Yesterday was a big day. I got diagnosed with Addison’s
disease – a life-threatening condition. I have an array of feelings about my
diagnosis including relief, victory, and hope. I’m not going to lie, I do have
a dash of self-pity thrown in there, but it only creeps up once in a while. It’s
been a long battle to get to this day. One filled with countless visits to the
emergency room, getting brushed off by doctors, and skeptical friends who have said,
“You don’t look sick”. It’s been exhausting
and frustrating, but I kept at it. I believe that, when it comes to my health,
I am my own best advocate. If I get a door slammed in my face, I just go knock
on another one. I keep going until I get an answer. Yesterday, I finally got an
answer.
Throughout this ordeal, my partner has been my rock. She has
believed me. She has supported me. She understands me. She knows I don’t feel
good even before I do. She’s been my cheerleader, my caretaker, and my
motivation to keep fighting. She’s had my back. She has taken me to the ER. She
has talked to the doctors. She has remembered to tell them the things that I
don’t necessarily forget, but symptoms that have become such a part of MY “normal” that I didn’t realize that
everyone else doesn’t experience these things on a regular basis. I have been sick
and increasingly getting worse, for so long that I don’t even remember what it
feels like to be well. She has made certain that I have done what I need to do
to feel better. Even when she’s been tired and stressed out, she has still
taken care of me. I am blessed.
Another person who has been invaluable through all of this
is my manager. Working in a restaurant, it is common practice and company
policy to find someone to cover a scheduled shift if you cannot. Unfortunately,
Addison’s disease rears its ugly head without notice. My manger has never been
anything but accommodating and sympathetic. If I am having a “bad day” as I
call them, all I’ve had to do is text him and tell him I’m sick. He has worked
it out, been short-handed, or covered my shift himself every time. Mornings are
often the worst time of day for me. Visiting the bathroom with nausea and upset
stomach takes time. Getting ready in the mornings takes twice as long as it
used to and, it seems, no matter how early I wake up, I can’t seem to get out
of the house on time. I went from being a dependable employee, always 15
minutes early for my shift, to one who can’t remember the last time I actually
arrived at work at my scheduled time. My manger has been completely supportive
with his sense of humor and I have joked with him that my schedule should say “ish”
after the time. I am truly grateful that he is my manager and I know, without a
doubt, that if I worked for anyone else I would have been fired long ago. I am
one lucky girl.
I have been fortunate to have a few people in my life who
have not given up on me. They have encouraged me to keep fighting. Two years
ago, a doctor told me that I probably have an autoimmune disease. He also said
that testing to figure out precisely which autoimmune disease I have would take
at least a year, would be expensive, and, without insurance, would be
especially expensive. Even through the “bad days”, I have persisted. I have
read and researched my unique combination of symptoms and brought that
information to my doctors and loved ones. I searched for doctors who would work
with me, an uninsured, low-income patient. I’ve been through a lot of doctors,
but one of them finally sat down, looked in my eyes, listened, and wrote down
everything I told him. He was humble enough to admit, “I don’t know, but give
me a few minutes to do some research”. He did his research and returned to tell
me that I have Addison’s disease. He wrote me a stack of prescriptions and then
ordered lab work. He called me today (a day earlier than he said he would) with
the results. He asked me how I am doing. He told me to keep checking in and
keep him posted on how I’m doing. He
changed my mind about doctors.
Finally having a name for why I am sick is so incredibly
relieving. Having the proper medication gives me hope. The past few years have
been a chapter in my life that has been full of “bad days”, stress, and
unimaginable fear. My focus has been on advocating for my own well-being and
health. Getting a diagnosis is truly a victory. Now that my health is going to
improve, I can get back to the things that make life worth living.
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