First of all let me be clear – my
diagnosis was 'suspected Lupus'. I also have the beginning of
Rheumatoid Arthritis. A mini-stroke last year ended up with a
semi-confirmation of the Lupus with an abnormal ANA. So I can't tell
anyone what it is like living with the numerous doctor appointments
as I haven't been able to locate a rheumatologist in my new county.
I'm sure there is one here and tomorrow morning I have a call
scheduled with my insurance company to help locate one.
Lupus is a chronic illness that causes
the body's immune system to attack the host – that's you or me.
Some common symptoms are a butterfly shaped rash on the face (absent
in many cases including mine), severe fatigue, joint pain, memory
problems (called Lupus fog), and a general feeling of unease
(malaise). When I have a fever or drink alcohol the rash or redness shows up on my face.
Because the symptoms are so general,
Lupus can be confused with other illness. It takes many tests to come
to a concrete diagnosis for some women. For others it is so obvious
their doctors only need confirmation. I'm one of the lucky ones.
For over a year I had been having
trouble with the joints in my hand.
I assumed it was RA, like my mom
had. Many of RA's symptoms are the same as Lupus. One day I found
that I could barely move. I had no energy. Trying to type was
ridiculously tiring. Come on, I could barely lift my fingers – what
was my body doing?
I went to the emergency room because
that type of low energy was not normal. No way. I have 6 children, 5
of them are under 12. My youngest was not even a year old at that
time. I talked to the doctor on schedule, explained all of the weird
symptoms I had in the recent months. She asked - “Did your mother
or other immediate female relatives ever have a diagnosis of Lupus?”
Uh...not that I knew of. A few hours
later I left the ER with a prescription for 800 mg ibuprofen (for my
joints) and orders to find a rhuematologist. I never did find one, we
moved not long after that. No insurance then, either. I called my grandmother and she told me about several women in our family with it. My aunt on my bio-father's side of the family said Lupus runs in that side, too.
Now I have insurance, so tomorrow's
call is important. Up until now I've been dealing with this illness
in the only way I could – alternative medicine. Herbs, vitamins,
and my own high tolerance for pain. No matter how much tolerance you
have nothing can stop this disease from breaking you down. I like to
joke about how nothing can kick my ass except me, but I'm at the
point where I need to throw in the towel.
I need a doctor.
I know this. There's
no solid documentation of how long you can live with untreated Lupus
that I know of. Each flare – periods of time when the body is busy
attacking itself – is breaks me further.
My husband helps around the house. In
fact, for the past week he's done most of everything. I feel guilty
even though he tells me not to. Who wouldn't? Even though it is hard
to explain to people just how tired you are after doing, well,
nothing. Dragging your butt out of bed is like climbing a cliff
freestyle.
So, what IS it like?
How can I describe
the feeling to someone that doesn't have it and is trying to
understand how a friend with this stupid disease feels? I don't like
the 'Spoon Theory', though it's sort of right.
Imagine waking up in the morning with
your bed at the bottom of a mountain. You must climb out of bed and a
¼ of the way up that hillside before taking care of your morning
routine. The entire time you must wear gloves filled with studs that
poke your knuckles.
Before you can have lunch you must
climb another ¼. If you're in a full blown flare you might just
forget to eat. You may decide to skip the meal because nothing tastes
good, your stomach hurts, or there is a nasty metallic taste in your
mouth again.
Dinner? Maybe. You're halfway up the
mountain already. If you happen to remember to get dinner started
it's going to take another ¼ of that climb to get dinner made.
Bedtime – ¾ of the way up the
mountain you realize you just don't have the equipment to finish the
climb. Time to make camp (in other words, fall into bed and try not
to cry yourself to sleep).
Those of us with children find that our
climbs are even steeper. We never get to climb ¼ of the way at a
time. We must climb a meandering spiral path. Sometimes we end up
staring at the start of the path, wondering what happened to the day.
I haven't even touched the tip of the
symptom/fare iceberg. Each of us have different symptoms and
reactions. Our bodies do some seriously weird shit.
I can tell you that most Lupus
sufferers don't want your pity.
They just want you to understand that
sometimes it really is hard to get things done. Moving across the
room can be like running a marathon through molasses. We get weird
aches and pains. Sometimes we shake when we walk or we might need an
arm to hold on to. We don't want to use a cane, but we might need it.
Don't get upset if your friend with
Lupus can't go to the mall or needs to rest a lot when you do go out.
We don't want this. Most of us would give anything to go back to how
we were. On our good days many of us try to make up for the ones we
'lost' during a flare. Do us a favor and don't insist on helping us
over-extend our bodies...we're pretty good at that already.
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