Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Battling For Care
One of the hardest things about life with chronic conditions is it feels like I am constantly battling medical professionals to get the outcome I want. I know some of those battles are a result of nothing more than my stubborn belief that nature should always get a shot at fixing the issue first, not a popular opinion among medical professionals. It causes them to see me in a certain light. I’m one of those fruity people who use ginger and peppermint to cure a variety of symptoms, add to that the fact that I am 100% upfront about my use of marijuana to manage my pain, and, well, they think I’m some sort of tree-hugging nutjob. (To be fair, I do hug more trees than the average adult.)
Few doctors (two so far) understand the science behind the remedies I use, fewer still suspect I might. If I’m using it, you can bet I’ve looked into how it works and why it works, that’s just who I am. I need to know the why. Really, I think that’s the biggest reason my doctors and I butt heads, because they don’t often seem to care about the why, they are focused on the byproduct, I am looking for the source. Nowhere in medicine is the source more unknown than autoimmune disease. Scientists simply do not know why 80+ autoimmune diseases exist. They don’t know why they crop up, what drives them, or how to stop them. For most of those diseases, they have a handful of medications they use by trial and error until they land on one that helps the patient and is tolerated by them. Medications for disease management. It seems cures are few and far between in the modern age.
Really, that is the root of most battles between my medical team and I. They are interested in treating symptoms, I am interested in root causes and how they can be stopped. If not for that, I honesty don’t know how much longer diagnosis of RA may have taken. I spent years in the symptom treatment loop before finally getting the proper testing to find the root of my discomfort. Years of pain and inflammation as my body quietly destroyed itself. Years of damage that, you guessed it, I’ve since been battling to get fixed, because, even once the ultimate cause of an issue is known, the standard plan of care for most chronic illnesses is wait and see, apply meds, and the occasional bandage if something really dangerous crops up, but overall, just live with this. Mange the disease, watch it do what it does, keep taking those meds and be glad its not worse.
Well, that doesn’t work for me. I know too much about the wonders we can do to be satisfied with just watching my body break down while others get new limbs. If a car accident victim can have a new hip, then dammit so can I. Just because my disease is doing exactly what it is known to do does not mean we can’t call in a repair crew to counter that. Once joints are destroyed by rheumatoid arthritis it really makes no difference how much you treat the original underlying cause, the RA, the damage is done. The new root of that pain is the damage. No amount of controlling RA will stop that pain or increase the ability of that joint to function.
In a world where all we had was medicine, we’d be stuck with that damage forever. Luckily we live in a world filled with miraculous technologies and doctors who can reconstruct a surprising number of human parts. A world filled with orthopedics, physical therapists, and others who can help a body regain mobility stolen by chronic disease. Professionals who, in combination with your rheumatologist can help improve the quality of your life. Professionals they will not likely refer you to unless you ask. So, assemble that team, add more experts, get the preventative and reconstructive crew members on your team. Don’t ever let them tell you that’s just RA, you have to live with it. It might be RA, but you don’t have to accept everything it hands out. You can fight back, you can work to prevent immobility, you can get new parts to keep moving.
How have you fought for your health and mobility? Share your battle stories. If you would like to read the story of my battle for a hip and the beautiful outcome of that fight, check out Celebrating Mobility.
Tenacious ME 