CRPS, Loss of Care, MLT Memories

A memory came up in my Facebook today that both made me smile and recall all the amazing moments I had after the treatments. MLT is Manual Ligament Therapy and was performed by its creator Arik Gohl. I attended a 5 day healing retreat in October of 2016. 8 months after losing access to CRPS and Spinal Cord Stimulation pain management care. I had a second set of treatments in late December of 2016 and into the beginning of 2017. I went to Tennessee for 2 weeks. While there I also learned some of the MLT techniques which gave me knowledge of the unique therapy and its process.

I was treated for CRPS and Spinal issues. Degenerative Disc Disease, Degenerative Joint Disease, Stenosis, Thoracic Outlet Syndrome, Radiculopathy. Neck, arms, legs, feet, and spine. All of me. I felt like it relieved my Levoscoliosis too. Some say scoliosis doesn’t hurt. It does! We never get treatment for comorbidities in regular health care. The focus is always just one at a time, if there’s any focus at all. Often times care is advertised as treating the “whole person”. I’ve never had a physician treat all of me. And with WC, it’s not even allowed. You’re not even allowed to talk about anything other because each carrier isn’t responsible for the other. Okay, fine! Understood! But shouldn’t each physician at least know your history? It causes errors with our full bodies.

I’ve undergone traditional Physical Therapy many times since the injury that caused CRPS type 2. The longest was nearly 9 months straight 3 times a week after the period of non weigh bearing/ and the surgery to place the lis franc screw to attempt to repair the fracture and dislocation of my right foot. Another surgery to remove it. This year was 2001.

The repeat of this is for the new readers to the this blog and I imagine I’ll repeat in future blogs.

MLT isn’t traditional western physical therapy. Often times these therapies are the same for each patient. MLT is specifically tailored for individual injuries, illnesses, syndromes and conditions and targets pain relief for the specific individual. It was a gentle technique that restored blood flow, reduced edema, minimized discoloration and so much more.

I had my first suicidal hospitalization just a week before being dismissed from my PMD of 12 years. I was fired for being in distress. There’s no other explanation. The physicians assistant was annoyed prior to ever seeing me that day and which had nothing to do with me and her bad day until she stepped into the office. For one she was upset that Medtronic was there and that took space in her schedule. Those appointments have always been scheduled the same way and for 10 consecutive years.

She was also highly upset at me for telling her what happened and how I tried to reach out to them to no avail prior to the suicide attempt. My dismissal letter didn’t say I did anything wrong at all. I had always been in excellent standing and compliance with them. My physician gave me a lumbar sympathetic nerve block just 2 weeks before that. Odd right? The letter stated “patient-physician breakdown.” She wasn’t my physician, she was his PA and he was on vacation at that time. He was also in the process of selling his practice which became final soon after.

Who knows why it all rolled that way.

My second suicidal incident was less that 2 months after that. I was already having a horribly hard time with pain. My appointment that day was the block followup appointment and to have my SCS checked by my Medtronic rep. I never even got to the point of being able to get an xray to check if my leads migrated. Only the check of the battery at the time which seemed to be working. My rep as always was kind. Today there should be 3 years left on the battery yet it hasn’t worked at all in approximately 18 months.

My attorney of 19 years has been no help at all. I’ve met this man in person just a handful of times. My son took me to him in 2018. I was still trying to re establish care. It is Worker’s Comp. I had retained lifetime medical on my foot, which included my SCS. They just wont approve me care. Nor will the lawyer appeal the denial for me.

When my son and I were there he once again referred to my injury as a sprain. It seems each time I see or speak with him he refers back to the original ER report. Soft tissue damage, sprain/strain. That is true. On the day of the injury that’s what my diagnosis was. It was incorrect though. A misdiagnosis at the time. It was a major fracture with torn tendons from the bones. Yet he’s adamant to refer to it as a sprain, still. That makes me look like I’m trying to get care for something mild, old and done with. This has never been done with.

It was relieved though by MLT and I believe with all my heart I could have maintained that relief and progress if I could have gotten care.

We had asked him to either help with care or move forward with cashing out my claim. That way I could pay for my own treatments. He hasn’t done that either.

The memory that came up in my Facebook today was a live video. Because of MLT I was able to skate with my grandson, 11 years old at the time, for the first and only time in his life. He held my hand the entire time. I did fall seconds after getting on the floor. My legs and feet were strong enough for the carpet but not to actually skate. Best of memories, no matter.

Also in that year 2017 and into a little 2018, I attended Church in person, attended my nieces baby shower, a Project Ride event, 2 days of California Advocacy Day at the Capital with the California Chronic Care Coalition and the National Patient Advocacy Foundation. I attended NAMI Walks in 2018 though I didn’t walk. I was able to be there for my 103 year old grandma as she lived her last days and with family as we raised money doing car washes to pay for her final expenses.

These are major blessings, even miracles, I would have never gotten, otherwise. It was definitely a remission from what I had been enduring all those years prior. A remission that western medicine could never offer.

That did entirely end in 2018 as well.

Today I’m still receiving some residual blessings from MLT. At least I’m alive. While I did have another suicidal hospitalization days after returning from Tennessee, I’ve not had any since.

Why, some may wonder, would that happen after relief. I had no other support, I sought follow up help, I was getting messages from people on social media thinking I left my volunteer position for other organizations, pressure. I left because I was in bad shape, and trying so very hard not to be. To be clear that’s not the reason it happened but it sure as hell didn’t help the pile on. Mainly, I had no idea how. How I’d be able to go on. How I’d be able to maintain myself with it all. How.

I both have and haven’t.

I didn’t just go through the cold turkey withdrawal from the various medications I had been taking, pain rose considerably. Cymbalta was the worse.

Now a days, I’m just trying to live all over again. New. It’s limited, no relief to wake up, or end my day, nothing in between other than the natural remedies I’ve learned along the way. They each contain benefit but not enough to take a major edge off a flare or even calm nerve pain damage.

Magnesium, Valerian Root, Ashwagandha for depression and anxiety. Kratom, as needed for pain, Matcha for a boost. Oil of Oregano, Vitamin C, Vitamin D, Turmeric/Curcumin, Ginger and Potassium. These are what I use most. There are others dependent on the ailment. I’ll share more about each of these in the coming months.

I’ll continue to tell the above stories as its relevant , but at least I have little emotion over it now. It doesn’t hurt me to tell it.

Today’s goal is to get in my kiddie pool for some water PT. I attempted that yesterday and got no farther than trying to fill it.

Try, try again.

Happy Friday!

Practice

I’ve barely used a laptop or computer in years. I have a WiFi only connect laptop but it doesn’t want to actually run on our WiFi. We use a pay as you go plan. No complaints since it is access to the internet. It’s not the highest speed available though. The best part is there’s no getting behind on a bill.

Practice!

I’ve used Windows 10 before yet I can barely recall how to navigate it. I’ll consider this a learning experience. This is a practice blog as well. My recent blogs have been written via a cell phone. Prior to those I hadn’t blogged in over a year.

Here’s something funny. My husband turned this on for me last evening. It would be the first time I’d use it. My son handed it down to me restored. I came over and sat down. I was seriously so confused. There’s 2 icons on the desktop. I glanced at the screen and didn’t know how to start doing anything. I said to him, “where do I get the apps at?” He said, “what apps?” I just wanted to know where I go to get to Facebook, Twitter, here to WordPress. etc . ~laughs.

And then it donned on me to open the browser and go directly to the sites to log in. Ugh at that brain fart.

I’ve been finger picking the cell phone for so long now it’s odd to try to type. I only have partial use of my right hand. wrist and forearm. When using the cell phone I scroll pages and react with my left hand. When using my right hand I use my middle finger. I can feel that one well enough/ It’s my thumb and forefinger that’s the numbest from nerve damage.

I’ve gone from typing up to 80 words a minute with 98 percent accuracy to 10-20 words a minute with less than 50 percent accuracy. Even now as I write this my fingers are bouncing on the keys and the letters keep skipping. I’m excited to be able to try this way again.

WordPress has updated since I last used it on a laptop. It’s much different than the phone app. I’m sure you all already know that. It’ll take practice too. I’m behind a few years in this updated technology.

Facebook is entirely different since the last time I accessed it on anything other than a phone. Ouch! More to learn.

All this will probably take me a year and that’s okay. I’ll squeeze in what I can, when I can. My number 1 priority everyday is making our dinner. It’s wearing but I enjoy it. Dinner has already been started this morning. Crock-pot!

A cup of Matcha to start my day.

Happy Thursday!

Matcha – Benefits

Matcha has become a favorite nearly overnight. It won’t provide direct pain relief, nor is it indicated as such. It is not an analgesic.

As a person who lives with RSD/CRPS, other intractable illnesses, and the various symptoms and co conditions that may result, I hope you find this useful.

One of my other conditions is Narcolepsy with EDS. Excessive Daytime Sleepinesses can also exist in people without Narcolepsy. In addition, Complex mixed apnea. Central and obstructive.

The sleep disorders alone can wreak havoc on quality of living, disrupt plans, and cause delays or cancellations in life as much as chronic illness can. There’s the extra challenge of having both.

I was prescribed Nuvigil for several years. It promotes wakefulness yet is not an amphetamine. I stopped taking it in mid 2018. I do have the remainder on hand for what I might consider an outside emergency and where I would be unsafe to doze or fall asleep in public. Being a fall risk as well, outings are minimal.

Matcha!

Matcha boosts the immune system. This is important for those of us with a compromised system. It’s an antioxidant and can protect our cells against free radicals. It detoxifies by removing toxic substances from the body. Matcha contains vitamin C, selenium, chromium, zinc, magnesium and fiber.

It can be relaxing, provide energy, improve mood and concentration.

It has the potential to lower cholesterol and blood sugar associated with diabetes and heart disease. It’s said to assist in weight loss.

It’s green tea!

It can be used in baking, or added to lattes, coffee, water, and other beverages or food. It has no taste that I can tell.

While tea bags are available, I prefer the powder to adjust my use and options.

Matcha may indirectly ease pain and discomfort by providing a calmer sense of wellbeing and reduced anxiety.

I make no promises there. While it may enlighten my day, it doesn’t make my weight bearing any easier. It does help me achieve my tasks with less stress and fatigue. Added stress as we know heightens physical pain.

I’m not certain of any adverse interactions with prescription or over the counter medications. Please be mindful of this and use caution.

The following is information provided by the web. Search term Matcha Benefits.

Matcha is high in a catechin called EGCG (epigallocatechin gallate), which is believed to have cancer-fighting effects on the body. Studies have linked green tea to a variety of health benefits, like helping to prevent heart disease, type 2 diabetes and cancer, and even encouraging weight loss.

Possible Side Effects.

Although matcha is generally considered safe when consumed in small amounts as a beverage, it’s important not to go overboard. Due to the caffeine content, green tea may trigger certain side effects (such as headache, insomnia, irritability, diarrhea, and heartburn) when consumed in excess.

Happy Tuesday!

My Future Influencer

His little finger says it all. 😂

Ezekiel was due on the 14th of July. Instead, he entered the world on June 27th.

This may have been his salute to 2020 or even his response to tummy time.

Either way, my little grand nugget seems quite confident in how he feels.

Today, he’s a month old.

People sometimes say that children shouldn’t be born in times like these. These are hard times! That much I agree with.

Little children need sunshine, play, and interaction.

I pray we return to what we knew as normal. If not. these babies will grow to know no other way.

They are our future leaders and influencers!

I’ll be nearly 70 years old when he’s 18.

Ouch!

I’ll be right here striving and thriving forward to see that day.

Nana loves you so very much lil E-z!

Breakdowns and Healing

Since my breakdowns I’ve struggled to recover. Before these incidences I was experiencing problems in learning, retaining information, speaking, just to mention a few. I’ve had brain injuries. One of which occurred during the same injuries that caused my CRPS.

The first, fairly mild at birth, yet beginning while I was still in mama’s belly. A cerebral palsy. Forcep delivery.

I always knew I had juvenile arthritis and issues in my neck. I hardly have neck length anymore.

I was barely 33 when CRPS came along. I’ll be 52 in 3 months. My back was also injured in the same incident.

Depression began within the first years of that. Anxiety followed. The continuous hardship of weight bearing.

I can’t really describe anymore what my mind was going through while giving it all I had to walk at all.

In a way, I suppose I was heading for multiple breakdown all along.

I’m a former California Ambassador, Executive Board Member, and Advocacy Director for the International Pain Foundation.

A legislative advocate that testified on behalf of pain patients, authored articles, in the public written record on the then proposed CDC recommendations and on the call that determined what most refer to as the 2016 CDC Opioid Guidelines. I was a member of the Opioid Prescribing Taskforce- Medical Board of California in 2013.

So much more.

2016 the year that I crashed so hard from unrelenting pain.

The year that I also received both the Medtronic Bakken Award and the iPain Patient Advocate Hero of Hope Award.

Great accomplishments. I was also on the very edge and didn’t know to what extent.

I tried so hard to hold on.

I’m perhaps not fully recovered yet from the mental blast that came with it. I am closer than I had been.

I’m still trying to adapt to living without the benefit of my SCS. It has been left inside me no longer working.

My mind swirled with all these things over and over. I have severe medical anxiety now. Just thinking about trying to get help, the times I was in bad shape and needed medical care I couldn’t go.

When my ankle broke 8 months ago my husband said I had to go to the ER. We knew it was broke. I knew I needed to and we went. I had to hide my fears. I was trembling inside.

It was recommended I make a follow up doctor appointment within 2 weeks and request a bone scan. I never did. I managed myself the best I could. I recieved 2 days worth of low dose hydrocodone.

Back to my point of recovery. I can’t stay focused, my writing skills are shot. Everything is everywhere and doesn’t always make sense. It’s not only writing, posting, or texting, it’s verbally too. Especially when my mouth is swollen. The glands at the roof of my mouth pop out. Painful. I try to fake it as necessary. Embarrassing and I don’t know the cause. I know I have bone disease there but the glands or ulcers, whatever it might be, I don’t know.

Nerve damage head to toes though.

I want to advocate again, I want to help others as able, but I can’t commit like I once could. It’s so overwhelming just to get through the day and nights physically. I’d have to have small tasks. Maybe as I continue forward I’ll be able to one day.

I am recovering from what broke me. I’m healing. Ever changing.

We can recover! It doesn’t happen overnight. All the times we hear, “just get over it” when it’s difficult to get over what still exists and is ongoing. It would be different if what we were going through was over and done with. Closure can begin, letting go can happen. Even then there’s a process of healing.

The only thing that keeps me sane is not giving it all too much thought. Otherwise, a replay begins. I can’t go there.

My new grandbabies are my diversion.

When it gets too heavy, I get off the social media. When I see people hurting, I hurt for them, and then with them. It shakes my mental and physical being.

I’m learning proper Spanish rather than the bits and slang I already knew.. I’m moving forward in my lessons well. It can be an extra challenge at times. I have to go back to previous lessons in order to recall. On the bright side, I’m sure some others need to as well.

My new grandson will be bilingual. My son speaks Spanish well and his wife is bilingual so baby Ezekiel will be also.

Please bear with me while I try to make sense in writing, expression, and living outloud.

I do look forward to sharing natural remedies, supplements, herbs, and more that I’ve had to learn to maintain myself the last 4 years.

Until next time…

Voltaren – Now Available OTC

Voltaren Topical Gel which was previously a prescribed analgesic is now available as an over the counter pain reliever.

I looked up both Walmart and Amazon.

Walmart
Amazon

These are just screen shots for information purposes.

Volteran can be helpful for spot treatments and limb relief.

I’ve found that it can take some edge off of RSD/CRPS, arthritis bone, and muscle pain. It was specifically prescribed to me for cervical radiculopathy discomfort and associated symptoms.

I’ve also used prescribed diclofenac under the name Pennsaid. They both offered an element of relief.

What is Voltaren?

https://www.drugs.com/voltaren.html

What is Pennsaid?

https://www.drugs.com/pennsaid.html

I hope this provides you an option to consider.

If you have heart problems, consult your physician or pharmacist before using. It’s been said to cause adverse effects.

Be safe.

Four Forward – Letting Go

It’s been over 4 years now since I was dismissed from my pain management doctor of 12 years. The suicidal hospitalizations. the 4 events.

In some aspects this blog is repetitious to previous entries.

2016 was the year. I spent the following 2 years trying to re-establish care. Finally in 2018, I was able to have my records sent to a new physician. I have lifetime Worker’s Compensation for CRPS, right foot, and the spinal cord stimulator which was permanently implanted in 2006. The internal battery was replaced in 2014.

I was allowed to see this new physician 1 time. He put in 6 future visits for me.

I was sent to a psych as a prerequisite to the physical care. I was led to believe and which is also noted in my records and letters I have on hand that I was required to complete this step. I did.

Worker’s Comp then denied payment for these services and then denied follow up visits with the pain and wellness center.

My attorney of nearly 18 years at that time sent me a letter stating he would not appeal on my behalf.

I felt so done, again.

I began sinking. I couldn’t let myself drown. I held on. I needed my SCS xrayed as there was and still is a possible migration. I’ve had this before in 2009, which required surgery to repair it.

My SCS no longer works at all. It’s been approximately 18 months. My battery should have lasted until 2022.

I had been on medication since the January 2001 work injury that led to the CRPS type 2 diagnosis. A Lis Franc fracture with back injuries. The foot surgeries, nearly 9 months of aggressive PT 3 times a week and then pain management beginning in 2004. Numerous Lumbar Sympathetic Nerve blocks, Functional Restoration Program, various medications to the sudden unexpected cold turkey ziltch of all.

The body can’t take that! Neither can the mind, and the spirit becomes weakened and frail.

I began drinking for pain relief. I’ve done that before. It only lasted about 10 weeks. Only? I know! I felt badly for thinking suicide or alcohol were my only options. My prayers were answered.

Next week, I’ll be 18 months sober again and I’m still on my own. There just wasn’t any help. I refuse to chase after it anymore. Its humiliating, degrading, and demeaning for me to be at the mercy of others for my life.

I had to let go.

A section at a time.

I’ve let it go.

Acceptance.

Health related quality of life hardly exists. Physically challenged, mentally stronger. Temporary periodic paralysis has worsened. I don’t share these things as much as I used to. I needed to let most of that fade away. Having secondary clinical depression MDD, I’m susceptible to lows. It sure does like to try to sneak in, especially during uncontrollable pain.

I much rather help people laugh, inspire through words and music, poetry, offer compassion, and care.

On Color The World Orange Day, November 4th 2019, my ankle broke. My left side, my better side. I stood up from a seated position and pop! I learned from the imaging this side has previously been broken too. While there’s been times that side was too painful also, I never knew. Bone spurs were noted on that side also.

No one wants to listen, we must be whining and complaining. Claiming the owie to be catastrophic. Our advice? Suck it up and take an aspirin.

If this would have happened a year prior, I’d have probably had a drink over it. 2 days of pain medication was prescribed. Honestly, I felt blessed. Only because it could have been 0. I had to consider that a plus for my own sake or I would have dwelled on old emotions in the existing intractable and in the new acute pain.

I figured either the bone deterioration or the 18 years of compensating for my right side with my left side contributed because it just gave way. There wasn’t anything I did or was doing to cause it. I hadn’t even taken a step.

I got myself out of the boot fairly quickly. I was 10 months into sobriety.

Perhaps it was a spiritual test.

If so, I passed!

My son’s formal wedding was less than 10 weeks away when it broke. That became the nudge I needed to heal myself or remain incapacitated.

My 1 year anniversary of letting go of the drink was the same day as his wedding.

Sink or swim. I doggie paddled and that was perfectly okay. I was above water this time and I was winning.

There’s been too many times that something amazing was occurring while simultaneously something painful was also. Family deaths, friends passing on, my husbands illnesses, my own. The joy and happiness for the good was either diminished or lost entirely by those sorrows. Depression.

On my to-do list each day is to not let negativity get too close. I have my routine to maintain my mindset. I’m doing well in that regard, considering.

Less than 2 weeks ago while my new grandson was being helped into the world early, my elderly dog was dying. We rescued him as a puppy and we spent over 14 years together.

My grand baby’s birth and Freedom’s passing was 3 days apart.

I ache over the loss yet the focus on the baby has cradled my heart. Not this time either depression.

Our son Kurtis Ozra and his wife Samantha celebrated 1 year of marriage 4 days after their baby boy was born. Such a beautiful gift they each recieved from one another.

My husband and I had just celebrated our 34th year together. Ezekiel was our anniversary gift too, born 3 days after.

Ezekiel Kurtis VanFleet. Born 6.27.2020.

Journey on…