CRPS My Journey: Chapter 23 - From Achilles Heel to Vitamin Supplements: Building strength!

Okay, so my break was a bit shorter than I anticipated, but that is the thing. As soon as I think this is going to be my last chapter, people contact me to tell me how much a certain chapter meant to them, and then asks me to continue as it gives a voice not only to myself, but also to them, as they are going through the same struggles as myself. Suddenly they do not feel alone. What they have struggled to express or get other people to understand - suddenly they found someone that knows and understands something about what they experience. I am so blessed to be able to use what is happening to me, to encourage others that are going through the same struggles, and to advocate CRPS to those who do not know and do not understand. Thank you to all my readers for supporting me in this way, and giving me the strength and the platform to be a voice for CRPS warriors.

Achilles heel

The metaphor Achilles heel often refer to "a weakness in spite of overall strength, which can lead to downfall". According to Greek mythology, Achilles was a demi-god who was instrumental in the Trojan war. Because of his enormous strength and invulnerability, he became the greatest warrior of his time. However, he had one weak point - his heel. The story goes that his mother held him by his heel when he was still an infant and dipped him in the river Styx, so that he would become immortal. And as the story goes he became indestructible...except for his heel, that would eventually become his downfall, as this was the only part of his body that was not wetted by the water. During the Trojan war he was struck by an arrow (possibly a poisoned arrow) from the Trojan Prince Paris in his heel, and he was killed. The only vulnerable spot in his body, became his greatest downfall.

The story or legend of Achilles made me think about life, and how we approach life itself. In 2 Corinthians 12:7 Paul talks about a "thorn in his flesh", his Achilles heel if you will. Although Biblical scholars vary in their interpretation of what exactly this "thorn" was, it is not so much the thorn that I want to focus on, as it is the fact that he had a weakness or challenge that made him look at life from a different point of view. Paul acknowledged his weakness or challenge, but did not let it define him or prevent him from living life to the fullest. He used his "thorn" to motivate and challenge him to be better, to live life to the fullest. In the same way Achilles acknowledged his weakness, but again did not let his weakness define or stop him from becoming the greatest warrior, even though he knew that it may be his ultimate downfall.

In the last month I have lost a number of people in my life, within days of each other. Two of these people that I have lost were friends. They were those people that always saw the glass as overflowing, even though it was only half full, or at times even empty. It seemed that nothing could faze them or get them down. Ironically both of these friends died due to complications of blood clots that they had. It came suddenly, they got treatment, got better and then suddenly without warning were taken from this life. Looking at them and the impact that they made in the lives of the people around them, made me realise that we all have our Achilles heel, that vulnerability that have the potential to be fatal - but how we live in spite of that vulnerability and how we approach life and look at life in spite of that vulnerability, is what makes the difference. 

Achilles heel...we all have them. We can either acknowledge and embrace it and let it motivate us to greatness, or we can give in to it, and let it destroy us along with everything and everyone that we love and live for. CRPS is my Achilles heel, for others it may be heart problems, or blood clots, cancer or auto immune disease. The thorn or Achilles heel should not be the focus point...how we react to it and how we use it to motivate us to live life to the fullest is what really matter. 

This one friend of mine, had a heart attack a couple of weeks ago when a blood clot shot through his heart. The doctors told him he was lucky. I spoke to him a week after, and he was full of life and motivation. He spoke as if he was the healthiest person in the world. If I did not know that he was in hospital, I would not even have guessed it. He had the biggest heart. He had this presence around him when he entered the room. We still made plans for a chat over coffee. He was so sure that he would be back at work the next Monday and planned on showing me some new tools and machines that he bought and wanted to talk about my blog, go to the golf range etc. A week later, he passed away unexpectedly in hospital after suffering a massive heart attack. How ironic. His big heart, became his Achilles heel...and even then he did not let it steal life from him. Out of his hospital bed, he was still helping and caring for others. He has achieved greatness in spite of his Achilles heel. Roelof we salute you!

I often said this, CRPS does not define me. It may be my Achilles heel, but in order for me to be able to move forward, I had to embrace it. That does not mean that I am oblivious to the horrific outcomes of this disease, nor does it mean that I am ignorant of the fact that I have a disability. A while ago I was experiencing some remission. The last couple of weeks though, have been hell. We are mid in our winter season. The snow on the mountaintops causes the weather to drop to 2 and 3 degrees Celsius where we are. Buddy and cold weather do not mix. I think this winter has had a far greater effect on my hand, than last year's winter. Especially with the pain that is going beyond my wrist. It is really tiring. To top it off I am struggling a bit with a head cold. So every time I sneeze or cough, it feels like a painful electricity jolt shooting from my neck down the arm and into my hand, causing excruciating pain an numbness in my hand. So it is either one of my discs that's not a happy chap...or I am turning into the Flash with electricity shooting through my veins. Pain is exhausting. However, I will not allow it to consume me. 

Even though I faced many challenges after being diagnosed, I still did not trust my hand enough for other specific challenges. More than that, I used to use my hand (and CRPS) as an excuse not to take certain risks in certain areas of my life. I was reminded a while ago of Peter that had to take the leap of faith and get out of the boat so that he could walk on water (Matthew 14:22-33). While the wind was blowing around him and the waves were crashing against the boat, he was able to walk on the water as long as he kept his eyes on Jesus - that was all he had to do. The moment that he took his eyes off Jesus and faced them towards his surroundings and problems that threatened his faith, he started to sink. 

In much the same way, my hand has been like these waves crashing against the boat. I wouldn't take this risk, because my eyes were on my hand. Buddy became an excuse not to take certain risks for fear that Chucky may resurface and prevent me from taking on these new challenges (even though I have taken much more and much bigger risks in the last two years). [For those that knows the DC comics, it is much like killer Frost in the Flash Series - you can tell what we as a family is watching at the moment] So an opportunity came along where I had the chance to take said risk...and I did it. Yes I was hesitant. Yes my faith was shaken as I looked at the waves. But I went ahead and did it any way. Took my eyes off  my surroundings and focused it on the goal before me. And although the outcome did not go in my favour, I am glad that I took the risk. I am certainly at a much greater space in my life, where I will certainly take more of these types of risks in the future. And who know what my future might hold. Perhaps it may be the beginning of a new chapter in my life.

After many years of painful TB, where he eventually lost his leg to the disease, the Poet William Ernest Henley (1849-1903) wrote the well known saying: 'I am the master of my fate: I am the captain of my soul.' He came to understand that the way that he saw life and prepared himself to face its realities, determined his future - not his disability, regardless of how painful and debilitating it was. He understood that you do not shy away from the waves crashing against the boat, but that you face them head on, and use them as a motivator in your life to reach the goals that you have set for yourself.

Although some are lucky enough, not everyone has the opportunity to say their good byes before they die. Live so that others may remember you, not only when you are gone, but now - in the here and now - as a living legend! Any person who can stand up to fight another day, despite the pain and exhaustion, and show the world that their lives still have great value, that they still matter, and that they make the world a better place because they are in it, is a true legend.

Reinventing myself!

I have tried over the last year to change a lot of things to make it easier on my hand, without taking away the challenges or the abilities. For example, I have started to invest in lighter tools. I have found that with certain tools, for example a hammer or a drill, it has become more and more painful to use these tools, especially over an extended time, as they have become too heavy for my hand to manage. Often it is not only the weight or size of the tool, but also (in the case of power tools), the power and vibration of the tools. For example, the Jigsaw. Apart from the speed setting on the orbital jigsaw, the unit powers the blade to move, not only up and down, but in an elliptical cycle. This means it moves the blade slightly forward on the upstroke and slightly backward on the down stroke. All of this causes greater strain on your hand as you need to have a stronger grip and concentration, than a handsaw for instance. You also have to account for possible kickback, which can cause stress or trauma on your hand. Combine that with a hand that has its own personality and you have a recipe for disaster.

The same with the drills. I have found a lighter and smaller cordless drill than the one I always had, that is much easier on my hand, and which in actual fact has got more power than the older drill. Naturally there are certain tools like a grinder for example, that you unfortunately cannot really get an alternative to, due to the grinding force that it creates, but fortunately these tools aren't used that often. In certain cases, I am able to use my Dremel tool for certain tasks that I otherwise might have needed to use these tools. 

I also had to rethink the use of hand tools. So instead of using the hammer that I always used, I have found different hammers for different applications, with much less weight, that can do the same work (if not better) than the older tools. Smaller, more lightweight tools, enable me to do more. It still put strain on my hand, and it still challenges my hand, causing my hand to become tired, sore, burning with painful days afterwards, but it enables me to do things that I otherwise would not have been able to. 

All these tools allow me to do what I used to do before my operation, and more, while creating less stress on my hand (not NO stress, but LESS stress). Yes, perhaps it takes me longer to finish a project, but I am doing it.

But I also had to rethink and reinvent the way I used to do things. So for example I started to build myself a proper but simple workbench, with a bench vice, which allowed me to be able to start doing projects again. The next evolutionary event in reinventing the way I do things, was to build myself a proper table saw - as I never had one, and always had to work with the jig saw or the circular saw and a made shift table. But I did not want to just have a table saw, I wanted it to be multifunctional. So I looked for a design where you can fit different tools to it. So for example, the same table saw can be converted into a band saw, or a router table, or to convert a planer into a jointer and so forth. This is still a work in progress and I am using mostly recycled wood, so it may not look perfect, but I need it to do the job well, in a way that I can utilise it, rather than winning a pageant contest. I had to find ways to do projects in a way that I can protect my hand, while challenging him. This also meant learning to work with gloves, the right gloves - gloves that are strong enough to handle slipping blades - not only to protect Buddy, but also to protect my left hand against Buddy. This was quite an adjustment, but I have found a pair of gloves that does not leave a mark when you take a sharp utility knife to it. It does take away a bit of the feeling and sensitivity that you would have when working bare hands, but that is a price I am willing to pay if it means that I am protecting my hands.

I think the most frustrating about all of this, is the amount of time that it takes to make these changes and built these aids, as 1. it took strain on my hand while doing so, and 2. it took time away that I would have wanted to spend on doing other projects. However, looking at the way forward and my abilities to be able to do those other projects, it is not a waste of time. It is investing in my hand's readjustment. I use the word readjustment, as we know that there is no cure for CRPS, which means that using the word recovery is not really truthful to CRPS and can be somewhat misleading. I don't think there is quite a word that can really describe this, but I feel Readjustment do get somewhat closer, as (in order to experience remission) I need to adjust the way I use my hand, how I use my hand and how and where I challenge it. 

This has become a focus point for me over the last couple of months, as I have started experiencing that the CRPS might be spreading. Small things that I have noticed over the last couple of months, that have become full blown signs in the last couple of weeks since we are in winter. For instance, my wrist up to the middle of my forearm is extremely sensitive to touch. Even my medical aid band or my sleeve of my jacket, makes it feel like all skin is torn off and hot coals are thrown on the bare flesh. as I am typing here, my hand, wrist and forearm is in excruciating pain.

At last I have tried the hand warmer (Little Hotties hand warmers), and although the heat helped, I could not stand the sensory irritation that it created. These hand warmers keep warm for 10 hours, after which they are thrown away, but the bag that it is in, and especially the corners irritated the sensation part of my hand so much, that I had to take them out after a while. I have tried them inside my compression glove on top of my hand, but the heat did not go through to the inside of my hand. Then I tried them on my hand palm inside the compression glove, and it felt like sharp razor blades or thin fishing line cutting through flesh and bone. Perhaps a USB heated glove may help, but I am still contemplating whether spending that amount of money on a glove - that may or may not help - just to test it, is worth it. If it works, great. But if it does not work, then I have spent money that could have gone towards medication for example. So it is a catch 22, but let’s see what lies ahead. For now, I still need to find a supplier in South Africa that do supply those gloves, as most of the ones that I have seen is overseas. And then again, it need to be a comfortable material that will not irritate the CRPS.

What about the Rhisotomy? Does not seem to have worked...again. Neck pain is still as bad as ever, arms are getting numb, and whether it had any effect on rewiring my brain...well only time will tell. For now, it does not seem that way. But I still have the coping skills that I have built up over the past two years to get me through every day. 

 

We recently took our kids ice skating. Buddy really did not like the cold. I tried to teach both Liam and Malan to skate. Malan eventually came right, but I think Liam enjoyed the falling on the ice much more than trying to skate. Somehow he mastered going backwards and going in circles, but he just could not learn to skate forward - too wild and hasty. But we had great fun. That night I did not have much sleep, as both Buddy and my neck flared up really bad - but it was "worth" it. There was a point however that both my hands were on fire. I do not necessarily think that my CRPS has spread to my left hand. Perhaps my left hand had a form of "Couvade syndrome" - just instead of mimicking labour pains, he was mimicking the burning in my right hand. But for now I am not too concerned about that. (we took them ice skating a second time, and this time Liam actually learned to skate)  

Meanwhile, I have started to take on my medical aid. I have gathered reports from most of my medical team (therapists included), as well as all my test results, which I forwarded to them, stating my case, in the hopes that they might cover my medicine, or at least part of it, under the chronic benefit. Most of my medical team is on board with this and willing to help. Might be a long shot, but I am prepared to take it as far as I need to. If I succeed, this may be a win for all CRPS warriors that find themselves in the same situation as myself. I will keep you updated.

CRPS and vitamin Supplements

The question was asked recently on one of the groups whether vitamin supplements have any influence or effect on either preventing and/or rehabilitating CRPS. 

On 2 July 2021 an article was published online in The National Library of Medicine with the following outcome:

"A total of 2026 patients of whom 632 males and 1394 female were collected in our systematic review. During the entire follow-up period, the occurrence of CRPS-I was evaluated in 1939 patients. Five of the six analysed studies were favouring prophylactic use of the 500-1000 mg daily dose of VC for 45-50 days after orthopaedic or trauma care for prevention of CRPS-I. Only one study found no benefit in VC supplementation compared with placebo to prevent CRPS-I. Analysis of the literature suggests that a daily 500-1000 mg VC supplementation may reduce the onset of CRPS-I in trauma of upper/lower extremities and in orthopaedic surgery."

This was only one study, and the result was that Vit C in high dosages might help to prevent CRPS-I after surgery...in some cases.

There is a website called https://complextruths.org/ which is aimed at CRPS warriors and helping them to live a better quality of life. I do not think that the aim of this website is to promote any "cure" for CRPS, but what they are doing is to look at alternative and natural ways to bring relief to CRPS warriors, without taking away from medicine and coping skills. One of the things that they look at is "Dietary Supplements for CRPS"

It is an interesting read, so I will rather post the whole article here as is, than try and summarize it.

Dietary Supplements for CRPS

Treating Complex Regional Pain Syndrome with Dietary Supplements

Dietary Supplements should be added to every CRPS warriors armory against this disease. From fish oil, which is known to help against allodynia and hyperalgesia, to ginkgo biloba to help fight brain fog, and Vitamin D, which is depleted faster than normal thanks to the CRPS, your body needs vitamins more than ever now. Here is a list straight from our Board of Director's mouths to your eyes, and hopefully, to your belly's, to feed your systems. Whenever possible, try to buy Gluten Free, organic, and naturally sourced.

Many of the procedures we have listed here are FDA approved or are in pre-approval stated, but many are not, and are in circulation around the United States and around the world. We will note whether they are FDA approved (to the best of our knowledge) on the page, but if you know different please, share the truth with us in the comments and we will do our best to follow up. All treatments listed are treatments that are in an active state and are currently in production and being purchased by people with the disease. Our intent of sharing this information with you is to educate, inform and publicize what treatments are available to you so that you can make the best decision for you. If we have personal knowledge, or if our doctors have an opinion, we will notate that in the post, but otherwise, we try to stay unbiased and let the community speak for themselves.

Alpha Lipoic Acid

Several studies have found that Alpha Lipoic Acid (ALA) can help with neuropathy -- nerve damage --related to CRPS, reducing symptoms like pain, tingling, and prickling in the feet and legs. It plays an important role in improved nerve function, reduced inflammation, lower blood sugar levels, weight-loss, diabetes, slowed skin aging and other health conditions.

CBD (Cannabidiol) Oil

Are you looking for a safe, natural and effective way to relieve your chronic pain but don't want the "high" associated with Marijuana known as THC? CBD is rearing its head as the new non-drug (and legal) of choice in a town that has a lot to offer without the risk.

Cinnamon

Many people who suffer from the chronic, intractable pain of CRPS which causes joint and tissue inflammation, are turning to natural supplements to help control their pain. Cinnamon is just what the doctor ordered and Cinnamon is a natural spice which can easily be added to many of your favorite recipes or taken in gel capsules to get your daily serving.

Fish Oil Omega-3 Fatty Acids

Studies have shown that fish oil can slow the progression of neuropathy and help certain symptoms of CRPS such as allodynia and hyperalgesia. These studies show that anti-inflammatory properties are useful in reducing pain and discomfort. Its neuro-protective effects can help to stimulate neuron out growth.

Ginko Biloba Herb

Gingko Biloba is a top-selling supplement due to its long-list of cognitive benefits and well-known abilities to help fight mental fatigue & brain fog, increase cognitive function, improve memory, and increase mental agility to easily perform everyday tasks.

Green Tea Supplements

Green Tea is one of the most powerful antioxidant on the planet and is capable of stopping the unstable molecules called free radicals from damaging your cells. The positive effects on that it has on the brain and heart is just what the doctor ordered for your nervous system and circulation - the main systems impacted by CRPS.

L'Arginine Supplements for Circulation

L-Arginine is primarily used to increase circulation and blood flow for enhanced vascular function; including areas of the body like the heart, head, and eyes. Some believers that suffer from CRPS say that the longer they take it, and with CONSISTENT use, it can even take the edge off the burning nerve pain and it can actually help warm up ice cold skin temperature because of the increased blood flow.

Magnesium

Do you suffer from brain fog, muscle cramps, migraines, and nerve pain from chronic pain brought on by Complex Regional Pain Syndrome? That could be because CRPS causes nutritional depletion of many nutrients, minerals and vitamins due to the myriad of drugs to help us fight the symptoms of CRPS.

Vitamin C

High Doses of Vitamin-C after an injury have been shown to decrease onset on CRPS in some studies, which have shown that Vitamin-C can be used as a preventative, if used in high doses of 500mg, for no longer than 50 days, following an injury such as a wrist fracture.

Please note, that none of these types of food is a magic cure for CRPS, but I do think that, seeing that the body is more than just flesh and blood - as CRPS so clearly proves over and over again - it is something that every warrior, not only CRPS warriors, can look into as a way to prolong life and hopefully decrease pain to some extent. Again it is not a magic cure, and there may not be one of these food groups or vitamins that bring any relief to you, or perhaps it inflames other medical issues...or perhaps it may just be the thing that you have needed all along to enable you to live a better, easier life with CRPS. I know in my case, Cannabis (CBD) is not an option as it increases my pain, but for others it may be helpful.

When I think of my dad, I remember how he always taught us as children that a lot of medicine has its origin, or its roots (pardon the pun), in plants or in nature. Things like Aloe Vera has long been used in its original form, before being "branded" in the form of pills, creams, drinks and so forth. Things like Cannabis, sour fig, African Wormwood, Buchu, Rooibos and many more were used through the ages in various forms for their natural anti septic, anti-inflammatory and medicinal properties. I remember how our house used to smell of buchu vinegar (used for sprains), or African wormwood or buchu (boiled as a tea), fresh rooibos tea (made from freshly dried stems). 

The same with vitamins. We did not have all these vitamin supplements of today. Perhaps they were on the shelves in the eighties, but it was very limited, and not really affordable for the average Joe. Between us and the neighbours, we had guava trees, pear trees, vineyards, loquats, strawberries, gooseberries, mulberries, quinces, figs and more. That is where our vitamins came from, directly from the earth. We grew our own corn, green beans, carrots, potatoes, tomatoes, broccoli, cauliflower and more. Again, that is where our vitamins and dietary supplements came from. Fizzy drinks were a luxury. We drank freshly squeezed juice or we got fresh juice delivered by the milk man (or Milky as we used to call them). That was where our vitamins came from.

Perhaps it was a much simpler time, without the fast foods, preservatives and packed schedules of today. Having a telephone on the wire and not cell phones and laptops made that we were less stressed. If you missed a call, that was it - you missed it, and probably did not even know it. People talked to each other, instead of sending emoji’s. Your actual face was the emoji. Families had dinner together, without the tv. In a sense, the world made more sense back then. Yes, a great deal of the diseases that we have today was misdiagnosed because of a lack of knowledge, but I do think that we lived healthier lives, that helped us to manage a lot of these things much better. Many of us probably lived with these diseases without knowing it. And because some of these diseases was not known, treatments were not readily available, as modern technology to diagnose these diseases and develop these treatments were still experimental and in development stages. But then there were also those diseases that doctors already knew about, like CRPS, that are so complex, that proper treatments are still being developed and re-evaluated and tested. This is not always a quick and easy progression.

At the end of the day, treating CRPS is not as simple as popping a pill. Treatment involves a holistic approach. I had extreme pain earlier the week, and somebody asked me why don't I take something for the pain. I answered her, "Pain medication don't work. It is like a foreign substance that enters my body, and my brain shouting to my body - that's probably for you - and my body answers - I don't touch that stuff, it must be yours".  

Yes, I do use medication, but for a different purpose. But the medication alone is not enough. All of these coping skills, mirror therapy, re-inventing myself, taking in vitamins etc. is needed to treat something so complex, that it becomes somewhat more bearable for me and enables me to push my limits. Lets face it, we all need a little bit more sun and natural vitamins. In the next chapter we will be looking at spoon therapy. Take care.

  

CRPS My Journey: Chapter 21 - Taming my demons!

Taming my Demons

In the previous chapter I spoke about going off Cymgen. As strange and ironic as it may seem, I think I am at a point now, being off Cymgen, where I am actually starting to miss some of the "lack of emotions and disassociation" - in certain aspects of my life in any way. Do not get me wrong. It feels great to be able to laugh again, although there are still times when it takes a bit of effort to do so. Being able to start connecting with my family again is also amazing. What I do miss though, is being able to feel indifferent whenever I experience a crappy day, whether it is physical or emotional. It feels crap to feel irritated and frustrated, to feel emotional hurt and to just feel emotional about stuff - especially if you have not felt that and dealt with it for the last year and a half. I know it is part of being human and part of life, but I don't know what scares me most...feeling this way about and coping with these emotions, or not trusting myself to become too excited when I feel joy and laughter (not fake or forced laughter, but real, out-of-your-belly laughter). Starting to feel emotions of joy and laughter feels like new unfamiliar territory to me.

There are definitely times when I just want to go back to that disassociated feeling of "it is what it is...facts are facts and emotions...well bleh". I realise that I have gained a feeling of being content and sheltered in my state of not being able to show or feel emotions. It has become a sort of a safe haven, where I could say what I want, and do what I want, and think what I want, and deal with whatever comes my way without having to worry about consequences or feelings, as it did not affect me emotionally. Things like re-evaluating my life, or my life choices, thinking about my career, where I am headed and if I am still where I need to be, has in a sense been both easier, but also more difficult when I was on Cymgen. It was easier in the sense that I could make decisions and evaluate things more clearly without acting from an emotional state, or become emotional about it. On the other hand, it became more difficult in the sense that I did not have the emotional connection to push me to the point of making life altering changes in certain areas of my life.

Intellectual Intelligence vs Emotional Intelligence

So there is definitely something to be said for having both intellect and emotions - as with everything else in life, they balance each other out. Often I experienced that I did not have the courage to make certain life altering decisions, for example putting myself out there for new job opportunities, or furthering my studies, maybe even starting my own business, as I always felt that my hand was holding me back. I was able to intellectually calculate the risk and work out the pros and cons, but was not able to bring myself to get past Buddy, in order to pursue other opportunities. When I thought about Buddy, it was mostly intellectual and calculated (in comparison to when I was diagnosed and in emotional turmoil), which created only more of a lack of trust in my own abilities, despite having achieved what I have over the last 2 years in both my work, as well as the projects that I took on at home. Getting my emotions back is suddenly like pouring fuel on a flame and seeing how it wants to run wild and out of control. So the battle now is to get that balance back, having made the intellectual assessment, I now need the emotional drive force.

Both Intellectual Intelligence and Emotional Intelligence are needed to determine success in life. Psychologists like Daniel Coleman, Robert J. Sternberg and others explains this as follow: "Emotional skills are a better predictor of success in life than intelligence. Though emotions might not be as helpful when doing math problems, they are the compass we use to navigate life. Our emotions set the direction, our intelligence figures out how to get there. When it comes to understanding who we are, what we stand for, and what we want from life, our emotions are what drives us."

In certain instances, my lack of emotions actually helped me to be better at certain stuff, especially in the workplace, while in other instances it created a rift or wall between myself and those that I care about. And although I struggled with not feeling emotions, especially towards the end of my Cymgen treatment, it did help me to become a stronger person. I think that I needed to have that experience in order to build certain character traits and coping mechanisms, in a very fast and short time, which I otherwise might not have been able to do at all. So, you might say that I needed to be able to concentrate on my Intellectual Intelligence, as the sensitivity of my Emotional Intelligence was heightened beyond control.

CRPS is not something easy to deal with, and as I have said before, I was at a point where I had to choose the lesser of two evils. And for a year and a half, it was being on Cymgen rather than dealing with excruciating pain every moment of every single day. This time around, it is finding my way back to my loved ones, even though the pain has doubled or become a bit more consistent again. BUT if I did not go through what I had gone through on the Cymgen, I would not have been able to deal with the extra pain and exhaustion and burning that I am currently experiencing. So in no way do I have any regrets for being on Cymgen. In actual fact, due to what I said in the beginning of this chapter, I need to prevent myself from going back on it again (as I do still have a full month's stock). Yes, I know I had my demons while being on Cymgen, mostly caused by Cymgen, but sometimes I just miss some of those demons...just a little bit. But I think the possibility of having to deal with the initial nausea again, do discourage me somewhat of using what is left of my Cymgen.

Correlation between CRPS, Meds and Weight Gain

So when I started on Cymgen, I weighed in at 114kg (about 251 pounds) and at the time I was actually slowly starting to lose weight, as I wanted to bring my weight down. That was one of my goals, I wanted to come down to at least 100kg (220pounds) so that I could live healthier, feel better about my weight and just be able to manage the hand and neck and everything else much better. The main reason that I was at the doctor that day was so that I could be placed on Cymgen for the pain management. So after almost an hour, as I was leaving the doctor's office, she turned back and said, "Oh by the way, you might gain some weight on this medicine". Ah great...just what I needed to hear. Flip, so as if having a hand that thinks he is his own person and being cut off from the rest of my body was not bad enough, I now had the possibility of gaining more weight, while I am actually trying to lose weight. Why could my weight not feel cut off from my body? Then I would weigh less. Or even Buddy - Chucky at the time? Look I am just saying. He did not want to be part of my body and he made sure that I knew that, so why should I carry his weight with me? Couldn't the fact that he felt disconnected from me, show in me weighing less?

For the first month I actually started losing weight. I remember weighing myself one morning and thought, "Hah, nailed it, take that CRPS and Cymgen...I lost 4kg (almost 9 pounds) and the doctor said I'm going to gain weight". And I started to feel good about myself. Yes, I am losing weight, this is awesome! I am not in the statistics of gaining weight on these meds, Booyay! Take that! (But then again, I was nauseous for the first 4 weeks - 24/7 - which may explain the weight loss)

Yep, I should not have said that. It was as if the meds and the CRPS ganged up on me. "You thought you going to lose weight? Not on our watch bro. We gonna show you. We gonna give it to you!" And they did. They got in there boots and all. No compassion, no remorse...full-on, no-compromised weight gain. I did not eat more than usual; in fact, I ate less at times. I actually started to eat less takeaways and chocolates and stuff, but still my weight climbed...and I became less active due to the pain.

A year and a half later, and I get weighed in for my Rhizotomy (sounds like I was weighing in for a boxing match ha-ha). I look at the nurse and I say, "Nope, that scale is wrong. Let’s weigh again.", So he weighs me again. "Nope, that scale cannot be right, but let’s go with it for now". So I get home later that day and I get on my own scale. What the hell! Freaking 127kg (280 pounds). Are you freaking kidding me? I can't say, "No let’s do it again". This is my own scale, and it confirms what the scale at the hospital told me...TWICE! I lost 4kg (9 pounds), so that I could gain 17kg (37 pounds). Never in my life have I weighed this much.

By now, we know that weight gain can be a side effect of CRPS, as well as Cymgen (Cymbalta/Duloxetine). Thus a double whammy. There are CRPS warriors that actually lose weight from CRPS. I am not one of them.... NOPE. Not even close. Studies have been done on the relation between CRPS and weight gain and one of the outcomes of such a study is what they call "Weight gain - unintentional". This refers to weight that is gained, without you actually trying to gain weight, not necessarily by the disease or syndrome itself, but due to the treatments and medication that you're on, although it can also be due to how the neurotransmitters in the brain is affected. One such study states that Unintentional weight gain was found to be associated with 3,911 drugs and 3,915 conditions. But before we all get excited and start saying, "See I told you it is not my fault, I have a condition", let's not forget that our lifestyle and what we consume and our lack of exercise also plays a major role. Unfortunately for some conditions, like CRPS, the pain is so bad that exercise is nearly impossible. That is a fact. When you suffer from chronic pain you are already tired, and you are not in the mood for physical exercise. And with our rushed life styles nowadays, if you do not get exercise, your body struggle to get rid of excess fat that you take in, or that your body produces by the sugars and stuff that you take in. So unintentional weight gain can also happen due to an increase of food and/or drink intake, without exercising.

I must admit that due to the pain, I fall in that category that find it hard to start exercising. Don't get me wrong, I miss hiking, kloofing, caving, climbing etc. - I just struggle to motivate myself through the pain, knowing that I am even gonna have more pain afterwards. On the other hand, apart from losing or managing my weight, I need to exercise in order to activate my internal drug cabinet, so that my body can manage the pain better. It leaves you in one hell of a catch 22. When I got on that scale for the 3rd time, I just felt "Damn, I miss not having any emotions right now. Why must I start getting some emotions back at the same time that a piece of technology is telling me I am fat and overweight. It’s not fair. It is a conspiracy - don't know between whom, but it must be."

127kg (280pounds). If you type into google: "How heavy is 127kg?", these are what comes up:

It's about nine-tenths as heavy as a Panda Bear. The weight of a Panda Bear is about 150 kilograms

I am freaking Kung Fu Panda...without the kung fu!!! And it gets worse:

It's about one-and-a-half times as heavy as a Kangaroo. The weight of a Kangaroo is about 85 kilograms.

It's about half as heavy as a Pig. The weight of a Pig is about 250 kilograms.

It's about two-and-a-half times as heavy as an Octopus. The weight of an Octopus is about 50 kilograms.

It's about three-tenths as heavy as a Horse. The weight of a Horse is about 420 kilograms.

It's about one-and-three-fourths times as heavy as a Beer Keg. The weight of a Beer Keg is about 72.80 kilograms.

See the last one? I don't really drink beer, so I cannot even say that this is the cause. And why do they explain it at the hand of animals and beer? I know food and alcohol attribute to weight gain, but really?

But all jokes aside, it is concerning that there is a correlation between CRPS and weight gain (or weight loss in some cases), and that it is aided by the actual drugs that are used to treat it. It does mean that if I don't want to be Kung Fu Panda, I need to fight (no pun intended) twice as hard to motivate myself to push my pain barriers, so that I can start exercising - especially when I am feeling weak and sore and exhausted. And as with a number of warriors that I have spoken to over the past year, many of them do not only have CRPS. Many of them have other conditions as well, like myself with my neck. So that automatically makes you over cautious of doing something that may potentially hurt you or worsen your condition(s). I think there is a fine balance between being cautious and pushing your limits, and being totally reckless.

As I have shared my own experiences the past year, I have always tried to establish that one should be responsible in whatever you do to manage CRPS.

1. I need to understand my limitations, and also know that my limits or "barriers" will never be the same as it was before I developed CRPS or the neck issues. If I do not understand that, and understand what my new limitations are, I am not going to be able to push my limits in a responsible manner. That is where it becomes reckless.

2. I need to understand that everything that I am going to do is going to have some consequence. It can be positive in the sense that there is a reduction in the pain or even remission, or it can have no effect at all, or it can be negative and push my sensitivity and pain levels in overdrive. So as I learn more about myself and the condition, I become more aware of what to expect and when to expect it. For example, if I am going to use my hand to do paving work, I know that I am going to have a few days of hell afterwards with major flare-ups.

3. I need to make a mind shift. I need to decide what I am going to do, or what I am prepared to do, and how far and at what pace I am going to do it, and commit to my decision. Set my goals. Realistically, I am not going to try and run a marathon, nor can I expect to do so in two weeks’ time. Realistically I can start by walking 2 km per day at a pace that I can handle, pushing it as I progress. Not only picking up the pace, but perhaps even pushing the distance as that initial 2km become "easier". (I am still going to have some days that I might not be able to accomplish the 2km, but that is my goal for the start. and if I can do that five out of seven days, with two days perhaps only 500m or even rest days - then that is okay, as I need to be responsible, without simply throwing in the towel.

4. I need to work on (a.) motivating myself by setting some goals; and (b.) ask others to motivate me. Best motivation is to get a walking or exercise buddy that do this with you and cheer you on. You do not want a Major Pain character, but you want someone that will motivate you by using your pain, abilities and experience as a guideline, rather than trying to create a boot camp.

5. I need to JUST DO IT! Planning and goal setting and everything we have spoken about is crucial...but it has NO meaning if I do not get out of my comfort zone and take action. I can have all the knowledge and motivation and faith, but if I do not get out of the boat, I will never know if I will actually be able to walk on the water.

Losing weight, as a general rule for most people, is not easy. Even more so for somebody that is suffering from chronic pain or someone who is on medication that causes you to gain weight - or both. Take my wife for example. She has been living with SLE (lupus) for the past 22 years, and because of the type of pain and weakness that SLE creates, it has been a struggle for her to exercise or lose weight. So the struggle is real. But it might not be impossible. Interestingly enough I have found that my reason for trying to lose weight, let’s say 3 years ago, is vastly different than what my reason(s) is now. Three years ago it might have been to get a beach body or look better, perhaps feel better about myself. Now, it is to live healthier, to be able to handle my CRPS and neck issues better and just to take unnecessary strain off my healing process - and let's not forget, to do stuff with my kids. Re-evaluating my reason(s) for losing weight, suddenly makes it more accessible, bringing it closer into range, as it starts to fit into my goals that I have set for myself in coping with CRPS.

I know that there are many studies that have been done on the relation between weight gain and your blood group for example. I do not want to get into that, as that is not what this chapter is about. I know that studies were also done on the relation between weight gain and the Covid lockdown. Interestingly enough, the results are not that surprising as the factors that they found to be causing weight gain during lockdown was:

Lack of sleep, decreased physical activity, snacking after dinner, eating in response to stress, and eating because of the appearance and smell of food are behaviours linked to weight gain during self-quarantine.

For CRPS warriors, these are normal everyday life. Lack of sleep, decreased physical activity, eating disorders...and as studies have also shown over the years something like lack of sleep have a number of negative consequences on the body and your health in general. One of the things that studies on sleep deprivation show is weight gain, increased pain levels, increased stress levels, mood swings and increased irritability, depression to name but a few. All symptoms or issues that CRPS warriors struggle with, or rather have the possibility of struggling with. Sleep was one of the first things that was addressed right at the start of my treatments, as you will see in the earlier chapters. I couldn't sleep because of the pain, but I needed to sleep to be able to manage the pain. A "simple" thing. If you are tired due to a lack of sleep, you have less ability to fight or manage the pain, because you just are too tired and not in the mood to fight. What I have found is that when this happens, I am irritated as hell and do not want to deal with people. And yes, when I am that tired, I do get the munchies. I want to snack, either to keep myself awake, or because I feel hungry and it feels like nothing fills that hunger. Which again increases my risk of gaining weight. The point that I am trying to make, is that it becomes a vicious cycle. And NO-ONE can break that cycle other than you or me that is caught within that cycle.

DBT: Emotion Regulation

The next step I want talk about in DBT is Emotion Regulation. Last time I jumped from 1 to 4, and now I am working my way up, but bear with me. I do have a reason why I am doing it this way.

Definition - learning to make your emotions work for you. Learn how to recognize when an emotion is unproductive and change it into a more productive emotion.

Ahhh...now you understand why I am touching on this in this chapter and not on Distress tolerance, as this is the one thing that I am dealing with at the moment. As you have seen in the first part of this chapter, I am at a point where I have to start dealing with my emotions, like a baby that is learning to eat, going from milk, to soft food, to more solid food. I am at the point where, as said before, I am dealing with trying to cope with a number of emotions that I have not experienced for 2 years, which is mostly crap at the moment, but necessary. I do not want to feel some of those emotions...but I need to be able to feel them and work through them. (And people around me obviously feels much stronger about this than I do - I would rather deal with that demon that takes away that crappy feeling, but it is what it is - it need to be done).

Emotional Regulation therefor plays a big role in the current phase of where I find myself. Yes, it has played an enormous role in the beginning, trying to get a hold on dealing with CRPS, but now I am right back at that place, just in a different phase or scenario. Two years ago I had to start dealing with the anger and false sense of guilt, and all those bad emotions that was caused by this disease that has sprung on me, trying to cope with this immense pain. Cymgen helped to cut that part off so that I could focus on gaining and growing my coping skills. Now, although still having to deal with the pain, I have to deal with other more subtle and more painful emotions that I have not been used to for two years. Feelings of being pushed aside, fear, stress, heartache - all those things that I suppose makes you human.

I have learned to recognise the expected emotions and whether they are productive or unproductive, although I could not experience them at the time. So, it was easier to deal with the expected emotion, as I have not been able to feel it and act upon it emotionally. Now that I am starting to experience them again, I am learning to make them work for me, by changing the unproductive emotions - like feeling crap after a bad experience - into more productive emotions that can motivate me and become my drive force to change my situation or do something about it, rather than just sulking about it. Emotions like Anger, frustration, depression and anxiety are strong emotions that can mean the difference between fighting CRPS and just throwing in the towel. As Hesti said the other day, whereas other people that struggles with CRPS, like I do, may have arrived at a point where they filed for disability, I have been able to push my barriers and learn to live in a symbiotic relationship with my hand. The idea thus of Emotion Regulation is to learn how to manage your feelings, so that it decreases your vulnerability to any form of painful emotions caused by situations that are entirely out of your control. CRPS is out of my control. I did not ask for it, I did nothing to deserve it, yet I developed it. This caused me to become angry, anxious and frustrated. I had to learn to manage these emotions, but because my body's sensitivity was so heightened, I struggled with this. Cymgen, without anyone knowing that it would have this effect on me, and without it being the intended purpose, helped me to deal with this by taking away my emotions for the time that I needed to be able to get skills in place that would eventually help me to better understand my condition, and enable me to turn my unproductive emotions into productive emotions, once my emotions started returning. My body's sensitivity is still very high, and crappy emotions are still......well crap. But I am able to deal with this much better than what I were able to do two years ago.

In Chapter 9 we spoke about radical acceptance and throughout the chapters we touched on mindfulness, which all forms part of Emotion Regulation. So I am not going to go into more detail on this, but I will place a link in the next chapter where you can go to, to learn more about DBT and the various phases.

Closing off this chapter, my kids started watching a program on Netflix called "Magic for humans". I am adding a clip here from the 3rd season, the 1st episode. It is a very interesting experiment that this guy does, which gives one a bit of insight into CRPS and what happens in the brain when you have CRPS. This is the basis for treating CRPS, as you will see in Chapter 3 where I talk about Mirror Therapy. Hopefully this will give you somewhat of an insight in what happens when you have CRPS. Enjoy.

CRPS My Journey: Chapter 20 - The greater cost of living with CRPS!

Update on Rhizotomy

So let’s start off with my Rhizotomy. At last I went for the Rhizotomy. It was so amazing to find an anaesthesiologist, that not only knows about CRPS, but have a very good knowledge of it. She even referred me to the Red Cross Children's hospital that apparently has one of the best departments in dealing with CRPS - although they specialise in children. Nonetheless, I think it is a good starting point, even if it is just to sit down with them and talk to people that 1. know, and 2. where I might have the opportunity to team up with, in creating more awareness. She immediately noticed the medical aid band and glove, and asked me just to keep the glove on but to remove the medical aid band before the procedure, because of the metal (they put a tag around my arm to say don't touch, CRPS - but she made a promise that she kept all the way, and that is to make sure that nobody touches that arm). She even sat on my right side and did not allow any blood pressure and stuff to be done on that arm. As I drifted off, I remember that she calmly and softly, as to not irritate my hand, put her hand on Buddy as if reassuring him that he is going to be alright, while reassuring me all the way that I am doing good and she will take care of him.

So the procedure went as well as can be expected. Some nausea, hell of a headache (that lasted for a couple of days, and still comes and goes, as they obviously try to cut off the pain signals from the nerves to the brain while trying to restart the nerves around the disks) and a bit off balance with my one leg wanting to go to one side and the other to the other side. There is an old Afrikaans song that says, "My voete loop na Wellington, maar ek gaan Worcester toe". Roughly translated, "My feet are going to Wellington, But I am going to Worcester" - you know going in opposite directions. But that has seized now. This is all normal because of the anaesthesia or sedation that went much deeper this time around than last time. I was booked off for a week to recover, not allowed to drive for a day or two, and need to see the physio in a week or two's time. Then it is waiting it out for a month, while doing post-op physio, to see if the Rhizotomy is starting to work. I have been warned that there may be ups and downs and that I might feel sore for a few days, where after I might start to feel better, before it hits me again. Our bodies just never stop the battles. Even when we sometimes choose to, our bodies never do, until it does not have the strength to do so any more, and even then it will give everything for that last battle.

But how did Buddy handle this. Surprisingly well actually. Slightly flared up, but not as bad as I had expected. He did put himself in the corner again, sulking away (for what reason I still do not know), while feeling far away and disassociated from the rest of my body. So imagine the setting. I come home from hospital, sore, stiff, with a transact plaster on my neck, unstable on my feet etc, and I sort of try to get comfortable on the couch, with my feet up on a pouf, and cushions behind my back and neck. Mufasa, the cat, is very excited that I am home, so he immediately jump on the armrest of the couch, to the left of me, so that he can be as close to me as possible. Teresa takes a cushion and lies with her head in my lap - on my right side. So I decide to take Buddy and put him on her leg. However...all that I feel is my arm up to my wrist on Teresa's leg. Buddy feels like he has dislodged himself from the rest of my arm, and is sitting, sulking on the edge of the couch, way....wayyyy...wayyyyyy back behind Teresa. 

Now here is the funny part. Animals, we all know can be very intelligent. Mufasa knows that if he wants to play, he does not play with Buddy - he attacks my left hand and we'll wrestle...but Buddy, he will sniff and he will gently put his head against him (Like Toothless in How to train your Dragon). I did not teach him that, he just instinctively figured out that Buddy is special and that he should not mess with him. So I decide, to hell with this, and I take Buddy to softly start stroking Mufasa's head where he is lying close to me. Mufasa immediately jumps up and meow, and then bite towards Buddy, something that he would never do, and he dodges away from him, as if he has seen a cobra. I take my left hand and put it on Mufasa, and Mufasa calms down, while carefully watching Buddy, and he starts to purr. So I put Buddy back in the corner. Even the cat, that is usually very cautious towards Buddy, knew that Buddy was having a moment, and he was not in the mood for Buddy's tantrum. But eventually Buddy got over himself and we started talking again...and even Mufasa allowed him back again, with some reservation.

In the meantime I continue with pain meds for my neck, as well as the normal meds for the CRPS. I have been off the Cymgen for a couple of weeks now, and emotions is starting to return slowly. The worst part of this is that the negative emotions, or the emotions that makes you feel like crap or like you are having a bad day or that you experience when something happens, were the first to return. And then, probably because of that, came the frustration and the irritation. Now, it is still awkward having some "dead" emotions and having other emotions that are slowly returning, and I am dealing with that every day. Still it is much better than being fully cut off emotionally from every one you love and care about. Over the weekend I was very irritated, and everything was just becoming too much...and then Teresa came in and jokingly said that she wondered when she was going to get scolded, and she hugged me...and for the first time in months I burst out in hysterical laughter, so much so that I tried to say something, but I could not - no matter how hard and how many times I tried. But yes, believe me there are bad days, and there are days that the irritation levels are so high that you want to stay out of your own way. The problem is that you can become so "comfortable" or engaged in being irritated because of what you are going through that your body naturally starts using it as a shield or armour. And this is probably one of the hardest emotions or senses to deal with and to control, as it is often driven by pain and frustration and self-preservation.

Medical Aid Funds

One of the things about CRPS that I have not really touched on yet, is the enormous strain that it puts on your finances, like many other illnesses does. Meds and treatments are expensive, especially when it is a chronic necessity that is not met as such by the medical aid. We are in April now, and my treatments has already drained our finances and our medical aid fund. Yes, there were other medical expenses for the family as well, but the biggest punch was my CRPS treatment. If the medical aid would just have made the decision to approve the medication to be paid from the Chronic Health Benefit, it would not have been a problem, but they are rather willing to cover a R300 000+ implant, that I am not comfortable with and still do not need at this point, than covering meds, that help me to cope, under chronic health benefits. And I know that a great deal of CRPS warriors goes through exactly the same thing. But it seems that no medical aid listens to those that suffer from CRPS, or even to the professional doctors that fight for us and for the treatments to be placed under chronic health benefits. The rule that medication that is needed for more than 6months, is seen as chronic medication, unfortunately does not apply to CRPS - as with some other conditions - double standards if you ask me. And even if the Medical Aids acknowledge the existence thereof, it does not make a difference. This may lead one to believe that there is more money and profit to be made in promoting a SCS implant with a 50/50 (optimistic) success rate, than allowing well needed medication to be approved under the chronic health benefits - where it can still be strictly monitored (and which costs a fraction of the cost and sustainability of an implant).

It does make you wonder how much of a medical aid fund's mission statement is to really improve human health through non-invasive and more traditional treatments, for the benefit of their members, and how much of that mission statement is actually to make greater profit at the cost of their members. Invasive surgery should be priority where needed, but when traditional non-invasive treatment can assist and prolong health, and assist with coping better with incurable diseases and syndromes (like CRPS), in a controlled environment, it should not be dismissed due to greater profit margins. Please note that I do not work for a medical aid fund, so this is only my perception, my observation - but one that I feel is shared by many other people as well.

Yet, when you start to read up about medical aids, it states that medical aids are seen as non-profit entities that ploughs the money, that members pay collectively, back into the fund to better cover medical expenses of the members. This however is not the message or experience or perception that is often conveyed to its members. When you look at what CEO's of some of the top medical aids earn for example, you will be shocked.

On 7 November 2018 an article was published in Businesstech, with the heading:

R20 million payday for Discovery CEO Adrian Gore

A portion of the article reads as follow:

Group CEO, Adrian Gore, was rewarded with a total package of R19.8 million, including a R6.6 million basic salary, a bonus of R7.8 million, long-term incentives of R4.1 million and other benefits of R1 million and R313,000.

Overall, Discovery paid R138.6 million to its executives in South Africa, R84 million to its executives in the UK (GBP4,532,404), and R14 million to its director in the US (USD983,762).

Yes executives and managers need to be paid a fair amount according the value and the other skill(s) that they bring to the company, as should be the case in any business. But how is it that these pay-outs are so astronomical, and yet members cannot afford to get the treatment that they desperately need because of red tape, which, when you often challenge it, is not backed by medical science or medical professionals in those fields, but by introductory admin and call centre staff that has no medical background, and seem to be trained to get rid of members with pre-taught phrases and answers as quickly as possible. These are the people that you get on the line when you voice your concerns. 

I have been in a situation before where a medical aid consultant with no medical degree whatsoever, tried to convince a specialist surgeon, whom has been studying and working in his field for years, and that have done extensive tests on Teresa, that a threatening stroke is not cause enough for submitting someone to hospital. So this was a couple of years ago and we were at the Specialist office the day, and Teresa is very sick and need to be submitted to hospital. The Doctor's receptionist phones the medical aid to get authorisation so that she can be submitted for further tests and treatment, as her symptoms (and LUPUS history) points towards a possible stroke. The call centre agent tells the receptionist that she cannot give authorisation without a treatment plan. The doctor gets on the line with them, explains everything, and still the call centre agent refuses to give authorisation. Eventually the doctor uses a different IOD code just to get her submitted, and also not too soon.

Of course, I am furious and I get back to work and I call the Medical Aid. Who do I get? The call centre agent. Great! I soon realise that I am getting nowhere and I ask to speak to a manager, which eventually after a long battle happens. In the meantime, I write a letter to the ombudsman and the Medical aid, while I wait for this manager to speak to me. I start by asking them their qualifications to make these life altering decisions, which at first they are reluctant to give. Eventually they confirm that they are not doctors and have no medical degrees and just do what they are told by the system. I ask them, "should my wife die, because they would not trust a specialist surgeon with years of experience, what then". They cannot answer me. Long and short of the story, I get a phone call from someone else at the medical aid later that day to say that they are very sorry, and that this should not have happened. The fact is that I agreed with her that this should not have happened, but it did. The next day I arrive home, and find a fruit basket under my braai, with a note from the medical aid saying, "Sorry for the inconvenience". Moral of the story, the message that they sent me, their member, is that a fruit basket need to fix what they are not prepared to value due to incompetence. Years go by, same medical aid, same scenario when her appendix burst, just after she had a miscarriage. Their comment was that this should not have happened, yet years later it still happens and keep on happening. Only difference - this time there was no fruit basket.

 

Medical aids are there to also take the mental and financial strain off patients in order to promote recovery and wellbeing, but how often exactly the opposite happens. Patients are being denied medicine on Chronic Health Benefits that they need to treat or cope with various diseases and/or syndromes. My own medical aid will be the first to tell you that they acknowledge CRPS and that they are willing to fully fund a SCS implant - no co-payments from my side - BUT they are not willing to put my medication on Chronic health benefit as they do not feel that there is enough cause/evidence to do so - even when I have been in treatment for two years. In what sane world does that make sense? Whether it is schedule 4 or 5 medication, it need to be reviewed every 6 months according to law They promote "prevention is better than cure", and they run programs to promote healthy living, yet they rather allow invasive procedures than traditional treatments. 

I remember when Teresa was diagnosed with SLE, the safest medication for her to use, with the least side effects, would not be approved on chronic health benefits by our medical aid, as the government felt that we did not have enough malaria cases in the country to validate this. The meds that she needed, were the same medication that helps against malaria, but regardless of doctors fighting with case studies to show that it treats Lupus, SLE, MS and various other diseases, we still had to pay the medical council a certain amount every 6 months just to get permission that we could import and buy 6 months’ worth of medication from the US. The fact that this medication was much safer for Lupus sufferers, even during pregnancy, did not carry any weight with the government or the medical aids. Even her pain medication, although this was covered by the chronic health benefit, was only about 15% paid by the benefit. Specialists fought against this to no avail. The same goes for my son's medication that he has been on for the last 4 years already - seen as chronic, but not approved under chronic health benefits. With CRPS, I have found that we are in exactly the same situation.

Because the medication is essentially medication that is used for epilepsy and/or depression, but also helps to cope with CRPS, they do not see enough reason or proof to approve it for CRPS under the chronic health benefit. I understand the issue with the fear of addiction, but putting medicine under a chronic health benefit would not increase that fear any more than having to pay for it from your MSA or even your own pocket, which in effect is what is happening as it is needed but not covered under the chronic health benefit. In both instances, the medicine, and your condition, need to be reviewed every 6 months - some cases even less than 6 months. Certain scheduled medications require a monthly prescription - which could still be done, even if it were to be under the Chronic health benefit. I understand that there are a lot of factors to be taken in consideration when the medical aids make these rules, but at some point they will have to start thinking of the people that pays loads of money to have a medical aid, but for whom the treatments that they so desperately need are still so far out of reach due to red tape like this. Why, for example, would you get let’s say R15000 Chronic Benefit cover for the year, but they refuse to cover the treatment that you need from it. So instead they rather pay it from the MSA and day-to-day benefit, draining your funds when you need it most? Meanwhile the medication are being used as chronic medication.

People should not need to suffer from a disease or incurable illness, and have to worry about their finances and how they are going to cover their treatments for a better quality of life, when they have medical aids that would not meet them where they need it most. Promoting reward health programs and gym membership and all that stuff unfortunately often promotes better quality of life only for the healthy, and often disqualifies the sick. People that need chronic medication, and that cannot afford it, cannot afford these so called healthy living programs in any case. Medical aids should first take care of the treatments that they need in a way that is affordable, under Chronic health benefits, so that members can start to benefit from these healthy living programs that they offer. But then again, as I said before, this is my perception, my experience....but I do believe that more changes need to be made.

Continuing to push my limits

I have mentioned before that one of the things that I have learned the past two years is that I cannot afford to ignore or neglect Buddy. Obviously I am aware of him and of the pain and burning and his tantrums. What I mean however is that I cannot afford not to challenge him. Yes, as it is my dominant hand, I use it every day as normally as possible, but I am trying to take on more and more projects to challenge him. And the projects, although still at a slow pace, do pick up. Some days I am able to do stuff that I could not do the previous day, and other days it is reversed. Fine motor skills are still challenging, but by continuously challenging myself, it does not necessarily become less painful, but it does build towards my endurance and improving my skills. When I think back on two years ago, for example, when writing and drawing was really a challenge for me, I remember how I were able to push it for 15 seconds only before my hand became so painful and burning that I had to stop. Today however, it has become much longer periods, although the pain and burning is nog gone, and it still limits me to a degree. The fact is, if I have not started to push my limits, I would not have grown and overcome a great number of obstacles. The only difference being that my current limits, might not have been the limits of two years ago. Those limits were much further, much higher, than it is today. But I cannot let that stop me.

I recently made a weathered looking tray for my wife - my first try on doing a weathered look. Took me two weeks. Buddy did not enjoy the fine skilled work, especially not the sanding. But I have learned that the more that I do stuff like this, the more my brain starts to rewire itself, and the more Buddy and myself become in sync - not without issues - but with mutual respect.

DBT: Interpersonal effectiveness

In the previous chapter we spend some time on Mindfulness. It is also something that I have started to do together with Malan, my oldest son the last week or so. As he is a very anxious child, his doctor proposed that we try it. The first time he did it, he said that he felt more relaxed, more calm and we noticed that certain tics like sounds and gestures that he always has, stopped after he has done it. Our goal is to do it every evening before he goes to bed, but I am also trying to teach him to just close his eyes when he has a bad day at school or becomes anxious, and do a couple of deep breathing exercises...and he says that it does help.

So in this chapter we are going to look at the next step of DBT, namely Interpersonal effectiveness. The name implies it all. It is a skill where the focus is on learning how to cope with people around you and relationships and stressful environments.

It is a skill or process where you learn that it is allowed to, and that you can say NO to a situation or request - something that we often are too scared to do. You learn how to communicate clearly in such a way that when you disagree, people will not experience you as hostile. You learn the skill to ask for what you want, without fear of rejection and while maintaining your self-respect. You learn to have a functional and healthy relationship with others. You learn the skill to balance priorities vs demands. The idea is to build positive relationships and social skills in order to overcome social awkwardness.

One of the major things about CRPS that we have spoken about in the past if this whole disassociated behaviour that often comes as part of the disease. Socially you tend to become cut off from friends and family for reasons that we have spoken before in other chapters. And because you become disassociated and socially cut-off, you become guilt-ridden because you have to say NO to so many things, so often, because of the pain you are in. Interpersonal Effectiveness helps you to deal with this in a healthy, non-threatening way. It helps you to be able to say NO through healthy communication. It also helps you to say YES on your own terms, while being open, honest and respectful towards others. The idea is to enable you to narrow or close the gap, that CRPS has created between you and the rest of society. It teaches you how to deal with conflict in a healthy and positive way.

Ways in which these skills are taught is (https://dialecticalbehaviortherapy.com):

So this has a lot to do with relationships, building or re-building trust, acknowledging boundaries and mastering communication - things that are often lost due to what CRPS does to you. A whole lot of coping with CRPS I have found, is based on putting in the work and "getting over yourself", while you do not have the strength or the motivation to do so as you are living in constant pain. But no big battles have ever been won, by sitting on the side lines waiting for stuff to happen. It is often the small battles and the small changes in life, that brings about the bigger life changes. My battle and my limits, may seem small in relation to other people's, like for example people fighting for woman's rights or gender and race equality etc...but it does not make it less important. If something "simple" like relationships, pain management etc is valuable to you, then it is worth fighting for. So how do we change the mindset or way in how Medical Aids treat CRPS? In exactly the same way. We start small but firm, where it really matters. We need to make them aware of what CRPS warriors are going through, what they need and how the decisions that the medical aids make, impact their members. If we want to see change to how CRPS warriors are treated and how our treatments are managed, we need to help them understand what we are going through. Perhaps their rules may not change in our life time, but then at least we have stood up to become trendsetters for the next generation so that they do not have to suffer the same struggles that we do. Never give up!