrapped it in Epsom salts moistened with a dab of water. The worse was the pull behind my knee, back of my leg. Ibuprofen.

February 6, 2018


Today, February 11, 2018

I haven’t been able to wear shoes again yet, other than slippers and my open back orthotic sandals, and that’s okay for now.
Awesome things are happening for Stronger Than Pain. It can take years sometimes and that’s okay, too. Lectures and presentations have already been given, offline. 

There’s just one more thing. We represent suicide prevention, mental health. 

I won’t be bullied in any capacity. Not as a disabled person and not as an abled one. If I allowed myself to be, I wouldn’t be a very good advocate for those who are used, abused and taken advantage of. 

Example. A little girl wears a custom made barrette in her hair to school. Someone else wants it and takes it and let’s everyone else believe it was theirs.

If it’s not yours, you’re not entitled to it. Ever. 

NERVEmber + Goals for 2018

In a Facebook post that read ‘

Goals for 2018
– Continue healing all aspects of myself.
– Continue to learn and utilize holistic remedies
– Continue post Gohl Method protocols
– Start off slow and end big.

 

I could have shared more because there is more. So much more I want to accomplish. Yet because of my inability still to commit, I left it at that. If the above is all I achieve, I’ve achieved it all.

I’ve spoken to several people after me who have been traumatized by the healthcare system. Traumatized in ways that isn’t the logo’s promoted for these services. Humanity.

There isn’t anything humane in treating people, patients so minimally that they feel worse after seeing you than they did when they sought your help. I don’t know for certain if it was the CDC ruling, or the President declaring an emergency on opioids but I do know for certain that inhumane attitudes, remarks, and accusations is not the definition of humanity.

I would have rather had a physician tell me no, dismiss me not knowing what to do for me than have had them assume I was someone I wasn’t.

I’ve spoken to people who did everything right in their care, for their life, and still everything went wrong. A person who is at the top of the advocacy chain, admired by many, and still was treated so poorly that trauma, PTSD has resulted.

Is there a word, a code, a safe word someone can use when we’re so serious about our pain, state of mind,  or knowing better for ourselves that we’re believed?

There wasn’t for me. I reserved that 10 my entire life. And when I used it I was thrown away.

Now other people are experiencing what I did. Prominent people. The only thing I had done wrong if it was even truly wrong at all was self medicate with alcohol after the facts, amidst the denials, delays, and incompetence. This person doesn’t do any of that.

My road is still long but I see an ending for it. I have a long way to go in healing but I know I will. I still have the diseases, syndromes and so forth but because I was blessed with MLT and my own determination, I’m alive.

I’m listening to the NERVEmber posts and as much video as I can grab before my comp shuts down from trying and I hear the people talk about their much needed, lifetime care.

I don’t have that.

Imagine a world with no care from western medicine for whatever reason because it doesn’t matter why. Just imagine you on your own for your life. For your pain relief and your well being. From your symptoms and your uncertainty.

If you can you might understand me. Because I’ve gone through it, I understand you.

It may have taken you a moment to feel me and why I fell so hard, but you do know now because you’ve went there too.

After my decline I asked for 1 year. 1 year to heal myself, progress, find me, learn me.

I thought I would be good a year later.  While my year began October 24, 2016 in a sense it begins toward the end of January of 2017.

It may not seem it from onlookers, but i have come far physically, mentally, emotionally, and spiritually.

I wanted to try to find my way back into some advocacy. for 2018. I don’t know yet.

I’m not certain yet because it isn’t always over when we want it to be. Sometimes it takes a lifetime.

All I know for sure is that I’ve been through and overcome obstacles that many believe aren’t possible.

Stronger Than Pain – Kurtis Ozra VanFleet

Medtronic INC

Arisen Strength – Shane Schulz

Gohl Method – Arik Gohl

You’re my only commitments.

 

I’ll try for you.

 

I start off slow and end big each and every day because I reach a new tomorrow.

That goal is my only priority. My ID isn’t just RsdCrpsFire for the fire of CRPS/RSD. It’s symbolic in living, thriving, the fires that be within ourselves. Passion. There’s always a duality in me.

I currently can’t talk right and for those who understood why I couldn’t 2 years ago, you might understand now. Otherwise, I won’t be sharing why.  Let me just say that if I do any voice, phone calls or videos that I’ll have a lisp. My sound, voice and speech will be altered. I’m okay with it. I have to be. This video doesn’t contain that problem.

Enough said. x

 

 

 

Week in Review

I haven’t so much gotten many breaks this year aside from MLT but I’m much better able to handle the stressors.  The last couple of months has been pulling our home out of foreclosure, my husband returning to work, dealing with loss of insurance and then thinking its merge into covered california coverage would be at least somewhat affordable, but it wasn’t. My previous post about starting PT again was hopeful for a minute. The authorization and appointment was scheduled in days. It would have begun November 2nd. Our insurance ends October 30th. I had already lost care for my SCS and CRPS in February of 2016 this new appointment was separate under Medicare and for my spine only.  Even though I have lifetime medical under Worker’s Compensation it’s not that easy.  My injury was so long ago even physicians who accept WC have declined to take me as a patient.  My previous PMD didn’t get paid for his services for me for 5 years straight until he proceeded to court on it. I understand that a doctor needs to get paid and my adjuster nearly always delayed or denied. I’ve been in the process of closing out that future medical since the end of June 2017. It could take years. It hasn’t provided me nothing.

Our second daughter Rikki and her Fiance are moving to Texas. They’ve sold their home and will be leaving any day now.

Our son was activated for the California Fires (Sonoma) Emergency State Active Duty (ESAD) IC4U Unit. He works for the Solano County Sheriff’s Department and was already driving into it each day for his position securing the courthouse, but then was called to duty.  Ozra is also the CEO and President of Stronger Than Pain so he has a lot on his plate too.  Especially for having not turned 21 yet.

Kurtis Ozra IC4U Unit Telecommunications Specialist

I know there’s a difference between those who’ve fought and who are fighting overseas and in combat zones. Ozra is State side. I’m just as proud because we need help too.  Our devastations need these units to protect us as well. Both of my dad’s served in Vietnam. My current dad (my mom parted from my birth daddy in death in September of 1991 and married her childhood sweetheart years later)  was active in front line combat in the nam. He still has shrapnel in him. He’s both retired military and retired law enforcement. My daughter Rikki served in the Army, her fiance did 2 hard tours including Afghanistan. My husband was Navy for a minute and his father 21 years in the air force, his mama was an original Rosie. He flew them, she built them.  My husbands brother was a Navy Seal, we lost him in 2016. My husband was born in his parents 40’s, they have both been deceased since our early 20’s My dad died 10 months before his dad, and his mom barely 2 years later.  Ozra never met any of them, but I know they know him.

I’m severely behind in trying to catch up on anything internet or social media related. Our internet only became active for ourselves less than 2 weeks ago. Email has been a chore. I’m using an old laptop, so old it doesn’t even connect to certain sites because of browsers being out of date. Can’t update because they aren’t supported with such an old version of Windows. I’m grateful though that I have partial access at least and that’s been good enough.

Our grandson ‘Tai is thriving and our oldest Kharisma is hanging in there.

Currently, I’m working on returning my breathing machine to the sleep source center, cancelling that new PT appointment, and getting my other laptop restored though I’m not as on that as I could be.

My day’s are:

Move my body out of bed

(After sleeping, I’m sore and stiff)

Make coffee

(Do a few stretches using the kitchen counter)

Start home chores

(Have coffee)

Feed my dogs

(Try to feel awake and reduce pain from rising)

Internet and email

(As much as I can however limited from myself or something else)

Rest

(Stretch)

It’s repetitive all day.  Do, naps, do, rest, do and do some Netflix, too.

 

I go to Church as much as I can. Sometimes I go, but don’t stay for group.  It’s embarrassing for me to doze when Pastor speaks. I’m learning better that it’s okay, but I’m not so okay with it yet that I would let me fall asleep on them like that knowing it’s coming.

We start Church with a set of 3 songs and end with 1.  I’m finally able to stand for most of them.   A few times I’ve been able to for all, but not every time.  Progress still.  Of course I pay for my standing, singing, and wish to be with others, but I’ll do it again because I want to that much.

I just restarted PreNatal Vitamins as a source of a once a day with extra in it.  There’s no baby on the way.  Just another alternative to feel as good as I can without those things we sometimes hope for elsewhere.

Until next time…

 

My Natural Alternatives for Pain, Depression and Anxiety.

My natural alternatives for pain, depression, anxiety, pain management, and medication management that I’ve used over the last year that has afforded me an ability to maintain physical pain levels in addition to the emotional secondary conflicts that living with intractable pain has caused.

I look forward to those of you who can provide additional natural or holistic recommendations for myself and others.

Please be advised that any information that I share is NOT medical advice and that I’m not responsible for your choice to consider or use any of the options provided. Always consult with your healthcare team or pharmacist first.

Milk Thistle

Commonly used to detox the body, especially the liver. It can also help control or prevent Diabetes, lower cholesterol and is an antiinflammatory.

Turmeric
Anti inflammatory, antioxidant, treats arthritis and pain related diseases and disorders, including age related chronic diseases. It can be effective as an antidepressant.

Chronic inflammation is known to be a contributor to many common Western diseases, syndromes, and other illnesses. Curcumin the active
ingredient in Turmeric can inhibit many molecules known to play major roles in inflammation.

Curcumin Boosts Brain-Derived Neurotrophic Factor, Linked to Improved Brain Function and Lower Risk of Brain Diseases. Ref: Healthline.

http://www.healthline.com/nutrition/top-10-evidence-based-health-benefits-of-turmeric

For Anxiety and Insomnia- Valerian Root

Valerian root is a common ingredient sold in dietary supplements. It claims to cure insomnia and nervous tension caused by anxiety. Valerian has been used for centuries as an herbal remedy.

It was used in ancient Greece and Rome to ease:

Insomnia
Nervousness
Trembling
Headaches
Stress

Based on the available research, take 300 to 600 milligrams (mg) of valerian root 30 minutes to two hours before bedtime. This is best for insomnia or sleep trouble. For tea, soak 2 to 3 grams of dried herbal valerian root in 1 cup of hot water for 10 to 15 minutes.

Valerian root seems to work best after taking it regularly for two or more weeks. Don’t take valerian root for more than a month without talking to your doctor.

http://www.healthline.com/health/food-nutrition/valerian-root#overview1

I use Valerian both as a hot tea and in capsule form. It’s been quite helpful as a replacement for prescribed medications.

*** If you’re on any medications, please discuss using the Valerian Root with your physician or pharmacist.
Magnesium

It’s believed that magnesium in citrate are better absorbed than sulfate forms.

 

Top 9 Health Benefits of Magnesium

Helps Increase Energy.
Calms Nerves and Anxiety.
Treats Insomnia and Helps You Fall Asleep.
Helps with Digestion by Relieving Constipation.
Relieves Muscle Aches and Spasms.
Regulates Levels of Calcium, Potassium and Sodium.
Important for Heart Health.
Prevents Migraine Headaches.

Dreams– Some people have reported lucid dreaming using it. Being a lucid dreamer already, I love this for myself.

Magnesium Sulfate also known as Epsom’s salt. https://www.everydayhealth.com/drugs/magnesium-sulfate
More info: https://draxe.com/magnesium-supplements/

I use Magnesium in both capsule form as well as drink it in the sulfate form. Yes it’s the same form that we use to soak in baths with. It helps constipation for any reason. In the capsule form it provides natural ease from depression.

Echinacea for immune system support and more. http://www.medicalnewstoday.com/articles/252684.php

Echinacea

Vitamins B12, B1, B6, Calcium, Zinc, Vitamin C are each important also.

Chamomile, peppermint, Lavender, Rosemary, Ginger, Green teas.

Ginger, I shave, cut and steep fresh ginger for it’s anti inflammatory properties and to use for female problems, namely dysmenorrhea. It is a blood thinner too so don’t use it if taking a pharmaceutical that’s also a thinner.

Chia seeds

“Chia” means strength, and folklore has it that these cultures used the tiny black and white seeds as an energy booster. That makes sense, as chia seeds are a concentrated food containing healthy omega-3 fatty acids, carbohydrates, protein, fiber, antioxidants, and calcium.

It truly is a super food. A really good article from August 2nd 2017 can be found on http://www.medicalnewstoday.com/articles/291334.php

I use them nearly everyday. in both food and drink.

http://www.medicalnewstoday.com/articles/291334.php

Kratom

It can be used for pain relief, depression, anxiety and a number of other ailments. It can be used as a stimulant. Each is dependent on dosing. It’s only dangerous if not used responsibly just like anything else. The only effect I’ve ever felt from it is a sense of calming which helped physical pain. I’ve drank it as a tea.

St. Johns Wort. This can cause adverse effects if taken with medications. It can be quite helpful for those who aren’t on any medications. It can interact adversely with other herbs or supplements.  Be safe.

“Some of the most impressive health benefits of St. John’s Wort include its ability to treat depression, improve mood swings, relieve anxiety, reduce the severity of premenstrual symptoms, ease addictive tendencies, regulate hormonal activity, prevent cancer, protect against viral infections, reduce inflammation, and soothe the nervous system.” Ref: Organic Facts.

https://www.organicfacts.net/health-benefits/herbs-and-spices/st-johns-wort.htm

OTC’s

Epsom salts for soaking in order to relieve aching muscles and promote relaxation. I adore the Lavender and Eucalyptus kind and have even added it to my kiddie pool this summer. It provides aromatherapy as well as physical relaxation. It promotes a happy mood. Don’t drink this type though!

Epsom’s salts gel. It’s a topical form of Epsoms and can be applied to painful areas.

Aspercreme with Lidocaine

Thermo heat wraps

Capsaicin
It’s the same ingredient found in chili peppers. It’s hot. It can be helpful for some and adverse to others. It’s actually something I’m not able to use, The heat was severe and I couldn’t even wash it off without it burning for an extended period of time.

Pre natal vitamins are a source of multivitamins in a single dose. Don’t overuse it.

I’m still not able to walk long, but I am able to stay up longer and take more steps. I haven’t been able to run yet and it’s been over 17 years that I have.
I’ve been able to restore some bad posture that was also contributing to pain levels, dysfunction and spinal deterioration. I’ve learned to breathe better by being more mindful to belly breath instead of hold my breath in pain and hyperventilate. My little kiddie pool has been great for me this summer as it has allowed me to move my limbs, bones, muscles, and spine with weightless effort. This has helped me do a little more outside of water.

I’ve restored blood restriction from movement. I’ve reduced discoloration and edema in my CRPS side. I’ve eased a lot of internal organ involvement by using my little ball (A tennis ball learned at the Gohl Program) on my belly in a circular motion minimally a few times a week. Stretching, movement.

You might be thinking how? right now. How can you? How can I? Am I better off than you are regarding pain, crps, etc? Or a need for medication management? Know how many times I’ve asked myself how can I without any? How can I do my routines? The ones that also hurt me. You may be thinking you can’t do  or use any of the above because you’re in too much pain or you simply can’t stand the taste of something. I know. I was on pain relieving medication since the injury that led to my CRPS began. Even before the diagnosis itself. Since day 1. January 26, 2001 and then I suddenly wasn’t anymore. Of course I was dependent. I’ve had the Medtronic SCS since 2006.

I’ve had many people tell me they’re on Oxycodone with secondary Hydrocodone, or an extended release with a another pain medication for breakthrough pain and how they’re still at a 10 in pain.

Imagine that 10 with opioid medication and my “any pain level” without. If you can truly imagine that for just a moment then you might understand why I didn’t want to live anymore and how I became adamant that I wouldn’t.

Food

I do cook more yet 7 days a week isn’t happening. I do make foods in batches to freeze so that my husband has something to eat. So that we both do on the days that cooking is problematic.  Homemade TV dinners.

I have a wheelchair, or should I say had. It’s on my patio ruined because I let it get rained on. I suppose in the back of my mind I still didn’t want it. I have a walker with a seat and breaks, I have it stored away, I have several cane’s, including 4 prong, I’m not using any of them. I lost my walking stick.

I love nature and being outside even if it’s only on my patio in my little pool. I’d encourage you to trade some of that internet time for nature.

When that pain, or any pain rises from any of my issues, I remind myself that I really am stronger than pain and that I survived for a purpose I had never considered before it all. A purpose that isn’t in CRPS Awareness anymore as it had been the 13 years prior. It’s not in finding a cure for something that most likely will never happen in my lifetime or yours but instead helping people live in the here and the now. Change cognitive beliefs that keep the pain state of mind active and replace those with a sense of healing, ability, and laughter. Laughter increases endorphins and endorphins reduce pain if even for only moments at a time.

It’s in raising your well being and supporting your progress instead of glorifying pain.

Moderate to severe physical pain will affect your emotions, your mind and it causes depression and overwhelming feelings of loss whether that be
a career, livelihood, the friends we once had, or who we were before we became chronic or intractable. It’s a constant cycle of stress and a vicious and a continuous 360 of remaining there. Fight or Flight is the stress response. The way you handle that stress response plays a main role in the ability to cope with physical pain. It’s been said for decades that RSD affects the sympathetic nervous system, the
sympathetic nervous is 1 half of the autonomic nervous system, the other part being the para sympathetic nervous system. The autonomic nervous system resides within the Central Nervous System. No wonder RSD is so out of hand. The Sympathetic nervous system is most commonly known as fight or flight. And more recently, fight, flight or freeze. If we’re in a constant state of stress, distress, our bodies regardless of injury or diagnosis won’t heal either. It can’t.

Understanding the stress response

Chronic activation of this survival mechanism impairs health

The news has reported from several media outlets that addiction and overdose deaths affects families and how those poor families are hurting because of the devastating impact it causes. Fair enough! Will they ever report how chronic pain affects families the same way? Or how our families suffer right along with us? I doubt it. Pain of any kind hurts families not just the pain of overdose that has little to do with any pain patient and everything to do with a choice. Even if the choice was made without the ability to understand the consequences. My choice to die and their choice to take too much. Fair? Suicidal ideations is trying to reason and bargain with pain (any kind) as is anyone who throws back that extra and dies from it.

One of my favorite books is Anatomy and Physiology Made Easy. A Concise Learning Guide To Master The Fundamentals by Dr. Phillip Vaughn. I have the Kindle Version. Available on Amazon. It’s an easy read. The other Anatomy and Physiology book I’m reading is a bit more complicated and more in depth. I would recommend the above title as a starting point for anyone without or without pain,  and as an informative tool regarding the human body, and as a stepping stone in order to understand possibility where possible is seemingly over.

So much can be done with a Yoga ball even from a bed.

(Initially this would have been either a Facebook Live or Periscope Live to share with you. When I’m able, I’ll still do a presentation and also demonstrate some of the techniques I use. IE: balls, dog toys, stretching, etc)

I’ve most likely left out other things I’ve done for myself.

Until next time. x

 

 

 

Undeniable Breakthrough

I haven’t written for a minute because I’ve been struggling to maintain a sense of worth and ability while at the same time coming out of the closest remission I’ve ever had. I’ve learned to survive without medication management for pain, yet there are times I wish I had even a 10 count as needed a month of Hydrocodone or Tramadol because it’s hard. I’ve learned and used every natural way I know to help myself.

I know that no physician ever pushed opioids on me and I don’t believe that even though I was dismissed and abandoned that it was personal. I understand they were under stress during that same period of time which just happened to be my worse time.

I never used the 10 on the pain scale in all my years of CRPS or the dozen other pain and non pain related disorders. I reserved that number. When I did use it, when it was 10 it didn’t do me any good because I suppose it’s so overused even the medical community thinks it’s a joke if we do.

The joke was on me.

Overwhelming - Breakthrough

I spent the summer in a little kiddie pool in order to do weightless movement that I wasn’t physically strong enough for outside of water. It really helped a lot. I’ve had a treadmill for about 10 years, an old model and still in working order. I’ve had a stationary bike for approximately 10 years, the ab slider my son sent over a few months back, my yoga ball while about 4-5 years old I only started using recently.

It’s just the treadmill and yoga ball I’m using now along with some stretches, mindful about posture, I learned with having MLT.

I could suck it up and have the spinal surgery, or I can suck it up and continue to do all I can for me still without any of that. It’s been a great stress reliever to not be having monthly PMD appointments, to not worry about whether or not medications will be delayed or denied, to not wait for a lumbar or cervical pain block, to not have to rely on someone or something for relief.

I’ve managed also to better regulate my high blood pressure often 180/+ to restore internal involvement, level off drastic inflammation and swelling for the most part. Today is a swollen day, symptoms extra present, dreading getting on the treadmill, but I have to even if for only 20 seconds. I’ve not made it beyond a minute even on better days.

I use the chia seeds for their anti inflammatory, anti oxidant, fiber, and other qualities. My allotment of vitamins have ran extremely low, so I’m out of some, and have a bit of others left. The combination was helping me maintain better. I feel like ka ka right now and so I know they provided a benefit. Since it’s expensive to buy so many different kinds I’ll be replacing it with Prenatal vitamins this upcoming week. The prenatal (nope, not pregnant) provides many supplements in one for a single price. That’s my best option until I can replace my others. I use fresh ginger as well.

The chia seeds I use as a sprinkle on foods and in water, coffee. In liquid the seed becomes a gel.

Later I’ll be doing either Facebook or Periscope live to share these natural ways of helping ourselves. Especially for those whose pain relief analgesics have been reduced or stopped and for those interested either way.

Do things happen for a reason? Or are they random? I’d like to believe it’s all been for a reason and that reason being instead of advocating and raising awareness solely for cures and information about an illness to instead raise it for HRQoL, suicide prevention and our mental health that will always go with it.

That’s the purpose of Stronger Than Pain.  Helping people live not just share with them all the reasons they never will again but rather all the reasons they can, must, and have to.

Through it all came an undeniable breakthrough.