Don’t believe me? Go ahead…ask me how I’m doing. I dare you.
My answer is going to be something like this “pretty good…doing fine” or
‘Oh, I’m getting along…” and I’m going to leave it at that. I mean, do you really want to know?
My right wrist is permanently fused. Thank God my fingers still move. Most days it hurts like hell. I’ve already decided that if I lose use of my
fingers that I’m good with amputation, especially if that mitigates the
pain. It hurts to type, wash dishes and
feed myself. I’ve learned to do just
about EVERYTHING with my left hand. Yes,
EVERYTHING,
infer accordingly. Well except cut with a knife, my knife skills are horrific
and will probably one day lead to an ER visit.
Do you wanna hear that my left knee crunches and crackles
like rice crispies? Or that after
standing up to wash dishes and load the dish washer or put on a load of clothes
my feet swell and become numb. That I’m
only good for about one hour of chores in the morning and another hour in the
afternoon? That buying groceries exhausts
me and by the end of the trip to the store I’m shuffling about and dragging my swollen
aching feet.
 |
| Swollen foot...developing another nodule. |
Or, do you want to hear about the fatigue? That feeling of being bone tired and utterly
exhausted but knowing that you still have to get up and get the kids to school
or fix dinner after a long day at work. Or
maybe you want to know about the burning dry eyes, dry skin and how difficult
it can be just to swallow food. How you
sometimes eat soup because it’s EASY and not because you are on the soup diet.
Oh you wanna talk about diet…why don’t you take some of
these little Satan’s tic tacs…prednisone.
You will bloat up like a bull frog.
But later, when RA ravages all your systems, you start wasting
away.
Or maybe you’d like to hear about the pharmaceutical side
effects? My hair fell out on 2 of the 3
drugs I tried. Methotrexate made me so
nauseated, it was way worse than being preggers with a yager hangover. Now THAT is nauseated. The Aleve that I currently use to manage the
daily inflammation is eating up my stomach. I try
to remember to take a prevacid each evening and keep a bottle of Tums next to
my bed. It seems that the drugs are
almost as bad as the disease itself.
I could keep this up for quite a few more paragraphs…but if
you read this far then you are getting my drift. Four out of Seven days a week, I feel like
shit. Is that what you want to hear? The truth smacks and doesn't make for polite Wal-Mart/grocery store conversation.
What can you do for
your friends that may have Lupus, RAD, Reynaud’s, Sjorjens or Psoriatic Arthritis? If you notice me or them having trouble lifting a cup (yep,
the old coffee cup can sometimes be too heavy to lift) offer to help. If you notice your friend, sister,
mother/father looks tired don’t offer to help or ask about a meal. Just show up…sweep, vacuum or load the dish
washer. Pay for someone to clean their
house. Drop off a pot of soup or frozen casserole. Believe me any help will be appreciated.
Please understand that if you see one of us out somewhere with family or friends, they are making a TREMENDOUS effort to be there. Just because they are out and about doesn't mean it won't cost them later.
Yeah…I was a little worked up when I wrote this. It is so hard to get other people to
understand the pain, the debilitation, and the life sucking of a chronic
disease. But I ain’t taking none of it back…it’s the truth. And if you can’t handle it, then please just
walk away and don’t ask…because today I feel like shit…and I’ve got a softball awards
banquet tonight that I don’t intend to miss.
So I’m off to find my prednisone and aleve. Gonna chase it with some Benadryl, put up swollen foot and rest.
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