It’s May, so that means three things: 1) God must have his Almighty Thumb pressed down firmly on the fast-forward button of life ’cause this year is flying by, 2) In less than three weeks I’ll be relaxing on a beach with some sort of coconut and pineapple concoction in Hawaii, and 3) it’s Myositis Awareness Month! Those of you who’ve been rocking with me for a minute now have heard me share my testimony (on several occasions) about my experience with autoimmune disease. And to all my new folk out there (welcome!), let me fill you in real quick.
So to make a long story hella short, I got really sick my last semester of college and had to come home immediately after I graduated to figure out what the heck was going on. A month of doctor visits and lab tests later, I was finally diagnosed with dermatomyositis (DM), a rare autoimmune disease characterized by severe skin and muscle inflammation. Just to give y’all an idea of how severe it was, the normal range for our muscle enzyme levels (or CPK levels) is anything below 170. When I was first diagnosed, my CPK levels were at an 1800. I know, cray.
But what’s crazier is the fact that I’ve met other myositis patients with CPK levels waaaaay higher than that. I was just talking to someone the other day who told me her levels were a 15,000 when she was first diagnosed. FIFTEEN THOUSAND. I’ma remind y’all again that the normal range is below 170. So let me just say that I have absolutely no clue how anyone could experience astronomically high levels like that and still be walking this earth. ‘Cause my lil 1800 had me out of commission. I mean I couldn’t get out of the bed, take a shower, get dressed, lift my arms to do my hair, get up from sitting down, walk up and down the stairs, or even walk next door without assistance because I was too weak to do any of it on my own.
While I give all glory to God for bringing me through that season of my life, I will never stop sharing what I went through to spread more awareness because there are so many people out here suffering from this disease and similar conditions. And the worst part is the fact that there aren’t enough rheumatologists (doctors who specialize in the treatment of musculoskeletal and systemic autoimmune diseases) practicing to properly diagnose and treat patients who have these type of conditions.
When I tell y’all how long these waiting lists are just to book an appointment with a rheumatologist, it’s ridiculous. Someone from the myositis support group I’m in said that they won’t be able to get an appointment until the end of the year. THE END OF THE YEAR, Y’ALL. Mind you, this disease totally freaking sucks (see above). So to be told that it will be months on end before you can even see the one doctor who will be able to properly treat you is pretty darn discouraging. The same exact thing happened to me. Before I was diagnosed, I was wait-listed to see a rheumatologist months down the road and with each passing day, my condition got progressively worse. Until one day my mom said screw this and took me to emergency. I stayed in the hospital for three days and was finally able to get all the lab work and procedures I needed done to determine a diagnosis and start treatment.
So yeah. We need more rheumatologists out here in these streets because the ratio of autoimmune disease patients to doctors who can properly diagnose and treat them is too damn high. We also need more primary care doctors who are knowledgeable enough about myositis and other systemic autoimmune diseases (like rheumatoid arthritis, fibromyalgia, lupus, Celiac Disease, Crohn’s Disease, etc.) to refer their patients to a rheumatologist. The same lady with DM who had the 15,000 CPK levels just told me that her doctor didn’t think she needed to go to a rheumatologist because she didn’t have joint pain. HUH???
So to all my med school friends out there, I encourage y’all to look into practicing rheumatology because it is definitely, definitely needed. Or at least study up on the signs and symptoms so you know where to refer a patient of yours who may need to see a rheumatologist.
And to everyone else, do your own research to educate yourselves on these types of conditions because they are very real.