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.
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.
Our thoughts. They don’t choose us. We choose them.
Living with chronic illnesses and the secondary depression and anxiety disorders that came along with, I’ve often been caught up in my thoughts, emotions.
Today is a day that if I’m not mindful and aware that I could end up caught in one of those emotional traps.
Physical pain is debilitating. The inability to stand from a seated position without severity is overwhelming. I need my legs and feet to lift my back and I need my back to get to my feet.
Negative thoughts try to take advantage of my well-being.
I’m not trying hard enough, I’m not doing enough, I’m a failure. Guilt.
As I said, “try”. They are trying to, but I cannot allow them to. I’m in control.
It’s not true. I’m neither of those. The devil is a lie.
I couldn’t make our dinner yesterday, my husband did it for us.
Today is worse than yesterday. I don’t want him to go to work each day and then come home and feed us. It’s the one thing I do regularly. We don’t do take out, perhaps twice a year at best,, nearly everything here has to be prepared, cooked and served. That keeps me busy.
Did I mention my best friend? The Crockpot?
I got our food into the crockpot earlier. My main goal achieved. If I’m not able to serve it this evening, at least it’ll be ready for my husband to plate.
Team work! Attitude of gratitude.
When a negative thought sneaks in, I immediately replace it with a good one. This doesn’t do anything to relieve the physical, yet it does help to not fall into a major depressive episode and steer clear of suicidal ideation. So far, so good.
After Church on Sunday,, I managed to get a little sunshine. I didn’t spend long on the patio, and only minutes doing water PT. It was too difficult lowering and raising myself. Once in, I was able to lay back on my elbows some but wasn’t able to get up on my elbows from my belly. Bummer! That began another flare. My neck couldn’t take it, and my left arm and shoulder blade rippled with intense pain.
As I was drying off, I reflected on life, as it is. It is what it is no matter how much we rather it not to be. I’ve become as content as I can be with that.
1 Corinthians 2:5
That your faith should not stand in the wisdom of men, but in the power of God.
I just recently started using a posture correcter to help even out my shoulders and hopefully offer relief to the cervical stenosis and other issues there. I swear I can feel my Levoscoliosis actually curve and pull.
My CRPS is weak yet strong. That only makes sense if one considers the toll it takes to endure. Those who have it, know.
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.
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.
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.
My daughter’s and grandson arrived at my parents in Manchester Georgia around midnight on the 15th/16th.
My new injury is healing as well as it can be. It’s heading on a week since it occurred. I’ve continued to use it as normal as possible.I resumed my kitchen counter stretches yesterday.
Nearly a week later.
Since the original injury in 2001, I’ve never been able to roll off that foot. Heel to toe. A little unsteady. I call it clumsy. I haven’t been able to run, but since MLT I have been able to jog in place. I’ve made it up too 100 Steps.
In a few days I’ll re start again at 10. I’ve already been moving my toes as well as ankle raises. My counter stretches yesterday did cause the scrape to tear and bruising to pull. It may have hurt and it could have told me don’t even try. Don’t do anything just keep hurting. Afterwards I elevated. It takes pain to fight pain just like it takes fire to fight fire.
I increased my Turmeric intake and used my topical mix I made for the dog bite. By the way, it couldn’t be doing any better 18 days later.
I briefly mentioned that a physician has agreed to review my records for new patient consideration. His lady is requesting them directly from the adjuster and I’ve also requested that they be sent from the attorney as well.
The Bay Area Pain and Wellness Center is similar to where I was for 12 years. Functional Restoration program, multi disciplinary, ideals I believe in.
I attended and completed a 6 week, full day FRP in 2009. I started within a week of a full revision SCS surgery. Initially permanently implanted in 2006.
If I could have MLT 2-3 times a year I would. What I’m hopeful for is a physician who can assist my rough points so that I can continue to do my home PT, my post MLT protocols and assist me in maintaining my SCS. I haven’t had a provider for it for 2 years either.
I look forward to a physician knowledgeable in CRPS reviewing my records. And this because I was a model patient, in compliance, and I loved my last pain management provider and all those I established great relationships with over the years. I just don’t love that day when I.was let go during the most physically and emotionally unsteady weeks of my life.
What I’ll always be appreciative of is that the lead man at the FRC Mr. Wurster continued to see me and provide LLLT and Bowen weeks after I was terminated at the clinic. After a couple of months I stopped going, I knew he went out on a limb for me and I didn’t want conflict for him. Me, always worried about someone else. I thank him still.
The point is Dr. Levin gave me an LSB 3 weeks before. If I was a bad person or bad patient that would have never taken place. It was my follow-up appointment for that block, my scheduled appointment combined, my SCS integrity check, and to reveal that first suicide attempt 9 days before. Where I had already reached out with embarrassment and insecurity asking to speak with or meet in person the psych staff. No one responded. I know the practice was switching hands and chaos existed. It was no more my fault than it was theirs not being able to keep up on patients.
I’m not sure what I could have done right or better during that appointment to have changed the outcome. Be your own best advocate they say.
2 years yesterday I accepted the Bakken Award in person. I went without any pain relieving assistance, I was withdrawing from Cymbalta and Zonegran hard. I had oral surgery days before. I could barely walk, barely talk, I was dangling on the edge. I wish that entire experience was different.
A month to the day I would choose to bail from this world for the first time.
Really in hindsight it was all meant to go the way that it did because I learned that f I wanted to live, regardless of diagnosis’, regardless of pain, regardless, I’d have to do that by my own self will.
My grandson is celebrating his 12th birthday with his grandparents.
There are angels among us.
His actual birthday is February 2nd. I quit drinking that day last year. After all was said and done, I haven’t misused alcohol since.
I read this man’s story and my heart tugged hard. I have his same diagnosis’ and a few more. Pain hurts.
Some people are under the assumption that I’m either against opioid therapy or that because I’m not using them that I’m some how opposed to them or just not in the same pain or similar need.
I’ve already gone through what so many are going through now. I’ve testified on behalf of pain patients, I was on the CDC conference call that ended up establishing the guidelines. Additionally, my written response is part of the record, too. I did a lot on behalf of pain awareness. I should.have been doing more for myself.
I speak of my progress and healing because people need to know that it wasn’t my choice to be discarded, dismissed, or thrown away. It eventually, after choosing to end my life on 4 separate occasions (after) became my choice to go on without medication management, or Pain Management because what else was I supposed to do? It became my choice to stay.
I still don’t have a provider for CRPS. February will be 2 years.
What I had was MLT right in the nick of time. Next week will be a year since the last time.
What I have now is post.MLT protocols that keep me stable enough. Enough.
Now that I’ve come through it, cleansed my body of all the yuck my goal is to still remain off medications. This is because 16 years of meds regardless of their assistance also damaged my ability to manage myself. Acupuncture, PT, psych aspects to pain is what I’m most interested in. Cymbalta never again.
I reached out via email to another provider today. Not close to my home. Hours away. I’ll figure out transportation upon any acceptance.
Since I began writing this, I did receive a call back almost immediately for my records to be sent for review. PeterAbaci.com
Let’s see how long it takes this time. Early yesterday afternoon I went outside to accept a delivery. I signed for it, received it, and proceeded back inside.
We have a heavy duty steel screen door. I must have swung it too hard behind me to close it before I stepped inside fully and my foot got caught beneath the metal frame and door frame. Ugh at the stinging as I pulled the screen door off my ankle. I wanted to scream, cry and yell out every profanity I knew.
I didn’t do any of them.
I just stood there grabbing the door frame to support my balance until I could make it to the recliner just a few feet away. Pain was loud yet only in my head
I had walked outside in just socks onto the wet pavement.
I didn’t take those socks off or even look and my foot for over an hour after. I had to put myself again directly into the mindset of don’t worry, don’t stress over it, go to your happy places.
I peeled those wet socks off finally.
Dog hair, soggy from outside, yuck.
I did think later, well I won’t be driving to the little store as planned now.
I had re injured myself in May too and fairly badly. I didn’t go get xrays or see a doctor. It took nearly 2 months to fully heal, but I was right on top of it with Epsom soaks, ice, rest and movement. It was the first time in 16 years I had used ice on a CRPS limb. I didn’t really have a choice. Wait! I did. I could have stayed away from the ice and accepted those consequences, too.
I won’t be seeking medical care this time either.
We were invited to dinner with our son and his girl for tonight.
(The majority of this blog was written yesterday, injury was early on the 11th. Last 2 photos were taken earlier today)
As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this. I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.
Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain
I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.
I could feel my head move slightly to the left and then to the right. I was shaking my head no.
While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.
As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.
This is really all I can do and I hope that it’s enough.