I am a moderate and I'm lucky. I take
what medication I must for my lupus--and
not seriously potent medicine at
that--and do everything I can to take
care of myself.
I stay out of the sun completely,
because my lupus is made worse by sun.
In the summer I must stay cool because I
am heat sensitive also. I go into what
is known as a Flare if I get
foolish and get too hot or get more than
15 minutes--total in a day--of sun.
A flare is when I suddenly get
ill. It usually means I get hives,
fever, chills, abdominal pain, and
headache. Frequently there is increased
joint pain and general pain elsewhere.
I take medication for the hives and
bundle up in bed until the flare passes.
Sometimes it only lasts 30 minutes or
so; sometimes days/weeks. I never know
when a flare is coming. I can feel good
one minute and the next collapsed in bed
or be nearly fainting when I'm out
shopping. I have stopped making plans,
or qualify all of my "See you there"
statements with a "if I can." I really
hate this part of Lupus. It makes me
seem unreliable, when I am actually very
sick.
A person with lupus doesn't always show
their illness outwardly. They can look
perfecty healthy, but inside their
organs are being destroyed. The kidneys
are one of the most attacked organs in
lupus, though any organ can be a target.
A lupus sufferer may have
pericarditis--an inflamation involving
the heart. They can get pneumonia easily
because of lung problems. They often
suffer from various internal ulcers,
blockages, and vascular problems.
Because lupus attacks with stealth, it
is hard to diagnose. (It is called The
Great Mimic.) Then again, it can attack
with a vengeance and progress rapidly.
There is never anything sure about
lupus. There are blood tests that can
uncover it, but most victims go
undiagnosed for years. I went nearly my
entire young adult life with it before
it was uncovered. It finally got bad
enough and my skin started showing signs
of it, that it was suspected. The rest
is my present.
Believe it or not, I was happy learning
I had a real health problem. Being the
sneak that lupus is, I had been
suffering more and more as the years
progressed without being aware that I
was very sick.There was a pain here. A
joint was swollen. I had more
headaches. My stomach was often upset
and hurt. I couldn't sleep on my stomach
because of discomfort. I'd have spells
of unexplained fever. I got pneumonia
overnight--it nearly killed me.
I just thought I was getting old and
worn out. Over the last 5 years I got
more and more sick. My blood pressure
hit 240/160. That started me on blood
pressure medicine. (Very nearly gave my
doctor a heart attack.) Still no
diagnosis. I started reacting to the
sun. I just thought I wasn't adjusting
well to the extreme heat of Texas. I
always had an excuse for my
discomfort.
People around me started to wonder about
me. I was obviously ill, but I didn't
really see it. I blamed everything on
my blood pressure or my medicine.
Finally an acquaintance noticed the red
blotches on my skin and suggested I get
tested for lupus. I brushed it off.
When other people started suggesting it,
I got tested.
I feel much better now. I often feel
nearly normal,though I usually have a
low-grade fever. I am relieved that I
wasn't insane or something. I
am glad that now I can get treatment and
feel better. I just wish it hadn't
taken so many years! |
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It is late April of '98 and I'm feeling
bad. Going through light-headedness,
headache, severe weakness. Can't even do
anything with my hair. The depression
of lupus is makng an effort to descend,
but I'm battling it.
The Depression of lupus is a real
thing. It has nothing to do with
personal body perception or altered
lifestyle, in my case. The depression
seems to come from my brain, just out of
the blue. Yes, I get tired of feeling
bad. Yes, I am not happy that my
lifestyle has changed. Neither cause me
depression. I am luckier than most and
realize it. I have a supportive, caring
husband and I don't HAVE to do anything
if I don't want. (Which is most of the
time lately.) I sit here at the keyboard
and feel like I'm getting weaker.
'They' say get execise. HA! How?
Sometimes I am too exhausted to walk the
length of my home and it's small. I
can't go strolling outside because of UV
sensitivity. I can't go to the mall to
walk because I can't drive our manual
transmission car because my hands, knees
and elbows won't let me without PAIN.
Besides, the mall is usually too hot for
me and I get very sick if I so much as
walk in it too long. So easy for 'them'
to make suggestions, they are not in my
shoes.
That they aren't in my shoes is good. I
don't want anyone else to live this way,
not even to teach them how to see things
through my eyes. The other week a young
black woman was laughing at me for
having a towel up to block the sun while
my husband and I were going somewhere in
the car. (Not that cloth protects you
very well anyway. UV goes straight
through ordinary clothing--even jeans!)
She pointed me out to the others in the
car and they were laughing. I guess they
thought this white woman had so much
vanity that she wanted to protect her
pale skin.
They were probably in their early
twenties and so have little experience
in life. For a flash of a second I
wished them lupus, but withdrew it.
Yes, african americans--and
oriental--can get lupus--actually their
odds are better than other races. It is
a disease that doesn't discriminate over
your skin color or sex. Men get it,
too.
Surprised? Lupus is generally known as awoman's disease, but men suffer from it as well. If anything it is more difficult to uncover it in them because it is more rare in males and is unexpected. I can't imagine the nightmare THEY go through. A man with
what is generally thought to be a
woman's disease.
For men and women the finacial toll of
lupus is considerable. Not only can you
be too sick to work, but if you have a
jerk of an employer who only provides
the most basic of insurance, you are
paying for expensive tests and medicine
out of pocket. (Such employers do exist.
My husband is currently working for one
of them. I think there is a total of
$350.00 in benefits/year! I guess any
insurance meets the law.) A lupus
sufferer could usethat up in one
doctor's visit--and then some! Yes, we
could buy more insurance, but on the
paltry wages... (I am not being
dramatic. He is seeking other work. It
will probably mean he has to go out of
town, but you gotta do what you gotta
do.)
So, I don't have insurance. I know very
well what it takes to get by. I go to
the doctor only when I HAVE to, like to
get my blood pressure medicine
prescription refilled. I then hit him
up for anything else I need, like Lodine
or something to help me sleep or
something for hives. I beg for samples.
If I run out of the prescription
medicine and the doctor doesn't have
samples, too bad. I wait the six
months. I do not agree to tests. Too
expensive. I only go more often if I am
very ill. Then I have to buy only
the most important medicines first and
get the others as I can.
The point of this is to inform others
that just because health care is
available, it doesn't mean a sufferer
can afford to get what they need. They
may make just enugh not to qualify for
assistance, too. (Never mind most
insurance companies were cancelling the
insurance of sufferers. I understand a
law has been passed to stop this, but
we'll see how they get around it. After
all, insurance companies exist for
profit, not humanitarian
purposes.)
I've sounded off enough. I feel better.
Thanks for listening.
UPDATE--This seems as good a place as any to write about what has happened since I wrote all of this.
The year 2000 is here and I'm continuing to learn from the disease. I'm not feeling much better, but I've learned how to avoid most of the infections and pneumonia.
I'm not coping well right now with the emotional effects of the disease--the day in and day out pain, the emotional adjustments of a long term illness and its limitations. It doesn't help to have others constantly saying "You don't have lupus." Shoot, they act like they are the first people to say that--the world of the super-psychics--but, of course, they don't know what the problem IS. They just "know" it isn't lupus. At $10.00 a thoughtless comment, I'd be rich by now. (This is a warning to anyone who thinks their "insight" is original. :-) Its not. We've probably all heard it 10 times--at least. Try to come up with something new--if you feel you must.)
I'm trying to figure out why they say such nonsense. Why is MY disease a threat to them? Is it that they feel I'm getting "too much attention" and are jealous? Hey, I'd give them this disease if it would make them happy, then THAY can get whatever attention they feel I'm getting. (I wonder what attention they think I'm getting when everyone abandons you--for whatever reason.)
THEY can deal with having their life altered by something out of their control--no playing in the sun, no energy to do the things they want to do because they don't have energy enough to even get dressed sometimes. THEY can deal with the grinding, energy-sapping pain 24 hours a day. THEY can have it all. I DON'T WANT IT. If they do, they are welcome to it.
I just don't understand them yet. They always tell you that WE are responsible for our health--that we made the decision to be ill. Man, that's NUTS. Who would chose such a disease? Its isolating and lonely. (And when THEY get ill, well, I guess they figure that isn't THEIR fault. I don't wonder who the crazy one is. haha)
Its difficult enough to endure the disease without having fruitcakes come along and tell you things like that. Believe me, so far I've found no cure. Heck, I'd get the Nobel Prize if I did. I've tried every alternative--just about. I've worked on my mind set and every other alternative "treatment." I'm not giving up, but it seems these things are useless.
I've learned a lot from this disease--and now I'm learning that if there is any reason for my suffering, perhaps it is to be an example to others. I can show them how to live every day when every day brings pain. I can show them bravery in the face of suffering. Perhaps they can learn to be compassionate. Perhaps they can learn to stop judging what no one understands. Perhaps they can learn to be better people--less self-centered and more "other" oriented. Perhaps they can learn the meaning of life--and it sure isn't to hurt others. I'm sorry the teaching falls upon OUR shoulders, but someone has to do it, I guess. :-)
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