A lot of young people with chronic illness, like me, have at some point in their life been
given a lame diagnosis such as “growing pains” when in reality there was something
much more significant in play. When you’re young it’s very easy for a doctor to throw
around minor diagnoses and acute relief strategies for what you may now know is a
chronic condition. The first full sentence I ever spoke was “mommy my knees hurt”. My
mother being a nurse, was obviously concerned about my continuous pain. It took her
over a year to find a doctor who would look deep enough into my condition to diagnose
me with anything other than growing pains. That diagnosis by the way was rheumatoid
arthritis. I also know that I was one of the lucky ones who had a mother who knew her
stuff and wouldn’t give up until she found a doctor who would listen. One year is
actually relatively short for a chronic condition diagnosis.
After my initial diagnosis, I was put on every RA medicine under the sun ranging from
baby Tylenol (useless) to methotrexate and Humira. By the time I started Humira I was
just starting kindergarten, and if you know anything about being immunocompromised
you would know that being in a room surrounded by snotty little five and six-year-olds
is the last place you’d want to be. I was sick with strep constantly, and I ended up
missing at least a third of school that year. Then BAM, Halleluiah, I got my tonsils and
adenoids out and I was cured? Okay, maybe not cured but my life was significantly
better. I started to only have flare-ups when I was sick with something and I was able
to ditch the Humira.
When I turned twelve, I got mono, which caused a flare-up so bad that my parents
rushed me to the ER to get checked out, where they promptly diagnosed me with a
“panic attack” and sent us on our way completely ignoring my 102 fever. Thanks a lot
for that. They only know I had mono because eventually, I had to go in to see another
more competent doctor who ran some blood tests. Enter next diagnosis caused by
mono………POTS! My POTS diagnosis wasn’t such a big deal because I did have dizzy
spells, but I didn’t full out faint, so I mostly just deal with that by drinking a crap ton of
water.
About 2 years ago my family had to up and move to PA because of my dad’s job which
meant finding all new doctors. At this point, my arthritis had been in remission for
almost seven years which meant to every doctor around I was “cured”. Or not……….
After the move, I started dealing with joint pain again witch I at first attributed to the
drastic weather difference. Nope, it just kept getting worse until one day when my
parents were out of town I woke up with a locked jaw. Needless to say, I panicked. Do
you know what they do at a hospital when you come in with a locked jaw? They have
to manually readjust it. The thought alone always makes me shudder. Luckily, I was
able to un-stuck my jaw using a combination of ice and heat packs. I decided enough
was enough, it was almost Christmas and we were planning on going home to see
family and I didn’t want to be miserable. My mom booked an appointment with a
rheumatologist in our network just before the trip. Like literally a few hours before we
got on the plane. I’m excited and nervous to see a doctor about this because I really
needed the pain relief. When we get there, he takes a quick look at me and decides I
am in fact fine and sends us on our way without so much as a prescription for Aleve.
We were dumbfounded, how could that be right? It was exactly like before when I had
been diagnosed the first time.
Six months later I’m still in extreme pain, especially when opening and closing my
mouth and I wake up with a frozen jaw every day. What does the rheumy say you ask?
“You must be grinding your teeth, get a night guard.” So, I do, and I wear it religiously
even during the day when the pain still hasn’t gotten any better. One year after the
original rheumy appointment I have a follow up with him to check my “progress”. When
I can’t open my mouth hardly at all he decides maybe an MRI is in order. What does
this MRI show? Oh, you know, damage to my TMJ joint due to long term inflammation
caused by none other than ARTHRITIS. Guess who’s back on Humira, during a
pandemic no less.
In summary, if you know something is wrong with your body, listen to it. Fight for
yourself even when the doctor doesn’t want to listen or you're tired or scared.
Remember that chronic conditions left untreated can lead to serious consequences. If
your doctor won’t run any diagnostic tests tell them, you want it noted in your chart
that THEY have chosen not to run these tests. I just wanted to share my own story in
hopes that it can help someone in the future to feel heard and understood, to know
that you’re not alone in your struggle.
