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.
Small wins are worth celebrating too. Sometimes they’re the biggest wins of all.
This should remain a daily reminder in all of us who live with intractable pain and illnesses.
Depression has a tendency to latch on when physical pain and symptoms become more severe than average.
I have a hard time when a flare has me at an 8 or above on the pain scale. Mental health declines. I know I’m not alone in that and neither are you.
It feels alone though, doesn’t it?
Celebrate those things you’ve achieved in severity.
If you helped someone else laugh for a moment in their own unrelenting pain, despair and uncertainty take a moment within yourself to acknowledge that you did. Thats ok. It may have been all you could give or contribute.
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.
My Church has been streaming live on Facebook for months now due to the California Shelter in Place orders. When the restrictions lifted they remained online yet returned to in person worship with major precautions in place, briefly.
Our Governor reinstated these restrictions.
Online only again since last month
Due to physical health reasons, I had not attended in person since 2018.
For many, online isn’t the same. It removes being among each other, greeting one another, singing together, comfort and worshipping the word of God in each other’s presence.
For me, its a blessing. I missed not being able to listen to the word, be with the people I’d come to know and adore over many years. Prior to 2017 (My CRPS remission year), I had only gone on Easter Sunday, or for Christmas.
It really lifted my mental health that year and does so once more.
I can be with them this way.
My son Ozra was baptized at 14th Avenue Baptist Church on his 16th birthday, Easter Sunday that year. In 2024 he’ll share his birthday with the resurrection again. It was also Easter Sunday when I went into labor with him in 1997. He’s 23 now.
This is where he formally re married his precious bride, January 2020. It was beautiful. They had legally married on July 1st 2019.
I was baptized Lutheran at Gloria Dei in Sacramento where I attended as a child and a few times into my adulthood. My mom attended their parochial school in her youth.
14th Ave is where my heart is.
My husband and I had our renewal of vows ceremony here for our 25th wedding anniversary 8 years ago.
If you’ve been disconnected from your own Church due to Covid19, you’re welcome to ours.
If you don’t have a Church of your own, you’re also welcome.
For those disabled and ill, you’re welcome most of all.
Pastor Steve does a mid-week word of encouragement via their FB page. I share this and the Sunday live each week just incase you might be interested.
My Sunday Mornings are dedicated to being here. I answer no messages, view pages, or scroll elsewhere during this time.
14th Avenue Baptist is located in Sacramento, California.
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.
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.
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!
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 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.