Weather, CRPS & NO BINGO tonight…

Because of the inflammatory aspect of this condition many of us contend with pain related to weather changes and sometimes we have to beg out from attending social situations due to the pain we are dealing with. Today is nothing I haven’t dealt with before this is not the worse pain I have ever felt, the thing is I am restless, fidgety and I just cannot concentrate. [Been writing this for 3 hours now.] Why? Maybe it has something to do with the changes in the barometric pressure changes that are happening similar to Rheumatoid Arthritis or maybe it is the processed sugars I still partake in from time to time, ok almost weekly recently – and no I really have no room to complain at this juncture because of this, or maybe it is both. Like everyone here I shop at the very same grocery stores, everyone else does, and there is so little for us that is fordable and good for you without a crapton of sugar added. Hidden sugars at that, hidden in that you don’t realize they are there when you eat it but damn it is good. That is the food industries little dirty secret, while you are actively on the warpath against drug addiction and the damage it does to lives they are sneaking in sugar because of its addictive properties that keep you coming back for more. Just like a good junky does.

It is hard to not be bombarded at every turn by that which I know well I should avoid but at BINGO, which is about the only social event I attend with the girlfriends, sells nothing I can safely eat and refuses to allow me to bring in my own. After a while, you realize there are only so many battles you can handle at a time and many times you just give in because it is going to be painful either way and well what the hell. Tonight is BINGO and I have begged out because it feels like an icepick is being shoved into my knee pretty sure it is both the weather and what I have been eating affecting my Complex Regional Pain Syndrome maybe it is neither and I am only deluding myself I feel better making these changes… No, just like the fact you cannot fake this condition and get a diagnosis you cannot fake feeling better with this condition.

Think I will find a Youtube Rabbit-Hole to fall into tonight and give myself a manicure. No polish, I have yet to buy any nontoxic polish. However, I can still control these horrifically dry, cracked cuticles, exfoliate and moisturize my hands. First an at-home spa treatment with a hot, soaking, bath in Epsom salts, baking soda, and borax. While I soak do a Honey&Hemp Oil hair mask and a Coconut&Hemp facial/body scrub. Followed by a slathering of my warming oil from neck to toes and some moisturizing serum I’ve whipped up on my face, then my manicure for sure. My promise to myself and you in turn… There will never be anything chemically based or purchased here in my skincare. You will never start into a read on my blog or get halfway through a video find me saying “Here is the recipe for this and I am all natural but here look at this eye serum I found I just cannot live without. Unless I can safely say it is all natural.” Nope won’t happen. I will always investigate every ingredient to the point that I feel it is a naturally occurring and safe enough for me to give it a try. I will not share with you anything I personally do not use myself.

I AM THANKFUL FOR…

 

I am Thankful (01)
Day 01

This is November, as you probably know it is the month of Thanksgiving and people have started to celebrate the Thirty Days of Thankfulness. However, what you may not know is it is also National Complex Regional Pain Syndrome Month and my birthday. A little backstory here: As a child, I developed the mindset that my birthday was just another day of the year simply because it falls inconveniently right after Thanksgiving and no one remembers it until the day passes or they are still gone on family vacation upon its arrival. Regardless of this mindset, this year is different, maybe it is I am turning 49, my mother-in-law did pass at age 49 and 364 days. Maybe it is that I have regained lost youth, life, and vibrancy that CRPS has sucked from me for the past 7 years, and still takes from me just not like it was, but as my special day approaches there is a bit of extra introspection this time around the sun for me.

#30DaysofThankfulness follow along on 

FACEBOOK | INSTAGRAM | MINDS | PINTEREST

I am Thankful (02)
Day 02

Of course, I think about the obvious… not only about where I am, but where I have come from, and more importantly where I am headed there is then the gravity this year has presented itself with that really gets me thinking. This year started with me in bed most of the first six weeks of the year followed by recuperating from an emergency exploratory surgery and biopsy results I’d kept to myself until recently. Then before I could be well long enough to discuss a trip to see my oldest daughter, her children and significant other; my ex, his wife and meet their son – I am finding out my ex-husband has suddenly passed at age 47 while out and about on an outing alone on the river after a snowstorm. Next, we drove to Idaho to attend the wedding of a close family member only to be systematically uninvited to attend, to then be accused of jilting the bride on social media. Afterward, I spent three weeks with my mom because she got down in her back ultimately throwing me off my feed because it is hard to cook for two-two different meals. She doesn’t see the merit of these changes because she believes she is too old and because she hasn’t discovered her dietary needs, my diet isn’t necessarily the right one for her. Which then took time to rebound from because of my affliction with CRPS. Finally, I say finally at this juncture, we discovered our hot water tank ruptured, flooding our cellar causing not only a headache to clean up but structural damage, as well. [watch the video here]

I am Thankful (03)
Day 03

By this point it is just the first week of October, we still have three months to go and I am shaking my head wondering if this is the end or just the beginning. Despite everything I have endured and all that has occurred just this year alone, I am determined to be as positive as I can, to not be cynical or sarcastic. Which might be a stretch for me, if I were… to tell the truth. Oh, wait that’s what I just did. I am hell-bent to continue to keep my pain to a minimum by all means necessary and at my disposal. We already know it will react though not giving it a physical reason to start is a really good place to start in my opinion. So, besides diet and limiting chemical exposure in our daily lives, I must keep the emotional state “ZEN”.

I am Thankful (04)
04

To do that introspection into a more positive way of thinking is my next step then off to pampering me because as I mentioned it is my birthday, I am not getting any younger and all those compliments of “Your skin is so beautiful.” are only going to slow to a stop if I don’t take care of what I have. Watch for how to reproduce my careline and beauty tips to come. I must admit taking care of myself, my body inside and out has been one of the last things on my to-do list until – you guessed it – until CRPS.

At the beginning of my illness journey, I was looking to medicine to fix me through therapy or surgery or even that magic pill or shot. That is what medicine is for, isn’t it, to fix what’s wrong with us? Today, I realize that medicine in all its modalities is a plethora of money-making schemes. Yes, I said schemes short of using the word Ponzi in conjunction with the word scheme I am accusing medicine of being a money-making model based upon the ideals and teaching where the symptoms are managed, the patient’s concerns are only quelled not relieved and the word “CURE” is a threat. Being the absolute farthest thing from what medicine is designed to do. Of course, that is not to say you should utilize my opinions, theories, and ideas in place of a licensed professional opinion, I still attend doctor appointments myself discussing what I am doing with him. Talk to your licensed professional collaborate over alternative options. If it isn’t something your doctor believes will help because it isn’t taught in his books, thousands of years of historically helping individuals and the fact that western medicine root is based in what is now alternative medicine, help to change their mind through the examples myself and others are sharing openly to spread the word of hope instead of the hopelessness we have been left with by medicine.

But for now, here was the start of my Thirty Days of Thankfulness I would like to invite you to follow me on social media, I am also challenging you to not wait but to start a list your own today, it is never too late to start or start over.

 

Organic Research

I started this journey with nothing more of a game plan than to discover what was wrong with me and then to fix it. Because of this, I have discovered, rediscovered, expanded and incorporated ideas and theories, both old and new, which I’ve allowed to evolve within me. A while back I started this random blog post that I didn’t publish until just the other day titled I AM: ELECTRIFYING, throwing around the idea the body and its natural occurring electricity is powerful. I didn’t publish at the time because I thought what I was saying to have no intrinsic value, be irrelevant to the subject matter of getting healthier or living a fuller life and yet over time, I started discussing with my collaborative team, and that would be me, myself, my husband, & I, the idea our bodies are, in fact, batteries. Only to, later on, find videos with scientific data to back up those very ideas.

My thoughts are if I get things running optimally, all else will fall in line. With nothing for the condition to attack or attach to there can be no symptoms and just like before I knew I had this disease… effectively, I am cured… Right? No. It doesn’t. I may achieve remission but the reality of it is I had this before I knew it, or … Or what? Or it was acquired and no one is saying I acquired it. Therefore, I had it before I became afflicted by it. But what if it was acquired? What if it was actually engineered? See, I ask these question because I fell down a rabbit-hole of “Phage” last night.

Cyanophages
source – Sullivan MB, Coleman ML, Weigele P, Rohwer F, Chisholm SW. Three Prochlorococcus Cyanophage “Phage” Genomes: Signature Features and Ecological Interpretations. PLoS Biology Vol. 3/5/2005, e144 doi:10.1371/journal.pbio.0030144

Yep, I thought the very same thing… “what the phage?” is that. Apparently, they are what we have depended upon for hundreds of years to combat bacterial infections and what we are starting to return to as more and more bacteria become antibiotic resistant. I discussed earlier the body being a bioengineered vessel… What if it really were and what if the hundreds of thousands of viruses and diseases were too? What if some of them were designed to aid the body and what if everything modern western medicine was teaching us was in direct conflict with these designed mechanisms? What if everything we are taught about modern medicine was completely wrong and is actually manufactured to make a fortune off of individuals like you and me? Then maybe we should be looking at the treating physicians with more decerning eyes.

So let’s talk about phages, where they come from, how we got here to this phase of medicine and where we could go from here with the knowledge. What does the word phage mean? Well, it is a shortened version of the Greek word bacteriophages meaning “bacteria eater,” Where do they come from? They come from the environment and they are abundant everywhere, in dirt, the oceans, ponds, even the sewer  — they are found in any form of life harboring their target. What do they do? It is the responsibility of the phages to balance things. If the phages are out of balance so is the environment within which the phage is found.

26220691_2038813143065371_6476609320005879144_o

Because a cocktail of phages cannot be patented due to the state of its existence being natural versus created another company could come up with a similar cocktail finding it just as effective and as such, there is no money to be made in it. Antibiotics, on the other hand, are designer and the lucrative logical business decision. But at what cost? Ultimately our health. Many are turning to the former Soviet Union country of Georgia where the practice of the use of phages is standard medicine with a historical track record of over 80 years treating patients with various conditions like acne, bronchitis, cystic fibrosis, lung infections, colitis, Clostridium difficile, Lyme, skin infections, intestinal infections, dysbiosis — and most types of bacterial infections as well as sinusitis and non-healing wounds. When applying a holistic, integrative approach to the treatment of chronic patients not only is the infection cleared but also the patients’ general health is significantly improved.

What could this mean for individuals such as myself and others? Granted we don’t think CRPS is bacterial related but what if phages were still related somehow to the function of the body. Do we not fight prolific candida overgrowth throughout the body? I get that it is a fungal infection but an infection none the less. Maybe phages are not the answer specifically but understanding them may lead to something. I’m about balance and letting nature take it’s course whenever possible, I believe nature, as we know it, has the answers to our health concerns. Take for instance the understanding that medicine came from the use of plants to heal, the body has the ability to heal itself with positive energy and you open a door of healing that may have more possibilities than even I can dream of. I believe God gave us this Eden and in it is all we need.

A little side note here: Interestingly enough, fifteen years ago my husband and I discussed the very aspect of allergies in the children of our kids’ generation. We surmised, without evidence, I might add, the problem was the sterile environment we were raising our children in and the lucrative germophobia plaguing our commercial world. We believed, that keeping children away from dirt was of more harm to them than good. Today, everything is resistant, basic soap and water with a towel to dry is preferred to antibacterial solutions and hot air drying and I am discovering my very thoughts all those years back were right on track with the current science being presented. Maybe peaking before “Season” has its benefits.

Sources

https://medschool.ucsd.edu/som/medicine/divisions/idgph/research/center-innovative-phage-applications-and-therapeutics/research/Pages/default.aspx

http://www.phageinternational.com

https://www.phagetherapycenter.com

https://news.sky.com/story/jet-air-hand-dryers-spread-viruses-and-bacteria-study-finds-11492305

 

SCS Implant, Failure, Explant, & Residual Pain

December will be two years since removal and I thought that by now the pain and discomfort associated with the spinal cord simulator after ex-plant would have begun to ease. Don’t get me wrong the severe pain, the inability to bend over and stand up without being physically aided is no more but this residual ache, this constant piercing pain persists.

As I sit here each night unable to sleep because of it I think back on the whole ordeal and how I tried to express to the doctor how painful it was and wasn’t improving any at each appointment after the implant. I tried to explain I couldn’t move, sleep, stand, sit nor was the device providing any relief. I tried to explain to him the device vibrated my stomach and made me vomit. I tried to express to him the quality of life I was told I could have by implanting was the opposite. More importantly, it had taken away from me what mobility I did have left after the Complex Regional Pain Syndrome began to attack.

He told me… We need to dial it in aka reprogram it, that didn’t help. He told me we needed to try again, still no help. Finally, with no test, no diagnostic examinations, nothing… he wrote in my medical records I was exhibiting pill seeking behaviors at my mandatory “medication refill” appointment after I inquired as to the mailed status of said prescription. Remember today I am almost medication free because I choose to be through my lifestyle changes and not because I have failed to meet my pain management contractual agreement.

Spinal Cord Stimulation - Indications, Safety, and Warnings _ Medtronic - Google Chrome 10_28_2018 6_13_49 AM
I effectively became a “DNR” at age 46 because of a device to improve my quality of life.

Back to our timeline…

Fast forward, very slowly and painfully, twenty-four months later and we are getting ready to walk into the surgical appointment to have the device removed, ex-planted as the medical world calls it… The doctor, whom I have never met if that tells you how desperate I was to get this device removed, says it will take two and a half hours of time as this is pretty standard for what they do…

So, over three hours after the doctor anticipated being done my husband was being updated as to why I was still in surgery. It seems I was essentially hog-tied by the wires the implanting doctor implanted. See, after tunneling through my lower back muscles to implant the battery on the opposite side of where he anchored the wires into my spinal cord. Then the specialist, Kansas’ finest as was explained to me, ran said wires up along my spinal column, as in setting right up next to it. Then preceded to loop the wires up over my vertebra in between my skin and the bone, then back down underneath the spinal cord, and finally anchored it underneath.

Hmm, ya say it was implanted improperly? You’re saying it’s no wonder she hurt? Hmm, ya don’t say… Well, all sarcasm aside… I still feel the battery area almost as if it were still there. Again, the intense pain is gone but that sharp, aching deep in the socket is still there. My lower back hurts when I sleep, allow me to rephrase that when I try to sleep. Generally, I awake to the sound of me wincing in pain when I try to roll over in my sleep. Trying to sleep longer than a few hours at a time is near impossible and here I stupidly thought, they are trying to help me.

I thought what could hurt trying, worse case it doesn’t help as much as I thought it would and I just don’t use it. Wrong! Not the worse case scenario with an scs.

DID YOU KNOW THAT…

November was declared across the United States of America as “National Complex Region Pain Syndrome” month in 2015? Did you know there was an official awareness ribbon and it isn’t orange and that in fact, the use of the orange ribbon is an infringement of the copyright protected by an animal rights organization called Animal Guardians”?

8606795
Official CRPS Awareness Ribbon.

The CRPS community has it’s own copyright-protected National Awareness Ribbon through RSDHope.org which is shown to the left, a multi-colored flame ribbon representing the burning pain of CRPS! Rather than utilizing any one single color, especially one already in use and/or copyright protected by another cause, the CRPS/RSD Community decided fifteen+ years ago that the flame-colored ribbon better represented our disease than any single-color ribbon ever could.

Thus the Multi-colored Flame ribbon displayed to your left,  symbolizes the intense burning pain most patients experience every day of their CRPS-life. To unite the entire CRPS Community under one banner, one flag, one ribbon across the entire United States, including the internet, and around the globe!

As such, I am giving my ribbon of choice a makeover… So far I like this ribbon best.

Suicide-Prevention-Ribbon_011

How do I detox? I recharge my battery.

Firstly, let me say detoxing my body, spirit, and mind started with my diet and chemical exposure. From there I started shutting out toxic people from my daily interactions because they are battery drainers rather than chargers. Interestingly enough it is the negative that gives the charge to the battery to make it positive, therefore when you are negative you are giving away your energy. Therein giving credence to the fact that negative people heal slower than those who carry a positive attitude because they have given away all the power they possess to heal with.

From time to time not all negative individuals can be removed from the equation. As such the next step plays into how you contend with those you cannot contend with and that is boundaries. You have to set boundaries with not only those around you but more importantly with yourself. Without them, you will run out of spoons before you know it. {Research “pain spoon theory”.]

Optimized-park-972173_640

Understand, the levels with which you allow others to expect of you is that by which you will not live up to said expectations. As you are the master of your existence and you must take the reins or someone else will. When you allow others to dictate to your path of recovery, your idea of relaxation, you-you will find misery, pain, and dysfunction simply because you will be dwelling upon that with which you have given away, your level of control.

So what do I do? *I continue to eat my (as much as possible) free-range, grass-fed, no antibiotics meats, non-GMO, organic, low-carb, low to no lectins dietary protocol with minimal dairy added probiotics and prebiotics from homebrewed kombucha. I use unfiltered honey, raw sugar, clarified butter, avocado oil, non-iodized sea salt, Himalayan pink salt, garlic… I make bone-broth at home from the leftover chicken or beef bones…

This means little to no nitrates, preservatives, or processed ingredients. No unsaturated fats, no fake sugars, no substitute anything it is full fat all the way. If it is premix or premade I figure out how to make it from scratch. [Example: Green Bean Casserole doesn’t involve opening any cans of cream of mushroom soup] AND NO PORK! It is considered a neurotoxin. There are alternatives to bacon beside the standard fakon, I mean turkey bacon, we find readily in the stores and that is beef bacon. I believe it is the best substitute there is and today prefer it to what I recall bacon did taste like.

Optimized-bacon-283096_640

[TIP: When pan frying or baking facon aka turkey bacon I use either clarified butter or coconut butter. Both are a saturated fat thus will penetrate the meat causing it to fry just like, almost, pork bacon.]

What else do I do? I take hot soaking Epson salts, baking soda, and borax baths upwards of three times a week. Nothing really changes when I detox other than I shut down. I own no one nothing. My time is my time to rest, answer to no one but me and if I am tired or hungry or cold or whatever. I then engage in my enjoyment tasks if I so choose to. Therapy only if I am up to it and not every down day is due to upped pain. Some are to prevent pain from rising.

Plus, I drink my bathwater now sorta, I make this adrenal cocktail of orange juice, salt, magnesium, potassium, and borax. Yes, borax, it is a natural salt and in a battery set up, it will vigorously attract the negative charge to the positive charge. I also spike my homemade tea with the very same magnesium, salt, and borax. If you haven’t research on how important borax is to the muscles and bones it will amaze you. Again, this isn’t a cure, not everyone will experience the same results as I have, your results could be better. We are constantly engaging in the S.A.D. way of life we were programmed into believing was not harmful.

Optimized-salt-1884166_1920

So, regardless as to if you are battling a chronic illness or not, I ask you what does it hurt to stop damaging the bioengineered body you possess, in fact, the only one you will ever possess and take as good of or better care of it than we do our cars we trade off. Keep in mind those dishes, they will wait as you slowly washing them through the day taking eight hours to wash one sink full and vacuuming can wait till tomorrow if you are not up to it today. Most important is to get your body functioning back as it should and that my friend will take time. It took time to break down, it will take time to heal. That said with time your energy levels should noticeably improve when you get the right mix of fuel for your body. There is no one-size-fits-all diet, there are guidelines to follow [*see above] but your diet will be specific to your body,

Optimized-medical-sister NOT
I am not a doctor, I do not claim to have ever been one and I certainly do not play one on TV.

I am simply here to share my journey with you and show you there are alternative to what we are offered via Western medicine alone that’s it, not instruct you on how your body will best respond that you have to figure out on your own. I am sharing with you the alternatives that have changed my life I am no one special, just an individual willing to share what I am discovering works for me, what I am trying and how I am failing because it is all apart of the intricacies of how we get our bodies to function optimally.

When Disaster Strikes

… or you have a mechanical failure, stuff happens. Picture this… I had literally just physically commented on a social media post I believe in any given situation “how you respond to a situation is 90% of the equation.”

Only to have a situation happen that could have literally left me standing knee deep in water making every word I said irrelevant. Giving every negative pessimist a foothold to say “bullshit Lisa things happen that are 90% of the problem…”

Really? Really? Then try this one on for size and explain to me how my reaction to this is only 10% of how it ultimately affects me, mind you this is the only day one. It is an ongoing issue, where the initial response and clean up isn’t the end of it.

Days consisting of trying to finding service providers who service our neck of the woods and issues exacerbated by the water that no longer is something we have the luxury of waiting to address is what we are contending with now. Not the zen lifestyle of healing energy we are always hearing and falling short of.

In all this I’ve really not missed a beat, I did take an elevated pain day. Though what you might take into consideration is there was a weather system pushing through at the same time and for the first time since moving here it drizzled a slow soaking rain and snow intermixed for three days.

If this had been an optional disaster happening, had we known hot water tanks can rust through this never would have happened now that we know it won’t ever happen again that all said if I could have picked when this happened… A few weeks back when it was warm enough to really evaporate the water would have been a better time frame to start this in my shocked homeowner opinion.

As it is, things are going fairly well, unlike the natural disaster going on I still have my home, I have a fireplace to keep warm and things could have been worse.

Chin up and push forward, today is a new day.

I can be found…

That day to day might not make it on the blog, however, some of it makes it on Instagram as @after.crps. If you aren’t already on Instagram install the app and follow my photos and videos. You can catch my cross-post from Instagram on my Facebook page @aftercrps as well.

Please leave me a comment, question or possibly a suggestion. I will get back to you as soon as I find it.

Good, Bad, & the Ugly

We all have good and bad days it’s the natural rhythm of life. Being positive in the middle of chronic illness is difficult, to say the least. People look to you as though you’re this pillar of strength, that no matter what you’re gonna face each coming obstacle with grace and fortitude…

Yeah, no. A person always falls short someplace. There is always going to be those certain days when no matter what your emotions are all over the place when interacting with people is best left to those who get you.

Today’s a very difficult day for me, verge of tears, argued with my husband because of a misunderstanding of words used indicated a plan change not discussed that hasn’t changed. I’m raw, today, tired, overwhelmed… all factors contributing to the elevated pain and discomfort of crps already happening with the weather changes. (Heavy Sigh)

Boils down to today sucks ass and I am alone because to discuss my anguish with my spouse will only upset him. So, put on my game face, bury my pain and push on. God, this eye has GOT to stop twitching!

%d bloggers like this: