Welcome
back! If you missed my first post, here
it is! These questions are based on a
/r/AMA (Reddit's “Ask
me Anything”) where I did one based on my experiences as a young
woman with an autoimmune disease. I got loads of good questions, and
I'm back to answer round #2 of three questions submitted by users. If
you have questions of your own that I haven't answered, shoot me an
email and I would be glad to add them to my next post! So, without
further ado...
“What is your
diet like?”
I don't abide by
one specific diet, but I do tend to avoid certain foods and eat more
of others.
A common side
effect of Lupus is
anemia,
which can be a cause for chronic fatigue. I feel less fatigued when I
am eating foods and taking vitamins that are helpful for anemics.
Vitamin
B12 plays a large part in my life. Taking a supplement each day
usually proves effective in dealing with the energy I would otherwise
lack. It's a common treatment for anemia, and it certainly helps me!
However, you can also get B12 from food, especially meat. This can be
difficult for some people, like vegetarians or, people like me, who
like meat but have trouble digesting it. So, supplements it is!
Eating healthy is
important when you have an autoimmune disease because the better you
treat your body, the easier it's going to be to maintain your
appetite, sleep patterns, exercise and day to day activities. Finding
a meal plan that works for you is a wise decision. (She says as she
desperately tries to hide her bag of hot Cheetoes.)
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| http://patientadvocates.com/sites/default/files/vitamin-b12-benefits1.jpg |
“[...Describe]
your journey from first having symptoms bad enough to see a doctor to
actually achieving a diagnosis to figuring out your current ways to
cope with [Lupus.]”
I can
trace my symptoms back to childhood, feeling overly fatigued and
dizzy for no reason. As a teen, I was diagnosed with anemia, and saw
a cardiologist about a tightness in my chest and shortness of breath
that they couldn't explain (which I would later come to find was a
common symptom of lupus.) My back pain started as a teen, but peaked
when I was about 18. That's also when the chronic fatigue began, and
I found out I had scoliosis.
I didn't understand
the necessity of having a PCP (primary care physician) for...well,
way too long. I'd go to walk-in clinics, believing that after a
course of Norco and some bed rest, it'd let up. Well, it didn't.
Eventually, it became infuriating, as the pain was so bad that I was
failing in college. I saw an FNP at my school, and he was the one who
ordered the Xrays and bloodwork that showed that I had scoliosis and
a positive ANA (and autoimmune disease.) But since he wasn't an
actual doctor, my Lupus wasn't properly put in writing.
My first PCP did
one series of tests himself and (mis)diagnosed me with Fibromyalgia.
It wasn't long before I left him for another PCP. I was with this one
for a couple years. He helped me with pain management, but he never
had enough time to sit and speak with me long enough to get a
diagnosis. He was so booked that I couldn't see him for 3-6 months at
a time, which is not ideal for someone needing monthly medical
attention.
When my PCP was
booked one day, I saw a different doctor who actually sat and talked
to me. She said that if I were her patient, she'd order buttloads of
tests and Xrays. She also agreed that my Fibro diagnosis was likely
false, and also leaned more toward accepting that it was an
autoimmune disease. She is helping to solidify my Lupus diagnosis
right now, as my new PCP. She is wonderful.
This
PCP is a Godsend. It took me up until I was 24 to get diagnosed. In
total, my search for answers went on for 6 years, and took 4 primary
care physicians, along with countless other medical staff.
“What is the most
significant way in which this disease has effected your life?”
Mostly it's the
pain. I wake up with it. I go to sleep with it. I run errands with
it. As I continue to perform tasks that I love and indulge in my
favorite hobbies, it's there, sometimes subtly and other times
threatening to take me out of the game for the day.
It took me way too
long to understand that the pain and fatigue wasn't normal. I've had
it since I was a kid. And as an adult, I feel resentful because of
the adults in my life being ignorant.
In 8th
grade, my scoliosis-check nurse couldn't tell if my spine was crooked
or if my pants (which lacked a button) were the issue. My foster
guardian yelled at me that night for having shitty pants (not that I
got to choose my clothes in foster care.) Being angry with me was,
evidently, more important than following up on a medical anomaly.
While I was still growing, I could have had a back brace. But my
scoliosis wasn't confirmed until I was an adult. I have much pain
because of it.
 |
| Actual X-ray of my crooked-ass spine and uneven (but still luscious!) hips. |
When I went back to
live with my mother, I started getting sick. Here and there, at odd
times. She blamed it on stress and didn't think anything of it, but I
finally got her to take me to the doctors. I saw two
pediatricians. I came up positive for anemia, but my doctors
continued to refer me to counselors for stress. I was having
tightness in my chest (common with Lupus) and was referred to a
cardiologist. The EKG caught some irregularities, but the doctors
wouldn't accept them, as they were printed too dark. Instead of
getting new ones, the whole thing was dropped and once again I was
referred to counselors...and even God. God...was my doctor's
answer.
In short, I resent
that all of this happened. Nobody took me seriously, and if any of
these symptoms had been caught earlier, I could have had a much
different outcome. I try my best not to dwell on it and I appreciate
future goals more than I do hovering over past mistakes. But it still
hurts, and it still effects me.
~
Thanks for reading!
Sorry this one was so depressing there at the end. Sometimes, these
aren't easy questions, but they're still totally relevant. I just
hope that chronic illness awareness, especially in
youths, spreads from doctors to parents to peers, because young kids
do get sick and if
it's caught early, it can really make a difference!
See
you next time!
For
questions, comments, concerns or kittens, shoot me an email. Also, if
you have questions of your own about my health, I would be glad to
further my AMA and post them!
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BONUS XRAY!
An X-ray taken when I had a septum ring! |
