I am so terribly sorry that I haven't posted in over a month. I've been having a pretty tough time since May. I promise to post some more evidence-based posts soon, but I thought I'd quickly catch you up with what has been happening.
Since the last post, my arthritis spread like wildfire. It's a type of arthritis known as flitting migratory arthritis. What this means is that this particular arthritis comes and goes and jumps around the body. It's affected every joint in my body - feet, ankles, knees, hips, spine, shoulders, elbows, wrists, hands, and even my jaw! I'm going to be honest, even as a doctor, I have found these symptoms very weird and I have spent hours researching them to gain a better understanding of what is going on. The fatigue and malaise I've experienced have been horrific as well, and I've been suffering from monster migraines too.
My Integrative specialist insisted that I head down to Cape Town for some treatments. So I jumped on a plane very last minute and headed down. While in Cape Town, I visited the Malachite Centre every day for 3 days. The Malachite Centre is Dr. Laporta's practice - an integrative centre that combines conventional and complementary medicines. The centre mostly focuses on the treatment and management of Cancer, however, they also treat and manage a host of other conditions, including autoimmunity. Over the 3 days, I received 6 intravenous infusions, or drips, 2 each day. The infusions were Curcumin (turmeric oil) and a mixture of Boswellia (Indian Frankincense) and Ashwagandha. These are all natural medicines that offer many benefits including; reduction of inflammation, increased energy, decreased stress and depression, anti-cancer properties and reduction in pain. Before each infusion, the doctor who works with Dr. Laporta did a pulse analysis on me - this is a practice that originates from Chinese medicine that works with the 26 basic pulses, each one providing the practitioner with information about what is going on in the body. Through these pulses, different diseases, organ dysfunction, abnormal energy states and imbalances can be detected. Although I have never trained in pulse analysis, it is something I find fascinating. I had previously witnessed Dr. Laporta and his partner practicing pulse analysis with other patients and they were always spot on with it.
During the infusions I felt very tired and drained, the fatigue lasted about 2-3 hours after each infusion. Dr. Laporta explained that it was my body's way of preserving energy and allowing the medicine to work. On the last day, the infusion was given along with intravenous blue light. The blue light helps to activate the Curcumin and makes it more potent. During this infusion, Dr. Laporta also provided some crystal healing and an auric cleansing.
The infusions helped replenish my energy stores and shifted the brain fog I was experiencing. I returned home feeling better equip to keep fighting. Unfortunately, the arthritis hadn’t shifted at all and continued to progress from my lower limbs into my shoulders, elbows, wrists, hand, and jaw. With this progression, I went back to my Prof and had multiple steroid injections into my joints. They seemed to help but only minimally. I began feeling completely drained and down in the dumps. Mentally I was trying to stay strong and positive, meditating, trying to pretend that I was okay, imagining that the disease was gone. However, my body was not playing the part and I kept getting weaker and experiencing more and more pain.
During this time Prof started me on Plasmaquine - a medication containing Chloroquine. This is a medication that was originally used for the prevention and treatment of Malaria. However, it was noted that during the 2nd world war, the soldiers that were given this medication as malaria prophylaxis, who were also suffering from Rheumatoid arthritis, experienced great improvement in their painful joints and other symptoms. Trials were then conducted and the immuno-modulatory effects of Chloroquine were discovered. As a result, the drug was approved for Rheumatological diseases or Autoimmune diseases. In my case, this medication has been used to prevent any organ damage from the disease and to try and improve the joint disease.
But alas, the joint involvement continued to worsen. I started to understand that it was the tendons and ligaments in the joints that were the most affected. Getting out of the car, standing up, climbing stairs, bending down, even chewing became painful and I had become a walking rice crispy - snap, crackle and pop! Eventually, Prof and I decided that enough was enough and I was re-admitted. During this admission, I was giving more intra-articular injections (injections into the joints) and I was sent for a Technetium bone scan. This scan looks for inflammation or disease in the skeletal system. Radioactive isotopes are injected into the bloodstream and a series of images are taken by a machine that looks similar to a CT scan machine. These initial images look at the vasculature, or blood supply, to the bones. A minimum of 2 hours is allowed for the radioactive isotopes to be absorbed by the bones and then more images are taken to look for disease in the skeletal system.The scan was positive for enthesitis or inflammation of the tendons and ligaments in multiple joints.
Prof and I sat and discussed my options. I explained my hesitancy surrounding methotrexate and why I had wanted to try and manage my disease naturally. He applauded my tenacity and commitment, he even went as far as saying that he believes if I hadn't chosen the exceptionally demanding and taxing career of being a doctor, I could probably continue to manage my disease naturally, with mindful practice, the AIP diet and the medications I was on. The problematic factor here is that the above option is not viable for me and my line of work. If I want to get back to work, to continue making my dreams come true, then we need to get this disease under control and fast. So after painful and thorough deliberation and research, I decided to bite the bullet and start the methotrexate. Methotrexate is a chemotherapeutic drug. It is used in certain cancers and it is used as a Disease Modifying Anti-rheumatic Drugs (DMARDS) for autoimmune diseases.
For autoimmune diseases, methotrexate is used at a low dose, much lower than with cancer. How on earth does that help?? Well what it does is it down regulates the immune system, ie it dampens/ reduces, and can eve switch off, the immune response. Thus, it prevents ones immune system from attacking ones self. I started last week and so far so good in terms of side effects. It comes with some pretty nasty side effects, which are entirely patient dependent. These include; nausea, vomiting, diarrhoea, stomach discomfort, mouth ulcers, hair thinning/hair loss, skin rashes, ulcers in the bowel, bleeding/easy bruising, liver and kidney toxicity and in the long term it has been linked to leukaemias and lymphomas. As I said, it depends on how the individual patient responds to the medication and the lower the dose, the lower the risks. Some patients don't experience any side effects, while some patients don't tolerate the medication at all. I had some nausea the day after taking it and I've been experiencing some malaise and fatigue, but it's difficult to say if it’s from the disease or the methotrexate. I'm keeping a symptom journal to keep track of whether the symptoms are improving or not.
While I am sad that I can no longer maintain control of the GPA naturally, and I initially felt that I had been defeated and failed, I have realised that it is absolutely essential to understand that in life, there is always a need for balance. This is a vital lesson for me, not only in a personal capacity but a professional one too. Knowing where to draw the line and listening to what your body needs is important. The integration of the natural world and the pharmaceutical world, and finding the balance between the two is key. It is a path that I need to walk for myself, as well as for my future patients, to gain full understanding and to be able to implement in my personal and professional life.
Even after all that has happened, when reading other Autoimmune fighter's stories, I would convince myself that I wouldn't be affected like they were and that I'd go back to how I use to be. While I still hold onto the hope that I will get better and regain strength to do the things that I love (or just anything really;)!) I have come to understand and accept that I may never get back to my "normal" state. This hit me like a tonne of bricks this last weekend and it took quite a while to process.
There's an explanation called the spoon theory, the basis of it is to describe what it's like to live with a chronic illness. Every day we are given spoons - a healthy person has an unlimited supply, while a chronically ill person has a very limited supply. Every task done throughout the day uses up a certain amount of spoons, taking a shower, cooking a meal, getting dressed, etc., they all consume spoons. As a "Spoonie" or chronic illness fighter, the spoons run out exceptionally fast, and while you can borrow spoons from tomorrow, it means tomorrow you will struggle even more. I tried to convince myself that this would not be me and that I could push through and convince myself that I was completely fine, I tried my utmost best.
However, the past few weeks have proven to me that this spoonie theory is pretty accurate and that I really have to be mindful of the things I do now or else I run out of spoons extremely fast. I know I'm still in a flare, I have been more than 2 months now, and things will get easier and I will become stronger, but I now also know that I need to be kind to myself and mindful of how I use my energy.
In all honesty, minus the pain, fatigue and feeling pretty terrible most of the time, the perspective on life I've gained and the values I have started to apply are priceless. Despite the struggles, I'm tremendously grateful to have turned my life around in such a positive way.
To truly appreciate the beauty of the light, you have to embrace the darkness too.
Stay strong, stay positive and embrace the challenges, I promise the growth will be worth it.
Sending love, Cayla