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More Poetry from ACES
We don't always have to be strong to be strong. Sometimes, our strength is
expressed in being vulnerable. Sometimes, we need to fall apart to regroup and
stay on track.
We all have days when we cannot push any harder, cannot hold back self-doubt,
cannot stop focusing on fear, cannot be strong.
There are days when we cannot focus on being responsible. Occasionally, we don't
want to get out of our pajamas. Sometimes, we cry in front of people. We expose
our tiredness, irritability, or anger.
Those days are okay. They are just okay.
Part of taking care of ourselves means we give ourselves permission to
"fall apart" when we need to. We do not have to be perpetual towers of
strength. We are strong. We have proven that. Our strength will continue if we
allow ourselves the courage to feel scared, weak, and vulnerable when we need to
experience those feelings.
Today, help me to know that it is okay to allow myself to be human. Help me not
to feel guilty or punish myself when I need to "fall apart.
I had known
If I had known about the future
I wouldn't have wasted the past
The things I could do back then
Would have been made to last.
If I had known about goodbye
I would have said more hellos.
The precious moments that we had
Were something that I'd have chose.
If I had known about the pain
I would have used my mind.
My eyes would have been opened
And I wouldn't have been so blind.
I still don't know about the future
But I will learn from my past.
The special moments that I find
Will now be made to last.
Each friend that comes my way
Will get a friendly hello.
And a smile will be passed
To those I do not know.
Those in pain I'll help comfort
When I see them every day
The pain I've had in the past
Will be a beacon in a way.
I don't know why things happen
But I am doing the best that I can
All of our joys and our trials
Are part of God's infinite plan.
WOULD IF I COULD"
There's a lot of things I could do,
at least according to you.
Where there's a will, there's a way,
and I won't plan a strenuous day.
I appreciate the offer,
but I'm afraid I'm going to pass.
Like the gauge that reads empty,
the car starts,but soon runs out of gas.
I know it's hard to understand,
but some things are beyond me today.
At times I hardly make a move,
and just barely get through the day.
Sometimes walking across the room,
is a mental and physical strain.
I know I would enjoy myself,
but I wouldn't enjoy the pain.
You think I'm being difficult.
Believe me, that isn't true.
You can't begin to imagine,
all the things I'd like to do.
Nobody willingly gives up,
all the pleasures of the past.
We fight to hold on to them,
wishing forever they would last.
My life now has limitations,
far more than you can see.
If My "No" disappoints you,
Imagine, how it's affecting me!
Very recently, I had another lupus
flare. The symptom this ime was depression--bone-deep, horrible, suicidal
depression. I've been depressed before for a day, two, but closer to
pre-occupied while I worked out a problem bothering me, but never depressed at
this level. I've been exhibiting steadily for a few years and I finally
got the message that I'm
swimming upstream with my painting and I'll have to keep plugging away all my
life and I probably won't get as far as I'd like. Where I am, and what
I'm doing, is what I wanted all my life so it's not as though I'm
broken-hearted, and there's the rub. Why would I be ready to throw in
the towel? I knew I was upset, but I knew this shattering depression
normal for me or the situation. I had already been reading Central
Nervous System Manifestations in Lupus by Dr. Lahita and I knew mild CNS Lupus
could cause all different kinds of symptoms including depression. So I
contacted my neurologist and my old therapist and asked their opinions and
advice. Neither thought it was related to the situation at hand and my
neurologist started me on relatively high doses of steroids and a higher dose
of an anti-anxiety medication I'd been taking for my lupus migraines. The
medications turned me back into myself and I'm grateful, but shaken.
I saw my rheumatologist yesterday who said he's never
seen a case like mine--all the CNS patients are either totally confused,
psychotic, seizuring, etc. In other words, they're very sick. Can
I scream now?!!!!!!!!!! Why don't doctors know that if a disease can be
very serious, it can also be mild and can still be a problem? If I can
understand a continuum, why can't they? It took me years for them to
listen and finally treat my vertigo, I guess because I hadn't fainted and
fallen under a bus. To them, you just aren't sick if you aren't next to
death, and even then, they hesitate to treat you. I'm at the end of my
rope today, it was, as they say, my last nerve. It doesn't pay to change
doctors either. They're all the same. I guess the important part is that
I'm getting treated--because I'm so pushy. I refuse to just lay in bed,
sick, but not sick enough to qualify for legitimate treatment.
MRIs, CAT scans, PET scans, and blood work will usually not confirm a CNS
flare but docs look for that anyway. Drs. Lahita and Wallace have both
written extensively about CNS Lupus and all the little facts I've mentioned
above, but they're addressing an audience of doctors who stopped listening
after medical school. They're done and God help us--make that our
families--if we need their help.
YOU ARE A THIEF
FIBRO YOU ARE A THIEF
IN SO MANY WAYS
THE PAIN THAT YOU CAUSE
STEALS ALL OF OUR DAYS
YOU STEAL OUR JOY
AND MAKE US WEEP.
IF THAT'S NOT ENOUGH
YOU STEAL OUR SLEEP.
YOU EAT HOPES FOR LUNCH
AND SNACK ON OUR DREAMS.
YOU NEVER GET YOUR FILL
OR SO IT SEEMS.
YOU MUST BE LOCKED UP
AND THROWN IN A HOLE.
MAYBE SOMEDAY YOU'LL RETURN
EVERYTHING THAT YOU STOLE.
This page was last updated on 03/16/2005
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