CRPS My Journey: Chapter 22 - Autoimmune or not - The Most Painful Disease known to Humans!

Economic hardships

One of the things that they tell you in the briefing before a flight, is that, should there be a drop in cabin pressure, to put on your own mask first, before you assist your children. You do this so that you will be able to assist them, as an unconscious parent, due to a lack of oxygen, will be in no state to assist small children, but will need help themselves. This may sound selfish, but do make a lot of sense. If only life could always be as clear cut as this. Life, unfortunately, is not always black and white. Often there are a lot of grey areas in between, and at times, even those grey areas have different shades of grey.

So while a parent's inherent nature is to protect your children at all cost, it does not always come without a price. A while ago, I was placed in that position due to financial strain. Our medical Aid is depleted, and as you know by now, Medical Aids refuse to see managing pain as reason enough to authorise certain medications to be included as chronic medication. So what do you do when your medical aid is depleted? You start paying out of pocket...until you are not able to do so anymore.

As with all things in life, life happens regardless of whether you are prepared or not - and most often the impact is much worse when you are not. With everything going on in the world right now, many households are struggling to survive, as the rise of inflation, interest rates, fuel prices, basic utilities, food prices, devaluation of currencies etc., is not in line with the increase in salaries. For example, R1000 today, has much less value, than R1000 a year ago, yet interest rates and the cost of living has risen multiple times in the last year. Now for a household to "survive", the assumption is that you need to be able to pay all your bills, put food on the table, fuel in your tank and at least break even - if there is money to put away as savings, then it is a bonus, but in survival mode savings is not a given. The unfortunate truth for many families are that, where they may have been able to go in survival mode a year ago, even with extra income, salary increases and so forth, they are not able to reach that level of survival mode any more, and it feels that they are slowly drowning. 

This also happens with medical aid. I am not going to go into this too much, as we already touched on this in Chapter 20, but I do want to say something about the Chronic Benefit and the effect that being denied this benefit has on patients that need the medication. The money in your savings account, that your premium was able to buy, might be the same, or perhaps even more than a year ago, but as with the rest of the economy, medical costs have increased, leaving you with much less in your pocket. And when you need to use chronic medicine, which the medical aid refuses to pay from the large amount available in your chronic benefit - in certain cases unlimited funds, it depletes your savings and day-to-day benefits even faster. So at the end of the day, we are paying for a benefit, that is in actual fact a loss of income to us, as it only acknowledges 26 chronic diseases - and even then there is no guarentee that these 26 diseases will be fully covered, if at all. Thus, part of your premium goes toward a chronic benefit that is available should you need it, but denied when you need it. So if in a family of 4 you need chronic medication to the value of R2000+ per month, that means R24 000+ per year worth of chronic medicine. That money is in your fund, under the chronic benefit, but the fund denies you the chronic benefit - that you pay for. This forces you to dive into the savings and day-to-day benefits, and eventually, much sooner than you think, out of own pocket.

So whatever portion of your monthly premium is allocated towards the Chronic Benefit is basically going into a bottomless pit when you cannot use it, due to certain terms and conditions. In fact, even when you are able to use this benefit, it does not guarantee that your medication will be covered in full by this benefit. Don't get me wrong, I do understand that they need to prevent people from crying wolf (in other words claiming for certain medications as a result of being dependant on it without needing it), but when you have a fully diagnosed disability or disease that is strictly monitored, I think it does make a difference. That certainly need to count for something. I know of numerous warriors that are fighting this same battle, even to the point where they have approached the Council of Medical Schemes and even the courts. This however, can be a long and treacherous process, without any guarantees. And the outcome is determined by the legal backing of the medical aid, more than how strong of a case you, as an individual, present. I myself have started battling my medical aid in this regard. A month, and still no feedback other than they will come back to me.

A story that I recently came across is that of Lyla McCarthy, a 10-year-old girl that has been diagnosed with CRPS. Although there is evidence that, the sooner treatments begin, the greater the outcome, her mother's medical insurance immediately denied her the treatments. Click on the following link to see Lyla's story:

Lyla's story

Going Cold Turkey

Perhaps you have heard of the term "going cold turkey". This means to "withdraw abruptly and completely by a sudden ending of taking your medication". Basically the same as a drug addict that just suddenly stops the drug abuse. Not a recommended action for any person that needs chronic medication. So what do you do when you are a dad that uses chronic medication, and you have a son that needs his chronic medication, but your funds are depleted and out of pocket is not an option? Well, I have been in that situation a few weeks ago.

This is one of those situations in life where there are grey areas in life, until you decide to make it black and white. Being a dad, the last thing that you want to see is your child suffering. Malan, my oldest, need certain medications daily to help him cope with anxiety and focussing. He is not a difficult child, nor is he one that bounces off the walls. Apart from being an introvert and a perfectionist, he struggles to handle emotions, sensory overload and to operate outside of his own world or bubble. He is a very loving, bright and creative child, but he needs that extra help to get him through life, or rather to help him cope in life.

So with both of us having to be on Chronic medication (in his case schedule 5/6), we are both in the situation where the medical aid refuses to pay our medication out of the chronic benefit, despite myself being diagnosed for two years, and him being on this medication for the last 5-6 years. With him still learning to cope with life, especially where he is entering his teen years now, and myself having learnt so many coping skills in the last two years, the grey area, suddenly became very clear, and the outcome much different than being on a plane with cabin pressure drop. In my mind it was clear. The only way to get through this, was for me to go cold turkey, so that he could continue with his medication, especially with his exams drawing closer.

Perhaps not the best thing for a CRPS warrior to do, but then again I am a father first, and then a CRPS warrior. (My perception) And I reckoned that I would be "okay...ish", seeing that I have some coping skills to fall back on. I may not be the father of the year, but when it comes to my kids and their wellbeing, something like this is not an option or debateable. My children come first. And it is not as if I would drop dead or anything, I would just have to be prepared for increased pain and burning and other possible side effects - how bad could it be...

So how does it feel to go cold turkey? Well much like before you go off the meds, just in way greater over drive. In my case increased irritability and exhaustion, lots more pain and burning, full body sensitivity increase, increased and decreased appetite, nausea, increased disassociated behaviour, heart palpitations, lack of sleep and increased anxiety. My neck flared up more, as my hand flared up, and my hand started flaring up towards my elbow. So how did it affect Buddy? You know like in Hulk, Venom or Jekyll and Mrs Hyde, where the alter ego or alien or personality wants to take over, and break out of that human shell...well more or less like that. Chucky was ready and wanting to break free and take control again, literally shaking to get free.

A year ago, this might have scared me or be problematic for me, but having learnt some coping skills, I had something to fall back on. Yes, I had to work twice as hard on my coping skills, and perhaps it has set back my progress somewhat, but the alternative would be much worse. If I were not able to do this, Chucky would come alive again...and I could not afford that. Just as with the Cymgen, I do not regret going cold turkey. It was not as if I thought it may be a good idea to be reckless, but I did see this as a learning curve that also taught me what I can and cannot handle when I am not on the medication. Remember that for almost two years I have been on medication to slow down the messages to my brain, while my brain did not recognise my hand as part of my body. So in a sense I have forgotten what it was like to be without those meds. And I have read up a lot about possible reactions or side effects for going cold turkey. And if I did not have the skills in place, that I do, I probably would not have done it, but would have had to look for different solutions to the problem. So in no way do I recommend to anyone that going cold turkey is the thing to do. In my personal case, at the time, it was the right thing to do, to rather have my son, that do not have these coping skills yet, get the medication that he need.

But, that is the heart of a father. We do what we need to for our children, so that they could have a better life. I remember a couple of years ago when I was going through a tough break in the business and had to take a job as a janitor at a school. People would come up to me and say, "You were in a Provincial Management position and thereafter owner of a business. Now you are a janitor." And my answer would always be the same, "I am a dad first, and as a dad you do what you need to provide for your family. Status does not put food on the table. Money puts food on the table. What does it help to have status, but I cannot provide for my family?" I would give my left kidney in a heartbeat, should one of my children need it. Going cold turkey, so that my son could have his meds, was not a sacrifice, it was not a heroic gesture. It was purely a dad loving his child so much that he was prepared to put his son's needs in front of his own.

But as I said, it is not always that easy. There are times when you need to make the more difficult, almost selfish, decisions like putting your mask on before you do your kids, so that you are able to take care of them. I remember back in 1985, at eight years old, I wrote the following on the 1st page of my Bible: "It is better to give than to receive, but sometimes you need to be able to receive, so that you are able to give". I think a lot of us struggle with the receiving part as it makes us feel vulnerable and needy. We were brought up and taught that it is better to give than receive, and that "self-love" is a sin - ignoring the part that says "Love your neighbour AS YOURSELF" (Matthew 22:39). How does this have anything to do with what we are talking about? If I have not opened up myself to receive the guidance and instruction from others to build and develop my coping skills, I would not have been able to give myself in this way when my child needed me the most. So although I had to go without my meds, I looked after myself by focussing on my coping skills, while still attending to the need of my child. Hope that make sense.

But yes, don't go cold turkey if you do not have to. CRPS does not like it! Remember, I have the luxury of looking back on the past two years and draw from what I have learned. There are warriors that are in early stages that do not have that luxury yet. Also, there are warriors that have been using certain medication for many years, who definitely should not go cold turkey. Speak to your doctor first, so that you can be educated and prepared for what you will experience.

CRPS and your Immune System

A lot has happened since February this year. I had a cold, landed in hospital with cellulitis, got the flu again, went for the Rhizotomy, got an abscess in my nose cartilage that made me quite sick...and now I have the flu again...And all of this happened without skipping a beat, despite all the vitamin supplements. Battling the flu this time around is different than before. Perhaps it has to do with going without my meds. Yes, I have been back on my meds for a week before I got the flu, and I have become used to Buddy giving warning signals that something is coming, but not like this. It is as if my whole body went in super hypersensitive mode. Buddy flared up with pain shooting up all the way up my arm. My neck flared up so bad, running pain down my shoulders and back, with pain mimicking a pinch sciatic nerve. And these were not even the normal flu symptoms like the fever and body aches and so forth - that was just to seal the deal. It is bad when you try to sleep, but the blocked sinuses and post nasal makes it hard to fall asleep, and then eventually when you fall asleep, you do not really sleep as your hand is in so much pain, and constantly pushing that pain up your arm, so that you cannot get into a comfortable position. And entering our cold and wet winter season does not help either, as the cold is just creating havoc with the pain signals in my hand.

This has led me to start reading up on the effect CRPS has on the immune system. Although CRPS is not an auto-immune disease per se, I do believe that it plays a major role in how your body treats or sees your immune system. If my brain can change its perception of my hand, and how he treats my hand as result thereof, then it definitely can change its perception of my immune system, and how it reacts to that. And if what I have learnt about the relationship between CRPS and a lack of sleep, or CRPS and lack of exercise or CRPS and temperature variations is true, then I can, with a fair amount of certainty, say that there is also a direct link between CRPS and a compromised immune system. So it may not be an auto-immune disease per say, but it does weigh down on one's immune system.

So one of the studies that I have read on this, states the following:

Immune system involvement—The C-fibre nerve cells also communicate with immune cells to help us heal from injury. Excess or prolonged nerve signalling can dysregulate immune cells in the affected limb, as does CRPS-associated poor circulation. You may have elevated local levels of inflammatory chemicals called cytokines that contribute to the redness, swelling, and warmth in the CRPS-affected limb. CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma. Some individuals with CRPS may have abnormal antibodies that promote an immune attack on small fibres. 

(National Institute of Neurological Disorders and Stroke https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/)

Another study suggests the following:

Recent observations indicate that CRPS may be an autoimmune condition, in which a person’s own immune system starts to attack healthy tissue. For example, in some autoimmune conditions, plasma cells (found in the blood) start to make large amounts of proteins called antibodies which attack the body. To treat this, blood can be extracted and filtered to reduce the number of antibodies present in the blood, before being returned to the patient. This is known as plasma exchange therapy, and initial data suggests that people with long-standing CRPS experience dramatic pain improvement following this treatment. The researchers will use this knowledge to study mice with a CRPS like condition. This will allow them to identify which nerve cells are responsible for the pain signals, and how CRPS antibodies work with them to cause pain. (https://www.versusarthritis.org/research)

Although this is only two of numerous studies that have been done on CRPS, it does point towards the possibility of CRPS being either classified as an autoimmune disease, or at least having a major effect on your overall immune system. However, a lot of research still need to be done to eventually confirm whether CRPS can be diagnosed as an autoimmune disease or not. The problem? Well it is in the name..."Complex". Because this disease is so complex, so much is still to be discovered and studied. It is a disease that was given a name more than a century ago, but still so little is known and understood about it. As a result, treatments are done on a trial and error system. And it is not that all medical professionals just want to put a plaster on it and send you on your merry way (although you do get some of them that do). It is a simple fact of sometimes they just do not know. And as said before, there are medical professionals that have never before heard of CRPS. A very strange, but true fact - even though the first case of CRPS was diagnosed or given a name 159 years ago. Shocking! The disease is so complex, that what works for one warrior, does not work for another. And it seems that, from these studies, it also has a lot to do with your immune system, your family's medical history, and whatever other medical conditions you struggle with.

One thing that is definitely clear from these studies, is the fact that CRPS, whether autoimmune or not, definitely affects your immune system. Which makes sense to me, when I look at symptoms of SLE for example: always tired, always in pain, struggle to heal from even the normal cold - usually gets it much worse than people that do not have autoimmune disorders - flare-ups in the areas where SLE attacks the body caused by various conditions etc. With CRPS my experience is that it mimics or follows the same patterns as with auto immune disorders. And as I realised the last couple of months, battling CRPS cause you to focus all of your energy on just that, so that the rest of your immune system are exposed for attacks. And unfortunately your body just do not have the strength or energy to spare, causing your body to lower its defences so much so, that when you fall ill, it becomes this vicious cycle where you just cannot build up enough immunity against viruses and bacteria. On another level, if you take in consideration the fact that your brain and your affected body part is not communicating with each other as it should, it can be seen much in the same way as an autoimmune disease, where the body's immune system is attacking its own healthy cells/tissue. With CRPS, much like lupus, SLE, ME and numerous other autoimmune diseases, the body is at war with itself. YET, it is not classified or accepted by medical aids as a chronic auto immune disease. If it looks like a duck, quacks like a duck and swim like a duck, it surely must be a duck. Unfortunately, in the case of CRPS, it is not seen that way.

There is currently a documentary on Netflix, that is an absolute must see called "Taking care of Maya". The true story of Maya Kowalski who fell ill at age 9, was diagnosed with a bad case of CRPS and how she and her family was let down and mistreated by the medical and court systems - much like Lyla's story. It shows the devastating effect it had on her family. It is horrific that there is so many untold stories of warriors that has been neglected and mistreated by the system, much like Maya and Lyla. This is why it is so important to get the message out there and to educate people on CRPS. Almost 160 years, and we are still very much in the dark about CRPS and the effect it has on the human body and on our families. Let's hope it will not take another 160 years for medical professionals, medical aids and the courts to acknowledge and treat CRPS warriors with the necessary urgency, respect and care that we deserve. I am one of the lucky ones to have a medical team that have an understanding of CRPS and that goes far and beyond to help me. Others are not so lucky.

DBT: Distress Tolerance

In the previous chapters we touched on Mindfulness, Emotion Regulation and Interpersonal Effectiveness. I am closing off this part of DBT with Distress Tolerance. What is Distress Tolerance?

Distress tolerance: This involves understanding and managing your emotions in difficult or stressful situations without responding with harmful behaviours.

Thus, let's say I have self-harm or suicidal thoughts due to the pain. Distress tolerance would be to understand where these emotions come from and how to manage them. The goal is to not respond to those emotions by giving in to them, but rather to deflect that emotion by doing something else that is more productive or and in essence the total opposite. It does not mean that you are in denial. You have to acknowledge that emotion in the moment, without giving in to the emotion

Distress tolerance skills help you accept yourself and your current situation. It teaches you various techniques that helps you to cope with intense emotions, with a positive long-term outlook, such as:

• Distraction - Make a list of distracting activities to use when you start to approach emotional crisis.
• Improving the moment - Reconnect with the present moment when thoughts about the past or future are becoming unproductive. Learn how to become accepting of realities without unproductive emotions. (Radical Acceptance)
• Self-soothing - Use your five senses to help reduce out of control emotions.
• Thinking of the pros and cons of not tolerating distress - See what problematic behaviours are costing you and whether it is worth making a change.
• TIPP - Calm emotions with Temperature, Intense exercise, Paced breathing and Progressive muscle relaxation.

The idea is to put your body in charge of your emotions, rather than your body acting on or following your emotions. For example: "Run up and down the stairs. If you're inside, go outside. If you're sitting, get up and walk around. The idea is to distract yourself by allowing your emotions to follow your body."

The reality is that the pain and burning that CRPS brings, tends to take you on an emotional rollercoaster. That is why CRPS is duped the Suicide Disease, as many warriors cannot deal with the intense and constant pain and burning to a point where they see amputation and/or suicide as a last and final resort in dealing with CRPS. The aim of Distress tolerance, and DTP techniques as a whole, is to stop warriors before they get to that point, and to show them that some quality of life can be possible, despite what they are going through.

 

To read more about DTB, you can follow the following links:

https://www.verywellmind.com/dialectical-behavior-therapy-1067402

https://my.clevelandclinic.org/health/treatments/22838-dialectical-behavior-therapy-dbt

https://dialecticalbehaviortherapy.com/

Thank you for taking the journey with me over the last two years. I may be taking a break for a while...unless I have more to share😉. This is definitely not the end of my journey and I will keep you updated on what's happening with the medical aid, as well as my health. The most amazing part of this blog thus far has been to be able to help other warriors by putting into words what so many of them did not know how. Thank you for the opportunity to allowing me to share my journey and my own personal struggles with you. 

I close off this chapter with another video clip that explains what we all experience every day of our lives. Take care!

CRPS: The Most Painful Disease Known to Humans [complex regional pain syndrome]

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!

CRPS My Journey: Chapter 19 - Truth & Perceptions!

Truth

Truth may seem clear cut, but it is not always that simple. Well...not the Truth itself, but rather one's perspective on truth. The truth is constant, it is what it is, but how you and I view that same truth may differ vastly. When the apple falls from the tree, it falls. That is the truth. The fact is that the apple fell from the tree. Our perception of that truth may differ however. The person standing behind the tree had a totally different perspective than the person standing in front of the tree, or to its left or right. To the person in front of the tree, the apple fell because of a gush wind that he noticed. The person behind the tree perhaps saw someone shooting the apple, while the person to the right of the tree saw that the apple was eaten away by birds. The person on the left of the tree saw the apple hanging on the tree, and the next moment lying on the ground. Who of these people were right? All of them. The truth was that the apple fell from the tree. Everyone's perspective of how that happened, was different because of their angle of view of the same incident.

If I were to place a box under a cloth and ask 4 people to sit on either side of the box and I lift the cloth, what would they see? Yes, a box. That is the simple communal truth. If I ask each person to describe what they see, what answer do you think I will get? Yes, four different accounts of the same box. Someone might see a drawing on the box, another might see writing, yet another may see a hole in the box, and yet another may see a sticker on the box. So again who is right? All four of them, as the communal truth is the box, but their view or perception of that truth differs. Person number 1 cannot say that person number 3 is wrong because number 3 sees a hole that is not there, while number 1 is clearly seeing a drawing. How would person number 1 know that person number 3 is telling the truth? By standing up and moving into the position of person number 3. Person number 1 need to be able to see the truth from person number 3's perspective.

The truth did not change. It still is what it is. So what changed. The way we perceive or view the truth. And that is where conflict over the Truth often occur. We need to get out of our own comfort zones and get into the shoes of the other person (Figuratively speaking), and view the truth from their perspective. When we look only from our own perspective, we are like a horse with blinkers on that sees only a partial truth - a one dimensional truth. So many conflict can be avoided if we learn to look at the truth from various perspectives, even if it makes us feel uncomfortable.

Recently I was speaking to a good friend and I shared the following. When I was diagnosed with CRPS I had to learn that I cannot live by what I perceive or assume how Teresa would react or see me. We build these images of the people we are closest to, without really listening and understanding, and we act upon that, rather than the truth. And everyone looks at the truth from their own perspective or point of view, assuming the worst in others because their view of the truth might be different. 

The Truth in this case was my CRPS diagnosis. The perspective? My assumption that Teresa would see me as less of a man. My belief that I need to be the strong one, the one that need to be there for her - always - as I have tried to be during the last 20 odd years that she has had SLE. My fear to burden her with my health issues. Her perception: Me shutting her out and not wanting her to share my burden. Did the Truth change? No, the Truth was still me being diagnosed with CRPS. So what was the issue? Our different perceptions of the truth. I had to change my response and my perception on the truth. I had to let her in and I had to trust that she would be strong enough to share my burden, as I have shared her burden for so many years. I had to allow myself to be the weak one and allow her, and TRUST her, to be my strength.

I read the following the other day, which sums this up:

The man doesn’t know that there is a snake underneath. The woman doesn’t know that there is a stone crushing the man. The woman thinks: “I am going to fall! And I can’t climb because the snake is going to bite me! Why can’t the man use a little more strength and pull me up!” The man thinks: “I am in so much pain! Yet I’m still pulling you as much as I can! Why don’t you try and climb a little harder!?”

The moral is— you can’t see the pressure the other person is under, and the other person can’t see the pain you’re in. This is life, whether it’s with work, family, feelings or friends, we should try to understand each other. Learn to think differently, perhaps more clearly and communicate better. A little thought and patience goes a long way. ❤️

~ Author Unknown 

What makes facing the truth so much more difficult is, that besides people's perspective on the truth, people often tends not to be transparent. Perhaps it is due to hidden agendas, or perhaps it is selfishness or a lack of trust. As humans, we often think that people are out to get us. We often think that people have ulterior motives, and this is not always an unfounded fear, as, unfortunately, some people do have ulterior motives. The issue with living a life where we always see the worst in people however, is that we lose the ability to discern when people are truly faced by a truth that alters their lives in a way that they really need support and understanding. 

The truth, which in this case is CRPS, is the one common denominator that unites all CRPS warriors. Our perceptions or our experiences of what that truth means in our lives however may differ vastly. How do I know if, what the other person is experiencing, is the truth? I need to try and put myself in their shoes, look from their perspective and try to understand from their experiences - not my own preconceived ideas or perceptions. Being in my line of work, I am always busy with risk analysis. But what is Risk analysis? I can give a well-educated answer to this, but if I need to break this down in simple layman's terms I would have to describe it as this: Looking from different angles and through different perspectives to the same Truth in order to minimize risk and to create a safe environment. So how do I approach a truth like CRPS? In exactly the same way. I need to view it from different angles and through different perceptions in order to understand other people's experiences of it.

DBT (Dialectical Behaviour Therapy)

In the last chapter I started talking about DBT. The main focus of DTB is to teach people skills or strategies to help them live their best and most productive lives. It is helpful for people with depression, addictions, PTSD, anxiety etc.

The four core skills that we will discuss is:

1. Mindfulness - the core skill in DBT is being able to non-judgmentally observe yourself and your surroundings. You will become more aware of the physical and mental triggers that cause runaway emotions.

2. Distress Tolerance - deal with painful situations. When you can't change the situation, learn how to tolerate it, accept it, and move forward.

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

4. Interpersonal Skills - change the way you communicate so you get more out of your relationships. Learn to communicate what you want. Become comfortable saying no.

DTB assist you in dealing with the common Truth in ways that help you to cope with it. In my case it is CRPS - that is the Truth. Every core skill that I apply is focused on helping me coping with that Truth. The first skill we will be focusing on is Mindfulness.

Mindfulness

Coming from a strict Christian Afrikaner background, yoga, meditation, mindfulness etc. were things to be frowned upon. It was seen as being part of Eastern and New Age religions and therefor seen by the church as being sinful in nature. And although there may definitely be those elements in Eastern and other world religions, as with everything else, anything can be sinful if you allow it to be. So when I was first introduced by Hesti to Mindfulness, I did not know what to expect, and I was understandably cautious. I soon learned that Mindfulness in itself is a management skill that we often misunderstand due to our limited, and often single-minded, approach to things that we do not know or understand. Mindfulness as a managing skill has nothing to do with having a religious or spiritual experience - it can be, but that is not the intended purpose.  

Mindfulness is a way of focussing on yourself, on your body, the way you inhale and exhale, becoming aware of things that we take for granted, things that come so natural that we do not think about it. Often we learn bad habits in how we breath, especially when you had a respiratory illness. Your often start to breath shallow. In my case mindfulness also helped me with correcting the way that I breath. 

I grew up in an era where we were taught that self-love was wrong and selfish and that you need to love others more than yourself and always place others first. The Truth however is, that if we do not love ourselves, how can we love others. If I do not take care of myself, of my own mental and physical state, how can I take care of others that suffer. In Matt 22:39 and Mark 12:31 Jesus says that we need to love our neighbour as we love ourselves. We were always taught to focus on the first part of these verses - love your neighbour - but were made to understand that love for yourself is wrong and selfish. And this could not be any farther from the truth. Jesus says to love our neighbours as we love ourselves - not more than we love ourselves. If we are to love our neighbours unconditionally and generously, then we need to love ourselves that way too.

Being mindful therefor refers to becoming aware of myself, of who I am, what I experience, what I feel and what I notice about myself. It is taking a break out of my day to calm myself and come to grips with myself, to just focus on me, so that I can cope better with whatever is troubling me, in order to deal better with 1. what life throws at me, 2. how I feel about myself (and Buddy) and 3. showing love and kindness to myself and those around me. 

There are various ways that people achieve or practise mindfulness. Whether it is in your quiet place where you spend time with God, or through music or the sounds of the ocean, or listening to someone with a calming voice - or whatever skill you use to achieve this - everybody need to find what works for them. I have my quiet times, but I also use a technique that Hesti introduced me to - especially when I know that I have a rough day ahead, or even in the middle of a challenging day. (I will post the link below.) 

Mindfulness is a process of rediscovering myself and seeing myself with all my flaws and shortcomings as equal. Not equal to others but equal to myself. In other words, in my case, with CRPS in my right hand, I can experience every part of my body as an equal part, without judging myself or my disability. I can be aware of what both my hands feel and experience, although it may be different, without speaking judgement on myself.

Mindfulness is the foundation of DBT. In order to move on to the other core skills in DBT one need to master mindfulness. Mindfulness helps you to be present in the moment. It helps you to feel life for what it is in the present and not live years in the future. It helps you to accept with the here and now, and not to worry about what may or may not be in the future, of which you have no control in the present. In order to master mindfulness, you need to practice the principle of acceptance, as accepting life for what it is in the present, whether good or bad, helps you to slow down and start focussing on the positive around you - no matter how stressful or negative a situation could become. 

Mindfulness has helped me a lot, especially during my angry and frustrated season when CRPS was at its worst. It helped me to slow down, to take my focus away from my hand and my pain for the moment, to work towards acceptance and forgiveness and to stop judging myself. It helped me, and still helps me, to just be in the moment, to live one day, one moment, one breath at a time. It helped me to become more aware of myself - not only of Chucky at the time - but also the rest of me. 

This then is the 1st skill of DBT. You don't need to have an illness or disability for it to mean something to you. We all need to practise this from time to time. It is a time to be bare honest and non-judgemental with yourself and to become aware of your being in the here and now.

For those that want to try this, you can follow the link below. Next time we will be looking at the second step/core skill of DBT - Distress tolerance.

 https://youtu.be/WUASVHlfXeI

 

Update on my health

So I was supposed to go for the 2nd rhizotomy on 15 March, but landed myself in hospital on the 14th due to unrelated issues. The previous chapter was written from my hospital bed. I was admitted with cellulitis in both legs. The doctors still have no idea how I contracted it as there were no bite marks, scrapes or lesions. Also the fact that I contracted it in both legs were perplexing to say the least. Fortunately, they found no traces in my blood, or in my bones or the membrane around the bones. But it still meant 4 days in hospital and a week and a half on bedrest with some heavy medications. Initially I thought that it may be an allergic reaction to some new meds that I was trying, but then when my legs started to flame up and swell, and became painful it almost felt like CRPS spreading to my legs. Fortunately, this was not the case, but it sure felt the same in many respects. 

The worst, however, is over. The inflammation and pain is largely gone. My legs still swell a bit when I were too active during the day, so at night I have to elevate it. On my birthday my wife and kids took me out for a picnic at the dam, and we took a stroll around the dam, which aggravated my legs quite a bit, but I am pacing myself.

But what was Buddy's take on what was happening. Before I was admitted to hospital, the doctor put me on a drip in her consulting room and administrated antibiotics and strong pain meds through the drip. Fortunately, she knew what CRPS is, and I also had my medical bracelet on, so she used my left arm instead. It burned like hell and I could just imagine how my right hand would have reacted if the drip was on the right. I had to constantly tell Buddy that this is not about him and that he needed to relax, even in hospital. He was like one of those small dogs that displays territorial aggression whenever someone enter its space. He would start to growl whenever the nurses would come close to change the drip, or take my blood pressure etc. What was refreshing, was that some of the nurses knew what CRPS is, so they knew not to bother Buddy. But yes, time and again I had to tell Buddy to sit and stay and stop barking. Besides that, he behaved himself better than I would expect.

I saw the surgeon again on the 5th of April and he was very satisfied with my legs' healing process. It can still swell up for up to 6 weeks, but I just need to be careful. Due to me being hospitalized, the rhizotomy was moved to the 12th of April, but it has been postponed again (now for the 5th time) to 19 April 2023. So hopefully it will not be postponed again.

Regarding the Cymgen, I started reducing on the 16th of March to half the doses per day. It was the same period of time that I have been on strong pain meds and antibiotics in hospital, as well as the recovery time afterwards. With the pain in my legs and the drips and lots of extra medication, I did not focus on any side effects from reducing the Cymgen - not to say that it was not there, my focus was just on the cellulitis. However, I stopped with the extra meds on the 31st of March. On the 1st of April I became irritated, the Sunday still so, and then I started to become very anxious - 24/7 - with sweaty palms, heart racing in my throat and feeling jittery all the time. It felt like withdrawal. I had a consultation with my doctor, and she said that she thinks it is my body that became used to the Cymgen and is now craving the anti-depression part of the medication. She does not think it is withdrawal though, but in my mind, if my body is craving some chemical that has been reduced, isn't that what withdrawal is though? Anyway, so she took me off Cymgen with immediate effect and placed me on Serta as replacement to counter the anti-depression part of the medication, which will take about 2 weeks to kick in, as well as an Urbanol to use in the meantime. 

Interesting though, is that I have not been anxious or depressed before I went on Cymgen. Cymgen was prescribed as it is the best medication to deal with the pain. The anti-depression part came in as this medication is also prescribed for depression - so it was an added effect to what I needed at the time. Now that I have been on it for a while, it seems that my brain has gotten used to the effect of the anti-depression part, that it did not need, but now craved. It is a fact that our bodies and our minds change as we grow older, but it also goes to show how, what we put into our bodies, can change our whole blueprint, and suddenly that which never used to be an issue before, now seems to be integrated into our being.

I am still continuing with the Epleptin for pain management, which she also wants to push up to at least double the doses. Apparently I can go up to 1800mg per day (600mg three times a day). So we will see how it goes. Will keep you updated.