Over the last few days, I have been struggling more and more. I've once again become a rice crispy, with my joints giving me absolute hell. My abdominal pain is back too, although it is slightly different this time. The fatigue has skyrocketed and I just feel so dead inside. This year has been difficult, I haven't really been able to recover fully since relapsing in May. Despite still being in a mild flare, I needed to escape for a bit. I joined my partner on a trip to Berlin. I've been pedantically careful about over-exerting myself for the last few months. I spend most of my time resting and trying to recover. I very rarely go out and if I do, I often can't stay put for too long. I began to feel like I was imprisoned and knew I needed to do something for myself, to make me feel alive again. Sometimes you just have to do something, even if it means there may be some consequences. So off I went, on an adventure, somewhat aware that it might make me flare.
When I returned from my trip, I had a consult with my rheumatologist. In this consultation, I tried to inform him that I could feel a more serious flare coming on. For the first time since I've been under his care, it felt like he just wasn't listening and that he didn't really care, almost as if he didn't believe me. Another issue I have faced is that my Integrative Specialist has also blanked me. Since my trip to Cape Town to see him, I haven't been able to get a Skype or telephone consultation with him; that was in June! Despite persistently trying to get an appointment, there has been no engagement, other than his assistant making many false promises. As a result, I have had to stop taking a bunch of the medications I was receiving from him, the natural phytochemical medications from Panaxea, which I was very happy on. I tried to order them myself, however, I am not a registered doctor with them and therefore, I cannot obtain them. I have received no advice on how to best manage the side effects of the methotrexate with natural remedies or with any other aspect of my disease, despite the continued messages asking for some help. I no longer have an integrative doctor overseeing my management and helping me with the holistic treatment I so vehemently desire. Back to my Rheumatologist: he finished the consultation and said, "all looks good, I'll see you in a month". All did not look good. I had told him that my right foot had swelled up like a balloon while I was away because I had extensor tendinitis over the arch of my foot. It was very painful and made it difficult for me to walk, but I obviously pushed through it and refused to let it ruin my trip. When I arrived home from the trip, my abdominal pain had started again, and that is what had prompted me to make an appointment with him. I also had a mouth ulcer and was feeling really flat.
Over this year, with the continued ups and downs, I have come to understand this illness and I now know which signs to look out for to predict a flare. All of the symptoms I mentioned above are those signs. Hence I made an urgent appointment with my doctor. His response was that my acute phase reactants weren't elevated and so the disease is not active enough. Acute phase reactants are inflammatory chemicals produced by the body, such as CRP, ESR, IL-6, to name a few. When these levels are raised in the blood, it indicates high levels of inflammation in the body. In one of my initial posts, I discussed my IL-6 level being extremely high and being able to bring it down substantially with only diet and natural meds. Since that point, my IL-6 has remained normal. I have not had a single acute-phase reactant raised over the last few months, and these months have been the most difficult, as I have been the most ill. However, now all of a sudden, they are the markers that matter? There are no words to describe how to let down and alone I feel. I know I'm in the middle of another flare and I don't have any doctors I believe in anymore to manage it. Maybe I caught my Rheumatologist on a bad day, doctors are only human and they also have bad days. So I haven't given up on him just yet. However, I have had to take my health into my own hands now. It is in these moments and phases that I am beyond grateful that I am a doctor and I am able to oversee my own health. Although I am still very junior and I am in no way specialised enough to take my health on alone, I at least have a fairly good idea of what is going on and what I need to do. As a result, I have been getting my blood done and following my own results; low and behold, my IL-6 is on the rise. It is still not above normal but it jumped from 0.9 to 5.8. I am currently waiting for my next set of blood results to come out. When they are out I will reach out to my Rheumatologist and hope he will come back on board. I know of so many other warriors who fight a continued uphill battle when it comes to doctors. I don't know why there is such a terrible stigma when it comes to autoimmune disease; that we must be making it up, or we just love to complain. Maybe it is the lack of understanding or adequate research into these diseases, maybe it's the lack of empathy and compassion towards patients. All I know is that it is unacceptable. Believe me, when I say, I do not enjoy being like this, it is not fun for me and it is in no way, shape or form something I'm concocting in my mind, I wouldn't be able to make this up, even if I tried.
I really don't know how anyone else does it. If these are the struggles I am facing as someone in the medical world, as "one of their own", I cannot fathom how other patients are treated. I honestly wouldn't be able to handle this disease if I wasn't a doctor and couldn't rely on myself to ensure my health is okay. It upsets me in so many ways. 99% of patients are completely reliant on their doctors. These people put all of their faith in their doctor's hands, they trust them with their lives and so often, they are disappointed.
The health system is so broken. Having to walk the path of a patient and a doctor has made this glaringly obvious to me. It genuinely makes me lose faith in the system, which is an incredibly scary thing. Maybe it's the fact that most of the doctors who treat you, have never been through what you have, they cannot fully comprehend it. They know what they have learned from a textbook, but people are not textbooks, bizarre things do happen, and we don't fit perfectly into the boxes they want us to fit into.
All I can say is that you can't fix something until you know it is broken. Living this experience has opened my eyes in the biggest way. I know that when I get back to doing what I love, I will do everything in my power to fix what is broken, to make a real difference. All hope is not lost, there really are true Angels out there in the form of doctors and healers, you just have to search extremely hard to find them!
I had a magical experience with a shadow worker/ shaman/ priestess this last weekend. I am still busy processing the journey, but I will be posting about it soon.
I know this fight is difficult and I know how often you want to throw in the towel, but keep fighting for yourself! Be the advocate for your own health and stop at nothing until you find a team that will advocate for you, just as hard as you do.
You've got this, keep going. I'm proud of you!
Cayla