May is Lupus Awareness Month, along with Lyme Disease Awareness Month. You may have heard about lupus for the first time as a pre-existing condition in the current healthcare debate. Lupus is relatively rare, at about 150 cases per 100,000 people. But it, along with many other autoimmune diseases, is on the rise. Symptoms can leave you feeling like you're coming down with the flu, with joint pain, fevers, unbelievable fatigue, brain fog, unexplained hair loss, and more. It can affect any organ system in the body, and on average, takes about 8 years to get a definitive diagnosis.
Many of you know already that I have lupus, and I have a daughter with another autoimmune disease, Sjogren's. I am very familiar with autoimmune disorders, as a physician, a patient, and as a support person. Because it's a relatively rare disease, I don't want to go too far in depth, but give you some information everyone can use.
If you feel like something is not right, keep advocating for yourself. In my own experience, it took years to get a diagnosis. I was repeatedly misdiagnosed with everything from laziness, thyroid disease that somehow didn't need to be treated, iron deficiency anemia, and depression. I followed every instruction from my various providers. I worked out harder, which just left me sicker. Iron IV's failed. (If someone ever says you have anemia, make sure they find out why!) When it was suggested that it was depression, I had just married my wonderful husband and come back from a fabulous honeymoon in Hawaii where I slept at least 14 hours a day. I finally asked for an auto-immune panel.
I ultimately diagnosed myself. I was lucky that I knew what tests to ask for, and I was able to read those tests when they came back since it was a 3 month wait to see a rheumatologist. If you've ever been my patient, you know I'm passionate about advocating for you. My own experience is part of the reason why. I will always do my best to get to the bottom of things. So, if you feel like something's not right, be persistent!
Fortunately, you hopefully won't have to deal with an autoimmune disorder. However, I do want to talk about building a strong foundation, which is something everyone needs. If you're living with an autoimmune disorder, you quickly learn that you have very little wiggle room in self care. The rest of us may feel like we have more wiggle room, but if we take it for granted we can quickly run amok, jeopardizing our health in a myriad of ways.
I saw a 14 year old girl today who was lamenting that she used to be able to stay up all night and keep going without sleep the next day, but can't do that now, as if something is wrong with her. It's quite a task to keep children on track with turning off the electronics, going to bed at a reasonable hour, making sure they eat a reasonable breakfast and lunch, and generally learn how to meet their basic needs. And how many of us are guilty of making the same choices as adults?
If you find yourself experiencing any dis-ease, the very first step should be to get back into a good self care routine. This includes good sleep hygiene, going to bed at a set time and getting a good night's rest, eating a healthy breakfast, lunch and dinner, and doing the right kind of exercise for your body. If you're not sure about any of these things, or if they don't seem to be enough to get you back on track, then it's time to set up an appointment for further investigation.
Dr. Angela McKaye, DC, ND